Psychological interventions for parents of children and adolescents with chronic illness

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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

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

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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.

School Psychologists' Role Concerning Children with Chronic Illnesses in Schools

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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…

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

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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.

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

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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.

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

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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.

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

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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.

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

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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.

[Children of mentally ill parents: the impact of parental psychiatric diagnosis, comorbidity, severity and chronicity on the well-being of children].

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Wiegand-Grefe, S; Geers, P; Petermann, F; Plass, A

2011-01-01

Children of mentally ill parents are known as a high-risk population for the development of psychological disturbances. In this study, the psychiatric diagnoses, the severity and chronicity and the comorbidity of a parental mental illness as well as the non-specific parameters were examined in terms of their influence on the children's mental health. n = 62 children of psychiatric inpatients were examined regarding their psychic symptomatology, assessed with the CBCL-Parent Report Form. The psychiatric ICD-10 diagnoses and comorbidities as well as the severity (CGI) of the mentally ill parents were collected from psychiatric assessment forms. Children of parents with personality disorders (PD) are evaluated as highly affected by their parents, regardless of whether the PD is the primary or the comorbid diagnosis. Children of parents suffering from addictive disorders are seen as the least affected by their parents. Overall, children of parents with multiple diagnoses tend to be rated as more affected. Severity of illness and chronicity do not have a considerable impact on the children's development of mental health problems. Strikingly, children with a high length of exposure to a parental illness are psychologically less affected than children with shorter times of exposure. Thus, children possibly acquire effective coping mechanisms with increasing time of exposure. The results reveal the necessity of preventive programmes, especially in case of personality disorders. In addition the necessity for external assessment of the children becomes clear, especially in those cases where the parents exhibit a poor acceptance of their disease. © Georg Thieme Verlag KG Stuttgart · New York.

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

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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.

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

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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

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...

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

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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…

Anxiety in Medically Ill Children/Adolescents

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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...

The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children.

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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.

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

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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…

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...

Comparative Study of the Relationship between Spiritual Well-being and Sense of Coherence in Mothers with Chronically Ill Children in Kerman, Iran, in 2016

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Nosrat Avaznejad

2017-07-01

Full Text Available This study aimed to investigate the relationship between spiritual well-being and sense of coherence in the mothers having children with chronic diseases. To this end, a controlled cross-sectional evaluation was conducted on 300 mothers, divided into two groups of 150 cases with healthy and chronically ill children in the city of Kerman, Iran, in 2016. The data were collected using the Platosin and Alison's Spiritual Wellbeing Scale and Atonovesky’s Sense of Coherence Scale. The mean ages of the mothers with healthy children and those with chronically ill children were 36.1±4.6 and 37.7±6.2 years, respectively. The linear regression analysis showed that by controlling the effect of the groups (i.e., the mother with a healthy or chronically ill child, the spiritual well-being score had a significant impact on the sense of coherence (P=0.001. It was concluded that the promotion of spiritual well-being, especially existential well-being, could potentially develop the sense of coherence in the mothers with chronically ill children by helping them better control the diseases of their children.

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.

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

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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…

Impact of a family-oriented rehabilitation programme on behavioural and emotional problems in healthy siblings of chronically ill children.

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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.

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

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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.

Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children.

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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.

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

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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

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

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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…

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

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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.

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

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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

Psychopathology and self-esteem in chronic illness.

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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.

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

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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.

Specialist home-based nursing services for children with acute and chronic illnesses.

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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

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

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.

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.

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.

Impact of chronic illness timing and persistence at school entry on child and parent outcomes: Australian longitudinal study.

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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

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.

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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

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

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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.

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\\

Divorce and Childhood Chronic Illness: A Grounded Theory of Trust, Gender, and Third-Party Care Providers.

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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.

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.

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

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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.

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

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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…

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

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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.

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

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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.

