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Sample records for adolescent illness chronic

  1. Peer interaction in adolescents with a chronic illness

    NARCIS (Netherlands)

    Meijer, SA; Sinnema, G; Bijstra, JO; Mellenbergh, GJ; Wolters, WHG

    2000-01-01

    This study examined behavioural, cognitive and affective aspects of peer interaction of adolescents with a chronic illness. The aim of the study was twofold: (1) describe peer interaction of adolescents with a chronic illness in comparison with norms of healthy adolescents; (2) examine the

  2. Stress in adolescents with a chronically ill parent: inspiration from Rolland's Family Systems-Illness model

    NARCIS (Netherlands)

    Sieh, D.S.; Dikkers, A.L.C.; Visser-Meily, J.M.A.; Meijer, A.M.

    2012-01-01

    This article was inspired by Rolland’s Family Systems-Illness (FSI) model, aiming to predict adolescent stress as a function of parental illness type. Ninety-nine parents with a chronic medical condition, 82 partners, and 158 adolescent children (51 % girls; mean age = 15.1 years) participated in

  3. [Strategies of coping with chronic illness in adolescents].

    Science.gov (United States)

    Flores-Carvajal, Daniel; Urzúa M, Alfonso

    2016-01-01

    To develop a tool to evaluate coping strategies for chronic illness in adolescents. Based on a theoretical review and semi-structured interviews with adolescents, a questionnaire was prepared that was finally evaluated by judges experienced in in understanding, relevance and viability. A scale is proposed that consists of 60 items grouped into 12 coping families. The scale may be a useful clinical tool to provide key information about the experience and ways to cope with illness in adolescents. Copyright © 2015 Sociedad Chilena de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.

  4. Differential outcomes of adolescents with chronically ill and healthy parents

    NARCIS (Netherlands)

    Sieh, D.S.; Visser-Meily, J.M.A.; Meijer, A.M.

    2013-01-01

    Approximately 10% of children grow up with a parent who has been diagnosed with a chronic medical condition (CMC) and seem to be at risk for adjustment difficulties. We examined differences in behavioral, psychosocial and academic outcomes between 161 adolescents from 101 families with a chronically

  5. Psychiatric aspec ts of chronic physical illness in adolescence

    African Journals Online (AJOL)

    2008-05-18

    May 18, 2008 ... Survival rates for children who suffer chronic physical illnesses have increased dramatically in ... may have a profound impact on development, quality of life, treatment .... emotional, cognitive and social elements. ... trigger psychiatric disorder in a parent, which in .... attainment and employment suggest mild.

  6. Peer Attachment, Perceived Parenting Style, Self-concept, and School Adjustments in Adolescents with Chronic Illness.

    Science.gov (United States)

    Ahn, Jeong-Ah; Lee, Sunhee

    2016-12-01

    The purpose of this study was to identify how peer attachment and parenting style differentially affect self-concept and school adjustment in adolescents with and without chronic illness. A cross-sectional study using multiple group analysis on the Korean panel data was used. A nationwide stratified multistage cluster sampling method was used and the survey was conducted in 2013 on 2,092 first-year middle school students in Korea. We used standardized instruments by the National Youth Policy Institute to measure peer attachment, parenting style, self-concept, and school adjustment. Multiple-group structural equation modeling was used to evaluate the difference of relations for peer attachment, parenting style, self-concept, and school adjustment variable between adolescents with chronic illness and those without chronic illness. The model fit of a multiple-group structural equation modeling was good. The difference of the path from negative parenting style to self-concept between the two groups was significant, and a significant between-group difference in the overall path was found. This indicated that self-concept in adolescents with chronic illness was more negatively affected by negative parenting style than in adolescents without chronic illness. Healthcare providers can promote the process of school adjustment in several ways, such as discussing this issue directly with adolescent patients, along with their parents and peers, examining how the organization and content of the treatment can be modified according to the adolescents' school life. Copyright © 2016. Published by Elsevier B.V.

  7. Self-esteem of children and adolescents with chronic illness: a meta-analysis.

    Science.gov (United States)

    Pinquart, M

    2013-03-01

    Chronic illness may be a risk factor for low self-esteem; however, previous meta-analyses are inconclusive whether children with a chronic illness have lower self-esteem than their healthy peers. The goal of the present study was to summarize available research in order to compare the self-esteem of children and adolescents with a chronic illness with that of healthy children. Random-effects meta-analysis was used to integrate the results of 621 empirical studies that compare levels of self-esteem of children with a chronic physical illness with healthy peers or general test norms. Studies were identified via the electronic databases Adolesc, Embase, Google Scholar, MEDLINE, PSNYDEX, PSYCINFO, and cross-referencing. Children with chronic illnesses have lower self-esteem than healthy peers or test norms (g = -0.18 standard deviation units). The lowest levels of self-esteem were observed in children with chronic fatigue syndrome and chronic headaches. Lower levels of self-esteem in children with a chronic illness were found in girls than in boys, in adolescents than in children, in children from developing or threshold countries, when results were collected from observer ratings rather than child reports, in studies published in the 1990s, and when children with chronic illnesses were directly compared with healthy children instead of test norms. Paediatricians, parents, and teachers should promote experiences of success and positive peer-relations, which are important sources of self-esteem. In addition, psychosocial interventions for children with chronic illnesses should be offered for children with reduced self-esteem. © 2012 Blackwell Publishing Ltd.

  8. Suicidal Behaviour Among Adolescents and Young Adults with Self-Reported Chronic Illness.

    Science.gov (United States)

    Ferro, Mark A; Rhodes, Anne E; Kimber, Melissa; Duncan, Laura; Boyle, Michael H; Georgiades, Katholiki; Gonzalez, Andrea; MacMillan, Harriet L

    2017-12-01

    The aims of this study were to estimate the: (1) 12-mo prevalence of suicidal thoughts, plans, and attempts in a population sample of adolescents and young adults with and without chronic illness; (2) associations among chronic illness and suicidal thoughts and behaviour (STB); and, (3) moderating roles of mood and substance use disorder on this association. Individuals were aged 15 to 30 y ( n = 5,248) from the Canadian Community Health Survey-Mental Health. Twelve-month STB and psychiatric disorder were measured using the World Health Organization Composite International Diagnostic Interview 3.0. Multinomial logistic regression examined associations between chronic illness and STB, adjusting for relevant sociodemographic and health characteristics. Product term interactions among chronic illness, mood, and substance use disorders were included in the regression models to examine potential moderating effects. Prevalence of suicidal thoughts, plans, and attempts was higher in individuals with chronic illness ( P < 0.01 for all). After adjustment, chronic illness increased the odds for suicidal thoughts [OR = 1.28 (1.01 to 1.64)], plans [OR = 2.34 (1.22 to 4.39)], and attempts [OR = 4.63 (1.52 to 14.34)]. In the presence v. absence of a mood disorder, the odds for suicidal thoughts were higher among individuals with chronic illness [OR = 1.89 (1.06 to 5.28)]. Suicidal thoughts and behaviours are common among adolescents and young adults with chronic illness, particularly among those with comorbid mood disorders. Health professionals should routinely ask about STB during assessments of their adolescent and young adult patients.

  9. Coping styles and locus of control as predictors for psychological adjustment of adolescents with a chronic illness

    NARCIS (Netherlands)

    Meijer, SA; Sinnema, G; Bijstra, JO; Mellenbergh, GJ; Wolters, WHG

    This study examines the way coping styles and locus of control contribute to the prediction of psychosocial adjustment in adolescents with a chronic illness. Psychosocial adjustment of 84 adolescents aged 13-16 years with a chronic illness was assessed with measures of social adjustment. global

  10. Feasibility of a transition intervention aimed at adolescents with chronic illness

    DEFF Research Database (Denmark)

    Hanghøj, Signe; Boisen, Kirsten A; Schmiegelow, Kjeld

    2018-01-01

    BACKGROUND: International guidelines recommend planned and structured transition programmes for adolescents with chronic illness because inadequate transition may lead to poor disease control and risk of lacking outpatient follow-up. OBJECTIVE: To investigate the feasibility of a transition...... intervention. Reasons for decline and drop-outs were calculated. Adolescents' experiences of advantages and disadvantages of participating and reasons for no-shows were investigated through focus groups and telephone interviews, which were analysed using thematic analysis. RESULTS: One hundred and twenty...

  11. Psychological interventions for parents of children and adolescents with chronic illness

    OpenAIRE

    Eccleston, Chris; Palermo, T M; Fisher, Emma; Law, E

    2012-01-01

    Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. To evaluate the effectiveness of psychological therapies that include coping strategies for...

  12. Systematic review of positive youth development programs for adolescents with chronic illness.

    Science.gov (United States)

    Maslow, Gary R; Chung, Richard J

    2013-05-01

    The Positive Youth Development (PYD) framework has been successfully used to support at-risk youth. However, its effectiveness in fostering positive outcomes for adolescents with chronic illness has not been established. We performed a systematic review of PYD-consistent programs for adolescents with chronic illness. Data sources included PubMed, CINAHL, and PsychINFO. Guided by an analytic framework, we searched for studies of PYD-consistent programs serving adolescents and young adults aged 13 through 24 with chronic illness. References were screened iteratively with increasing depth until a focused cohort was obtained and reviewed in full. The authors separately reviewed the studies using structured analysis forms. Relevant study details were abstracted during the review process. Fifteen studies describing 14 programs were included in the analysis. Three comprehensive programs included all 3 core components of a PYD program, including opportunities for youth leadership, skill building, and sustained connections between youth and adults. Four programs were primarily mentoring programs, and 7 others focused on youth leadership. Programs served youth with a variety of chronic illnesses. The quality and type of evaluation varied considerably, with most reporting psychosocial outcomes but only a few including medical outcomes. The PYD-consistent programs identified in this review can serve as models for the development of youth development programs for adolescents with chronic illness. Additional study is needed to evaluate such programs rigorously with respect to both psychosocial and health-related outcomes. PYD-consistent programs have the potential to reach youth with chronic illness and promote positive adult outcomes broadly.

  13. The Role of Hope for Adolescents with a Chronic Illness: An Integrative Review.

    Science.gov (United States)

    Griggs, Stephanie; Walker, Rachel K

    2016-01-01

    Hope is a human strength essential for adolescents' enduring and coping with chronic illness however, the role of hope is not well understood in this population. This integrative review describes what is currently known about the role of hope in adolescents with a chronic illness. A methodological review using an integrative approach by R. Whittemore and K. Knafl (2005) was performed. MEDLINE via Pubmed; CINAHL; PyscINFO and Google scholar were searched for articles published in peer-reviewed journals from 1995 to 2015, using search terms 'hope and chronic illness' with age limiters for all except Google scholar (title search of "hope and adolescents"). Of the 197 studies initially retrieved: a total of 27 quantitative studies, 8 qualitative studies and 19 theoretical works were selected for review. Seven themes emerged including that hope: (i) promotes health (ii) facilitates coping and adjustment, (iii) enhances quality of life, (iv) is essential in purpose in life and illness (v) improves self-esteem, (vi) is an important factor in resilience and (vii) affects maturation. Persons reporting higher levels of hope find multiple routes to goals, view setbacks as challenges, and better manage psychological symptoms. Although theory and a limited body of empirical research to date suggest a link between hopeful thinking and physical health, the specific mechanisms remain unclear. As hope is linked to resilience, further research should explore whether adolescents with higher hope return to baseline faster than their lower hope counterparts. Copyright © 2016 Elsevier Inc. All rights reserved.

  14. A qualitative content analysis of peer mentoring video calls in adolescents with chronic illness.

    Science.gov (United States)

    Ahola Kohut, Sara; Stinson, Jennifer; Forgeron, Paula; van Wyk, Margaret; Harris, Lauren; Luca, Stephanie

    2018-05-01

    This article endeavored to determine the topics of discussion during open-ended peer mentoring between adolescents and young adults living with chronic illness. This study occurred alongside a study of the iPeer2Peer Program. Fifty-two calls (7 mentor-mentee pairings) were audio recorded, transcribed verbatim, and analyzed using inductive coding with an additional 30 calls (21 mentor-mentee pairings) coded to ensure representativeness of the data. Three categories emerged: (1) illness impact (e.g., relationships, school/work, self-identity, personal stories), (2) self-management (e.g., treatment adherence, transition to adult care, coping strategies), and (3) non-illness-related adolescent issues (e.g., post-secondary goals, hobbies, social environments). Differences in discussed topics were noted between sexes and by diagnosis. Peer mentors provided informational, appraisal, and emotional support to adolescents.

  15. From Controlling to Letting Go: What Are the Psychosocial Needs of Parents of Adolescents with a Chronic Illness?

    Science.gov (United States)

    Akre, Christina; Suris, Joan-Carles

    2014-01-01

    While one of the main objectives of adolescence is to achieve autonomy, for the specific population of adolescents with a chronic illness (CI), the struggle for autonomy is accentuated by the limits implied by their illness. However, little is known concerning the way their parents manage and cope with their children's autonomy acquisition.…

  16. Self-esteem in adolescents with chronic physical illness vs. controls in Northern Russia.

    Science.gov (United States)

    Zashikhina, Anna; Hagglof, Bruno

    2014-01-01

    This work aims to study self-esteem in adolescents with diabetes, asthma and epilepsy; compare the results with those of the representative sample of healthy adolescents; and evaluate the predictive value of certain demographic, family-related, and disease-related factors on self-esteem. A total of 148 chronically ill adolescents and 301 matched healthy counterparts completed the Rosenberg Self Esteem Scale and the "I think I am" questionnaire. Adolescents' parents answered socio-economic status questions. Disease severity was evaluated by doctors of the outpatient clinic. Comparison analysis of the three disease groups revealed highest self-esteem perception in adolescents with diabetes, and lowest in adolescents with epilepsy. Unexpectedly, adolescents with diabetes scored higher than their healthy counterparts. There were no significant differences between the reports of adolescents with asthma and controls. In the epilepsy group, self-esteem was predicted mostly by disease severity and socio-economic status in diabetes and asthma groups, as well as by age and gender. The maintenance of positive self-esteem in adolescents with diabetes and asthma is a very reassuring finding. The other results of our study provide support for recognizing adolescents with epilepsy as a vulnerable group in the society. A multidisciplinary professional approach targeted on adolescents with epilepsy is needed, with focus on factors connected with maturation and gender issues.

  17. Peer Attachment, Perceived Parenting Style, Self-concept, and School Adjustments in Adolescents with Chronic Illness

    OpenAIRE

    Jeong-Ah Ahn, PhD, RN; Sunhee Lee, PhD, RN

    2016-01-01

    Purpose: The purpose of this study was to identify how peer attachment and parenting style differentially affect self-concept and school adjustment in adolescents with and without chronic illness. Methods: A cross-sectional study using multiple group analysis on the Korean panel data was used. A nationwide stratified multistage cluster sampling method was used and the survey was conducted in 2013 on 2,092 first-year middle school students in Korea. We used standardized instruments by the N...

  18. Psychological interventions for parents of children and adolescents with chronic illness.

    Science.gov (United States)

    Eccleston, Christopher; Palermo, Tonya M; Fisher, Emma; Law, Emily

    2012-08-15

    Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. To evaluate the effectiveness of psychological therapies that include coping strategies for parents of children/adolescents with chronic illnesses (painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury, inflammatory bowel diseases, skin diseases or gynaecological disorders). The therapy will aim to improve parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and family functioning. We searched CENTRAL, MEDLINE, EMBASE and PsycINFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. The initial search was from inception of these databases to June 2011 and we conducted a follow-up search from June 2011 to March 2012. We identified additional studies from the reference list of retrieved papers and from discussion with investigators. Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents (under 19 years of age) with a chronic illness compared to active control, wait list control or treatment as usual. We excluded studies if the parent component was a coaching intervention, the aim of the intervention was health prevention/promotion, the comparator was a pharmacological treatment, the child/adolescent had an illness not listed above or the study included children with more than one type of chronic illness. Further to this, we excluded studies when the sample size of either comparator group was fewer than 10 at post-treatment. We included 35

  19. Psychological interventions for parents of children and adolescents with chronic illness

    Science.gov (United States)

    Eccleston, Christopher; Palermo, Tonya M; Fisher, Emma; Law, Emily

    2012-01-01

    Background Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. Objectives To evaluate the effectiveness of psychological therapies that include coping strategies for parents of children/adolescents with chronic illnesses (painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury, inflammatory bowel diseases, skin diseases or gynaecological disorders). The therapy will aim to improve parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and family functioning. Search methods We searched CENTRAL, MEDLINE, EMBASE and PsyclNFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. The initial search was from inception of these databases to June 2011 and we conducted a follow-up search from June 2011 to March 2012. We identified additional studies from the reference list of retrieved papers and from discussion with investigators. Selection criteria Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents (under 19 years of age) with a chronic illness compared to active control, wait list control or treatment as usual. We excluded studies if the parent component was a coaching intervention, the aim of the intervention was health prevention/promotion, the comparator was a pharmacological treatment, the child/adolescent had an illness not listed above or the study included children with more than one type of chronic illness. Further to this, we excluded studies when the sample size of either comparator

  20. Young adult outcomes of children growing up with chronic illness: an analysis of the National Longitudinal Study of Adolescent Health.

    Science.gov (United States)

    Maslow, Gary R; Haydon, Abigail A; Ford, Carol Ann; Halpern, Carolyn Tucker

    2011-03-01

    To examine young adult outcomes in a nationally representative US cohort of young adults growing up with a chronic illness. Secondary analysis of nationally representative data from wave III (in 2001) of the National Longitudinal Study of Adolescent Health. United States. The analytic sample comprised 13 236 young adults aged 18 to 28 years at wave III. Self-report of a chronic physical illness (asthma, cancer, diabetes mellitus, or epilepsy) in adolescence. Respondents with asthma or nonasthmatic chronic illness (cancer, diabetes mellitus, or epilepsy) were compared with individuals without these conditions. Self-report of high school graduation, ever having employment, currently having employment, living with a parent/guardian, and ever receiving public assistance. Three percent of young adults had nonasthmatic chronic illness (cancer, diabetes, or epilepsy), and 16.0% had asthma. Most young adults with chronic illness graduated high school (81.3%) and currently had employment (60.4%). However, compared with healthy young adults, those with nonasthmatic chronic illness were significantly less likely to graduate high school, ever have had employment, or currently have employment and were more likely to receive public assistance. Compared with young adults with asthma, those with nonasthmatic chronic illness again had significantly worse young adult outcomes on all measures. Most young adults growing up with a chronic illness graduate high school and have employment. However, these young adults are significantly less likely than their healthy peers to achieve these important educational and vocational milestones.

  1. An evaluation of a positive youth development program for adolescents with chronic illness.

    Science.gov (United States)

    Maslow, Gary; Adams, Cathleen; Willis, Matthew; Neukirch, Jodie; Herts, Kate; Froehlich, Wendy; Calleson, Diane; Rickerby, Michelle

    2013-02-01

    Youth with chronic illness often struggle transitioning to adulthood and adult medical care. This article examines the outcomes of a group mentoring program called The Adolescent Leadership Council (TALC) that brings together high school participants and college mentors, all with chronic illness. TALC uses a positive youth development (PYD) approach, emphasizing strong relationships between youth and adults in an environment where youth can learn important life skills and take a leadership role. A pre-/postprogram participant survey was conducted for high school participants using a loneliness scale and a transition readiness survey. An alumni survey was conducted with all high school and college mentor graduates to assess educational-, vocational-, and health care-related outcomes. Program records review and the alumni survey indicated that TALC was consistent with the PYD program model. Twenty high school students participated in the pre-/postprogram outcomes evaluation, which demonstrated a decrease in loneliness from 46 to 38.5 (p < .001) and an increase in health care self-advocacy from 3.8 to 4.2 (p < .001). Thirty-four alumni participated in the alumni survey. All high school and college mentor alumni had graduated from high school and college, respectively, and all were either currently in school or working. The majority of alumni were seeing adult providers for medical care. The TALC program applies the principles of PYD to support positive educational, vocational, and health care outcomes for youth with chronic illness. Program development using the PYD perspective is an important new approach for supporting adult development of youth with chronic illness. Copyright © 2013 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

  2. Body image of children and adolescents with chronic illness: a meta-analytic comparison with healthy peers.

    Science.gov (United States)

    Pinquart, M

    2013-03-01

    This meta-analysis integrates results from 330 studies on differences between body image of children and adolescents with and without chronic physical illness. Young people with a chronic illness had a less positive body image than their healthy peers although the average size of differences was small (g=-.30 standard deviation units). A comparison of diseases showed that young people with obesity (g=-.79), cystic fibrosis (g=-.50), scoliosis (g=-.41), asthma (g=-.37), growth hormone deficits (g=-.35), spina bifida (g=-.23), cancer (g=-.20), and diabetes (g=-.17) evaluated their body less positively than their healthy peers. Furthermore, levels of body dissatisfaction varied by age at onset of the disease, method for assessing body image, ethnicity, year of publication, and comparison group. Recommendations are stated for reducing effects of chronic illness on the body image of people with chronic illness. Copyright © 2012 Elsevier Ltd. All rights reserved.

  3. Psychological interventions for parents of children and adolescents with chronic illness.

    Science.gov (United States)

    Eccleston, Christopher; Fisher, Emma; Law, Emily; Bartlett, Jess; Palermo, Tonya M

    2015-04-15

    Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include interventions directed at the parent only or at parent and child/adolescent, and are designed to improve parent, child, and family outcomes. This is an updated version of the original Cochrane review published in Issue 8, 2012, (Psychological interventions for parents of children and adolescents with chronic illness). To evaluate the efficacy of psychological therapies that include parents of children and adolescents with chronic illnesses including painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury (TBI), inflammatory bowel diseases (IBD), skin diseases, or gynaecological disorders. We also aimed to evaluate the adverse events related to implementation of psychological therapies for this population. Secondly, we aimed to evaluate the risk of bias of included studies and the quality of outcomes using the GRADE assessment. We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE and PsycINFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. Databases were searched to July 2014. Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents with a chronic illness compared to an active control, waiting list, or treatment as usual control group. Study characteristics and outcomes were extracted from included studies. We analysed data using two categories. First, we analysed data by each individual medical condition collapsing across all treatment classes at two time points. Second, we analysed data by each individual treatment class; cognitive behavioural therapy (CBT), family therapy (FT), problem solving therapy (PST) and multisystemic therapy (MST) collapsing across all medical conditions. For both sets of analyses we looked

  4. Self-reported barriers to medication adherence among chronically ill adolescents

    DEFF Research Database (Denmark)

    Hanghøj, Signe; Boisen, Kirsten A

    2014-01-01

    's views. Data was analyzed using a thematic synthesis approach. RESULTS: Of 3,655 records 28 articles with both quantitative, qualitative, and q-methodology study designs were included in the review. The synthesis led to the following key themes: Relations, adolescent development, health and illness......, forgetfulness, organization, medicine complexity, and financial costs. Most reported barriers to adherence were not unique to specific diseases. CONCLUSION: Some barriers seem to be specific to adolescence; for example, relations to parents and peers and adolescent development. Knowledge and assessment...

  5. Been There, Done That: The Experience of Acting as a Young Adult Mentor to Adolescents Living With Chronic Illness.

    Science.gov (United States)

    Ahola Kohut, Sara; Stinson, Jennifer; Forgeron, Paula; Luca, Stephanie; Harris, Lauren

    2017-10-01

    To explore the perceived benefits and challenges of acting as a young adult peer mentor to adolescents with chronic illness. A qualitative descriptive study, using interviews and a focus group, explored the perceptions of young adult peer mentors following participation in the iPeer2Peer program, a Skype-based peer-mentorship program for adolescents with chronic illness. Interviews and focus group data were transcribed and analyzed using inductive content analysis. Ten peer mentors (20.00 ± 1.49 years old, range 17-22 years; diagnosed with chronic pain [n = 4] or juvenile idiopathic arthritis [n = 6]) who mentored four mentees (±2.55 mentees, range = 1-10 mentees) participated. Four main categories were identified: social connection, personal growth, mentor role in mentee growth, and logistics of mentorship. Acting as a peer mentor online is a feasible and rewarding experience that supports the mentor's own illness self-management, social connection, and personal growth. © The Author 2017. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  6. Development of a measure of the impact of chronic parental illness on adolescent and adult children. The parental illness impact scale (Parkinson's disease).

    Science.gov (United States)

    Schrag, Anette; Morley, David; Quinn, Niall; Jahanshahi, Marjan

    2004-10-01

    Although chronic illness is likely to affect the well-being of patients' children, no assessment tools are currently available to measure this impact of parental illness. We therefore developed such an instrument based on interviews with children of patients with Parkinson's disease (PD). This questionnaire and other measures of psychological well-being were completed by 89 children, aged 12-48, years of patients with PD. Factor analysis revealed six domains with 38 questions. These six domains of the 'Parental Illness Impact Scale (Parkinson's disease)' or PIIS (PD) had satisfactory internal consistency and validity. Its six sub-scales correlated significantly and differentially with corresponding measures, including the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48; r = -0.2 to 0.85), the Beck Depression Inventory (r = -0.07 to -0.40) or Birleson Depression Self-Rating Scale (r = 0.04 to -0.62), and the Rosenberg Self-Esteem Scale (r = -0.01 to 0.33) as well as age (r = -0.37 to 0.28) and parent's disease duration (r = -0.31 to 0.34). The PIIS is the first instrument to assess the impact of parental illness on children. Its psychometric properties should be tested further in larger samples, including children of patients with other chronic disorders such as multiple sclerosis or chronic heart disease.

  7. From controlling to letting go: what are the psychosocial needs of parents of adolescents with a chronic illness?

    Science.gov (United States)

    Akre, Christina; Suris, Joan-Carles

    2014-10-01

    While one of the main objectives of adolescence is to achieve autonomy, for the specific population of adolescents with a chronic illness (CI), the struggle for autonomy is accentuated by the limits implied by their illness. However, little is known concerning the way their parents manage and cope with their children's autonomy acquisition. Our aim was to identify the needs and preoccupations of parents of adolescents with CI in coping with their children's autonomy acquisition and to determine whether mothers and fathers coped differently. Using a qualitative approach, 30 parents of adolescents with CI participated in five focus groups. Recruitment took place in five specialized pediatric clinics from our university hospital. Thematic analysis was conducted. Transcript analyses suggested four major categories of preoccupations, those regarding autonomy acquisition, giving or taking on autonomy, shared management of treatment and child's future. Some aspects implied differences between mothers' and fathers' viewpoints and ways of experiencing this period of life. Letting go can be hard for the father, mother, adolescent or all three. Helping one or the other can in turn improve family functioning as a whole. Reported findings may help health professionals better assist parents in managing their child's acquisition of autonomy. © The Author 2014. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.

  8. Retrospective chart review of obesity and episodic and chronic illness among rural Mexican-American adolescents accessing rural health clinic services.

    Science.gov (United States)

    Champion, Jane Dimmitt; Pierce, Sherrie; Collins, Jennifer L

    2015-06-01

    Obesity impacts the physical and psychological health of children and adolescents, and is a risk factor for development of episodic and chronic illness. Rural Mexican-American adolescents are at risk for obesity and associated chronic illnesses.The study used a retrospective chart review of data collected routinely in a rural health clinic setting from 1 January 2005 to 31 December 2010 to assess incidence of overweight/obesity status and episodic or chronic illness among Mexican-American adolescents aged 12-18 years. Analyses included body mass index, age, gender, and episodic or chronic illness diagnoses. Two hundred twelve charts were audited; women (n = 114, 53.8%), men (n = 98 46.2%); normal (n = 105, 49.5%), overweight/obese (n = 107, 50.5%). There were more female normal (n = 61, 53.5%) vs. overweight/obese (n = 53, 46.5%). More male overweight/obese (n = 54, 55.1%) than normal weight (n = 44, 44.9%). Age at first documented overweight/obesity status occurred in early adolescence (median = 13 years, mode = 12 years). Chronic illness incidence was higher among men than women, and overweight/obese vs. normal weight adolescents and in sub-categorizations by weight and specific illness. Incidence of episodic illness was higher among women than men, with variation by weight and specific illness. Disproportionately high incidence of episodic or chronic illness and overweight/obesity identified among rural Mexican-American adolescents compels intervention modification to improve effectiveness. © 2014 Wiley Publishing Asia Pty Ltd.

  9. Anxiety in Medically Ill Children/Adolescents

    OpenAIRE

    Pao, Maryland; Bosk, Abigail

    2010-01-01

    Anxiety disorders are thought to be one of the most common psychiatric diagnoses in children/adolescents. Chronic medical illness is a significant risk factor for the development of an anxiety disorder and the prevalence rate of anxiety disorders among youths with chronic medical illnesses is higher compared to their healthy counterparts. Anxiety disorders may develop secondary to predisposing biological mechanisms related to a child’s specific medical illness, as a response to being ill or i...

  10. The role of team climate in improving the quality of chronic care delivery: a longitudinal study among professionals working with chronically ill adolescents in transitional care programmes.

    Science.gov (United States)

    Cramm, Jane M; Strating, Mathilde M H; Nieboer, Anna P

    2014-05-22

    This study aimed to (1) evaluate the effectiveness of implementing transition programmes in improving the quality of chronic care delivery and (2) identify the predictive role of (changes in) team climate on the quality of chronic care delivery over time. This longitudinal study was undertaken with professionals working in hospitals and rehabilitation units that participated in the transition programme 'On Your Own Feet Ahead!' in the Netherlands. A total of 145/180 respondents (80.6%) filled in the questionnaire at the beginning of the programme (T1), and 101/173 respondents (58.4%) did so 1 year later at the end of the programme (T2). A total of 90 (52%) respondents filled in the questionnaire at both time points. Two-tailed, paired t tests were used to investigate improvements over time and multilevel analyses to investigate the predictive role of (changes in) team climate on the quality of chronic care delivery. Transition programme. Quality of chronic care delivery measured with the Assessment of Chronic Illness Care Short version (ACIC-S). The overall ACIC-S score at T1 was 5.90, indicating basic or intermediate support for chronic care delivery. The mean ACIC-S score at T2 significantly improved to 6.70, indicating advanced support for chronic care. After adjusting for the quality of chronic care delivery at T1 and significant respondents' characteristics, multilevel regression analyses showed that team climate at T1 (pteam climate (pteam climate to enhance the quality of chronic care delivery to chronically ill adolescents. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  11. Puppy Love, Adolescence, and Chronic Illness: The Importance of Pets for Youth with Type 1 Diabetes

    Directory of Open Access Journals (Sweden)

    Ashby F. Walker PhD

    2015-05-01

    Full Text Available The benefits of animal-companion ties to well-being are consistently documented, yet few studies use patient-centered methodologies to examine how youth living with chronic illnesses rely on domestic pets for support. Youth with type 1 diabetes (T1D aged 12 to 19 years (N=40 completed surveys involving a prompt to take five photos of “what diabetes means to you,” with an accompanying narrative. Content analysis was conducted for photos/narratives and numeric variables analyzed including socio-economic status (SES: measured by total household income and years of parental education and HbA1C. More than half of the youth participants took pictures of coping mechanisms, including pictures of their pets. In fact, pictures of pets outnumbered pictures of people three to one. Pet depictions were captured by youth from all SES levels. Youth with T1D identify pets as an important source of support. More research is needed to understand how pets may offset disease burden for youth with T1D.

  12. Puppy Love, Adolescence, and Chronic Illness: The Importance of Pets for Youth with Type 1 Diabetes.

    Science.gov (United States)

    Walker, Ashby F; Johnson, Cathryn; Schatz, Desmond A; Silverstein, Janet H; Rohrs, Henry J

    2015-05-01

    The benefits of animal-companion ties to well-being are consistently documented, yet few studies use patient-centered methodologies to examine how youth living with chronic illnesses rely on domestic pets for support. Youth with type 1 diabetes (T1D) aged 12 to 19 years (N=40) completed surveys involving a prompt to take five photos of "what diabetes means to you," with an accompanying narrative. Content analysis was conducted for photos/narratives and numeric variables analyzed including socio-economic status (SES: measured by total household income and years of parental education) and HbA1C. More than half of the youth participants took pictures of coping mechanisms, including pictures of their pets. In fact, pictures of pets outnumbered pictures of people three to one. Pet depictions were captured by youth from all SES levels. Youth with T1D identify pets as an important source of support. More research is needed to understand how pets may offset disease burden for youth with T1D.

  13. Peer Attachment, Perceived Parenting Style, Self-concept, and School Adjustments in Adolescents with Chronic Illness

    Directory of Open Access Journals (Sweden)

    Jeong-Ah Ahn, PhD, RN

    2016-12-01

    Conclusions: Healthcare providers can promote the process of school adjustment in several ways, such as discussing this issue directly with adolescent patients, along with their parents and peers, examining how the organization and content of the treatment can be modified according to the adolescents' school life.

  14. Youth friendly communication in a transition clinic aimed at adolescents with chronic illness

    DEFF Research Database (Denmark)

    Hanghøj, Signe; Boisen, Kirsten A; Schmiegelow, Kjeld

    2018-01-01

    , recognition, examples, asking for the adolescents' own expert knowledge and the décor. The health professionals actively negotiated power. Conclusion Positionings and linguistic tools were inspired by youth friendly tools including the HEADS (Home Education/Eating Activities Drugs Sex/Safety/Self harm...

  15. An Analysis of a Novel, Short-Term Therapeutic Psychoeducational Program for Children and Adolescents with Chronic Neurological Illness and Their Parents; Feasibility and Efficacy.

    Science.gov (United States)

    Joo, Bonglim; Lee, Young-Mock; Kim, Heung Dong; Eom, Soyong

    2017-01-01

    The purpose of this intervention was to develop a therapeutic psycho-educational program that improves quality of life in children and adolescents who are experiencing chronic neurological illness, including epilepsy, and their parents, and to analyze the intervention's feasibility and efficacy and participants' satisfaction. Participants were eight children ( n = 8) and adolescents and their parents; participating children were experiencing chronic neurological illness with psychological comorbidity; children with intellectual impairment were excluded (IQ Stress Index, Beck Depression Inventory, Children's Depression Inventory, and Revised Children's Manifest Anxiety Scale) at pre- and post-intervention, and administered satisfaction surveys following the intervention. Participants' opinions about the program's necessity, contents, and process, and participants' overall program satisfaction were analyzed. Parents and children reported high levels of satisfaction with the program. Externalizing behavioral problems, anxiety/depression, and emotional functioning from quality of life showed improvement after the intervention. Although not statistically significant, total child stress trended downward from pre- to post-intervention. A four-session structured therapeutic psycho-educational program for children and adolescents with chronic neurological illness and their parents was successfully implemented, showing good compliance and high satisfaction and efficacy.

  16. Resident Dyads Providing Transition Care to Adolescents and Young Adults With Chronic Illnesses and Neurodevelopmental Disabilities.

    Science.gov (United States)

    Chung, Richard J; Jasien, Joan; Maslow, Gary R

    2017-04-01

    Youth with special health care needs often experience difficulty transitioning from pediatric to adult care. These difficulties may derive in part from lack of physician training in transition care and the challenges health care providers experience establishing interdisciplinary partnerships to support these patients. This educational innovation sought to improve pediatrics and adult medicine residents' interdisciplinary communication and collaboration. Residents from pediatrics, medicine-pediatrics, and internal medicine training programs participated in a transitions clinic for patients with chronic health conditions aged 16 to 26 years. Residents attended 1 to 4 half-day clinic sessions during 1-month ambulatory rotations. Pediatrics/adult medicine resident dyads collaboratively performed psychosocial and medical transition consultations that addressed health care navigation, self-care, and education and vocation topics. Two to 3 attending physicians supervised each clinic session (4 hours) while concurrently seeing patients. Residents completed a preclinic survey about baseline attitudes and experiences, and a postclinic survey about their transitions clinic experiences, changes in attitudes, and transition care preparedness. A total of 46 residents (100% of those eligible) participated in the clinic and completed the preclinic survey, and 25 (54%) completed the postclinic survey. A majority of respondents to the postclinic survey reported positive experiences. Residents in both pediatrics and internal medicine programs reported improved preparedness for providing transition care to patients with chronic health conditions and communicating effectively with colleagues in other disciplines. A dyadic model of collaborative transition care training was positively received and yielded improvements in immediate self-assessed transition care preparedness.

  17. Solving Developmental Tasks in Adolescents with a Chronic Physical Illness or Physical/Sensory Disability: A Meta-Analysis

    Science.gov (United States)

    Pinquart, Martin; Pfeiffer, Jens P.

    2015-01-01

    Chronic illnesses and disabilities may impair the attainment of age-typical developmental tasks, such as forming relationships with peers and gaining autonomy. Based on a systematic search in electronic databases and cross-referencing, 447 quantitative empirical studies were included which compared the attainment of developmental tasks of…

  18. Chronic Illness & Mental Health

    Science.gov (United States)

    ... increased risk of cardiovascular disease, diabetes, stroke, and Alzheimer’s disease, for example. Research also suggests that people with depression are at higher risk for osteoporosis relative to others. The reasons are not yet clear. One factor with some of these illnesses is that many ...

  19. An Analysis of a Novel, Short-Term Therapeutic Psychoeducational Program for Children and Adolescents with Chronic Neurological Illness and Their Parents; Feasibility and Efficacy

    Directory of Open Access Journals (Sweden)

    Bonglim Joo

    2017-05-01

    Full Text Available The purpose of this intervention was to develop a therapeutic psycho-educational program that improves quality of life in children and adolescents who are experiencing chronic neurological illness, including epilepsy, and their parents, and to analyze the intervention's feasibility and efficacy and participants' satisfaction. Participants were eight children (n = 8 and adolescents and their parents; participating children were experiencing chronic neurological illness with psychological comorbidity; children with intellectual impairment were excluded (IQ < 80. The program was carried out weekly for four sessions. In each of the 4 weeks, children's session content addressed self, emotion, coping skills, and finishing up, respectively; and parents' session content targeted family dynamic and emotional intervention, coping skills, childcare and education, and finishing up, respectively. Clinical psychologists administered psychological assessments (viz., Child Behavior Checklist, Pediatric Quality of Life Inventory, Parenting Stress Index, Beck Depression Inventory, Children's Depression Inventory, and Revised Children's Manifest Anxiety Scale at pre- and post-intervention, and administered satisfaction surveys following the intervention. Participants' opinions about the program's necessity, contents, and process, and participants' overall program satisfaction were analyzed. Parents and children reported high levels of satisfaction with the program. Externalizing behavioral problems, anxiety/depression, and emotional functioning from quality of life showed improvement after the intervention. Although not statistically significant, total child stress trended downward from pre- to post-intervention. A four-session structured therapeutic psycho-educational program for children and adolescents with chronic neurological illness and their parents was successfully implemented, showing good compliance and high satisfaction and efficacy.

  20. Single parents of children with chronic illness: an understudied phenomenon.

    Science.gov (United States)

    Brown, Ronald T; Wiener, Lori; Kupst, Mary Jo; Brennan, Tara; Behrman, Richard; Compas, Bruce E; David Elkin, T; Fairclough, Diane L; Friebert, Sarah; Katz, Ernest; Kazak, Anne E; Madan-Swain, Avi; Mansfield, Nancy; Mullins, Larry L; Noll, Robert; Patenaude, Andrea Farkas; Phipps, Sean; Sahler, O J; Sourkes, Barbara; Zeltzer, Lonnie

    2008-05-01

    To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.

  1. Looking after chronically ill dogs

    DEFF Research Database (Denmark)

    Christiansen, Stine B.; Kristensen, Annemarie Thuri; Sandøe, Peter

    2013-01-01

    thus face similar challenges when caring for their animals. This qualitative study uncovers impacts on an owner's life, when attending to the care of an aged or chronically ill dog and reflects on the differing roles of caregivers with animal and human patients. Twelve dog owners were selected for in......-depth interviews based on the dogs' diagnoses, and the choice of treatments and care expected to affect the owner's life. Interviews were recorded, transcribed, and analyzed qualitatively. The dog owners reported several changes in their lives due to their dog's condition: practicalities like extra care, changes...... in use of the home, and restrictions relating to work, social life, and finances. These were time-consuming, tough, and annoying, but could often be dealt with through planning and prioritizing. Changes in the human–dog relationship and activities caused sadness and frustration, which in turn led...

  2. Illness Identity in Adults with a Chronic Illness.

    Science.gov (United States)

    Oris, Leen; Luyckx, Koen; Rassart, Jessica; Goubert, Liesbet; Goossens, Eva; Apers, Silke; Arat, Seher; Vandenberghe, Joris; Westhovens, René; Moons, Philip

    2018-02-21

    The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78 year old; n = 276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81 year old; n = 241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.

  3. The influences of chronic illness and ego development on self-esteem in diabetic and psychiatric adolescent patients.

    Science.gov (United States)

    Jacobson, A M; Hauser, S T; Powers, S; Noam, G

    1984-12-01

    Self-esteem as measured by the Coopersmith Self-Esteem Inventory [Coopersmith, S. (1967),The Antecedents of Self-Esteem, Freeman, San Francisco] and ego development as measured by the Washington University Sentence Completion Test [Loevinger, J., and Wessler, R. (1970),Measuring Ego Development, Vol. I, Jossey-Bass, San Francisco] were evaluated in three groups of early adolescents: diabetic patients, nonpsychotic psychiatric patients, and a nonpatient group of high-school students. We found that low levels of ego development were associated with low levels of global and domain-specific self-esteem in all three subject groups. Levels of self-esteem among diabetic patients were not significantly different from those of nonpatients. While psychiatric patients had significantly lower self-esteem levels than the other groups, this difference was accounted for by preconformists, i.e., those at the lowest stages of ego development. Psychiatric patients reaching higher ego levels showed self-esteem levels indistinguishable from those of the diabetics and nonpatients.

  4. The Role of Team Climate in Improving the Quality of Chronic Care Delivery: A Longitudinal Study among Professionals Working with Chronically Ill Adolescents in Transitional Care Programmes

    NARCIS (Netherlands)

    J.M. Cramm (Jane); M.M.H. Strating (Mathilde); A.P. Nieboer (Anna)

    2014-01-01

    markdownabstractAbstract Objectives:This study aimed to (1) evaluate the effectiveness of implementing transition programmes inimproving the quality of chronic care delivery and(2) identify the predictive role of (changes in) teamclimate on the quality of chronic care delivery over time.

  5. Chronic conditions, fluid states: chronicity and the anthropology of illness

    National Research Council Canada - National Science Library

    Manderson, Lenore; Smith-Morris, Carolyn

    2010-01-01

    .... Breaking new ground in medical anthropology by challenging the chronic/acute divide in illness and disease, the editors, along with a group of rising scholars and some of the most influential minds...

  6. Systematic review of character development and childhood chronic illness.

    Science.gov (United States)

    Maslow, Gary R; Hill, Sherika N

    2016-05-08

    To review empirical evidence on character development among youth with chronic illnesses. A systematic literature review was conducted using PubMed and PSYCHINFO from inception until November 2013 to find quantitative studies that measured character strengths among youth with chronic illnesses. Inclusion criteria were limited to English language studies examining constructs of character development among adolescents or young adults aged 13-24 years with a childhood-onset chronic medical condition. A librarian at Duke University Medical Center Library assisted with the development of the mesh search term. Two researchers independently reviewed relevant titles (n = 549), then abstracts (n = 45), and finally manuscripts (n = 3). There is a lack of empirical research on character development and childhood-onset chronic medical conditions. Three studies were identified that used different measures of character based on moral themes. One study examined moral reasoning among deaf adolescents using Kohlberg's Moral Judgement Instrument; another, investigated moral values of adolescent cancer survivors with the Values In Action Classification of Strengths. A third study evaluated moral behavior among young adult survivors of burn injury utilizing the Tennessee Self-Concept, 2(nd) edition. The studies observed that youth with chronic conditions reasoned at less advanced stages and had a lower moral self-concept compared to referent populations, but that they did differ on character virtues and strengths when matched with healthy peers for age, sex, and race/ethnicity. Yet, generalizations could not be drawn regarding character development of youth with chronic medical conditions because the studies were too divergent from each other and biased from study design limitations. Future empirical studies should learn from the strengths and weaknesses of the existing literature on character development among youth with chronic medical conditions.

  7. Systematic review of character development and childhood chronic illness

    Science.gov (United States)

    Maslow, Gary R; Hill, Sherika N

    2016-01-01

    AIM: To review empirical evidence on character development among youth with chronic illnesses. METHODS: A systematic literature review was conducted using PubMed and PSYCHINFO from inception until November 2013 to find quantitative studies that measured character strengths among youth with chronic illnesses. Inclusion criteria were limited to English language studies examining constructs of character development among adolescents or young adults aged 13-24 years with a childhood-onset chronic medical condition. A librarian at Duke University Medical Center Library assisted with the development of the mesh search term. Two researchers independently reviewed relevant titles (n = 549), then abstracts (n = 45), and finally manuscripts (n = 3). RESULTS: There is a lack of empirical research on character development and childhood-onset chronic medical conditions. Three studies were identified that used different measures of character based on moral themes. One study examined moral reasoning among deaf adolescents using Kohlberg’s Moral Judgement Instrument; another, investigated moral values of adolescent cancer survivors with the Values In Action Classification of Strengths. A third study evaluated moral behavior among young adult survivors of burn injury utilizing the Tennessee Self-Concept, 2nd edition. The studies observed that youth with chronic conditions reasoned at less advanced stages and had a lower moral self-concept compared to referent populations, but that they did differ on character virtues and strengths when matched with healthy peers for age, sex, and race/ethnicity. Yet, generalizations could not be drawn regarding character development of youth with chronic medical conditions because the studies were too divergent from each other and biased from study design limitations. CONCLUSION: Future empirical studies should learn from the strengths and weaknesses of the existing literature on character development among youth with chronic medical conditions

  8. New European policy toward chronically ill employees

    NARCIS (Netherlands)

    Kopnina, H.; Haafkens, J.; Elling, L.R.

    2009-01-01

    This article provides an overview of current policies related to the chronically ill employees in the Netherlands. Different levels of policy are discussed: those formulated at the European, Dutch and organizational levels. A significantg percentage of Dutch employees suffer from longstanding

  9. Psychological and Spiritual Factors in Chronic Illness.

    Science.gov (United States)

    Leifer, Ron

    1996-01-01

    Asserts the importance of psychological and spiritual factors in the treatment of chronic illness. Discusses the inevitably of sickness, old age, and death, as well as the presence of the physician, patience, pain, and hope. Maintains that reflection on these qualities can benefit both the physician and patient. (MJP)

  10. Sleep quality in patients with chronic illness.

    Science.gov (United States)

    Kemple, Mary; O'Toole, Sinead; O'Toole, Conor

    2016-11-01

    To explore sleep quality in patients with chronic illness in primary care. Many people suffer from chronic illness with the numbers increasing. One common issue arises from problems that people have with their quality of sleep: a largely under-researched topic. This study exploring poor quality sleep allowed patients to describe their daily struggles with poor sleep in their own lives. This allowed the development of a deeper understanding of what it means to sleep poorly and find out how participants cope with not sleeping well. A qualitative approach enabling a deep exploration of patient's experiences of sleep quality was used. Interviews were conducted with a purposive sample of nine participants from a primary care clinic. Analysis utilised an interpretative approach. Data analysed produced four recurrent themes that were grouped into two categories. First, themes that identified the recognition by participants that 'something was wrong' were abrupt beginning and impact on their life. Second, themes that identified that the participants considered there was 'nothing wrong' were I am fine and I just carry on. Data revealed that poor quality sleep can have a profound effect on quality of life. Participants lived without good quality sleep for years. They had come to accept two seemingly irreconcilable ideas that not being able to sleep is an enduring problem with a distinct starting point, and paradoxically, this is not a problem that deserves much professional attention. Important original data were generated on the impact of poor quality sleep indicating that chronically disturbed sleep can increase the disease burden on patients with chronic illness. The results of this study suggest healthcare professionals need to understand how sleep quality issues impact on patient's experience of chronic illness. Data from this study will help nurses and other health professionals to deepen their understanding of the profound impact of poor quality sleep on patients with

  11. Living with a chronic illness - reaching out to others

    Science.gov (United States)

    ... from a home health aide, or other services. References American Psychological Association. Coping with a diagnosis of chronic illness. Updated August 2013. www.apa.org/helpcenter/chronic-illness.aspx . Accessed November 3, ...

  12. Growing up with a chronic illness: social success, educational/vocational distress.

    Science.gov (United States)

    Maslow, Gary R; Haydon, Abigail; McRee, Annie-Laurie; Ford, Carol A; Halpern, Carolyn T

    2011-08-01

    We compared adult educational, vocational, and social outcomes among young adults with and without childhood-onset chronic illness in a nationally representative U.S. sample. We used data from Wave IV (2008) of the National Longitudinal Study of Adolescent Health. We compared respondents who reported childhood-onset cancer, heart disease, diabetes, or epilepsy with young adults without these chronic illnesses in terms of marriage, having children, living with parents, romantic relationship quality, educational attainment, income, and employment. Multivariate models controlled for sociodemographic factors and adult-onset chronic illness. As compared with those without childhood chronic illness, respondents with childhood chronic illness had similar odds of marriage (odds ratios [OR] = .89, 95% CI: .65-1.24), having children (OR = .99, 95% CI: .70-1.42), and living with parents (OR = 1.49, 95% CI .94-2.33), and similar reports of romantic relationship quality. However, the chronic illness group had lower odds of graduating college (OR = .49, 95% CI: .31-.78) and being employed (OR = .56, 95% CI: .39-.80), and higher odds of receiving public assistance (OR = 2.13, 95% CI: 1.39-3.25), and lower mean income. Young adults growing up with chronic illness succeed socially, but are at increased risk of poorer educational and vocational outcomes. Copyright © 2011 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

  13. [Chronically ill--chronically forgotten?--communication/mobility/everyday life].

    Science.gov (United States)

    Mattern, R

    2007-04-01

    In the course of the recent years, the policy for the needs of disabled people has started a fundamental paradigm shift. Central elements of the current policy for the needs of disabled people are prevention, rehabilitation and integration. Self-determination instead of care forms the guiding principle. An indistinct definition of chronic disease makes it difficult to obtain a general idea of structures in the care and support for people with chronic diseases. The following compilation examines requirements in social legislation and questions the quality of life by means of the three exemplary aspects: communication, mobility and everyday life. Here the question remains whether the current focus on health neglects any relevant components of chronic diseases. It turns out that people with a chronic illness, although social legislation has improved, are neglected the more support they need. Care as an elementary social principle must be discussed on an interdisciplinary basis and in the context of the whole society.

  14. Activity in the chronically critically ill.

    Science.gov (United States)

    Winkelman, Chris; Higgins, Patricia A; Chen, Yea-Jyh Kathy

    2005-01-01

    Although therapeutic activity prevents functional decline and reduces mortality, little is known about typical levels of activity among intensive care unit (ICU) patients. This report of a preliminary study describes typical therapeutic activity and compares the use of two measures of activity in a small sample of chronically critically ill adults. Type, frequency, and duration of therapeutic activity were measured simultaneously with direct observation and actigraphy. The only consistent activity documented was turning (frequency: 3 turns/8 hours; duration: mean average of 11 minutes). Analysis demonstrated acceptable agreement between the two measures of activity for both frequency and duration of therapeutic but not for type of activity. Congruence between measures for duration of activity was also supported. This study provides information for investigators and practitioners who are interested in measuring or implementing therapeutic activity in selected critically ill adults.

  15. Life skills programmes for chronic mental illnesses

    Science.gov (United States)

    Tungpunkom, Patraporn; Maayan, Nicola; Soares-Weiser, Karla

    2014-01-01

    Background Most people with schizophrenia have a cyclical pattern of illness characterised by remission and relapses. The illness can reduce the ability of self-care and functioning and can lead to the illness becoming disabling. Life skills programmes, emphasising the needs associated with independent functioning, are often a part of the rehabilitation process. These programmes have been developed to enhance independent living and quality of life for people with schizophrenia. Objectives To review the effects of life skills programmes compared with standard care or other comparable therapies for people with chronic mental health problems. Search methods We searched the Cochrane Schizophrenia Group Trials Register (June 2010). We supplemented this process with handsearching and scrutiny of references. We inspected references of all included studies for further trials. Selection criteria We included all relevant randomised or quasi-randomised controlled trials for life skills programmes versus other comparable therapies or standard care involving people with serious mental illnesses. Data collection and analysis We extracted data independently. For dichotomous data we calculated relative risks (RR) and their 95% confidence intervals (CI) on an intention-to-treat basis, based on a random-effects model. For continuous data, we calculated mean differences (MD), again based on a random-effects model. Main results We included seven randomised controlled trials with a total of 483 participants. These evaluated life skills programmes versus standard care, or support group. We found no significant difference in life skills performance between people given life skills training and standard care (1 RCT, n = 32, MD −1.10; 95% CI −7.82 to 5.62). Life skills training did not improve or worsen study retention (5 RCTs, n = 345, RR 1.16; 95% CI 0.40 to 3.36). We found no significant difference in PANSS positive, negative or total scores between life skills intervention and

  16. Consent to research by mentally ill children and adolescents: The ...

    African Journals Online (AJOL)

    , the Act's statutory requirements relating to the informed consent to participation in clinical research by mentally ill children and adolescents in South Africa are examined. The necessity of doing clinical research in mentally ill children and ...

  17. Illness progression in chronic fatigue syndrome: a shifting immune baseline.

    Science.gov (United States)

    Russell, Lindsey; Broderick, Gordon; Taylor, Renee; Fernandes, Henrique; Harvey, Jeanna; Barnes, Zachary; Smylie, AnneLiese; Collado, Fanny; Balbin, Elizabeth G; Katz, Ben Z; Klimas, Nancy G; Fletcher, Mary Ann

    2016-03-10

    Validation of biomarkers for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) across data sets has proven disappointing. As immune signature may be affected by many factors, our objective was to explore the shift in discriminatory cytokines across ME/CFS subjects separated by duration of illness. Cytokine expression collected at rest across multiple studies for female ME/CFS subjects (i) 18 years or younger, ill for 2 years or less (n = 18), (ii) 18-50 years of age, ill for 7 years (n = 22), and (iii) age 50 years or older (n = 28), ill for 11 years on average. Control subjects were matched for age and body mass index (BMI). Data describing the levels of 16 cytokines using a chemiluminescent assay was used to support the identification of separate linear classification models for each subgroup. In order to isolate the effects of duration of illness alone, cytokines that changed significantly with age in the healthy control subjects were excluded a priori. Optimal selection of cytokines in each group resulted in subsets of IL-1α, 6, 8, 15 and TNFα. Common to any 2 of 3 groups were IL-1α, 6 and 8. Setting these 3 markers as a triple screen and adjusting their contribution according to illness duration sub-groups produced ME/CFS classification accuracies of 75-88 %. The contribution of IL-1α, higher in recently ill adolescent ME/CFS subjects was progressively less important with duration. While high levels of IL-8 screened positive for ME/CFS in the recently afflicted, the opposite was true for subjects ill for more than 2 years. Similarly, while low levels of IL-6 suggested early ME/CFS, the reverse was true in subjects over 18 years of age ill for more than 2 years. These preliminary results suggest that IL-1α, 6 and 8 adjusted for illness duration may serve as robust biomarkers, independent of age, in screening for ME/CFS.

  18. Labour participation of the chronically ill: a profile sketch.

    NARCIS (Netherlands)

    Baanders, A.N.; Rijken, P.M.; Peters, L.

    2002-01-01

    To improve our understanding of the problematic labour market position of people with a chronic disease, this paper describes the participation rates of several subgroups of the chronically ill in the Netherlands, as well as the aspects by which the working chronically ill differ from those who are

  19. [The adolescent with a chronic somatic disorder].

    Science.gov (United States)

    Bettschart, W

    1992-01-25

    Adolescence, a period of psychic reorganization which allows for new adjustments in order to face future life and reorganize the experience of the past, is one of the critical phases of existence. It is described as a "new birth", a successful achievement of individuation and separation processes. For the adolescent with an infirmity or chronic illness, and for his family, there exist specific problems in addition to those encountered by a healthy adolescent. The painful realization of social, professional and relational barriers is reactivated. The feeling of failure and helplessness, the impairment of self-esteem, and anger at being the victim of the unfairness of destiny, represent a supplementary affective burden for the adolescent and his family. This results in a risk of deterioration, either towards affective and social withdrawal expressed by overadaptation and weakening of psychic functions, or towards autoaggressive acting-out or various forms of marginalization. Preventive and therapeutic action by the individual and the family are discussed in the light of the case history of an adolescent suffering from a facial malformation.

  20. Substance use in adolescents with mental illness in Durban, South ...

    African Journals Online (AJOL)

    Comorbid substance use in adolescents with mental illness is often an indicator of poor treatment outcome. This study aims to determine the prevalence of, and associated risk factors for, substance use in adolescents with mental illness attending a mental health service. Data was collected from hospital records of 162 ...

  1. Chronic fatigue syndrome after infectious mononucleosis in adolescents.

    Science.gov (United States)

    Katz, Ben Z; Shiraishi, Yukiko; Mears, Cynthia J; Binns, Helen J; Taylor, Renee

    2009-07-01

    The goal was to characterize prospectively the course and outcome of chronic fatigue syndrome in adolescents during a 2-year period after infectious mononucleosis. A total of 301 adolescents (12-18 years of age) with infectious mononucleosis were identified and screened for nonrecovery 6 months after infectious mononucleosis by using a telephone screening interview. Nonrecovered adolescents underwent a medical evaluation, with follow-up screening 12 and 24 months after infectious mononucleosis. After blind review, final diagnoses of chronic fatigue syndrome at 6, 12, and 24 months were made by using established pediatric criteria. Six, 12, and 24 months after infectious mononucleosis, 13%, 7%, and 4% of adolescents, respectively, met the criteria for chronic fatigue syndrome. Most individuals recovered with time; only 2 adolescents with chronic fatigue syndrome at 24 months seemed to have recovered or had an explanation for chronic fatigue at 12 months but then were reclassified as having chronic fatigue syndrome at 24 months. All 13 adolescents with chronic fatigue syndrome 24 months after infectious mononucleosis were female and, on average, they reported greater fatigue severity at 12 months. Reported use of steroid therapy during the acute phase of infectious mononucleosis did not increase the risk of developing chronic fatigue syndrome. Infectious mononucleosis may be a risk factor for chronic fatigue syndrome in adolescents. Female gender and greater fatigue severity, but not reported steroid use during the acute illness, were associated with the development of chronic fatigue syndrome in adolescents. Additional research is needed to determine other predictors of persistent fatigue after infectious mononucleosis.

  2. The MMPI-2 in chronic psychiatric illness.

    Science.gov (United States)

    Bosch, Peggy; Van Luijtelaar, Gilles; Van Den Noort, Maurits; Schenkwald, Julia; Kueppenbender, Nicole; Lim, Sabina; Egger, Jos; Coenen, Anton

    2014-10-01

    While previous studies on the MMPI-2 in patients with schizophrenia and depression have used mixed samples of both early stage and chronic psychiatric patients. Here, it is investigated whether chronicity itself might have a differential effect on the MMPI-2 profiles of these patients and whether demoralization 'associated with long-term illness' affects the scales of the MMPI-2. Thirty long-term patients with schizophrenia, 30 long-term patients with depression, and 30 healthy participants completed the MMPI-2. Groups were compared on Clinical Scales and on the Restructured Clinical (RC) Scales. Patients with schizophrenia differed from patients with depression on 14 MMPI-2 scales and from healthy controls on 10 scales, generally showing mean UT-scores 65, indicating impaired functioning. Demoralization was higher in patients with depression than in patients with schizophrenia and both psychiatric groups differed from the healthy control group. It is concluded that long-term patients with depression show impaired functioning and high demoralization, while long-term patients with schizophrenia surprisingly show near normal functioning and less demoralization. © 2014 Scandinavian Psychological Associations and John Wiley & Sons Ltd.

  3. Illness Uncertainty and Illness Intrusiveness as Predictors of Depressive and Anxious Symptomology in College Students with Chronic Illnesses

    Science.gov (United States)

    Mullins, Alexandria J.; Gamwell, Kaitlyn L.; Sharkey, Christina M.; Bakula, Dana M.; Tackett, Alayna P.; Suorsa, Kristina I.; Chaney, John M.; Mullins, Larry L.

    2017-01-01

    Objective: To examine predictors of psychological functioning in college students with chronic illnesses. Participants: Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between…

  4. Social functioning in children with a chronic illness

    NARCIS (Netherlands)

    Meijer, SA; Sinnema, G; Bijstra, Jan O.; Mellenbergh, GJ; Wolters, W. H. G.

    Behavioural, cognitive, and affective aspects of social functioning of 107 children with a chronic illness were studied. The aim of the study was twofold. (I) to describe peer interaction of children with a chronic illness in comparison with normative data of healthy children; (2) to examine whether

  5. Adolescent construction of mental illness: implication for engagement and treatment.

    Science.gov (United States)

    Chisholm, Katharine; Patterson, Paul; Greenfield, Sheila; Turner, Erin; Birchwood, Max

    2016-05-11

    Understanding how adolescents perceive mental illness is important for clinicians wishing to improve engagement, and for the development of educational programmes and health-behaviour directed policies. The current research aimed to develop a preliminary model of how adolescents perceive mental illness and construct their understanding of mental health. Forty-six participants aged 11-18 from six schools in Birmingham, UK, took part in one of 12 group interviews. A thematic analysis highlighted a dual perception of mental illness. Adolescents discussed stereotypes and extreme examples of illness, but also displayed an insightful understanding of mental distress which had developed through participants' own experiences. Participants attempted to reconcile and negotiate these conflicting perceptions by creating distinctions between concepts of 'craziness' and 'normality', and reported experiencing negative emotions relating to both perceptions of illness. The findings suggest that once media stereotypes have been acknowledged, adolescents demonstrate a relatively sophisticated understanding of mental illness, although one which differed at times from the diagnostic medical model of mental illness. Focusing on individual symptoms, prevalence rates and prior contact adolescents have had with individuals with mental illnesses provides a framework to discuss mental health and ill-health with adolescents. John Wiley & Sons Australia, Ltd.

  6. The diurnal salivary cortisol pattern of adolescents from families with single, ill and healthy parents

    NARCIS (Netherlands)

    Sieh, D.S.; Visser-Meily, J.M.A.; Oort, F.J.; Meijer, A.M.

    2012-01-01

    Objective: Adolescents of single and/or chronically ill parents (target groups) reportedly have elevated psychological stress. However, their salivary cortisol pattern as part of the physiological stress system has not been compared to controls. The aim of this study is to examine differential

  7. The diurnal salivary cortisol pattern of adolescents from families with single, ill and healthy parents

    NARCIS (Netherlands)

    Sieh, Dominik S.; Visser-Meily, Johanna M. A.; Oort, Frans J.; Meijer, Anne Marie

    2012-01-01

    Adolescents of single and/or chronically ill parents (target groups) reportedly have elevated psychological stress. However, their salivary cortisol pattern as part of the physiological stress system has not been compared to controls. The aim of this study is to examine differential outcomes in the

  8. Social support for diabetes illness management: supporting adolescents and caregivers.

    Science.gov (United States)

    Idalski Carcone, April; Ellis, Deborah A; Weisz, Arlene; Naar-King, Sylvie

    2011-10-01

    The aim of this research study was to examine the relationship between 4 sources of social support (support for the adolescent from family, support for the adolescent from friends, support for the caregiver from another adult, and support to the family from the health care provider) and adolescents' diabetes outcomes (illness management behavior and health status) using a diverse sample of urban adolescents. One hundred forty-one adolescents with insulin-managed diabetes and their primary caregivers completed questionnaires assessing social support and illness management behavior. Glucose meters were downloaded and hemoglobin A1c assays were obtained. Structural equation modeling was used to test a model social support informed by social ecological theory. The results of the structural equation modeling indicated that support for the caregiver from another adult was directly and positively related to support for the adolescent from family and indirectly related to better illness management. Support for the adolescent from family was directly related to better diabetes management and, through better management, to better diabetes health. Support to the family from the health care provider was not related to support for the adolescent and support to the adolescent from friends was not related to illness management, as hypothesized. This study identifies a novel target for social support intervention to improve adolescents' illness management behavior-the caregivers of adolescents with diabetes. By enhancing the social support caregivers receive from other adults in their lives, caregivers' ability to support their adolescent children with diabetes might also be improved which, in turn, improves adolescents' illness outcomes.