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

A cognitive behavioral based group intervention for children with a chronic illness and their parents: a multicentre randomized controlled trial

Directory of Open Access Journals (Sweden)

Schuengel Carlo

2011-07-01

Full Text Available Abstract Background 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 intervention program may enhance the use of learned coping strategies in daily life, especially on the long-term. The primary aim of the present study is to examine the effectiveness of a cognitive behavioral based group intervention (called 'Op Koers' 1 for children with CI and of a parallel intervention for their parents. A secondary objective is to investigate why and for whom this intervention works, in order to understand the underlying mechanisms of the intervention effect. Methods/design This study is a multicentre randomized controlled trial. Participants are children (8 to 18 years of age with a chronic illness, and their parents, recruited from seven participating hospitals in the Netherlands. Participants are randomly allocated to two intervention groups (the child intervention group and the child intervention combined with a parent program and a wait-list control group. Primary outcomes are child psychosocial functioning, wellbeing and child disease related coping skills. Secondary outcomes are child quality of life, child general coping skills, child self-perception, parental stress, quality of parent-child interaction, and parental perceived vulnerability. Outcomes are evaluated at baseline, after 6 weeks of treatment, and at a 6 and 12-month follow-up period. The analyses will be performed on the basis of an intention-to-treat population. Discussion This study evaluates the effectiveness of a group intervention improving psychosocial functioning in children with CI and their parents. If proven effective, the intervention will be implemented in clinical practice. Strengths and limitations of the study design are discussed

Play as a mechanism of working through medical trauma for children with medical illnesses and their siblings.

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Nabors, Laura; Bartz, Jennifer; Kichler, Jessica; Sievers, Rebecca; Elkins, Rebecca; Pangallo, Jordan

2013-09-01

Children's reactions to medical trauma have been recorded through play. In this study, participants were 15 children with medical illnesses, 14 siblings of children with a medical illness, and 6 children in the community who did not have any ill family members. Children participated in play groups and their play with medical toys was videotaped and coded for themes that would provide a window on their perspectives. The play of children with medical illnesses and siblings was similar. Medical play was a mechanism for imaginal coping and working through stress related to medical experiences. In contrast, children in the comparison group did not engage in much medical play and when they did, they did not demonstrate a rich play experience with detailed medical stories. Future research should focus on ways to use play therapy techniques to help medically ill children and their siblings cope with their feelings and reactions to medical events related to chronic illness.

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...

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

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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.

The etiological structure of diseases in frequently ill children depending on age

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A. S. Levina

2017-01-01

Full Text Available The urgency of the problem of frequently ill children is associated with a significant number of patients who can be assigned to this category. Objective: to present the nosological and etiological structure of diseases in frequently ill children depending on age.Subjects and methods. 243 children aged 1 to 17 years with recurrent respiratory infections were followed up. The children were examined using routine clinical, laboratory, and instrumental examinations. The etiological diagnosisincluded bacteriological examination of the upperrespiratory tract microflora; determination of IgM and IgG antibodies against Chlamydophila pneumoniae, Mycoplasma pneumoniae, Epstein–Barr virus(EBV, and cytomegalovirus(CMV in blood by enzyme immunoassay and that of Chlamydia and Mycoplasma DNA in pharyngealswabs and that of CMV, EBV and human herpesvirustype 6 DNA in blood by polymerase chain reaction.Results. Recurrentrespiratory diseases were found to be associated with herpesvirusinfection in 75% of the children aged 1 to 6 years, with Streptococcus, Mycoplasma, and Chlamydia infections in 16, 10, and 4% of those aged 3 to 6 years, respectively, and to be accompanied by abnormal lymphoid tissue proliferation in 84% of the children aged 3 to 6 years, with the abundant growth of bacterial opportunistic pathogensin one half of the patients. Despite the continuing importance of infectious agents(herpesviruses and streptococci in 29 and 20%, respectively, the chronically ill school-aged children displayed a high incidence of somatic diseases: chronic tonsillitis (43% and chronic sinusitis (14% in children aged older than 12 years and allergic rhinitis (23% in those aged 7 to 17 years. The symptoms of autonomic vascular dystonia were observed in 21% of the patients; cardiac arrhythmias were diagnosed in 14%. 

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

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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…

A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system.