  9. Chronic illness in the workplace: stigma, identity threat and strain.

    Science.gov (United States)

    McGonagle, Alyssa K; Barnes-Farrell, Janet L

    2014-10-01

    Chronic illness affects a large and growing number of workers in the United States and globally. Stigmatization (devaluation) at work based on chronic illness may be stressful for individuals and therefore may lead to negative psychological consequences (i.e. strains). In order to better understand stressful experiences of stigma for workers with chronic illnesses, a model of stigma-related identity threat (perceptions that one is at risk of being treated negatively at work because of chronic illness) was tested on a sample of 203 working adults with chronic illnesses. The following variables related to workers' perceptions of chronic illness-related identity threat: workers' boundary flexibility (flexibility in managing their work and life), their meta-perceptions of devaluation (perceptions of others' devaluation of them based on illness) and their job self-efficacy (feelings of confidence related to performing their job). In turn, perceptions of identity threat related to both feelings of psychological strain and (lower levels of) perceived work ability. Surprisingly, neither stigma centrality (how fundamental illness is to one's identity) nor supervisor support related to workers' identity threat perceptions. Copyright © 2013 John Wiley & Sons, Ltd.

  10. Cultural expressions of bodily awareness among chronically ill Filipino Americans.

    Science.gov (United States)

    Becker, Gay

    2003-01-01

    To describe Filipino Americans' cultural traditions surrounding bodily awareness, especially how the principle of balance informs their views, and the link to self-management of chronic illness. This qualitative study used semistructured interviews with 85 Filipino Americans between the ages of 46 and 97 years. Volunteers were recruited from numerous health care sites in 1 geographic location in the United States. Respondents had 1 or more chronic illnesses. Taped and transcribed interviews were coded and evaluated for themes. The concept of balance was central to Filipino Americans' portrayal of bodily awareness of signs and symptoms related to chronic illnesses, as well as to actions they took to manage their chronic illnesses. Efforts were made to control chronic illnesses through a variety of self-care practices. Diet posed a particular challenge because of the symbolic importance of food in Filipino culture and its use in the maintenance of social relationships. The ways in which Filipino Americans combine attention to the body, values of balance and harmony, and emphasis on social well-being result in heightened attention to bodily processes. Filipino Americans' emphasis on bodily awareness suggests that this particular cultural strength can be used to enhance chronic illness management. Awareness of the cultural traditions of Filipino Americans can facilitate patient education about how to manage chronic illnesses.

  11. An intelligent partner system for improving chronic illness care

    Directory of Open Access Journals (Sweden)

    Tibor Deutsch

    2003-02-01

    Full Text Available Chronic care consists of a sequence of actions to treat a specific clinical disorder over time as a function of the ways in which illness progresses and patients respond to management actions. Outcomes depend on physicians' skills to select the actions best suited for their patients and competent self-management. This paper presents the architecture of an intelligent partner system (IPS, which helps to provide doctors with relevant data and skills and empowers chronically ill patients with the information and confidence to manage their health wisely. The services of this intelligent system are presented as 'therapies' for the information-processing 'pathologies' associated with traditional chronic illness care.

  12. Return Migration among Elderly, Chronically Ill Bosnian Refugees

    DEFF Research Database (Denmark)

    Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian

    2015-01-01

    Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from...... Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show...

  13. Longitudinal Model Predicting Self-Concept in Pediatric Chronic Illness.

    Science.gov (United States)

    Emerson, Natacha D; Morrell, Holly E R; Neece, Cameron; Tapanes, Daniel; Distelberg, Brian

    2018-04-16

    Although self-concept has been identified as salient to the psychosocial adjustment of adolescents dealing with a chronic illness (CI), little research has focused on its predictors it. Given that depression and parent-child attachment have been linked to self-concept in the population at large, the goal of this study was to evaluate these relationships longitudinally in a sample of adolescents with CI. Using participant data from the Mastering Each New Direction (MEND) program, a 3-month psychosocial, family based intensive outpatient program for adolescents with CI, we employed multilevel modeling to test longitudinal changes in self-concept, as predicted by depressive symptoms and parent-child attachment, in a sample of 50 youths (M age  = 14.56, SD age  = 1.82) participating in MEND. Both "time spent in the program" and decreases in depressive symptoms were associated with increases in self-concept over time. Higher baseline levels of avoidant attachment to both mother and father were also associated with greater initial levels of self-concept. Targeting depressive symptoms and supporting adaptive changes in attachment may be key to promoting a healthy self-concept in pediatric CI populations. The association between avoidant attachment and higher baseline self-concept scores may reflect differences in participants' autonomy, self-confidence, or depression. Limitations of the study include variability in the amount of time spent in the program, attrition in final time point measures, and the inability to fully examine and model all potential covariates due to a small sample size (e.g. power). © 2018 Family Process Institute.

  14. Comunicação do diagnóstico: implicações no tratamento de adolescentes doentes crônicos Communication of the diagnostic: implications on threatening adolescents with chronic illness

    Directory of Open Access Journals (Sweden)

    Viviane Ziebell de Oliveira

    2004-04-01

    Full Text Available O estudo descreve, interpreta e discute aspectos comunicativos presentes na relação médico-paciente no atendimento de adolescentes portadores de doenças orgânicas crônicas. Foram entrevistados 15 médicos (generalistas e especialistas, 18 adolescentes portadores de doenças crônicas (13 com fibrose cística e cinco com outras doenças, 16 mães, e dois pais. As entrevistas semi-estruturadas foram gravadas, transcritas e analisadas segundo os três passos característicos da análise fenomenológica: descrição qualitativa, indução lógica e interpretação. Os resultados discutem as dificuldades da comunicação de más notícias e as implicações de equívocos nestes procedimentos que podem vir a prejudicar a adesão ao tratamento. As conclusões ressaltam o papel do psicólogo na equipe de saúde, oportunizando melhores condições para o desenvolvimento psicológico destes pacientes, auxiliando na comunicação médico-paciente e favorecendo a adesão ao tratamento.This study describes, interprets and discusses communicative aspects of physician-patient relations in the treatment of adolescents with chronic organic illnesses. Fifteen physicians (generalists and specialists, 18 adolescents (13 with cystic fibrosis and five with other chronic organic diseases, 16 mothers and two fathers, were interviewed. Semi-structured interviews were recorded, transcribed and analyzed according to three characteristic phenomenological steps: qualitative description, logical induction and interpretation. The results discuss the difficulties in communicating bad news and the implications of mistakes in such procedures, which may endanger the adhesion to treatment. The conclusions highlight the psychologist part in the health team, offering better conditions to the psychological development of these patients, helping in physician-patient communication and co-operating on treatment adhesion.

  15. Voice and silence in an autoethnography about chronic illness

    African Journals Online (AJOL)

    Kate H

    a lecture by Lori Hartwell, a transplant recipient from America. When she told us of her .... surprises of Photovoice and film in a study of chronic illness. International ... Considering the violence of voicelessness: Censorship and self- censorship ...

  16. Physical Activity and School Absenteeism Due to Illness in Adolescents

    Science.gov (United States)

    de Groot, Renate; van Dijk, Martin; Savelberg, Hans; van Acker, Frederik; Kirschner, Paul

    2017-01-01

    Background: Knowledge about the beneficial role of physical activity (PA) for health and school performance is growing. Studies investigating the link between PA and school absenteeism due to illness are lacking. Therefore, we investigated associations between habitual PA and school absenteeism due to illness in adolescents and explored whether…

  17. Mothers' Attributions Regarding the Behavior of Chronically Ill Children.

    Science.gov (United States)

    Walker, Lynn S.

    Parents of chronically ill children are faced with the difficult task of being vigilant and yet not overprotective of their children. The literature suggests that parents hold a positive bias toward their ill children. Attribution theory gives a framework in which to study parents' ideas about their children's behavior. A study was conducted to…

  18. Vitamin D deficiency in children with chronic illnesses: Predisposing and protecting factors

    OpenAIRE

    Koskivirta, Panu

    2011-01-01

    This thesis assesses clinical differences in patients with low and high vitamin D levels. The factors analyzed included the underlying disease, body size, age, ethnic background, use of vitamin D supplements and the season when the blood sample was taken. Fifty patients with the lowest and 50 patients with the highest vitamin D concentrations were selected from a cohort of 1351 chronically ill children and adolescents who had had their vitamin D status assessed at Children's Hospital. Protect...

  19. Hypothalamic inflammation and food intake regulation during chronic illness

    NARCIS (Netherlands)

    Dwarkasing, J.T.; Marks, D.L.; Witkamp, R.F.; Norren, van K.

    2016-01-01

    Anorexia is a common symptom in chronic illness. It contributes to malnutrition and strongly affects survival and quality of life. A common denominator of many chronic diseases is an elevated inflammatory status, which is considered to play a pivotal role in the failure of food-intake regulating

  20. Impact of childhood chronic illnesses on siblings: a literature review.

    LENUS (Irish Health Repository)

    O' Brien, Irene

    2012-02-01

    BACKGROUND: Childhood illness can have a significant impact on families, particularly on the ill child\\'s siblings. There is a dearth of published literature focusing on the needs of siblings of ill children. AIM: This literature review aims to provide an overview of the current healthcare literature in relation to the impact of childhood chronic illness or disability on siblings. METHOD: A literature review was undertaken by searching the databases CINAHL, PsycINFO, ProQuest and Cochrane Library for relevant articles in English using the search terms: \\'siblings\\

  1. Chronic Pain Among Homeless Persons with Mental Illness.

    Science.gov (United States)

    Vogel, Marc; Frank, Anastasia; Choi, Fiona; Strehlau, Verena; Nikoo, Nooshin; Nikoo, Mohammadali; Hwang, Stephen W; Somers, Julian; Krausz, Michael R; Schütz, Christian G

    2017-12-01

    Chronic pain is an important public health issue. However, characteristics and needs of marginalized populations have received limited attention. Studies on prevalence and correlates of chronic pain among homeless persons are lacking. We assessed chronic pain among homeless persons with mental illness in the At Home/Chez Soi study. Cross-sectional data from a randomized controlled trial on homelessness and mental health. Data collected between 2009 and 2013 in three Canadian cities. One thousand two hundred eighty-seven homeless persons with mental illness. Data on chronic pain and utilization of prescribed and nonprescribed interventions was assessed using a chronic pain screening instrument. Mental illness was diagnosed with the Mini-International Neuropsychiatric Interview. Forty-three percent reported moderate to severe chronic pain, interfering with general daily activities (80%), sleep (78%), and social interactions (61%). Multivariate analysis indicated that increasing age and diagnoses of major depressive disorder, mood disorder with psychotic features, panic disorder, and post-traumatic stress disorder (PTSD) were independent predictors of chronic pain. Chronic pain was further associated with increased suicidality. Among participants reporting chronic pain, 64% had sought medical treatment and 56% treated pain with prescribed drugs, while 38% used illicit drugs for pain relief. Chronic pain is very common among homeless persons with mental illness and affects activities of daily living. Clinicians treating this population should be aware of the common connections between chronic pain, depression, panic disorder, PTSD, and substance use. While the data indicate the contribution of chronic pain to complex treatment needs, they also indicate a clear treatment gap. © 2017 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  2. Examining the Education Gradient in Chronic Illness

    Science.gov (United States)

    Chatterji, Pinka; Joo, Heesoo; Lahiri, Kajal

    2015-01-01

    We examine the education gradient in diabetes, hypertension, and high cholesterol. We take into account diagnosed as well as undiagnosed cases and use methods accounting for the possibility of unmeasured factors that are correlated with education and drive both the likelihood of having illness and the propensity to be diagnosed. Data come from the…

  3. Skin disorders in chronic psychiatric illness.

    NARCIS (Netherlands)

    Mookhoek, E.J.; Kerkhof, P.C.M. van de; Hovens, J.E.; Brouwers, J.R.B.J.; Loonen, A.J.M.

    2010-01-01

    BACKGROUND: Chronic psychiatric patients are prone to develop skin diseases. However, epidemiological data are scarce. OBJECTIVE: To describe the prevalence of skin complaints and dermatological disorders in residential psychiatric patients. METHODS: Ninety-one randomly chosen patients of the

  4. Skin disorders in chronic psychiatric illness

    NARCIS (Netherlands)

    Mookhoek, E. J.; van de Kerkhof, P. C. M.; Hovens, J. E. J. M.; Brouwers, J. R. B. J.; Loonen, A. J. M.

    2010-01-01

    Background Chronic psychiatric patients are prone to develop skin diseases. However, epidemiological data are scarce. Objective To describe the prevalence of skin complaints and dermatological disorders in residential psychiatric patients. Methods Ninety-one randomly chosen patients of the

  5. Physical Activity and School Absenteeism Due to Illness in Adolescents

    OpenAIRE

    de Groot, Renate; van Dijk, Martin; Savelberg, Hans; van Acker, Frederik; Kirschner, Paul

    2017-01-01

    Knowledge about the beneficial role of physical activity (PA) for health and school performance is growing. Studies investigating the link between PA and school absenteeism due to illness are lacking. Therefore we investigated associations between habitual PA and school absenteeism due to illness in adolescents and explored whether mental health and cardiovascular fitness mediated this association. 328 Students in grades 7 and 9 (mean age 13.8 years; 49% boys) were included. PA was measured o...

  6. Florence Nightingale: her Crimean fever and chronic illness.

    Science.gov (United States)

    Dossey, Barbara M

    2010-03-01

    Florence Nightingale's Crimean fever and chronic illness have intrigued historians for more than a century and a half. The purpose of this article is threefold: (a) to discuss the facts that point to the cause of Nightingale's Crimean fever as brucellosis, (b) to show that her debilitating illness for 32 years (1855-1887) was compatible with the specific form of chronic brucellosis, and (c) to present new evidence that she was still having severe symptoms in December 1887, when it was previously felt that she had no severe symptoms after 1870.

  7. Paediatric chronic illness and educational failure: the role of emotional and behavioural problems.

    Science.gov (United States)

    Layte, Richard; McCrory, Cathal

    2013-08-01

    Chronic illness in childhood is associated with worse educational outcomes. The association is usually explained via lowered cognitive development, decreased readiness to learn and school absence. However, this paper examines whether worse psychological adjustment may also play a role. We use data from the Growing Up in Ireland study, a cohort study, which collected data on 8,568 nine-year-old children through the Irish national school system using a two-stage sampling method. Maximum likelihood path analytic models are used to assess the direct effect of child chronic illness on reading and maths test scores and the mediating role of emotional and behavioural problems. In unadjusted analyses, children with a mental and behavioural condition scored 14.5 % points less on reading tests and 16.9 % points less on maths tests than their healthy peers. Children with non-mental and behavioural conditions scored 3 % points less on both tests, a significant difference. Mental and behavioural (OR, 9.58) and other chronic conditions (OR, 1.61) were significantly more likely to have 'high' levels of difficulties on the SDQ. Path analysis models showed that the association between chronic illness and educational test scores was completely mediated by emotional and behavioural problems controlling for school absence and bullying by peers. Child and adolescent chronic illness can have significant effects on educational development and a long-lasting impact on future life-chances. The psychological adjustment of the child is important in mediating the effect of chronic illness on educational outcomes. Interventions should target this developmental pathway.

  8. Economic hardship associated with managing chronic illness: a qualitative inquiry

    Directory of Open Access Journals (Sweden)

    Jan Stephen

    2009-10-01

    Full Text Available Abstract Background Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness. Methods Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66. Content analysis guided the interpretation of data. Results The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in self-management and risk reduction behaviours. Factors exacerbating hardship included ineligibility for government support, co-morbidity, health service flexibility, and health literacy. Participants who were on multiple medications, from culturally and linguistically diverse or Indigenous backgrounds, and/or not in paid employment, experienced economic hardship more harshly and their management of chronic illness was jeopardised as a consequence. Economic hardship was felt among not only those ineligible for government financial supports but also those receiving subsidies that were insufficient to meet the costs of managing long-term illness over and above necessary daily living expenses. Conclusion This research provides insights into the economic stressors associated with managing chronic illness, demonstrating that economic hardship requires households to make difficult decisions between care and basic living expenses. These decisions may cause less than optimal health outcomes and increased costs to the health system. The findings support the necessity

  9. Studies on common illnesses and medical care utilization patterns of adolescents in Hong Kong.

    Science.gov (United States)

    Lau, J T; Yu, A; Cheung, J C; Leung, S S

    2000-12-01

    To estimate the prevalences of common illnesses in Hong Kong adolescents, the sociodemographic and selected risk factors associated with these illnesses, and their health care utilization behavior and attitudes. A cross-sectional questionnaire survey of 3355 participating secondary school students (response rate = 98%). Self-reported 3-month prevalences were obtained for cough/cold/influenza (55.2%), digestive disorders (34.6%), accidental injuries (29.5%), headache/dizziness (23.6%), chronic anxiety/insomnia (20.1%), skin problems (9.5%), asthma (3.8%), liver disease (1.3%), and menstrual pain (13.8% of female students). Self-perceived poor health, smoking, and alcohol consumption were associated with many of these illnesses. Treatment choice depended on the illness suffered (e.g., most students with respiratory problems consulted medical practitioners, whereas most with chronic anxiety/insomnia did not). Many students lacked trust in their doctors, doctor-shopped, relied heavily on self-medication, did not comply with prescribed treatments, would not seek help about medical problems, felt they had insufficient access to health information, and wanted confidential health care. This study examined for the first time the common illnesses and health care utilization patterns of Hong Kong adolescents. Students with chronic anxiety/insomnia were much less likely to seek care, indicating a need for better education on mental health. Efforts to prevent smoking and alcohol consumption among adolescents need to be strengthened. The students' attitudes, poor compliance and help-seeking behaviors suggest suboptimal use of the health care system. Our findings are useful for international comparisons by medical practitioners, health care managers, and researchers.

  10. Impact of childhood chronic illnesses on siblings: a literature review.

    Science.gov (United States)

    O' Brien, Irene; Duffy, Anita; Nicholl, Honor

    Childhood illness can have a significant impact on families, particularly on the ill child's siblings. There is a dearth of published literature focusing on the needs of siblings of ill children. This literature review aims to provide an overview of the current healthcare literature in relation to the impact of childhood chronic illness or disability on siblings. A literature review was undertaken by searching the databases CINAHL, PsycINFO, ProQuest and Cochrane Library for relevant articles in English using the search terms: 'siblings', 'chronic illness', 'disability', 'cancer', 'sibling relations', 'sibling adjustment', 'coping', 'family-centred care', 'sibling interventions', 'camps', 'autism', 'Down's syndrome'. Seventeen research studies in total were reviewed. This review focuses on three sibling groups related to children suffering from autism, cancer and Down's syndrome, and are discussed under the following headings: sibling adjustment; family functioning and sibling's coping resources; and intervention programmes. The literature revealed that siblings of children with Down's syndrome were well adjusted to living with their brother or sister. However, there was conflicting information on the adjustment of siblings of children with cancer and autism. An awareness of the harmful effect that living with childhood illness and disability can have on some siblings is essential to enable healthcare professionals to provide supportive interventions to protect siblings' physical and emotional wellbeing.

  11. Consent to research by mentally ill children and adolescents: The ...

    African Journals Online (AJOL)

    2013-03-01

    Mar 1, 2013 ... permissible in minors be stated in terms of well-defined risk standards. Finally, the ... The assessment of a mentally ill child's or adolescent's capacity to consent to ... 'mental healthcare' may include research; furthermore its repeated ..... Clinical response and risk of reported suicidal ideation and suicide ...

  12. Treating Mental Illness among Diabetic Black Male Adolescents: A Review

    Science.gov (United States)

    Banks, Andrae; Fields, Lashawnda; O'Dwyer, Curtis; Scott, Marquisha Lawrence; Joe, Sean

    2018-01-01

    Objective: To examine randomized controlled trials (RCTs) for treatment evidence for Black male adolescents suffering from comorbid mental illness and diabetes mellitus. Method: A review of the studies published in English-language journals was conducted. Results: We found no RCT focused on Black males with diabetes mellitus Type 2 (DMT2).…

  13. School Psychologists' Role Concerning Children with Chronic Illnesses in Schools

    Science.gov (United States)

    Barraclough, Camille; Machek, Greg

    2010-01-01

    The authors examined the role of school psychologists in working with children with chronic illnesses in the schools. A total of 300 practicing school psychologists in public schools, drawn from the National Association of School Psychologists membership directory, completed a standard mail survey. The survey solicited information on (a) graduate…

  14. Rethinking 'risk' and self-management for chronic illness.

    Science.gov (United States)

    Morden, Andrew; Jinks, Clare; Ong, Bie Nio

    2012-02-01

    Self-management for chronic illness is a current high profile UK healthcare policy. Policy and clinical recommendations relating to chronic illnesses are framed within a language of lifestyle risk management. This article argues the enactment of risk within current UK self-management policy is intimately related to neo-liberal ideology and is geared towards population governance. The approach that dominates policy perspectives to 'risk' management is critiqued for positioning people as rational subjects who calculate risk probabilities and act upon them. Furthermore this perspective fails to understand the lay person's construction and enactment of risk, their agenda and contextual needs when living with chronic illness. Of everyday relevance to lay people is the management of risk and uncertainty relating to social roles and obligations, the emotions involved when encountering the risk and uncertainty in chronic illness, and the challenges posed by social structural factors and social environments that have to be managed. Thus, clinical enactments of self-management policy would benefit from taking a more holistic view to patient need and seek to avoid solely communicating lifestyle risk factors to be self-managed.

  15. Approaches to self-management in chronic illness.

    Science.gov (United States)

    Novak, Marta; Costantini, Lucia; Schneider, Sabrina; Beanlands, Heather

    2013-01-01

    Management of a chronic medical condition is a complex process and requires coordinated action between healthcare providers and patients. This process is further complicated by the fact that an increasing number of patients suffer from multiple chronic conditions. Self-management involves active participation of the patients in the everyday care of the symptoms of their illness(es) and medical treatments, as well as maintaining general health and prevention of progression of medical conditions. Managing the psychosocial consequences of illness is also an important component of self-management. Data have demonstrated that enhancing self-management improves quality of life, coping, symptom management, disability, and reduces healthcare expenditures and service utilization. To foster self-management, potential barriers to implementation as well as facilitators and supports for this approach must be acknowledged. In this article, we review various aspects of self-management in chronic illness, focusing on chronic kidney disease. Better understanding of these concepts will facilitate patient-provider collaboration, improve patient care with increased patient and staff satisfaction, and may ultimately result in better clinical outcomes and enhanced quality of life for both the patients and their families. © 2013 Wiley Periodicals, Inc.

  16. Psychosocial Adaptation to Chronic Illness and Disability: A Conceptual Framework.

    Science.gov (United States)

    Livneh, Hanoch

    2001-01-01

    Reviews the fundamental components inherent in the process of psychosocial adaptation to chronic illness and disability. It is proposed that psychosocial outcomes correspond to specific or global indicators of quality of life and may be categorized according to their functional domains, content areas, technologies or methods of assessment, and…

  17. A School Reentry Program for Chronically Ill Children.

    Science.gov (United States)

    Worchel-Prevatt, Frances F.; Heffer, Robert W.; Prevatt, Bruce C.; Miner, Jennifer; Young-Saleme, Tammi; Horgan, Daniel; Lopez, Molly A.; Frankel, Lawrence; Rae, William A.

    1998-01-01

    Describes a school reintegration program aimed at overcoming the numerous psychological, physical, environmental, and family-based deterrents to school reentry for chronically ill children. The program uses a systems approach to children's mental health with an emphasis on multiple aspects of the child's environment (i.e., family, medical…

  18. Discontinuing treatment in children with chronic, critical illnesses.

    Science.gov (United States)

    Mahon, M M; Deatrick, J A; McKnight, H J; Mohr, W K

    2000-03-01

    Decisions about optimal treatment for critically ill children are qualitatively different from those related to adults. Technological advances over the past several decades have resulted in myriad treatment options that leave many children chronically, critically ill. These children are often technology dependent. With new technologies and new patient populations comes the responsibility to understand how, when, and why these technologies are applied and when technology should not be used or should be withdrawn. Much has been written about ethical decision making in the care of chronically, critically ill adults and newborns. In this article, relevant factors about the care of children older than neonates are described: standards, decision makers, age of the child, and pain management. A case study is used as a mechanism to explore these issues. Dimensions of futility, discontinuing aggressive treatment, and a consideration of benefits and burdens are integrated throughout the discussion to inform nurse practitioner practice.

  19. Chronic conditions, fluid states: chronicity and the anthropology of illness

    National Research Council Canada - National Science Library

    Manderson, Lenore; Smith-Morris, Carolyn

    2010-01-01

    ... in the field, address the concept of chronicity, an idea used to explain individual and local life-worlds, question public health discourse, and consider the relationship between health and the globalizing forces that shape it."--pub. desc.

  20. Assessment of Family Functionality Among the Elderly With Chronic Illness

    Directory of Open Access Journals (Sweden)

    Claudia Balula Chaves

    2013-12-01

    Full Text Available The family APGAR scale was developed by Smilkstein, Ashworth, and Montano (1982. The satisfaction assessment of the elderly with chronic illness regarding family is essential. This study aims to describe the socio-demographic and clinical profile of elderly people with chronic illness and correlate with perceived family support. This is a cross-sectional, analytical study of 294 elderly people (51.4% female, patients at the Health Centre in the district of Viseu - Portugal, diagnosed with chronic illness (77.9% cardiovascular; Mean age was 72.22 ± 6.13, 70.7% were married and 52% had 4 years of schooling; Data was gathered using a questionnaire and the Family APGAR (Adaptation, Partnership, Growth, Affection and Resolve. In relation to family functionality, 18.7% perceive families as highly functional, 26.9% mildly dysfunctional and 54.4% severely dysfunction. There is a statistically significant relationship between the family APGAR and the presence of chronic illness (p < 0.001. We found no statistical significance between the family APGAR and gender (p = 0.26, age (p = 0.26, marital status (p = 0.32 and educational level (p = 0.28. Economic, political and social changes in our society has an impact on the family and the support they provide which is manifested among vulnerable groups, as is the case of an elderly person with chronic illness. Thus, we propose specialised psychological support for this age group which is more vulnerable and without the needed support from within the family.

  1. Support network of adolescents with chronic disease: adolescents' perspective.

    Science.gov (United States)

    Kyngäs, Helvi

    2004-12-01

    The purpose of this study was to describe the support network of adolescents with a chronic disease from their own perspective. Data were collected by interviewing adolescents with asthma, epilepsy, juvenile rheumatoid arthritis (JRA) and insulin-dependent diabetes mellitus (IDDM). The sample consisted of 40 adolescents aged between 13 and 17 years. Interview data were examined using content analysis. Six main categories were established to describe the support network of adolescents with a chronic disease: parents, peers, school, health care providers, technology and pets. Peers were divided into two groups: fellow sufferers and peers without a chronic disease. At school, teachers, school nurses and classmates were part of the support network. Health care providers included nurses, physicians and physiotherapists. Technology was also part of the support network and included four techniques that may be used to communicate: computers, mobile telephones, television and videos. The results provided a useful insight into the social network of adolescents with chronic disease and serve to raise awareness of the problems and opinions experienced by adolescents with this condition.

  2. Using Illness Perceptions to Cluster Chronic Pain Patients

    DEFF Research Database (Denmark)

    Frostholm, Lisbeth; Hornemann, Christina; Ørnbøl, Eva

    2018-01-01

    to participation in a lay-led Chronic Pain Self-Management Program (CPSMP). METHODS: Four hundred and twenty-four participants in a randomized controlled trial on the CPSMP completed a questionnaire on their perceptions of their chronic pain condition at baseline. In addition, they completed a range of health......OBJECTIVES: The aims of our study were (1) To identify possible subgroups of chronic pain sufferers based on their illness perceptions (IPs); (2) To examine whether these subgroups differed in health status and health expenditure, and (3) To examine whether the subgroups differed in their response...... status measures at baseline and three months after end of participation in the CPSMP. Health care expenditure was obtained from Danish health registers. We performed cluster analyses to identify possible subgroups based on the participants' perceptions of their chronic pain condition. RESULTS: Cluster...

  3. Support efforts for caregivers of chronically ill persons

    DEFF Research Database (Denmark)

    Glasdam, S.; Timm, Helle Ussing; Vittrup, Rikke

    2010-01-01

    An increasing number of people today live with chronic diseases that affect their quality of life and that of their families. Health professionals confirm this finding based on their clinical interventions targeting families of chronically ill patients. The aim of this study was to describe...... the interventions to have no effect, whereas effects were found in the other 22 studies in one or more areas, including burden, knowledge level, mastering skills, and satisfaction. The literature review concludes that the impact of these interventions is neither unique nor significant. The defined concepts...

  4. Patients' and partners' perspectives of chronic illness and its management.

    Science.gov (United States)

    Checton, Maria G; Greene, Kathryn; Magsamen-Conrad, Kate; Venetis, Maria K

    2012-06-01

    This study is framed in theories of illness uncertainty (Babrow, A. S., 2007, Problematic integration theory. In B. B. Whaley & W. Samter (Eds.), Explaining communication: Contemporary theories and exemplars (pp. 181-200). Mahwah, NJ: Erlbaum; Babrow & Matthias, 2009; Brashers, D. E., 2007, A theory of communication and uncertainty management. In B. B. Whaley & W. Samter (Eds.), Explaining communication: Contemporary theories and exemplars (pp. 201-218). Mahwah, NJ: Erlbaum; Hogan, T. P., & Brashers, D. E. (2009). The theory of communication and uncertainty management: Implications for the wider realm of information behavior. In T. D. Afifi & W. A. Afifi (Eds.), Uncertainty and information regulation in interpersonal contexts: Theories and applications, (pp. 45-66). New York, NY: Routledge; Mishel, M. H. (1999). Uncertainty in chronic illness. Annual Review of Nursing Research, 17, 269-294; Mishel, M. H., & Clayton, M. F., 2003, Theories of uncertainty. In M. J. Smith & P. R. Liehr (Eds.), Middle range theory for nursing (pp. 25-48). New York, NY: Springer) and health information management (Afifi, W. A., & Weiner, J. L., 2004, Toward a theory of motivated information management. Communication Theory, 14, 167-190. doi:10.1111/j.1468-2885.2004.tb00310.x; Greene, K., 2009, An integrated model of health disclosure decision-making. In T. D. Afifi & W. A. Afifi (Eds.), Uncertainty and information regulation in interpersonal contexts: Theories and applications (pp. 226-253). New York, NY: Routledge) and examines how couples experience uncertainty and interference related to one partner's chronic health condition. Specifically, a model is hypothesized in which illness uncertainty (i.e., stigma, prognosis, and symptom) and illness interference predict communication efficacy and health condition management. Participants include 308 dyads in which one partner has a chronic health condition. Data were analyzed using structural equation modeling. Results indicate that there

  5. Mind-body medicine and the treatment of chronic illnesses

    OpenAIRE

    Rudaz, M; Ledermann, T; Witt, Claudia M

    2017-01-01

    Mind-body medicine is a holistic approach that aims to increase a healthy life style of people and their resilience. Practically, mind-body medicine encompasses intervention methods such as mindfulness, physical exercise, coping with stress, or cognitive restructuring. Mind-body medicine has proven effective for a variety of chronic illnesses, especially in combination with conventional medicine. The present article introduces basic concepts of mind-body medicine including aspects of mindfuln...

  6. Return Migration among Elderly, Chronically Ill Bosnian Refugees

    DEFF Research Database (Denmark)

    Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian

    2015-01-01

    Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from D...... of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO's definition of health, health was indeed one of the most important factors when the decision to return was made....... that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence......Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from...

  7. Contraception for adolescents with chronic rheumatic diseases

    Directory of Open Access Journals (Sweden)

    Benito Lourenço

    Full Text Available ABSTRACT Contraception is an important issue and should be a matter of concern in every medical visit of adolescent and young patients with chronic rheumatic diseases. This narrative review discusses contraception methods in adolescents with juvenile systemic lupus erythematosus (JSLE, antiphospholipid syndrome (APS, juvenile idiopathic arthritis (JIA and juvenile dermatomyositis (JDM. Barrier methods are safe and their use should be encouraged for all adolescents with chronic rheumatic diseases. Combined oral contraceptives (COC are strictly prohibited for JSLE and APS patients with positive antiphospholipid antibodies. Reversible long-acting contraception can be encouraged and offered routinely to the JSLE adolescent patient and other rheumatic diseases. Progestin-only pills are safe in the majority of rheumatic diseases, although the main concern related to its use by adolescents is poor adherence due to menstrual irregularity. Depot medroxyprogesterone acetate injections every three months is a highly effective contraception strategy, although its long-term use is associated with decreased bone mineral density. COC or other combined hormonal contraceptive may be options for JIA and JDM patients. Oral levonorgestrel should be considered as an emergency contraception method for all adolescents with chronic rheumatic diseases, including patients with contraindication to COC.

  8. “What we want”: chronically ill adolescents’ preferences and priorities for improving health care

    Directory of Open Access Journals (Sweden)

    van Staa A

    2011-06-01

    Full Text Available AnneLoes van Staa1,2, Susan Jedeloo1, Heleen van der Stege1, On Your Own Feet Research Group1,31Expertise Center Transitions of Care, Rotterdam University, 2Institute of Health Policy and Management, Erasmus University Rotterdam, 3Department of Pediatrics, Sophia Children’s Hospital, Erasmus MC University Medical Center, Rotterdam, The NetherlandsBackground: As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents’ preferences regarding providers' qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected.Methods: This research was a sequential mixed methods study in adolescents aged 12–19 years with various chronic conditions treated in a university children’s hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990. Emerging qualitative themes were transformed into questionnaire items.Results: Having “a feeling of trust” and “voice and choice” in the hospital were central to these adolescents. Regarding providers’ qualities, “being an expert” and “being trustworthy and honest” were ranked highest, followed by "being caring and understanding”, "listening and showing respect", and “being focused on me”. Regarding outpatient consultations, preferences were ranked as follows: “answering all questions”; “attending to my and my parents’ needs”; and “clear communication”, while “limited waiting times” and “attractive outpatient surroundings” scored lowest. Regarding hospitalization, adolescents most preferred to “avoid pain and discomfort”, “keep in touch with home”, and “be entertained”, while “being hospitalized with peers” and “being heard

  9. Support as a crucial predictor of good compliance of adolescents with a chronic disease.

    Science.gov (United States)

    Kyngas, H; Rissanen, M

    2001-11-01

    The purpose of this study was to describe the factors that predict compliance among adolescents with a chronic illness. The data were collected by questionnaires from adolescents with asthma, epilepsy, juvenile rheumatoid arthritis (JRA) and insulin-dependent diabetes mellitus (IDDM). Groups of 300 adolescents with these illnesses were selected from the Finnish Social Insurance Institution's register, giving a total study series of 1200 individuals. The final response percentage was 88% (n = 1061). The data were analysed with the SPSS software. Logistic regression was used to indicate the predictors of good compliance. The compliance of adolescents with a chronic disease was predicted on the basis of support from parents, nurses, physicians and friends, as well as motivation, energy and willpower. The most powerful predictor was support from nurses. The likelihood of adolescents supported by nurses complying with health regimens was 7.28-fold compared to the adolescents who did not receive support from nurses. The next powerful predictor was energy and willpower. Adolescents who had the energy and willpower to take care of themselves complied with health regimens with a 6.69-fold likelihood compared to the adolescents who did not have energy and willpower. Adolescents who had good motivation were 5.28 times more likely to comply than the adolescents who did not have motivation. Support from parents, physicians and friends similarly predicted good compliance with health regimens.

  10. A narrative literature review regarding job retention strategies for people with chronic illnesses.

    Science.gov (United States)

    Koch, Lynn C; Rumrill, Phillip D; Conyers, Liza; Wohlford, Sarah

    2013-01-01

    Job retention is a major concern for individuals with chronic illnesses, who represent a rapidly growing vocational rehabilitation (VR) consumer population. The purpose of this article is to examine selected job retention considerations for consumers with chronic illnesses. The authors (a) describe distinguishing characteristics of chronic illnesses in terms of populations affected and psychosocial implications, (b) discuss the vocational implications of chronic illnesses, (c) provide general considerations for the provision of job retention services, and (d) examine job retention strategies aimed at improving employment outcomes for individuals with chronic illnesses.

  11. Mediators for internalizing problems in adolescents of parents with chronic medical condition

    NARCIS (Netherlands)

    Sieh, D.S.; Oort, F.J.; Visser-Meily, J.M.A.; Meijer, A.M.

    2014-01-01

    Parents’ chronic medical condition (CMC) is related to internalizing problem behavior in adolescents. Following the transactional stress and coping (TSC) model of Hocking and Lochman, our study examines whether the effect of illness and demographic parameters on the child’s internalizing problems is

  12. Chronic physical illness, psychiatric disorder and disability in the workplace.

    Science.gov (United States)

    Dewa, C S; Lin, E

    2000-07-01

    While agreement is growing that mental illness burdens the North American economy, how it impacts productivity--particularly compared to physical illness--is unclear. Hypothesizing that lost work days are only the tip of the iceberg, we also examined the association of mental and chronic physical illness with partial work days and days requiring extra effort to function. Data from 4225 employed individuals, aged 18-54, were analyzed. These were a subset of respondents to the Ontario Health Survey's Mental Health Supplement, a 1990/91 epidemiologic survey of households across Ontario, Canada. Psychiatric disorder was assessed using the University of Michigan' modification of WHO's Composite International Diagnostic Interview (UM-CIDI). Similar to US reports, professional/managerial groups had lower rates of affective and anxiety disorders and fewer disability days compared to the rest of the workforce. However, no single occupational group was consistently at greater risk for either physical or psychiatric problems. Even after accounting for sociodemographic characteristics and work conditions, mental and physical status had clear, but different, impacts on productivity. Physical conditions alone had a fairly constant effect across all types of disability days and were the largest contributor to total work day loss. They also significantly impacted partial and extra effort days but were far less important than conditions involving a mental disorder. Respondents with mental health problems, either alone or in combination with physical illnesses, appeared more likely to go to work but to require greater effort to function. WHO projects that mental illness will become the second most important cause of global disease burden in the next century. Our findings suggest that among working individuals, it affects productivity more subtly than does physical illness. However, with an estimated eight percent of Ontario's workforce experiencing more than two months annually of

  13. Chronic sleep reduction in adolescents

    NARCIS (Netherlands)

    Dewald-Kaufmann, J.F.

    2012-01-01

    Based on the results of this thesis, it can be concluded that sleep problems and chronic sleep reduction have a high impact on adolescents’ daytime functioning. Additionally, this research shows that gradual sleep extension can improve adolescents’ sleep and especially their chronic sleep reduction.

  14. Family caregivers: Competence in the care of the chronically ill

    Directory of Open Access Journals (Sweden)

    Olga Marina Vega Angarita

    2018-01-01

    Full Text Available Introduction: Because of the high demand and costs of care, chronic diseases have shown an increasing number of caregivers who develop their role without the required training and skill. Objective: To describe the capacity for home care of caregivers of patients with chronic illness in a service provider institution of San José de Cúcuta. Materials and methods: Descriptive quantitative cross-sectional study, developed in the fi rst half of 2017. The sample was composed by 360 caregivers of patients with chronic disease. We used the instruments developed by the Chronic Patient Care Group of the Faculty of Nursing of the National University of Colombia called: GCPC-UN-C © - technical characterization chart for family caregivers of patients with chronic non-transferable disease and the instrument “Caring” - short version to measure the competence of care at home. Results: In the study, low and medium levels of competence of the caregivers were reported in the exercise of their role, and the categories Knowledge and Enjoyment (Welfare were more affected. It is important to note that caregivers with a high level of competence were not reported. Conclusion: The results show that the need for nursing intervention in strengthening the competence of caregivers remains an important constant of professional performance.

  15. Cannabis use during adolescent development: susceptibility to psychiatric illness

    Directory of Open Access Journals (Sweden)

    Benjamin eChadwick

    2013-10-01

    Full Text Available Cannabis use is increasingly pervasive among adolescents today, even more common than cigarette smoking. The evolving policy surrounding the legalization of cannabis reaffirms the need to understand the relationship between cannabis exposure early in life and psychiatric illnesses. Cannabis contains psychoactive components, notably Δ9-tetrahydrocannbinol (THC, that interfere with the brain’s endogenous endocannabinoid system, which is critically involved in both pre- and post-natal neurodevelopment. Consequently, THC and related compounds could potentially usurp normal adolescent neurodevelopment, shifting the brain’s developmental trajectory towards a disease-vulnerable state, predisposing early cannabis-users to motivational, affective and psychotic disorders. Numerous human studies, including prospective longitudinal studies, demonstrate that early cannabis use is associated with major depressive disorder and drug addiction. A strong association between schizophrenia and cannabis use is also apparent, especially when considering genetic factors that interact with this environmental exposure. These human studies set a foundation for carefully controlled animal studies which demonstrate similar patterns following early cannabinoid exposure. Given the vulnerable nature of adolescent neurodevelopment and the persistent changes that follow early cannabis exposure, the experimental findings outlined should be carefully considered by policymakers. In order to fully address the growing issues of psychiatric illnesses and to ensure a healthy future, measures should be taken to reduce cannabis use among teens.

  16. The Impact of Chronic Illness on Psychosocial Stages of Human Development.

    Science.gov (United States)

    Lapham, E. Virginia, Ed.; Shevlin, Kathleen M., Ed.

    This book addresses critical issues regarding the impact of chronic illness and disability on human development. It was written for health care professionals who help chronically ill and disabled persons deal with the psychological and social as well as the biological aspects of their illness or disability. An expanded version of Erik Erikson's…

  17. [The transition process from paediatric to adult services: A perspective from hospitalised adolescent sufferers of chronic diseases].

    Science.gov (United States)

    Inostroza Quezada, Carolina; Correa Venegas, María Loreto; Besoain Arrau, Carolina; Reinoso Medinelli, Alejandro; Velarde Lizama, Macarena; Valenzuela Mujica, María Teresa; Bedregal García, Paula; Zubarew Gurtchin, Tamara

    2016-01-01

    Chronic illnesses during adolescence are a big challenge for the patient, his or her family, and health care providers. The transition from paediatric health services to adult health services involves a programmed and planned transfer process of adolescent sufferers of chronic illnesses, in order to maintain a high quality of life and bio-psycho-social development. There is currently no transition model. The objective of the study is to understand the transition process from the perspective of hospitalised adolescents to collaborate towards the design of a model that meets the needs studied. Semi-structured interviews with 13 adolescent sufferers of chronic illnesses, hospitalised in two healthcare centres in Santiago, Chile, in one analytical-relational study, supported by qualitative methodology. In the analysis, 5 major themes stand out: experience of living with the illness, the importance of the doctor-patient relationship, the concept of limited autonomy to the pharmacology, the absence of the transition process as such, and the identification of barriers and needs for an adequate transition. This study is new in Chile in that it explores the phenomenom of the transition of adolescents with chronic illnesses. It emphasises the need to reinforce the concept of self-care and autonomy from early stages of care, and the importance of early planning of a healthy transition process, in accordance to the detected needs of the adolescents themselves. Copyright © 2015. Publicado por Elsevier España, S.L.U.

  18. Chronic unremitting headache associated with Lyme disease-like illness

    Directory of Open Access Journals (Sweden)

    Pedro Andre Kowacs

    2013-07-01

    Full Text Available The Brazilian Lyme-disease-like illness (BLDLI or Baggio-Yoshinari syndrome is a unique zoonosis found in Brazil. It reproduces all the clinical symptoms of Lyme disease except for the high frequencies of relapse and the presence of autoimmune manifestations. Two cases of borreliosis manifesting with unremitting headache, which is a symptom associated with late-stage BLDLI, were presented. Clinical, therapeutic, and prognostic aspects of the BLDLI and its associated headaches were showed and discussed in this article. BLDLI diagnosis requires additional attention by physicians, since the disease has a tendency to progress to the late, recurrent stage or the chronic form, and the associated headache can be confused with chronic primary headache or with analgesic-overuse one. Special attention should be paid to patients with headaches who have traveled to endemic areas.

  19. Does Mental Illness Stigma Contribute to Adolescent Standardized Patients' Discomfort With Simulations of Mental Illness and Adverse Psychosocial Experiences?

    Science.gov (United States)

    Hanson, Mark D.; Johnson, Samantha; Niec, Anne; Pietrantonio, Anna Marie; High, Bradley; MacMillan, Harriet; Eva, Kevin W.

    2008-01-01

    Objective: Adolescent mental illness stigma-related factors may contribute to adolescent standardized patients' (ASP) discomfort with simulations of psychiatric conditions/adverse psychosocial experiences. Paradoxically, however, ASP involvement may provide a stigma-reduction strategy. This article reports an investigation of this hypothetical…

  20. Parental Involvement of Mothers with Chronic Illness and Children's Academic Achievement

    Science.gov (United States)

    Chen, Yung-Chi; Fish, Marian C.

    2013-01-01

    This study examined how maternal chronic illnesses may affect children's academic achievement through parental involvement. A total of 189 mothers diagnosed with chronic illnesses, such as multiple sclerosis, diabetes, cancer, HIV/AIDS, chronic pain, asthma, myelodysplasic syndrome, and fibromyalgia, and with a child in middle school or high…

  1. Prevalence of chronic diseases in adolescents with intellectual disability

    NARCIS (Netherlands)

    Oeseburg, B.; Jansen, D. E. M. C.; Dijkstra, G. J.; Groothoff, J. W.; Reijneveld, S. A.

    2010-01-01

    Valid community-based data on the prevalence of chronic diseases in adolescents (12-18 years) with intellectual disability (ID-adolescents) are scarce. The aim of this study was to assess the prevalence rates and the nature of chronic diseases in a population of ID-adolescents and to compare them

  2. Psychopathology and self-esteem in chronic illness.

    Science.gov (United States)

    Pradhan, Prakash V; Shah, Henal; Rao, Pradeep; Ashturkar, Dhananjay; Ghaisas, Pradnya

    2003-02-01

    To evaluate psychopathology and self-esteem in chronic illness. 60 children and their parents were selected to participate in an open study. 30 children had epilepsy and the other 30 had thalassemia. Both the groups consisted of children randomly selected from the Epilepsy Clinic and Thalassemia Centre respectively, of a teaching general hospital. The children and their parents were interviewed and also rated on Childhood Psychopathology Measurement Schedule (CPMS) and Rosenberg's self esteem scale. The data was analysed using Pearson's chi square test and Pearson's correlation coefficient. The children were seen to have high psychopathology on CPMS (average score: thalassemia group = 28.56, epilepsy group = 26.06). Depression was the subscale with the maximum elevation in both groups. Behavior problems were high in epilepsy. In addition, sadness and disinterest in life were common symptoms in thalassemia while irritability and panic were high in epilepsy. Children with epilepsy perceived a change in lifestyle after diagnosis. Self-esteem was moderately affected in both groups and this affected compliance with treatment in thalassemia. Chronic illness affects psychological health and self esteem in children. Hence, in addition to the physical aspects it is necessary also, to focus on the psychological health of the child in order to ensure compliance and thus treat the child comprehensively.

  3. Illness cognitions as a pathway between religiousness and subjective health in chronic cardiac patients.

    Science.gov (United States)

    Karademas, Evangelos C

    2010-03-01

    The aim of this study was to examine the role of illness cognitions as a possible pathway between religiousness and subjective health in chronic illness. A sample of 135 chronic cardiac patients completed questionnaires about intrinsic religiousness, frequency of church service attendance, basic illness cognitions (i.e., helplessness, illness acceptance, perceived benefits), and physical and emotional well-being. According to the results, religiousness was significantly associated with subjective health. However, this relationship was indirect, with helplessness and illness acceptance serving as mediators between intrinsic religiousness and health. This finding is significant for understanding the complex relation of religiousness to chronic patients' well-being.

  4. Adolescent Mental Health Consumers' Self-Stigma: Associations with Parents' and Adolescents' Illness Perceptions and Parental Stigma

    Science.gov (United States)

    Moses, Tally

    2010-01-01

    Currently, little is known about adolescents' self-stigma experiences as mental health (MH) treatment recipients. Hence, this study addresses the following two questions: (a) what are adolescents' and parents' perceptions of stigma and perceptions of the cause, controllability, and anticipated outcome (illness perceptions) of adolescents' MH…

  5. The Chronic Illness Problem Inventory as a measure of dysfunction in chronic pain patients.

    Science.gov (United States)

    Romano, J M; Turner, J A; Jensen, M P

    1992-04-01

    Assessment of physical and psychosocial dysfunction is recognized as essential in chronic pain patient evaluation. One instrument, the Sickness Impact Profile (SIP), has demonstrated good reliability and validity as a measure of dysfunction among chronic pain patients. An alternate measure, the Chronic Illness Problem Inventory (CIPI), is shorter and more easily scored than the SIP, but as yet has not been applied widely to chronic pain problems. In the present study, 95 chronic low back pain patients completed the SIP, the CIPI, activity diaries, the McGill Pain Questionnaire (MPQ), and the Center for Epidemiologic Studies-Depression scale (CES-D), before participating in a chronic pain treatment study. Overt pain behaviors were also coded from videotapes of a standardized assessment protocol. Seventy-five subjects completed the measures post-treatment. The results indicate that although the SIP and the CIPI are significantly correlated and appear to be measuring similar constructs, there is also substantial unshared variance between them, suggesting that they may tap somewhat different aspects of dysfunction in chronic pain. The CIPI shows promise as a useful alternative measure of dysfunction in chronic low back pain patients, but requires further validation for this purpose.

  6. Chronical Illness and the Issue of Context in Dietary Counselling

    DEFF Research Database (Denmark)

    Kristensen, Søren Tange

    food and eating issues are taken into account in dietary counselling and how this reflects broader epistemological and political issues related to the prevention and management of chronic illness. A concluding statement from the study is that in order to empower clients, the complexity and contextual......In dietary counselling contextual food and eating issues are increasingly considered important when trying to promote dietary change. Besides transferring knowledge on healthy eating based on an assessment of the nutritional adequacy of clients diet priority is given to obtain the full dietary...... story including contextual issues concerning relationships, family values, culture, finances, and personal beliefs. The focus on contextual issues seems to reflect a holistic and empowering approach to the promotion of health. Also, the consideration of contextual issues can be seen as essential...

  7. Living with a mentally ill parent: exploring adolescents' experiences and perspectives.

    Science.gov (United States)

    Trondsen, Marianne V

    2012-02-01

    Although a considerable body of research has described the implications of parental mental illness, the perspectives of children and adolescents have rarely been addressed. In this article, I explore adolescents' experiences in everyday life, based on an action-oriented study of a Norwegian online self-help group for adolescents (aged 15 to 18) with mentally ill parents. The analysis was conducted through participant observation of the group for 2 years. The adolescents experienced a variety of difficult challenges related to their parent's mental illness: lack of information and openness; unpredictability and instability; fear; loneliness; and loss and sorrow. However, they also discussed strategies for active management of the challenges arising from the family situation. I argue that these adolescents can be understood as vulnerable as well as active participants in managing their everyday lives. I emphasize the importance of including perspectives of children and adolescents in further research so as to improve health care for families with parental mental illness.

  8. Positioning, telling, and performing a male illness: Chronic prostatitis/chronic pelvic pain syndrome.

    Science.gov (United States)

    Wood, Nicholas; Qureshi, Annum; Mughal, Fahim

    2017-11-01

    There is a paucity of illness accounts of men with chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), despite a significant level of prevalence and burden of disease. This qualitative study thus elicited twelve accounts from men suffering with CP/CPPS. Narrative analysis was employed, focusing primarily on narrative content. Three major narrative themes were identified: (1) Medical stories: Blame and shame; (2) The Erratic nature of CP/CPPS; and (3) Ongoing struggles for coping and cures and the Search for meaning. Recommendations were made for health care providers and increasing the internal agency, support and activism of men with this debilitating condition. Statement of contribution What is already known on this subject? One qualitative account of this male illness (CP/CPPS) exists: an IPA study. Five cross-sectional themes: (1) Need for repeated confirmation - disease not life-threatening nor leading inexorably towards cancer; (2) Disturbed sleep and fatigue; (3) Concealing pain and problems - 'normalizing'; (4) Enduring pain by performing activities; and (5) Abrupt mood swings and limited sociality. What does this study add? Narrative analysis adds information as to how this illness is managed and survived over time. It challenges the findings (above) by providing an insider perspective. Novel narrative themes include meaning-making amongst others. Masculine performance and experiences are also crucial to this stigmatized illness. © 2017 The British Psychological Society.

  9. Social position of adolescents with chronic digestive disorders.

    NARCIS (Netherlands)

    Calsbeek, H.; Rijken, M.; Bekkers, M.J.T.M.; Kerssens, J.J.; Dekker, J.; Berge Henegouwen, G.P. van

    2002-01-01

    OBJECTIVE : To investigate the consequences of having a chronic digestive disorder on the social position of adolescents. METHODS : Five diagnostic groups, including inflammatory bowel disease (IBD), chronic liver diseases, congenital digestive disorders, coeliac disease and food allergy (total n =

  10. Social position of adolescents with chronic digestive disorders

    NARCIS (Netherlands)

    Calsbeek, H; Rijken, M; Bekkers, MJTM; Kerssens, JJ; Dekker, J; Henegouwen, GPV

    Objective To investigate the consequences of having a chronic digestive disorder on the social position of adolescents. Methods Five diagnostic groups, including inflammatory bowel disease (I BID), chronic liver diseases, congenital digestive disorders, coeliac disease and food allergy (total n =

  11. [Impact of chronic illness on hospital nursing workloads].

    Science.gov (United States)

    Vallés, S; Valdavida, E; Menéndez, C; Natal, C

    To evaluate the short-term impact of chronic illness in hospital units and to establish a method that allows nursing workloads to be adapted according to the care needs of patients. A descriptive study of the evolution of workloads of nursing staff associated with the care needs of patients between 1 July 2014 and 30 June 2016, in a county hospital. The care needs of the patients were assessed daily using an adaptation of the Montesinos scheme. The estimated times of nursing care and auxiliary nursing required by the patients, based on their level of dependence for time distribution, were based on the standards and recommendations of the Ministry of Health, Social Services and Equality. During the study period, there was a change in the patient care needs, with no increase in activity, which resulted in an increase in the nursing staffing needs of 1,396 theoretical hours per year. This increase implies an increase in the workforce of 5 nurses in the second period. In the study period, the needs for direct nursing care increased by 7%, this increase is not related to the increase in activity, but to the level of dependency of the patients with chronic diseases. This increase occurred in both medical and surgical units. Copyright © 2017 SECA. Publicado por Elsevier España, S.L.U. All rights reserved.

  12. 77 FR 64597 - Proposed Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

    Science.gov (United States)

    2012-10-22

    ... of Chronic Gastrointestinal Illness in Persian Gulf Veterans (Irritable Bowel Syndrome--Diarrhea... information needed to evaluate chronic gastrointestinal disorders in Persian Gulf War Veterans. DATES: Written... Gastrointestinal Illness in Persian Gulf Veterans, VA Form 10-21092c. OMB Control Number: 2900-0742. Type of Review...

  13. 78 FR 6404 - Agency Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

    Science.gov (United States)

    2013-01-30

    ... of Chronic Gastrointestinal Illness in Persian Gulf Veterans) Activities Under OMB Review AGENCY.... Survey of Chronic Gastrointestinal Illness in Persian Gulf Veterans, VA Form 10-21092a. b. VA Research...: Approximately 25 percent military troops who were deployed in the first Persian Gulf War returned with...

  14. Siblings of children with a chronic illness: a meta-analysis.

    Science.gov (United States)

    Sharpe, Donald; Rossiter, Lucille

    2002-12-01

    To review the literature pertaining to the siblings of children with a chronic illness. Fifty-one published studies and 103 effect sizes were identified and examined through meta-analysis. We found (1) a modest, negative effect size statistic existed for siblings of children with a chronic illness relative to comparison participants or normative data; (2) heterogeneity existed for those effect sizes; (3) parent reports were more negative than child self-reports; (4) psychological functioning (i.e., depression, anxiety), peer activities, and cognitive development scores were lower for siblings of children with a chronic illness compared to controls; and (5) a cluster of chronic illnesses with daily treatment regimes was associated with negative effect statistics compared to chronic illnesses that did not affect daily functioning. More methodologically sound studies investigating the psychological functioning of siblings of children with a chronic illness are needed. Clinicians need to know that siblings of children with a chronic illness are at risk for negative psychological effects. Intervention programs for the siblings and families of children with a chronic illness should be developed.

  15. Life after the Shock! The Impact on Families of Caring for Young Children with Chronic Illness

    Science.gov (United States)

    Ashton, Jean

    2004-01-01

    The stresses experienced by most families include limitations on time, conditions of employment, financial burdens and sibling rivalry. For the families of a child with a chronic illness, these stresses are often compounded, making family functioning problematic. Chronic illness is marked by permanency and the need for ongoing vigilance with…

  16. Thinking positively about chronic illness: An exploration of optimism, illness perceptions and well-being in patients with Parkinson's disease.

    Science.gov (United States)

    Hurt, Catherine S; Burn, David J; Hindle, John; Samuel, Mike; Wilson, Ken; Brown, Richard G

    2014-05-01

    Holding positive beliefs about illness and having an optimistic outlook have been associated with increased well-being across a range of health conditions. However, research has indicated that being very optimistic may not actually be beneficial, and holding a realistic attitude is more adaptive in some forms of chronic illness, for example, Parkinson's disease (PD). This study aimed to explore the nature of relationships between illness perceptions, optimism and well-being: specifically, whether a linear or non-linear relationship best described the data. Additionally, the proposed moderating effect of optimism on the relationship between illness perceptions and well-being was tested. A total of 109 participants with idiopathic PD completed questionnaire measures of illness perception, optimism, mood and health-related quality of life (HRQoL). Multiple regression analyses were used to explore relationships between illness perceptions, optimism, mood and HRQoL. The potential curvilinear effects of illness perceptions and optimism were modelled using squared variables and linear and quadratic curve estimation. Holding positive illness perceptions predicted better well-being. Some evidence for a non-linear relationship between optimism and mood was found. Optimism had a significant moderating effect on the relationship between specific illness perceptions and outcome. Optimism appears to provide protection against some negative perceptions of illness and was associated with better mood and HRQoL. The findings indicate that specific illness perceptions may be beneficial targets for therapy. Therapeutic interventions should focus on enhancing positive perceptions of PD but potentially more importantly general optimistic attitude to maximize well-being. What is already known on this subject? Positive illness perceptions and high optimism are associated with better well-being in a range of conditions, both chronic and acute. Preliminary studies suggest that in chronic

  17. Normalization behaviours of rural fathers living with chronically-ill children: an Australian experience.

    Science.gov (United States)

    Peck, Blake; Lillibridge, Jennifer

    2005-03-01

    This article reports findings from a larger qualitative study conducted to gain insight into the experience of fathers living with their chronically-ill children in rural Victoria, Australia. Data were collected via unstructured interviews with four fathers. The findings presented in this article explore the phenomena of normalization for fathers within the chronic illness experience. Fathers described normalizing the experience of living with their chronically-ill child as involving a combination of various coping strategies and behaviours including: (1) accepting the child's condition, (2) changing expectations, (3) focusing energies on a day-to-day basis, (4) minimizing knowledge-seeking behaviours, and (5) engaging in external distraction activities. Findings highlight the complex and unique normalization strategies these men utilized and contribute to knowledge and understanding of the complex nature of raising a chronically-ill child in rural Australia and provide a sound basis upon which to guide an ongoing and holistic assessment of fathers with chronically-ill children.

  18. The duality of health technology in chronic illness: how designers envision our future.

    Science.gov (United States)

    Lehoux, Pascale

    2008-06-01

    This essay critically explores the role of technological innovation in the constitution of chronic states and illness. Drawing on the co-construction of technology and society perspective, it focuses more specifically on the way in which innovation designers envisage the enhancement of the chronically ill and build certain kinds of socio-technical configuration to deal with chronic illness. Using the case of ;intelligent distance patient monitoring' as an illustration, the paper argues that technology creates as much as it solves the problem of chronic illness. Technology is recursively embedded in chronic illness and it generates dual effects: it constrains and sustains users' daily practices. Only by recognizing technology's duality and eventually transcending it will research and policy initiatives be able to deal creatively and responsibly with the design of our future health experiences.

  19. Improving quality in Medicaid: the use of care management processes for chronic illness and preventive care.

    Science.gov (United States)

    Rittenhouse, Diane R; Robinson, James C

    2006-01-01

    Care management processes (CMPs), tools to improve the efficiency and quality of primary care delivery, are particularly important for low-income patients facing substantial barriers to care. To measure the adoption of CMPs by medical groups, Independent Practice Associations, community clinics, and hospital-based clinics in California's Medicaid program and the factors associated with CMP adoption. Telephone survey of every provider organization with at least 6 primary care physicians and at least 1 Medi-Cal HMO contract, Spring 2003. One hundred twenty-three organizations participated, accounting for 64% of provider organizations serving Medicaid managed care in California. We surveyed 30 measures of CMP use for asthma and diabetes, and for child and adolescent preventive services. The mean number of CMPs used by each organization was 4.5 for asthma and 4.9 for diabetes (of a possible 8). The mean number of CMPs for preventive services was 4.0 for children and 3.5 for adolescents (of a possible 7). Organizations with more extensive involvement in Medi-Cal managed care used more CMPs for chronic illness and preventive service. Community clinics and hospital-based clinics used more CMPs for asthma and diabetes than did Independent Practice Associations (IPAs), and profitable organizations used more CMPs for child and adolescent preventive services than did entities facing severe financial constraints. The use of CMPs by Medicaid HMOs and the presence of external (financial and nonfinancial) incentives for clinical performance were strongly associated with use of care management by provider organizations. Physician and provider organizations heavily involved in California's Medicaid program are extensively engaged in preventive and chronic care management programs.

  20. Quick screening tool for patients with severe negative emotional reactions to chronic illness: psychometric study of the negative emotions due to chronic illness screening test (NECIS).

    Science.gov (United States)

    Huang, Yun-Hsin; Wu, Chih-Hsun; Chen, Hsiu-Jung; Cheng, Yih-Ru; Hung, Fu-Chien; Leung, Kai-Kuan; Lue, Bee-Horng; Chen, Ching-Yu; Chiu, Tai-Yuan; Wu, Yin-Chang

    2018-01-16

    Severe negative emotional reactions to chronic illness are maladaptive to patients and they need to be addressed in a primary care setting. The psychometric properties of a quick screening tool-the Negative Emotions due to Chronic Illness Screening Test (NECIS)-for general emotional problems among patients with chronic illness being treated in a primary care setting was investigated. Three studies including 375 of patients with chronic illness were used to assess and analyze internal consistency, test-retest reliability, criterion-related validity, a cut-off point for distinguishing maladaptive emotions and clinical application validity of NECIS. Self-report questionnaires were used. Internal consistency (Cronbach's α) ranged from 0.78 to 0.82, and the test-retest reliability was 0.71 (P analysis reference, the receiver-operating characteristic curve analysis revealed an area under the curve of 0.81 and 0.82 (ps emotions, with a sensitivity and specificity of 83.3 and 69.0%, and 68.5 and 83.0%, respectively. The clinical application validity analysis revealed that low NECIS group showed significantly better adaptation to chronic illness on the scales of subjective health, general satisfaction with life, self-efficacy of self-care for disease, illness perception and stressors in everyday life. The NECIS has satisfactory psychometric properties for use in the primary care setting. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  1. Increased prevalence of chronic physical health disorders in Australians with diagnosed mental illness.

    Science.gov (United States)

    Scott, David; Burke, Karena; Williams, Susan; Happell, Brenda; Canoy, Doreen; Ronan, Kevin

    2012-10-01

    To compare chronic physical health disorder prevalence amongst Australian adults with and without mental illness. Total n=1,716 participants (58% female) with a mean age of 52 ± 13 years (range: 18 to 89 years) completed an online survey of Australian adults in 2010. Outcome measures including prevalence of chronic physical conditions and self-reported body mass index (BMI) in n=387 (23%) with a self-reported mental illness diagnosis were compared to respondents without mental illness. A significantly higher proportion of participants with mental illness were obese (BMI ≥ 30; 31 vs 24%, p=0.005). Adjusted odds ratios (OR) for coronary heart disease, diabetes, chronic bronchitis or emphysema, asthma, irritable bowel syndrome, and food allergies or intolerances (OR range: 1.54-3.19) demonstrated that chronic physical disorders were significantly more common in participants with a mental illness. Australian adults with a diagnosis for mental illness have a significantly increased likelihood of demonstrating chronic physical health disorders compared to persons without mental illness. Health professionals must be alert to the increased likelihood of comorbid chronic physical disorders in persons with a mental illness and should consider the adoption of holistic approaches when treating those with either a mental or physical illness. © 2012 The Authors. ANZJPH © 2012 Public Health Association of Australia.