Science.gov (United States)

Hatzmann, Janneke; Maurice-Stam, Heleen; Heymans, Hugo S A; Grootenhuis, Martha A

2009-07-28

Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and disease related factors on parental HRQoL, mediated by employment, income, leisure time, holiday and emotional support in a comprehensive model. In a cross-sectional design, 543 parents of chronically ill children completed questionnaires. A conceptual model of parental HRQoL was developed. Structural equation modeling was performed to explore the relations in the conceptual model, and to test if the model fitted the data. The model fitted the data closely (CHISQ(14) = 11.37, p = 0.66; RMSEA = 0.0, 90%CI [0.00;0.034]. The effect of socio-demographic and medical data on HRQoL was mediated by days on holiday (MCS: beta = .21) and emotional support (PCS: beta = .14; MCS: beta = .28). Also, female gender (beta = -.10), age (beta = .10), being chronically ill as a parent (beta = -.34), and care dependency of the child (beta = -.14; beta = -.15) were directly related to parental HRQoL. The final model was slightly different from the conceptual model. Main factors explaining parental HRQoL seemed to be emotional support, care dependency, days on holiday and being chronically ill as a parent. Holiday and emotional support mediated the effect of demographic and disease-related factors on HRQoL. Hours of employment, leisure time and household income did not mediate between background characteristics and HRQoL, contrasting the hypotheses.

A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system

Directory of Open Access Journals (Sweden)

Heymans Hugo SA

2009-07-01

Full Text Available Abstract Background Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL. Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and disease related factors on parental HRQoL, mediated by employment, income, leisure time, holiday and emotional support in a comprehensive model. Methods In a cross-sectional design, 543 parents of chronically ill children completed questionnaires. A conceptual model of parental HRQoL was developed. Structural equation modeling was performed to explore the relations in the conceptual model, and to test if the model fitted the data. Results The model fitted the data closely (CHISQ(14 = 11.37, p = 0.66; RMSEA = 0.0, 90%CI [0.00;0.034]. The effect of socio-demographic and medical data on HRQoL was mediated by days on holiday (MCS: β = .21 and emotional support (PCS: β = .14; MCS: β = .28. Also, female gender (β = -.10, age (β = .10, being chronically ill as a parent (β = -.34, and care dependency of the child (β = -.14; β = -.15 were directly related to parental HRQoL. Conclusion The final model was slightly different from the conceptual model. Main factors explaining parental HRQoL seemed to be emotional support, care dependency, days on holiday and being chronically ill as a parent. Holiday and emotional support mediated the effect of demographic and disease-related factors on HRQoL. Hours of employment, leisure time and household income did not mediate between background characteristics and HRQoL, contrasting the hypotheses.

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

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.

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

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

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, ...

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

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.

Siblings of children with cystic fibrosis: quality of life and the impact of illness.

Science.gov (United States)

Havermans, T; Wuytack, L; Deboel, J; Tijtgat, A; Malfroot, A; De Boeck, C; Proesmans, M

2011-03-01

To asses self-reported quality of life (QoL) and perception of impact of illness on siblings of children with cystic fibrosis (CF). The Child Health Questionnaire was used to assess QoL. The Sibling Perception Questionnaire was used to assess impact of illness. Siblings of children with CF (n= 39) rated their QoL higher than siblings of healthy children on most QoL domains (e.g. Physical Functioning, Behavior, Mental Health). Siblings older than the child with CF reported a higher impact of CF than younger siblings. Perceived impact of illness was higher when the child with CF had been hospitalized or was intermittent or chronically infected with Pseudomonas aeruginosa. Siblings of children with CF reported a good QoL. QoL and impact of illness were related to indices of CF severity. Insight into sibling-issues helps CF teams to provide family-oriented care. © 2010 Blackwell Publishing Ltd.