  2. A role for homeostatic drive in the perpetuation of complex chronic illness: Gulf War Illness and chronic fatigue syndrome.

    Directory of Open Access Journals (Sweden)

    Travis J A Craddock

    Full Text Available A key component in the body's stress response, the hypothalamic-pituitary-adrenal (HPA axis orchestrates changes across a broad range of major biological systems. Its dysfunction has been associated with numerous chronic diseases including Gulf War Illness (GWI and chronic fatigue syndrome (CFS. Though tightly coupled with other components of endocrine and immune function, few models of HPA function account for these interactions. Here we extend conventional models of HPA function by including feed-forward and feedback interaction with sex hormone regulation and immune response. We use this multi-axis model to explore the role of homeostatic regulation in perpetuating chronic conditions, specifically GWI and CFS. An important obstacle in building these models across regulatory systems remains the scarcity of detailed human in vivo kinetic data as its collection can present significant health risks to subjects. We circumvented this using a discrete logic representation based solely on literature of physiological and biochemical connectivity to provide a qualitative description of system behavior. This connectivity model linked molecular variables across the HPA axis, hypothalamic-pituitary-gonadal (HPG axis in men and women, as well as a simple immune network. Inclusion of these interactions produced multiple alternate homeostatic states and sexually dimorphic responses. Experimental data for endocrine-immune markers measured in male GWI subjects showed the greatest alignment with predictions of a naturally occurring alternate steady state presenting with hypercortisolism, low testosterone and a shift towards a Th1 immune response. In female CFS subjects, expression of these markers aligned with an alternate homeostatic state displaying hypocortisolism, high estradiol, and a shift towards an anti-inflammatory Th2 activation. These results support a role for homeostatic drive in perpetuating dysfunctional cortisol levels through persistent

  3. Protective connections and educational attainment among young adults with childhood-onset chronic illness.

    Science.gov (United States)

    Maslow, Gary; Haydon, Abigail A; McRee, Annie-Laurie; Halpern, Carolyn T

    2012-08-01

    Youth with childhood-onset chronic illness (COCI) are at risk of poor educational attainment. Specific protective factors that promote college graduation in this population have not been studied previously. In this study, we examine the role protective factors during adolescence play in promoting college graduation among young adults with COCI. Data were collected from 10,925 participants in the National Longitudinal Study of Adolescent Health (Add Health). Protective factors present before 18 years of age included mentoring, parent relationship quality, school connectedness, and religious attendance. College graduation was the outcome of interest assessed when participants had a mean age of 28 years. Analysis was stratified by presence of COCI. About 2% of participants (N = 230) had 1 of 4 COCIs (cancer, diabetes, epilepsy, or heart disease). All 4 protective factors were associated with college graduation for youth without COCI. In the final multivariate model, only school connectedness was associated with college graduation for youth with COCI. School connectedness is of particular importance in promoting educational attainment for youth with COCI. © 2012, American School Health Association.

  4. Quality of Life and School Absenteeism in Children With Chronic Illness.

    Science.gov (United States)

    Emerson, Natacha D; Distelberg, Brian; Morrell, Holly E R; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne

    2016-08-01

    Children and adolescents with a chronic illness (CI) tend to demonstrate diminished physical and social functioning, which contribute to school attendance issues. We investigated the role of social and physical functioning in reducing school absenteeism in children participating in Mastering Each New Direction (MEND), a family-based psychosocial intervention for youths with CI. Forty-eight children and adolescents with a CI (70.8% female, M age = 14.922, SD = 2.143) and their parent(s) completed a health-related quality of life (HRQOL) measure pre- and postintervention. Using multiple mediation, we examined whether parent- and child-rated physical and social HRQOL mediated the relationship between school attendance before and after MEND. Once the mediational model was not supported, we investigated whether HRQOL moderated the relationship between missed school days pre- and postintervention. Neither physical nor social functioning mediated or moderated the relationship between missed school days pre- and postintervention. Instead, higher parent-rated physical functioning directly predicted decreased number of missed school days, while lower parent-rated social and child-rated physical functioning predicted increased missed school days. Parent-perceived HRQOL may have a direct effect on health-related behaviors such as school attendance. Future research should determine whether gains in parent-rated QOL are maintained in the long term and whether these continue to impact markers of functional well-being. © The Author(s) 2015.

  5. 'Sometimes it feels as if the world goes on without me': adolescents' experiences of living with chronic fatigue syndrome.

    Science.gov (United States)

    Winger, Anette; Ekstedt, Mirjam; Wyller, Vegard B; Helseth, Sølvi

    2014-09-01

    To explore the experience of being an adolescent with chronic fatigue syndrome. Despite ample research, chronic fatigue syndrome is still poorly understood, and there are still controversies related to the illness. Adolescents with chronic fatigue syndrome are often unable to attend school and lose social relations with friends. The challenges they face will affect their quality of life. A qualitative, phenomenological hermeneutical design. Six boys and twelve girls, aged 12-18, were interviewed, emphasising their own experiences living with chronic fatigue syndrome. Analyses were performed using a phenomenological hermeneutical method. The core theme, 'Sometimes it feels as if the world goes on without me', encompasses the feelings an adolescent living with chronic fatigue syndrome might have about life. The core theme was supported by four subthemes: 'On the side of life--locked in and shut out'; 'the body, the illness and me'; 'if the illness is not visible to others, does it exist?'; and 'handling life while hoping for a better future'. The subthemes reflect the experience of social isolation, their own and others' understanding of the illness and hope for the future. Not being able to be with friends, or attend school, made the adolescents feel different and forgotten. They felt alienated in their own bodies and were struggling to be visible to themselves and to their surroundings. Spending less time with friends and more time with their parents constituted a threat to independence and development. Yet they managed to envision a better future despite all the difficulties. To provide effective support and constructive relations to adolescents with chronic fatigue syndrome, all health professions involved need insight from the persons who are themselves ill. Health centres could function as resource centres for patients and healthcare professionals. © 2013 John Wiley & Sons Ltd.

  6. Practice Parameter for the Psychiatric Assessment and Management of Physically Ill Children and Adolescents

    Science.gov (United States)

    Journal of the American Academy of Child & Adolescent Psychiatry, 2009

    2009-01-01

    An introduction for any medical health clinician on the knowledge and skills that are needed for the psychiatric assessment and management of physically ill children and adolescents is presented. These parameters are presented to assist clinicians in psychiatric decision making.

  7. Parent Preferences for Shared Decision-making in Acute Versus Chronic Illness.

    Science.gov (United States)

    Tom, Dina M; Aquino, Christian; Arredondo, Anthony R; Foster, Byron A

    2017-10-01

    The goal of this study was to examine preferences for shared decision-making (SDM) in parents of acutely ill versus chronically ill children in the inpatient setting. Additionally, we explored the effect of parental perception of illness severity and uncertainty in illness on decision-making preference. In this cross-sectional study, we surveyed parents of children admitted to pediatric inpatient units at an academic, tertiary-care hospital. Surveys were administered in person and used validated tools to assess SDM preferences and uncertainty in illness. Descriptive statistics evaluated associations stratified by acute versus chronic illness, and multivariable analyses were performed. Of the 200 parents who participated, the majority were women (78%), Hispanic (81.5%), English speaking (73%), between 30 and 39 years old (37.5%), and had an education achievement of less than a college degree (77%). The mean age of hospitalized children was 8.1 years, and half reported a chronic illness. Most parents preferred an active (43%) or collaborative (40%) role in SDM. There was no association with SDM preference by demographics, number of previous hospitalizations, perception of illness severity, or uncertainty. However, parents of chronically ill children significantly preferred a passive role in SDM when they perceived a high level of uncertainty in illness. Most parents of hospitalized children prefer to take an active or collaborative role in SDM. However, parents of chronically ill children who perceive high levels of uncertainty surrounding their children's illness prefer a passive role, thus illustrating the complexity in decision-making among this parent population. Copyright © 2017 by the American Academy of Pediatrics.

  8. Women's self-management of chronic illnesses in the context of caregiving: a grounded theory study.

    Science.gov (United States)

    Martinez-Marcos, Mercedes; De la Cuesta-Benjumea, Carmen

    2015-06-01

    Uncover how women self-manage their own chronic illness while taking care of a dependent relative. International policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Self-management is a crucial part of this care. Caregivers are more prone to have chronic illness than non-caregivers. They are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their families. Caregivers articulate strategies to enable them to focus their energy on caring. Qualitative study using constructivist grounded theory. Thirty-nine women caregivers with a chronic illness participated in the study. Twenty-three semi-structured interviews and two focus groups were carried out between April 2010-December 2011. Data were analysed using grounded theory procedures. Self-management helps women caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Women caregivers integrate effectively and creatively the management of their chronic illnesses within the complexities of family care. This renders their health needs invisible and reaffirms them as capable caregivers. Identifying self-management strategies of women caregivers allow health professionals to acknowledge and reinforce effective self-care measures and to deter those that are ineffective and lessen their quality of life. © 2014 John Wiley & Sons Ltd.

  9. Blood Biomarkers of Chronic Inflammation in Gulf War Illness.

    Directory of Open Access Journals (Sweden)

    Gerhard J Johnson

    Full Text Available More than twenty years following the end of the 1990-1991 Gulf War it is estimated that approximately 300,000 veterans of this conflict suffer from an unexplained chronic, multi-system disorder known as Gulf War Illness (GWI. The etiology of GWI may be exposure to chemical toxins, but it remains only partially defined, and its case definition is based only on symptoms. Objective criteria for the diagnosis of GWI are urgently needed for diagnosis and therapeutic research.This study was designed to determine if blood biomarkers could provide objective criteria to assist diagnosis of GWI.A surveillance study of 85 Gulf War Veteran volunteers identified from the Department of Veterans Affairs Minnesota Gulf War registry was performed. All subjects were deployed to the Gulf War. Fifty seven subjects had GWI defined by CDC criteria, and 28 did not have symptomatic criteria for a diagnosis of GWI. Statistical analyses were performed on peripheral blood counts and assays of 61 plasma proteins using the Mann-Whitney rank sum test to compare biomarker distributions and stepwise logistic regression to formulate a diagnostic model.Lymphocyte, monocyte, neutrophil, and platelet counts were higher in GWI subjects. Six serum proteins associated with inflammation were significantly different in GWI subjects. A diagnostic model of three biomarkers-lymphocytes, monocytes, and C reactive protein-had a predicted probability of 90% (CI 76-90% for diagnosing GWI when the probability of having GWI was above 70%.The results of the current study indicate that inflammation is a component of the pathobiology of GWI. Analysis of the data resulted in a model utilizing three readily measurable biomarkers that appears to significantly augment the symptom-based case definition of GWI. These new observations are highly relevant to the diagnosis of GWI, and to therapeutic trials.

  10. [Chronic tinnitus in children and adolescents].

    Science.gov (United States)

    Rosanowski, F; Hoppe, U; Pröschel, U; Eysholdt, U

    1997-11-01

    The problem of tinnitus in adults is reviewed systematically in nearly all standard otolaryngology reference works, whereas textbooks and monographs that focus on pediatric otorhinolaryngology or audiology and hearing in children and adolescents provide only little information concerning the epidemiology, etiology and therapy of tinnitus. The purpose of this study was to evaluate the psychosomatic aspects of chronic tinnitus in this younger age group. A rational diagnostic approach is discussed as to which diagnostic measures are necessary in the pediatric group for deciding which therapeutic option to chose. The therapeutic outcome of tinnitus counselling in non-severe cases and of parenteral lidocaine infusions in cases of a troublesome tinnitus is presented. From January 1992 to December 1995, 31 children and adolescents in the age range from 6 to 17 years were treated for a chronic tinnitus without a measurable hearing loss. In 20 cases the tinnitus was bilateral; in 11 cases it was unilateral, without side preference. In 24 patients the case history gave no hint of a major annoyance by the tinnitus or significant psychological components. In these cases tinnitus counselling was carried out. In 7 cases-3 girls and 4 boys in the age range from 10 to 17 years-the kind and grade of symptom satisfied the ICD-10 criteria of a depressive episode. These patients were hospitalized for 10 days and a lidocaine infusion therapy (2 mg/kg Xylocain Cor in 500 ml HAES 6%) was performed as treatment for the somatic component of the disorder. Data were analyzed catamnestically using the patients' files. In all cases normal hearing threshold and speech intelligibility were ascertained by pure-tone and speech audiometry. Auditory evoked brainstem potentials gave no further information. The measurement of transient evoked otoacoustic emissions gave no consistent results in either of the two groups. Tinnitus measurement and audiometric masking could only be carried out in patients

  11. Do illness perceptions of people with chronic low back pain differ from people without chronic low back pain?

    NARCIS (Netherlands)

    van Wilgen, C. Paul; van Ittersum, Miriam W.; Kaptein, Ad A.

    Objectives To determine why some people develop chronic low back pain, and whether illness perceptions are an important risk factor in the transition from acute to chronic low back pain. Design Cross-sectional study. Participants Four hundred and two members of the general Dutch population, with and

  12. Association between psychosomatic health symptoms and common mental illness in Ghanaian adolescents: Age and gender as potential moderators.

    Science.gov (United States)

    Glozah, Franklin N; Pevalin, David J

    2017-09-01

    Little is known about the role of age and gender in the association between psychosomatic symptoms and common mental illness in Ghanaian adolescents. This cross-sectional study examined age and gender as moderators between psychosomatic symptoms and common mental illness using data from a school-based survey ( N = 770). Males reported higher psychosomatic symptoms and common mental illness, while younger adolescents reported higher common mental illness only. Psychosomatic symptoms were positively associated with common mental illness, but age and gender did not moderate this association. Interventions aimed at reducing the prevalence rate in psychosomatic symptoms are crucial in decreasing common mental illness in Ghanaian adolescents.

  13. Hospital-based school for children with chronic illness in Taiwan

    Directory of Open Access Journals (Sweden)

    Der-Fang Chen

    2015-10-01

    Conclusion: The educational needs of children with chronic illness can be easily neglected even in an industrialized country. The establishment of policy and the enrichment of professional education on advocacy are necessary to eliminate educational inequities and benefit sick children.

  14. Pre-travel care for immunocompromised and chronically ill travellers: A retrospective study

    NARCIS (Netherlands)

    van Aalst, Mariëlle; Verhoeven, Roos; Omar, Freshta; Stijnis, Cornelis; van Vugt, Michèle; de Bree, Godelieve J.; Goorhuis, Abraham; Grobusch, Martin P.

    2017-01-01

    Background: Immunocompromised and chronically ill travellers (ICCITs) are susceptible to travel related diseases. In ICCITs, pre-travel care regarding vaccinations and prophylactics is complex. We evaluated the protection level by preventive measures in ICCITs by analysing rates of vaccination

  15. Psychosocial adjustment of children with chronic illness: an evaluation of three models.

    Science.gov (United States)

    Gartstein, M A; Short, A D; Vannatta, K; Noll, R B

    1999-06-01

    This study was designed to assess social, emotional, and behavioral functioning of children with chronic illness and to evaluate three models addressing the impact of chronic illness on psychosocial functioning: discrete disease, noncategorical, and mixed. Families of children with cancer, sickle cell disease, hemophilia, and juvenile rheumatoid arthritis participated, along with families of classroom comparison peers without a chronic illness who had the closest date of birth and were of the same race and gender (COMPs). Mothers, fathers, and children provided information regarding current functioning of the child with chronic illness or the COMP child. Child Behavior Checklist and Children's Depression Inventory scores were examined. Results provided support for the noncategorical model. Thus, the mixed model evaluated in this study requires modifications before its effectiveness as a classification system can be demonstrated.

  16. Promoting Healthy Work for Employees with Chronic Illness : Analysis of Models of Good Practice

    NARCIS (Netherlands)

    Kristin ten Have; Anja Dijkman; Dr. Rob Gründemann; Cees Wevers

    2012-01-01

    The ENWHP project and campaign Promoting Healthy Work for Employees with Chronic Illness (PH Work) should contribute towards the implementation of effective workplace health practices within corporate policies of enterprises in Europe. More specific the project should stimulate activities and

  17. Say 'trouble's gone': chronic illness and employability in job training programmes.

    Science.gov (United States)

    Tsui, Emma K

    2013-01-01

    The concept of biographical disruption has unique relevance for socioeconomically disadvantaged groups who participate in entry-level job training programmes. In these programmes trainees often suffer from various forms of chronic illness and must arrange these illnesses into a picture of employability. In this article I use ethnographic data and narrative analysis to examine closely two trainees' illness-related experiences, expressions and talk, and find that their ability to present their illnesses in ways that are consistent with programmatic goals is strongly influenced by family support, responsibilities and roles, as well as particular aspects of illness, like the interpretability of symptoms. I also find that the concept of biographical disruption has a curious traction in the world of job training, particularly among job training programme staff who would like to see trainees mobilise a variety of resources to help manage their illness. However, for trainees, many of whom have lived with chronic illness for years, the concept of biographical disruption may be more limited as a tool for understanding the experiences of illness. A more meaningful disruptive force in the lives of trainees appears to be the programme itself and the strategies for dealing with illness that programme staff may extend. © 2012 The Author. Sociology of Health & Illness © 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

  18. Puberty development among children and adolescents with chronic disease in Saudi Arabia.

    Science.gov (United States)

    AlBuhairan, Fadia; Tamimi, Waleed; Tamim, Hani; Al Mutair, Angham; Felimban, Naila; Altwaijri, Yasmin; Shoukri, Mohamed; Al Alwan, Ibrahim

    2012-01-01

    Increasing numbers of children with chronic health conditions are now surviving into adolescence and adulthood because of advancing health care. These chronic health conditions are generally known to impact a child's growth and development, including pubertal development. In Saudi Arabia, chronic diseases are prevalent, yet no reports of pubertal onset and its relation to chronic illness are available. The aim of this study was to explore pubertal development among Saudi children and adolescents with a chronic illness. Cross-sectional study conducted at schools in Riyadh, Saudi Arabia in 2006. Those students whose parents reported that their son/daughter had a chronic illness and/or was taking a long-term medication underwent a physical examination to determine sexual maturity rating and growth parameters. Of 1371 students who participated in the study, 155 (11.3%) had a chronic illness. Of those, 79 (51%) were male, and the mean SD age of all the students was 11.4 (2.4) years. Ninety (58%) students were taking medication for their health condition. Bronchial asthma was reported to be the most common chronic condition (n=66; 42.6%), followed by blood disorders (n=41; 26.5%). Fifty-three (34%) students were overweight or obese. For male gonadal (G) development, the mean age of boys with G stage 2 was 11.7 years; stage 3: 13.5 years; stage 4: 14.1 years; and stage 5: 14.6 years. For female breast (B) development, the mean age of girls with B stage 2 was 10.7 years; stage 3: 11.3 years; stage 4: 12.4 years; and stage 5: 14.1 years. The pubic hair development for both boys and girls was similar to the corresponding gonadal or breast development, respectively. The age of onset of pubertal development for both boys and girls with a chronic illness are within normal limits. The high prevalence of overweight and obesity may contribute to this phenomenon, yet further studies should consider the effects of disease severity and chronicity and medication use as possible

  19. Perceptions of chronically ill and healthy consumers about electronic personal health records: a comparative empirical investigation

    OpenAIRE

    Cocosila, Mihail; Archer, Norm

    2014-01-01

    Objective To develop a model of consumer perceptions of electronic personal health records (PHRs) and validate it in a comparative study between consumers who report having a chronic illness and those who report being well. Materials and methods A model of PHR use motivators and barriers was built and tested through a national survey across Canada. Data were collected from 800 individuals, 18 years or older. Half reported having a chronic illness or disability and half reported being well. An...

  20. Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases

    Science.gov (United States)

    Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris

    2016-01-01

    Introduction: This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies used by patients, and some health information behaviour practices may be associated with better coping and more positive perception of…

  1. Cognitive Treatment of Illness Perceptions in Patients With Chronic Low Back Pain : A Randomized Controlled Trial

    NARCIS (Netherlands)

    Siemonsma, Petra C.; Stuive, Ilse; Roorda, Leo D.; Vollebregt, Joke A.; Walker, Marion F.; Lankhorst, Gustaaf J.; Lettinga, Ant T.

    Background. Illness perceptions have been shown to predict patient activities. Therefore, studies of the effectiveness of a targeted illness-perception intervention on chronic nonspecific low back pain (CLBP) are needed. Objective. The purpose of this study was to compare the effectiveness of

  2. Aspects of protein metabolism in children in acute and chronic illness

    NARCIS (Netherlands)

    Geukers, V.G.M.

    2014-01-01

    In critically ill children, a negative protein balance is associated with an increased incidence of infections, fewer ventilator-free days, and increased length of stay in the pediatric intensive care unit. Additionally, a malnourished state due to chronic illness increases the risk of respiratory

  3. A Therapeutic Approach for Treating Chronic Illness and Disability among College Students

    Science.gov (United States)

    Haemmelmann, Katie L.; McClain, Mary-Catherine

    2013-01-01

    Research in chronic illness and disability (CID) in college students has demonstrated that students with disabilities encounter more difficulties psychosocially than their nondisabled counterparts. Subsequently, these difficulties impact the ability of these students to successfully adapt. Using the illness intrusiveness model in combination with…

  4. Paradigms for investigating rehabilitation and adaptation to childhood disability and chronic illness.

    Science.gov (United States)

    Harper, D C

    1991-10-01

    Significant research perspectives in investigating chronic illness and disability are presented. Historical research conceptualizations in childhood disability are reviewed and newer contexts for evaluating disorder are presented. Future research in childhood illness and disability is directed toward basing investigations on theoretical models and promoting prospective longitudinal programs. Pediatric psychologists are encouraged to consider more collaborative efforts to move the field forward systematically.

  5. Dissimilary in patients' and spouses' representations of chronic illness: exploration of relations to patient adaptation.

    NARCIS (Netherlands)

    Heijmans, M.; Ridder, D. de; Bensing, J.

    1999-01-01

    In this cross-sectional study, the illness representations of patients suffering from Chronic Fatigue Syndrome (n=49) and Addison's Disease (n=52) and those of their spouses were compared. Couples generally held similar views with regard to the dimensions of illness identity and cause but disagreed

  6. The characteristics of family functioning with mentally ill children and adolescents

    OpenAIRE

    Jelkić Milica; Mandić-Gajić Gordana; Stojanović Zvezdana; Đokić Milan; Eror Aleksandar; Kolundžija Ksenija

    2018-01-01

    Background/Aim. The family functioning and characteristics are the major risk factors in the genesis and persistence of mental disorders in children. The aim of this study was to evaluate the characteristics of functioning of family with mentally ill children and adolescents. Methods. This study explored 47 families with a child/adolescent suffering from mental disorders and 47 families of age matched healthy children/adolescents. The socio-demographic questionnaire, Social Adaptation Self-ev...

  7. Experiences of case management with chronic illnesses: a qualitative systematic review.

    Science.gov (United States)

    Joo, J Y; Liu, M F

    2018-03-01

    This qualitative systematic review aimed to identify and synthesize recent qualitative studies to improve understanding of the experiences and perceptions of case management interventions that individuals with chronic illnesses and their caregivers have. Case management has been shown to be effective at improving quality of care and lowering costs for individuals with chronic illnesses. However, no qualitative review has been synthesized with recent qualitative studies about case management experiences by individual with chronic illnesses. This qualitative systematic review uses a thematic synthesis method to review 10 qualitative studies published within the last 10 years, from 2007 to 2016, thereby identifying and discussing the understandings that individuals with chronic illnesses and their caregivers have about case management. From this synthesis, three themes were identified as facilitators of case management (access to healthcare resources, health status supports and emotional aid) and two themes were identified as barriers to it (low information about case management and time constraints). This is the first qualitative systematic review of the perceptions and experiences that individuals with chronic illnesses and their caregivers have about case management. The facilitators of case management can be employed to inform patients about the benefits of case management and to improve population health. The findings about barriers to case management can be used to reform case management for populations with chronic illnesses. These factors should be considered by nursing researchers and healthcare policymakers when implementing case management. © 2018 International Council of Nurses.

  8. [Mental illnesses in childhood and adolescence: A bioethical view of the stigma they entail].

    Science.gov (United States)

    Bella, Mónica E; Vilarrodona, Hugo

    2015-01-01

    Literature suggests that general beliefs towards mental illnesses are strongly correlated to the social behavior towards people who suffer them. to explore beliefs and attitudes towards mental illnesses in children and adolescents and associate them to bioethics. exploratory, prospective and quantitative study. A questionnaire was administered to parents-tutors of children-adolescents with mental disorders, and to healthcare professionals of the Hospital de Niños de la Santísima Trinidad Córdoba (Argentina). Data processing was performed by means of frequency analysis. 68.5% of parents-tutors and 51.8% of healthcare professionals answered that mental illnesses are never considered like any other illness. Diagnose and treatment is perceived as a stigma by 25.9% of healthcare professionals. For 88.1% of parents-tutors and 9.8% of healthcare professionals, children and adolescents with mental illnesses are never dangerous. 77.1% of parents and 18.4% of professionals stated that people are never afraid of children-adolescents with MI. 42.8% of children-adolescents were excluded from school and 28.5% from family activities. mental illness during childhood entails a stigma that compromises development, equal opportunity and human rights.

  9. Complete mental health in adult siblings of those with a chronic illness or disability.

    Science.gov (United States)

    Hallion, Madeleine; Taylor, Amanda; Roberts, Rachel

    2018-02-01

    Sibling relationships have lifelong significance and childhood chronic illness and disability can have considerable impacts on healthy siblings, influencing development into adulthood. Research has not yet assessed well-being in this population using measures of both mental health and mental illness. Thus, this study assessed well-being in a comprehensive manner using the complete mental health (CMH) model. Participants (N = 144) included both adult siblings of those with chronic illness or disability and adults with healthy siblings. Measures of positive social, psychological and emotional well-being were used to assess mental health and a measure of depression, anxiety, and stress was used to assess mental illness. A high proportion of participants, both with and without siblings with a chronic illness or disability, were experiencing symptoms of mental illness, accompanied by high wellbeing. This indicates that many participants fit into the struggling category of the CMH model. The present research highlights the need for early intervention services to ensure that siblings of those with a chronic illness or disability are well supported in developing strengths, as well as managing difficulties. Results also indicate that targeting students in mental health promotion is important to encourage participation in services. Implications for rehabilitation Siblings of those with a chronic illness or disability need to be included in assessments in order to understand the experience of the family unit. It is important for families and clinicians to be aware of the needs of healthy siblings and encourage them to interact with support services in order to maximise and maintain well-being. Skills-based support could be beneficial, particularly for providing caregivers with strategies to meet the needs of both their child with a chronic illness or disability and their healthy children.

  10. Chronic physical conditions in older adults with mental illness and/ or substance use disorders.

    Science.gov (United States)

    Lin, Wen-Chieh; Zhang, Jianying; Leung, Gary Y; Clark, Robin E

    2011-10-01

    To examine the association between mental illness and chronic physical conditions in older adults and investigate whether co-occurring substance use disorders (SUDs) are associated with greater risk of chronic physical conditions beyond mental illness alone. A retrospective cross-sectional study. Medicare and Medicaid programs in Massachusetts. Massachusetts Medicare and Medicaid members aged 65 and older as of January 1, 2005 (N = 679,182). Diagnoses recorded on Medicare and Medicaid claims were used to identify mental illness, SUDs, and 15 selected chronic physical conditions. Community-dwelling older adults with mental illness or SUDs had higher adjusted risk for 14 of the 15 selected chronic physical conditions than those without these disorders; the only exception was eye diseases. Moreover, those with co-occurring SUDs and mental illness had the highest adjusted risk for 11 of these chronic conditions. For residents of long-term care facilities, mental illness and SUDs were only moderately associated with the risk of chronic physical conditions. Community-dwelling older adults with mental illness or SUDs, particularly when they co-occurred, had substantially greater medical comorbidity than those without these disorders. For residents of long-term care facilities, the generally uniformly high medical comorbidity may have moderated this relationship, although their high prevalence of mental illness and SUDs signified greater healthcare needs. These findings strongly suggest the imminent need for integrating general medical care, mental health services, and addiction health services for older adults with mental illness or SUDs. © 2011, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.

  11. How optimism contributes to the adaptation of chronic illness. A prospective study into the enduring effects of optimism on adaptation moderated by the controllability of chronic illness

    NARCIS (Netherlands)

    Fournier, M.; Ridder, D.T.D. de; Bensing, J.

    2002-01-01

    The aim of this study was to investigate the impact of optimistic beliefs on coping and adaptation over 6 and 12 months of chronic illness, and whether the adaptiveness of optimistic beliefs was moderated by the controllability of disease. In addition, we examined whether coping strategies

  12. A review of factors associated with mental health in siblings of children with chronic illness.

    Science.gov (United States)

    Incledon, Emily; Williams, Lauren; Hazell, Trevor; Heard, Todd R; Flowers, Alexandra; Hiscock, Harriet

    2015-06-01

    This article reviews the literature on modifiable factors associated with mental health in siblings of children with chronic illness. Three clinical databases were searched. A total of 17 studies met the inclusion criteria. Several key themes emerged from the review. Better sibling mental health was associated with camp attendance, perceived parent/peer support, illness education and enhancing control through cognitive coping strategies and routine. Parental and sibling psychoeducation interventions and social support may enhance children's mental health when their sibling has a chronic illness. © The Author(s) 2013.

  13. Families of Children with Chronic Illness and the Relational Family Model

    Directory of Open Access Journals (Sweden)

    Tanja Pate

    2016-09-01

    Full Text Available Families of children with chronic illness experience persistent stress. Facing the diagnosis and learning how to cope with it is a stressful experience not only for the child but also for the parents and for the whole family. The illness, with its unpredictability and treatment, disturbs their daily routine and threatens the whole family system. Parental involvement in the child’s disease management and their emotional support are crucial for effective coping and adaptation to the child’s chronic illness. The aim of this article is to present the importance of the parental role in these families through theoretical findings of the relational family model.

  14. Parent-adolescent relationship in youths with a chronic condition.

    Science.gov (United States)

    Christin, A; Akre, C; Berchtold, A; Suris, J C

    2016-01-01

    Suffering from a chronic disease or disability (CDD) during adolescence can be a burden for both the adolescents and their parents. The aim of the present study is to assess how living with a CDD during adolescence, the quality of parent-adolescent relationship (PAR) and the adolescent's psychosocial development interact with each other. Using the Swiss Multicenter Adolescent Survey on Health 2002 (SMASH02) database, we compared adolescents aged 16-20 years with a CDD (n = 760) with their healthy peers (n = 6493) on sociodemographics, adolescents' general and psychosocial health, interparental relationship and PAR. Bivariate analyses showed that adolescents with a CDD had a poorer psychosocial health and a more difficult relationship with their parents. The log-linear model indirectly linked CDD and poor PAR through four variables: two of the adolescents' psychosocial health variables (suicide attempt and sensation seeking), the need for help regarding difficulties with parents and a highly educated mother that acted as a protective factor, allowing for a better parent-adolescent with a CDD relationship. It is essential for health professionals taking care of adolescents with a CDD to distinguish between issues in relation with the CDD from other psychosocial difficulties, in order to help these adolescents and their parents deal with them appropriately and thus maintain a healthy PAR. © 2015 John Wiley & Sons Ltd.

  15. Depressive Symptomatology in Children and Adolescents with Chronic Renal Insufficiency Undergoing Chronic Dialysis

    Directory of Open Access Journals (Sweden)

    Edith G. Hernandez

    2011-01-01

    Full Text Available This paper presents a descriptive study, using the Birleson Scale to determine the frequency of depressive symptomatology in children and adolescents with chronic renal insufficiency (CRI undergoing hemodialysis (HD and chronic peritoneal dialysis (CPD. There were 67 patients (40 female and 27 male with a mean age of 14.76±2.71 years, duration of illness ≥3 months, 43 (64.18% patients with CPD and 24 (35.82% undergoing HD. The frequency of high occurrence, low occurrence, and absence of depressive symptomatology was 10.45% (=7, 43.28% (=29, and 46.27% (=31, respectively; all of the seven (100% patients with high occurrence of depressive symptomatology were female (=0.04, and none of these (0% had a friend to confide in (=0.03. Depressive symptomatology in patients with CPD was associated with a lower weekly / compared to those without depressive symptomatology (2.15±0.68 versus 2.52±0.65; =0.01. There was no association with patient age, caregiver, time and dialysis type, anemia, bone disease, nutritional or financial status, origin, schooling, or employment.

  16. Association between nutritional status and subjective health status in chronically ill children attending special schools.

    Science.gov (United States)

    Joosten, Koen; van der Velde, Kelly; Joosten, Pieter; Rutten, Hans; Hulst, Jessie; Dulfer, Karolijn

    2016-04-01

    In hospitalized children with a chronic disease, malnutrition was associated with a lower subjective health status. In outpatient children with a chronic disease attending special schools, this association has never been studied. The aim of this study was to assess the association between nutritional status and subjective health status in chronically ill children attending special schools. Overall, 642 children, median age 9.8 years (IQR 7.7-11.5), 60 % male, 72 % Caucasian, were included in this prospective study in nine special schools for chronically ill children in the Netherlands. Overall malnutrition was assessed as: acute malnutrition (nutritional risk-screening tool STRONGkids. Subjective health status was assessed with EQ-5D. Overall, 16 % of the children had overall malnutrition: 3 % acute and 13 % chronic malnutrition. Nurses reported 'some/severe problems' on the health status dimensions mobility (15 %), self-care (17 %), usual activities (19 %), pain/discomfort (22 %), and anxiety/depression (22 %) in chronically ill children. Their mean visual analogue scale score (VAS) was 73.0 (SD 11.1). Malnutrition, medication usage, and younger age explained 38 % of the variance of the VAS score. The presence of overall malnutrition in chronically ill children attending special schools was associated with lower subjective health status, especially in younger children and in those with chronic medication usage. Therefore, it is important to develop and use profile-screening tools to identify these children.

  17. The stress of being chronically ill: from disease-specific to task-specific aspects.

    NARCIS (Netherlands)

    Heijmans, M.; Rijken, M.; Foets, M.; Ridder, D. de; Schreurs, K.; Bensing, J.

    2004-01-01

    The assumption that disease-related stressors are exclusive for particular diagnoses characterizes many studies of chronically ill patients. In this study the perceptions of 1305 patients from 10 different chronic disease categories were compared with respect to a number of important stressors.

  18. The stress of being chronically ill: from disease-specific to task-specific aspects

    NARCIS (Netherlands)

    Heijmans, M.; Rijken, M.; Foets, M.; Ridder, D.T.D. de; Schreurs, K.; Bensing, J.

    The assumption that disease-related stressors are exclusive for particular diagnoses characterizes many studies of chronically ill patients. In this study the perceptions of 1305 patients from 10 different chronic disease categories were compared with respect to a number of important stressors.

  19. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

    NARCIS (Netherlands)

    Haafkens, J.A.; Kopnina, H.; Meerman, M.G.M.; van Dijk, F.J.H.

    2011-01-01

    Background: Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the

  20. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

    NARCIS (Netherlands)

    Haafkens, Joke A.; Kopnina, Helen; Meerman, Martha G. M.; van Dijk, Frank J. H.

    2011-01-01

    Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by

  1. Theory of planned behavior and adherence in chronic illness: a meta-analysis

    NARCIS (Netherlands)

    Rich, A.; Brandes, K.; Mullan, B.; Hagger, M.S.

    2015-01-01

    Social-cognitive models such as the theory of planned behavior have demonstrated efficacy in predicting behavior, but few studies have examined the theory as a predictor of treatment adherence in chronic illness. We tested the efficacy of the theory for predicting adherence to treatment in chronic

  2. Chronic Illness as a Source of Happiness: Paradox or perfectly normal?

    Directory of Open Access Journals (Sweden)

    S. Hoppe

    2013-11-01

    Full Text Available In this paper I analyse the relation between happiness and chronic illness from the perspective of medical anthropology and disability studies. By looking at the disability paradox I deconstruct society’s view of people with a disability. I argue that the disability paradox is problematic as it ignores the views of people with a disability. Moreover, such a paradox reinforces the idea that living with a chronic illness or disability is a devastating experience and that happiness and disability are mutally exclusive realities. Based on empiric examples of people who suffer from Multiple Sclerosis I demonstrate that people with a chronic illness can experience happiness in spite of illness, but also as a consequence of it. 

  3. Parenting stress among caregivers of children with chronic illness: a systematic review.

    Science.gov (United States)

    Cousino, Melissa K; Hazen, Rebecca A

    2013-09-01

    To critically review, analyze, and synthesize the literature on parenting stress among caregivers of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96 studies was conducted. Results Caregivers of children with chronic illness reported significantly greater general parenting stress than caregivers of healthy children (d = .40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was associated with greater parental responsibility for treatment management and was unrelated to illness duration and severity across illness populations. Greater parenting stress was associated with poorer psychological adjustment in caregivers and children with chronic illness. Conclusion Parenting stress is an important target for future intervention. General and illness-specific measures of parenting stress should be used in future studies.

  4. [Mental health of children, adolescents and young adults--part 1: prevalence, illness persistence, adversities, service use, treatment delay and consequences].

    Science.gov (United States)

    Lambert, M; Bock, T; Naber, D; Löwe, B; Schulte-Markwort, M; Schäfer, I; Gumz, A; Degkwitz, P; Schulte, B; König, H H; Konnopka, A; Bauer, M; Bechdolf, A; Correll, C; Juckel, G; Klosterkötter, J; Leopold, K; Pfennig, A; Karow, A

    2013-11-01

    Numerous birth-control studies, epidemiological studies, and observational studies have investigated mental health and health care in childhood, adolescence and early adulthood, including prevalence, age at onset, adversities, illness persistence, service use, treatment delay and course of illness. Moreover, the impact of the burden of illness, of deficits of present health care systems, and the efficacy and effectiveness of early intervention services on mental health were evaluated. According to these data, most mental disorders start during childhood, adolescence and early adulthood. Many children, adolescents and young adults are exposed to single or multiple adversities, which increase the risk for (early) manifestations of mental diseases as well as for their chronicity. Early-onset mental disorders often persist into adulthood. Service use by children, adolescents and young adults is low, even lower than for adult patients. Moreover, there is often a long delay between onset of illness and first adequate treatment with a variety of linked consequences for a poorer psychosocial prognosis. This leads to a large burden of illness with respect to disability and costs. As a consequence several countries have implemented so-called "early intervention services" at the interface of child and adolescent and adult psychiatry. Emerging studies show that these health-care structures are effective and efficient. Part 1 of the present review summarises the current state of mental health in childhood, adolescence and early adulthood, including prevalence, age at onset, adversities, illness persistence, service use, and treatment delay with consequences. © Georg Thieme Verlag KG Stuttgart · New York.

  5. A meta-ethnographic synthesis on phenomenographic studies of patients’ experiences of chronic illness

    Directory of Open Access Journals (Sweden)

    Marta Röing

    2015-02-01

    Full Text Available Phenomenography is a qualitative research approach developed within an educational framework, focusing on the qualitative experience of learning. It is also being used, to a lesser degree, in healthcare research. In the present study, we conducted a meta-ethnographic synthesis of phenomenographic studies on chronic illness, in order to give a broader perspective of how chronic illness can be experienced. Our aim was not to describe patients’ various individual experiences of illness, but instead to identify the different ways chronic illness can be experienced by patients. Our synthesis and phenomenographic interpretation of 12 selected articles found that patients’ experiences of chronic illness can be described in terms of a different lived body, a struggle with threat to identity and self-esteem, a diminished lifeworld, and a challenging reality. These experiences relate to each other in a process of recurring loops, where the different ways of experiencing continue to influence each other over time. According to these findings, the use of phenomenography as a research approach has the potential to add to the understanding of how chronic illness can be experienced. Patients may benefit from seeing that their illness can be experienced in many different ways and that it has many aspects, which then can lead to a better understanding and coping with their illness. We suggest that it may be worthwhile to expand the scope of phenomenography outside pedagogics. This presupposes a revision of the application to include a wider and more comprehensive description, for instance, of the different ways illness and healthcare phenomena can be experienced, and how these different ways are related to each other, with less focus on hierarchical relations.

  6. A center for self-management of chronic illnesses in diverse groups.

    Science.gov (United States)

    Inouye, Jillian; Boland, Mary G; Nigg, Claudio R; Sullivan, Kathleen; Leake, Anne; Mark, Debra; Albright, Cheryl L

    2011-01-01

    Prevention and successful treatment of chronic disease require a scientific understanding of the impacts and interactions of ethnicity, culture, and illness on self-management interventions. This article presents one approach to developing effective methods to address the needs of ethnic minorities living with chronic illnesses. Described is the University of Hawaii Center for Ohana Self-Management of Chronic Illnesses (COSMCI) located in the School of Nursing & Dental Hygiene and funded by the National Institute of Nursing Research (Award Number P20NR010671). The interdisciplinary center focuses on family and community self-management interventions in ethnically diverse populations with chronic illnesses. Areas discussed are: 1) the operational structure for creating an environment conducive to interdisciplinary ohana self-management chronic illness research in ethnically diverse populations; and 2) the development of sustainable interdisciplinary, biobehavioral research capacity. The COSMCI uses a social cognitive theory framework to guide the application of established self-management interventions to Asian and Pacific Island populations (API) through three conceptually linked research projects on HIV infection, type 2 diabetes, and chronic obstructive pulmonary disease. COSMI addresses the feasibility of sharing of lessons learned among the approaches taken. The interdisciplinary nature of COSMCI increases the potential success of the intervention efforts. Hawaii Medical Journal Copyright 2010.

  7. A literature review on self-care of chronic illness: definition, assessment and related outcomes.

    Science.gov (United States)

    Ausili, Davide; Masotto, Matteo; Dall'Ora, Chiara; Salvini, Lorena; Di Mauro, Stefania

    2014-01-01

    Chronic illnesses care represents a challenging issue for people well-being and future health systems' sustainability. Promotion of self-care is considered a key point for chronically ill patients' care. The aim of this literature was to explore: how self-care of chronic illness has been theoretically defined; how self-care can be assessed in clinical and research settings; what associations exist between self-care and health outcomes of chronically ill patients. A wide range of definitions and terminologies related to self-care of chronic illness has been found in the literature. Although some common elements useful to explain the concept of self-care have been identified, the physical, cognitive, emotional and social processes underlying self-care remain controversial and poorly defined. Valid and reliable disease-specific assessment tools have been developed and used in a growing number of studies; however, the lack of utilization of standardized instruments in clinical practice has been referred by many authors. Significant correlations between self-care of chronic illness and outcome measures e.g. general health status, quality of life and healthcare costs, are reported by a limited number of studies. Supporting patient self-care is recognized as a crucial factor in chronic illness care. A deeper analysis of variables and processes influencing self-care could help for a full description of the phenomenon. A systematic evaluation of self-care in health professionals' everyday clinical practice is strongly recommended. The development of general non-disease-specific assessment tools could facilitate the evaluation of complex patients, especially those with multiple co-morbidities. Although self-care has been recognized as a vital intermediate outcome, further large-scale studies clarifying the association between self-care and patients' and health systems' outcomes are needed.

  8. Finding joy in poor health: The leisure-scapes of chronic illness.

    Science.gov (United States)

    McQuoid, Julia

    2017-06-01

    Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one's body to the 'sick body', and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants' leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure's potential applications in public health. Leisure should be taken seriously as a vehicle for enhancing

  9. Finding joy in poor health: The leisure-scapes of chronic illness

    Science.gov (United States)

    2017-01-01

    Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one’s body to the ‘sick body’, and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants’ leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure’s potential applications in public health. Leisure should be taken seriously as a vehicle for

  10. The consequences of chronic cannabis smoking in vulnerable adolescents.

    Science.gov (United States)

    Iede, Montaha Al; Nunn, Kenneth; Milne, Bronwyn; Fitzgerald, Dominic A

    2017-09-01

    Cannabis, like the mythic shape-shifter, presents in various guises, morphing with the perspective and context of the observer. Arguments about cannabis are confused by a myriad of debates-medical, social, ethical and political-as if a single conceptual umbrella can capture the variety and granularity of marijuana-related issues. This paper responds to marijuana use as it is commonly practised by youth in Australia. It has little to say about synthetic cannabinoids, specific medicinal cannabinoids, or medicinal properties of marijuana. We address those adolescents genetically and environmentally vulnerable to mental illness, with specific emphasis on indigenous and neurodevelopmentally impaired young people who show patterns of usage and response very different to adults and more resilient members of the population. Specifically, the practice of mixing tobacco with marijuana by aboriginal youth, and the resultant coalition of dependencies, will likely presage a rise in pulmonary and central nervous system pathology over the coming decades. Aboriginal youth begin using earlier, persist longer, and take greater quantities of cannabis than non-indigenous youth. This paper recommends practical interventions to reduce the multiple health consequences of chronic cannabis use in young people, especially indigenous young people. Copyright © 2016. Published by Elsevier Ltd.

  11. Chronic comorbidities in children and adolescents with type 1 diabetes

    NARCIS (Netherlands)

    Fazelifarsani, Soulmaz; Souverein, Patrick C.; Van Der Vorst, Marja M.J.; Knibbe, Catherijne A.J.; De Boer, Anthonius; Mantel-Teeuwisse, Aukje K.

    2014-01-01

    Background: Limited quantitative data exist on the burden of chronic comorbidities in children and adolescents with type 1 diabetes (T1D). Such knowledge is necessary for the development of guidelines and prevention programs. Objectives: To determine the incidence of chronic comorbidities in

  12. Cost of Illness of Chronic Hepatitis B Infection in Vietnam

    NARCIS (Netherlands)

    Tu, Hong Anh T.; Woerdenbag, Herman J.; Riewpaiboon, Arthorn; Kane, Sumit; Le, Diep M.; Postma, Maarten J.; Li, Shu Chuen

    2012-01-01

    To estimate the total financial burden of chronic hepatitis B virus (HBV) infection for Vietnam by quantifying the direct medical, the direct nonmedical, and indirect costs among patients with various stages of chronic HBV infection. Direct medical cost data were retrieved retrospectively from

  13. Does trust in health care influence the use of complementary and alternative medicine by chronically ill patients?

    NARCIS (Netherlands)

    Brink-Muinen, A. van den; Rijken, M.

    2006-01-01

    Background: Patients’ trust in health care (professionals) is essential for the effectiveness of health care, especially for chronically ill patients, since chronic diseases are by definition (partly) incurable. Therefore, it may be understandable that the chronically ill turn to complementary and

  14. Does trust in health care influence the use of complementary and alternative medicine by chronically ill people.

    NARCIS (Netherlands)

    Brink-Muinen, A. van den; Rijken, P.M.

    2006-01-01

    Background: People's trust in health care and health care professionals is essential for the effectiveness of health care, especially for chronically ill people, since chronic diseases are by definition (partly) incurable. Therefore, it may be understandable that chronically ill people turn to

  15. Defining the neurotoxin derived illness chronic ciguatera using markers of chronic systemic inflammatory disturbances: a case/control study.

    Science.gov (United States)

    Shoemaker, Ritchie C; House, Dennis; Ryan, James C

    2010-01-01

    Ciguatoxins are extremely potent neurotoxins, produced by tropical marine dinoflagellates, that persistently enter into our food web. Over 100,000 people annually experience acute ciguatera poisoning from consuming toxic fish. Roughly 5% of these victims will develop chronic ciguatera (CC), a widespread, multisymptom, multisystem, chronic illness that can last tens of years. CC is marked by disproportionate disability and non-specific refractory symptoms such as fatigue, cognitive deficits and pain, and is suggestive of other illnesses. Its unknown pathophysiology makes both diagnosis and treatment difficult. We wanted to compare objective parameters of visual contrast sensitivity testing, measures of innate immune response and genetic markers in cases to controls to assess the potential for the presence of persistent inflammatory parameters that are demonstrated in other biotoxin associated illnesses at a single specialty clinic. Using 59 CC cases and 59 controls we present in retrospective review, in all cases, abnormalities in immune responses paralleling the chronic systemic inflammatory response syndrome seen in several other chronic diseases. This study defines a preliminary case definition using medical history, total symptoms, visual contrast sensitivity, HLA DR genotype analysis, reduction of regulatory neuropeptides VIP and MSH, and multiple measures of inflammatory immune response, especially C4a and TGFβ1, thereby providing a basis for identification and targeted therapy. CC provides a model for chronic human illness associated with initiation of inflammatory responses by biologically produced neurotoxins. Copyright © 2010 Elsevier Inc. All rights reserved.

  16. Perceived quality of chronic illness care is associated with self-management: Results of a nationwide study in the Netherlands.

    Science.gov (United States)

    van Houtum, L; Heijmans, M; Rijken, M; Groenewegen, P

    2016-04-01

    Healthcare providers are increasingly expected to help chronically ill patients understand their own central role in managing their illness. The aim of this study was to determine whether experiencing high-quality chronic illness care and having a nurse involved in their care relate to chronically ill people's self-management. Survey data from 699 people diagnosed with chronic diseases who participated in a nationwide Dutch panel-study were analysed using linear regression analysis, to estimate the association between chronic illness care and various aspects of patients' self-management, while controlling for their socio-demographic and illness characteristics. Chronically ill patients reported that the care they received was of high quality to some extent. Patients who had contact with a practise nurse or specialised nurse perceived the quality of the care they received as better than patients who only had contact with a GP or medical specialist. Patients' perceptions of the quality of care were positively related to all aspects of their self-management, whereas contact with a practise nurse or specialised nurse in itself was not. Chronically ill patients who have the experience to receive high-quality chronic illness care that focusses on patient activation, decision support, goal setting, problem solving, and coordination of care are better self-managers. Having a nurse involved in their care seems to be positively valued by chronically ill patients, but does not automatically imply better self-management. Copyright © 2016. Published by Elsevier Ireland Ltd.

  17. Physical activity and school absenteeism due to illness in adolescents

    NARCIS (Netherlands)

    De Groot, Renate; Van Dijk, Martin; Savelberg, Hans; Van Acker, Frederik; Kirschner, Paul A.

    2017-01-01

    Knowledge about the beneficial role of physical activity (PA) for health and school performance is growing. Studies investigating the link between PA and school absenteeism due to illness are lacking. Therefore we investigated associations between habitual PA and school absenteeism due to illness in

  18. Substance use in adolescents with mental illness in Durban, South Africa.

    Science.gov (United States)

    Taukoor, Bhoodeo; Paruk, Saeeda; Karim, Enver; Burns, Jonathan K

    2017-05-01

    Comorbid substance use in adolescents with mental illness is often an indicator of poor treatment outcome. This study aims to determine the prevalence of, and associated risk factors for, substance use in adolescents with mental illness attending a mental health service. Data was collected from hospital records of 162 adolescents, using a structured data sheet, over a two-year period. Substance use was more significant in older adolescents and those with severe mental illness. Sixty-two (38.3%) adolescents used substances. Thirty-seven (38.1%) male adolescents reported substance use compared to 25 (38.5%) female adolescents. Alcohol was the most commonly used substance (n = 48; 29.6%), followed by cannabis (n = 32; 19.8%). There were significant direct associations between substance use and history of abuse or neglect, forensic history, educational setting, admission status, and the psychiatric diagnoses of schizophrenia, other psychotic disorders, and bipolar mood disorder. Inverse associations were found between substance use and adjustment disorders, attention deficit hyperactivity disorder, and intellectual disability. The results of this study indicate an urgent need for substance misuse programmes for at risk youth, and the introduction of dual diagnosis intervention programmes in this age group.

  19. Tools to assess living with a chronic illness: A systematic review.

    Science.gov (United States)

    Ambrosio, Leire; Portillo, Mari Carmen

    2018-05-16

    To analyse the currently available instruments to assess living with a chronic illness and related aspects. A review of the evidence was made using the databases: Medline, CINHAL, PsycINFO, Cochrane Library, Embase and Cuiden. The criteria that limited the search were: the language, English and / or Spanish and studies carried out in an adult population. Years of article publication were not used as a limit. A total of 16 instruments were identified and analysed that apparently measured the concept of living with a chronic illness and/or related aspects. According to the name of the instrument, four seemed to evaluate the concept of living with a chronic illness while the rest of the instruments evaluated aspects intrinsically related to the concept of "living with", such as attributes or the meaning of living with a chronic illness. Different instruments were identified to evaluate daily living for the chronically ill patient, as well as related aspects. According to this review, further validation studies are required in other populations and/or contexts in order to achieve valid and reliable instruments that could be used in clinical practice. Copyright © 2018 Elsevier España, S.L.U. All rights reserved.

  20. Cytokines in chronically critically ill patients after activity and rest.

    Science.gov (United States)

    Winkelman, Chris; Higgins, Patricia A; Chen, Yea Jyh Kathy; Levine, Alan D

    2007-04-01

    Inflammation, a common problem for patients in the intensive care unit (ICU), frequently is associated with serious and prolonged critical illnesses. To date, no study has examined whether physical activity influences inflammatory factors in critically ill adults. The objectives of this study were to (a) examine the relationships between type and duration of physical activity and serum levels of interleukin 6 (IL-6), a proinflammatory cytokine; IL-10, an anti-inflammatory cytokine; and their ratio and (b) determine if there are associations between cytokines or their ratio and activity or outcomes. This descriptive feasibility study investigated the approaches to measuring levels of physical activity and its relationship to serum levels of IL-6 and IL-10 and the ratio between them in patients with prolonged mechanical ventilation during periods of activity and rest. Measurements included serum IL-6 and IL-10 levels, direct observation and actigraphy, and prospective chart review. Ten critically ill patients who were mechanically ventilated for an average of 10 days in a large, urban, teaching hospital were enrolled. The average ratio of IL-6 to IL-10 improved after an average of 14.7 min of passive physical activity, typically multiple in-bed turns associated with hygiene. IL-6, IL-10, and their ratio were not associated with patient outcomes of weaning success or length of stay. High levels of IL-6 were associated with mortality. Cytokine balance may be improved by low levels of activity among patients with prolonged critical illness. The pattern of cytokines produced after activity may improve patients' recovery from prolonged critical illness and mechanical ventilation.

  1. Online self-management interventions for chronically ill patients: cognitive impairment and technology issues.

    Science.gov (United States)

    Archer, Norm; Keshavjee, Karim; Demers, Catherine; Lee, Ryan

    2014-04-01

    As the fraction of the population with chronic diseases continues to grow, methods and/or technologies must be found to help the chronically ill to take more responsibility to self-manage their illnesses. Internet based and/or mobile support for disease self-management interventions have often proved effective, but patients with chronic illnesses may have co-occurring cognitive impairment, making it more difficult for them to cope with technologies. Many older patients are also not familiar with technologies or they may have cognitive disabilities or dementia that reduce their ability to self-manage their healthcare. On-line solutions to the needs of chronically ill patients must be investigated and acted upon with care in an integrated manner, since resources invested in these solutions will be lost if patients do not adopt and continue to use them successfully. To review the capabilities of online and mobile support for self-management of chronic illnesses, and the impacts that age and disease-related issues have on these interventions, including cognitive impairment and lack of access or familiarity with Internet or mobile technologies. This study includes a review of the co-occurrence of cognitive impairment with chronic diseases, and discusses how cognitive impairment, dyadic caregiver patient support, patient efficacy with technology, and smart home technologies can impact the effectiveness and sustainability of online support for disease self-management. Disease self-management interventions (SMIs) using online patient centered support can often enable patients to manage their own chronic illnesses. However, our findings show that cognitive impairment often co-occurs in patients with chronic disease. This, along with age-related increases in multiple chronic illnesses and lack of technology efficacy, can be obstacles to Internet and mobile support for chronic disease self-management. Patients with chronic diseases may have greater than expected difficulties

  2. Integration of Biosensors and Drug Delivery Technologies for Early Detection and Chronic Management of Illness

    Directory of Open Access Journals (Sweden)

    Viness Pillay

    2013-06-01

    Full Text Available Recent advances in biosensor design and sensing efficacy need to be amalgamated with research in responsive drug delivery systems for building superior health or illness regimes and ensuring good patient compliance. A variety of illnesses require continuous monitoring in order to have efficient illness intervention. Physicochemical changes in the body can signify the occurrence of an illness before it manifests. Even with the usage of sensors that allow diagnosis and prognosis of the illness, medical intervention still has its downfalls. Late detection of illness can reduce the efficacy of therapeutics. Furthermore, the conventional modes of treatment can cause side-effects such as tissue damage (chemotherapy and rhabdomyolysis and induce other forms of illness (hepatotoxicity. The use of drug delivery systems enables the lowering of side-effects with subsequent improvement in patient compliance. Chronic illnesses require continuous monitoring and medical intervention for efficient treatment to be achieved. Therefore, designing a responsive system that will reciprocate to the physicochemical changes may offer superior therapeutic activity. In this respect, integration of biosensors and drug delivery is a proficient approach and requires designing an implantable system that has a closed loop system. This offers regulation of the changes by means of releasing a therapeutic agent whenever illness biomarkers prevail. Proper selection of biomarkers is vital as this is key for diagnosis and a stimulation factor for responsive drug delivery. By detecting an illness before it manifests by means of biomarkers levels, therapeutic dosing would relate to the severity of such changes. In this review various biosensors and drug delivery systems are discussed in order to assess the challenges and future perspectives of integrating biosensors and drug delivery systems for detection and management of chronic illness.

  3. Perceived conflict in the couple and chronic illness management: Preliminary analyses from the Quebec Health Survey

    Directory of Open Access Journals (Sweden)

    Hudon Catherine

    2006-10-01

    Full Text Available Abstract Background The quality of the relationship with the spouse/partner appears crucial among patients with multiple chronic conditions where illness management is complex and multifaceted. This study draws on data from the Quebec Health Survey (QHS to examine, among patients with one or more chronic conditions, the relation between marital status, the perceived conflict with the spouse/partner, and what the patients do to manage their illness as well as how they perceive their health. Methods Data from the QHS 1998 were used. The sample included 7547 coupled adults who had one or more chronic health problems lasting more than 6 months. Independent variables included marital status, perceived conflict with the spouse/partner, and the number of chronic conditions. Illness management was defined broadly as a measure of the patient's efforts at self-care and an illness status indicator, including visits to the generalist and the specialist, the use of telephone health line in the last 12 months, self-rated general health, mental health, and a measure of psychological distress. Linkages between the independent variables and illness management were assessed for males and females separately with logistic regressions, while accounting for the survey sampling design and household clustering. Results Female patients who did not live with their partner and had never been married were more likely to report a negative perception of their general health and a higher psychological distress than those who were married. Perceived conflict with the partner was linked to a negative perception of mental health and a higher psychological distress among both men and women. Compared to patients with only one chronic condition, males who reported more than one chronic condition were more likely to have consulted a generalist prior to the survey and used the telephone health line, whereas females were more likely to have consulted a specialist. Both males and

  4. Collaborative Chronic Care Networks (C3Ns) to transform chronic illness care.

    Science.gov (United States)

    Margolis, Peter A; Peterson, Laura E; Seid, Michael

    2013-06-01

    Despite significant gains by pediatric collaborative improvement networks, the overall US system of chronic illness care does not work well. A new paradigm is needed: a Collaborative Chronic Care Network (C3N). A C3N is a network-based production system that harnesses the collective intelligence of patients, clinicians, and researchers and distributes the production of knowledge, information, and know-how over large groups of people, dramatically accelerating the discovery process. A C3N is a platform of "operating systems" on which interconnected processes and interventions are designed, tested, and implemented. The social operating system is facilitated by community building, engaging all stakeholders and their expertise, and providing multiple ways to participate. Standard progress measures and a robust information technology infrastructure enable the technical operating system to reduce unwanted variation and adopt advances more rapidly. A structured approach to innovation design provides a scientific operating system or "laboratory" for what works and how to make it work. Data support testing and research on multiple levels: comparative effectiveness research for populations, evaluating care delivery processes at the care center level, and N-of-1 trials and other methods to select the best treatment of individual patient circumstances. Methods to reduce transactional costs to participate include a Federated IRB Model in which centers rely on a protocol approved at 1 central institutional review board and a "commons framework" for organizational copyright and intellectual property concerns. A fully realized C3N represents a discontinuous leap to a self-developing learning health system capable of producing a qualitatively different approach to improving health.

  5. Patient education: perspective of adolescents with a chronic disease.

    Science.gov (United States)

    Kyngäs, Helvi

    2003-09-01

    The purpose of this study was to describe patient education from the perspective of adolescents. Data were collected by interviewing adolescents who had asthma, epilepsy, juvenile rheumatoid arthritis, and insulin-dependent diabetes mellitus. The sample consisted of 40 Finnish adolescents aged between 13 and 17 years. The interview data were analysed with methods of content analysis. From the perspective of adolescents with a chronic disease, patient education can be divided into the following categories: routine programmes, problematic planning issues, atmosphere of patient education session and written patient education material. Some features of ideal patient education also emerged. In a routine programme, patient education was based on the professional knowledge of the physicians and nurses rather than the needs of the adolescents. It was provided at a time that was good for the nurses or physicians. The level of education was not compatible with each developmental level of the adolescent. Problematic planning issues included a poorly outlined plan of education and a lack of systematic and continuous education. Educational communication consisted of dialogue between the adolescent and the educator. An encouraging atmosphere developed when the educators motivated the adolescents, respected them and their opinions and encouraged them to express their feelings, to ask questions and to relate experiences. Also, it was important that the adolescents' opinions were respected. In ideal patient education, the sessions had been planned well beforehand based on the adolescents' needs and written patient education material. Ideal patient education helped adolescents to acquire skills to take care of themselves and provided information on how to adjust to different situations and problems. The results provided useful insight into patient education and served to raise awareness of the problems and difficulties experienced by adolescents with a chronic disease.

  6. Review article Homebound instruction for students with chronic illness: reducing risk outside of the box

    Directory of Open Access Journals (Sweden)

    Steven R. Shaw

    2014-05-01

    Full Text Available Students with chronic illness are at risk for a host of academic and social problems. The risk is exacerbated when students are unable to attend school short term or long term due to medical problems. Educators may be able to reduce academic and social risk for students with chronic illness through effective homebound instruction. However, there remain many barriers to effective homebowund instruction. Effective interdisciplinary and community coordination, development of policies, teacher support, inclusion of families, and use of technology can be combined to overcome these barriers and create effective homebound programs and policies. The result is reduced risk for the large and vulnerable population of students with chronic illness.

  7. Character Development Pilot Evaluation of Two Programs for Youth with Chronic Illness

    Directory of Open Access Journals (Sweden)

    Gary Maslow

    2016-05-01

    Full Text Available This article describes the pilot evaluation of two Positive Youth Development (PYD programs for youth with child onset chronic illness (COCI, reporting how the programs influenced participants’ character development. College students with COCI led high school students with COCI through activities pertaining to different aspects of growing up with a chronic illness. Participants completed the Positive Youth Development Inventory-Short Form (PYDI-S, which measures seven domains of youth perceptions of the contribution to their development from the program. Participants reported that both programs helped them the most with personal standards, which corresponds well to character development on the full version of the Positive Youth Development Inventory (PYDI. They also had high scores on prosocial behavior and future orientation, both important domains for character development. We discuss the idea that interventions promoting character development for youth with COCI are critical for promoting a positive narrative for chronically-ill youth, their parents, and society.

  8. Alagille Syndrome: A Case Report Highlighting Dysmorphic Facies, Chronic Illness, and Depression

    Directory of Open Access Journals (Sweden)

    James J. Bresnahan

    2016-01-01

    Full Text Available Alagille syndrome is a rare multisystem disorder affecting the liver, heart, vertebrae, eyes, and face. Alagille syndrome shares multiple phenotypic variants of other congenital or chronic childhood illnesses such as DiGeorge syndrome, Down syndrome, spina bifida, type 1 diabetes mellitus, and cystic fibrosis. All of these chronic illnesses have well-established links to psychiatric conditions. There are few community resources for Alagille patients, as it is an extremely rare condition. Despite the overlap with other chronic childhood illnesses, the psychiatric manifestations of Alagille syndrome have not been previously discussed in literature. The current study is a case report of a twelve-year-old female hospitalized in our pediatric psychiatric hospital for suicidal ideation with intent and plan. The patient had major depressive disorder, anxiety, other specified feeding and eating disorder, and attention-deficit/hyperactive disorder.

  9. Quality of life, treatment adherence, and locus of control: multiple family groups for chronic medical illnesses.

    Science.gov (United States)

    López-Larrosa, Silvia

    2013-12-01

    The Multiple Family Groups (MFGs) approach for patients with a chronic medical illness and their families is a structured psychoeducational program that unfolds in six weekly 90-minute sessions. In the MFGs, patients and family members explore new ways to balance illness and nonillness priorities in family life (Steinglass, 1998; Steinglass, 2000 Cuadernos de Terapia Familiar, 44-45, 11; Steinglass, Ostroff, & Steinglass, 2011 Family Process, 50, 393). © FPI, Inc.

  10. The economic impact of the insured patients with severe chronic and acute illnesses: a qualitative approach

    Directory of Open Access Journals (Sweden)

    Budi Aji

    2014-10-01

    Full Text Available Background: Little research has focused on the economic hardship among the insured with severe illnesses and high treatment costs, in particular, the consequence of poorer insurance coverage for high-cost illnesses. Therefore, we presented the case for identifying the experiences of insured patients with severe chronic and acute illnesses. This study identified a qualitative understanding of the economic impact of severe chronic and acute illnesses and household strategies to deal with high treatment costs. Design: Interviews were conducted with 19 insured households of three different health insurance programs with a family member that had been hospitalized for severe chronic or acute illnesses in either Banyumas or Margono Sukarjo hospitals in Banyumas, Central Java, Indonesia. A thematic analysis was applied to guide the interpretation of the data. Results: Insured households with a family member that had been hospitalized for severe chronic and acute illnesses were greatly affected by the high treatment costs. Four major issues emerged from this qualitative study: insured patients are still burdened with high out-of-pocket payments, households adopt various strategies to cope with the high cost of treatments, households experience financial hardships, and positive and negative perceptions of the insured regarding their health insurance coverage for acute and chronic illnesses. Conclusions: Askes and Jamsostek patients faced financial burdens from high cost sharing for hospital amenities, non-covered drugs, and treatments and other indirect costs. Meanwhile, Jamkesmas beneficiaries faced no financial burden for related medical services but were rather burdened with indirect costs for the carers. Households relied on internal resources to cover hospital bills as the first strategy, which included the mobilization of savings, sale of assets, and borrowing of money. External support was tapped secondarily and included financial support from

  11. Perceptions of chronically ill and healthy consumers about electronic personal health records: a comparative empirical investigation.

    Science.gov (United States)

    Cocosila, Mihail; Archer, Norm

    2014-07-23

    To develop a model of consumer perceptions of electronic personal health records (PHRs) and validate it in a comparative study between consumers who report having a chronic illness and those who report being well. A model of PHR use motivators and barriers was built and tested through a national survey across Canada. Data were collected from 800 individuals, 18 years or older. Half reported having a chronic illness or disability and half reported being well. Analyses were performed with structural equation modelling techniques. A total of 389 answers from chronically ill and 383 from well participants were collected. Perceived usefulness was the key explanation of the intention to use PHRs for both ill and well people (total effect of 0.601 and 0.565, respectively) followed by security, privacy and trust in PHRs (total effect of 0.377 and 0.479, respectively). Conversely, computer anxiety was perceived as a significant barrier (total effect of -0.327 for ill individuals and -0.212 for well individuals). The model proposed was appropriate in explaining key consumer positive and negative perceptions on electronic PHR use. We found little difference in perceptions of electronic PHRs between chronically ill and well individuals, although self-reporting their health status might have influenced the results. To increase the adoption rate of electronic PHRs among both chronically ill and well consumers it is necessary to reinforce consumer perceptions of the usefulness of and trust in these eHealth technologies while mitigating their anxieties about computer use in general. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  12. Illness representations and coping as predictors of emotional well-being in adolescents with type 1 diabetes

    DEFF Research Database (Denmark)

    Edgar, K. A.; Skinner, T. C.

    2003-01-01

    Objectives: To test whether coping acts to mediate the relationships between illness representations and emotional well-being in adolescents with diabetes. Methods: Seventy adolescents between 11 and 18 years of age were asked to complete the Diabetes Illness Representations Questionnaire (DIRQ),...

  13. Post-millennial trends of socioeconomic inequalities in chronic illness among adults in Germany.

    Science.gov (United States)

    Hoebel, Jens; Kuntz, Benjamin; Moor, Irene; Kroll, Lars Eric; Lampert, Thomas

    2018-03-27

    Time trends in health inequalities have scarcely been studied in Germany as only few national data have been available. In this paper, we explore trends in socioeconomic inequalities in the prevalence of chronic illness using Germany-wide data from four cross-sectional health surveys conducted between 2003 and 2012 (n = 54,197; ages 25-69 years). We thereby expand a prior analysis on post-millennial inequality trends in behavioural risk factors by turning the focus to chronic illness as the outcome measure. The regression-based slope index of inequality (SII) and relative index of inequality (RII) were calculated to estimate the extent of absolute and relative socioeconomic inequalities in chronic illness, respectively. The results for men revealed a significant increase in the extent of socioeconomic inequalities in chronic illness between 2003 and 2012 on both the absolute and relative scales (SII 2003  = 0.06, SII 2012  = 0.17, p-trend = 0.013; RII 2003  = 1.18, RII 2012  = 1.57, p-trend = 0.013). In women, similar increases in socioeconomic inequalities in chronic illness were found (SII 2003  = 0.05, SII 2012  = 0.14, p-trend = 0.022; RII 2003  = 1.14, RII 2012  = 1.40, p-trend = 0.021). Whereas in men this trend was driven by an increasing prevalence of chronic illness in the low socioeconomic group, the trend in women was predominantly the result of a declining prevalence in the high socioeconomic group.

  14. Pilot undergraduate course teaches students about chronic illness in children: an educational intervention study.

    Science.gov (United States)

    Montenegro, Roberto E; Birnie, Krista D; Fisher, Paul Graham; Dahl, Gary V; Binkley, John; Schiffman, Joshua D

    2014-01-01

    Recent data question whether medical education adequately prepares physicians to care for the growing number of children with chronic medical conditions. We describe a 10-week course designed to provide undergraduate students with the knowledge and skills required to understand and care for children with chronic or catastrophic illnesses. The course presented the illness experience from the child's perspective and thus presented information in a manner that was efficient, conducive, and memorable. The curriculum was designed like a graduate-level seminar that included workshops, lectures, readings, writing, and lively discussions. This is an educational intervention study that used survey data to assess changes in attitudes among and between participants completing this course versus students not exposed to this course. We used Somers' D test and Fisher's z-transformation to perform both pre- and post-nonparametric comparisons. Course participants were more likely to change their attitudes and agree that chronically ill children "feel comfortable talking with their peers about their condition" (P=0.003) and less likely to agree that these children "want to be treated differently," "want more sympathy," or "care less about romantic relationships" (P = 0.003, 0.002 and 0.02, respectively). Controls were more likely to continue to agree that chronically ill children "want to be treated differently" (P = 0.009) and "care less about romantic relationships" (P = 0.02), and less likely to agree that these children "talk openly" or "feel comfortable talking with their peers about their condition" (P = 0.04). This classroom-based course serves as a feasible and cost-effective model for universities and medical schools to aid in improving student attitudes toward treating chronically ill children. The course provides the unique opportunity to learn directly from those who care for and those who have lived with chronic illness.

  15. Psychological interventions for mental health disorders in children with chronic physical illness: a systematic review.

    Science.gov (United States)

    Bennett, Sophie; Shafran, Roz; Coughtrey, Anna; Walker, Susan; Heyman, Isobel

    2015-04-01

    Children with chronic physical illness are significantly more likely to develop common psychiatric symptoms than otherwise healthy children. These children therefore warrant effective integrated healthcare yet it is not established whether the known, effective, psychological treatments for symptoms of common childhood mental health disorders work in children with chronic physical illness. EMBASE, MEDLINE, PsycINFO and CINAHL databases were searched with predefined terms relating to evidence-based psychological interventions for psychiatric symptoms in children with chronic physical illness. We included all studies (randomised and non-randomised designs) investigating interventions aimed primarily at treating common psychiatric symptoms in children with a chronic physical illness in the review. Two reviewers independently assessed the relevance of abstracts identified, extracted data and undertook quality analysis. Ten studies (209 children, including 70 in control groups) met the criteria for inclusion in the review. All studies demonstrated some positive outcomes of cognitive behavioural therapy for the treatment of psychiatric symptoms in children with chronic physical illness. Only two randomised controlled trials, both investigating interventions for symptoms of depression, were found. There is preliminary evidence that cognitive behavioural therapy has positive effects in the treatment of symptoms of depression and anxiety in children with chronic physical illness. However, the current evidence base is weak and fully powered randomised controlled trials are needed to establish the efficacy of psychological treatments in this vulnerable population. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  16. Reforming funding for chronic illness: Medicare-CDM.

    Science.gov (United States)

    Swerissen, Hal; Taylor, Michael J

    2008-02-01

    Chronic diseases are a major challenge for the Australian health care system in terms of both the provision of quality care and expenditure, and these challenges will only increase in the future. Various programs have been instituted under the Medicare system to provide increased funding for chronic care, but essentially these programs still follow the traditional fee-for-service model. This paper proposes a realignment and extension of current Medicare chronic disease management programs into a framework that provides general practitioners and other health professionals with the necessary "tools" for high quality care planning and ongoing management, and incorporating international models of outcome-linked funding. The integration of social support services with the Medicare system is also a necessary step in providing high quality care for patients with complex needs requiring additional support.

  17. Collaborative decision-making and promoting treatment adherence in pediatric chronic illness

    Directory of Open Access Journals (Sweden)

    Dennis Drotar

    2010-03-01

    Full Text Available Dennis Drotar, Peggy Crawford, Margaret BonnerCincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USAAbstract: Collaborative or shared decision-making between health care providers and families can facilitate treatment adherence, health outcomes, and satisfaction with care in the management of pediatric chronic illness, but raises special challenges. Barriers such as authoritarian models of medical care as well as absence of time and opportunity for dialogue limit collaborative decision making and can disrupt treatment adherence. However, models of provider-family communication that emphasize communication and shared goal-setting inform an anticipatory guidance model of collaborative decision-making that can enhance treatment adherence. Salient challenges and strategies involved in implementing collaborative decision-making in pediatric chronic illness care are described. Research is needed to: 1 describe the communication and decision-making process in the management of pediatric chronic illness; and 2 evaluate the impact of interventions that enhance collaborative decision-making on provider-family communication, illness management, and treatment adherence.Keywords: collaborative decision-making, shared decision-making, treatment adherence, pediatric chronic illness

  18. Paradise regained: how elderly people who are chronically mentally ill reinvent a social self.

    Science.gov (United States)

    van Dongen, E

    2001-01-01

    Throughout their lives, chronic mentally ill people go through a series of disruptive events and periods of suffering. In general, the literature suggests that people with long-standing mental illnesses are extremely vulnerable and cannot maintain themselves without assistance. When old age is added to this mix, the result is a heavy burden for both the patient and the caregiver. While the negative consequences, for both patient and caregiver, of suffering chronic illness during old age must not be ignored, neither should the positive periods in these people's lives. There are times when the mutual identification between cold and young yields vivid examples of the latter's ability to reconstitute a social self. In this paper I look at chronic illness in old age as a struggle on the part of the sufferer to reconcile her/his experiences of suffering in the light of approaching death. I attempt to show that the process of aging with a chronic mental illness involves not only decay and suffering, but also resilience and vitality.

  19. Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness

    DEFF Research Database (Denmark)

    Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo

    2017-01-01

    This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant...... selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities...... everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns....

  20. Chronic stress and illness in children: the role of allostatic load.

    Science.gov (United States)

    Johnston-Brooks, C H; Lewis, M A; Evans, G W; Whalen, C K

    1998-01-01

    Recent studies of stress have highlighted the contributions of chronic psychological and environmental stressors to health and well-being. Children may be especially vulnerable to the negative effects of chronic stressors. Allostasis, the body's ability to adapt and adjust to environmental demands, has been proposed as an explanatory mechanism for the stress-health link, yet empirical evidence is minimal. This study tested the proposition that allostasis may be an underlying physiological mechanism linking chronic stress to poor health outcomes in school-aged children. Specifically, we examined whether allostasis would mediate or moderate the link between chronic stress and health. To test the hypothesis that allostasis contributes to the relation between chronic stress and poor health, we examined household density as a chronic environmental stressor, cardiovascular reactivity (CVR) as a marker of allostatic load, and number of school absences due to illness as the health outcome in a sample of 81 boys. Structural equation modeling indicated that the mediating model fit the data well, accounting for 17% of the variance in days ill. Results provide the first evidence that CVR may mediate the relation between household density and medical illness in children. More generally, these findings support the role of allostasis as an underlying mechanism in the link between chronic stress and health.

  1. Patient-Assessed Chronic Illness Care (PACIC scenario in an Indian homeopathic hospital

    Directory of Open Access Journals (Sweden)

    Munmun Koley

    2016-01-01

    Full Text Available Homeopathy research has focused on chronic conditions; however, the extent to which current homeopathic care is compliant with the Chronic Care Model (CCM has been sparsely shown. As the Bengali Patient-Assessed Chronic Illness Care (PACIC-20 was not available, the English questionnaire was translated and evaluated in a government homeopathic hospital in West Bengal, India. The translation was done in six steps, and approved by an expert committee. Face validity was tested by 15 people for comprehension. Test/retest reliability (reproducibility was tested on 30 patients with chronic conditions. Internal consistency was tested in 377 patients suffering from various chronic conditions. The questionnaire showed acceptable test/retest reliability [intraclass correlation coefficient (ICC 0.57–0.75; positive to strong positive correlations; p0.05; however, monthly household income had a significant influence (p<0.05 on the subscales except for “delivery system or practice design.” Overall, chronic illness care appeared to be quite promising and CCM-compliant. The psychometric properties of the Bengali PACIC-20 were satisfactory, rendering it a valid and reliable instrument for assessing chronic illness care among the patients attending a homeopathic hospital.

  2. Increased risk of treatment with antidepressants in stroke compared with other chronic illness

    DEFF Research Database (Denmark)

    Dam, Henrik; Harhoff, Mette; Andersen, Per Kragh

    2007-01-01

    The prevalence of depression and anxiety is higher in patients with stroke than in the general population but it is unclear whether patients with stroke are at an increased risk of being treated for depression and anxiety compared with patients with other chronic illness. The objective...... of the present study was to investigate whether the rate of treatment with antidepressants is increased in patients with stroke compared with patients with other chronic illness and compared with the general population. By linkage of nationwide case registers, all patients who received a main diagnosis of stroke...

  3. Care meanings, expressions, and experiences of those with chronic mental illness.

    Science.gov (United States)

    George, Tamara B

    2002-02-01

    The care meanings, expressions, and experiences of those with a chronic mental illness living in the community were explored with use of Leininger's Theory of Culture Care Diversity and Universality and the Sunrise Model. Results indicate that people with chronic mental illness have identifiable values, norms, and lifeways that set them apart from the dominant culture. Cultural and social structure factors, ethnohistory, and environmental context influence their desired care. Nurses can use this knowledge to provide culturally congruent care in new ways to enhance the quality of life, productivity, and well-being of this subculture. Copyright 2002 by W.B. Saunders Company

  4. The chronically mentally ill in community facilities. A study of quality of life.

    Science.gov (United States)

    Simpson, C J; Hyde, C E; Faragher, E B

    1989-01-01

    The quality of life of chronically mentally ill patients in acute wards in a district general hospital, a hostel ward and group homes was compared. Within the spectrum of care of these patients, the severity of psychopathology corresponded to their placement. Analysis, including adjustments for the influence of psychopathology, showed differences between the three types of facility. Although differences existed between all types of care, residents in group homes and the hostel ward shared more similarities in quality of life than those in the district general hospital. Problems of caring for the chronically mentally ill on acute wards are highlighted.

  5. Systematic Review: Bullying Involvement of Children With and Without Chronic Physical Illness and/or Physical/Sensory Disability-a Meta-Analytic Comparison With Healthy/Nondisabled Peers.

    Science.gov (United States)

    Pinquart, Martin

    2017-04-01

    To compare levels of victimization and perpetration associated with bullying among children and adolescents with and without chronic physical illnesses and/or physical or sensory disabilities. In total, 107 studies were identified using a systematic search in electronic databases and cross-referencing. A random-effects meta-analysis was computed. Children and adolescents with chronic physical illness or disability were more likely to be victims of bullying in general (odds ratio [OR] = 1.65), particularly physical bullying (OR = 1.47), relational bullying (OR = 1.47), verbal bullying (OR = 1.67), cyberbullying (OR = 1.39), and illness-specific teasing (OR = 5.29). They were also more likely to be bullies in general (OR = 1.28), as well physical (OR = 1.38) and relational bullies (OR = 1.13). The effect sizes varied across different illnesses and disabilities and, in part, by visibility of the disease, school type, and year of assessment. Although most between-group differences tend to be small, some form of intervention is needed to reduce bullying among children and adolescents with chronic physical illnesses and/or physical or sensory disabilities, and illness-specific weight- and appearance-related teasing in particular. © The Author 2016. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  6. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

    Directory of Open Access Journals (Sweden)

    Meerman Martha GM

    2011-05-01

    Full Text Available Abstract Background Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs and human resource managers (HRM. Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Methods Concept mapping methodology was used to elicit and map statements (ideas from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Results Participants generated 35 statements. Each group (LMs and HRM sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. Conclusions There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health

  7. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers.

    Science.gov (United States)

    Haafkens, Joke A; Kopnina, Helen; Meerman, Martha G M; van Dijk, Frank J H

    2011-05-17

    Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs) and human resource managers (HRM). Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Concept mapping methodology was used to elicit and map statements (ideas) from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Participants generated 35 statements. Each group (LMs and HRM) sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health researchers and planners should address in developing job retention

  8. Chronic Fatigue Syndrome Following Infectious Mononucleosis in Adolescents: A Prospective Cohort Study

    Science.gov (United States)

    Katz, Ben Z.; Shiraishi, Yukiko; Mears, Cynthia J.; Binns, Helen J.; Taylor, Renee

    2008-01-01

    Background Chronic fatigue syndrome (CFS) is a complex and controversial condition responsible for marked functional impairment. Infectious mononucleosis (IM) may be a predisposing factor for CFS. Among adults after IM, 9-12% may have symptomatic fatigue 6 months later. Rates of CFS in the general adolescent population are low (0.2%). Objective To prospectively characterize the course and outcome of CFS in adolescents during a 2 year period following IM. Design/Methods 301 adolescents (12-18 years) with IM were identified and screened for non-recovery 6 months following IM using a telephone screening interview. Non-recovered adolescents underwent a medical evaluation, and had follow-up screening at 12 and 24 months following IM. Following blind review, final diagnoses of CFS were made at 6, 12 and 24 months using established pediatric criteria. Results 6, 12 and 24 months following IM, 13%, 7% and 4%, respectively, of adolescents met criteria for CFS. Most individuals recovered with time; only 2 adolescents with CFS at 24 months seemed to have recovered or had an explanation for CFS at 12 months but then were reclassified as CFS at 24 months. All 13 adolescents with CFS 24 months following IM were female and on average reported greater fatigue severity at 12 months. Reported use of steroid therapy during the acute phase of IM did not increase the risk of developing CFS. Conclusions IM thus may be a risk factor for CFS in adolescents. Female gender and greater fatigue severity, but not reported steroid use during the acute illness, were associated with the development of CFS in adolescents. Further research is needed to determine other predictors of persistent fatigue following IM. PMID:19564299

  9. A qualitative investigation of eating difficulties in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis.

    Science.gov (United States)

    Harris, Sarah; Gilbert, Matthew; Beasant, Lucy; Linney, Catherine; Broughton, Jessica; Crawley, Esther

    2017-01-01

    An estimated 10% of children and adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) experience eating difficulties; however, little is known about why these difficulties develop, what the impact is or how to manage them. Semi-structured interviews were conducted with adolescents (aged 12-17 years) attending a specialist service who have a primary diagnosis of CFS/ME and experience nausea, abdominal pain and/or eating difficulties. A total of 11 adolescents were interviewed (eight female, mean age: 15 years). Transcripts were analysed thematically using techniques of constant comparison which commenced soon after data collection and informed further interview protocols. Adolescents perceived their eating difficulties were caused by abdominal symptoms, being too fatigued to eat and changes to their senses of taste and smell. Some of the adolescents recognised how their eating difficulties were exacerbated and maintained by psychological factors of low mood and anxiety. The adolescents eating difficulties had a negative impact on their weight, fatigue, socialising and family life. They perceived helpful interventions to include modifying their diets, families adjusting and also medical interventions (e.g. medication). Adolescents identified that early education and support about diet and eating habits would have been helpful. If adolescents diagnosed with CFS/ME develop eating difficulties, this has a significant impact on their quality of life, illness and on their families. Not eating increases fatigue, low mood and anxiety which further exacerbates the eating difficulties. Clinicians should screen for eating difficulties in those with symptoms of nausea and abdominal pain, warn adolescents and their families of the risk of developing eating difficulties and provide interventions and support as early as possible.

  10. Frequency of MMPI Profile Types in Three Chronic Illness Populations.

    Science.gov (United States)

    Naliboff, Bruce D.; And Others

    1983-01-01

    Developed sorting rules to identify Minnesota Multiphasic Personality Inventory configurations and applied these to patients with chronic low back pain, migraine headaches, hypertension, and diabetes (N=157). Results showed that profile types did not differ in frequency among the groups but were more elevated in the back pain patients. (LLL)

  11. Chronic Neurodegenerative Illnesses and Epilepsy in Danish Adventists and Baptists

    DEFF Research Database (Denmark)

    Thygesen, Lau Caspar; Gimsing, Louise Nørreslet; Bautz, Andrea

    2017-01-01

    BACKGROUND: Limited knowledge of the influence of lifestyle risk factors and religious living on chronic neurological diseases exist. Seventh-day Adventists (SDA) do not consume tobacco, alcohol, or pork, and many adhere to lacto-ovo-vegetarian diet, and Baptists discourage excessive use of alcohol...

  12. Reports of chronic pain in childhood and adolescence among patients at a tertiary care pain clinic.

    Science.gov (United States)

    Hassett, Afton L; Hilliard, Paul E; Goesling, Jenna; Clauw, Daniel J; Harte, Steven E; Brummett, Chad M

    2013-11-01

    Although chronic pain in childhood can last into adulthood, few studies have evaluated the characteristics of adults with chronic pain who report childhood chronic pain. Thus, 1,045 new patients (mean age, 49.5 ± 15.4) at an academic tertiary care pain clinic were prospectively evaluated using validated self-report questionnaires. Patients also responded to questions about childhood pain. We found that almost 17% (n = 176) of adult chronic pain patients reported a history of chronic pain in childhood or adolescence, with close to 80% indicating that the pain in childhood continues today. Adults reporting childhood chronic pain were predominantly female (68%), commonly reported widespread pain (85%), and had almost 3 times the odds of meeting survey criteria for fibromyalgia (odds ratio [OR] = 2.94, 95% confidence interval [CI] = 2.04-4.23) than those denying childhood chronic pain. Similarly, those with childhood pain had twice the odds of having biological relatives with chronic pain (OR = 2.03, 95% CI = 1.39-2.96) and almost 3 times the odds of having relatives with psychiatric illness (OR = 2.85, 95% CI = 1.97-4.11). Lastly, compared to patients who did not report childhood chronic pain, those who did were more likely to use neuropathic descriptors for their pain (OR = 1.82, 95% CI = 1.26-2.64), have slightly worse functional status (B = -2.12, t = -3.10, P = .002), and have increased anxiety (OR = 1.77, 95% CI = 1.24-2.52). Our study revealed that 1 in 6 adult pain patients reported pain that dated back to childhood or adolescence. In such patients, evidence suggested that their pain was more likely to be widespread, neuropathic in nature, and accompanied by psychological comorbidities and decreased functional status. Copyright © 2013 American Pain Society. Published by Elsevier Inc. All rights reserved.

  13. Adaptation and validation of the German Patient Activation Measure for adolescents with chronic conditions in transitional care: PAM® 13 for Adolescents.

    Science.gov (United States)

    Bomba, Franziska; Markwart, Henriette; Mühlan, Holger; Menrath, Ingo; Ernst, Gundula; Thyen, Ute; Schmidt, Silke

    2018-02-01

    Measuring adolescent patients' engagement in their health care is especially important in preparing for chronically ill adolescents' transition into adult care. In this study, we aimed to create an adolescent version of the German language Patient Activation Measure (PAM-13-D) originally tested in in adults and psychometrically test the adapted measure (PAM ® 13 for Adolescents). After linguistic and content-related adaptations, the PAM ® 13 for Adolescents was tested in a large sample of adolescents with different chronic conditions (N = 586, mean age 17.5 years, SD = 1.4) in 40 health centers. Internal consistency was assessed with Cronbach's alpha and test-retest reliability with Pearson correlation. Convergent and divergent validity were calculated with Pearson correlations between the two IE-4 scales (internal and external Locus of Control) and the PAM ® 13 for Adolescents. Known-group validity (type 1 diabetes vs. IBD, higher vs. lower education level) was checked by Mann-Whitney-U-tests. The PAM ® 13 for Adolescents showed good test-retest reliability (rtt = .68), internal consistency (α = .79) and demonstrated good validity. The original structure of the PAM 13-D was replicated. Rasch analysis using the partial credit model was used to investigate the operating characteristics of the items. Rasch analysis indicated a sufficient fit of 12 of the 13 items. PAM ® 13 for Adolescents is the first instrument measuring patient activation of adolescents with chronic conditions in a broad age range. Patient activation level can be used by clinicians to better plan and structure transition processes. © 2017 Wiley Periodicals, Inc.

  14. The role of disease management programs in the health behavior of chronically ill patients.

    Science.gov (United States)

    Cramm, Jane Murray; Adams, Samantha A; Walters, Bethany Hipple; Tsiachristas, Apostolos; Bal, Roland; Huijsman, Robbert; Rutten-Van Mölken, Maureen P M H; Nieboer, Anna Petra

    2014-04-01

    Investigate the effects of disease management program (DMP) implementation on physical activity, smoking, and physical quality of life among chronically ill patients. This study used a mixed-methods approach involving qualitative (35 interviews with project managers) and quantitative (survey of patients from 18 DMPs) data collection. Questionnaire response rates were 51% (2010; 2619/5108) at T0 and 47% (2011; 2191/4693) at T1. Physical activity and the percentage of smokers improved significantly over time, whereas physical quality of life declined. After adjusting for patients' physical quality of life at T0, age, educational level, marital status, and gender, physical activity at T0 (pmanagers reported that DMPs improved patient-professional interaction. The ability to set more concrete targets improved patients' health behaviors. DMPs appear to improve physical activity among chronically ill patients over time. Furthermore, (changes in) health behavior are important for the physical quality of life of chronically ill patients. Redesigning care systems and implementing DMPs based on the chronic care model may improve health behavior among chronically ill patients. Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

  15. Higher education attainment does not improve the adult employment outcomes of adolescents with ill health

    Directory of Open Access Journals (Sweden)

    Emily Joy Callander

    2016-07-01

    Full Text Available This paper assesses whether attaining a higher education improves the chances of employment in adulthood amongst those who had a chronic health condition in adolescence. Using longitudinal analysis of twelve waves of the nationally representative Household Income and Labour Dynamics in Australia Survey, conducted between 2001 and 2012, a cohort of adolescents aged 15 to 21 in Wave 1 were followed through to age 24 (n=624. The results show that those who did have a chronic health condition during adolescence were2.4 times more likely to  not be employed at age 24 compared to those who did not have a chronic health condition (95% CI: 1.4 – 4.4, p=0.0024.  The results were adjusted for age, sex, education attainment at age 24, health status at age 24 and household income poverty status at age 24. Amongst those who did have a chronic health condition during adolescence there was no significant difference in the likelihood of being employed for those with a Year 12 and below (p=0.1087 level of education attainment or those with a Diploma, Certificate III or IV (p=0.6366 compared to those with a university degree. Education attainment was not shown to mitigate the impact of having a chronic health condition during adolescence on adult employment outcomes. Keywords: employment; chronic health conditions; poverty; living standards; longitudinal.

  16. Management of chronic daily headache in children and adolescents.

    Science.gov (United States)

    Mack, Kenneth J; Gladstein, Jack

    2008-01-01

    Chronic daily headache (CDH) occurs in 1-2% of children and adolescents. It can evolve from either episodic tension-type headache or episodic migraine, or can appear with no previous headache history. As with other primary headache disorders, treatment is based on the level of disability. There are children and adolescents who cope well, but there are others who are markedly disabled by their chronic headaches. As in adults, children and adolescents with CDH are at risk for medication overuse. CDH is a diagnosis of exclusion, based on a thorough history, normal physical examination, and negative neuroimaging findings. Along with the chronic headaches, children with this condition may have co-morbid sleep problems, autonomic dysfunction, anxiety, and/or depression. Principles of treatment include identifying migrainous components, stopping medication overuse, stressing normalcy, using rational pharmacotherapy, and addressing co-morbid conditions. Successful outcomes often involve identifying an appropriate headache preventative, reintegration into school, and family participation in resetting realistic expectations.

  17. Chronotope Disruption as a Sensitizing Concept for Understanding Chronic Illness Narratives

    Science.gov (United States)

    2014-01-01

    Objectives: This article aims to elaborate chronotope disruption —a changed relation to time and space— as a sensitizing concept for understanding chronic illness narratives. Methods: Sixteen men and 16 women with Type 2 diabetes were purposefully sampled. Each was interviewed about his or her experience of diabetes self-management using the biographical-narrative interview method. Transcripts were inspected for key moments defined as emotionally laden stories relevant to the purpose of the research. We present dialogically inflected discursive analysis of exemplar extracts. Results: The analysis demonstrates how the concept of chronotope disruption helps identify, and understand, important aspects of patients’ chronic illness narratives. First, we investigate how medical advice can conflict with embodied experience and how progressive bodily deterioration can provoke a reevaluation of past illness (self-mis)management. Second, the increasing temporal and spatial intrusion of chronic illness into participants’ lives is examined. Finally, we focus on the masquerade of health as an attempt to manage, hide, or deny that one is physically challenged. Conclusions: Chronotope disruption offers a useful sensitizing concept for approaching chronic illness narratives and around which to organize analytical insights and to develop practice. Chronotope analysis fills an important gap in the science through compensating current health sciences’ focus on rationality, cognition, and prospective time (prediction) with a patient-oriented focus on emotionality, embodiment, and retrospective time (nostalgia). Chronotope disruption could be used to develop practice by gaining empathic understanding of patients’ life-worlds and provides a tool to examine how new technologies change the way in which the chronically ill have “being” in the world. PMID:25197985

  18. Emotional and behavioural problems in adolescents with intellectual disability with and without chronic diseases

    NARCIS (Netherlands)

    Oeseburg, B.; Jansen, D. E. M. C.; Groothoff, J. W.; Dijkstra, G. J.; Reijneveld, S. A.

    Background Adolescents with intellectual disability (ID) (ID-adolescents) and adolescents with chronic diseases are both more likely to have emotional and behavioural problems. The aim of this study was to assess the association between chronic diseases in ID-adolescents and emotional and

  19. [Between taking responsibility and becoming independent. Adolescents with a mentally ill parent].

    Science.gov (United States)

    Stelling, Kirsten; Habers, Ingeborg; Jungbauer, Johannes

    2008-01-01

    By now there is a relatively broadly based basic research as to burden and developmental risks in children of mentally ill parents. Nevertheless, hardly any studies exist focusing the living situation of teenagers concerned. This article presents results from an in-depth interview study with 15 adolescents (15 to 21 years old) who have a mentally ill parent. Particularly, the living situation of the study participants was explored from the perspective of developmental psychology, i. e. considering age-specific developmental tasks. The results show that, in many cases, daily life and future perspectives of adolescents are greatly affected by the mental illness of a parent. Based on the results of the study, the article presents conclusions for further research and psychosocial practice. Generally, professional assistance for children of mentally ill people should be on hand as early as possible. When planning specific help offers for adolescents affected, compatibility to their emotional life-world should be taken into consideration. Involving peer counsellors and offering web-based psychological assistance can contribute to better get in touch with adolescent clients.

  20. The Relation Between Parental Mental Illness and Adolescent Mental Health: The Role of Family Factors

    NARCIS (Netherlands)

    Loon, L.M.A. van; Ven, M.O.M. van de; Doesum, K.T.M. van; Witteman, C.L.M.; Hosman, C.M.H.

    2014-01-01

    Children of parents with a mental illness are often found to be at high risk of developing psychological problems themselves. Little is known about the role of family factors in the relation between parental and adolescent mental health. The current study focused on parent-child interaction and

  1. Chronic Stress in Adolescents and Its Neurobiological and Psychopathological Consequences: An RDoC Perspective.

    Science.gov (United States)

    Sheth, Chandni; McGlade, Erin; Yurgelun-Todd, Deborah

    2017-01-01

    The Research Domain Criteria (RDoC) initiative provides a strategy for classifying psychopathology based on behavioral dimensions and neurobiological measures. Neurodevelopment is an orthogonal dimension in the current RDoC framework; however, it has not yet been fully incorporated into the RDoC approach. A combination of both a neurodevelopmental and RDoC approach offers a multidimensional perspective for understanding the emergence of psychopathology during development. Environmental influence (e.g., stress) has a profound impact on the risk for development of psychiatric illnesses. It has been shown that chronic stress interacts with the developing brain, producing significant changes in neural circuits that eventually increase the susceptibility for development of psychiatric disorders. This review highlights effects of chronic stress on the adolescent brain, as adolescence is a period characterized by a combination of significant brain alterations, high levels of stress, and emergence of psychopathology. The literature synthesized in this review suggests that chronic stress-induced changes in neurobiology and behavioral constructs underlie the shared vulnerability across a number of disorders in adolescence. The review particularly focuses on depression and substance use disorders; however, a similar argument can also be made for other psychopathologies, including anxiety disorders. The summarized findings underscore the need for a framework to integrate neurobiological findings from disparate psychiatric disorders and to target transdiagnostic mechanisms across disorders.

  2. Factors Contributing to Psycho-Social Ill-Health in Male Adolescents

    Directory of Open Access Journals (Sweden)

    Gurpreet Singh Chhabra

    2011-11-01

    Full Text Available Objective: To study the prevalence of psychosocial problems in male adolescents and find out various factors contributing to psycho-social ill health. Methods: 500 adolescents were interviewed using a pre-tested structured questionnaire to elicit the information about the psychosocial problems including depression, suicidal thoughts and suicidal attempts. Association of academic performance, family problems, psychological problems and substance abuse was also included. Results: More than one third (39.6% adolescents were having psychological problems. These problems were significantly higher in middle adolescence (14-16 years, large extended families (> 8 members and lower socioeconomic status. Residence had no significant relation to psychological problems in the adolescents. On correlation, these adolescents with psychological problems were having significantly more academic problems, family disputes, domestic violence, lesser number of close friends and greater substance abuse. Conclusion: Considering that male adolescents from large families with lesser education and lower income had higher prevalence of psychosocial problems, it is essential for health care planners to design comprehensive family and health education programs for the adolescents. The family support, teacher student rapport and peer group communication should be strengthened to counteract unsafe behaviours in the adolescents.

  3. Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

    Science.gov (United States)

    Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

    2015-10-12

    Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO's definition of health, health was indeed one of the most important factors when the decision to return was made.

  4. The Future of Psychotherapy for Mentally Ill Children and Adolescents

    Science.gov (United States)

    March, John S.

    2009-01-01

    Objective: Given striking advances in translational developmental neuroscience and its convergence with developmental psychopathology and developmental epidemiology, it is now clear that mental illnesses are best thought of as neurodevelopmental disorders. This simple fact has enormous implications for the nature and organization of psychotherapy…

  5. The relationship of parental overprotection, perceived child vulnerability, and parenting stress to uncertainty in youth with chronic illness.

    Science.gov (United States)

    Mullins, Larry L; Wolfe-Christensen, Cortney; Pai, Ahna L Hoff; Carpentier, Melissa Y; Gillaspy, Stephen; Cheek, Jeff; Page, Melanie

    2007-09-01

    To examine the relationship of parent-reported overprotection (OP), perceived child vulnerability (PCV), and parenting stress (PS) to youth-reported illness uncertainty, and to explore potential developmental differences. Eighty-two children and 82 adolescents (n = 164) diagnosed with Type 1 diabetes mellitus (DM1) or asthma, completed a measure of illness uncertainty, while their parents completed measures of OP, PCV, and PS. After controlling for demographic and illness parameters, both PCV and PS significantly predicted youth illness uncertainty in the combined sample. Within the child group, only PS significantly predicted illness uncertainty, whereas only PCV significantly predicted uncertainty for adolescents. Specific parenting variables are associated with youth-reported illness uncertainty; however, their relationship varies according to developmental level. Although OP has been identified as a predictor of child psychological outcomes in other studies, it does not appear to be associated with illness uncertainty in youth with DM1 or asthma.

  6. Effects of loneliness on illness perception in persons with a chronic disease.

    Science.gov (United States)

    Özkan Tuncay, Fatma; Fertelli, Tülay; Mollaoğlu, Mukadder

    2018-04-01

    To determine the effects of loneliness on illness perception in persons with a chronic disease. How an illness is perceived not only affects all dimensions of a person's life but also plays an important role in his/her coping with the complications and consequences of the disease. One of the factors that influence the illness perception is loneliness. The study is a descriptive study. The study sample included 206 individuals over the 18 years of age, conscious, having had a chronic illness at least 1 year, having no communication problems and agreeing to participate in the study after being informed about the study. Data were collected with the Personal Information Form, the Illness Perception Questionnaire and the University of California Los Angeles Loneliness Scale. The forms were administered to the participants in an unoccupied patient room, and the data were collected through face-to-face interviews. The results of the study revealed that individuals with a chronic disease perceived emotional symptoms accompanying the disease more intensely that they accepted their disease was a chronic one and that their personal control and treatment control of the disease were at a middle level. The mean score the participants obtained from the University of California Los Angeles Loneliness Scale was 38.49 ± 11.15. There was a significant negative correlation between this mean score and the mean scores obtained from the following subscales consequences, treatment control, illness perception and emotional representations. In this study, it was concluded that the participants perceived their loneliness level as moderate and that their illness perception was negatively affected as their loneliness levels increased. The knowledge of clinical nurses about perception of patients with chronic illnesses and conditions affecting that perception will enhance compliance with the illness management or treatment strategies. Clinical nurses should observe residents closely for

  7. School Experiences of Siblings of Children with Chronic Illness: A Systematic Literature Review.

    Science.gov (United States)

    Gan, Lucy L; Lum, Alistair; Wakefield, Claire E; Nandakumar, Beeshman; Fardell, Joanna E

    Siblings of children with chronic illness have unique experiences that can affect their school functioning, such that they may miss ongoing periods of school, experience difficulties with schoolwork or experience changes in their peer and teacher interactions. This review provides an overview of these siblings' school experiences. Six databases (Medline, PsychINFO, CINAHL, ERIC, Embase and The Cochrane Library) were systematically searched for studies examining the school experiences and peer relationships of siblings of children with chronic illness, as well as school-based interventions for these siblings. Studies were included if they were published in or after 2000 and were published in English. We identified 2137 articles upon initial search. From these, we identified 28 eligible studies examining the school experiences of >1470 siblings of children with chronic illness. Three key themes were identified throughout the reviewed articles. The literature described 1) the psychological impact on siblings at school; 2) decreases in school attendance and academic functioning, and; 3) changes or perceived differences in peer and teacher interactions. Siblings value teacher and peer support, and this support may contribute to better sibling school functioning. Many siblings are socially resilient, yet overlooked, members of the family who may present with psychological, academic and peer related difficulties at school following diagnosis of a brother or sister with chronic illness. Future research is needed to further delineate the sibling school experience to better facilitate the development of targeted sibling support interventions within the school environment. Copyright © 2016 Elsevier Inc. All rights reserved.

  8. Quality of life and illness perception in working and sick-listed chronic RSI patients

    NARCIS (Netherlands)

    Sluiter, Judith K.; Frings-Dresen, Monique H. W.

    2008-01-01

    OBJECTIVE: To study differences between working and sick-listed chronic repetitive strain injury (RSI) patients in the Netherlands with respect to indices of quality of life and illness perception. METHODS: In a cross-sectional design, one questionnaire was sent to all 3,250 members of the national

  9. Gamifying Self-Management of Chronic Illnesses: A Mixed-Methods Study.

    Science.gov (United States)

    AlMarshedi, Alaa; Wills, Gary; Ranchhod, Ashok

    2016-09-09

    Self-management of chronic illnesses is an ongoing issue in health care research. Gamification is a concept that arose in the field of computer science and has been borrowed by many other disciplines. It is perceived by many that gamification can improve the self-management experience of people with chronic illnesses. This paper discusses the validation of a framework (called The Wheel of Sukr) that was introduced to achieve this goal. This research aims to (1) discuss a gamification framework targeting the self-management of chronic illnesses and (2) validate the framework by diabetic patients, medical professionals, and game experts. A mixed-method approach was used to validate the framework. Expert interviews (N=8) were conducted in order to validate the themes of the framework. Additionally, diabetic participants completed a questionnaire (N=42) in order to measure their attitudes toward the themes of the framework. The results provide a validation of the framework. This indicates that gamification might improve the self-management of chronic illnesses, such as diabetes. Namely, the eight themes in the Wheel of Sukr (fun, esteem, socializing, self-management, self-representation, motivation, growth, sustainability) were perceived positively by 71% (30/42) of the participants with P value gamification in the self-management of diabetes.

  10. Gamifying Self-Management of Chronic Illnesses: A Mixed-Methods Study

    Science.gov (United States)

    Wills, Gary; Ranchhod, Ashok

    2016-01-01

    Background Self-management of chronic illnesses is an ongoing issue in health care research. Gamification is a concept that arose in the field of computer science and has been borrowed by many other disciplines. It is perceived by many that gamification can improve the self-management experience of people with chronic illnesses. This paper discusses the validation of a framework (called The Wheel of Sukr) that was introduced to achieve this goal. Objective This research aims to (1) discuss a gamification framework targeting the self-management of chronic illnesses and (2) validate the framework by diabetic patients, medical professionals, and game experts. Methods A mixed-method approach was used to validate the framework. Expert interviews (N=8) were conducted in order to validate the themes of the framework. Additionally, diabetic participants completed a questionnaire (N=42) in order to measure their attitudes toward the themes of the framework. Results The results provide a validation of the framework. This indicates that gamification might improve the self-management of chronic illnesses, such as diabetes. Namely, the eight themes in the Wheel of Sukr (fun, esteem, socializing, self-management, self-representation, motivation, growth, sustainability) were perceived positively by 71% (30/42) of the participants with P value gamification in the self-management of diabetes. PMID:27612632

  11. Educational Functioning of Children of Parents with Chronic Physical Illness: A Systematic Review

    Science.gov (United States)

    Chen, Cliff Yung-Chi

    2016-01-01

    A systematic review of the literature was performed to answer the question: What are the effects of parental chronic physical illness on children's educational functioning? Thirteen studies that met the inclusion criteria for the purpose of this review were identified, indicating the paucity of research on the topic. The results found that…

  12. A Multi-Modal Digital Game-Based Learning Environment for Hospitalized Children with Chronic Illnesses.

    Science.gov (United States)

    Chin, Jui-Chih; Tsuei, Mengping

    2014-01-01

    The aim of this study was to explore the digital game-based learning for children with chronic illnesses in the hospital settings. The design-based research and qualitative methods were applied. Three eight-year-old children with leukemia participated in this study. In the first phase, the multi-user game-based learning system was developed and…

  13. Home Care for Children with Chronic Illnesses and Severe Disabilities: A Bibliography and Resource Guide.

    Science.gov (United States)

    Wells, Alice; And Others

    The bibliography and resource guide summarizes relevant research and information on home care for children with disabilities and chronic illnesses, including those with such diagnoses as spina bifida, cerebral palsy, severe mental retardation, acquired immune deficiency syndrome (AIDS), hemophilia, sickle cell anemia, autism, or failure-to-thrive…

  14. Anxiety and depression in mothers and fathers of a chronically ill child

    NARCIS (Netherlands)

    van Oers, H. A.; Haverman, L.; Limperg, P. F.; van Dijk-Lokkart, E. M.; Maurice-Stam, H.; Grootenhuis, M. A.

    2014-01-01

    We aimed to determine the levels of anxiety and depression in mothers and fathers of a chronically ill child (0-18 years) and to study which parental and child variables are associated with anxiety and depression. In a cross-sectional design, anxiety and depression were assessed with the Hospital

  15. A Brief Cognitive Behavioural Therapy Psychoeducational Group for Chinese People with Chronic Illnesses: An Evaluation Study

    Science.gov (United States)

    Wong, Daniel F. K.; Ip, Priscilla S. Y.; Lee, Kim Man

    2017-01-01

    This pilot study attempted to examine the effectiveness of a brief cognitive behavioural therapy (CBT) psychoeducational group for Chinese people with chronic illness in Hong Kong. It adopted a single group design, and 52 participants joined the group. A questionnaire with three outcome measures, measuring general mental health, quality of life…

  16. Relation between perceived health and sick leave in employees with a chronic illness

    NARCIS (Netherlands)

    Boot, C.R.L.; Koppes, L.L.J.; Bossche, S.N.J. van den; Anema, J.R.; Beek, A.J. van der

    2011-01-01

    Introduction: To improve work participation in individuals with a chronic illness, insight into the role of work-related factors in the association between health and sick leave is needed. The aim of this study was to gain insight into the contribution of work limitations, work characteristics, and

  17. Psychosocial Adaptation to Chronic Illness and Disability: A Primer for Counselors

    Science.gov (United States)

    Livneh, Hanoch; Antonak, Richard F.

    2005-01-01

    In this article, the authors discuss 3 broad domains of psychosocial adaptation to chronic illness and disability. These include the dynamics (basic concepts, psychosocial responses, and coping strategies) typically associated with the process of adaptation to disabling conditions, assessment of adaptation as evidenced by 6 commonly used measures,…

  18. Introduction to Health Promotion for People with Chronic Illness and Disability

    Science.gov (United States)

    Chan, Fong; Chiu, Chung-Yi; Bezyak, Jill L.; Keegan, John

    2012-01-01

    Health promotion has received increasing attention in rehabilitation counseling research. Health promotion research contributes to theory building and provides the foundation for empirically supported interventions that can improve the health-related quality of life and employment outcomes of people with chronic illness and disability. In this…

  19. The association of depression and anxiety with medical symptom burden in patients with chronic medical illness.

    Science.gov (United States)

    Katon, Wayne; Lin, Elizabeth H B; Kroenke, Kurt

    2007-01-01

    Primary care patients with anxiety and depression often describe multiple physical symptoms, but no systematic review has studied the effect of anxiety and depressive comorbidity in patients with chronic medical illnesses. MEDLINE databases were searched from 1966 through 2006 using the combined search terms diabetes, coronary artery disease (CAD), congestive heart failure (CHF), asthma, COPD, osteoarthritis (OA), rheumatoid arthritis (RA), with depression, anxiety and symptoms. Cross-sectional and longitudinal studies with >100 patients were included as were all randomized controlled trials that measure the impact of improving anxiety and depressive symptoms on medical symptom outcomes. Thirty-one studies involving 16,922 patients met our inclusion criteria. Patients with chronic medical illness and comorbid depression or anxiety compared to those with chronic medical illness alone reported significantly higher numbers of medical symptoms when controlling for severity of medical disorder. Across the four categories of common medical disorders examined (diabetes, pulmonary disease, heart disease, arthritis), somatic symptoms were at least as strongly associated with depression and anxiety as were objective physiologic measures. Two treatment studies also showed that improvement in depression outcome was associated with decreased somatic symptoms without improvement in physiologic measures. Accurate diagnosis of comorbid depressive and anxiety disorders in patients with chronic medical illness is essential in understanding the cause and in optimizing the management of somatic symptom burden.

  20. Chronic Illness as a Source of Happiness: Paradox or perfectly normal?

    NARCIS (Netherlands)

    Hoppe, S.

    2013-01-01

    In this paper I analyse the relation between happiness and chronic illness from the perspective of medical anthropology and disability studies. By looking at the disability paradox I deconstruct society’s view of people with a disability. I argue that the disability paradox is problematic as it

  1. Chronic Physical Illness and Mental Health in Children. Results from a Large-Scale Population Study

    Science.gov (United States)

    Hysing, Mari; Elgen, Irene; Gillberg, Christopher; Lie, Stein Atle; Lundervold, Astri J.

    2007-01-01

    Background: The aim of the present study was to evaluate the sensitivity and specificity of the Strengths and Difficulties Questionnaire (SDQ) in detecting emotional and behavioural problems among children with chronic illness (CI). Methods: Parents and teachers of a population of primary school children in Norway (n = 9430) completed a…

  2. Personalized and contextualized information in self-management systems for chronically ill patients (PERISCOPE)

    NARCIS (Netherlands)

    Laverman, M.; Schonk, J.H.M.; Boog, P.J.M. van der; Neerincx, M.A.

    2010-01-01

    Motivation - It is becoming necessary to seriously consider self-management in the treatment of chronically ill patients. A number of self-management applications have already been developed, but an explicit theoretical model is lacking. The PERISCOPE-project aims to provide (1) a conceptual

  3. Psychiatric Illness in Mentally Retarded Adolescents: Clinical Features.

    Science.gov (United States)

    Masi, Gabriele

    1998-01-01

    Describes the clinical features of the most important psychiatric disorders in mentally retarded adolescents: mood disorders, psychotic disorders, severe behavioral disorders, personality disorders, anxiety disorders, and attention-deficit The impact of mental retardation on personality development is confirmed by the high psychopathological…

  4. Are We overestimating the prevalence of depression in chronic illness using questionnaires? Meta-analytic evidence in obstructive sleep apnoea

    DEFF Research Database (Denmark)

    Nanthakumar, Shenooka; Bucks, Romola S.; Skinner, Timothy C.

    2016-01-01

    Depression is common in chronic illness, albeit prevalence can be highly variable. This variability may be a function of symptom overlap between depression and chronic illness. Using Obstructive Sleep Apnoea (OSA) as an exemplar, this meta-analysis explored whether the proportion of overlapping s...

  5. Oxidative Stress and Mitochondrial Injury in Chronic Multisymptom Conditions: From Gulf War Illness to Autism Spectrum Disorder

    OpenAIRE

    Beatrice A. Golomb

    2012-01-01

    Background: Overlapping chronic multisymptom illnesses (CMI) include Chronic Fatigue Syndrome (CFS), fibromyalgia, irritable bowel syndrome, multiple chemical sensitivity, and Gulf War illness (GWI), and subsets of autism spectrum disorder (ASD). GWI entails a more circumscribed set of experiences that may provide insights of relevance to overlapping conditions.

  6. Childhood Illness and the Gender Gap in Adolescent Education in Low- and Middle-Income Countries.

    Science.gov (United States)

    Alsan, Marcella; Xing, Anlu; Wise, Paul; Darmstadt, Gary L; Bendavid, Eran

    2017-07-01

    Achieving gender equality in education is an important development goal. We tested the hypothesis that the gender gap in adolescent education is accentuated by illnesses among young children in the household. Using Demographic and Health Surveys on 41 821 households in 38 low- and middle-income countries, we used linear regression to estimate the difference in the probability adolescent girls and boys were in school, and how this gap responded to illness episodes among children gender gap in education, we assessed the relationship between the gender gap and national immunization coverage. In our sample of 120 708 adolescent boys and girls residing in 38 countries, girls were 5.08% less likely to attend school than boys in the absence of a recent illness among young children within the same household (95% confidence interval [CI], 5.50%-4.65%). This gap increased to 7.77% (95% CI, 8.24%-7.30%) and 8.53% (95% CI, 9.32%-7.74%) if the household reported 1 and 2 or more illness episodes, respectively. The gender gap in schooling in response to illness was larger in households with a working mother. Increases in child vaccination rates were associated with a closing of the gender gap in schooling (correlation coefficient = 0.34, P = .02). Illnesses among children strongly predict a widening of the gender gap in education. Investments in early childhood health may have important effects on schooling attainment for adolescent girls. Copyright © 2017 by the American Academy of Pediatrics.

  7. Disease-management partnership functioning, synergy and effectiveness in delivering chronic-illness care.

    Science.gov (United States)

    Cramm, Jane Murray; Nieboer, Anna Petra

    2012-06-01

    This study explored associations among disease-management partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. This study had a cross-sectional design. The study sample consists of 218 professionals (out of 393) participating in 22 disease-management partnerships in various regions of the Netherlands. We assessed the relationships among partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. Partnership functioning was assessed through leadership, resources, administration and efficiency. Synergy was considered the proximal outcome of partnership functioning, which, in turn, influenced the effectiveness of disease-management partnerships [measured with the Assessment of Chronic Illness Care (ACIC) survey instrument]. Overall ACIC scores ranged from 3 to 10, indicating basic/intermediate to optimal/comprehensive delivery of chronic-illness care. The results of the regression analysis demonstrate that partnership effectiveness was positively associated with leadership (β = 0.25; P≤ 0.01), and resources (β = 0.31; P≤ 0.001). No significant relationship was found between administration, efficiency and partnership effectiveness. Partnership synergy acted as a mediator for partnership functioning and was statistically significantly associated with partnership effectiveness (β = 0.25; P≤ 0.001). Disease-management partnerships seemed better able to deliver higher levels of chronic-illness care when synergy is created between partners. Synergy was more likely to emerge with boundary-spanning leaders who understood and appreciated partners' different perspectives, could bridge their diverse cultures and were comfortable sharing ideas, resources and power. In addition, the acknowledgement of and ability to use members' resources are valuable in engaging partners' involvement and achieving synergy in disease-management partnerships.

  8. Psychosocial well-being in young adults with chronic illness since childhood: the role of illness cognitions

    Science.gov (United States)

    2014-01-01

    Background More and more pediatric patients reach adulthood. Some of them are successfully integrating in adult life, but many others are not. Possibly Illness cognitions (IC) - the way people give meaning to their illness/disability – may play a role in individual differences on long-term adjustment. This study explored the association of IC with disease–characteristics and Health Related Quality of Life (HRQoL), anxiety and depression in young adults with a disability benefit due to childhood-onset chronic condition. Methods In a cross-sectional study, young adults (22–31 years, N = 377) who claimed a disability benefit because of a somatic condition since childhood, completed the Illness Cognition Questionnaire (acceptance-helplessness-benefits), RAND-36 (HRQoL) and HADS (anxiety and depression) online. Besides descriptive statistics, linear regression analyses were conducted to predict (1) illness cognitions by age, gender and disease-characteristics, and (2) HRQoL (Mental and Physical Component Scale), Anxiety and Depression by illness cognitions, controlling for disease-characteristics, age and gender. Results Respectively 90.2%, 83.8% and 53.3% of the young adults with a disability benefit experienced feelings of acceptance, benefits and helplessness. Several disease-characteristics were associated with IC. More acceptance and less helplessness were associated with better mental (β = 0.31; β = −0.32) and physical (β = 0.16; β = −0.15) HRQoL and with less anxiety (β = −0.27; β = 0.28) and depression (β = −0.29; β = 0.31). Conclusions IC of young adult beneficiaries were associated with their HRQoL and feelings of anxiety and depression. Early recognition of psychological distress and negative IC might be a key to the identification of pediatric patients at risk for long-term dysfunction. Identification of maladaptive illness cognitions enables the development of psychosocial interventions to optimise

  9. Emergency and disaster preparedness for chronically ill patients: a review of recommendations

    Directory of Open Access Journals (Sweden)

    Tomio J

    2014-12-01

    Full Text Available Jun Tomio,1 Hajime Sato2 1Department of Public Health, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan; 2Department of Health Policy and Technology Assessment, National Institute of Public Health, Wako, Japan Abstract: Recent disasters, especially those in developed countries, have highlighted the importance of disaster preparedness measures for chronic diseases. A number of surviving patients experienced the exacerbation of a chronic illness, such as hypertension, diabetes, cancer, and chronic respiratory diseases, due to disaster-related stress, interruption of care, or both; for some patients, these exacerbations resulted in death. Here, we review reports from recent disasters in developed countries and summarize the recommendations for disaster preparedness of chronically ill patients. A considerable number of recommendations based on the lessons learned from recent disasters have been developed, and they provide practical and essential steps to prevent treatment interruption during and after a disaster. To improve preparedness efforts, we suggest that health care providers should be aware of the following three suggestions: 1 recommendations should be evidence-based; 2 recommendations should contain consistent messages; and 3 recommendations should be feasible. Keywords: disaster, chronic illness, preparedness

  10. [Mental health of children, adolescents and young adults--part 2: burden of illness, deficits of the German health care system and efficacy and effectiveness of early intervention services].

    Science.gov (United States)

    Karow, A; Bock, T; Naber, D; Löwe, B; Schulte-Markwort, M; Schäfer, I; Gumz, A; Degkwitz, P; Schulte, B; König, H H; Konnopka, A; Bauer, M; Bechdolf, A; Correll, C; Juckel, G; Klosterkötter, J; Leopold, K; Pfennig, A; Lambert, M

    2013-11-01

    Numerous birth-control studies, epidemiological studies, and observational studies investigated mental health and health care in childhood, adolescence and early adulthood, including prevalence, age at onset, adversities, illness persistence, service use, treatment delay and course of illness. Moreover, the impact of the burden of illness, of deficits of present health care systems, and the efficacy and effectiveness of early intervention services on mental health were evaluated. According to these data, most mental disorders start during childhood, adolescence and early adulthood. Many children, adolescents and young adults are exposed to single or multiple adversities, which increase the risk for (early) manifestations of mental diseases as well as for their chronicity. Early-onset mental disorders often persist into adulthood. Service use of children, adolescents and young adults is low, even lower than in adult patients. Moreover, there is often a long delay between onset of illness and first adequate treatment with a variety of linked consequences for poorer psychosocial prognosis. This leads to a large burden of illness with respect to disability and costs. As a consequence several countries have implemented so-called "early intervention services" at the border of child and adolescent and adult psychiatry. Emerging studies show that these health care structures are effective and efficient. Part 2 of the present review focuses on illness burden including disability and costs, deficits of the present health care system in Germany, and efficacy and efficiency of early intervention services. © Georg Thieme Verlag KG Stuttgart · New York.

  11. Using zero-inflated models to explain chronic illness, pain, and complementary and alternative medicine use.

    Science.gov (United States)

    Ayers, Stephanie L; Kronenfeld, Jennie J

    2011-07-01

    To extend knowledge of complementary and alternative medicine (CAM) use by understanding how poor health influences both trying CAM and number of CAM types used. Using the 2002 National Health Interview Survey's Supplemental Section, zero-inflated models were employed to examine CAM use across 5 domains. Results indicate that level of pain is the only consistent predictor of both the likelihood of trying CAM and how many types of CAM are used. Pain increased the odds ratio and number of CAM types used across all domains. Findings, however, were mixed for health status and chronic conditions. Only prayer was associated with higher odds ratio (OR=1.705, PCAM types used for chronic illnesses (OR=1.024, PCAM use behaviors. Pain is the only consistent predictor of both trying CAM and the number of CAM types used. Chronic illness is only consistently influential for prayer.

  12. Adolescents with Functional Somatic Symptoms: The influence of family therapy on empowerment and illness beliefs

    DEFF Research Database (Denmark)

    Hulgaard, Ditte Roth; Rask, Charlotte; Dehlholm-Lambertsen, Birgitte

    psychological treatment and the significance of illness beliefs and empowerment in children and adolescents with severe FSS is scarce. Aims: To conduct a qualitative study which aims to examine how specific illness beliefs and a sense of empowerment evolve and change during specialized family-based treatment......Background: Young patients with Functional Somatic Symptoms (FSS) are common and may present in all clinical settings. Psychological treatment targeting dysfunctional illness beliefs and poor sense of empowerment has been shown effective for FSS in adults. In comparison current knowledge about...... (IPA). Results: Preliminary data from a pilotstudy with 2 families, from interviews conducted prior to family therapy, indicate that illness beliefs and sense of empowerment may be diverging for children and their parents, and are influenced by many factors, such as health professionals, family history...

  13. Does trust in health care influence the use of complementary and alternative medicine by chronically ill people?

    Directory of Open Access Journals (Sweden)

    Rijken PM

    2006-07-01

    Full Text Available Abstract Background People's trust in health care and health care professionals is essential for the effectiveness of health care, especially for chronically ill people, since chronic diseases are by definition (partly incurable. Therefore, it may be understandable that chronically ill people turn to complementary and alternative medicine (CAM, often in addition to regular care. Chronically ill people use CAM two to five times more often than non-chronically ill people. The trust of chronically ill people in health care and health care professionals and the relationship of this with CAM use have not been reported until now. In this study, we examine the influence of chronically ill people's trust in health care and health care professionals on CAM use. Methods The present sample comprises respondents of the 'Panel of Patients with Chronic Diseases' (PPCD. Patients (≥25 years were selected by GPs. A total of 1,625 chronically ill people were included. Trust and CAM use was measured by a written questionnaire. Statistical analyses were t tests for independent samples, Chi-square and one-way analysis of variance, and logistic regression analysis. Results Chronically ill people have a relatively low level of trust in future health care. They trust certified alternative practitioners less than regular health care professionals, and non-certified alternative practitioners less still. The less trust patients have in future health care, the more they will be inclined to use CAM, when controlling for socio-demographic and disease characteristics. Conclusion Trust in future health care is a significant predictor of CAM use. Chronically ill people's use of CAM may increase in the near future. Health policy makers should, therefore, be alert to the quality of practising alternative practitioners, for example by insisting on professional certification. Equally, good quality may increase people's trust in public health care.

  14. Attitudes toward mental illness in adults by mental illness-related factors and chronic disease status: 2007 and 2009 Behavioral Risk Factor Surveillance System.

    Science.gov (United States)

    Kobau, Rosemarie; Zack, Matthew M

    2013-11-01

    We examined how attitudes toward mental illness treatment and its course differ by serious psychological distress, mental illness treatment, chronic disease, and sociodemographic factors using representative state-based data. Using data from jurisdictions supporting the Behavioral Risk Factor Surveillance System's Mental Illness and Stigma Module (35 states, the District of Columbia, and Puerto Rico), we compared adjusted proportions of adults agreeing that "Treatment can help people with mental illness lead normal lives" (treatment effectiveness) and that "People are generally caring and sympathetic to people with mental illness" (supportive environment), by demographic characteristics, serious psychological distress, chronic disease status, and mental illness treatment. Attitudes regarding treatment effectiveness and a supportive environment for people with mental illness varied within and between groups. Most adults receiving mental illness treatment agreed that treatment is effective. Fewer adults with serious psychological distress than those without such distress agreed that treatment is effective. Fewer of those receiving treatment, those with psychological distress, and those with chronic disease perceived the environment as supportive. These data can be used to target interventions for population subgroups with less favorable attitudes and for surveillance.

  15. Illness perception, coping and adherence to treatment among patients with chronic kidney disease.

    Science.gov (United States)

    Vélez-Vélez, Esperanza; Bosch, Ricardo J

    2016-04-01

    To analyse the predictive value of illness representations on treatment adherence and coping strategies in a group of patients on haemodialysis. Understanding the cognitive and emotional factors that influence adherence behaviour and coping strategies and determining their relationship to sociodemographic factors remain a challenge; meeting this challenge would encourage comprehensive patient care, thereby improving their quality of life Cross-sectional study with predictive means in a sample of 135 patients on haemodialysis. Data collection occurred from September 2010-January 2012 and tools included the following: sociodemographic data, Illness Perception Questionnaire-Revised, the Cuestionario de Afrontamiento del Estrés and the Morisky-Green test to study adherence to treatment. Being a woman, having a greater knowledge of the disease and having a poorer sense of personal control affected adherence to treatment on controlling for each factor. 'Identity', 'personal control' and 'adherence' were associated with a proactive coping strategy, whereas 'evolution' and 'gender' were related independently to avoidance coping strategies; those who believed that their illness had a chronic course were more likely to cope by avoiding the problem and this tendency was stronger among women. This study provides evidence supporting the role of gender, knowledge about the disease and sense of personal control in adherence to therapeutic regimens of patients in chronic haemodialysis. The identification and characterization of patients' perception of chronic illness may represent a useful framework to influence disease outcomes such as adherence. © 2015 John Wiley & Sons Ltd.

  16. Effectiveness of an intervention for reducing social stigma towards mental illness in adolescents.

    Science.gov (United States)

    Vila-Badia, Regina; Martínez-Zambrano, Francisco; Arenas, Otilia; Casas-Anguera, Emma; García-Morales, Esther; Villellas, Raúl; Martín, José Ramón; Pérez-Franco, María Belén; Valduciel, Tamara; Casellas, Diana; García-Franco, Mar; Miguel, Jose; Balsera, Joaquim; Pascual, Gemma; Julia, Eugènia; Ochoa, Susana

    2016-06-22

    To evaluate the effectiveness of an intervention for reducing social stigma towards mental illness in adolescents. The effect of gender and knowledge of someone with mental illness was measured. Two hundred and eighty secondary school students were evaluated using the Community Attitudes towards Mental Illness (CAMI) questionnaire. The schools were randomized and some received the intervention and others acted as the control group. The programme consisted of providing information via a documentary film and of contact with healthcare staff in order to reduce the social stigma within the school environment. The intervention was effective in reducing the CAMI authoritarianism and social restrictiveness subscales. The intervention showed significant changes in girls in terms of authoritarianism and social restrictiveness, while boys only showed significant changes in authoritarianism. Following the intervention, a significant reduction was found in authoritarianism and social restrictiveness in those who knew someone with mental illness, and only in authoritarianism in those who did not know anyone with mental illness. The intervention was effective to reduce social stigma towards people with mental illness, especially in the area of authoritarianism. Some differences were found depending on gender and whether or not the subjects knew someone with mental illness.

  17. Chronic prostatitis/chronic pelvic pain syndrome in adolescents compared with that in young adults.

    Science.gov (United States)

    Lee, Keon-Cheol; Cho, In-Rae

    2017-07-01

    Chronic prostatitis (CP)/chronic pelvic pain syndrome (CPPS) has been studied mainly in adults; reports in adolescents are rare. We compared the clinical characteristics of adolescent CP/CPPS patients with those of young adults. We retrospectively analyzed 20 adolescents with CP/CPPS aged prostatitis symptoms index (NIH-CPSI) questionnaire, urinalysis, expressed prostatic secretion (EPS) or semen analysis, transrectal prostate ultrasonography, and prostate-specific antigen (PSA) were performed. Based on the EPS or semen analysis, patients were divided into category III-A or III-B. The mean age was 16.5±2.0 and 32.8±5.0 years in the adolescent and control groups, respectively. A sexual activity history was seen in 2 patients; 9 and 11 patients were in category III-A and III-B, respectively. The PSA was 0.65±0.39 and 1.22±0.48 ng/mL in the adolescent and control groups, respectively. The prostate size was 12.4±4.4 and 21.0±4.9 g in the adolescent and control groups, respectively. The NIH-CPSI scores in the adolescent group were 9.2±5.2, 5.5±3.5, 7.5±3.2, and 22.2±8.1 for pain, voiding, quality of life (QoL) domains, and total scores, respectively. The adolescent group showed a tendency to exhibit high voiding symptom scores. CPPS has an equally severe impact on QoL in adults and adolescents. Apart from high voiding symptom scores in adolescents, no difference was found in terms of urologic clinical parameters.

  18. Impact of adolescent social experiences on behavior and neural circuits implicated in mental illnesses.

    Science.gov (United States)

    Burke, Andrew R; McCormick, Cheryl M; Pellis, Sergio M; Lukkes, Jodi L

    2017-05-01

    Negative social experiences during adolescence are central features for several stress-related mental illnesses. Social play fighting behavior in rats peaks during early adolescence and is essential for the final maturation of brain and behavior. Manipulation of the rat adolescent social experience alters many neurobehavioral measurements implicated in anxiety, depression, and substance abuse. In this review, we will highlight the importance of social play and the use of three separate social stress models (isolation-rearing, social defeat, and social instability stress) to disrupt the acquisition of this adaptive behavior. Social stress during adolescence leads to the development of anxiety and depressive behavior as well as escalated drug use in adulthood. Furthermore, sex- and age-dependent effects on the hormonal stress response following adolescent social stress are also observed. Finally, manipulation of the social experience during adolescence alters stress-related neural circuits and monoaminergic systems. Overall, positive social experiences among age-matched conspecifics during rat adolescence are critical for healthy neurobehavioral maturation. Copyright © 2017 Elsevier Ltd. All rights reserved.

  19. Sarcopenia in cases of chronic and acute illness. A mini-review.

    Science.gov (United States)

    Dovjak, Peter

    2016-02-01

    Loss of muscle mass and muscle weakness are often found in cases of acute or chronic illness in elderly patients. Sarcopenia is a risk factor for complications and higher mortality. Based on an exact diagnosis and knowledge of the risk factors for developing sarcopenia, it is now possible to improve the prognosis by providing effective treatment options. This review was carried out based on a PubMed search in the period from 1998 to 2015 using original articles and reviews and posting the terms "sarcopenia", "elderly" and "acute illness". Given the evidence from the current literature, in the case of acute illness it is feasible to identify patients at risk, diagnose sarcopenia and prescribe a multidimensional treatment program to prevent or treat sarcopenia even in the bustling environment of geriatric wards or institutions.

  20. Nonemergency medical transportation and health care visits among chronically ill urban and rural medicaid beneficiaries.

    Science.gov (United States)

    Thomas, Leela V; Wedel, Kenneth R

    2014-01-01

    Inaccessibility to health care services due to lack of transportation affects the most vulnerable segments of the society. The effect of Medicaid-provided nonemergency medical transportation (NEMT) in Oklahoma on health care visits for the management of chronic illnesses is examined. Analyses of claims data show that African Americans are the highest users of NEMT. Medicaid beneficiaries who use NEMT services are significantly more likely to make the recommended number of annual visits for the management of chronic conditions than those who do not use NEMT. Increased use of NEMT by making the services more accommodating and convenient for beneficiaries is proposed.

  1. From Jollibee to BeeBee: "lifestyle" and chronic illness in Southeast Asia.

    Science.gov (United States)

    Manderson, Lenore; Naemiratch, Bhensri

    2010-07-01

    Throughout Southeast Asia, the number of people living with chronic conditions and degenerative disease has increased proportionately and absolutely. Public health interventions and effective medical treatment and surgeries have increased life expectancy. Concurrently, social and economic conditions have led to the rapid escalation of lifelong illnesses, characterized as "lifestyle" conditions. Drawing on ethnographic and survey research conducted in Southeast Asia, the authors illustrate the multiple factors contributing to people's health. Changes in food production; the organization, nature, and conditions of work; living conditions; and other factors affecting contemporary living increase vulnerability to noncommunicable diseases. These factors are largely beyond the control of most people. Efforts to reduce chronic illnesses predominantly focus on individual interventions, overlooking the lack of individual capacity to address the structural and institutional factors that compromise people's health.

  2. Prediction of chronic critical illness in a general intensive care unit

    Directory of Open Access Journals (Sweden)

    Sérgio H. Loss

    2013-06-01

    Full Text Available OBJECTIVE: To assess the incidence, costs, and mortality associated with chronic critical illness (CCI, and to identify clinical predictors of CCI in a general intensive care unit. METHODS: This was a prospective observational cohort study. All patients receiving supportive treatment for over 20 days were considered chronically critically ill and eligible for the study. After applying the exclusion criteria, 453 patients were analyzed. RESULTS: There was an 11% incidence of CCI. Total length of hospital stay, costs, and mortality were significantly higher among patients with CCI. Mechanical ventilation, sepsis, Glasgow score < 15, inadequate calorie intake, and higher body mass index were independent predictors for cci in the multivariate logistic regression model. CONCLUSIONS: CCI affects a distinctive population in intensive care units with higher mortality, costs, and prolonged hospitalization. Factors identifiable at the time of admission or during the first week in the intensive care unit can be used to predict CCI.

  3. No increased risk of developing depression in diabetes compared to other chronic illness

    DEFF Research Database (Denmark)

    Kessing, Lars Vedel; Nilsson, Flemming Mørkeberg; Siersma, Volkert

    2003-01-01

    of patients. There was no difference in the risk for Type 1 and Type 2 diabetes. It is concluded that older patients with diabetes do not seem to have an increased risk of developing severe depression compared with patients with other chronic illness.......Several studies have found that the prevalence of depression in patients with diabetes is higher than in the general population but it is unclear whether patients with diabetes have an increased risk of developing depression compared with patients with other chronic illnesses. In a nationwide case...... register study, all patients who had a discharge diagnosis of diabetes or of osteoarthritis at first admission in a period from 1977 to 1997 were identified. The probability of being readmitted and discharged with a diagnosis of depression was estimated with competing risks models in survival analysis...

  4. Changes in eating pathology and associated symptoms among chronically ill adults attending a brief psychoeducational group.

    Science.gov (United States)

    von Ranson, Kristin M; Stevenson, Andrea S; Cannon, Colleen K; Shah, Wendy

    2010-08-01

    Two quasi-experimental pilot studies examined eating pathology, eating self-efficacy, shame, guilt, and pride in adults with chronic illness before and after participating in brief cognitive-behavioral psychoeducational groups addressing eating concerns. In Study 1, 60 adults completed assessments before and after a series of two groups; in Study 2, 21 adults also completed an assessment five weeks prior to the first group to identify time-related changes in symptoms. Study 1 participants improved across domains, whereas Study 2 analyses also examining time-related changes showed improvements in eating self-efficacy, shame, guilt, and pride, but not in eating pathology. Psychoeducational groups may help improve symptoms including eating pathology, eating self-efficacy, shame, guilt, and pride among chronically-ill adults with eating concerns. 2009 Elsevier Ltd. All rights reserved.

  5. Psychometric Properties of the Self-Perception Profile for Children in Children with Chronic Illness.

    Science.gov (United States)

    Ferro, Mark A; Tang, Jennie

    2017-07-01

    The Self-Perception Profile for Children (SPPC) is a commonly used measure of self-concept in children, but little research has examined its psychometric properties in children newly-diagnosed with chronic illness. Confirmatory factor analysis and examination of reliability and convergent and discriminant validity of the SPPC was conducted in 31 children newly-diagnosed with asthma, diabetes, epilepsy, food allergy, or juvenile arthritis. The unidimensionality of each domain of the SPPC was confirmed, internal reliability was robust (α=.83-.95), and inter-domain polychoric correlations ranged from weak to strong (ρ=.05-.85) Convergent validity was demonstrated with measures of global self-concept and domains of quality of life. The Global Self-worth domain showed discriminant validity between children with and without comorbid mental disorder. Findings extend the psychometric properties of the SPPC as a valid and reliable scale in children newly-diagnosed with chronic illness.

  6. The characteristics of family functioning with mentally ill children and adolescents

    Directory of Open Access Journals (Sweden)

    Jelkić Milica

    2018-01-01

    Full Text Available Background/Aim. The family functioning and characteristics are the major risk factors in the genesis and persistence of mental disorders in children. The aim of this study was to evaluate the characteristics of functioning of family with mentally ill children and adolescents. Methods. This study explored 47 families with a child/adolescent suffering from mental disorders and 47 families of age matched healthy children/adolescents. The socio-demographic questionnaire, Social Adaptation Self-evaluation scale (SASS and Family Adaptability and Cohesion Evaluation Scale (FACES III (Olson, 1983 were completed by parents. Results. For all three FACES III dimensions multivariate analysis of variance (MANOVA showed significant differences between groups ( Wilks λ = .887; F = 3.839; df = 3; p = 0.012. Univariate analysis results showed significant differences for cohesiveness F = 6.99 p = 0.001 and adaptability F = 10.07 p = 0 .001. The analysis of the social adaption (SASS assessment showed that the mean score for clinical vs. non-clinical group was 39.66 ± 6.82 vs. 38.06 ± 8.44 without significant difference between groups (p = 0.32. The families of mentally ill children showed frequently lower socioeconomic status and education level, higher number of children per family, and broken home. Conclusion. The results suggested that cohesiveness and adaptability were significantly more prominent among families with mentaly ill children, but adaptation was similar to families with healthy children. It would be useful to evaluate adaptability, cohesiveness and adaptation of primary families when planning prevention and rehabillitation of mentally ill children and adolescent.

  7. Neuroinflammation and Behavior in HIV-1 Transgenic Rats Exposed to Chronic Adolescent Stress.

    Science.gov (United States)

    Rowson, Sydney A; Harrell, Constance S; Bekhbat, Mandakh; Gangavelli, Apoorva; Wu, Matthew J; Kelly, Sean D; Reddy, Renuka; Neigh, Gretchen N

    2016-01-01

    Highly active antiretroviral therapy (HAART) has improved prognosis for people living with HIV (PLWH) and dramatically reduced the incidence of AIDS. However, even when viral load is controlled, PLWH develop psychiatric and neurological disorders more frequently than those living without HIV. Adolescents with HIV are particularly susceptible to the development of psychiatric illnesses and neurocognitive impairments. While both psychiatric and neurocognitive disorders have been found to be exacerbated by stress, the extent to which chronic stress and HIV-1 viral proteins interact to impact behavior and relevant neuroinflammatory processes is unknown. Determination of the individual contributions of stress and HIV to neuropsychiatric disorders is heavily confounded in humans. In order to isolate the influence of HIV-1 proteins and chronic stress on behavior and neuroinflammation, we employed the HIV-1 transgenic (Tg) rat model, which expresses HIV-1 proteins with a gag and pol deletion, allowing for viral protein expression without viral replication. This Tg line has been characterized as a model of HAART-controlled HIV-1 infection due to the lack of viral replication but continued presence of HIV-1 proteins. We exposed male and female adolescent HIV-1 Tg rats to a mixed-modality chronic stress paradigm consisting of isolation, social defeat and restraint, and assessed behavior, cerebral vascularization, and neuroinflammatory endpoints. Stress, sex, and presence of the HIV-1 transgene impacted weight gain in adolescent rats. Female HIV-1 Tg rats showed decreases in central tendency during the light cycle in the open field regardless of stress exposure. Both male and female HIV-1 Tg rats exhibited decreased investigative behavior in the novel object recognition task, but no memory impairments. Adolescent stress had no effect on the tested behaviors. Microglia in female HIV-1 Tg rats exhibited a hyper-ramified structure, and gene expression of complement factor B was

  8. Pervasive Developmental Disorder Behavior in Adolescents with Intellectual Disability and Co-Occurring Somatic Chronic Diseases

    Science.gov (United States)

    Oeseburg, B.; Groothoff, J. W.; Dijkstra, G. J.; Reijneveld, S. A.; Jansen, D. E. M. C.

    2010-01-01

    Evidence on the association between somatic chronic diseases in ID-adolescents and the full range of pervasive developmental disorder behavior (PDD behavior) is scarce. The aim of the present study is to assess the association between somatic chronic diseases in ID-adolescents and mild PDD behavior. We obtained data on 1044 ID-adolescents, aged…

  9. Work right to right work: An automythology of chronic illness and work.

    Science.gov (United States)

    Vijayasingham, Lavanya

    2018-03-01

    Objectives Chronic illness is known to disrupt and redirect the usual course of work trajectories. This article aims to portray the longitudinal course of negotiating work after multiple sclerosis. Methods Using therapy and personal journals to reconstruct memories and experience, an autoethnography is produced and narrated within Campbell's "Hero's Journey" automythology framework. Results The narrative highlights the intrasubjectivity of illness meaning-the changing internal meaning-making and external behavior and decision-making dynamics. The journey of being inhibited to "Work Right", to "Looking for the Right" and ultimately, finding "Right Work" is charted; portrayed as a bittersweet maneuver to achieve work-illness equilibrium. Discussion This journey traverses a spectrum of negative coping-the exhibition of deviant work behaviors, disengagement and depression; to recalibration and renewal; culminating in living the "new normal", and finding moral and meaningful work engagements. Life trajectories with chronic illness are often skewed and redirected; but longitudinal narratives of normalization and coping also highlight the pursuits to secure and maintain a life of meaning and value.

  10. The Family Challenge of Caring for the Chronically Mentally Ill: A Phenomenological Study.

    Science.gov (United States)

    Shamsaei, Farshid; Cheraghi, Fatemeh; Esmaeilli, Ravanbakhsh

    2015-09-01

    Family caregiving for patients with chronic mental illness is influenced by various factors such as political, socioeconomic, and cultural contexts as well as related policies and health services. The purpose of this study was to explore the challenges with which the family caregivers of patients with chronic mental illness have to contend. The research design was qualitative with a phenomenological approach. The research population consisted of 16 long-term carers expressing interest in participating in the project. The carers were the family members of mentally ill relatives who collected their monthly medications at Farshchian Psychiatry Hospital in Hamadan in 2012. Purposive sampling was used to draw the sample. Data were collected by individual in-depth semi-structured interviews, which were tape-recorded and analyzed via Colaizzi's phenomenological method. Rigor was assessed regarding credibility, dependability, conformability, and transferability. Our findings highlighted 4 main themes, namely stress and emotional distress, need for education and information, socioeconomic effects and support, and physical strain. Families experience frustrations when providing support and care to their mentally ill relatives. They, therefore, need appropriate support and intervention by mental health services.

  11. Chronically ill patients’ expectations of therapeutic education and their health locus of control

    Directory of Open Access Journals (Sweden)

    Małgorzata Anna Basińska

    2015-12-01

    Full Text Available Background Beliefs as cognitive components of personality indicate what we consider as true or false and help us to answer questions concerning others, the world surrounding us and situations that we encounter. Beliefs about the health locus of control and their relations with expectations pertaining to therapeutic education seem to be of vital importance in the case of occurrence of a chronic illness. The aim of this paper is to verify whether expectations concerning therapeutic education in chronically ill patients demonstrate a relation with beliefs about the health locus of control and whether they vary according to gender, age and health, and to present the results of research that applies the Polish OE-15 scale for the evaluation of therapeutic education expectations depending on the health condition. Participants and procedure Two hundred and ninety-one persons were examined, including 180 patients and 111 healthy controls (the control group, 187 women and 104 men. The average age of subjects was 45.71 (SD = 13.51 years, ranging from 21 to 80 years. The OE-15 Therapeutic Education Expectations Scale and the Multidimensional Health Locus of Control Scale in versions relevant for patients and healthy controls as well as demographics were used. Results Age, gender and beliefs about the health locus of control are related to expectations of therapeutic education. Conclusions When providing therapeutic education for chronically ill patients, one should assess their expectations and pay attention to patients’ beliefs about the health locus of control.

  12. Facial emotion recognition in Chinese with schizophrenia at early and chronic stages of illness.

    Science.gov (United States)

    Leung, Joey Shuk-Yan; Lee, Tatia M C; Lee, Chi-Chiu

    2011-12-30

    Deficits in facial emotion recognition have been recognised in Chinese patients diagnosed with schizophrenia. This study examined the relationship between chronicity of illness and performance of facial emotion recognition in Chinese with schizophrenia. There were altogether four groups of subjects matched for age and gender composition. The first and second groups comprised medically stable outpatients with first-episode schizophrenia (n=50) and their healthy controls (n=26). The third and fourth groups were patients with chronic schizophrenic illness (n=51) and their controls (n=28). The ability to recognise the six prototypical facial emotions was examined using locally validated coloured photographs from the Japanese and Caucasian Facial Expressions of Emotion. Chinese patients with schizophrenia, in both the first-episode and chronic stages, performed significantly worse than their control counterparts on overall facial emotion recognition, (Pemotion did not appear to have worsened over the course of disease progression, suggesting that recognition of facial emotion is a rather stable trait of the illness. The emotion-specific deficit may have implications for understanding the social difficulties in schizophrenia. Copyright © 2011 Elsevier Ltd. All rights reserved.

  13. Anticipated stigma and quality of life among people living with chronic illnesses.

    Science.gov (United States)

    Earnshaw, Valerie A; Quinn, Diane M; Park, Crystal L

    2012-06-01

    We examined the process by which anticipated stigma relates to quality of life among people living with chronic illnesses. We hypothesized that stress, social support and patient satisfaction mediate the relationships between three sources of anticipated stigma and quality of life. Data were collected from adults living with chronic illnesses recruited from support groups and online communities, and were analysed with path analysis. Results demonstrated that stress mediated the relationships between anticipated stigma from friends and family, and work colleagues with quality of life; social support mediated the relationships between anticipated stigma from friends and family, and work colleagues with quality of life; and patient satisfaction mediated the relationship between anticipated stigma from healthcare providers with quality of life. The final path model fit the data well (χ (2) (8) = 8.66, p = 0.37; RMSEA = 0.02; CFI = 0.99; SRMR = 0.03), and accounted for 60% of the variance in participants' quality of life. This work highlights potential points of intervention to improve quality of life. It calls attention to the importance of differentiating between sources of anticipated stigma in clinical settings, interventions and research involving people living with chronic illnesses.

  14. Vitamin D deficiency and psychotic features in mentally ill adolescents: A cross-sectional study

    Directory of Open Access Journals (Sweden)

    Gracious Barbara L

    2012-05-01

    Full Text Available Abstract Background Vitamin D deficiency is a re-emerging epidemic, especially in minority populations. Vitamin D is crucial not only for bone health but for proper brain development and functioning. Low levels of vitamin D are associated with depression, seasonal affective disorder, and schizophrenia in adults, but little is known about vitamin D and mental health in the pediatric population. Methods One hundred four adolescents presenting for acute mental health treatment over a 16-month period were assessed for vitamin D status and the relationship of 25-OH vitamin D levels to severity of illness, defined by presence of psychotic features. Results Vitamin D deficiency (25-OH D levels Conclusions Vitamin D deficiency and insufficiency are both highly prevalent in adolescents with severe mental illness. The preliminary associations between vitamin D deficiency and presence of psychotic features warrant further investigation as to whether vitamin D deficiency is a mediator of illness severity, result of illness severity, or both. Higher prevalence of vitamin D deficiency but no greater risk of psychosis in African Americans, if confirmed, may have special implications for health disparity and treatment outcome research.

  15. Communal normalization in an online self-help group for adolescents with a mentally ill parent.

    Science.gov (United States)

    Trondsen, Marianne V; Tjora, Aksel

    2014-10-01

    Although implications of parental mental illness are well documented, most children of mentally ill parents are left to manage their family situation with limited information and support. We explored the role of a Norwegian online self-help group for adolescents (aged 15 to 18) with a mentally ill parent. Through in-depth interviews with 13 participants, we found that the online self-help group provided "communal normalization" by which participants, through communication in the forum, made sense of everyday experiences and emotions arising from having a mentally ill parent. We identified three main aspects of this process-recognizability, openness, and agency-all of which were important for the adolescents' efforts to obtain support, to be supportive, and to handle everyday life situations better. Communal normalization might provide resources for significantly improving the participants' life situations, and could demonstrate similar potential for users in other situations characterized by stigma, loneliness, silence, and health worries. © The Author(s) 2014.

  16. The articulation of neoliberalism: narratives of experience of chronic illness management in Bulgaria and the UK.

    Science.gov (United States)

    Vassilev, Ivaylo; Rogers, Anne; Todorova, Elka; Kennedy, Anne; Roukova, Poli

    2017-03-01

    The shift from social democratic to a neoliberal consensus in modern welfare capitalist states is characterised by an emphasis on individual responsibility, consumer choice, market rationality and growing social inequalities. There has been little exploration of how neoliberalism has shaped the environment within which chronic illness is experienced and managed. This article explores the different articulations of neoliberalism manifest in the arena of personal illness management in Bulgaria and the UK. People with type 2 diabetes discussed their experiences in terms of struggling with diet, diabetes as a personal failure, integrating illness management and valued activities, and the trustworthiness of the healthcare system. The UK narratives were framed within an individual responsibility discourse while in Bulgaria lack of resources dominated discussions, which were framed as structurally generated and unrelated to individual capabilities and choices. Respondents faced personal management challenges related to consumer and healthcare market failures in both countries. Differences in market regulation and emerging stakeholder and interest coalitions influenced users' expectations and their navigation and adaption to market failures in managing their everyday illnesses. The UK and Bulgarian articulations of neoliberalism can be described differently: the first as a logic of managed choice and the second as a logic of unmanaged consumerism. © 2016 Foundation for the Sociology of Health & Illness.

  17. The impact of illness-related shame on psychological health and social relationships: Testing a mediational model in students with chronic illness.

    Science.gov (United States)

    Trindade, Inês A; Duarte, Joana; Ferreira, Cláudia; Coutinho, Mariana; Pinto-Gouveia, José

    2018-01-26

    This study explores the impact of illness-related shame on the quality of social relationships and psychological health in chronic patients. We aimed to examine the roles of fear of receiving compassion from others and experiential avoidance as potential mediators of this relationship. Although some studies have demonstrated the negative impact of chronic illness-related shame on psychological functioning, the mechanisms that may underlie this link remain understudied. The sample was comprised by 115 college students, which had been diagnosed with at least 1 chronic illness. Participants completed self-report measures on an online platform. This study's design was cross-sectional. A path analysis was conducted using structural equation modelling. Results showed that the impact of illness-related shame on both psychological health (R 2  = .45) and the quality of social relationships (R 2  = .33) was fully accounted by fear of compassion from others and experiential avoidance. This model revealed an excellent fit. Fear of receiving compassion from others was the main mediator of the illness-related shame link with the quality of social relationships (β = -.22). The main mediator of the association between shame-related chronic illness and psychological health was experiential avoidance (β = -.21).This study shed light on possible psychological mechanisms linking feelings of shame associated with having a chronic condition and impaired social relationships and mental health. On one hand, resisting feelings of compassion and care from others and, on the other hand, avoiding difficult internal experiences and situations that might trigger them seem to underlie the impact of shame on psychological and social functioning in chronic patients. Copyright © 2018 John Wiley & Sons, Ltd.

  18. School Self-Concept in Adolescents With Chronic Pain.

    Science.gov (United States)

    Logan, Deirdre E; Gray, Laura S; Iversen, Christina N; Kim, Susan

    2017-09-01

    This study investigated school self-efficacy and sense of school membership (collectively "school self-concept") as potential influences on impaired school function among adolescents with chronic pain, including comparison of adolescents with primary pain to those with disease-based pain and pain-free peers. In all, 264 adolescents (12-17 years old) with primary pain conditions, juvenile idiopathic arthritis, or no pain completed measures of functional disability, school functioning, pain characteristics, and school self-concept, the Self-Efficacy Questionnaire for School Situations (SEQ-SS), and Psychological Sense of School Membership (PSSM). Both the SEQ-SS and PSSM demonstrated reliability and some validity, with the SEQ-SS more strongly supported. As a group, adolescents with primary pain conditions reported poorer school self-concept. School self-efficacy, but not school belongingness, predicted school functioning later in the school year. School self-concept, especially as assessed with the SEQ-SS, is relevant and important to assess when addressing school functioning in youth with chronic pain. © The Author 2017. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  19. [Social and organizational innovation to tackle the challenge of integrated care of the chronically ill].

    Science.gov (United States)

    Nuño-Solinís, Roberto

    2014-01-01

    The increase in life expectancy, coupled with other factors, has led to an increase in the prevalence of chronic diseases and multiple morbidity. This has led to the need to develop new health and social care models, which will allow managing these efficiently and in a sustainable manner. In particular, there seems to be consensus on the need to move towards integrated, patient-centered, and more proactive care. Thus, in recent years, chronic care models have been developed at international, national and regional level, as well as introducing strategies to tackle the challenge of chronic illness. However, the implementation of actions facilitating the change towards this new model of care does not seem to be an easy task. This paper presents some of the strategic lines and initiatives carried out by the Department of Health of the Basque Government. These actions can be described within a social and organizational innovation framework, as a means for effective implementation of interventions and strategies that shape the model required for the improved care of chronic illnesses within a universal and tax-funded health system. Copyright © 2013 Elsevier España, S.L. All rights reserved.

  20. Mind's response to the body's betrayal: Gestalt/Existential therapy for clients with chronic or life-threatening illnesses.

    Science.gov (United States)

    Imes, Suzanne A; Clance, Pauline Rose; Gailis, Andra T; Atkeson, Ellen

    2002-11-01

    In the literature on chronic or life-threatening illness, there is an overriding emphasis on clients' psychological coping styles and how they relate to psychological functioning. By contrast, in our approach, we look at the subjective mind/body experiences that clients have of their illness and how their lives are impacted by their illness. As psychotherapists, we address their existential distress, pain, body experience, thoughts, and feelings, as well as their efforts to cope or find meaning in their illness. We summarize Gestalt/Existential therapy for chronic illness, illustrate the approach with three case-vignettes, and stress the importance of attending to each client's unique responses to illness. Copyright 2002 Wiley Periodicals, Inc.

  1. Giving patients responsibility or fostering mutual response-ability: family physicians' constructions of effective chronic illness management.

    Science.gov (United States)

    Thille, Patricia H; Russell, Grant M

    2010-10-01

    Current visions of family medicine and models of chronic illness management integrate evidence-based medicine with collaborative, patient-centered care, despite critiques that these constructs conflict with each other. With this potential conflict in mind, we applied a critical discursive psychology methodology to present discursive patterns articulated by 13 family physicians in Ontario, Canada, regarding care of patients living with multiple chronic illnesses. Physicians constructed competing versions of the terms "effective chronic illness management" and "patient involvement." One construction integrated individual responsibility for health with primacy of "evidence," resulting in a conceptualization consistent with paternalistic care. The second constructed effective care as involving active partnership of physician and patient, implying a need to foster the ability of both practitioners and patients to respond to complex challenges as they arose. The former pattern is inconsistent with visions of family medicine and chronic illness management, whereas the latter embodies it.

  2. Determinants of levels and changes of physical functioning in chronically ill persons: results from the GLOBE Study

    OpenAIRE

    Mackenbach, J; Borsboom, G; Nusselder, W; Looman, C; Schrijvers, C

    2001-01-01

    STUDY OBJECTIVE—Declines in physical functioning are a common result of chronic illness, but relatively little is known about factors not directly related to severity of disease that influence the occurrence of disability among chronically ill persons. The aim of this study was to assess the effect of a large number of potential determinants (sociodemographic factors, health related behaviour, structural living conditions, and psychosocial factors).
DESIGN—Longitudinal study of levels and cha...

  3. Working as a doctor when chronically ill or disabled: comments made by doctors responding to UK surveys.

    Science.gov (United States)

    Smith, Fay; Goldacre, Michael J; Lambert, Trevor W

    2016-07-01

    To report a qualitative study of themes doctors raised spontaneously, in a large-scale prospective cohort study covering many aspects of their medical careers, when referring to their own chronic illness or disability. Questionnaire survey. UK. Questionnaires were sent one, five and 10 years after graduation to 44,539 doctors who qualified between 1993 and 2012 in the UK: 38,613 questionnaires were returned and 11,859 respondents provided comments made by doctors about their training or work. The comments of 123 doctors about their own chronic illness or disability. Main themes raised included poor support for doctors with chronic illness or disability, delays in and changes to careers (either planned ahead or imposed), the impact of pressure at work, difficulties returning to work after illness, limitations on career choices and inadequate careers advice for doctors with chronic illness or disabilities. More needs to be done to ensure that doctors with chronic illness or disability receive appropriate support. Occupational health guidance should be monitored closely, with more support for ill doctors including adjustments to the job, help if needed with morale and mental health, and advice on career options. Further studies should establish the prevalence of long-term health conditions among doctors.

  4. Providing healthcare for people with chronic illness: the views of Australian GPs.

    Science.gov (United States)

    Oldroyd, John; Proudfoot, Judith; Infante, Fernando A; Powell Davies, Gawaine; Bubner, Tanya; Holton, Chris; Beilby, Justin J; Harris, Mark F

    2003-07-07

    To explore general practitioners' views on chronic-disease care: the difficulties and rewards, the needs of patients, the impact of government incentive payments, and the changes needed to improve chronic-disease management. Qualitative study, involving semi-structured questions administered to 10 focus groups of GPs, conducted from April to October 2002. 54 GPs from both urban and rural practices in New South Wales and South Australia. Consistent themes emerged about the complex nature of chronic-disease management, the tension between patients' and GPs' goals for care, the time-consuming aspects of care (exacerbated by federal government requirements), and the conflicting pressures that prevent GPs engaging in structured multidisciplinary care (ie, team-based care involving systems for patient monitoring, recall, and care planning). Structured multidisciplinary care for people with chronic conditions can be difficult to provide. Barriers include the lack of fit between systems oriented towards acute care and the requirements of chronic-disease care, and between bureaucratic, inflexible structures and the complex, dynamic nature of GP-patient relationships. These problems are exacerbated by administrative pressures associated with federal government initiatives to improve chronic-illness management. Changes are needed in both policies and attitudes to enable GPs to move from episodic care to providing structured long-term care as part of a multidisciplinary team.

  5. Childhood- versus adolescent-onset antisocial youth with conduct disorder: psychiatric illness, neuropsychological and psychosocial function.

    Science.gov (United States)

    Johnson, Vicki A; Kemp, Andrew H; Heard, Robert; Lennings, Christopher J; Hickie, Ian B

    2015-01-01

    The present study investigates whether youths with childhood-onset antisocial behavior have higher rates of psychiatric illness, neuropsychological and psychosocial dysfunction than youths who engage in antisocial behavior for the first time in adolescence. Prior studies have generally focused on single domains of function in heterogeneous samples. The present study also examined the extent to which adolescent-onset antisocial behavior can be considered normative, an assumption of Moffitt's dual taxonomy model. Forty-three subjects (34 males, 9 females, mean age = 15.31, age range 12-21) with a diagnosis of conduct disorder (CD) were recruited through Headspace Services and the Juvenile Justice Community Centre. We compared childhood-onset antisocial youths (n = 23) with adolescent-onset antisocial youths (n = 20) with a conduct disorder, across a battery of psychiatric, neuropsychological and psychosocial measures. Neuropsychological function of both groups was also compared with normative scores from control samples. The childhood-onset group displayed deficits in verbal learning and memory, higher rates of psychosis, childhood maltreatment and more serious violent behavior, all effects associated with a large effect size. Both groups had impaired executive function, falling within the extremely low range (severely impaired). Childhood-onset CD displayed greater cognitive impairment, more psychiatric symptoms and committed more serious violent offences. The finding of severe executive impairment in both childhood- and adolescent-onset groupings challenges the assumption that adolescent-onset antisocial behavior is a normative process.

  6. Childhood- versus adolescent-onset antisocial youth with conduct disorder: psychiatric illness, neuropsychological and psychosocial function.

    Directory of Open Access Journals (Sweden)

    Vicki A Johnson

    Full Text Available The present study investigates whether youths with childhood-onset antisocial behavior have higher rates of psychiatric illness, neuropsychological and psychosocial dysfunction than youths who engage in antisocial behavior for the first time in adolescence. Prior studies have generally focused on single domains of function in heterogeneous samples. The present study also examined the extent to which adolescent-onset antisocial behavior can be considered normative, an assumption of Moffitt's dual taxonomy model.Forty-three subjects (34 males, 9 females, mean age = 15.31, age range 12-21 with a diagnosis of conduct disorder (CD were recruited through Headspace Services and the Juvenile Justice Community Centre. We compared childhood-onset antisocial youths (n = 23 with adolescent-onset antisocial youths (n = 20 with a conduct disorder, across a battery of psychiatric, neuropsychological and psychosocial measures. Neuropsychological function of both groups was also compared with normative scores from control samples.The childhood-onset group displayed deficits in verbal learning and memory, higher rates of psychosis, childhood maltreatment and more serious violent behavior, all effects associated with a large effect size. Both groups had impaired executive function, falling within the extremely low range (severely impaired.Childhood-onset CD displayed greater cognitive impairment, more psychiatric symptoms and committed more serious violent offences. The finding of severe executive impairment in both childhood- and adolescent-onset groupings challenges the assumption that adolescent-onset antisocial behavior is a normative process.

  7. The adolescent child health and illness profile. A population-based measure of health.

    Science.gov (United States)

    Starfield, B; Riley, A W; Green, B F; Ensminger, M E; Ryan, S A; Kelleher, K; Kim-Harris, S; Johnston, D; Vogel, K

    1995-05-01

    This study was designed to test the reliability and validity of an instrument to assess adolescent health status. Reliability and validity were examined by administration to adolescents (ages 11-17 years) in eight schools in two urban areas, one area in Appalachia, and one area in the rural South. Integrity of the domains and subdomains and construct validity were tested in all areas. Test/retest stability, criterion validity, and convergent and discriminant validity were tested in the two urban areas. Iterative testing has resulted in the final form of the CHIP-AE (Child Health and Illness Profile-Adolescent Edition) having 6 domains with 20 subdomains. The domains are Discomfort, Disorders, Satisfaction with Health, Achievement (of age-appropriate social roles), Risks, and Resilience. Tested aspects of reliability and validity have achieved acceptable levels for all retained subdomains. The CHIP-AE in its current form is suitable for assessing the health status of populations and subpopulations of adolescents. Evidence from test-retest stability analyses suggests that the CHIP-AE also can be used to assess changes occurring over time or in response to health services interventions targeted at groups of adolescents.

  8. Personality traits and illness representations as predictors of life satisfaction in hypertensive adolescents and emerging adults

    Directory of Open Access Journals (Sweden)

    Urška Žugelj

    2016-12-01

    Full Text Available This exploratory study examined the role of illness representations and personality in hypertensive adolescents’ and emerging adults’ life satisfaction. Even though earlier research showed that illness representations and personality traits predict life satisfaction in paediatric samples suffering from other chronic illnesses, these associations were not yet explored on youth with essential hypertension. The 97 participants were assessed for demographic and medical data, life satisfaction, illness representations (own illness representations – OIR, and perceived important others’ representations about participants’ illness – PIOIR, and personality (self-report and peer-report. Regression analyses indicated that OIR and self-reported personality traits accounted for 24% of the variance in general life satisfaction, 33% of variance in family-related life satisfaction, 25% of variance in friends-related life satisfaction, and 25% of variance in self-related life satisfaction. When entering PIOR illness representations and peer-assessed personality traits as predictors of life satisfaction domains, these predictors accounted for 29% of the variance in general life satisfaction, 23% of variance in family-related life satisfaction, 17% of variance in friends-related life satisfaction, 24% of the variance in the living environment-related life satisfaction, and 20% in self-related life satisfaction. More specifically, the personality traits of agreeableness (self-report, neuroticism (self-report and openness (peer report, as well as the illness representations dimensions (OIR: concern and emotional burden; PIOIR: identity, comprehension, consequences and treatment control of PIOIR, were shown to be the most important predictors of different domains of life satisfaction.

  9. Childhood abuse and neglect among women outpatients with chronic mental illness.

    Science.gov (United States)

    Muenzenmaier, K; Meyer, I; Struening, E; Ferber, J

    1993-07-01

    The purposes of the study were to determine the prevalence of childhood sexual abuse, physical abuse, and neglect among women outpatients with severe and persistent mental illness; to examine patterns of co-occurrence of the various types of abuse; and to explore the relationships between childhood abuse and adult psychiatric symptomatology. Childhood histories of abuse and data on clinical characteristics of 78 women enrolled in a New York State outpatient clinic were elicited in face-to-face interviews using a structured questionnaire. Sixty-five percent of the women reported histories of some type of abuse or neglect during childhood. Forty-five percent of the sample had been sexually abused, 51 percent had been physically abused, and 22 percent had experienced neglect. Seventy-four percent of the sexually abused women, 70 percent of the physically abused women, and 94 percent of the women who experienced neglect reported at least one additional form of abuse or neglect. Respondents who had been abused in childhood had higher levels of depressive and psychotic symptoms and higher rates of sexual victimization in adulthood than those who had not been abused. Women who experienced neglect as children had higher rates of homelessness in adulthood. Chronic mentally ill women seem to experience higher rates of abuse and more types of abuse than the general population. Clinicians should try to determine whether chronic mentally ill women have histories of abuse and to develop interventions to meet their special needs.

  10. Acute and long-term survival in chronically critically ill surgical patients: a retrospective observational study.

    Science.gov (United States)

    Hartl, Wolfgang H; Wolf, Hilde; Schneider, Christian P; Küchenhoff, Helmut; Jauch, Karl-Walter

    2007-01-01

    Various cohort studies have shown that acute (short-term) mortality rates in unselected critically ill patients may have improved during the past 15 years. Whether these benefits also affect acute and long-term prognosis in chronically critically ill patients is unclear, as are determinants relevant to prognosis. We conducted a retrospective analysis of data collected from March 1993 to February 2005. A cohort of 390 consecutive surgical patients requiring intensive care therapy for more than 28 days was analyzed. The intensive care unit (ICU) survival rate was 53.6%. Survival rates at one, three and five years were 61.8%, 44.7% and 37.0% among ICU survivors. After adjustment for relevant covariates, acute and long-term survival rates did not differ significantly between 1993 to 1999 and 1999 to 2005 intervals. Acute prognosis was determined by disease severity during ICU stay and by primary diagnosis. However, only the latter was independently associated with long-term prognosis. Advanced age was an independent prognostic determinant of poor short-term and long-term survival. Acute and long-term prognosis in chronically critically ill surgical patients has remained unchanged throughout the past 12 years. After successful surgical intervention and intensive care, long-term outcome is reasonably good and is mainly determined by age and underlying disease.

  11. Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time.

    Science.gov (United States)

    Nimmon, Laura; Bates, Joanna; Kimel, Gil; Lingard, Lorelei

    2018-01-01

    Informal caregivers play a vital role in supporting patients with heart failure (HF). However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care. From a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient-partner couples (26 participants). The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness. The analysis highlighted the profound enmeshment of the couples. The couples' interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other's changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state. We conclude that the salience of this couple group's oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care.

  12. Personal prayer in patients dealing with chronic illness: a review of the research literature.

    Science.gov (United States)

    Jors, Karin; Büssing, Arndt; Hvidt, Niels Christian; Baumann, Klaus

    2015-01-01

    Background. Prayer is commonly used among patients for health purposes. Therefore, this review focused on three main questions: (1) why do people turn to prayer in times of illness?, (2) what are the main topics of their prayers?, and (3) how do they pray? Method. We undertook a systematic review of the literature by searching the databases PubMed, Medline, and PsycINFO. The following inclusion criteria were used: (1) participants in the study were patients dealing with an illness, (2) the study examined the use of private rather than intercessory prayer, and (3) the content and purpose of prayer rather than its effects were investigated. Results. 16 articles were included in the final review. Participants suffered from a variety of chronic diseases, mostly cancer. Five main categories for the reasons and topics of prayer were found: (1) disease-centered prayer, (2) assurance-centered prayer, (3) God-centered prayer, (4) others-centered prayer, and (5) lamentations. Among these, disease-centered prayer was most common. Conclusions. Although most patients with chronic diseases do pray for relief from their physical and mental suffering, the intention of their prayers is not only for healing. Rather, prayer can be a resource that allows patients to positively transform the experience of their illness.

  13. Personal Prayer in Patients Dealing with Chronic Illness: A Review of the Research Literature

    Directory of Open Access Journals (Sweden)

    Karin Jors

    2015-01-01

    Full Text Available Background. Prayer is commonly used among patients for health purposes. Therefore, this review focused on three main questions: (1 why do people turn to prayer in times of illness?, (2 what are the main topics of their prayers?, and (3 how do they pray? Method. We undertook a systematic review of the literature by searching the databases PubMed, Medline, and PsycINFO. The following inclusion criteria were used: (1 participants in the study were patients dealing with an illness, (2 the study examined the use of private rather than intercessory prayer, and (3 the content and purpose of prayer rather than its effects were investigated. Results. 16 articles were included in the final review. Participants suffered from a variety of chronic diseases, mostly cancer. Five main categories for the reasons and topics of prayer were found: (1 disease-centered prayer, (2 assurance-centered prayer, (3 God-centered prayer, (4 others-centered prayer, and (5 lamentations. Among these, disease-centered prayer was most common. Conclusions. Although most patients with chronic diseases do pray for relief from their physical and mental suffering, the intention of their prayers is not only for healing. Rather, prayer can be a resource that allows patients to positively transform the experience of their illness.

  14. Living with Difference: Exploring the Social Self of Adolescents with Chronic Pain

    Directory of Open Access Journals (Sweden)

    Paula A Forgeron

    2013-01-01

    Full Text Available BACKGROUND: Chronic pain negatively affects an adolescent’s life; however, little is known about the social impact of chronic pain for adolescents. More is known about the general peer relationships of adolescents with chronic pain than their close friendships. Close friendships begin to take on more importance during adolescence as these relationships facilitate the development of an adolescent’s sense of personal identity and increasing independence from family influences. Thus, chronic pain may create friendship challenges for adolescents beyond those typically experienced during this developmental trajectory, which may negatively impact their abilities to secure social support.

  15. The stigma of mental illness in children and adolescents: A systematic review.

    Science.gov (United States)

    Kaushik, Anya; Kostaki, Evgenia; Kyriakopoulos, Marinos

    2016-09-30

    One in ten children and adolescents suffer with mental health difficulties at any given time, yet less than one third seek treatment. Untreated mental illness predisposes to longstanding individual difficulties and presents a great public health burden. Large scale initiatives to reduce stigmatization of mental illness, identified as a key deterrent to treatment, have been disappointing. This indicates the need for a clearer understanding of the stigmatizing processes faced by young people, so that more effective interventions are employed. A systematic review of the literature, assessing public stigma and self-stigma (i.e. internalized public stigma) specifically in children and adolescents with mental health difficulties (YP-MHD), was conducted. Forty-two studies were identified, confirming that stigmatization of YP-MHD is a universal and disabling problem, present amongst both children and adults. There was some variation by diagnosis and gender, and stigmatization was for the most part unaffected by labelling. Self-stigmatization led to more secrecy and an avoidance of interventions. The findings confirm that stigmatization of mental illness is poorly understood due to a lack of research and methodological discrepancies between existing studies. Implications for the findings are discussed, and suggestions made for future research. Copyright © 2016. Published by Elsevier Ireland Ltd.

  16. Patient Engagement in Randomized Controlled Tai Chi Clinical Trials among the Chronically Ill.

    Science.gov (United States)

    Jiang, Dongsheng; Kong, Weihong; Jiang, Joanna J

    2017-01-01

    Physicians encounter various symptom-based complaints each day. While physicians strive to support patients with chronic illnesses, evidence indicates that patients who are actively involved in their health care have better health outcomes and sometimes lowers costs. This article is to analyze how patient engagement is described when complex interventions such as Tai Chi were delivered in Randomized Controlled clinical Trials (RCTs). It reviews the dynamic patient- physician relationship in chronic illness management and to illustrate the patient engagement process, using Tai Chi as an example intervention. RCTs are considered the gold standard in clinical research. This study is a qualitative analysis of RCTs using Tai Chi as an intervention. A systematic literature search was performed to identify quality randomized controlled clinical trials that investigated the effects of Tai Chi. Selected clinical trials were classified according to research design, intervention style, patient engagement, and outcomes. Patient engagement was classified based on levels of patient participation, compliance, and selfmanagement. The chronic health conditions included in this paper are Parkinson's disease, polyneuropathy, hypertension, stroke, chronic insomnia, chronic heart failure, fibromyalgia, osteoarthritis, central obesity, depression, deconditioning in the elderly, or being pre-clinically disabled. We found that patient engagement, as a concept, was not well defined in literature. It covers a wide range of related terms, such as patient involvement, participation, shared decision- making, patient activation, adherence, compliance, and self-management. Tai Chi, as a very complex practice system, is to balance all aspects of a patient's life; however, the level of patient engagement is difficult to describe using conventional clinical trial design. To accurately illustrate the effect of a complex intervention, novel research design must explore ways to measure patient

  17. [Is vocational integration in the competitive labor market a realistic goal for the chronically mentally ill?].

    Science.gov (United States)

    Hoffmann, H

    1999-09-01

    A wide range of sheltered jobs has been created in the second or special labour market with the aim of enabling the chronically mentally ill to participate in working life. However, having a job in the special labour market often precludes the chance of obtain-ing employment in the competitive labour market. To date, vocational integration programs enable only a small number of persons with psychiatric disabilities to attain reintegration into competitive employment. The predictors of successful vocational integration are subsequently discussed. A substantial increase in both sheltered and competitive jobs on the common labour market could be achieved for mentally ill and disabled people by adapting the "supported employment" model, as widely practised in the USA, to European labour market standards and appropriately funding its implementation. The utilisation of this model could serve to reduce the necessity of further expansion in the special labour market.

  18. A conceptual model of independence and dependence for adults with chronic physical illness and disability.

    Science.gov (United States)

    Gignac, M A; Cott, C

    1998-09-01

    This paper presents a conceptual model of physical independence and dependence as it relates to adult onset, chronic physical illness and disability. Physical independence and dependence are presented as two separate, continuous, and multiply determined constructs, and illustrations are provided of situations where people can be independent, dependent, not independent, or experience imposed dependence. The paper also discusses potential determinants of physical independence and dependence, including different domains of disability, the role of subjective perceptions, demographics, the physical and social/political environments, personal resources, attitudes and coping resources, illness and efficacy appraisals, and the nature of the assistive relationship. The paper extends work on physical independence and dependence by synthesizing the findings from previous studies and incorporating the findings from other relevant areas of research into the area. It also expands on the concepts of physical independence and dependence, as well as their determinants, and relates independence and dependence to other outcomes of interest such as service delivery.

  19. [Management of chronic daily headache in children and adolescents].

    Science.gov (United States)

    Cuvellier, J-C

    2009-01-01

    Chronic daily headache (CDH) affects 2 to 4% of adolescent females and 0,8 to 2% of adolescent males. CDH is diagnosed when headaches occur more than 4 hours a day, for greater than or equal to 15 headache days per month, over a period of 3 consecutive months, without an underlying pathology. It is manifested by severe intermittent headaches, that are migraine-like, as well as a chronic baseline headache. Silberstein and Lipton divided patients into four diagnostic categories: transformed migraine, chronic tension-type headache, new daily-persistent headache, and hemicrania continua. The second edition of the International Classification of Headache Disorders did not comprise any CDH category as such, but provided criteria for all four types of CDH: chronic migraine, chronic tension-type headache, new daily-persistent headache, and hemicrania continua. Evaluation of CDH needs to include a complete history and physical examination to identify any possibility of the headache representing secondary headaches. Children and adolescents with CDH frequently have sleep disturbance, pain at other sites, dizziness, medication-overuse headache and a psychiatric comorbidity (anxiety and mood disorders). CDH frequently results in school absence. CDH management plan is dictated by CDH subtype, the presence or absence of medication overuse, functional disability and presence of attacks of full-migraine superimposed. Reassuring, explaining, and educating the patient and family, starting prophylactic therapy and limiting aborting medications are the mainstay of treatment. It includes pharmacologic (acute and prophylactic therapy) and nonpharmacologic measures (biobehavioral management, biofeedback-assisted relaxation therapy, and psychologic or psychiatric intervention). Part of the teaching process must incorporate life-style changes, such as regulation of sleep and eating habits, regular exercise, avoidance of identified triggering factors and stress management. Emphasis must be

  20. Patient-perceived self-management tasks and support needs of people with chronic illness: generic or disease specific?

    NARCIS (Netherlands)

    Houtum, L. van; Rijken, M.; Heijmans, M.; Groenewegen, P.

    2015-01-01

    Background: Self-management is widely accepted as an essential component of chronic care. Nevertheless, little is known about patients’ perceptions of self-management. Purpose: This study aims to explore which self-management tasks and support needs people with chronic illness perceive for

  1. Illness appraisals and health-related quality of life in adolescents and young adults with allergies and asthma.

    Science.gov (United States)

    Hullmann, Stephanie E; Eddington, Angelica R; Molzon, Elizabeth S; Mullins, Larry L

    2013-01-01

    The current study sought to: 1) assess differences in levels of physical and mental health-related quality of life (HRQOL), illness uncertainty, and intrusiveness in adolescents and young adults (AYAs) with allergies and asthma, as well as 2) examine the effect of illness appraisals on HRQOL. Participants were undergraduate students with self-reported allergies (n=74) and asthma (n=74) who completed the Mishel Uncertainty in Illness Scale (MUIS), the Illness Intrusiveness Scale (IIS), and the SF-36 Health Survey Questionnaire. Paired t-tests indicated that AYAs with allergies reported higher levels of illness uncertainty and poorer mental HRQOL than AYAs with asthma; the groups did not differ on reported levels of illness intrusiveness or physical HRQOL. Hierarchical regressions were conducted to examine the relationship between illness appraisals and HRQOL. Results revealed that poorer mental HRQOL was associated with higher illness uncertainty in AYAs with allergies and higher illness intrusiveness in AYAs with asthma. Poorer physical HRQOL was associated with higher illness uncertainty in AYAs with asthma and higher illness intrusiveness in AYAs with allergies and asthma. The current examination suggests that illness appraisals may be differentially related to HRQOL in AYAs with allergies compared to those with asthma.

  2. Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time

    Directory of Open Access Journals (Sweden)

    Nimmon L

    2018-03-01

    Full Text Available Laura Nimmon,1,2 Joanna Bates,1,3 Gil Kimel,4,5 Lorelei Lingard6 On behalf of the Heart Failure/Palliative Care Teamwork Research Group 1Centre for Health Education Scholarship, 2Department of Occupational Science and Occupational Therapy, 3Department of Family Practice, Faculty of Medicine, University of British Columbia, 4Palliative Care Program, St Paul’s Hospital, 5Department of Medicine, Division of Internal Medicine, University of British Columbia, Vancouver, BC, 6Centre for Education Research and Innovation, Department of Medicine, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada Background: Informal caregivers play a vital role in supporting patients with heart failure (HF. However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care. Materials and methods: From a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient–partner couples (26 participants. The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness. Results: The analysis highlighted the profound enmeshment of the couples. The couples’ interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other’s changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state. Conclusion: We conclude that the salience of this couple group’s oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care. Keywords

  3. Metabolic Control and Illness Perceptions in Adolescents with Type 1 Diabetes

    Directory of Open Access Journals (Sweden)

    Line Wisting

    2016-01-01

    Full Text Available Background. Disturbed eating behavior and psychosocial variables have been found to influence metabolic control, but little is known about how these variables interact or how they influence metabolic control, separately and combined. Objective. To explore associations between metabolic control (measured by HbA1c and eating disorder psychopathology, coping strategies, illness perceptions, and insulin beliefs in adolescents with type 1 diabetes. Methods. A total of 105 patients (41.9% males with type 1 diabetes (12–20 years were interviewed with the Child Eating Disorder Examination. In addition, self-report psychosocial questionnaires were completed. Clinical data, including HbA1c, was obtained from the Norwegian Childhood Diabetes Registry. Results. Significant gender differences were demonstrated. Among females, HbA1c correlated significantly with eating restriction (.29, p < .05, the illness perception dimensions consequences, personal control, coherence, and concern (ranging from .33 to .48, and the coping strategy ventilating negative feelings (−.26, p < .05. Illness perception personal control contributed significantly to HbA1c in a regression model, explaining 23% of the variance among females (β .48, p < .001. None of the variables were significantly associated with HbA1c among males. Conclusions. Illness perceptions appear to be important contributors to metabolic control in females, but not males, with type 1 diabetes.

  4. Hope and fatigue in chronic illness: The role of perceived stress.

    Science.gov (United States)

    Hirsch, Jameson K; Sirois, Fuschia M

    2016-04-01

    Fatigue is a debilitating symptom of chronic illness that is deleteriously affected by perceived stress, a process particularly relevant to inflammatory disease. Hopefulness, a goal-based motivational construct, may beneficially influence stress and fatigue, yet little research has examined these associations. We assessed the relation between hope and fatigue, and the mediating effect of stress, in individuals with fibromyalgia, arthritis, and inflammatory bowel disease. Covarying age, sex, and pain, stress partially mediated the association between hope and fatigue; those with greater hope reported less stress and consequent fatigue. Therapeutically, bolstering hope may allow proactive management of stressors, resulting in less fatigue. © The Author(s) 2014.

  5. An Infusion Model for Including Content on Elders with Chronic Illness in the Curriculum

    Directory of Open Access Journals (Sweden)

    Sherry M. Cummings

    2000-05-01

    Full Text Available Older people with chronic mental illness (CMI are experiencing longer life expectancies that parallel those of the general population. Due to their experience of having CMI, these older adults present unique issues that affect service delivery and care provision. Content on this population is often omitted in the curriculum, which leaves students unprepared to practice with these clients. This article proposes an infusion model that can be used in baccalaureate or graduate foundation courses to increase exposure to elders with CMI.

  6. Peer victimization and subjective health among students reporting disability or chronic illness in 11 Western countries

    DEFF Research Database (Denmark)

    Sentenac, Mariane; Gavin, Aoife; Nic Gabhainn, Saoirse

    2013-01-01

    BACKGROUND: To compare the strength of the association between peer victimization at school and subjective health according to the disability or chronic illness (D/CI) status of students across countries. METHODS: This study used data from 55 030 students aged 11, 13 and 15 years from 11 countries...... reporting D/CI were more likely to report being victims of bullying. Victims of bullying reported more negative subjective health outcomes regardless of their D/CI status. Although inclusive education is currently a major topic of educational policies in most countries, additional efforts should be made...

  7. Investigating the relationships between chronic ill health and educational outcomes in children

    Directory of Open Access Journals (Sweden)

    Michael Fleming

    2017-04-01

    Compared to peers, children who had ADHD or depression were most adversely affected experiencing poorer educational outcomes in all five of the educational domains investigated. Children with epilepsy experienced poorer outcomes across four domains. Children with diabetes and asthma experienced more absence and increased SEN and asthmatic children experienced poorer attainment. Children who have these chronic illnesses at school appear to be at an educational disadvantage therefore further understanding of the intricate relationships between health and education is an on-going important area of public health.

  8. Shamanism: Indications and Use by Older Hmong Americans with Chronic Illness

    Directory of Open Access Journals (Sweden)

    Linda A. Gerdner

    2012-01-01

    Full Text Available This article reports qualitative interviews from an ethnographic study that explored in part, the health seeking behaviors of and for older Hmong Americans with chronic illness. The study occurred over a 36-month period in the St. Paul / Minneapolis area of Minnesota. The majority of interviews were conducted in the Hmong language and lasted approximately three hours. Participants included 35 older Hmong Americans living independently with chronic illness. Themajority of these older adults were female (n=25, 80% with a mean age of 78.43 years. Interviews also included 33 family members (n=25 female,75.75% with a mean age of 75.75 years, who provided a minimum of eight hours of in-home care for an older Hmong American with chronic illness. Due to the significant role of shamans in the spiritual well-being of older adults, three shamans (two male, and one female were also interviewed. All (mean age 83, range65-99 had been “chosen” to become a shaman while living in Laos and had resided in the United States an average of 4 years 5 months (range: 1 month to 13 years. All shamans reported havingan active practice, with comments such as “I have so many [patients] I do not count.” More specifically, one shaman stated that he performed 20 to 40 healing ceremonies per year. One shaman explained his role by stating “I heal the weak and the lost spirit.” The majority of older Hmong Americans (74.29% and family caregivers (57.58 had retained the spiritual beliefs of animism and ancestor worship. Findings report that 18 (51.43% older Hmong Americanscompared to 21 (63.3% family caregivers sought the services of both a physician and a shaman for treatment of the older person’s chronic illness. Fourteen (40% older Hmong Americans compared to ten (30.30% family caregivers sought the services of a physician alone. Only 3 (8.57% older Hmong Americans compared to 2 (6.06% caregivers consulted the services of a shaman alone. Many older adults and

  9. Adolescent mothers of critically ill newborns: addressing the rights of parent and child.

    Science.gov (United States)

    Mercurio, Mark R

    2011-08-01

    Despite recent declines, the teen birth rate in the United States remains markedly higher than in other developed countries. Infants born to teen mothers are more likely to be preterm than those born to adult mothers and thus more likely to end up in the newborn intensive care unit (NICU). Critically ill newborns are not infrequently born to teen mothers, including those in early adolescence. The focus of this chapter is the mechanism of decision-making on behalf of those newborns and the role of the early adolescent mother as surrogate decision-maker. It is argued that the current standard in many US hospitals, and likely elsewhere, is suboptimal and inadequately addresses the rights and needs of both mother and newborn.

  10. Applying a coping with stress questionnaire for cancer patients to patients with non-cancer chronic illnesses.

    Science.gov (United States)

    Orive, Miren; Quintana, Jose M; Vrotsou, Kalliopi; Las Hayas, Carlota; Bilbao, Amaia; Barrio, Irantzu; Matellanes, Begoña; Padierna, Jesús A

    2013-06-01

    One of the few instruments to evaluate coping skills among patients with chronic illnesses is the Cuestionario de Afrontamiento al Estrés para Pacientes Oncológicos (CAEPO), created initially for cancer patients. We evaluate how well CAEPO applies to patients with non-cancer chronic illnesses. A total of 344 patients (115 with chronic hepatitis C, 120 with inflammatory bowel disease and 109 with recurrent vertigo) completed the CAEPO. Exploratory factor analysis and Cronbach's alpha provide only partial support for the seven factors suggested by the original CAEPO. A streamlined version with fewer dimensions and items may be a better solution for identifying coping strategies among these patients.

  11. Patient-provider communication over social media: perspectives of adolescents with psychiatric illness.

    Science.gov (United States)

    van Rensburg, Samuel H; Klingensmith, Katherine; McLaughlin, Paige; Qayyum, Zheala; van Schalkwyk, Gerrit I

    2016-02-01

    Social media is an increasingly dominant platform for communication, especially among adolescents. Statements from professional bodies and a growing body of empirical evidence support a role for social media in improving provider-patient interactions. In psychiatry, particular concerns exist about the suitability of this style of communication. Very limited data are available exploring how patients would like to incorporate social media into their communication with their psychiatric providers. We conducted a qualitative study with 20 adolescents attending the Yale Psychiatric Hospital Intensive Outpatient Programme. Interviews were analysed using inductive thematic analysis. Participants highlighted how social media could allow for constant access to a mental health provider, provide a less anxiety-provoking mode of communication, and allow for them to be monitored in a more on-going fashion. However, participants also identified many potential risks associated with these applications, including the potential for anxiety if a provider was not able to respond immediately, and a sense that online interactions would be less rich overall. Our findings suggest that adolescents are open to the idea of communicating with mental health providers over social media and are able to describe a number of instances where this could be of value. The risks participants described, as well as concerns raised by existing literature, indicate the need for further work and protocol development in order for social media to be a feasible tool for communication between providers and adolescents with psychiatric illness. © 2015 John Wiley & Sons Ltd.

  12. Building a new life: a chaplain's theory based case study of chronic illness.

    Science.gov (United States)

    Risk, James L

    2013-01-01

    This article presents the case study of spiritual care for a patient suffering from Parkinson's disease who was referred to the chaplain in an out-patient depression research program. The chaplain's interventions were informed by an application of narrative theory, and the article demonstrates how this theory enabled the chaplain to help a patient develop new coping strategies for dealing with chronic disease. Using narrative theory, the chaplain assisted the patient to develop a new sense of identity as a spiritual, contingent self as the disease eroded his physical self and former life. The article includes a description of a patient's spiritual needs, chaplain interventions, and an outcomes measure of those interventions. The author argues that narrative theory provides chaplains with a language to identify and craft the unique intervention that spiritual care has in the life trajectory of this Parkinson's patient and other patients dealing with chronic illnesses.

  13. Working and caring for a child with chronic illness: A review of current literature.

    Science.gov (United States)

    Kish, A M; Newcombe, P A; Haslam, D M

    2018-05-01

    Advances in medical knowledge have contributed to the increase in the number of children living with some form of long-term chronic illness or condition. As a consequence of these advancements, treatments that are more accessible and easier to administer, usually within a child's home, have been developed. However, this may mean that parents take on greater treatment responsibility and require extra time and energy to meet these tasks, additional to other responsibilities. This review paper aims to summarize and critique existing literature on working parents of children with a chronic condition, by focusing on patterns of parent work, the challenges experienced, and the flow-on consequences to well-being. Employing a narrative, meta-synthesis of the current literature, this review identified 3 key themes related to working parents of children with chronic illness. The paper first identifies that although employment is less common, these parents are not necessarily nonworking. Second, these parents experience numerous challenges including balancing work and family, time constraints, stress, and feelings of "doing it all." And third, the above challenges lead to additional impacts on parental quality of life. This review summarizes what is currently known about work patterns, challenges, and consequences in parents of children with chronic conditions. Employment is clearly impacted for these parents. Although workplace challenges have been extensively researched, other challenges (eg, personal and family) and impacts on their well-being have not. This review discusses the present standing of this research. It outlines the strengths and limitations of the current literature, makes recommendations for future research, and suggests theoretical and practical implications of the further findings. © 2018 John Wiley & Sons Ltd.

  14. A qualitative study examining health literacy and chronic illness self-management in Hispanic and non-Hispanic older adults

    Directory of Open Access Journals (Sweden)

    Jacobs RJ

    2017-04-01

    Full Text Available Robin J Jacobs,1 Raymond L Ownby,2 Amarilis Acevedo,3 Drenna Waldrop-Valverde4 1Department of Family and Community Medicine, Baylor College of Medicine, Houston, TX, 2College of Osteopathic Medicine, 3College of Psychology, Nova Southeastern University, Fort Lauderdale, FL, 4Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA, USA Purpose: Chronic illness and low levels of health literacy affect health outcomes for many individuals, particularly older adults and racial/ethnic minorities. This study sought to understand the knowledge, strengths, and areas of need regarding self-management of chronic illness in order to lay the groundwork for content development of an intervention to increase health literacy and maximize patient engagement in chronic disease self-care.Patients and methods: In-depth, qualitative interviews were conducted in Spanish and English with 25 older adults with various chronic illnesses. Topics included knowledge and understanding of chronic conditions, medications, and disease self-management skills. Qualitative data were coded by searching text and conducting cross-case analysis. An inductive analysis was then employed to allow for the patterns and themes to emerge.Results: Emerged themes included 1 social support, 2 coping strategies, 3 spirituality, 4 chronic disease health literacy, 5 anger, and 6 depression. While participants had a general overall knowledge of chronic illness, they had deficits in knowledge regarding their own illnesses and medications.Conclusion: Chronic illness self-management is a complex and dynamic behavioral process. This study identified themes that leverage patient motivation to engage in self-care in a personalized manner. This information will guide the development of an intervention to promote health literacy and optimal disease self-management. Keywords: health disparities, older adults, resilience, computer interventions, comorbidity, multimorbidity

  15. Using Freire's Participatory Educational Method to Understand the Experience of Living With Chronic Illness in the Current Age of Globalization.

    Science.gov (United States)

    Camargo Plazas, Maria del Pilar; Cameron, Brenda L

    2015-06-01

    Many approaches and efforts have been used to better understand chronic diseases worldwide. Yet, little is known about the meaning of living with chronic illness under the pressures of globalization and neoliberal ideologies. Through Freire's participatory educational method, this article presents an innovative approach to understanding the multiple dimensions of living with chronic illness. In this way, we hope to use an innovative approach to address the impact of globalization on the daily life of chronically ill people and thus expand to the body of knowledge on nursing. This article uses Freire's participatory educational method to understand the multiple dimensions of living with chronic illness. This qualitative study follows an interpretive inquiry approach and uses a critical hermeneutic phenomenological method and critical research methodologies. Five participants were recruited for this participatory educational activity. Data collection methods included digitally recorded semistructured individual interviews and a Freire's participatory educational method session. Data analysis included a thematic analysis. Participants reported lacking adequate access to healthcare services because of insurance policies; a general perception that they were an unwanted burden on the healthcare system; and a general lack of government support, advocacy, and political interest. This research activity assisted participants to gain a new critical perspective about the condition of others with chronic diseases and thus provided an enlightening opportunity to learn about the illnesses and experiences of others and to realize that others experienced the same oppression from the healthcare system. Participants became agents of change within their own families and communities. Chronic diseases cause many economic and social consequences in their victims. These findings urge us to move from merely acknowledging the difficulties of people who live with chronic illness in an age of

  16. Development and Validation of an Instrument for Assessing Patient Experience of Chronic Illness Care

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    José Joaquín Mira

    2016-08-01

    Full Text Available Introduction: The experience of chronic patients with the care they receive, fuelled by the focus on patient-centeredness and the increasing evidence on its positive relation with other dimensions of quality, is being acknowledged as a key element in improving the quality of care. There are a dearth of accepted tools and metrics to assess patient experience from the patient’s perspective that have been adapted to the new chronic care context: continued, systemic, with multidisciplinary teams and new technologies. Methods: Development and validation of a scale conducting a literature review, expert panel, pilot and field studies with 356 chronic primary care patients, to assess content and face validities and reliability. Results: IEXPAC is an 11+1 item scale with adequate metric properties measured by Alpha Chronbach, Goodness of fit index, and satisfactory convergence validity around three factors named: productive interactions, new relational model and person’s self-management. Conclusions: IEXPAC allows measurement of the patient experience of chronic illness care. Together with other indicators, IEXPAC can determine the quality of care provided according to the Triple Aim framework, facilitating health systems reorientation towards integrated patient-centred care.

  17. Cognitive Biases in Children and Adolescents With Chronic Pain: A Review of Findings and a Call for Developmental Research.

    Science.gov (United States)

    Lau, Jennifer Y F; Heathcote, Lauren C; Beale, Sarah; Gray, Suzy; Jacobs, Konrad; Wilkinson, Nick; Crombez, Geert

    2018-06-01

    Cognitive biases that emphasize bodily harm, injury, and illness could play a role in the maintenance of chronic pain by facilitating fear and avoidance. Whereas extensive research has established attention, interpretation, and memory biases in adults with chronic pain, far less is known about these same biases in children and adolescents with pain. Studying cognitive biases in attention, interpretation, and memory in relation to pain occurring in youth is important because youth is a time when pain can first become chronic, and when relationships between cognitive biases and pain outcomes emerge and stabilize. Thus, youth potentially offers a time window for the prevention of chronic pain problems. In this article, we summarize the growing corpus of data that have measured cognitive biases in relation to pediatric pain. We conclude that although biases in attention, interpretation, and memory characterize children and adolescents with varying pain experiences, questions regarding the direction, magnitude, nature, and role of these biases remain. We call for independent extension of cognitive bias research in children and adolescents, using well powered longitudinal studies with wide age ranges and psychometrically sound experimental measures to clarify these findings and any developmental trends in the links between cognitive biases and pain outcomes. This article provides a rationale for the theoretical and practical importance of studying the role of cognitive biases in children and adolescents with chronic pain, which has to date, been relatively understudied. Existing findings are reviewed critically, and recommendations for future research are offered. Copyright © 2018 The American Pain Society. Published by Elsevier Inc. All rights reserved.

  18. Adaptation and validation of the patient assessment of chronic illness care in the French context.

    Science.gov (United States)

    Krucien, Nicolas; Le Vaillant, Marc; Pelletier-Fleury, Nathalie

    2014-06-19

    Chronic diseases are major causes of disability worldwide with rising prevalence. Most patients suffering from chronic conditions do not always receive optimal care. The Chronic Care Model (CCM) has been developed to help general practitioners making quality improvements. The Patient Assessment of Chronic Illness Care (PACIC) questionnaire was increasingly used in several countries to appraise the implementation of the CCM from the patients' perspective. The objective of this study was to adapt the PACIC questionnaire in the French context and to test the validity of this adaptation in a sample of patients with multiple chronic conditions. The PACIC was translated into French language using a forward/backward procedure. The French version was validated using a sample of 150 patients treated for obstructive sleep apnea syndrome (OSAS) and having multiple chronic co-morbidities. Several forms of validity were analysed: content; face; construct; and internal consistency. The construct validity was investigated with an exploratory factorial analysis. The French-version of the PACIC consisted in 18 items, after merging two pairs of items due to redundancy. The high number of items exhibiting floor/ceiling effects and the non-normality of the ratings suggested that a 5-points rating scale was somewhat inappropriate to assess the patients' experience of care. The construct validity of the French-PACIC was verified and resulted in a bi-dimensional structure. Overall this structure showed a high level of internal consistency. The PACIC score appeared to be significantly related to the age and self-reported health of the patients. A French-version of the PACIC questionnaire is now available to evaluate the patients' experience of care and to monitor the quality improvements realised by the medical structures. This study also pointed out some methodological issues about the PACIC questionnaire, related to the format of the rating scale and to the structure of the

  19. The relation of illness perceptions to stress, depression, and fatigue in patients with chronic lymphocytic leukaemia.

    Science.gov (United States)

    Westbrook, Travis D; Maddocks, Kami; Andersen, Barbara L

    2016-07-01

    Chronic lymphocytic leukaemia (CLL) is the most prevalent adult leukaemia and is incurable. The course and treatment of CLL is unique and characterised by repeated cycles of treatment, stable disease and relapse. Utilising a Self-Regulatory Model framework, we examined the relationship between patients' illness perceptions and cancer-specific stress, depressive symptoms and fatigue. Our aim was to test illness perceptions as predictors of these outcomes when variance due to disease and treatment variables was controlled. Data were collected on 147 patients with relapsed/refractory CLL as they entered a phase II clinical trial of an investigational medication at a university affiliated, National Cancer Institute designated comprehensive cancer center. Cancer-specific stress, depressive symptoms and fatigue interference. . Hierarchical multiple regression was used. Consequences and emotional representation were related to all outcomes (ps stress (p fatigue interference (p stress, depressive symptoms and fatigue interference in relapsed/refractory CLL. Interventions targeted at restructuring maladaptive illness perceptions may have clinical benefit in this population.

  20. LIFE QUALITY IN CASES WITH CHRONICAL DEGENERATIVE ILLNESS OF LOCOMOTIVE SYSTEM REGARDING SEX, AGE AND OVERWEIGHT

    Directory of Open Access Journals (Sweden)

    Munevera Bećarević

    2012-09-01

    Full Text Available Disturbances of muscle and skeleton system are related to pain, functional damages and inability to work. Measure of life quality offers a sequence of data on illness influence on everyday functioning. The aim of this paper is evaluation of life quality in cases with degenerative illnesses of locomotive system and influence of sex, age, weist and BMI on life quality. Epidemiologic research was conducted on 71 tested subjects with diagnosis of chronical degenerative reumatical illness. Tested subject were measured weist values, BMI was determined and all of them fulfilled EQ5D questionnaire for life quality assessment. According to VAS scale their health condition was evaluated. Life quality of tested subjects was decreased especially in department of depression and increased concern (2.30 – 2.57 as well as pain and discomfort (2.11 – 2.31. We didn't determine statistically significant sex influence (p> 0,05, age, (p> 0,05 weist values (p> 0,05 or BMI (p> 0,05 our tested subjects life quality. According to VAS scale health condition of tested subjects is low (6, 76 ± 1,04.

  1. Family carers: A role in addressing chronic disease risk behaviours for people with a mental illness?

    Science.gov (United States)

    Bailey, Jacqueline M; Wye, Paula M; Wiggers, John H; Bartlem, Kate M; Bowman, Jennifer A

    2017-09-01

    People with a mental illness experience greater chronic disease morbidity and mortality compared to those without mental illness. Family carers have the potential to promote the health behaviours of those they care for however factors which may influence the extent to which they do so have not been reported. An exploratory study was conducted to investigate carers': 1) promotion of fruit and vegetable consumption, physical activity, quitting smoking, and reducing alcohol consumption; 2) perceptions of their role and ability to promote such behaviours; 3) and the association between carer perceptions and the promotion of such behaviours. A cross-sectional survey was conducted with mental health carers ( N  = 144, 37.6% response rate) in New South Wales, Australia in 2013. Associations between current promotion of health behaviours and carer perceptions were explored through multivariate regression analysis in 2016. A majority of respondents promoted fruit and vegetable consumption (63.8%), physical activity (60.3%), quitting smoking (56.3%), and reducing alcohol consumption (56.2%) to the person they cared for. A perception that it was 'very important' to have a positive influence on these behaviours was positively related with promotion of each of the four behaviours, with those holding such a view being more likely to promote such behaviours, than those who did not (odds ratio: 9.47-24.13, p  mental illness.

  2. [Prevention and management of refeeding syndrome in patients with chronic critical illness].

    Science.gov (United States)

    Chen, Jun; Fan, Chaogang

    2016-07-01

    Nutritional support is an important means to treat the patients with chronic critical illness for commonly associated malnutrition. Refeeding syndrome is a serious complication during the process, mainly manifested as severe electrolyte with hypophosphataemia being the most common. Refeeding syndrome is not uncommon but it is often ignored. In our future clinical work, we need to recognize this chinical situation and use preventative and treatment measures. According to NICE clinical nutrition guideline, we discussed the risk factors, treatment methods and preventive measures of refeeding syndrome in patients with chronic critical illness. We argued that for patients with high risk refeeding syndrome, nutritional support treatment should be initially low calorie and slowly increased to complete requirement. Circulation capacity should be recovered, fluid balance must be closely monitored and supplement of vitamins, microelement, electrolytes should be noted. After the emergence of refeeding syndrome, we should reduce or even stop the calorie intake, give an active treatment for electrolyte disorder, provide vitamin B, and maintain the functions of multiple organs.

  3. Nursing care gestion of chronically ill elderly people. Policlinico 2, year 2007

    Directory of Open Access Journals (Sweden)

    Liudmila Carbonell Sanamé

    2009-01-01

    Full Text Available A descriptive prospective study was made to those patients aged more than 60 years who are attended in the Policlinico 2 “Leonilda Tamayo Matos” in Isla de la Juventud during the year 2007. The study population was 1254 and 700 chronically ill elderly people were taken as representative sample, using a simple random sampling. The Mini Mental State Examination and a satisfaction survey was made to old people, all these with their informed consent. The main variables to study were: sex, age, race, civil state, educational level, work, assistance to the Grandparent’s Circle and satisfaction level. There exists a feminine predominance (61% over male, as well as the age group from 60 to 64 years old. Mixed race is the most common one (43%, followed by black (35%. 43% of these elders have secondary studies, and 64% of them are retired. The assistance to the Grandparent’s Circle is good, 338 of all the elders studied (48.2% assist to it. The results were expressed with real numbers and percentages, and were represented in bar and pie charts. There exists a predominance of arterial hypertension and diabetes mellitus in the elders studied. The quality of the nursing cares to the chronically ill old people of the policlinic 2 in 2007 was good.

  4. Hospital-based school for children with chronic illness in Taiwan.

    Science.gov (United States)

    Chen, Der-Fang; Tsai, Tsuen-Chiuan; Su, Yu-Tsun; Lin, Chi-Wei

    2015-10-01

    To provide educational support and avoid unwanted damage that may impede learning for children with chronic illness, the learning environment should be friendly and safe. There is a need to establish schools inside hospitals, however, which may be neglected in a highly efficient health care system. A study was conducted to identify hospital-based schools for sick children in Taiwan, and to explore the barriers for implementation. The data were collected by structured telephone interview and retrieval of hospital web information. The study targeted social workers and nurses in the pediatric wards of 29 hospitals, plus officials from the Education Bureau in Taiwan. The interviewers inquired about the availability of a formal educational program inside hospitals and the barriers (if any) in providing educational supports. Taiwan has only one hospital-based informal school and eight hospitals with rotating bedside teachers. Education inside hospitals occurs mostly through voluntary teaching in informal education models. Information about special educational resources has not been widely distributed to patients and health care providers. Professional personnel in Taiwan are not well aware of the needs to establish a hospital-based school. The educational needs of children with chronic illness can be easily neglected even in an industrialized country. The establishment of policy and the enrichment of professional education on advocacy are necessary to eliminate educational inequities and benefit sick children. Copyright © 2014. Published by Elsevier B.V.

  5. Chronic Neurodegenerative Illnesses and Epilepsy in Danish Adventists and Baptists: A Nationwide Cohort Study.

    Science.gov (United States)

    Thygesen, Lau Caspar; Gimsing, Louise NØrreslet; Bautz, Andrea; Hvidt, Niels Christian; Johansen, Christoffer

    2017-01-01

    Limited knowledge of the influence of lifestyle risk factors and religious living on chronic neurological diseases exists. Seventh-day Adventists (SDA) do not consume tobacco, alcohol, or pork, and many adhere to lacto-ovo-vegetarian diet, and Baptists discourage excessive use of alcohol and tobacco. We investigated whether the incidence of four common chronic neurological illnesses: dementia, Alzheimer's disease, Parkinson's disease, and epilepsy in a large cohort of Danish Adventists and Baptists was different compared to the general Danish population. Three of the illnesses are neurodegenerative, whereas epilepsy can occur at any age. We compared hospital admission rates for some major neurological diseases among members of the Danish Religious Societies Health Study comprising 6,532 SDA and 3,720 Baptists with the general Danish population. Standardized incidence ratios (SIR) stratified by sex, age, and calendar time were calculated. SIR of dementia or Alzheimer's disease was significantly decreased for members of both communities (SDA, 0.78; 95% CI, 0.67-#x2013;0.90 and Baptists, 0.59; 0.47-#x2013;0.73). The SIRs of Parkinson's disease and epilepsy were not significantly different compared to the general population. We observe reduced incidence for dementia or Alzheimer's disease in a large cohort of members of two religious communities characterized by lifestyle recommendations. More studies are needed to disentangle the interaction between such lifestyle and other components of the religious belief system.

  6. Persistent Delirium in Chronic Critical Illness as a Prodrome Syndrome before Death.

    Science.gov (United States)

    DeForest, Anna; Blinderman, Craig D

    2017-05-01

    Chronic critical illness (CCI) patients have poor functional outcomes, high risk of mortality, and significant sequelae, including delirium and cognitive dysfunction. The prognostic significance of persistent delirium in patients with CCI has not been well described. We report a case of a patient with CCI following major cardiac surgery who was hemodynamically stable following a long course in the cardiothoracic intensive care unit (CTICU), but had persistent and unremitting delirium. Despite both pharmacological and nonpharmacological approaches to improve his delirium, the patient ultimately continued to have symptoms of delirium and subsequently died in the CTICU. Efforts to reconsider the goals of care, given his family's understanding of his values, were met with resistance as his cardiothoracic surgeon believed that he had a reasonable chance of recovery since his organs were not in failure. This case description raises the question of whether we should consider persistent delirium as a prodrome syndrome before death in patients with CCI. Study and analysis of a case of a patient with CCI following major cardiothoracic surgery who was hemodynamically stable with persistent delirium. Further studies of the prevalence and outcomes of prolonged or persistent agitated delirium in patients with chronic critical illness are needed to provide prognostic information that can assist patients and families in receiving care that accords with their goals and values.

  7. Pervasive developmental disorder behavior in adolescents with intellectual disability and co-occurring somatic chronic diseases

    NARCIS (Netherlands)

    Oeseburg, B.; Groothoff, J. W.; Dijkstra, G. J.; Reijneveld, S. A.; Jansen, D. E. M. C.

    2010-01-01

    Evidence on the association between somatic chronic diseases in ID-adolescents and the full range of pervasive developmental disorder behavior (PDD behavior) is scarce. The aim of the present study is to assess the association between somatic chronic diseases in ID-adolescents and mild PDD behavior.

  8. Chronic pain and its impact on quality of life in adolescents and their families

    NARCIS (Netherlands)

    J.A.M. Hunfeld (Joke); C.W. Perquin (Christel); H.J. Duivenvoorden (Hugo); A.A.J.M. Hazebroek-Kampschreur (Alice); J. Passchier (Jan); L.W.A. van Suijlekom-Smit (Lisette); J.C. van der Wouden (Hans)

    2001-01-01

    textabstractOBJECTIVE: To study chronic pain not caused by somatic disease in adolescents and the effect of pain on the quality of life of the adolescents and their families. METHODS: One hundred twenty-eight youngsters (12-18 years) who had reported chronic pain

  9. Pre-travel advice seeking from GPs by travellers with chronic illness seen at a travel clinic.

    Science.gov (United States)

    Gagneux-Brunon, Amandine; Andrillat, Carole; Fouilloux, Pascale; Daoud, Fatiha; Defontaine, Christiane; Charles, Rodolphe; Lucht, Frédéric; Botelho-Nevers, Elisabeth

    2016-03-01

    Travellers are ageing and frequently report chronic illness. Pre-travel health advice is crucial, particularly in this subgroup, and general practitioners (GPs) are first in line for treatment adjustment before departure. Our aim is to evaluate pre-travel health advice seeking from GPs by travellers with chronic illness seen at a travel clinic. A cross-sectional observational survey using a questionnaire was conducted between August 2013 and July 2014 in travellers attending the travel medicine clinic of a tertiary university hospital in France. During the study, 2019 travellers were included. Mean age was 39.4 years (±18.8). Three hundred and ninety-one (19.4%) travellers reported a history of a chronic illness. Arterial hypertension and diabetes mellitus were the most frequently reported illnesses, affecting, respectively, 168 (8.3%) travellers and 102 (5.1%). Hajj pilgrims were more likely to report a history of chronic illness than other travellers. Only 810 (40.1%) travellers sought pre-travel advice from their GP. Six hundred and fifty-two (40.1%) healthy travellers and 158 (40.5%) travellers reporting chronic illness sought pre-travel advice from their GP (P = 0.96). Travellers with a history of chronic illness do not seek pre-travel health advice from their GP more frequently than healthy travellers. Travel health specialists are generally not the best practitioners to manage the care of underlying medical conditions presenting risks during travel. However, GPs offer continuity and disease management expertise to improve the specificity of pre-travel planning. Thus, ongoing collaboration between the traveller, GP and travel health specialist is likely to yield the best outcomes. © International Society of Travel Medicine, 2016. All rights reserved. Published by Oxford University Press. For permissions, please e-mail: journals.permissions@oup.com.

  10. Chronic illness and multimorbidity among problem drug users: a comparative cross sectional pilot study in primary care.

    LENUS (Irish Health Repository)

    Cullen, Walter

    2009-01-01

    BACKGROUND: Although multimorbidity has important implications for patient care in general practice, limited research has examined chronic illness and health service utilisation among problem drug users. This study aimed to determine chronic illness prevalence and health service utilisation among problem drug users attending primary care for methadone treatment, to compare these rates with matched \\'controls\\' and to develop and pilot test a valid study instrument. METHODS: A cross-sectional study of patients attending three large urban general practices in Dublin, Ireland for methadone treatment was conducted, and this sample was compared with a control group matched by practice, age, gender and General Medical Services (GMS) status. RESULTS: Data were collected on 114 patients. Fifty-seven patients were on methadone treatment, of whom 52(91%) had at least one chronic illness (other then substance use) and 39(68%) were prescribed at least one regular medication. Frequent utilisation of primary care services and secondary care services in the previous six months was observed among patients on methadone treatment and controls, although the former had significantly higher chronic illness prevalence and primary care contact rates. The study instrument facilitated data collection that was feasible and with minimal inter-observer variation. CONCLUSION: Multimorbidity is common among problem drug users attending general practice for methadone treatment. Primary care may therefore have an important role in primary and secondary prevention of chronic illnesses among this population. This study offers a feasible study instrument for further work on this issue. (238 words).

  11. Chronic illness and multimorbidity among problem drug users: a comparative cross sectional pilot study in primary care.

    LENUS (Irish Health Repository)

    Cullen, Walter

    2012-02-01

    BACKGROUND: Although multimorbidity has important implications for patient care in general practice, limited research has examined chronic illness and health service utilisation among problem drug users. This study aimed to determine chronic illness prevalence and health service utilisation among problem drug users attending primary care for methadone treatment, to compare these rates with matched \\'controls\\' and to develop and pilot test a valid study instrument. METHODS: A cross-sectional study of patients attending three large urban general practices in Dublin, Ireland for methadone treatment was conducted, and this sample was compared with a control group matched by practice, age, gender and General Medical Services (GMS) status. RESULTS: Data were collected on 114 patients. Fifty-seven patients were on methadone treatment, of whom 52(91%) had at least one chronic illness (other then substance use) and 39(68%) were prescribed at least one regular medication. Frequent utilisation of primary care services and secondary care services in the previous six months was observed among patients on methadone treatment and controls, although the former had significantly higher chronic illness prevalence and primary care contact rates. The study instrument facilitated data collection that was feasible and with minimal inter-observer variation. CONCLUSION: Multimorbidity is common among problem drug users attending general practice for methadone treatment. Primary care may therefore have an important role in primary and secondary prevention of chronic illnesses among this population. This study offers a feasible study instrument for further work on this issue. (238 words).

  12. Being adolescent with chronic renal failure: a view through existential phenomenology

    Directory of Open Access Journals (Sweden)

    Marcela Astolphi de Souza

    2018-05-01

    Full Text Available Abstract Objective: To understand adolescent's experiences with chronic renal failure disease, attended in a pubic teaching hospital at São Paulo state. Method: Phenomenological study, based on the philosophical reference of Martin Heidegger, with six adolescents interviewed by the following question: "What is it like to be an adolescent with chronic renal failure?" Results: Three ontological categories emerged: feeling different; experiencing renal insufficiency through renal replacement therapy; seeking normality. Conclusion: It was evidenced that the experiences of these adolescents were demonstrated by their behaviors of acceptance and denial, both related to chronic renal failure as a peculiar condition of their lives. Implications for practice: It is crucial that nursing directs a more careful look at adolescents with chronic renal failure, going beyond the disease and also considering the particularities of the adolescents necessary to face the adversities that arise from this experience.

  13. Psychosocial well-being in young adults with chronic illness since childhood: the role of illness cognitions

    NARCIS (Netherlands)

    Verhoof, Eefje J. A.; Maurice-Stam, Heleen; Heymans, Hugo S. A.; Evers, Andrea W. M.; Grootenhuis, Martha A.

    2014-01-01

    Background: More and more pediatric patients reach adulthood. Some of them are successfully integrating in adult life, but many others are not. Possibly Illness cognitions (IC) - the way people give meaning to their illness/disability - may play a role in individual differences on long-term

  14. Honest, Open, Proud for adolescents with mental illness: pilot randomized controlled trial.

    Science.gov (United States)

    Mulfinger, Nadine; Müller, Sabine; Böge, Isabel; Sakar, Vehbi; Corrigan, Patrick W; Evans-Lacko, Sara; Nehf, Luise; Djamali, Julia; Samarelli, Anna; Kempter, Michael; Ruckes, Christian; Libal, Gerhard; Oexle, Nathalie; Noterdaeme, Michele; Rüsch, Nicolas

    2018-06-01

    Due to public stigma or self-stigma and shame, many adolescents with mental illness (MI) struggle with the decision whether to disclose their MI to others. Both disclosure and nondisclosure are associated with risks and benefits. Honest, Open, Proud (HOP) is a peer-led group program that supports participants with disclosure decisions in order to reduce stigma's impact. Previously, HOP had only been evaluated among adults with MI. This two-arm pilot randomized controlled trial included 98 adolescents with MI. Participants were randomly assigned to HOP and treatment as usual (TAU) or to TAU alone. Outcomes were assessed pre (T0/baseline), post (T1/after the HOP program), and at 3-week follow-up (T2/6 weeks after T0). Primary endpoints were stigma stress at T1 and quality of life at T2. Secondary outcomes included self-stigma, disclosure-related distress, empowerment, help-seeking intentions, recovery, and depressive symptoms. The trial is registered on ClinicalTrials (NCT02751229; http://www.clinicaltrials.gov). Compared to TAU, adolescents in the HOP program showed significantly reduced stigma stress at T1 (d = .92, p self-stigma, disclosure-related distress, secrecy, help-seeking intentions, attitudes to disclosure, recovery, and depressive symptoms. Effects at T1 remained stable or improved further at follow-up. In a limited economic evaluation HOP was cost-efficient in relation to gains in quality of life. As HOP is a compact three-session program and showed positive effects on stigma and disclosure variables as well as on symptoms and quality of life, it could help to reduce stigma's negative impact among adolescents with MI. © 2017 Association for Child and Adolescent Mental Health.

  15. Ethics, Emotions, and the Skills of Talking About Progressing Disease With Terminally Ill Adolescents: A Review.

    Science.gov (United States)

    Rosenberg, Abby R; Wolfe, Joanne; Wiener, Lori; Lyon, Maureen; Feudtner, Chris

    2016-12-01

    For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help to facilitate adolescents' emerging autonomy, they often must also work with parents' wishes to protect patients from the emotional distress of hearing bad news. We reviewed the ethical justifications for and against truth-telling, and we considered the published ethical and practice guidance, as well as the perspectives of patients, parents, and clinicians involved in these cases. We also explored particular challenges with respect to the cultural context, timing, and content of conversations at the end of adolescents' lives. In most cases, clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. We suggest some "phrases that help" when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members. The pediatrician's opportunities to engage in difficult conversations about poor prognosis may be rare, but such conversations can be crucial. These discussions affect how patients live at the end of their lives, how they die, and how their families go on. Improved understanding of basic principles of communication, as well as augmented understanding of patient, family, and clinician perspectives may better enable us to navigate these important conversations.

  16. The experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings: a feminist poststructural approach: A qualitative study that explores negotiation of patient care between patients and chronically ill patients in hospital settings.

    Science.gov (United States)

    Griscti, Odette; Aston, Megan; Martin-Misener, Ruth; Mcleod, Deborah; Warner, Grace

    2016-07-01

    The aim of this study was to understand the experiences of chronically ill patients and registered nurse in negotiating patient care in hospital. Specifically, we explored how social and institutional discourses shaped power relations and negotiation of patient care. Current literature indicates that although nurses embrace this notion, such partnerships are not easily implemented. Most existing studies focus on the role of the nurse as the leader of the partnership with little attention paid to how social and institutional values, beliefs and practices shape nurse/patient power relations; or how these relationships are negotiated between nurses and patients. The theoretical and methodological approaches used in this study are based on the precepts of Foucault and feminist poststructural theorists. In depth interviews were conducted with eight chronically ill patients and 10 registered nurses. Both nurses and patients commented about the relationships that develop between nurses and chronically ill patients and how these relationships facilitate negotiation of patient care. Both parties described challenging moments and how institutional discourses may hinder positive negotiations of care. In this paper we highlight three themes that emerged: getting to know each other, they are not the sickest patients and finding time to listen. This study offers an innovative way of unpacking negotiation of care between chronically ill patients and registered nurses. It exposes how social and institutional discourses play a pivotal role in shaping negotiations between nurses and chronically ill patients. Negotiating care with chronically ill patients is not as asymmetric as portrayed in some of the literature and tends to be based on mutual agreements between nurses and patients. Nurses make it a point to listen to patients' needs and resist institutional discourses that preclude them from spending time with patients. © 2016 John Wiley & Sons Ltd.

  17. What helps or undermines adolescents' anticipated capacity to cope with mental illness stigma following psychiatric hospitalization.

    Science.gov (United States)

    Moses, Tally

    2015-05-01

    Better understanding of the individual and environmental factors that promote adolescents' use of more or less adaptive coping strategies with mental illness stigma would inform interventions designed to bolster youth resilience. This cross-sectional study draws on data from research on adolescents' well-being after discharge from a first psychiatric hospitalization to explore the relationships between anticipated coping in reaction to a hypothetical social stigma scenario, and various factors conceptualized as 'coping resource' and 'coping vulnerability' factors. Focusing on coping strategies also identified in the companion article, we hypothesize that primary and secondary control engagement coping would relate to more coping resource and less coping vulnerability factors, and the opposite would be true for disengagement, aggression/confrontation and efforts to disconfirm stereotypes. Data were elicited from interviews with 102 adolescents within 7 days of discharge. Hypothesized coping resource factors included social resources, optimistic illness perceptions, better hospital experiences and higher self-esteem. Vulnerability factors included more previous stigma experiences, desire for concealment of treatment, more contingent self-worth, higher symptom levels and higher anticipated stress. Multivariate ordinary least squares (OLS) regression was used to analyze associations between coping strategy endorsement and correlates. Although some coping correlates 'behaved' contrary to expectations, for the most part, our hypotheses were confirmed. As expected, youth anticipating reacting to the stigmatizing situation with greater disengagement, aggression/confrontation or efforts to disconfirm stenotypes rated significantly lower on 'coping resources' such as self-esteem and higher on vulnerability factors such as symptom severity. The opposite was true for youth who anticipated exercising more primary and secondary control engagement coping. This study begins to

  18. Behavioral effects of chronic adolescent stress are sustained and sexually dimorphic

    Science.gov (United States)

    Bourke, Chase H.; Neigh, Gretchen N.

    2011-01-01

    Evidence suggests that women are more susceptible to stress-related disorders than men. Animal studies demonstrate a similar female sensitivity to stress and have been used to examine the underlying neurobiology of sex-specific effects of stress. Although our understanding of the sex-specific effects of chronic adolescent stress has grown in recent years, few studies have reported the effects of adolescent stress on depressive-like behavior. The purpose of this study was to determine if a chronic mixed modality stressor (consisting of isolation, restraint, and social defeat) during adolescence (PND37-49) resulted in differential and sustained changes in depressive-like behavior in male and female Wistar rats. Female rats exposed to chronic adolescent stress displayed decreased sucrose consumption, hyperactivity in the elevated plus maze, decreased activity in the forced swim test, and a blunted corticosterone response to an acute forced swim stress compared to controls during both adolescence (PND48-57) and adulthood (PND96-104). Male rats exposed to chronic adolescent stress did not manifest significant behavioral changes at either the end of adolescence or in adulthood. These data support the proposition that adolescence may be a stress sensitive period for females and exposure to stress during adolescence results in behavioral effects that persist in females. Studies investigating the sex-specific effects of chronic adolescent stress may lead to a better understanding of the sexually dimorphic incidence of depressive and anxiety disorders in humans and ultimately improve prevention and treatment strategies. PMID:21466807

  19. Describing and analysing primary health care system support for chronic illness care in Indigenous communities in Australia's Northern Territory – use of the Chronic Care Model

    Directory of Open Access Journals (Sweden)

    Stewart Allison

    2008-05-01

    Full Text Available Abstract Background Indigenous Australians experience disproportionately high prevalence of, and morbidity and mortality from chronic illness such as diabetes, renal disease and cardiovascular disease. Improving the understanding of how Indigenous primary care systems are organised to deliver chronic illness care will inform efforts to improve the quality of care for Indigenous people. Methods This cross-sectional study was conducted in 12 Indigenous communities in Australia's Northern Territory. Using the Chronic Care Model as a framework, we carried out a mail-out survey to collect information on material, financial and human resources relating to chronic illness care in participating health centres. Follow up face-to-face interviews with health centre staff were conducted to identify successes and difficulties in the systems in relation to providing chronic illness care to community members. Results Participating health centres had distinct areas of strength and weakness in each component of systems: 1 organisational influence – strengthened by inclusion of chronic illness goals in business plans, appointment of designated chronic disease coordinators and introduction of external clinical audits, but weakened by lack of training in disease prevention and health promotion and limited access to Medicare funding; 2 community linkages – facilitated by working together with community organisations (e.g. local stores and running community-based programs (e.g. "health week", but detracted by a shortage of staff especially of Aboriginal health workers working in the community; 3 self management – promoted through patient education and goal setting with clients, but impeded by limited focus on family and community-based activities due to understaffing; 4 decision support – facilitated by distribution of clinical guidelines and their integration with daily care, but limited by inadequate access to and support from specialists; 5 delivery system

  20. Sexual behavior, body image, and partnership in chronic illness: a comparison of Huntington's disease and multiple sclerosis.

    Science.gov (United States)

    Reininghaus, Eva; Reininghaus, Bernd; Fitz, Werner; Hecht, Karen; Bonelli, Raphael Maria

    2012-08-01

    Huntington's disease (HD) and multiple sclerosis (MS) are both chronic progressive illnesses posing a serious challenge to affected patients and families. Sexual dysfunction in HD as well as in MS is a very common problem, although it is unclear whether the dysfunction is caused by the chronic illness itself or by the sociopsychiatric burden related to the illness. Twenty-nine patients with HD and 27 patients with MS each participated in a semistructured interview and several standardized questionnaires concerning partnership, sexual function, and body image. The results display significant differences in both patient groups, displaying higher sexual desire and activity in HD patients, but MS patients also reported fewer sexual problems compared to the norming values. Conversely, the MS patients' relationships seemed to be stable despite subjectively perceived lower initiative on sexual activities. The results are discussed under the possible influences of the underlying organic changes and the psychosocial consequences of chronic progressive disorders.

  1. The relationships between depression and other outcomes of chronic illness caregiving

    Directory of Open Access Journals (Sweden)

    Jirovec Mary M

    2005-02-01

    Full Text Available Abstract Background Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction. Methods The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables. Results Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p Conclusion Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.

  2. Specialist home-based nursing services for children with acute and chronic illnesses.

    Science.gov (United States)

    Parab, Chitra S; Cooper, Carolyn; Woolfenden, Susan; Piper, Susan M

    2013-06-15

    Specialist paediatric home-based nursing services have been proposed as a cost-effective means of reducing distress resulting from hospital admissions, while enhancing primary care and reducing length of hospital stay. This review is an update of our original review, which was published in 2006. To evaluate specialist home-based nursing services for children with acute and chronic illnesses. We searched the following databases in February 2012: the Cochrane Central Register of Controlled Trials (CENTRAL) in The Cochrane Library 2012 Issue 2, Ovid MEDLINE, EMBASE, PsycINFO, CINAHL and Sociological Abstracts. We also searched ClinicalTrials.gov and the WHO International Clinical Trials Registry Platform. No language restrictions were applied. Randomised controlled trials (RCTs) of children from birth to age 18 years with acute or chronic illnesses allocated to specialist home-based nursing services compared with conventional health care. Outcomes included utilisation of health care, physical and mental health, satisfaction, adverse health outcomes and costs. Two review authors extracted data from the studies independently and resolved any discrepancies by recourse to a third author. Meta-analysis was not appropriate because of the clinical diversity of the studies and the lack of common outcome measures. We screened 4226 titles to yield seven RCTs with a total of 840 participants. Participants, interventions and outcomes were diverse. No significant differences were reported in health outcomes; two studies reported a reduction in the hospital stay with no difference in the hospital readmission rates. Three studies reported a reduction in parental anxiety and improvement in child behaviours was reported in three studies. Overall increased parental satisfaction was reported in three studies. Also, better parental coping and family functioning was reported in one study. By contrast, one study each reported no impact on parental burden of care or on functional status of

  3. Double jeopardy: assessing the association between internal displacement, housing quality and chronic illness in a low-income neighborhood.

    Science.gov (United States)

    Habib, Rima R; Yassin, Nasser; Ghanawi, Joly; Haddad, Pascale; Mahfoud, Ziyad

    2011-04-01

    PURPOSE: This study analyzed associations between war-related internal displacement, housing quality and the prevalence of chronic illness in Nabaa, a low-income neighborhood on the outskirts of Beirut, Lebanon. METHODS: A cross-sectional survey of sociodemographics, household characteristics and health conditions of the study population was carried out in 2002. Using a structured questionnaire, the research team surveyed 1,151 households representing 4,987 residents of all ages. The survey was administered to a proxy respondent from each household in face-to-face interviews. A multiple logistic regression model using the generalized estimation equation method was constructed to assess the simultaneous effect of displacement and housing quality on reported ill health, while adjusting for potential confounders. RESULTS: Housing quality and internal displacement were strongly associated with occurrences of chronic illness. The most vulnerable respondents were older residents, females and internally displaced people, who reported high rates of chronic illnesses. Residents with high levels of education were less likely to report a chronic illness than those that had elementary education or less. CONCLUSION: Nabaa residents' experience of poor health was associated with inadequate housing quality. Moreover, residents who have been displaced experience worse living conditions and were more likely to experience poor health than those who were not displaced. These results reveal a need for policies to improve housing quality and alleviate war-related consequences in low-income neighborhoods.

  4. Effectiveness of neurofeedback therapy for anxiety and stress in adults living with a chronic illness: a systematic review protocol.

    Science.gov (United States)

    Blaskovits, Farriss; Tyerman, Jane; Luctkar-Flude, Marian

    2017-07-01

    The objective of this review is to systematically examine the effectiveness of neurofeedback therapy for managing anxiety and stress in adults living with a chronic illness.The specific objectives are to identify which neurofeedback systems and/or protocols demonstrate effectiveness and determine the level of supporting evidence.The review question is as follows: What is the effectiveness of neurofeedback therapy for managing anxiety and stress in an adult population aged 18 years of age or older living with a chronic illness?

  5. Impact of chronic illness timing and persistence at school entry on child and parent outcomes: Australian longitudinal study.

    Science.gov (United States)

    Quach, Jon; Barnett, Tony

    2015-01-01

    To understand the prevalence and timing of child chronic illness at school entry; associations with child learning, behavior and health-related quality of life and parent mental health at ages 6 to 7, 8 to 9, and 10 to 11 years; and cumulative health care costs. Data were drawn from the first 4 waves of the Longitudinal Study of Australian Children. Children were aged 4 to 5 years at wave 1, with data collection every 2 years. Parent-reported timing of child chronic illness at school entry was categorized into 4 chronic illness groups based on changes between waves 1 and 2: none, resolving, incident and persistent. Child outcomes included: parent-reported quality of life, parent- and teacher-reported behavior, teacher-reported child learning, teacher-reported child-teacher relationship, directly assessed nonverbal and verbal cognition and parent self-reported mental health. Linear regression, adjusted for gender and socioeconomic position, was used to quantify longitudinal associations between chronic illness timing at school entry with outcomes at age 6 to 7 years, 8 to 9 years and 10 to 11 years. Of the 4983 children enrolled in the study, chronic illness data was available for 4464 children (89.6%) at both waves 1 and 2. From wave 1, 6.1% had a condition that persisted until wave 2, while 14.1% had a condition that resolved. Furthermore, 4.7% had a newly emerging condition at wave 2. Compared with the no chronic illness group, children with persistent or emerging chronic illness during school entry had the poorest outcomes (except father's mental health) at all time points, while children with resolving conditions had smaller differences. Child chronic illness at school entry is associated with poorer longitudinal child and maternal outcomes. Therefore, future research should aim to determine the risk and protective factors that contribute to the poorer child and parent outcomes experienced in this growing population. Copyright © 2015 Academic Pediatric

  6. Illness representations as mediators of the relationship between dispositional optimism and depression in patients with chronic tinnitus: A cross-sectional study.

    NARCIS (Netherlands)

    Vollmann, Manja; Scharloo, Margreet; Langguth, Berthold; Kalkouskaya, Natallia; Salewski, Christel

    2014-01-01

    Objective: Both dispositional optimism and illness representations are related to psychological health in chronic patients. In a group of chronic tinnitus sufferers, the interplay between these two variables was examined. Specifically, it was tested to what extent the relationship between

  7. Plasma cytokine expression in adolescent chronic fatigue syndrome.

    Science.gov (United States)

    Wyller, Vegard Bruun; Sørensen, Øystein; Sulheim, Dag; Fagermoen, Even; Ueland, Thor; Mollnes, Tom Eirik

    2015-05-01

    Chronic fatigue syndrome (CFS) is a prevalent and disabling condition among adolescents. The pathophysiology is poorly understood, but low-grade systemic inflammation has been suggested as an important component. This study compared circulating levels of individual cytokines and parameters of cytokine networks in a large set of adolescent CFS patients and healthy controls, and explored associations between cytokines and symptoms in the CFS group. CFS patients (12-18years old) were recruited nation-wide to a single referral center as part of the NorCAPITAL project (ClinicalTrials ID: NCT01040429). A broad case definition of CFS was applied, requiring three months of unexplained, disabling chronic/relapsing fatigue of new onset, whereas no accompanying symptoms were necessary. Thus, the case definition was broader than the Fukuda-criteria of CFS. Healthy controls having comparable distribution of gender and age were recruited from local schools. Twenty-seven plasma cytokines, including interleukins, chemokines and growth factors were assayed using multiplex technology. The results were subjected to network analyses using the ARACNE algorithm. Symptoms were charted by a questionnaire, and patients were subgrouped according to the Fukuda-criteria. A total of 120 CFS patients and 68 healthy controls were included. CFS patients had higher scores for fatigue (p<0.001) and inflammatory symptoms (p<0.001) than healthy controls. All cytokine levels and cytokine network parameters were similar, and none of the differences were statistically different across the two groups, also when adjusting for adherence to the Fukuda criteria of CFS. Within the CFS group, there were no associations between aggregate cytokine network parameters and symptom scores. Adolescent CFS patients are burdened by symptoms that might suggest low-grade systemic inflammation, but plasma levels of individual cytokines as well as cytokine network measures were not different from healthy controls, and

  8. Cost-of-illness studies in chronic ulcers: a systematic review.

    Science.gov (United States)

    Chan, B; Cadarette, S; Wodchis, W; Wong, J; Mittmann, N; Krahn, M

    2017-04-01

    To systematically review the published academic literature on the cost of chronic ulcers. A literature search was conducted in MEDLINE, EMBASE, HealthSTAR, Econlit and CINAHL up to 12 May 2016 to identify potential studies for review. Cost search terms were based on validated algorithms. Clinical search terms were based on recent Cochrane reviews of interventions for chronic ulcers. Titles and abstracts were screened by two reviewers to determine eligibility for full text review. Study characteristics were summarised. The quality of reporting was evaluated using a modified cost-of-illness checklist. Mean costs were adjusted and inflated to 2015 $US and presented for different durations and perspectives. Of 2267 studies identified, 36 were eligible and included in the systematic review. Most studies presented results from the health-care public payer or hospital perspective. Many studies included hospital costs in the analysis and only reported total costs without presenting condition-specific attributable costs. The mean cost of chronic ulcers ranged from $1000 per year for patient out of pocket costs to $30,000 per episode from the health-care public payer perspective. Mean one year cost from a health-care public payer perspective was $44,200 for diabetic foot ulcer (DFU), $15,400 for pressure ulcer (PU) and $11,000 for leg ulcer (LU). There was large variability in study methods, perspectives, cost components and jurisdictions, making interpretation of costs difficult. Nevertheless, it appears that the cost for the treatment of chronic ulcers is substantial and greater attention needs to be made for preventive measures.

  9. Chronic disease health risk behaviours amongst people with a mental illness.

    Science.gov (United States)

    Bartlem, Kate M; Bowman, Jennifer A; Bailey, Jacqueline M; Freund, Megan; Wye, Paula M; Lecathelinais, Christophe; McElwaine, Kathleen M; Campbell, Elizabeth M; Gillham, Karen E; Wiggers, John H

    2015-08-01

    Amongst people with a mental illness, modifiable health risk behaviours contribute substantially to increased chronic disease morbidity and mortality. This study examined the prevalence of and interest in changing such behaviours amongst community mental health service clients in Australia. A telephone interview was undertaken with Australian community mental health service clients. Participants reported engagement in four health risk behaviours: tobacco smoking, fruit and vegetable consumption, alcohol consumption, and physical activity. Participants were classified as at risk based upon Australian national guidelines. At-risk participants were asked whether they were considering improving their health risk behaviour within the next month. The association between psychiatric diagnosis and risk, and interest in improving health risk behaviours was examined. Risk prevalence was highest for inadequate vegetable consumption (78.3%), followed by inadequate fruit consumption (60%), smoking (50.7%), physical inactivity (46.8%), short-term alcohol risk (40.3%) and chronic alcohol risk (35.3%). A majority of at-risk participants were considering improving their health risk behaviour for smoking, physical inactivity and inadequate fruit and vegetable consumption (65.1%, 71.1%, and 53.3%, respectively). After adjusting for demographic factors, no diagnostic categories were associated with risk for any behaviour. Those with a diagnosis of depression were more likely to be interested in quitting smoking and increasing physical activity. Regardless of diagnosis, a high prevalence of chronic disease health risk behaviours was identified, with many participants expressing an interest in improving these behaviours. Such findings reinforce recommendations that preventive care addressing the chronic disease risks of clients be provided routinely by mental health clinicians. Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12613000693729. URL: www.anzctr.org.au/. © The

  10. Psychosocial Adaptation to Chronic Illness and Disability: A Virtue Based Model.

    Science.gov (United States)

    Kim, Jeong Han; McMahon, Brian T; Hawley, Carolyn; Brickham, Dana; Gonzalez, Rene; Lee, Dong-Hun

    2016-03-01

    Psychosocial adaptation to chronic illness and disability (CID) is an area of study where a positive psychology perspective, especially the study of virtues and character strengths, can be implemented within the rehabilitation framework. A carefully developed theory to guide future interdisciplinary research is now timely. A traditional literature review between philosophy and rehabilitation psychology was conducted in order to develop a virtue-based psychosocial adaptation theory, merging important perspectives from the fields of rehabilitation and positive psychology. The virtue-based psychosocial adaptation model (V-PAM) to CID is proposed in the present study. The model involves five qualities or constructs: courage, practical wisdom, commitment to action, integrity and emotional transcendence. Each of these components of virtue contributes to an understanding of psychosocial adaptation. The present study addresses the implications and applications of V-PAM that will advance this understanding.

  11. Continuity in care of older people chronically ill patients in a battlefield of competing rationales

    DEFF Research Database (Denmark)

    Kjerholt, Mette; Wagner, Lis; Delmar, Charlotte

    2014-01-01

    professionals' communication concerning older patients, leading to lack of continuity and integration of the patient perspective in care and treatment. In spite of these problems being well investigated, they continue to prevail. OBJECTIVES: To examine conditions for continuity and integration of the patient...... perspective in older, chronically ill patients' care as reflected in nursing staff's communication about the patients. DESIGN: Explorative Participatory Action Research (PAR). SETTING: An acute, general medical ward at a Danish university hospital. PARTICIPANTS: Hospital and municipality nurses (n = 29......). Nursing records (n = 12). METHOD: Field studies: observations, interviews, nursing records audits and logs. Data were subject to manifest and latent content analysis. RESULTS: Participants were aware of the importance of ensuring continuity, a comprehensive approach and integration of the patient...

  12. Power and resistance within the hospital's hierarchical system: the experiences of chronically ill patients.

    Science.gov (United States)

    Griscti, Odette; Aston, Megan; Warner, Grace; Martin-Misener, Ruth; McLeod, Deborah

    2017-01-01

    To explore experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings. Specifically, we explored how social and institutional discourses shape power relations during the negotiation process. The hospital system is embedded in a hierarchical structure where the voice of the healthcare provider as expert is often given more importance than the patient. This system has been criticised as being oppressive to patients who are perceived to be lower in the hierarchy. In this study, we illustrate how the hospital's hierarchical system is not always oppressing but can also create moments of empowerment for patients. A feminist poststructuralist approach informed by the teaching of Foucault was used to explore power relations between nurses and patients when negotiating patient care in hospital settings. Eight individuals who suffered from chronic illness shared their stories about how they negotiated their care with nurses in hospital settings. The interviews were tape-recorded. Discourse analysis was used to analyse the data. Patients recounted various experiences when their voices were not heard because the current hospital system privileged the healthcare provider experts' advice over the patients' voice. The hierarchical structure of hospital supported these dynamics by privileging nurses as gatekeepers of service, by excluding the patients' input in the nursing notes and through a process of self-regulation. However, patients in this study were not passive recipients of care and used their agency creatively to resist these discourses. Nurses need to be mindful of how the hospital's hierarchical system tends to place nurses in a position of power, and how their authoritative position may positively or adversely affect the negotiation of patient care. © 2016 John Wiley & Sons Ltd.

  13. Evaluating Diabetes Care for Patients With Serious Mental Illness Using the Chronic Care Model

    Directory of Open Access Journals (Sweden)

    Kelly Vaez

    2017-10-01

    Full Text Available People with serious mental illness (SMI have a higher incidence of type 2 diabetes mellitus (T2DM and shorter life span due to medical health problems. The chronic care model (CCM has been used to improve care of patients with T2DM. One clinical organization that provided primary care to patients with SMI had excellent diabetes outcomes but did not have information on how they achieved those outcomes. Thus, we conducted a pilot study chart review for 30 patients with T2DM and SMI to determine how well the clinic’s system aligned with the overall CCM components and which components correlated with diabetes control. We also evaluated use of the CCM using the Assessment of Chronic Illness Care provider survey. Results showed that the clinic had an overall basic implementation level of the CCM, which allows opportunity for improvement. Two elements of the CCM were correlated with hemoglobin A 1C and both were in an unexpected direction: self-management support in the variable of percentage of visits that included patient-specific goal-setting ( r s = .52; P = .004 and delivery system design in the variable of number of nurse practitioner visits per study period ( r s = .43; P = .02. These findings suggest that the clinic may have made more concentrated efforts to manage diabetes for patients who were not in good diabetes control. Providers noted the influence of SMI and social service organization support on these patients’ clinical outcomes. The findings will be reexamined after a fuller implementation of the CCM to further improve management in this population.

  14. Beliefs about health, illness and acceptance of the limitations of chronic somatic disease inpeople with psoriasis

    Directory of Open Access Journals (Sweden)

    Joanna Miniszewska

    2014-09-01

    Full Text Available Introduction: Occurrence of a chronic disease means for an affected person significant changes in life and the disease itself can be seen in various categories. Assessment of the disease often affects its acceptance, which in turn affects the choice of coping strategies in dealing with it. Beliefs about psoriasis, a chronic skin disease that causes numerous psychosocial consequences, may influence its acceptance. Aim of the study: To determine the relationship between the way the disease is perceived, beliefs about having an impact on one’s own health, and acceptance of limitations of the disease. Material and methods: The study included 61 psoriasis patients. The following measures were employed: Acceptance of Illness Scale (AIS, Disease-Related Appraisals Scale (SOWC, Multidimensional Health Locus of Control Scale (MHLC, Self-Administered Psoriasis Area and Severity Index (SAPASI. Results: Sex and occurrence of the disease in family members did not differentiate the respondents in terms of the level of acceptance of the disease. Their perception of the disease as a threat, harm, obstacles and imbalances of life and treatment of health in terms of a chance, and severity of psoriasis measured with SAPASI correlated negatively with the disease acceptance. Internal health locus of control affected it positively. Two homogeneous subgroups were separated. Assessment of the disease in terms of an obstacle/loss, internal health locus of control and treatment of health in terms of a chance allow to predict the level of psoriasis acceptance. Conclusions: People’s beliefs relating to their own illness and their belief in having (or not an influence on their own health are associated with the level of accepting the disease. In other words, beliefs about a disease correlate with adaptation to it.

  15. Development and validation of the functional assessment of chronic illness therapy treatment satisfaction (FACIT TS) measures.

    Science.gov (United States)

    Peipert, John D; Beaumont, Jennifer L; Bode, Rita; Cella, Dave; Garcia, Sofia F; Hahn, Elizabeth A

    2014-04-01

    To develop and validate a new functional assessment of chronic illness therapy (FACIT) measure of satisfaction with treatment for chronic illnesses such as cancer and HIV/AIDS. To define domains and generate items, a literature review informed creation of semi-structured interview guides for patients and an international expert panel of clinicians and researchers. Patients and experts also rated 15 areas of satisfaction for relevance. The final list of items underwent further refinement by the original expert panel and a new group of clinical experts. Items were tested in four studies (primarily lung cancer) and data were pooled for analysis. Exploratory and confirmatory factor analyses (CFA), and item response theory modeling were conducted to evaluate dimensionality. Internal consistency reliability and test-retest reliability were both evaluated. Validity was evaluated by correlating the FACIT subscale scores and measures of comparable concepts and by testing the scales' ability to distinguish people according to their overall treatment satisfaction. Two instruments were created: the FACIT TS-general (G), an overall evaluation of current treatment, and the FACIT TS-patient satisfaction (PS), a measure of patient satisfaction. CFA results were not optimal for a five-factor solution for PS. Internal consistency reliability met psychometric standards (≥0.70) for all PS subscales. Construct validity was established for the PS subscales: Physician Communication, Treatment Staff Communication, Technical Competence, Confidence and Trust, and Nurse Communication. The two instruments generated here offer a new way to assess several key dimensions of patient satisfaction with treatment, especially for people with lung cancer.

  16. Prospective impact of illness uncertainty on outcomes in chronic lung disease.

    Science.gov (United States)

    Hoth, Karin F; Wamboldt, Frederick S; Strand, Matthew; Ford, Dee W; Sandhaus, Robert A; Strange, Charlie; Bekelman, David B; Holm, Kristen E

    2013-11-01

    To determine which aspect of illness uncertainty (i.e., ambiguity or complexity) has a stronger association with psychological and clinical outcomes over a 2-year period among individuals with a genetic subtype of chronic obstructive pulmonary disease (COPD). Ambiguity reflects uncertainty about physical cues and symptoms, and complexity reflects uncertainty about treatment and the medical system. Four-hundred and 7 individuals with alpha-1 antitrypsin deficiency-associated COPD completed questionnaires at baseline, 1- and 2-year follow-up. Uncertainty was measured using the Mishel Uncertainty in Illness Scale. Outcomes were measured using the Hospital Anxiety and Depression Scale, St. George's Respiratory Questionnaire, and MMRC Dyspnea Scale. Ambiguity and complexity were examined as predictors of depressive symptoms, anxiety, quality of life, and breathlessness using linear mixed models adjusting for demographic and health characteristics. Ambiguity was associated with more depressive symptoms (b = 0.09, SE = 0.02, p life (b = 0.57, SE = 0.10, p life, and breathlessness. Thus, ambiguity should be targeted in psychosocial interventions. Time since diagnosis did not affect the association between ambiguity and outcomes, suggesting that the impact of ambiguity is equally strong throughout the course of COPD.

  17. Patient outcomes for the chronically critically ill: special care unit versus intensive care unit.

    Science.gov (United States)

    Rudy, E B; Daly, B J; Douglas, S; Montenegro, H D; Song, R; Dyer, M A

    1995-01-01

    The purpose of this study was to compare the effects of a low-technology environment of care and a nurse case management case delivery system (special care unit, SCU) with the traditional high-technology environment (ICU) and primary nursing care delivery system on the patient outcomes of length of stay, mortality, readmission, complications, satisfaction, and cost. A sample of 220 chronically critically ill patients were randomly assigned to either the SCU (n = 145) or the ICU (n = 75). Few significant differences were found between the two groups in length of stay, mortality, or complications. However, the findings showed significant cost savings in the SCU group in the charges accrued during the study period and in the charges and costs to produce a survivor. The average total cost of delivering care was $5,000 less per patient in the SCU than in the traditional ICU. In addition, the cost to produce a survivor was $19,000 less in the SCU. Results from this 4-year clinical trial demonstrate that nurse case managers in a SCU setting can produce patient outcomes equal to or better than those in the traditional ICU care environment for long-term critically ill patients.

  18. The "cruel radiance of what is": helping couples live with chronic illness.

    Science.gov (United States)

    Weingarten, Kaethe

    2013-03-01

    The threat of no longer being the person one wants to be hovers over each ill person and plays out relationally. The dynamic interplay of this experience of self-loss and other-loss (Roos, 2002; Weingarten, 2012) has a significant impact on couples, both of whom may come to have both experiences. In this article, I focus on the couples' experience of self- and other-loss in the context of chronic illness, in which one person's experience flows into and informs the other's. In particular, I describe how asymmetric acknowledgment of self-loss and other-loss adds to the misery of couples who are already challenged by poor health. Physical pain also makes dealing with self- and other-loss harder. Therapists can serve couples better if they take a fully collaborative stance; appreciate the dilemmas of witnessing; help couples distinguish new trauma from retraumatization and fear; work with the weaver's dilemma and the boatman's plight (Weingarten, 2012); and are comfortable with discussion of end of life issues. © FPI, Inc.

  19. Gratitude uniquely predicts lower depression in chronic illness populations: A longitudinal study of inflammatory bowel disease and arthritis.

    Science.gov (United States)

    Sirois, Fuschia M; Wood, Alex M

    2017-02-01

    Although gratitude has been identified as a key clinically relevant trait for improving well-being, it is understudied within medical populations. The current study addressed this gap and extended previous and limited cross-sectional research by examining the longitudinal associations of gratitude to depression in 2 chronic illness samples, arthritis and inflammatory bowel disease (IBD). Two chronic illness samples, arthritis (N = 423) and IBD (N = 427), completed online surveys at Time 1 (T1). One hundred sixty-three people with arthritis and 144 people with IBD completed the 6-month follow-up survey (T2). Depression, gratitude, illness cognitions, perceived stress, social support, and disease-related variables were assessed at T1 and T2. At T2, 57.2% of the arthritis sample and 53.4% of the IBD sample met the cut off scores for significant depression. T1 gratitude was negatively associated with depressive symptoms at T1 and T2 in both samples (rs from -.43 to -.50). Regression analyses revealed that T1 gratitude remained a significant and unique predictor of lower T2 depression after controlling for T1 depression, relevant demographic variables, illness cognitions, changes in illness-relevant variables, and another positive psychological construct, thriving, in both samples. As the first investigation of the longitudinal associations of gratitude to psychological well-being in the context of chronic illness, the current study provides important evidence for the relevance of gratitude for health-related clinical populations. Further intervention-based research is warranted to more fully understand the potential benefits of gratitude for adjustment to chronic illness. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

  20. Effectiveness of LISTEN on loneliness, neuroimmunological stress response, psychosocial functioning, quality of life, and physical health measures of chronic illness

    Directory of Open Access Journals (Sweden)

    Laurie A. Theeke

    2016-09-01

    Conclusions: LISTEN can effectively diminish loneliness and decrease the systolic blood pressure in community-dwelling, chronically ill, older adults. Results indicate that this population, if left with untreated loneliness, may experience functional impairment over a period as short as 4 months. Further studies on LISTEN are needed with larger samples, in varied populations, and over longer periods of time to assess the long-term effects of diminishing loneliness in multiple chronic conditions.

  1. Prescribing Antidepressants and Benzodiazepines in the Netherlands: Is Chronic Physical Illness Involved?

    Directory of Open Access Journals (Sweden)

    Jacques Th. M. van Eijk

    2010-01-01

    Full Text Available In this study we assessed differences in new and repeat prescriptions of psycho-tropics between patients receiving prescriptions for drugs to treat a common chronic disease and people without such prescriptions. The study used the databases of two Dutch health insurance companies (3 million people. We selected all Dutch men and women aged 45 and older who were registered for six consecutive years (1999–2004. Our analyses both found a consistent relation between psycho-tropics on the one hand and physical illness on the other. People with multi-morbidity were prescribed these drugs most often, especially men and those younger than 65. Epidemiological studies showed a prevalence of depression among people with multi-morbidity to be twice as high as among people without such conditions. According to recent guidelines non-drug treatment may be the first therapy option for patients with non severe depression. If prescribed for a long time, benzodiazepine prescriptions are especially known to be addictive. Our data raise the question to what extent patients with a chronic physical disease suffering from co-occurring mental problems are prescribed psycho-tropics in accord with the guidelines that also advise mental support in case of non severe mental problems. Further research can answer this important question.

  2. Interactions with parents and friends among chronically ill children: examining social networks.

    Science.gov (United States)

    Herzer, Michele; Umfress, Kris; Aljadeff, Gabriel; Ghai, Kanika; Zakowski, Sandra G

    2009-12-01

    Children with medical conditions often experience a combination of positive and negative social interactions with parents and friends. Adult research examining cross-domain buffering effects has documented that supportive social ties can make up for shortcomings in other social relationships. This study examined whether negative effects of strained relationships with loved ones can be buffered when children feel supported by individuals in different support networks (i.e., cross-domain buffering effects). Children with Type I diabetes (n = 56), chronic asthma (n = 54), and cystic fibrosis (n = 17) completed questionnaires during an outpatient hospital visit that assessed perceptions of support and strain from parents and friends, quality of life, self-concept, and emotional/behavioral difficulties. Parental strain was conceptualized as parental overprotection and parental rejection. Hierarchical regression analyses showed that friend support buffered the adverse effects of parental strain on child quality of life, self-concept, and emotional/behavioral difficulties. Interestingly, parental support did not buffer the negative effects of experiencing strained relationships with friends; only main effects on outcome were found. These findings partially support our hypotheses of cross-domain buffering. In this study, friendships were a protective factor for children who experienced strained relationships with parents. In contrast, although parent support had a direct impact on child outcome, it did not make up for feeling rejected by friends. Because close relationships are often strained during medical stressors, findings underscore the importance of promoting social connectedness in chronically ill children to maximize opportunities for experiencing positive social relationships.

  3. The impact of experiential avoidance on the relations between illness representations, pain catastrophising and pain interference in chronic pain.

    Science.gov (United States)

    Karademas, Evangelos C; Karekla, Maria; Flouri, Magdalini; Vasiliou, Vasilis S; Kasinopoulos, Orestis; Papacostas, Savvas S

    2017-12-01

    The aim of this study was to examine the effects of experiential avoidance (EA) on the indirect relationship of chronic pain patients' illness representations to pain interference, through pain catastrophising Design and main outcome measure: The sample consisted of 162 patients diagnosed with an arthritis-related or a musculoskeletal disorder. The effects of EA on the pathway between illness representations, pain catastrophising and pain interference were examined with PROCESS, a computational tool for SPSS Results: After controlling for patient and illness-related variables and pain severity, the 'illness representations-pain catastrophising-pain interference' pathway was interrupted at the higher levels of EA. The reason was that, at the high levels of EA, either the relation of illness representations to pain catastrophising or the relation of pain catastrophising to pain interference was not statistically significant. The findings indicate that EA is not a generalised negative response to highly aversive conditions, at least as far as the factors examined in this study are concerned. EA may rather reflect a coping reaction, the impact of which depends on its specific interactions with the other aspects of the self-regulation mechanism. At least in chronic pain, EA should become the focus of potential intervention only when its interaction with the illness-related self-regulation mechanism results in negative outcomes.

  4. Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review.

    Science.gov (United States)

    Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo; Husted, Gitte R

    2017-01-01

    This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient-doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns. © The Author(s) 2016.

  5. Childhood trauma and chronic illness in adulthood: mental health and socioeconomic status as explanatory factors and buffers.

    Science.gov (United States)

    Mock, Steven E; Arai, Susan M

    2010-01-01

    Experiences of traumatic events in childhood have been shown to have long-term consequences for health in adulthood. With data from the 2005 Canadian Community Health Survey we take a life course perspective of cumulative disadvantage and examine the potential role of mental health and socioeconomic status in adulthood as multiple mediators of the link between childhood trauma and chronic illness in adulthood. Mental health and socioeconomic status are also tested as buffers against the typically adverse consequences of childhood trauma. The results suggest mental health and socioeconomic status partially explain the association of childhood trauma with chronic illness in adulthood, with mental health showing a stronger effect. In addition, an analysis of the interactions suggested higher socioeconomic status is a potential protective factor for those with a history of trauma. Results also suggest cumulative disadvantage following trauma may lead to chronic illness and suggest the need for public health expenditures on resources such as counseling and income supports to prevent or reduce psychological harm and chronic illness resulting from traumatic events.

  6. Childhood trauma and chronic illness in adulthood: mental health and socioeconomic status as explanatory factors and buffers

    Directory of Open Access Journals (Sweden)

    Steven E Mock

    2011-01-01

    Full Text Available Experiences of traumatic events in childhood have been shown to have long-term consequences for health in adulthood. With data from the 2005 Canadian Community Health Survey we take a life course perspective of cumulative disadvantage and examine the potential role of mental health and socioeconomic status in adulthood as multiple mediators of the link between childhood trauma and chronic illness in adulthood. Mental health and socioeconomic status are also tested as buffers against the typically adverse consequences of childhood trauma. The results suggest mental health and socioeconomic status partially explain the association of childhood trauma with chronic illness in adulthood, with mental health showing a stronger effect. In addition, an analysis of the interactions suggested higher socioeconomic status is a potential protective factor for those with a history of trauma. Results also suggest cumulative disadvantage following trauma may lead to chronic illness and suggest the need for public health expenditures on resources such as counseling and income supports to prevent or reduce psychological harm and chronic illness resulting from traumatic events.

  7. Quality of Life and Psychosocial Adaptation to Chronic Illness and Disability: Preliminary Analysis of a Conceptual and Theoretical Synthesis

    Science.gov (United States)

    Bishop, Malachy

    2005-01-01

    This article describes and presents an initial analysis of a quality-of-life?based model of psychosocial adaptation to chronic illness and disability. This model, termed disability centrality, represents a conceptual and theoretical synthesis of several existing theories and models, drawn from the quality-of life, rehabilitation counseling, and…

  8. Rehabilitation Counselor Preparation to Work with LGBTQ Persons Living with Chronic Illness/Disability: A Qualitative Content Analysis

    Science.gov (United States)

    Dispenza, Franco; Elston, Nikki C.; Huffstead, Mary E.; Suttles, Mackenzie G.; Golubovic, Nedeljko

    2017-01-01

    Purpose: To identify meaningful educative experiences that contributed to the development of rehabilitation counselors' abilities to provide effective rehabilitation counseling services to lesbian, gay, bisexual, transgender, and queer (LGBTQ) persons living with chronic illness/disabilities (CID). Method: This was a secondary analysis of a larger…

  9. A cognitive behavioral based group intervention for children with a chronic illness and their parents: a multicentre randomized controlled trial

    NARCIS (Netherlands)

    Scholten, L.; Willemen, A.M.; Grootenhuis, M.A.; Maurice-Stam, H.; Schuengel, C.; Last, B.F.

    2011-01-01

    Coping with a chronic illness (CI) challenges children's psychosocial functioning and wellbeing. Cognitive-behavioral intervention programs that focus on teaching the active use of coping strategies may prevent children with CI from developing psychosocial problems. Involvement of parents in the

  10. [Effects of a Multi-disciplinary Approached, Empowerment Theory Based Self-management Intervention in Older Adults with Chronic Illness].

    Science.gov (United States)

    Park, Chorong; Song, Misoon; Cho, Belong; Lim, Jaeyoung; Song, Wook; Chang, Heekyung; Park, Yeon-Hwan

    2015-04-01

    The purpose of this study was to develop a multi-disciplinary self-management intervention based on empowerment theory and to evaluate the effectiveness of the intervention for older adults with chronic illness. A randomized controlled trial design was used with 43 Korean older adults with chronic illness (Experimental group=22, Control group=21). The intervention consisted of two phases: (1) 8-week multi-disciplinary, team guided, group-based health education, exercise session, and individual empowerment counseling, (2) 16-week self-help group activities including weekly exercise and group discussion to maintain acquired self-management skills and problem-solving skills. Baseline, 8-week, and 24-week assessments measured health empowerment, exercise self-efficacy, physical activity, and physical function. Health empowerment, physical activity, and physical function in the experimental group increased significantly compared to the control group over time. Exercise self-efficacy significantly increased in experimental group over time but there was no significant difference between the two groups. The self-management program based on empowerment theory improved health empowerment, physical activity, and physical function in older adults. The study finding suggests that a health empowerment strategy may be an effective approach for older adults with multiple chronic illnesses in terms of achieving a sense of control over their chronic illness and actively engaging self-management.

  11. The impacts of using community health volunteers to coach medication safety behaviors among rural elders with chronic illnesses.

    Science.gov (United States)

    Wang, Chi-Jane; Fetzer, Susan J; Yang, Yi-Ching; Wang, Jing-Jy

    2013-01-01

    It is a challenge for rural health professionals to promote medication safety among older adults taking multiple medications. A volunteer coaching program to promote medication safety among rural elders with chronic illnesses was designed and evaluated. A community-based interventional study randomly assigned 62 rural elders with at least two chronic illnesses to routine care plus volunteer coaching or routine care alone. The volunteer coaching group received a medication safety program, including a coach and reminders by well-trained volunteers, as well as three home visits and five telephone calls over a two-month period. All the subjects received routine medication safety instructions for their chronic illnesses. The program was evaluated using pre- and post-tests of knowledge, attitude and behaviors with regard to medication safety. Results show the volunteer coaching group improved their knowledge of medication safety, but there was no change in attitude after the two-month study period. Moreover, the group demonstrated three improved medication safety behaviors compared to the routine care group. The volunteer coaching program and instructions with pictorial aids can provide a reference for community health professionals who wish to improve the medication safety of chronically ill elders. Copyright © 2013 Mosby, Inc. All rights reserved.

  12. Separate and joint effects of physical and mental health on participation of people with somatic chronic illness.

    NARCIS (Netherlands)

    Jansen, D.L.; Rijken, M.

    2011-01-01

    Aim: To examine the extent to which people with a somatic chronic illness participate in paid jobs, volunteer work, informal care and social activities, and to investigate the separate and joint effects of physical and mental health on participation. Background. Compared with healthy people, people

  13. Opening the Door: The Experience of Chronic Critical Illness in a Long-Term Acute Care Hospital.

    Science.gov (United States)

    Lamas, Daniela J; Owens, Robert L; Nace, R Nicholas; Massaro, Anthony F; Pertsch, Nathan J; Gass, Jonathon; Bernacki, Rachelle E; Block, Susan D

    2017-04-01

    Chronically critically ill patients have recurrent infections, organ dysfunction, and at least half die within 1 year. They are frequently cared for in long-term acute care hospitals, yet little is known about their experience in this setting. Our objective was to explore the understanding and expectations and goals of these patients and surrogates. We conducted semi-structured interviews with chronically critically ill long-term acute care hospital patients or surrogates. Conversations were recorded, transcribed, and analyzed. One long-term acute care hospital. Chronically critically ill patients, defined by tracheotomy for prolonged mechanical ventilation, or surrogates. Semi-structured conversation about quality of life, expectations, and planning for setbacks. A total of 50 subjects (30 patients and 20 surrogates) were enrolled. Thematic analyses demonstrated: 1) poor quality of life for patients; 2) surrogate stress and anxiety; 3) optimistic health expectations; 4) poor planning for medical setbacks; and 5) disruptive care transitions. Nearly 80% of patient and their surrogate decision makers identified going home as a goal; 38% were at home at 1 year. Our study describes the experience of chronically critically ill patients and surrogates in an long-term acute care hospital and the feasibility of patient-focused research in this setting. Our findings indicate overly optimistic expectations about return home and unmet palliative care needs, suggesting the need for integration of palliative care within the long-term acute care hospital. Further research is also needed to more fully understand the challenges of this growing population of ICU survivors.

  14. Access to Mobile Communication Technology and Willingness to Participate in Automated Telemedicine Calls Among Chronically Ill Patients in Honduras

    Science.gov (United States)

    Mendoza-Avelares, Milton O.; Milton, Evan C.; Lange, Ilta; Fajardo, Roosevelt

    2010-01-01

    Abstract Objectives: Patients in underdeveloped countries may be left behind by advances in telehealthcare. We surveyed chronically ill patients with low incomes in Honduras to measure their use of mobile technologies and willingness to participate in mobile disease management support. Materials and Methods: 624 chronically ill primary care patients in Honduras were surveyed. We examined variation in telephone access across groups defined by patients' sociodemographic characteristics, diagnoses, and access to care. Logistic regression was used to identify independent correlates of patients' interest in automated telephonic support for disease management. Results: Participants had limited education (mean 4.8 years), and 65% were unemployed. Eighty-four percent had telephone access, and 78% had cell phones. Most respondents had voicemail (61%) and text messaging (58%). Mobile technologies were particularly common among patients who had to forego clinic visits and medications due to cost concerns (each p 80%) reported that they would be willing to receive automated calls focused on appointment reminders, medication adherence, health status monitoring, and self-care education. Patients were more likely to be willing to participate in automated telemedicine services if they had to cancel a clinic appointment due to transportation problems or forego medication due to cost pressures. Conclusions: Even in this poor region of Honduras, most chronically ill patients have access to mobile technology, and most are willing to participate in automated telephone disease management support. Given barriers to in-person care, new models of mobile healthcare should be developed for chronically ill patients in developing countries. PMID:21062234

  15. Adolescent vulnerability to cardiovascular consequences of chronic social stress: Immediate and long-term effects of social isolation during adolescence.

    Science.gov (United States)

    Cruz, Fábio C; Duarte, Josiane O; Leão, Rodrigo M; Hummel, Luiz F V; Planeta, Cleopatra S; Crestani, Carlos C

    2016-01-01

    It has been demonstrated that disruption of social bonds and perceived isolation (loneliness) are associated with an increased risk of cardiovascular morbidity and mortality. Adolescence is proposed as a period of vulnerability to stress. Nevertheless, the impact of chronic social stress during this ontogenic period in cardiovascular function is poorly understood. Therefore, the purpose of this study was to compare the impact in cardiovascular function of social isolation for 3 weeks in adolescent and adult male rats. Also, the long-term effects of social isolation during adolescence were investigated longitudinally. Social isolation reduced body weight in adolescent, but not in adult animals. Disruption of social bonds during adolescence increased arterial pressure without affecting heart rate and pulse pressure (PP). Nevertheless, social isolation in adulthood reduced systolic arterial pressure and increased diastolic arterial pressure, which in turn decreased PP without affecting mean arterial pressure. Cardiovascular changes in adolescents, but not adults, were followed by facilitation of both baroreflex sensitivity and vascular reactivity to the vasodilator agent acetylcholine. Vascular responsiveness to either the vasodilator agent sodium nitroprusside or the vasoconstrictor agent phenylephrine was not affected by social isolation. Except for the changes in body weight and baroreflex sensitivity, all alterations evoked by social isolation during adolescence were reversed in adulthood after moving animals from isolated to collective housing. These findings suggest a vulnerability of adolescents to the effects of chronic social isolation in cardiovascular function. However, results indicate minimal cardiovascular consequences in adulthood of disruption of social bonds during adolescence. © 2015 Wiley Periodicals, Inc.

  16. The use of information and communication technology to meet chronically ill patients' needs when living at home.

    Science.gov (United States)

    Skär, Lisa; Söderberg, Siv

    2011-01-01

    The aim of the study was to describe influences, benefits, and limitations in using information and communication technology to meet chronically ill patients' needs when living at home. The study is a descriptive, exploratory designed pilot study and the intervention was performed using an electronic communication program enabling communication between ill persons and the district nurse in real time by web cam pictures and sound. The participant used the programme once or twice a week from February to August 2008. Data were collected by means of repeated interviews and logbook notes, and were subjected to qualitative content analysis. The results showed that all participants appreciated being able to communicate regardless of time and place and their experiences of using information and communication technology revealed that it created feelings of safety and security. The information and communication technology became a tool in their communication and improved nursing care among seriously chronically ill persons living at home.

  17. Nutritional Needs of the Child with a Handicap or Chronic Illness. Manual II: Clinical Nutrition. Presentations from a National Interdisciplinary Symposium.

    Science.gov (United States)

    Ekvall, Shirley M.; Wheby, Elizabeth A.

    The following papers were presented at a symposium on clinical nutrition for the child who is chronically ill or handicapped: (1) "Food Allergy"; (2) "Anemia and the Chronically Ill or Handicapped Child"; (3) "Nutrition and Neurotransmitters--Clinical Implications"; (4) "The Importance of Lipid Type in the Diet after Burn Injury"; (5) "Advances of…

  18. Lexis diagram and illness-death model: simulating populations in chronic disease epidemiology.

    Directory of Open Access Journals (Sweden)

    Ralph Brinks

    Full Text Available Chronic diseases impose a tremendous global health problem of the 21st century. Epidemiological and public health models help to gain insight into the distribution and burden of chronic diseases. Moreover, the models may help to plan appropriate interventions against risk factors. To provide accurate results, models often need to take into account three different time-scales: calendar time, age, and duration since the onset of the disease. Incidence and mortality often change with age and calendar time. In many diseases such as, for example, diabetes and dementia, the mortality of the diseased persons additionally depends on the duration of the disease. The aim of this work is to describe an algorithm and a flexible software framework for the simulation of populations moving in an illness-death model that describes the epidemiology of a chronic disease in the face of the different times-scales. We set up a discrete event simulation in continuous time involving competing risks using the freely available statistical software R. Relevant events are birth, the onset (or diagnosis of the disease and death with or without the disease. The Lexis diagram keeps track of the different time-scales. Input data are birth rates, incidence and mortality rates, which can be given as numerical values on a grid. The algorithm manages the complex interplay between the rates and the different time-scales. As a result, for each subject in the simulated population, the algorithm provides the calendar time of birth, the age of onset of the disease (if the subject contracts the disease and the age at death. By this means, the impact of interventions may be estimated and compared.

  19. Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study

    Directory of Open Access Journals (Sweden)

    Aspin Clive

    2012-06-01

    Full Text Available Abstract Background Aboriginal and Torres Strait Islander people with chronic illness confront multiple challenges that contribute to their poor health outcomes, and to the health disparities that exist in Australian society. This study aimed to identify barriers and facilitators to care and support for Aboriginal and Torres Strait Islander people with chronic illness. Methods Face-to-face in-depth interviews were conducted with Aboriginal and Torres Strait Islander people with diabetes, chronic heart failure or chronic obstructive pulmonary disease (n-16 and family carers (n = 3. Interviews were transcribed verbatim and the transcripts were analysed using content analysis. Recurrent themes were identified and these were used to inform the key findings of the study. Results Participants reported both negative and positive influences that affected their health and well-being. Among the negative influences, they identified poor access to culturally appropriate health services, dislocation from cultural support systems, exposure to racism, poor communication with health care professionals and economic hardship. As a counter to these, participants pointed to cultural and traditional knowledge as well as insights from their own experiences. Participants said that while they often felt overwhelmed and confused by the burden of chronic illness, they drew strength from being part of an Aboriginal community, having regular and ongoing access to primary health care, and being well-connected to a supportive family network. Within this context, elders played an important role in increasing people’s awareness of the impact of chronic illness on people and communities. Conclusions Our study indicated that non-Indigenous health services struggled to meet the needs of Aboriginal and Torres Strait Islander people with chronic illness. To address their complex needs, health services could gain considerably by recognising that Aboriginal and Torres Strait

  20. Chronic Illnesses and Depressive Symptoms Among Older People: Functional Limitations as a Mediator and Self-Perceptions of Aging as a Moderator.

    Science.gov (United States)

    Han, Jina

    2017-05-01

    This research examined the mediation of functional limitations in the relationship between chronic illnesses and depressive symptoms among older Americans along with tests for the moderation of self-perceptions of aging. Data from the Health and Retirement Study (2008, 2010, and 2012) were used. Longitudinal mediation models were tested using a sample of 3,382 Americans who responded to psychosocial questions and were over 65 years old in 2008. Functional limitations mediated the linkage between chronic illnesses and depressive symptoms. Negative self-perceptions of aging exacerbated the effects of chronic illnesses on depressive symptoms. Health care professionals should be aware of depressive symptoms in older adults reporting chronic illnesses and particularly in those reporting functional limitations. To decrease the risk of depressive symptoms caused by chronic illnesses, negative self-perceptions of aging may need to be challenged.

  1. A Multimodal Evaluation of the Comparative Efficacy of Yoga versus a Patient Centered Support Group for Treating Chronic Pain in Gulf War Illness

    Science.gov (United States)

    2016-10-01

    Treating Chronic Pain in Gulf War Illness PRINCIPAL INVESTIGATOR: Peter Bayley, PhD RECIPIENT: Palo Alto Veterens Institute for Research Palo Alto, CA...Centered Support Group for Treating Chronic Pain in Gulf War Illness 5a. CONTRACT NUMBER 5b. GRANT NUMBER 5c. PROGRAM ELEMENT NUMBER 6. AUTHOR(S...with Gulf War Illness (GWI). A secondary objective is to provide veterans with skills in yoga breathing, postures, and meditation that can be used to

  2. Family functioning in families of first-episode psychosis patients as compared to chronic mentally ill patients and healthy controls.

    Science.gov (United States)

    Koutra, Katerina; Triliva, Sofia; Roumeliotaki, Theano; Stefanakis, Zacharias; Basta, Maria; Lionis, Christos; Vgontzas, Alexandros N

    2014-11-30

    The present study aimed to investigate possible differences in family environment among patients experiencing their First Episode of Psychosis (FEP), chronic patients and controls. Family cohesion and flexibility (FACES-IV) and psychological distress (GHQ-28) were evaluated in families of 50 FEP and 50 chronic patients, as well as 50 controls, whereas expressed emotion (FQ) and family burden (FBS) were assessed in families of FEP and chronic patients. Multivariable linear regression analysis, adjusted for confounders, indicated impaired cohesion and flexibility for families of FEP patients compared to controls, and lower scores for families of chronic patients compared to those of FEP patients. Caregivers of chronic patients scored significantly higher in criticism, and reported higher burden and psychological distress than those of FEP patients. Our findings suggest that unbalanced levels of cohesion and flexibility, high criticism and burden appeared to be the outcome of psychosis and not risk factors triggering the onset of the illness. Furthermore, emotional over-involvement both in terms of positive (i.e. concern) and negative behaviors (i.e. overprotection) is prevalent in Greek families. Psychoeducational interventions from the early stages of the illness should be considered to promote caregivers' awareness regarding the patients' illness, which in turn, may ameliorate dysfunctional family interactions. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

  3. Divorce and Childhood Chronic Illness: A Grounded Theory of Trust, Gender, and Third-Party Care Providers.

    Science.gov (United States)

    Russell, Luke T; Coleman, Marilyn; Ganong, Lawrence H; Gayer, Debra

    2016-05-01

    Divorced parents face distinct challenges in providing care for chronically ill children. Children's residence in two households necessitates the development of family-specific strategies to ensure coparents' supervision of regimen adherence and the management of children's health care. Utilizing a risk and resilience perspective, a grounded theory study was conducted with 14 divorced parents of children with chronic illnesses. The importance of trust, gender, and relationships with third-party care providers emerged as key themes related to the development of effective coparenting relationships for maintaining children's health. Divorced parents were best able to support the management of their children's chronic conditions when care providers operated as neutral third parties and intermediaries. Collaborative family care may require health care practitioners to avoid being drawn into contentious inter-parental conflicts. © The Author(s) 2016.

  4. Online information as support to the families of children and adolescents with chronic disease.

    Science.gov (United States)

    Mazza, Verônica de Azevedo; Lima, Vanessa Ferreira de; Carvalho, Ana Karoline da Silva; Weissheimer, Gisele; Soares, Larissa Gramazio

    2017-04-20

    To describe the use of online information as support to families of children and adolescents with chronic disease. This is an integrative review conducted in August 2015, with an online search in the following databases: PubMed, Biblioteca Virtual em Saúde, Cumulative Index to Nursing & Allied Health Literature, and Science Direct. Twelve studies were selected from the 293 studies found in the databases. After analysis, the following two categories emerged: Potentialities of the use of online information by families of children and adolescents with chronic disease, and Weaknesses of the use of online information by families of children and adolescents with chronic disease. The internet offers a wide range of information that helps families manage the care of children and adolescents with chronic diseases, but it also has characteristics that need to be analysed.

  5. Managed care and the delivery of primary care to the elderly and the chronically ill.

    Science.gov (United States)

    Wholey, D R; Burns, L R; Lavizzo-Mourey, R

    1998-06-01

    To analyze primary care staffing in HMOs and to review the literature on primary care organization and performance in managed care organizations, with an emphasis on the delivery of primary care to the elderly and chronically ill. Analysis of primary care staffing: InterStudy HMO census data on primary care (n = 1,956) and specialist (n = 1,777) physician staffing levels from 1991 through 1995. Primary care organization and performance for the chronically ill and elderly were analyzed using a review of published research. For the staffing-level models, the number of primary care and specialist physicians per 100,000 enrollees was regressed on HMO characteristics (HMO type [group, staff, network, mixed], HMO enrollment, federal qualification, profit status, national affiliation) and community characteristics (per capita income, population density, service area size, HMO competition). For the review of organization and performance, literature published was summarized in a tabular format. The analysis of physician staffing shows that group and staff HMOs have fewer primary care and specialist physicians per 100,000 enrollees than do network and mixed HMOs, which have fewer than IPAs. Larger HMOs use fewer physicians per 100,000 enrollees than smaller HMOs. Federally qualified HMOs have fewer primary care and specialist physicians per 100,000 enrollees. For-profit, nationally affiliated, and Blue Cross HMOs have more primary care and specialist physicians than do local HMOs. HMOs in areas with high per capita income have more PCPs per 100,000 and a greater proportion of PCPs in the panel. HMO penetration decreases the use of specialists, but the number of HMOs increases the use of primary care and specialist physicians in highly competitive markets. Under very competitive conditions, HMOs appear to compete by increasing access to both PCPs and specialists, with a greater emphasis on access to specialists. The review of research on HMO performance suggests that access

  6. Chronic Nicotine Treatment During Adolescence Attenuates the Effects of Acute Nicotine in Adult Contextual Fear Learning.

    Science.gov (United States)

    Holliday, Erica D; Gould, Thomas J

    2017-01-01

    Adolescent onset of nicotine abuse is correlated with worse chances at successful abstinence in adulthood. One reason for this may be due to enduring learning deficits resulting from nicotine use during adolescence. Previous work has indicated that chronic nicotine administration beginning in late adolescence (PND38) caused learning deficits in contextual fear when tested in adulthood. The purpose of this study was to determine if chronic nicotine treatment during adolescence would alter sensitivity to nicotine's cognitive enhancing properties in adulthood. C57BL/6J mice received saline or chronic nicotine (12.6mg/kg/day) during adolescence (postnatal day 38) or adulthood (postnatal day 54) for a period of 12 days. Following a 30-day protracted abstinence, mice received either an acute injection of saline or nicotine (0.045, 0.18, and 0.36mg/kg) prior to training and testing a mouse model of contextual fear. It was found that chronic nicotine administration in adult mice did not alter sensitivity to acute nicotine following a protracted abstinence. In adolescent mice, chronic nicotine administration disrupted adult learning and decreased sensitivity to acute nicotine in adulthood as only the highest dose tested (0.36mg/kg) was able to enhance contextual fear learning. These results suggest that adolescent nicotine exposure impairs learning in adulthood, which could increase the risk for continued nicotine use in adulthood by requiring administration of higher doses of nicotine to reverse learning impairments caused by adolescent nicotine exposure. Results from this study add to the growing body of literature suggesting chronic nicotine exposure during adolescence leads to impaired learning in adulthood and demonstrates that nicotine exposure during adolescence attenuates the cognitive enhancing effects of acute nicotine in adulthood, which suggests altered cholinergic function. © The Author 2016. Published by Oxford University Press on behalf of the Society for

  7. Severe mental illness and chronic kidney disease: a cross-sectional study in the United Kingdom

    Directory of Open Access Journals (Sweden)

    Iwagami M

    2018-04-01

    Full Text Available Masao Iwagami,1 Kathryn E Mansfield,1 Joseph F Hayes,2 Kate Walters,3 David PJ Osborn,2,4 Liam Smeeth,1 Dorothea Nitsch,1 Laurie A Tomlinson1 1Department of Non-Communicable Disease Epidemiology, London School of Hygiene and Tropical Medicine, London, UK; 2Division of Psychiatry, University College London, London, UK; 3Department of Primary Care and Population Health, University College London, London, UK; 4Camden and Islington NHS Foundation Trust, London, UK Objective: We investigated the burden of chronic kidney disease (CKD among patients with severe mental illness (SMI. Methods: We identified patients with SMI among all those aged 25–74 registered in the UK Clinical Practice Research Datalink as on March 31, 2014. We compared the prevalence of CKD (two measurements of estimated glomerular filtration rate <60 mL/min/1.73 m2 for ≥3 months and renal replacement therapy between patients with and without SMI. For patients with and without a history of lithium prescription separately, we used logistic regression to examine the association between SMI and CKD, adjusting for demographics, lifestyle characteristics, and known CKD risk factors. Results: The CKD prevalence was 14.6% among patients with SMI and a history of lithium prescription (n = 4,295, 3.3% among patients with SMI and no history of lithium prescription (n = 24,101, and 2.1% among patients without SMI (n = 2,387,988; P < 0.001. The prevalence of renal replacement therapy was 0.23%, 0.15%, and 0.11%, respectively (P = 0.012. Compared to patients without SMI, the fully adjusted odds ratio for CKD was 6.49 (95% CI 5.84–7.21 for patients with SMI and a history of lithium prescription and 1.45 (95% CI 1.34–1.58 for patients with SMI and no history of lithium prescription. The higher prevalence of CKD in patients with SMI may, in part, be explained by more frequent blood testing as compared to the general population. Conclusion: CKD is identified more commonly among

  8. Use of an electronic patient portal among the chronically ill: an observational study.

    Science.gov (United States)

    Riippa, Iiris; Linna, Miika; Rönkkö, Ilona; Kröger, Virpi

    2014-12-08

    Electronic patient portals may enhance effective interaction between the patient and the health care provider. To grasp the full potential of patient portals, health care providers need more knowledge on which patient groups prefer electronic services and how patients should be served through this channel. The objective of this study was to assess how chronically ill patients' state of health, comorbidities, and previous care are associated with their adoption and use of a patient portal. A total of 222 chronically ill patients, who were offered access to a patient portal with their health records and secure messaging with care professionals, were included in the study. Differences in the characteristics of non-users, viewers, and interactive users of the patient portal were analyzed before access to the portal. Patients' age, gender, diagnoses, levels of the relevant physiological measurements, health care contacts, and received physiological measurements were collected from the care provider's electronic health record. In addition, patient-reported health and patient activation were assessed by a survey. Despite the broad range of measures used to indicate the patients' state of health, the portal user groups differed only in their recorded diagnosis for hypertension, which was most common in the non-user group. However, there were significant differences in the amount of care received during the year before access to the portal. The non-user group had more nurse visits and more measurements of relevant physiological outcomes than viewers and interactive users. They also had fewer referrals to specialized care during the year before access to the portal than the two other groups. The viewers and the interactive users differed from each other significantly in the number of nurse calls received, the interactive users having more calls than the viewers. No significant differences in age, gender, or patient activation were detected between the user groups. Previous

  9. Feasibility of a multiple-choice mini mental state examination for chronically critically ill patients.

    Science.gov (United States)

    Miguélez, Marta; Merlani, Paolo; Gigon, Fabienne; Verdon, Mélanie; Annoni, Jean-Marie; Ricou, Bara

    2014-08-01

    Following treatment in an ICU, up to 70% of chronically critically ill patients present neurocognitive impairment that can have negative effects on their quality of life, daily activities, and return to work. The Mini Mental State Examination is a simple, widely used tool for neurocognitive assessment. Although of interest when evaluating ICU patients, the current version is restricted to patients who are able to speak. This study aimed to evaluate the feasibility of a visual, multiple-choice Mini Mental State Examination for ICU patients who are unable to speak. The multiple-choice Mini Mental State Examination and the standard Mini Mental State Examination were compared across three different speaking populations. The interrater and intrarater reliabilities of the multiple-choice Mini Mental State Examination were tested on both intubated and tracheostomized ICU patients. Mixed 36-bed ICU and neuropsychology department in a university hospital. Twenty-six healthy volunteers, 20 neurological patients, 46 ICU patients able to speak, and 30 intubated or tracheostomized ICU patients. None. Multiple-choice Mini Mental State Examination results correlated satisfactorily with standard Mini Mental State Examination results in all three speaking groups: healthy volunteers: intraclass correlation coefficient = 0.43 (95% CI, -0.18 to 0.62); neurology patients: 0.90 (95% CI, 0.82-0.95); and ICU patients able to speak: 0.86 (95% CI, 0.70-0.92). The interrater and intrarater reliabilities were good (0.95 [0.87-0.98] and 0.94 [0.31-0.99], respectively). In all populations, a Bland-Altman analysis showed systematically higher scores using the multiple-choice Mini Mental State Examination. Administration of the multiple-choice Mini Mental State Examination to ICU patients was straightforward and produced exploitable results comparable to those of the standard Mini Mental State Examination. It should be of interest for the assessment and monitoring of the neurocognitive

  10. The Detrimental Effects of Adolescents' Chronic Loneliness on Motivation and Emotion Regulation in Social Situations.

    Science.gov (United States)

    Vanhalst, Janne; Luyckx, Koen; Van Petegem, Stijn; Soenens, Bart

    2018-01-01

    In adolescence, when establishing and maintaining satisfying social relationships is a key developmental task, chronic loneliness is related to a host of negative outcomes. This study aimed at examining motivational and regulatory factors related to chronic loneliness. Specifically, this study investigated chronically lonely adolescents' responses to hypothetical vignettes of social inclusion and exclusion, thereby focusing on (a) adolescents' willingness and motivation to approach social inclusion and (b) emotion regulation strategies to deal with social exclusion. A total of 730 adolescents (Mage = 15.43 years, 72% female) participated in this four-wave study with annual loneliness assessments and hypothetical vignettes of social inclusion and exclusion at the final wave. After each social inclusion vignette, participants rated their willingness to accept the invitation for social inclusion and five types of motivation to approach the situation. After each social exclusion vignette, participants rated nine cognitive emotion regulation strategies. Compared to individuals following other trajectories, chronically lonely adolescents were less likely to accept invitations for social inclusion and the quality of their motivation for accepting such invitations was lower. Further, they were more likely to employ maladaptive emotion regulation strategies. In sum, this study adds significantly to understanding the motivational and regulatory processes that differentiate chronically lonely adolescents from adolescents following other trajectories.

  11. Chronic sleep reduction in adolescents with Delayed Sleep Phase Disorder and effects of melatonin treatment

    NARCIS (Netherlands)

    van Maanen, Annette; Dewald-Kaufmann, Julia F.; Smits, Marcel G.; Oort, Frans J.; Meijer, Anne Marie

    2013-01-01

    Homeostatic and circadian changes that occur during adolescence can result in chronic sleep reduction. This may particularly be true for adolescents with Delayed Sleep Phase Disorder (DSPD), which is associated with late Dim Light Melatonin Onset (DLMO). This study assessed the influence of

  12. Chronic childhood peer rejection is associated with heightened neural responses to social exclusion during adolescence.

    NARCIS (Netherlands)

    Will, G.J.; Van, Lier P.A.; Crone, E.A.; Guroglu, B.

    2016-01-01

    This functional Magnetic Resonance Imaging (fMRI) study examined subjective and neural responses to social exclusion in adolescents (age 12-15) who either had a stable accepted (n = 27; 14 males) or a chronic rejected (n = 19; 12 males) status among peers from age 6 to 12. Both groups of adolescents

  13. Effects of a Guided Internet-Delivered Self-Help Intervention for Adolescents With Chronic Pain.

    NARCIS (Netherlands)

    Voerman, J.S.; Remerie, S.; Westendorp, T.; Timman, R.; Busschbach, J.J.V.; Passchier, J.; de Klerk, C.

    2015-01-01

    Cognitive-behavioral therapy (CBT) is effective in reducing the frequency and intensity of chronic pain in adolescents. However, CBT seems not to be considered acceptable by all adolescents. The main aim of our study was therefore to evaluate the effects of guided Internet-delivered self-help for

  14. Coping and Depressive Symptoms in Adolescents with a Chronic Medical Condition: A Search for Intervention Targets

    Science.gov (United States)

    Kraaij, Vivian; Garnefski, Nadia

    2012-01-01

    The aim of the present study was to find relevant coping factors for the development of psychological intervention programs for adolescents with a chronic medical condition. A wide range of coping techniques were studied, including cognitive coping, behavioral coping and goal adjustment coping. A total of 176 adolescents participated. They were…

  15. Coping in adolescents and young adults with chronic digestive disorders: impact on school and leisure activities.

    NARCIS (Netherlands)

    Calsbeek, H.; Rijken, M.; Bekkers, M.J.T.M.; Berge Henegouwen, G.P. van; Dekker, J.

    2006-01-01

    Coping strategies were compared across adolescents and young adults with several chronic digestive disorders and healthy peers, and across age groups. Subsequently, the impact of coping on performance in school and leisure activities was investigated. Participants were adolescents and young adults

  16. Socioeconomic variation in the financial consequences of ill health for older people with chronic diseases: a systematic review.

    Science.gov (United States)

    Valtorta, Nicole K; Hanratty, Barbara

    2013-04-01

    Chronic disease has financial consequences for older adults, but it is unclear how this varies between conditions with different disease trajectories. The aim of this study was to review evidence on the financial burden associated with cancer, heart failure or stroke in older people, to identify those most at risk of financial adversity. We systematically searched nine databases for studies with data on the illness-related financial burden (objective), or on the perception of financial hardship (subjective), of older patients and/or their informal caregivers in high-income countries. We identified thirty-eight papers published in English between 1984 and 2012. Studies fell into three categories: those reporting direct, out of pocket, costs (medical and/or non-medical); studies of the indirect costs associated with illness (such as wage or income loss); and papers reporting general financial or economic burdens secondary to illness. Three out of four studies focused on people with cancer. More affluent people had greater out of pocket costs, but were less financially burdened by illness, compared with older adults from lower socioeconomic backgrounds. Disadvantaged patients and families were more likely to report experiences of financial hardship, and spend a higher proportion of their income on all expenses related to their diagnoses. This review illustrates how little is known about the financial adversity experienced by patients with some common chronic conditions. It raises the possibility that higher expenditure by more affluent older people may be creating inequalities in how chronic illness is experienced. The development of effective strategies for financial protection at older ages will require more information on who is affected and at which point in their illness trajectory. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

  17. Substance misuse and sexual function in adolescents with chronic diseases.

    Science.gov (United States)

    Araújo, Priscila; Carvalho, Márcio Guilherme Nunes; van Weelden, Marlon; Lourenço, Benito; Queiroz, Lígia Bruni; Silva, Clovis Artur

    2016-09-01

    To evaluate alcohol/tobacco and/or illicit drug misuse in Chronic Diseases (CDs). A cross-sectional study with 220 CDs adolescents and 110 healthy controls including: demographic/anthropometric data; puberty markers; modified questionnaire evaluating sexual function, alcohol/smoking/illicit drug misuse and bullying; and the physician-conducted CRAFFT (car/relax/alone/forget/friends/trouble) screen tool for substance abuse/dependence high risk. The frequencies of alcohol/tobacco and/or illicit drug use were similar in both groups (30% vs. 34%, p=0.529), likewise the frequencies of bullying (42% vs. 41%, p=0.905). Further analysis solely in CDs patients that used alcohol/tobacco/illicit drug versus those that did not use showed that the median current age [15 (11-18) vs. 14 (10-18) years, p<0.0001] and education years [9 (5-14) vs. 8 (3-12) years, p<0.0001] were significant higher in substance use group. The frequencies of Tanner 5 (p<0.0001), menarche (p<0.0001) and spermarche (p=0.001) were also significantly higher in patients with CDs that used alcohol/tobacco/illicit, likewise sexual activity (23% vs. 3%, p<0.0001). A trend of a low frequency of drug therapy was observed in patients that used substances (70% vs. 82%, p=0.051). A positive correlation was observed between CRAFFT score and current age in CD patients (p=0.005, r=+0.189) and controls (p=0.018, r=+0.226). A later age was evidenced in CDs patients that reported licit/ilicit drug misuse. In CDs adolescent, substance use was more likely to have sexual intercourse. Our study reinforces that these patients should be systematically screened by pediatricians for drug related health behavioral patterns. Copyright © 2015 Sociedade de Pediatria de São Paulo. Publicado por Elsevier Editora Ltda. All rights reserved.

  18. The association of obesity and school absenteeism attributed to illness or injury among adolescents in the United States, 2009.

    Science.gov (United States)

    Pan, Liping; Sherry, Bettylou; Park, Sohyun; Blanck, Heidi M

    2013-01-01

    School attendance can impact academic performance. Childhood obesity-related physical and psychosocial consequences are potentially associated with school absenteeism. Thus, we examined the association between school absenteeism attributed to illness or injury and obesity among adolescents aged 12-17 years. We used a weighted sample of 3,470 U.S. adolescents from the 2009 National Health Interview Survey. School absenteeism was measured from the parent-reported number of sick days taken in the preceding 12 months. Body mass index was calculated from parent-reported weight and height. Weight status was classified based on the sex-specific body mass index-for-age percentile defined by the CDC growth charts. Poisson regression was conducted to examine the association between school absenteeism and weight status, controlling for selected sociodemographic characteristics and disease status. The mean number of annual sick days was 3.9 days overall; 3.4 days among normal-weight, 4.4 days among overweight, and 4.5 days among obese adolescents. Obese adolescents had a higher proportion of missing ≥4 days of school per year than adolescents of normal weight. Our multivariate analyses found that compared with adolescents of normal weight, overweight and obese adolescents had greater than one-third more sick days annually (rate ratio = 1.36 for overweight and 1.37 for obese adolescents). Overweight and obese adolescents had 36% and 37% more sick days, respectively, than adolescents of normal weight. The results suggest another potential aspect of obesity prevention and reduction efforts among children and families is to improve children's school attendance. Published by Elsevier Inc.

  19. [Family dynamics and chronic illness: children with diabetes in the context of their families].

    Science.gov (United States)

    Wirlach-Bartosik, S; Schubert, M T; Freilinger, M; Schober, E

    2005-01-01

    The present study is based on the assumption of an interaction between family functioning and chronic illness. Using a systemic approach, the intra-familial situation of families with a diabetes-affected child is examined. 44 families were evaluated using a family diagnostic instrument ("Familienbögen") and compared with 31 control families with a healthy child. Furthermore, the study looked at the influence of the level of family functioning on glycemic control, as measured by HbA1c values, and vice versa. Families with a child affected by diabetes showed significantly more dysfunctional domains and higher discrepancies of the ratings in the family diagnostic instrument (p familial dynamics, it may, at the same time, offer opportunities for an improvement of family relationships. However, if physiological parameters deteriorate in the child (poor glycemic control), family problems seem to become less important. Success in the treatment of diabetes patients should therefore not only be measured by the quality of glycemic control, but also by considering psychological factors and aspects of family dynamics.

  20. Peer victimization and subjective health among students reporting disability or chronic illness in 11 Western countries.

    Science.gov (United States)

    Sentenac, Mariane; Gavin, Aoife; Gabhainn, Saoirse Nic; Molcho, Michal; Due, Pernille; Ravens-Sieberer, Ulrike; Matos, Margarida Gaspar de; Malkowska-Szkutnik, Agnieszka; Gobina, Inese; Vollebergh, Wilma; Arnaud, Catherine; Godeau, Emmanuelle

    2013-06-01

    To compare the strength of the association between peer victimization at school and subjective health according to the disability or chronic illness (D/CI) status of students across countries. This study used data from 55 030 students aged 11, 13 and 15 years from 11 countries participating in the 2005-06 Health Behaviour in School-aged Children survey. Self-completed questionnaires were administered in classrooms. Multivariate models of logistic regression (controlled for confounding factors and countries) were used to investigate differences in the association between peer victimization and poor subjective health according to the D/CI status. Overall, 13.5% of the students reported having been bullied at least two or three times a month. The percentage of victims was significantly higher among those reporting D/CI than among others in all countries studied. Victims of bullying were more likely to report poor self-rated health, low life satisfaction and multiple health complaints. However, there were no differences in the associations between peer victimization and subjective health indicators according to the D/CI status. In all countries studied, students reporting D/CI were more likely to report being victims of bullying. Victims of bullying reported more negative subjective health outcomes regardless of their D/CI status. Although inclusive education is currently a major topic of educational policies in most countries, additional efforts should be made to improve the quality of the integration of students with D/CI.

  1. Genetic explanations, discrimination and chronic illness: A qualitative study on hereditary haemochromatosis in Germany.

    Science.gov (United States)

    Manz, Ulrike

    2016-12-01

    The objective of this study is to explore the discriminatory impacts of genetic diagnosis for people living with the chronic illness of hereditary haemochromatosis in Germany. Semi-structured interviews with 15 patients; all had tested positive for a genetic mutation associated with haemochromatosis and already displayed symptoms of the disease. Inductive approach, with interviews collaboratively interpreted by the research group in a vertical and horizontal analysis informed by a multi-person perspective. First, as the genetic diagnosis of the disease holds the promise of therapeutic intervention, the interviewees perceived it as leading to relief. Second, the interviewees felt stigmatized by their family members, they complained of social isolation and a lack of acknowledgement of their health problems. Third, they feared disadvantages for themselves or their children at their place of work, when buying insurance coverage, and when attempting to donate blood. The findings point to the need for an expanded view on genetic discrimination. Besides institutional discrimination, it appears necessary to systematically address interactional stigmatization and take anxieties and fears into account. Here we see starting points for providing essential support through specialist and self-help groups to those faced with the genetic diagnosis of haemochromatosis in addition to and beyond the legal protection against genetic discrimination that already exists. © The Author(s) 2016.

  2. Pre-travel care for immunocompromised and chronically ill travellers: A retrospective study.

    Science.gov (United States)

    van Aalst, Mariëlle; Verhoeven, Roos; Omar, Freshta; Stijnis, Cornelis; van Vugt, Michèle; de Bree, Godelieve J; Goorhuis, Abraham; Grobusch, Martin P

    2017-09-01

    Immunocompromised and chronically ill travellers (ICCITs) are susceptible to travel related diseases. In ICCITs, pre-travel care regarding vaccinations and prophylactics is complex. We evaluated the protection level by preventive measures in ICCITs by analysing rates of vaccination protection, antibody titres, and the prescription of standby antibiotics. We analysed, and reported according to STROBE guidelines, pre-travel care data for ICCITs visiting the medical pre-travel clinic at the Academic Medical Centre, The Netherlands from 2011 to 2016. We analysed 2104 visits of 1826 ICCITs. Mean age was 46.6 years and mean travel duration 34.5 days. ICCITs on immunosuppressive treatment (29.7%), HIV (17.2%) or diabetes mellitus (10.2%) comprised the largest groups. Most frequently visited countries were Suriname, Indonesia, and Ghana. Most vaccination rates were >90%. Of travellers in high need of hepatitis A and B protection, 56.6 and 75.7%, underwent titre assessments, respectively. Of ICCITs with a respective indication, 50.6% received a prescription for standby antibiotics. Vaccination rates in our study population were overall comparable to those of healthy travellers studied previously in our centre. However, regarding antibody titre assessments and prescription of standby antibiotics, this study demonstrates that uniform pre-travel guidelines for ICCITs are highly needed. Copyright © 2017 Elsevier Ltd. All rights reserved.

  3. Care challenges for informal caregivers of chronically ill lung patients: results from a questionnaire survey.

    Science.gov (United States)

    Gautun, Heidi; Werner, Anne; Lurås, Hilde

    2012-02-01

    The article aims to answer who the informal caregivers of patients with chronic obstructive pulmonary disease (COPD) are, what kind of help they provide, and how they experience providing help to the patient. Data from a questionnaire survey to next of kin of COPD patients carried through in Norway in December 2009 and January 2010 is explored. About 70% of the patients have one or more informal caregivers, and a majority of the caregivers is the patient's spouse, most often a wife. The help provided is, to a large extent, practical help like housework, garden work, and shopping. Another important support is to accompany the patient to health care. About 45% of the caregivers are part of the work force. Rather few of the respondents experience the caregiving as so demanding that they have chosen to work part-time or quit working. The most demanding part of being an informal caregiver is an overall worrying for the patient. Paid sick leaves for caregivers that are employed, and hospital-at-home programmes that provide education and surveillance to the patient and his/her family through different phases of the illness, are policy means that both can help the informal caregivers to manage daily life and reduce the pressure on the formal healthcare and long-term care services in the future.

  4. Social networks, social capital and chronic illness self-management: a realist review.

    Science.gov (United States)

    Vassilev, Ivaylo; Rogers, Anne; Sanders, Caroline; Kennedy, Anne; Blickem, Christian; Protheroe, Joanne; Bower, Peter; Kirk, Sue; Chew-Graham, Carolyn; Morris, Rebecca

    2011-03-01

    Existing literature on the design of interventions and health policy about self-management have tended to focus on individual-centred definitions of self-care and there is growing recognition of the need to extend consideration beyond individual factors, which determine self-care, to examine wider influences such as the health service, the family and the wider social context. To explore the theoretical and empirical links between social networks, social capital and the self-care practices associated with chronic illness work and management in the context of people's everyday lives. A realist review method was used to search and appraise relevant quantitative and qualitative literature. The review findings indicate that social networks play an important part in the management of long-term conditions. We found that social networks tend to be defined narrowly and are primarily used as a way of acknowledging the significance of context. There is insufficient discussion in the literature of the specific types of networks that support or undermine self-care as well as an understanding of the processes involved. This necessitates shifting the emphasis of self-care towards community and network-centred approaches, which may also prove more appropriate for engaging people in socially and economically deprived contexts.

  5. [The hemodialysed patient and his/her family caregiver. Comparison of perceptions of the chronic illness].

    Science.gov (United States)

    Zanini, S; Ajmone, C; Margola, D; Busnach, G; Summa, I; Brunati, C; Cabibbe, M; Dal Col, A; De Ferrari, M E; Macaluso, M

    2006-01-01

    According to health psychology, the family caregiver (fc), i.e. the person who takes care of a hemodialysed patient, plays a pivotal role in coping with dialysis. This study explored and compared the lifestyle and the main needs of a cohort of hemodialysis patients, with reduced personal autonomy, to their fc, evaluating some psychological functional parameters, such as the perception of familial and social support, the psychological quality of life, the disability due to chronic illness, and the communication style. An anonymous multiple versions questionnaire, administered according to the caregiver's family relationship, was given for self assessment to 54 couples of patients and related fc (spouse, son/daughter and brother/sister), mean age 66 and 60, respectively; mean dialytic patients' age: 8 years and 6 months. The questionnaire consisted of three different sections, demographics, renal disease and psychological evaluation, with 4 standard scales (Social Support Satisfaction, Marital Communication, Psychological General Well-Being Index and Evaluation of Needs). A multivariate variance analysis (MANOVA) was subsequently performed. Women have a higher perception of their lifestyle change after dialysis, and, in general, patients communicate more easily with their fc than vice versa. Communication problems are more common in patients with a recent diagnosis. Patients and fc mostly need a better dialogue with their nephrologists and urge some psychological help. The quality of the relationship between physicians, patients and their families is a key element in the process of healing.

  6. Spirituality in adolescent patients.

    Science.gov (United States)

    Weaver, Meaghann S; Wratchford, Dale

    2017-07-01

    Adolescence, the transition between childhood and adulthood, represents a time of rapid biological, neurocognitive, and psychosocial changes. These changes have important implications for the development and evolution of adolescent spirituality, particularly for adolescents with chronic or life-limiting illnesses. To contribute positively to adolescent spiritual formation, palliative care teams benefit from understanding the normative changes expected to occur during adolescence. This paper provides a narrative review of adolescent spirituality while recognizing the role of religious, familial, and cultural influences on spiritual development during the teenage years. By giving explicit attention to the contextual norms surrounding adolescence and still recognizing each adolescent-aged patient as unique, palliative care teams can help adolescents transition toward meaningful and sustainable spiritual growth. This paper reviews the clinical and research implications relevant to integrating adolescent spiritual health as part of comprehensive palliative care.

  7. Attention and Working Memory in Female Adolescents With Chronic Pain and Pain-free Female Adolescents: A Preliminary Pilot Study.

    Science.gov (United States)

    Mifflin, Katherine; Chorney, Jill; Dick, Bruce

    2016-07-01

    Adolescents with chronic pain often report inattention and poor memory. There has been little research on cognitive function in this population. The goal of this preliminary pilot study was to examine differences in cognitive function between adolescents with chronic pain to pain-free adolescents. All participants completed baseline assessments of pain, school absences, depression, anxiety, and sleep habits. Standardized neurocognitive tests were used to examine cognitive function with a focus on working memory and attention. Recruitment from the chronic pain clinic resulted in a female sample of 13 individuals (largely reflective of the clinical population). Pain-free age-matched and sex-matched individuals (n=12) were therefore also recruited as controls. Individuals with chronic pain had significantly lower working memory scores than controls. Differences were found between groups on the most difficult selective attention task and not on tests of sustained attention, divided attention, or attentional switching. In a stepwise regression with baseline characteristics entered in the first step, pain accounted for approximately 15% of the variance in working memory and medication score counted for 49% of the variance. This pilot study is the first study to examine differences in working memory and attention between participants with chronic pain and pain-free adolescents. Our findings suggest that chronic pain may negatively affect adolescents' working memory function and highlights the risk for cognitive difficulties and problems with educational progression in addition to negative health and social effects associated with chronic pain. The study provides a starting point for more research and has the potential to direct better identification and treatment of these cognitive deficits.

  8. A Major Chronic Disease: Obesity in Childhood and Adolescence

    Directory of Open Access Journals (Sweden)

    Safak Ergul

    2011-04-01

    Full Text Available The aim of this paper is to draw attention to obesity in adolescence and its potential risks and put forward its consequences in terms of public health as well as offer solutions. Today, obesity has become one of the most frequent chronic diseases of childhood. The tendency to obesity is at an alarming level and the annual increase in this age group is gradually rising. In the 2003 report of the International Obesity Commission, it was stated that one out of ten children aged between 5-17 worldwide was overweight or obese. In addition to social and psychological problems resulting from obesity, it is known to be closely related with very serious diseases such as hypertension, cardiovascular diseases, type 2 diabetes and metabolic syndrome. It is also known that obesity shortens life expectancy and that the process starts in the childhood period of many obese adults. Struggling with obesity actually means struggling with many other diseases. It is also of major significance for the future of our country to struggle with especially childhood obesity. In terms of public health, it is of primary importance to detect, avoid and cure obesity in this period. [TAF Prev Med Bull 2011; 10(2.000: 223-230

  9. Subanesthetic ketamine infusions for the treatment of children and adolescents with chronic pain: a longitudinal study.

    Science.gov (United States)

    Sheehy, Kathy A; Muller, Elena A; Lippold, Caroline; Nouraie, Mehdi; Finkel, Julia C; Quezado, Zenaide M N

    2015-12-01

    Chronic pain is common in children and adolescents and is often associated with severe functional disability and mood disorders. The pharmacological treatment of chronic pain in children and adolescents can be challenging, ineffective, and is mostly based on expert opinions and consensus. Ketamine, an N-methyl-D-aspartate receptor antagonist, has been used as an adjuvant for treatment of adult chronic pain and has been shown, in some instances, to improve pain and decrease opioid-requirement. We examined the effects of subanesthetic ketamine infusions on pain intensity and opioid use in children and adolescents with chronic pain syndromes treated in an outpatient setting. Longitudinal cohort study of consecutive pediatric patients treated with subanesthetic ketamine infusions in a tertiary outpatient center. Outcome measurements included self-reported pain scores (numeric rating scale) and morphine-equivalent intake. Over a 15-month period, 63 children and adolescents (median age 15, interquartile range 12-17 years) with chronic pain received 277 ketamine infusions. Intravenous administration of subanesthetic doses of ketamine to children and adolescents on an outpatient basis was safe and not associated with psychotropic effects or hemodynamic perturbations. Overall, ketamine significantly reduced pain intensity (p pain reduction in patients with complex regional pain syndrome (CRPS) than in patients with other chronic pain syndromes (p = 0.029). Ketamine-associated reductions in pain scores were the largest in postural orthostatic tachycardia syndrome (POTS) and trauma patients and the smallest in patients with chronic headache (p = 0.007). In 37% of infusions, patients had a greater than 20 % reduction in pain score. Conversely, ketamine infusions did not change overall morphine-equivalent intake (p = 0.3). These data suggest that subanesthetic ketamine infusion is feasible in an outpatient setting and may benefit children and adolescents with chronic pain

  10. Transitioning adolescent and young adults with chronic disease and/or disabilities from paediatric to adult care services - an integrative review.

    Science.gov (United States)

    Zhou, Huaqiong; Roberts, Pamela; Dhaliwal, Satvinder; Della, Phillip

    2016-11-01

    This paper aims to provide an updated comprehensive review of the research-based evidence related to the transitions of care process for adolescents and young adults with chronic illness/disabilities since 2010. Transitioning adolescent and young adults with chronic disease and/or disabilities to adult care services is a complex process, which requires coordination and continuity of health care. The quality of the transition process not only impacts on special health care needs of the patients, but also their psychosocial development. Inconsistent evidence was found regarding the process of transitioning adolescent and young adults. An integrative review was conducted using a five-stage process: problem identification, literature search, data evaluation, data analysis and presentation. A search was carried out using the EBSCOhost, Embase, MEDLINE, PsycINFO, and AustHealth, from 2010 to 31 October 2014. The key search terms were (adolescent or young adult) AND (chronic disease or long-term illness/conditions or disability) AND (transition to adult care or continuity of patient care or transfer or transition). A total of 5719 records were initially identified. After applying the inclusion criteria a final 61 studies were included. Six main categories derived from the data synthesis process are Timing of transition; Perceptions of the transition; Preparation for the transition; Patients' outcomes post-transition; Barriers to the transition; and Facilitating factors to the transition. A further 15 subcategories also surfaced. In the last five years, there has been improvement in health outcomes of adolescent and young adults post-transition by applying a structured multidisciplinary transition programme, especially for patients with cystic fibrosis and diabetes. However, overall patients' outcomes after being transited to adult health care services, if recorded, have remained poor both physically and psychosocially. An accurate tracking mechanism needs to be

  11. The Relationship Between Traumatic Brain Injury and Rates of Chronic Symptomatic Illness in 202 Gulf War Veterans.

    Science.gov (United States)

    Chao, Linda L

    2018-05-18

    Although not a "signature injury" of Operation Desert Shield/Desert Storm (i.e., Gulf War, GW), some GW veterans have a history traumatic brain injury (TBI). For example, a previous study found that 12.2% of the GW veterans from the Fort Devens Cohort Study had self-reported TBIs. The present study sought to build upon this finding by examining the relationship between TBI and chronic symptomatic illness in a different sample of GW veterans. Participants were 202 GW veterans recruited from 2014 to 2018 at the San Francisco Veterans Affairs Medical Center as part of a VA-funded study on the effects of predicted exposure to low levels of sarin and cyclosarin on brain structure and function. The Ohio State University TBI identification method was used to determine lifetime history of TBI. The Kansas Gulf War Military History and Health Questionnaire was used to assess symptoms and to determine cases of Kansas Gulf War Illness (GWI) and Centers for Disease Control and Prevention (CDC) Chronic Multisymptom Illness (CMI). Nearly half (47%) the sample had a history of TBI, but only 7% of the TBIs were sustained in injuries that occurred during the GW. Most of the TBIs were sustained in injuries that occurred prior to (73%) or after (34%) the GW. History of TBI was not associated with higher rates of symptomatic illness when it was narrowly defined (i.e., Kansas GWI cases or cases of severe CMI). History of TBI was only associated with higher rates of symptomatic illness when it is broadly defined (i.e., CDC CMI or mild-moderate CMI). There was suggestive evidence that veterans who sustained TBIs during the GW (only seven in the present sample) have poorer functional outcomes compared with GW veterans with non-GW related TBIs. While TBIs were uncommon during the GW, many GW veterans sustained TBIs prior or after the GW. Because TBI and GWI/CMI share some overlapping symptoms, history of TBI may appear to be associated with increased rates of chronic symptomatic illness in

  12. Affordability, availability and acceptability barriers to health care for the chronically ill: Longitudinal case studies from South Africa

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    Russell Steven

    2009-05-01

    Full Text Available Abstract Background There is an increasing burden of chronic illness in low and middle income countries, driven by TB/HIV, as well as non-communicable diseases. Few health systems are organized to meet the needs of chronically ill patients, and patients' perspectives on the difficulties of accessing care need to be better understood, particularly in poor resourced settings, to achieve this end. This paper describes the experience of poor households attempting to access chronic care in a rural area of South Africa. Methods A household survey (n = 1446 individuals was combined with qualitative longitudinal research that followed 30 case study households over 10 months. Illness narratives and diaries provided descriptive textual data of household interactions with the health system. Results In the survey 74% of reported health problems were 'chronic', 48% of which had no treatment action taken in the previous month. Amongst the case study households, of the 34 cases of chronic illness, only 21 (62% cases had an allopathic diagnosis and only 12 (35% were receiving regular treatment. Livelihoods exhausted from previous illness and death, low income, and limited social networks, prevented consultation with monthly expenditure for repeated consultations as high as 60% of income. Interrupted drug supplies, insufficient clinical services at the clinic level necessitating referral, and a lack of ambulances further hampered access to care. Poor provider-patient interaction led to inadequate understanding of illness, inappropriate treatment action, 'healer shopping', and at times a break down in cooperation, with the patient 'giving up' on the public health system. However, productive patient-provider interactions not only facilitated appropriate treatment action but enabled patients to justify their need for financial assistance to family and neighbours, and so access care. In addition, patients and their families with understanding of a disease became a

  13. Stress and wellbeing during chronic illness and partner death in later-life: the role of social support.

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    Karantzas, Gery C; Gillath, Omri

    2017-02-01

    Chronic illness and the death of a romantic partner are two of the most significant stressors reported by older adults, resulting in various physical and mental health consequences. Evidence suggests that social support is a key factor in understanding the association between chronic illness and widowhood and the wellbeing of older adults. Nevertheless, research into social support is often approached in an atheoretical manner when investigating these stressors in older adulthood. We attempt to address this theoretical chasm by proposing an integrative model to explain social support processes in older couples which draws on models of social support and attachment theory. Our model provides an important framework for understanding existing research findings as well as guiding future research. Copyright © 2016 Elsevier Ltd. All rights reserved.

  14. Prospective assessment of chronic multisymptom illness reporting possibly associated with open-air burn pit smoke exposure in Iraq.

    Science.gov (United States)

    Powell, Teresa M; Smith, Tyler C; Jacobson, Isabel G; Boyko, Edward J; Hooper, Tomoko I; Gackstetter, Gary D; Phillips, Christopher J; Smith, Besa

    2012-06-01

    To investigate the relationship between chronic multisymptom illness (CMI) and possible exposure to an open-air burn pit at three selected bases among those deployed to operations in Iraq and Afghanistan. Chronic multisymptom illness (reporting at least one symptom in at least two of the following symptom constructs: general fatigue; mood and cognition problems; and musculoskeletal discomfort) was assessed, differentiating by potential burn pit exposure, among deployers who completed 2004 and 2007 Millennium Cohort questionnaires. More than 21,000 Cohort participants were deployed in support of the current operations, including more than 3000 participants with at least one deployment within a 3-mile radius of a documented burn pit. After adjusting for covariates, no elevated risk of CMI was observed among those exposed. There was no increase in CMI symptom reporting in those deployed to three selected bases with documented burn pits compared with other deployers.

  15. Patient activation and disparate health care outcomes in a racially diverse sample of chronically ill older adults.

    Science.gov (United States)

    Ryvicker, Miriam; Peng, Timothy R; Feldman, Penny Hollander

    2012-11-01

    The Patient Activation Measure (PAM) assesses people's ability to self-manage their health. Variations in PAM score have been linked with health behaviors, outcomes, and potential disparities. This study assessed the relative impacts of activation, socio-demographic and clinical factors on health care outcomes in a racially diverse sample of chronically ill, elderly homecare patients. Using survey and administrative data from 249 predominantly non-White patients, logistic regression was conducted to examine the effects of activation level and patient characteristics on the likelihood of subsequent hospitalization and emergency department (ED) use. Activation was not a significant predictor of hospitalization or ED use in adjusted models. Non-Whites were more likely than Whites to have a hospitalization or ED visit. Obesity was a strong predictor of both outcomes. Further research should examine potential sources of disadvantage among chronically ill homecare patients to design effective interventions to reduce health disparities in this population.

  16. Adolescent environmental enrichment prevents behavioral and physiological sequelae of adolescent chronic stress in female (but not male) rats.

    Science.gov (United States)

    Smith, Brittany L; Morano, Rachel L; Ulrich-Lai, Yvonne M; Myers, Brent; Solomon, Matia B; Herman, James P

    2017-11-22

    The late adolescent period is characterized by marked neurodevelopmental and endocrine fluctuations in the transition to early adulthood. Adolescents are highly responsive to the external environment, which enhances their ability to adapt and recover from challenges when given nurturing influences, but also makes them vulnerable to aberrant development when exposed to prolonged adverse situations. Female rats are particularly sensitive to the effects of chronic stress in adolescence, which manifests as passive coping strategies and blunted hypothalamo-pituitary adrenocortical (HPA) stress responses in adulthood. We sought to intervene by exposing adolescent rats to environmental enrichment (EE) immediately prior to and during chronic stress, hypothesizing that EE would minimize or prevent the long-term effects of stress that emerge in adult females. To test this, we exposed male and female rats to EE on postnatal days (PND) 33-60 and implemented chronic variable stress (CVS) on PND 40-60. CVS consisted of twice-daily unpredictable stressors. Experimental groups included: CVS/unenriched, unstressed/EE, CVS/EE and unstressed/unenriched (n = 10 of each sex/group). In adulthood, we measured behavior in the open field test and forced swim test (FST) and collected blood samples following the FST. We found that environmental enrichment given during the adolescent period prevented the chronic stress-induced transition to passive coping in the FST and reversed decreases in peak adrenocortical responsiveness observed in adult females. Adolescent enrichment had little to no effect on males or unstressed females tested in adulthood, indicating that beneficial effects are specific to females that were exposed to chronic stress.

  17. Childhood Trauma and Chronic Illness in Adulthood: Mental Health and Socioeconomic Status as Explanatory Factors and Buffers

    OpenAIRE

    Mock, Steven E.; Arai, Susan M.

    2011-01-01

    Experiences of traumatic events in childhood have been shown to have long-term consequences for health in adulthood. With data from the 2005 Canadian Community Health Survey we take a life course perspective of cumulative disadvantage and examine the potential role of mental health and socioeconomic status in adulthood as multiple mediators of the link between childhood trauma and chronic illness in adulthood. Mental health and socioeconomic status are also tested as buffers against the typ...

  18. An exploratory study of the personal health records adoption model in the older adult with chronic illness

    Directory of Open Access Journals (Sweden)

    Melanie D Logue

    2013-05-01

    Full Text Available Background Despite international efforts moving toward integrated care using health information technologies and the potential of electronic PHRs to help us better coordinate patient-centered care, PHR adoption in the United States remains low among patients who have been offered free access to them from private-sector companies. If older adult stand to benefit from the use of PHRs for its usefulness in self-managing chronic illness, why have they not been more readily adopted? Since the chronically ill older adult has unique circumstances that impact their decision to participate in self-directed care, a theoretical framework to help understand factors that influence the adoption of PHRs is important. Here we describe the results of an exploratory study that provided an initial test of such a framework.Methods The study used a descriptive survey methodology with 38 older adults. The survey questionnaire asked about the personal barriers and facilitators associated with personal health record adoption and included items measuring each of the PHRAM’s four interacting factors (environmental factors, personal factors, technology factors, and self-management, and the resulting behavioural outcome.Results Younger seniors had a more positive attitude toward computers, knew what health resources were available on the internet, agreed that they had the resources in place to use PHRs, and would be more influenced by a family member than a healthcare provider to use them. Conversely, older seniors reported less confidence in their ability to use Internet-based PHRs and did not perceive that they had the resources in place to use them.Conclusions The results of this study indicated that personal, environmental, technology, chronic illness, and behavioral factors operated concurrently as personal barriers and/or facilitators to the adoption of PHRs among the older adult with chronic illness. These factors cannot be isolated because the person commonly

  19. Perceived Exercise Self-Efficacy, Benefits and Barriers, and Commitment to a Plan for Exercise among Jordanians with Chronic Illnesses.

    Science.gov (United States)

    Darawad, Muhammad W; Khalil, Amani A; Hamdan-Mansour, Ayman M; Nofal, Basema M

    2016-11-01

    To explore Jordanian chronic illnesses patients' perceived exercise self-efficacy, benefits and barriers, and commitment to exercise planning, and to assess the relationship between those variables. Descriptive cross-sectional design. Data were collected from a convenience sample of 402 outpatient Jordanians with chronic illnesses, using Exercise Self-Efficacy Scale, Exercise Benefits and Barriers Scale, and Commitment to a Plan for Exercise Scale. The average BMI was 28.3, and exercise period 3.2 hours/ week. Participants reported moderate perceived self-efficacy (M= 47.5%, SD= 11.7), commitment to exercise planning (M=2.0/3, SD=0.3), exercise barriers (M=2.4/4, SD=0.3), and benefits (M=2.3/4, SD=0.3). Commitment to exercise planning had a significant correlation with barriers (r=0.11) and benefits (r=0.10). Self-efficacy was not found to correlate with other variables. Even though participants reported higher perceived self-efficacy and commitment to exercise plan than that reported in literature, they were found to be overweight and inactive, which indicates the importance of such study. Exercise education programs are needed taking into considerations patients' individual differences. However, the broad grouping of diseases may not produce a homogenous sample, for which disease categories are recommended in future studies. Patients with chronic illness need more encouragement to engage themselves in exercise practices. Exercise educational program for patients with chronic illnesses should consider patients' reported exercise benefits and barriers. © 2014 Association of Rehabilitation Nurses.

  20. Efficacy of inosine pranobex in frequently ill children with chronic Epstein–Barr virus infection: randomized study

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    E.N. Simovanyan

    2011-01-01

    Full Text Available High incidence of acute respiratory infections (ARI in immunocompromised frequently ill children with chronic Epstein–Barr infection forces the prescription of drugs with complex antivirus and immunocorrecting effect. The objective: to study the efficacy of inosine pranobex (Isoprinosine in treatment of active Epstein–Barr virus infection in frequently ill children. Methods: patients were randomized in group of standard treatment (n = 24 and standard treatment + inosine pranobex 50 mg/kg of body weight divided to 3–4 parts daily (3 courses of 10 days every other 10 days. Primary efficacy criterion was the incidence of ARI episodes during 12 months of observation. Results: the treatment with inosine pranobex resulted in decrease of incidence (4 and 25% and duration of ARI (5.6 ± 1.2 and 8.8 ± 3.3 days compared to standard treatment. Besides, inosine pranobex decreased the frequency of lymphoproliferation, arthralgic and cardiac syndromes, favored to rapid elimination of serologic markers of Epstein–Barr virus replication and normalization of blood concentrations of interferon _ and interleukine 4. Side effects of treatment with inosine pranobex were not registered. Conclusion: inosine pranobex is efficient and safe drug in treatment of active form of chronic Epstein–Barr virus infection in frequently ill children.Key words: frequently ill children, Epstein–Barr virus, inosine pranobex, treatment.

  1. "Because somebody cared about me. That's how it changed things": homeless, chronically ill patients' perspectives on case management.

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    Elizabeth Davis

    Full Text Available Case management programs for chronically ill, homeless people improve health and resource utilization by linking patients with case managers focused on improving management of medical and psychosocial problems. Little is known about participants' perspectives on case management interventions.This qualitative study used in-depth, one-on-one interviews to understand the impact of a case management program from the perspective of participants. A standardized interview guide with open-ended questions explored experiences with the case management program and feelings about readiness to leave the program.FOUR RECURRENT THEMES EMERGED: (1 Participants described profound social isolation prior to case management program enrollment; (2 Participants perceived that caring personal relationships with case managers were key to the program; (3 Participants valued assistance with navigating medical and social systems; and (4 Participants perceived that their health improved through both the interpersonal and the practical aspects of case management.Chronically ill, homeless people enrolled in a case management program perceived that social support from case managers resulted in improved health. Programs for this population should consider explicitly including comprehensive social support interventions. Further research on case management should explore the impact of different types of social support on outcomes for homeless chronically ill patients.

  2. Impact of a family-oriented rehabilitation programme on behavioural and emotional problems in healthy siblings of chronically ill children.

    Science.gov (United States)

    Besier, T; Hölling, H; Schlack, R; West, C; Goldbeck, L

    2010-09-01

    To evaluate the impact of a family-oriented inpatient rehabilitation programme on behavioural and emotional problems in healthy siblings of chronically ill children and to assess the association between these problems and quality of life. A total of 259 healthy children (4-16 years, M = 8.6 years, SD = 3.3) with a chronically ill sibling were enrolled in the study. Parents filled in the Strengths and Difficulties Questionnaire, while the children answered a self-report quality of life instrument (LQ-KID) at the time of admission and discharge from the clinic and at a 6-month follow-up. Comparisons were performed with a matched control group from the German general population (n= 777). Significant behavioural or emotional symptoms were found in 30.5% of the healthy siblings, the relative risk of having elevated scores being 2.2 compared with the control group. Symptoms were inversely correlated with quality of life (r=-0.42). During the inpatient rehabilitation, symptoms decreased significantly to a normal level. Similarly, quality of life significantly improved, except in the dimension family relations. Family-oriented inpatient rehabilitation is a promising approach to improve the mental health of children with a chronically ill sibling.

  3. [Definition of medical competence. The point of view of chronically-ill patients in the Andalusian public healthcare system (Spain)].

    Science.gov (United States)

    Prieto Rodríguez, M Ángeles; Danet Danet, Alina; Escudero Carretero, María J; Ruiz Azarola, Ainhoa; Pérez Corral, Olivia; García Toyos, Noelia

    2012-01-01

    To identify the attributes used by chronically-ill patients to describe physicians' competence in the public healthcare system in Andalucia. A total of 147 chronically-ill patients and their relatives were included in this qualitative study. Focal groups and in-depth interviews were performed in health centers and outpatient centers in Granada, Malaga, Seville, Cadiz and Cordoba between 2007 and 2008. Content analysis was carried out using Nudist Vivo. The participants defined medical competence as combining elements of technical ability and knowledge (awareness of and interest in the disease, continuity of follow-up and requesting specific tests) with interpersonal skills related to communication, information (informing, listening, trust, prompting questions) and attention (courtesy, cordiality, respect, interest and approachability). Primary care was expected to provide a close relationship, personalized treatment, information, drug prescription, and referral to specialized care. Specialized care was expected to provide an accurate diagnosis and appropriate treatment, information and follow-up. Highly valued aspects of emergency care were symptom relief, accurate diagnosis, referral to specialists and courtesy. Chronically-ill patients based their evaluation of medical competence on technical and interpersonal skills. Copyright © 2011 SESPAS. Published by Elsevier Espana. All rights reserved.

  4. Transitional Care for Older Adults with Chronic Illnesses as a Vulnerable Population: Theoretical Framework and Future Directions in Nursing.

    Science.gov (United States)

    Son, Youn Jung; You, Mi Ae

    2015-12-01

    Effective transitional care is needed to improve the quality of life in older adult patients with chronic illness and avoid discontinuity of care and adverse events. The aim of this article is to provide an overview of the key features, broader implications, and the utility of Meleis' transition theory intended for the transitional care of older adults with chronic illnesses. We present the role of nurse in the context of transitional care and propose future directions to increase the quality of nursing care. The online databases Cumulative Index of Nursing and Allied Health Literature, MEDLINE, and Science Direct were searched for relevant literature published since 1970 along with textbooks regarding nursing theory. An evaluation of the usefulness of transition theory based on transitional care in older adult patients with chronic illnesses is provided. Healthy transition should be the expected standard of nursing care for older adults across all healthcare settings. Nurses need to contribute to the development of transitional care for vulnerable populations; however, transition theory needs to be enhanced through additional theoretical work and repeated evaluations of the applicability in areas of transitional care.

  5. Report on Honduras: ripples in the pond--the financial crisis and remittances to chronically ill patients in Honduras.

    Science.gov (United States)

    Piette, John D; Mendoza-Avelares, Milton O; Chess, Laura; Milton, Evan C; Matiz Reyes, Armando; Rodriguez-Saldaña, Joel

    2012-01-01

    The U.S. financial crisis has affected employment opportunities for Latino immigrants, and this could affect their ability to send financial assistance, or "remittances", to chronically ill family members in their home country. In a cross-sectional survey of 624 chronically ill adults conducted in Honduras between June and August 2009, respondents reported their receipt of remittances, health service use, and cost-related access barriers. Fifty-four percent of respondents reported relatives living outside the country, and of this group, 66 percent (37% of the overall sample) received remittances. Seventy-four percent of respondents receiving remittances reported a decrease over the prior year, mostly due to job losses among their relatives abroad. Respondents reporting reductions in remittances received significantly less per month, on average, than those without a reduction (US $170 vs. $234; p = 0.01). In multivariate models, respondents experiencing a reduction in remittances used fewer health services and medications due to cost concerns. Remittance payments from relatives resident in the United States are a major source of income for chronically ill individuals in Latin America. Most recipients of remittances reported a reduction during the financial downturn that affected their access to care.

  6. Adolescent but not adult-born neurons are critical for susceptibility to chronic social defeat

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    Greer S Kirshenbaum

    2014-08-01

    Full Text Available Recent evidence implicates adult hippocampal neurogenesis in regulating behavioral and physiologic responses to stress. Hippocampal neurogenesis occurs across the lifespan, however the rate of cell birth is up to 300% higher in adolescent mice compared to adults. Adolescence is a sensitive period in development where emotional circuitry and stress reactivity undergo plasticity establishing life-long set points. Therefore neurogenesis occurring during adolescence may be particularly important for emotional behavior. However, little is known about the function of hippocampal neurons born during adolescence. In order to assess the contribution of neurons born in adolescence to the adult stress response and depression-related behavior, we transiently reduced cell proliferation either during adolescence, or during adulthood in GFAP-Tk mice. We found that the intervention in adolescence did not change baseline behavioral responses in the forced swim test, sucrose preference test or social affiliation test, and did not change corticosterone responses to an acute stressor. However following chronic social defeat, adult mice with reduced adolescent neurogenesis showed a resilient phenotype. A similar transient reduction in adult neurogenesis did not affect depression-like behaviors or stress induced corticosterone. Our study demonstrates that hippocampal neurons born during adolescence, but not in adulthood are important to confer susceptibility to chronic social defeat.

  7. Quality of Life as Medicine: A Pilot Studyof Patients with Chronic Illness and Pain

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    Soren Ventegodt

    2003-01-01

    Full Text Available An intensive 5-day quality-of-life (QoL session was constructed based on a psychosomatic model. The session was comprised of teaching on philosophy of life, psychotherapy, and body therapy. The three elements were put together in such a way that they mutually supported each other. The synergy attained was considerable. The pilot study demonstrated that in the course of only 1 week, patients had time to revise essential life-denying views and to integrate important, unfinished life events involving negative feelings. Consequently, the patients became more present in the body’s blocked-off areas and subjectively healthier. Nineteen persons with chronic illness and pain (fibromyalgia, chronic tiredness, whiplash, mild depression, and problems involving pain in arms and legs including osteoarthritis, and unemployed for 5–7 years attended the course. In the week before and after the 5-day course, the participants completed the validated SEQOL (Self-Evaluation of Quality of Life Questionnaire including questions on self-evaluated health and the unvalidated “Self-Evaluation of Working-Life Quality Questionnaire” (SEQWL. This pilot study was without a control group or clinical control. As far as diagnoses were concerned, the group was inhomogeneous. Common for the group was a low QoL, poor quality of working life QWL, and numerous health problems. The study showed an 11.2% improvement in QoL (p < 0.05, a 6.3% improvement in QWL (p < 0.05, and a 12.0% improvement in self-perceived physical health (p = 0.08. There was a 17.3% improvement in self-perceived psychological health (p < 0.05 and satisfaction with health in general improved by 21.4% (p < 0.05. Symptoms like pain were almost halved and several of the participants were free of pain for the first time in years. In conclusion it seemed that the combination of training in philosophy of life, psychotherapy, and body therapy can give patients a large, fast, and efficient improvement in QoL, QWL

  8. The impact of parents’ chronic medical condition on children

    NARCIS (Netherlands)

    Sieh, D.S.

    2012-01-01

    The results of this research suggests that latency-aged and adolescent children generally cope well with the parent’s chronic disease. In terms of parent attachment, coping skills, and salivary cortisol, adolescents with a chronically ill parent have similar scores as those who do not have a

  9. Guidelines for the Gamification of Self-Management of Chronic Illnesses: Multimethod Study.

    Science.gov (United States)

    AlMarshedi, Alaa; Wills, Gary; Ranchhod, Ashok

    2017-05-12

    Gamification is the use of game elements and techniques in nongaming contexts. The use of gamification in health care is receiving a great deal of attention in both academic research and the industry. However, it can be noticed that many gamification apps in health care do not follow any standardized guidelines. This research aims to (1) present a set of guidelines based on the validated framework the Wheel of Sukr and (2) assess the guidelines through expert interviews and focus group sessions with developers. Expert interviews (N=6) were conducted to assess the content of the guidelines and that they reflect the Wheel of Sukr. In addition, the guidelines were assessed by developers (N=15) in 5 focus group sessions, where each group had an average of 3 developers. The guidelines received support from the experts. By the end of the sixth interview, it was determined that a saturation point was reached. Experts agreed that the guidelines accurately reflect the framework the Wheel of Sukr and that developers can potentially use them to create gamified self-management apps for chronic illnesses. Moreover, the guidelines were welcomed by developers who participated in the focus group sessions. They found the guidelines to be clear, useful, and implementable. Also, they were able to suggest many ways of gamifying a nongamified self-management app when they were presented with one. The findings suggest that the guidelines introduced in this research are clear, useful, and ready to be implemented for the creation of self-management apps that use the notion of gamification as described in the Wheel of Sukr framework. The guidelines are now ready to be practically tested. Further practical studies of the effectiveness of each element in the guidelines are to be carried out. ©Alaa AlMarshedi, Gary Wills, Ashok Ranchhod. Originally published in JMIR Serious Games (http://games.jmir.org), 12.05.2017.

  10. Current and Potential Support for Chronic Disease Management in the United States: The Perspective of Family and Friends of Chronically Ill Adults

    Science.gov (United States)

    Rosland, Ann-Marie; Heisler, Michele; Janevic, Mary; Connell, Cathleen; Langa, Kenneth M.; Kerr, Eve A.; Piette, John D.

    2013-01-01

    Objectives Family members and friends can be an important source of self-management support for older adults with chronic diseases. We characterized the U.S. population of potential and current “disease management supporters” for people with chronic illness who are ADL-independent, the help that supporters could provide, and barriers to increasing support. Methods Nationally-representative survey of U.S. adults (N=1,722). Results 44% of respondents (representing 100 million US adults) help a family member or friend with chronic disease management; another 9% (representing 21 million US adults) are willing to start. Most are willing to assist with key tasks such as medication use and communicating with providers, although they feel constrained by privacy concerns and a lack of patient health information. Discussion The majority of U.S. adults already help or would be willing to help one of their family members or friends with chronic illness care. Supporters' specific concerns could be addressed through innovative programs. PMID:23795624

  11. Chronic Childhood Peer Rejection is Associated with Heightened Neural Responses to Social Exclusion During Adolescence.

    Science.gov (United States)

    Will, Geert-Jan; van Lier, Pol A C; Crone, Eveline A; Güroğlu, Berna

    2016-01-01

    This functional Magnetic Resonance Imaging (fMRI) study examined subjective and neural responses to social exclusion in adolescents (age 12-15) who either had a stable accepted (n = 27; 14 males) or a chronic rejected (n = 19; 12 males) status among peers from age 6 to 12. Both groups of adolescents reported similar increases in distress after being excluded in a virtual ball-tossing game (Cyberball), but adolescents with a history of chronic peer rejection showed higher activity in brain regions previously linked to the detection of, and the distress caused by, social exclusion. Specifically, compared with stably accepted adolescents, chronically rejected adolescents displayed: 1) higher activity in the dorsal anterior cingulate cortex (dACC) during social exclusion and 2) higher activity in the dACC and anterior prefrontal cortex when they were incidentally excluded in a social interaction in which they were overall included. These findings demonstrate that chronic childhood peer rejection is associated with heightened neural responses to social exclusion during adolescence, which has implications for understanding the processes through which peer rejection may lead to adverse effects on mental health over time.

  12. The importance of illness duration, age at diagnosis and the year of diagnosis for labour participation chances of people with chronic illness: results of a nationwide panel-study in The Netherlands.

    Science.gov (United States)

    Rijken, Mieke; Spreeuwenberg, Peter; Schippers, Joop; Groenewegen, Peter P

    2013-09-04

    Compared to participation rates among general populations, participation of people with chronic illness in the labour market lags behind. This is undesirable, both from the perspective of individuals' well-being as from a macro-economic perspective for western countries where concerns exist about labour supply and sustainability of social security in the near future. To help develop successful policy measures to prevent early drop-out and support reintegration, we aimed to gain insight into the role of three age related characteristics that may relate to labour participation chances of people with chronic illness: the duration of their illness, how old they were when the chronic disease was diagnosed and the historical year in which the diagnosis was established. We analyzed data of one (first) measurement of several cohorts of people diagnosed with a somatic chronic disease, who (had) participated in the Dutch 'National Panel of people with Chronic illness or Disability' since 1998 (N = 4634 in total). Multi-level logistic regression analyses were conducted to estimate random effects of the age at diagnosis and the year of diagnosis and fixed effects of illness duration on labour participation, while correcting for the effects of socio-demographic and disease characteristics and socio-economic indicators. A significant part of the variation in labour participation among people with chronic illness relates to the age they had when they were diagnosed. Furthermore, a longer illness duration is significantly associated with a lower chance of being economically active. This is more the case for men than for women. Labour participation of cancer survivors depends on the phase of the illness they find themselves in. No evidence was found that the year in which the diagnosis was established matters for employment chances later in life. Age at diagnosis and illness duration relate to chronically ill people's chances to participate in the labour market, but how and how

  13. HIV-related chronic lung disease in adolescents: are we prepared for the future?

    Science.gov (United States)

    Goussard, Pierre; Gie, Robert P

    2017-12-01

    Chronic lung diseases (CLD) are the most chronic disease occurring in adolescents living with human immunodeficiency virus (ALHIV). In ALHIV who received antiretroviral therapy (ART) late in childhood, bronchiectasis, bronchiolitis obliterans and interstitial pneumonitis are common. In adolescents who received ART early in life the spectrum of CLD has changed with asthma and chronic obstructive pulmonary disease being common. Areas covered: The aim of this paper was to review CLD in ALHIV. We conducted a literature review of electronic databases focusing on CLD that were common prior to the introduction of ART (1996-2004), the present situation where ART is widely available (2005 to 2016), and articles which aided us speculating on the impact of HIV-related CLD in adolescents transitioning to adult HIV-clinics. Amongst the approximately 2.1 million adolescents living with HIV, CLD commonly occurs. Awareness of the CLD amongst ALHIV needs to be raised to ensure that disease appropriate treatment is available to these vulnerable adolescents. Expert commentary: As adolescents' transition from pediatric HIV-clinics to adult HIV-clinics the evidence shows that adolescents might not receive optimal care if adult pulmonologists are not aware of the CLD that commonly occur in ALHIV.

  14. Chronic neglected irreducible atlantoaxial rotatory subluxation in adolescence

    Directory of Open Access Journals (Sweden)

    Pravin Padalkar

    2016-01-01

    Full Text Available Atlantoaxial rotatory fixation (AARF is a rare condition and delayed diagnosis. We report a case of chronic neglected atlantoaxial rotatory subluxation in adolescence child that was treated by serial skull traction followed by posterior fusing by method pioneered by Goel et al. A 15-year-old male presented with signs of high cervical myelopathy 2 years after trauma to neck childhood. There was upper cervical kyphosis, direct tenderness over C2 spinous process, atrophy of both hand muscles with weakness in grip strength. Reflexes in upper and lower extremities were exaggerated. Imaging showed Type 3 (Fielding and Hawkins rotatory atlantoaxial dislocation (AAD. Treatment options available were 1. Staged anterior Transoral release & reduction followed by posterior fusion described by Govender and Kumar et al, 2. Posterior open reduction of joint and fusion, 3. Occipitocervical fusion with decompression. Our case was AARF presented to us with almost 2-year post injury. Considering complications associated with anterior surgery and posterior open reduction, we have opted for closed reduction by serially applying weight to skull traction under closed neurological monitoring. We have serially increased weight up to 15 kg over a period of 1 week before. We have achieved some reduction which was confirmed by traction lateral radiographs and computerized axial tomography scan. Residual subluxation corrected intra-operatively indirectly by using reduction screws in Goel et al. procedure. Finally performed for C1-C2 fusion to take care of Instability. We like to emphasis here role of closed reduction even in delayed and neglected cases.

  15. Chronic Stressors and Adolescents' Externalizing Problems: Genetic Moderation by Dopamine Receptor D4. The TRAILS Study.

    Science.gov (United States)

    Zandstra, Anna Roos E; Ormel, Johan; Hoekstra, Pieter J; Hartman, Catharina A

    2018-01-01

    The existing literature does not provide consistent evidence that carriers of the Dopamine D4 Receptor 7-repeat allele are more sensitive to adverse environmental influences, resulting in enhanced externalizing problems, compared to noncarriers. One explanation is that the adverse influences examined in prior studies were not severe, chronic, or distressing enough to reveal individual differences in sensitivity reflected by DRD4-7R. This study examined whether the 7-repeat allele moderated the association between chronic stressors capturing multiple stressful aspects of individuals' lives and externalizing problems in adolescence. We expected that chronic stressor levels would be associated with externalizing levels only in 7-repeat carriers. Using Linear Mixed Models, we analyzed data from 1621 Dutch adolescents (52.2% boys), obtained in three measurement waves (mean age approximately 11, 13.5, and 16 years) from the TRacking Adolescents' Individual Lives Survey (TRAILS) population-based birth cohort and the parallel clinic-referred cohort. Across informants, we found that higher levels of chronic stressors were related to higher externalizing levels in 7-repeat carriers but not in noncarriers, as hypothesized. Although previous studies on the 7-repeat allele as a moderator of environmental influences on adolescents' externalizing problems have not convincingly demonstrated individual differences in sensitivity to adverse environmental influences, our findings suggest that adolescent carriers of the Dopamine D4 Receptor 7-repeat allele are more sensitive to chronic, multi-context stressors than noncarriers.

  16. Perceptions of Smartphone User-Centered Mobile Health Tracking Apps Across Various Chronic Illness Populations: An Integrative Review.

    Science.gov (United States)

    Birkhoff, Susan D; Smeltzer, Suzanne C

    2017-07-01

    This integrative review presents a synthesis of the current qualitative research addressing the motivating factors, usability, and experiences of mobile health tracking applications (apps) across various chronic disease populations. Integrative review of the literature. Databases used to conduct this integrative review included: PubMed Plus, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Google Scholar, Science Direct, and EBSCO megafile. The following search terms were used in all five databases: smartphone apps, apps, mHealth, eHealth, mobile health apps, health tracking apps, user-centered apps, wireless technology, engagement, qualitative, and usability. The initial literature review yielded 689 results. Once inclusion and exclusion criteria were employed, 11 studies met the criteria set forth for this review. The reviewed studies provided insight into users' perceptions, experiences, and motivations to incorporate smartphone mobile health apps into their daily lives when living with chronic illnesses. This review indicates the growing interest in user-centered mobile health tracking apps, but with little understanding of motivating factors that foster sustained app use. Mobile health tracking apps targeted to users with chronic conditions need to have a high level of usability in order to motivate users to sustain engagement with their mobile health tracking app. User-centered mobile health tracking app technology is being used with increasing frequency to potentially provide individualized support to chronic illness populations. © 2017 Sigma Theta Tau International.

  17. The Co-morbidity of Depression and other Chronic Non ...

    African Journals Online (AJOL)

    Items 1 - 13 ... Key words: Depression, Non-communicable diseases, comorbidity of depression and non-communicable ... problem particularly among those with chronic illnesses. ..... of diversity, veterans, students, older adults, adolescents,.

  18. The influence of frailty syndrome on acceptance of illness in elderly patients with chronic obstructive pulmonary disease

    Directory of Open Access Journals (Sweden)

    Uchmanowicz I

    2016-09-01

    Full Text Available Izabella Uchmanowicz,1 Beata Jankowska-Polanska,1 Mariusz Chabowski,2 Bartosz Uchmanowicz,1 Andrzej M Fal3 1Department of Clinical Nursing, Faculty of Health Science, Wroclaw Medical University, 2Division of Nursing in Surgical Procedures, Department of Clinical Nursing, Faculty of Health Science, Wroclaw Medical University, 3Department of Healthcare Organisation and Economics, National Institute of Public Health, National Institute of Hygiene, Warsaw, Poland Abstract: COPD is one of the most debilitating diseases. Frailty syndrome and advanced age may decrease the acceptance of illness, quality of life, and worsen health conditions in these patients, as well as lead to an increase in health care expenses. The aim of the study was to assess how the level of frailty affects the acceptance of illness in elderly patients with COPD. We also aimed to evaluate the associations between sociodemographic and clinical factors and the level of acceptance of illness, anxiety, and frailty in this group of patients. The study included 102 COPD patients with a mean age of 63.2 (standard deviation =6.5 years and grades I (3%, II (37%, III (52%, and IV (8% by Global Initiative for Chronic Obstructive Lung Disease. The Polish versions of the Acceptance of Illness Scale and Tilburg frailty indicator were used. Frailty syndrome was found in 77 (75.5% patients, with an average score of 7.42 (standard deviation =2.24. Coexisting diseases such as hypertension (46.07%, coronary artery disease (32.35%, heart failure (28.43%, diabetes (18.63%, and heart arrhythmia (9.8% were found among the subjects. The overall level of acceptance of illness was 20.6 (standard deviation =7.62. A lower level of acceptance of illness was associated with a higher level of frailty, especially in the physical and social domain. Elderly patients with severe COPD are more prone to frailty and decreased acceptance of their disease in comparison to patients with other chronic diseases

  19. Self-Regulatory Fatigue: A Missing Link in Understanding Fibromyalgia and Other Chronic MultiSymptom Illnesses.

    Science.gov (United States)

    Nes, Lise Solberg; Ehlers, Shawna L; Whipple, Mary O; Vincent, Ann

    2017-04-01

    Patients with chronic multisymptom illnesses such as fibromyalgia syndrome (FMS) are experiencing a multitude of physical and mental challenges. Facing such challenges may drain capacity to self-regulate, and research suggests patients with these illnesses may experience self-regulatory fatigue (SRF). This study sought to examine whether SRF can be associated with quality of life (QoL) in patients with FMS. Patients (N = 258) diagnosed with FMS completed self-report measures related to demographics, SRF (Self-Regulatory Fatigue 18 [SRF-18]), anxiety (Generalized Anxiety Disorder questionnaire [GAD-7]), depression (Patient Health Questionnaire [PHQ-9]), physical fatigue (Multidimensional Fatigue Inventory [MFI]), symptoms related to FMS (Fibromyalgia Impact Questionnaire [FIQ]), and QoL (36-Item Short-Form Health Survey [SF-36]). Hierarchical regressions showed higher SRF to be associated with lower QoL in terms of lower overall physical QoL, with subscales related to physical functioning, role limitations-physical, bodily pain, and general health (all P's > 0.001), as well as lower overall mental QoL, with subscales related to vitality, social functioning, role limitations-emotional, and mental health (all P's > 0.001). Including traditional predictors such as anxiety, depression, physical fatigue, and FMS-related symptoms as covariates in the analyses reduced the link between SRF and QoL somewhat, but the associations remained generally strong, particularly for SRF and mental QoL. This is the first study to show higher SRF relating to lower QoL for patients with FMS. Results suggest that SRF is distinct from anxiety, depression, and fatigue, and predicts QoL above and beyond these traditional factors in the area of chronic multisymptom illnesses such as FMS. SRF may be a "missing link" in understanding the complex nature of chronic multisymptom illnesses. © 2016 World Institute of Pain.

  20. Effects of Rural Medical Insurance on Chronically Ill Patients' Choice of the Same Hospital Again in Rural Northern China.

    Science.gov (United States)

    Jiang, Ke; You, Daming; Li, Zhendong; Wei, Wei; Mainstone, Mitchell

    2018-04-12

    The emergence of rural health insurance plays a crucial role in alleviating the pressure on rural medical expenditure. Under the current medical system in northern China, rural medical insurance may reduce the free referral of patients with chronic diseases among hospitals. This study was carried out based on the results of an investigation of rural chronically-ill patients in eight county hospitals in northern China, as well as through the comparison and analysis of patients with chronic diseases, considering whether they were with or without rural health insurance. The main results showed that both age ( χ 2 = 22.9, p rural peoples' willingness to buy health insurance. Meanwhile, both the quality of the hospital's treatment ( B = 0.555, p rural health insurance had weakened the three relationships upon which the aforementioned correlations were based.

  1. Professionals’ opinions on support for people with chronic illness in their roles as parents in mental or in general health care

    NARCIS (Netherlands)

    van der Ende, P.C.; Korevaar, E.L.; van Busschbach, J.T.; van Weeghel, J.

    2017-01-01

    Chronic illness affects a person’s wellbeing and affects the ability to perform the social roles of spouse or parent. When working with people with long-lasting mental or somatic illnesses, social workers and nurses are confronted with needs for support, especially for parents. Although programs are

  2. Professionals’ opinions on support for people with chronic illness in their roles as parents in mental or in general health care

    NARCIS (Netherlands)

    Van Der Ende, P.C.; Korevaar, L.; Van Busschbach, J.T.; Van Weeghel, J.

    Chronic illness affects a person’s wellbeing and affects the ability to perform the social roles of spouse or parent. When working with people with long-lasting mental or somatic illnesses, social workers and nurses are confronted with needs for support, especially for parents. Although programs are

  3. Negotiating health and chronic illness in Filipino-Australians: a qualitative study with implications for health promotion.

    Science.gov (United States)

    Maneze, Della; Ramjan, Lucie; DiGiacomo, Michelle; Everett, Bronwyn; Davidson, Patricia Mary; Salamonson, Yenna

    2018-08-01

    In spite of the healthy immigrant effect, the prevalence of lifestyle-related chronic diseases among migrants is reported to approximate that of the host country with longer duration of stay. For example, higher rates of chronic diseases such as Type 2 diabetes and hypertension have been observed among Filipino migrants and these have been linked to acculturation. The aim of this study was to explore the experiences of Filipino-Australian migrants in managing their chronic health conditions in a Western host country. This paper reports on qualitative findings of a mixed methods study that used an explanatory sequential design. Nine focus group discussions were undertaken with 58 Filipino-Australian migrants with chronic disease. Thematic analysis was undertaken using a five-stage general purpose thematic framework ensuring that themes closely identified key participants' experiences . Findings revealed that health benefits provided by the health system in Australia were considered advantageous. However, a lack of social and instrumental support compounded isolation and disempowerment, limiting self-management strategies for chronic illnesses. Cultural beliefs and practices influenced their knowledge, attitude to and management of chronic disease, which health service providers overlooked because of perceived acculturation and English language skills. Overall this study has clearly identified recognition of cultural beliefs, language needs and support as three core needs of Filipino-Australian migrants with the elderly the most vulnerable. This paper highlights that self-management of chronic disease among elderly Filipino immigrants may be adversely affected by host language difficulties, a lack of social support and cultural issues, impacting on access to services, health-seeking behaviours and participation in health promotion initiatives. Language, culture-specific health interventions and resources and enhancing social support are likely important strategies in

  4. Medication cost problems among chronically ill adults in the US: did the financial crisis make a bad situation even worse?

    Directory of Open Access Journals (Sweden)

    Piette JD

    2011-04-01

    Full Text Available John D Piette1, Ann Marie Rosland1, Maria J Silveira1, Rodney Hayward1, Colleen A McHorney21Ann Arbor VA Healthcare System, Ann Arbor, MI, USA; 2US Outcomes Research, Merck and Co, Inc, North Wales, PA, USAAbstract: A national internet survey was conducted between March and April 2009 among 27,302 US participants in the Harris Interactive Chronic Illness Panel. Respondents reported behaviors related to cost-related medication non-adherence (CRN and the impacts of medication costs on other aspects of their daily lives. Among respondents aged 40–64 and looking for work, 66% reported CRN in 2008, and 41% did not fill a prescription due to cost pressures. More than half of respondents aged 40–64 and nearly two-thirds of those in this group who were looking for work or disabled reported other impacts of medication costs, such as cutting back on basic needs or increasing credit card debt. More than one-third of respondents aged 65+ who were working or looking for work reported CRN. Regardless of age or employment status, roughly half of respondents reporting medication cost hardship said that these problems had become more frequent in 2008 than before the economic recession. These data show that many chronically ill patients, particularly those looking for work or disabled, reported greater medication cost problems since the economic crisis began. Given links between CRN and worse health, the financial downturn may have had significant health consequences for adults with chronic illness.Keywords: medication adherence, cost-of-care, access to care, chronic disease

  5. Overgeneral autobiographical memory and chronic interpersonal stress as predictors of the course of depression in adolescents.

    Science.gov (United States)

    Sumner, Jennifer A; Griffith, James W; Mineka, Susan; Rekart, Kathleen Newcomb; Zinbarg, Richard E; Craske, Michelle G

    2011-01-01

    This study investigated whether overgeneral autobiographical memory (OGM) predicts the course of depression in adolescents. As part of a larger longitudinal study of risk for emotional disorders, 55 adolescents with a past history of major depressive disorder or minor depressive disorder completed the Autobiographical Memory Test. Fewer specific memories predicted the subsequent onset of a major depressive episode (MDE) over a 16-month follow-up period, even when covarying baseline depressive symptoms. This main effect was qualified by an interaction between specific memories and chronic interpersonal stress: Fewer specific memories predicted greater risk of MDE onset over follow-up at high (but not low) levels of chronic interpersonal stress. Thus, our findings suggest that OGM, in interaction with chronic interpersonal stress, predicts the course of depression among adolescents, and highlight the importance of measuring interpersonal stress in OGM research. © 2010 Psychology Press, an imprint of the Taylor & Francis Group, an Informa business

  6. The changing face of chronic illness management in primary care: a qualitative study of underlying influences and unintended outcomes.

    Science.gov (United States)

    Hunt, Linda M; Kreiner, Meta; Brody, Howard

    2012-01-01

    Recently, there has been dramatic increase in the diagnosis and pharmaceutical management of common chronic illnesses. Using qualitative data collected in primary care clinics, we assessed how these trends play out in clinical care. This qualitative study focused on management of type 2 diabetes and hypertension in 44 primary care clinics in Michigan and was based on interviews with 58 clinicians and 70 of their patients, and observations of 107 clinical consultations. We assessed clinicians' treatment strategies and discussions of factors influencing treatment decisions, and patients' understandings and experiences in managing these illnesses. Clinicians focused on helping patients achieve test results recommended by national guidelines, and most reported combining 2 or more medications per condition to reach targets. Medication selection and management was the central focus of the consultations we observed. Polypharmacy was common among patients, with more than one-half taking 5 or more medications. Patient interviews indicated that heavy reliance on pharmaceuticals presents challenges to patient well-being, including financial costs and experiences of adverse health effects. Factors promoting heavy use of pharmaceuticals include lower diagnostic and treatment thresholds, clinician-auditing and reward systems, and the prescribing cascade, whereby more medications are prescribed to control the effects of already-prescribed medications. We present a conceptual model, the inverse benefit law, to provide insight into the impact of pharmaceutical marketing efforts on the observed trends. We make recommendations about limiting the influence of the pharmaceutical industry on clinical practice, toward improving the well-being of patients with chronic illness.

  7. "Helping my neighbour is like giving a loan…" -the role of social relations in chronic illness in rural Uganda.

    Science.gov (United States)

    Amurwon, Jovita; Hajdu, Flora; Yiga, Dominic Bukenya; Seeley, Janet

    2017-11-09

    Understanding individuals' experience of accessing care and tending to various other needs during chronic illness in a rural context is important for health systems aiming to increase access to healthcare and protect poor populations from unreasonable financial hardship. This study explored the impact on households of access to free healthcare and how they managed to meet needs during chronic illness. Rich data from the life stories of individuals from 22 households in rural south-western Uganda collected in 2009 were analysed. The data revealed that individuals and households depend heavily on their social relations in order to meet their needs during illness, including accessing the free healthcare and maintaining vital livelihood activities. The life stories illustrated ways in which households draw upon social relations to achieve the broader social protection necessary to prevent expenses becoming catastrophic, but also demonstrated the uncertainty in relying solely on informal relations. Improving access to healthcare in a rural context greatly depends on broader social protection. Thus, the informal social protection that already exists in the form of strong reciprocal social relations must be acknowledged, supported and included in health policy planning.

  8. Emotional conflict processing in adolescent chronic fatigue syndrome: A pilot study using functional magnetic resonance imaging

    OpenAIRE

    Bakke, Laura A Wortinger; Endestad, Tor; Melinder, Annika Maria D; Øie, Merete Glenne; Sulheim, Dag; Fagermoen, Frode Even; Wyller, Vegard Bruun

    2017-01-01

    Introduction: Studies of neurocognition suggest that abnormalities in cognitive control contribute to the pathophysiology of chronic fatigue syndrome (CFS) in adolescents, yet these abnormalities remain poorly understood at the neurobiological level. Reports indicate that adolescents with CFS are significantly impaired in conflict processing, a primary element of cognitive control. Method: In this study, we examine whether emotional conflict processing is altered on behavioral and neural leve...

  9. Altered food cue processing in chronically ill and recovered women with Anorexia Nervosa.

    Directory of Open Access Journals (Sweden)

    Nicole eSanders

    2015-02-01

    Full Text Available Anorexia Nervosa (AN is a severe mental disorder characterized by food restriction and weight loss.This study aimed to test the model posed by Brooks et al. (2012, that women suffering from chronic AN show decreased food cue processing activity in brain regions associated with energy balance and food reward (bottom-up; BU and increased activity in brain regions associated with cognitive control (top-down; TD when compared to long term recovered AN (REC and healthy controls (HC. Three groups of women, 15 AN (mean illness duration 7.8 ± 4.1 y, 14 REC (mean duration of recovery 4.7 ± 2.7 yr and 15 HC viewed alternating blocks of food and non-food images preceded by a short instruction during functional magnetic resonance imaging (fMRI, after fasting overnight. Functional ROIs (fROIs were defined in BU (e.g. striatum, hippocampus, amygdala, hypothalamus and cerebellum, TD (e.g. medial and lateral prefrontal cortex, anterior cingulate, the insula and visual processing areas (VPA. Food-cue processing activation was extracted from all fROIs and compared between the groups. In addition, functional connectivity between the fROIs was examined by modular partitioning of the correlation matrix of all fROIs.We could not confirm the hypothesis that BU areas are activated to a lesser extent in AN upon visual processing of food images. Among the BU areas the caudate showed higher activation in both patient groups compared to HC. In accordance with Brooks et al.’s model, we did find evidence for increased TD control in AN and REC. The functional connectivity analysis yielded two clusters in HC and REC, but three clusters in AN. In HC fROIs across BU, TD and VPA areas clustered, in AN one cluster span across BU, TD and insula, one across BU, TD and VPA areas and one was confined to the VPA network. In REC BU, TD and VPA or VPA and insula clustered.In conclusion, despite weight recovery, neural processing of food cues is also altered in recovered AN patient

  10. Chronic fatigue syndrome: illness severity, sedentary lifestyle, blood volume and evidence of diminished cardiac function.

    Science.gov (United States)

    Hurwitz, Barry E; Coryell, Virginia T; Parker, Meela; Martin, Pedro; Laperriere, Arthur; Klimas, Nancy G; Sfakianakis, George N; Bilsker, Martin S

    2009-10-19

    The study examined whether deficits in cardiac output and blood volume in a CFS (chronic fatigue syndrome) cohort were present and linked to illness severity and sedentary lifestyle. Follow-up analyses assessed whether differences in cardiac output levels between CFS and control groups were corrected by controlling for cardiac contractility and TBV (total blood volume). The 146 participants were subdivided into two CFS groups based on symptom severity data, severe (n=30) and non-severe (n=26), and two healthy non-CFS control groups based on physical activity, sedentary (n=58) and non-sedentary (n=32). Controls were matched to CFS participants using age, gender, ethnicity and body mass. Echocardiographic measures indicated that the severe CFS participants had 10.2% lower cardiac volume (i.e. stroke index and end-diastolic volume) and 25.1% lower contractility (velocity of circumferential shortening corrected by heart rate) than the control groups. Dual tag blood volume assessments indicated that the CFS groups had lower TBV, PV (plasma volume) and RBCV (red blood cell volume) than control groups. Of the CFS subjects with a TBV deficit (i.e. > or = 8% below ideal levels), the mean+/-S.D. percentage deficit in TBV, PV and RBCV were -15.4+/-4.0, -13.2+/-5.0 and -19.1+/-6.3% respectively. Lower cardiac volume levels in CFS were substantially corrected by controlling for prevailing TBV deficits, but were not affected by controlling for cardiac contractility levels. Analyses indicated that the TBV deficit explained 91-94% of the group differences in cardiac volume indices. Group differences in cardiac structure were offsetting and, hence, no differences emerged for left ventricular mass index. Therefore the findings indicate that lower cardiac volume levels, displayed primarily by subjects with severe CFS, were not linked to diminished cardiac contractility levels, but were probably a consequence of a co-morbid hypovolaemic condition. Further study is needed to address

  11. Limited concordance between teachers, parents and healthcare professionals on the presence of chronic diseases in ID-adolescents

    NARCIS (Netherlands)

    Oeseburg, B.; Jansen, D. E. M. C.; Reijneveld, S. A.; Dijkstra, G. J.; Groothoff, J. W.

    2010-01-01

    Evidence on teachers' knowledge about somatic and mental chronic diseases among ID-adolescent compared to the knowledge parents and healthcare professionals have, is limited. The aim of this study is: (1) to assess the knowledge of teachers on the presence of chronic diseases in ID-adolescents; (2)

  12. Early signaling, referral, and treatment of adolescent chronic pain: a study protocol

    Directory of Open Access Journals (Sweden)

    Voerman Jessica S

    2012-06-01

    Full Text Available Abstract Background Chronic pain is prevalent among young people and negatively influences their quality of life. Furthermore, chronic pain in adolescence may persist into adulthood. Therefore, it is important early on to promote the self-management skills of adolescents with chronic pain by improving signaling, referral, and treatment of these youngsters. In this study protocol we describe the designs of two complementary studies: a signaling study and an intervention study. Methods and design The signaling study evaluates the Pain Barometer, a self-assessed signaling instrument for chronic pain in adolescents. To evaluate the feasibility of the Pain Barometer, the experiences of youth-health care nurses will be evaluated in semi-structured interviews. Also, we will explore the frequencies of referral per health-care provider. The intervention study evaluates Move It Now, a guided self-help intervention via the Internet for teenagers with chronic pain. This intervention uses cognitive behavioural techniques, including relaxation exercises and positive thinking. The objective of the intervention is to improve the ability of adolescents to cope with pain. The efficacy of Move It Now will be examined in a randomized controlled trial, in which 60 adolescents will be randomly assigned to an experimental condition or a waiting list control condition. Discussion If the Pain Barometer is proven to be feasible and Move It Now appears to be efficacious, a health care pathway can be created to provide the best tailored treatment promptly to adolescents with chronic pain. Move It Now can be easily implemented throughout the Netherlands, as the intervention is Internet based. Trial registration Dutch Trial Register NTR1926

  13. Predictors of chronic food insecurity among adolescents in Southwest Ethiopia: a longitudinal study

    Directory of Open Access Journals (Sweden)

    Belachew Tefera

    2012-08-01

    Full Text Available Abstract Background Evidence on the differential impacts of the global food crisis as it translates into chronic food insecurity locally is essential to design food security interventions targeting the most vulnerable population groups. There are no studies on the extent of chronic food insecurity or its predictors among adolescents in developing countries. In the context of increased food prices in Ethiopia, we hypothesized that adolescents in low income urban households are more likely to suffer from chronic food insecurity than those in the rural areas who may have direct access to agricultural products. Methods This report is based on data from the first two rounds of the Jimma Longitudinal Family Survey of Youth (JLFSY. Both adolescents and households were selected using a stratified random sampling method. A total of 1911 adolescents aged 13-17 years were interviewed on their personal experiences of food insecurity both at baseline and at year two. Multivariable logistic regression analyses were used to compare chronic adolescent food insecurity by household income, household food insecurity, and socio-demographic variables after one year of follow-up. Results Overall, 20.5% of adolescents were food insecure in the first round survey, while the proportion of adolescents with food insecurity increased to 48.4% one year later. During the one year follow up period, more than half (54.8% of the youth encountered transient food insecurity – that is, either during the first or the second round survey. During the follow up period, 14.0% of adolescents had chronic food insecurity (i.e. were food insecure at both rounds. Multivariable logistic regression analysis showed that adolescents in the urban households with low (OR = 1.69, P = 0.008 and middle (OR = 1.80, P = 0.003 income tertiles were nearly twice as likely to suffer from chronic food insecurity compared with those in high income tertile, while this was not the case in

  14. Self-reported medical, medication and laboratory error in eight countries: risk factors for chronically ill adults.

    Science.gov (United States)

    Scobie, Andrea

    2011-04-01

    To identify risk factors associated with self-reported medical, medication and laboratory error in eight countries. The Commonwealth Fund's 2008 International Health Policy Survey of chronically ill patients in eight countries. None. A multi-country telephone survey was conducted between 3 March and 30 May 2008 with patients in Australia, Canada, France, Germany, the Netherlands, New Zealand, the UK and the USA who self-reported being chronically ill. A bivariate analysis was performed to determine significant explanatory variables of medical, medication and laboratory error (P error: age 65 and under, education level of some college or less, presence of two or more chronic conditions, high prescription drug use (four+ drugs), four or more doctors seen within 2 years, a care coordination problem, poor doctor-patient communication and use of an emergency department. Risk factors with the greatest ability to predict experiencing an error encompassed issues with coordination of care and provider knowledge of a patient's medical history. The identification of these risk factors could help policymakers and organizations to proactively reduce the likelihood of error through greater examination of system- and organization-level practices.

  15. Does Chronic Unpredictable Stress during Adolescence Affect Spatial Cognition in Adulthood?

    Science.gov (United States)

    Chaby, Lauren E; Sheriff, Michael J; Hirrlinger, Amy M; Lim, James; Fetherston, Thomas B; Braithwaite, Victoria A

    2015-01-01

    Spatial abilities allow animals to retain and cognitively manipulate information about their spatial environment and are dependent upon neural structures that mature during adolescence. Exposure to stress in adolescence is thought to disrupt neural maturation, possibly compromising cognitive processes later in life. We examined whether exposure to chronic unpredictable stress in adolescence affects spatial ability in late adulthood. We evaluated spatial learning, reference and working memory, as well as long-term retention of visuospatial cues using a radial arm water maze. We found that stress in adolescence decreased the rate of improvement in spatial learning in adulthood. However, we found no overall performance impairments in adult reference memory, working memory, or retention caused by adolescent-stress. Together, these findings suggest that adolescent-stress may alter the strategy used to solve spatial challenges, resulting in performance that is more consistent but is not refined by incorporating available spatial information. Interestingly, we also found that adolescent-stressed rats showed a shorter latency to begin the water maze task when re-exposed to the maze after an overnight delay compared with control rats. This suggests that adolescent exposure to reoccurring stressors may prepare animals for subsequent reoccurring challenges. Overall, our results show that stress in adolescence does not affect all cognitive processes, but may affect cognition in a context-dependent manner.

  16. How does social comparison within a self-help group influence adjustment to chronic illness? A longitudinal study.

    Science.gov (United States)

    Dibb, Bridget; Yardley, Lucy

    2006-09-01

    Despite the growing popularity of self-help groups for people with chronic illness, there has been surprisingly little research into how these may support adjustment to illness. This study investigated the role that social comparison, occurring within a self-help group, may play in adjustment to chronic illness. A model of adjustment based on control process theory and response shift theory was tested to determine whether social comparisons predicted adjustment after controlling for the catalyst for adjustment (disease severity) and antecedents (demographic and psychological factors). A sample of 301 people with Ménière's disease who were members of the Ménière's Society UK completed questionnaires at baseline and 10-month follow-up assessing adjustment, defined for this study as functional and goal-oriented quality of life. At baseline, they also completed measures of the predictor variables i.e. the antecedents (age, sex, living circumstances, duration of self-help group membership, self-esteem, optimism and perceived control over illness), the catalyst (severity of vertigo, tinnitus, hearing loss and fullness in the ear) and mechanisms of social comparison within the self-help group. The social comparison variables included the extent to which self-help group resources were used, and whether reading about other members' experiences induced positive or negative feelings. Cross-sectional results showed that positive social comparison was indeed associated with better adjustment after controlling for all the other baseline variables, while negative social comparison was associated with worse adjustment. However, greater levels of social comparison at baseline were associated with a deteriorating quality of life over the 10-month follow-up period. Alternative explanations for these findings are discussed.

  17. Exploring views on satisfaction with life in young children with chronic illness: an innovative approach to the collection of self-report data from children under 11

    NARCIS (Netherlands)

    Christie, D.; Romano, G.; Barnes, J.; Madge, N.; Nicholas, D.B.; Koot, H.M.; Armstrong, D.F.; Shevlin, M.; Kantaris, X.; Khatun, H.; Sutcliffe, A.G.

    2012-01-01

    The objective of this study was to explore young children's views on the impact of chronic illness on their life in order to inform future development of a patient-based self-report health outcome measure. We describe an approach to facilitating self-report views from young children with chronic

  18. Psychosis in epilepsy patients and other chronic medically ill patients and the role of cerebral pathology in the onset of psychosis: A clinical epidemiological study

    NARCIS (Netherlands)

    van der Feltz-Cornelis, C.M.; Aldenkamp, A.P.; Adèr, H.J.; Boenink, A.; Linszen, D.; van Dyck, R.

    2008-01-01

    Background In a 3-year epidemiological survey (N = 2623) prevalence of psychosis in epilepsy patients as compared with other chronic medically ill patients is assessed. Aim To explore the role of cerebral pathology as compared to the role of chronic burden of disease in the onset of psychosis.

  19. Psychosis in epilepsy patients and other chronic medically ill patients and the role of cerebral pathology in the onset of psychosis: A clinical epidemiological study

    NARCIS (Netherlands)

    van der Feltz-Cornelis, C.M.; Aldenkamp, A.P.; Ader, H.J.; Boenink, A.D.; Linszen, D.; van Dyck, R.

    2008-01-01

    Background: In a 3-year epidemiological survey (N = 2623) prevalence of psychosis in epilepsy patients as compared with other chronic medically ill patients is assessed. Aim: To explore the role of cerebral pathology as compared to the role of chronic burden of disease in the onset of psychosis.

  20. Psychosis in epilepsy patients and other chronic medically ill patients and the role of cerebral pathology in the onset of psychosis: a clinical epidemiological study

    NARCIS (Netherlands)

    van der Feltz-Cornelis, C. M.; Aldenkamp, A. P.; Adèr, H. J.; Boenink, A.; Linszen, D.; van Dyck, R.

    2008-01-01

    BACKGROUND: In a 3-year epidemiological survey (N=2623) prevalence of psychosis in epilepsy patients as compared with other chronic medically ill patients is assessed. AIM: To explore the role of cerebral pathology as compared to the role of chronic burden of disease in the onset of psychosis.

  1. The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children.

    Science.gov (United States)

    Ferro, Mark A; Boyle, Michael H

    2015-01-01

    The present study extends earlier research identifying an increased risk of anxiety among children with chronic physical illness (CwCPI) by examining a more complete model that explains how physical illness leads to increased symptoms of anxiety and depression. We tested a stress-generation model linking chronic physical illness to symptoms of anxiety and depression in a population-based sample of children aged 10 to 15 years. We hypothesized that having a chronic physical illness would be associated with more symptoms of anxiety and depression, increased levels of maternal depressive symptoms, more family dysfunction, and lower self-esteem; and, that maternal depressive symptoms, family dysfunction, and child self-esteem would mediate the influence of chronic physical illness on symptoms of anxiety and depression. Data came from the National Longitudinal Survey of Children and Youth (N = 10,646). Mediating processes were analyzed using latent growth curve modeling. Childhood chronic physical illness was associated with increases in symptoms of anxiety and depression, β = 0.20, p self-esteem, and in turn, increases in symptoms of anxiety and depression. CwCPI are at-risk for symptoms of anxiety and depression. Some of this elevated risk appears to work through family processes and child self-esteem. This study supports the use of family-centered care approaches among CwCPI to minimize burden on families and promote healthy psychological development for children.

  2. Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children.

    Science.gov (United States)

    West, C A; Besier, T; Borth-Bruhns, T; Goldbeck, L

    2009-01-01

    Parents of chronically ill children face numerous burdens in daily life, which can impair their quality of life (QoL) significantly. Therefore in family-oriented rehabilitation, not only the children themselves, but also their parents receive interventions. These aim at stabilizing parents both mentally and physically to enable them to support their children in the best possible way. This study investigates the effects of an inpatient family-oriented rehabilitation program on the QoL of parents of chronically ill children. A consecutive sample of 231 mothers and 155 fathers of children suffering from cancer, cardiac diseases or cystic fibrosis participated in the study. In a prospective longitudinal study, parental QoL was repeatedly assessed using the Ulm Quality of Life Inventory for Parents (ULQIE) at three different time points: admission to the rehabilitation clinic, discharge after four weeks of inpatient treatment, and at a six-month follow-up. Parental QoL increased markedly during rehabilitation treatment (mothers eta (2)=.326, fathers eta (2)=.249). Moreover, six months after the intervention, parental quality of life was still markedly improved compared to baseline assessment (mothers eta (2)=.259, fathers eta (2)=.069). The child's diagnosis had no effect on the level and course of parental QoL. Taking part in family-oriented rehabilitation can improve the QoL of parents of children suffering from cancer, cardiac diseases or cystic fibrosis. Such programs could be expected to affect the way chronically ill children cope with their condition and this should be examined in future studies.

  3. Prevalence and clinical impact of cachexia in chronic illness in Europe, USA, and Japan: facts and numbers update 2016.

    Science.gov (United States)

    von Haehling, Stephan; Anker, Markus S; Anker, Stefan D

    2016-12-01

    Cachexia is a serious clinical consequence of almost all chronic diseases when reaching advanced stages. Its prevalence ranges from 5-15% in end-stage chronic heart failure to 50-80% in advanced malignant cancer. Cachexia is also frequently occurring in patients with chronic kidney disease, chronic obstructive pulmonary disease (COPD) or neurological diseases, and rheumatoid arthritis. Mortality rates of patients with cachexia range from 15-25% per year in severe COPD through 20-40% per year in patients with chronic heart failure or chronic kidney disease to 20-80% in cancer cachexia. In the industrialized world (North America, Europe, and Japan) where epidemiological data are to some degree available, the overall prevalence of cachexia (due to any disease and not necessarily associated with hospital admission) is growing with the growth of the chronic illness prevalence, and it currently affects around 0.5-1.0% of the population, i.e. around 6-12 million people. From this, one can estimate that 1.5-2 million deaths are occurring in patients with cachexia per year. It is also a very significant health problem in other parts of the globe, but epidemiological data are scarce. The multifactorial nature of cachexia is now much better understood, and particularly, the role of inflammatory mediators and the imbalance of anabolism and catabolism are considered important therapeutic targets. Several approaches to develop cachexia and muscle wasting treatments have failed to be successful in phase III clinical trials, but new approaches are in development. Given the high prevalence and very high mortality associated with cachexia, advances are urgently needed for patients worldwide.

  4. The Role of Human Milk Immunomodulators in Protecting Against Viral Bronchiolitis and Development of Chronic Wheezing Illness.

    Science.gov (United States)

    Dixon, Dani-Louise

    2015-07-07

    Infants who are breastfed are at an immunological advantage when compared with formula fed infants, evidenced by decreased incidence of infections and diminished propensity for long term conditions, including chronic wheeze and/or asthma. Exclusive breastfeeding reduces the duration of hospital admission, risk of respiratory failure and requirement for supplemental oxygen in infants hospitalised with bronchiolitis suggesting a potentially protective mechanism. This review examines the evidence and potential pathways for protection by immunomodulatory factors in human milk against the most common viral cause of bronchiolitis, respiratory syncytial virus (RSV), and subsequent recurrent wheeze in infants. Further investigations into the interplay between respiratory virus infections such as RSV and how they affect, and are affected by, human milk immunomodulators is necessary if we are to gain a true understanding of how breastfeeding protects many infants but not all against infections, and how this relates to long-term protection against conditions such as chronic wheezing illness or asthma.

  5. Emotional conflict processing in adolescent chronic fatigue syndrome: A pilot study using functional magnetic resonance imaging.

    Science.gov (United States)

    Wortinger, Laura Anne; Endestad, Tor; Melinder, Annika Maria D; Øie, Merete Glenne; Sulheim, Dag; Fagermoen, Even; Wyller, Vegard Bruun

    2017-05-01

    Studies of neurocognition suggest that abnormalities in cognitive control contribute to the pathophysiology of chronic fatigue syndrome (CFS) in adolescents, yet these abnormalities remain poorly understood at the neurobiological level. Reports indicate that adolescents with CFS are significantly impaired in conflict processing, a primary element of cognitive control. In this study, we examine whether emotional conflict processing is altered on behavioral and neural levels in adolescents with CFS and a healthy comparison group. Fifteen adolescent patients with CFS and 24 healthy adolescent participants underwent functional magnetic resonance imaging (fMRI) while performing an emotional conflict task that involved categorizing facial affect while ignoring overlaid affect labeled words. Adolescent CFS patients were less able to engage the left amygdala and left midposterior insula (mpINS) in response to conflict than the healthy comparison group. An association between accuracy interference and conflict-related reactivity in the amygdala was observed in CFS patients. A relationship between response time interference and conflict-related reactivity in the mpINS was also reported. Neural responses in the amygdala and mpINS were specific to fatigue severity. These data demonstrate that adolescent CFS patients displayed deficits in emotional conflict processing. Our results suggest abnormalities in affective and cognitive functioning of the salience network, which might underlie the pathophysiology of adolescent CFS.

  6. Acceptable care? Illness constructions, healthworlds, and accessible chronic treatment in South Africa.

    Science.gov (United States)

    Fried, Jana; Harris, Bronwyn; Eyles, John; Moshabela, Mosa

    2015-05-01

    Achieving equitable access to health care is an important policy goal, with access influenced by affordability, availability, and acceptability of specific services. We explore patient narratives from a 5-year program of research on health care access to examine relationships between social constructions of illness and the acceptability of health services in the context of tuberculosis treatment and antiretroviral therapy in South Africa. Acceptability of services seems particularly important to the meanings patients attach to illness and care, whereas-conversely-these constructions appear to influence what constitutes acceptability and hence affect access to care. We highlight the underestimated role of individually, socially, and politically constructed healthworlds; traditional and biomedical beliefs; and social support networks. Suggested policy implications for improving acceptability and hence overall health care access include abandoning patronizing approaches to care and refocusing from treating "disease" to responding to "illness" by acknowledging and incorporating patients' healthworlds in patient-provider interactions. © The Author(s) 2015.

  7. Association between nutritional status and subjective health status in chronically ill children attending special schools

    NARCIS (Netherlands)

    K.F.M. Joosten (Koen); K. van der Velde (Kelly); P. Joosten (Pieter); H. Rutten (Hans); J.M. Hulst (Jessie); K. Dulfer (Karolijn)

    2016-01-01

    textabstractPurpose: In hospitalized children with a chronic disease, malnutrition was associated with a lower subjective health status. In outpatient children with a chronic disease attending special schools, this association has never been studied. The aim of this study was to assess the

  8. Chronic intermittent ethanol exposure in early adolescent and adult male rats: effects on tolerance, social behavior, and ethanol intake.

    Science.gov (United States)

    Broadwater, Margaret; Varlinskaya, Elena I; Spear, Linda P

    2011-08-01

    Given the prevalence of alcohol use in adolescence, it is important to understand the consequences of chronic ethanol exposure during this critical period in development. The purpose of this study was to assess possible age-related differences in susceptibility to tolerance development to ethanol-induced sedation and withdrawal-related anxiety, as well as voluntary ethanol intake after chronic exposure to relatively high doses of ethanol during adolescence or adulthood. Juvenile/adolescent and adult male Sprague-Dawley rats were assigned to one of five 10-day exposure conditions: chronic ethanol (4 g/kg every 48 hours), chronic saline (equivalent volume every 24 hours), chronic saline/acutely challenged with ethanol (4 g/kg on day 10), nonmanipulated/acutely challenged with ethanol (4 g/kg on day 10), or nonmanipulated. For assessment of tolerance development, duration of the loss of righting reflex (LORR) and blood ethanol concentrations (BECs) upon regaining of righting reflex (RORR) were tested on the first and last ethanol exposure days in the chronic ethanol group, with both saline and nonmanipulated animals likewise challenged on the last exposure day. Withdrawal-induced anxiety was indexed in a social interaction test 24 hours after the last ethanol exposure, with ethanol-naïve chronic saline and nonmanipulated animals serving as controls. Voluntary intake was assessed 48 hours after the chronic exposure period in chronic ethanol, chronic saline an