Transfusion in critically ill children

DEFF Research Database (Denmark)

Secher, E L; Stensballe, J; Afshari, A

2013-01-01

Transfusion of blood products is a cornerstone in managing many critically ill children. Major improvements in blood product safety have not diminished the need for caution in transfusion practice. In this review, we aim to discuss the interplay between benefits and potential adverse effects...... of transfusion in critically ill children by including 65 papers, which were evaluated based on previously agreed selection criteria. Current practice on transfusing critically ill children is mainly founded on the basis of adult studies, common practices with cut-off values, and expert opinions, rather than...... evidence-based medicine. Paediatric patients have explicit physiological challenges and requirements to be addressed. Critically ill children often suffer from anaemia, have substantial iatrogenic blood loss with subsequent transfusions, and are at a higher risk of complications, often due to human errors...

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.

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.

A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system

NARCIS (Netherlands)

Hatzmann, Janneke; Maurice-Stam, Heleen; Heymans, Hugo S. A.; Grootenhuis, Martha A.

2009-01-01

BACKGROUND: Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and

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

Children's understanding of mental illness: an exploratory study.

Science.gov (United States)

Fox, C; Buchanan-Barrow, E; Barrett, M

2008-01-01

This study aimed to investigate children's thinking about mental illness by employing a well-established framework of adult illness understanding. The study adopted a semistructured interview technique and a card selection task to assess children's responses to causes, consequences, timeline and curability of the different types of mental illness. The children were aged between 5 and 11 years. Results indicated a developmental trend in the children's thinking about mental illness; there was an increase in the children's understanding of the causes, consequences, curability and timeline of mental illness with age. The older children demonstrated a more sophisticated and accurate thinking about mental illness compared with the younger children, who tended to rely on a medical model in order to comprehend novel mental illnesses. Furthermore, the girls exhibited more compassion, showing greater social acceptance compared with the boys. The Leventhal model provides a useful framework within which to investigate children's knowledge and understanding of mental illness. Limitations of the study and implications for future research are discussed.

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.…

Clinical Pharmacology Studies in Critically Ill Children

Science.gov (United States)

Thakkar, Nilay; Salerno, Sara; Hornik, Christoph P.; Gonzalez, Daniel

2016-01-01

Developmental and physiological changes in children contribute to variation in drug disposition with age. Additionally, critically ill children suffer from various life-threatening conditions that can lead to pathophysiological alterations that further affect pharmacokinetics (PK). Some factors that can alter PK in this patient population include variability in tissue distribution caused by protein binding changes and fluid shifts, altered drug elimination due to organ dysfunction, and use of medical interventions that can affect drug disposition (e.g., extracorporeal membrane oxygenation and continuous renal replacement therapy). Performing clinical studies in critically ill children is challenging because there is large inter-subject variability in the severity and time course of organ dysfunction; some critical illnesses are rare, which can affect subject enrollment; and critically ill children usually have multiple organ failure, necessitating careful selection of a study design. As a result, drug dosing in critically ill children is often based on extrapolations from adults or non-critically ill children. Dedicated clinical studies in critically ill children are urgently needed to identify optimal dosing of drugs in this population. This review will summarize the effect of critical illness on pediatric PK, the challenges associated with performing studies in this vulnerable subpopulation, and the clinical PK studies performed to date for commonly used drugs. PMID:27585904

Books for siblings of children having illness or disability.

Science.gov (United States)

Ahmann, E

1997-01-01

A child's disability or acute or chronic illness has an effect on all family members, including siblings of the affected child. Children's books, fiction and non-fiction, can be used to support siblings by providing information, addressing feelings, offering insight, assuring the child that others have had similar problems, and facilitating coping. Nurses can introduce children and their families to useful books by having books or book covers on display that the child can choose from; providing families with lists of books; and/or assessing the child's needs, interests and reading level, and recommending a specific title.

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.

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.

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.

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

Summarizing activity limitations in children with chronic illnesses living in the community: a measurement study of scales using supplemented interRAI items

Directory of Open Access Journals (Sweden)

Phillips Charles D

2012-01-01

Full Text Available Abstract Background To test the validity and reliability of scales intended to measure activity limitations faced by children with chronic illnesses living in the community. The scales were based on information provided by caregivers to service program personnel almost exclusively trained as social workers. The items used to measure activity limitations were interRAI items supplemented so that they were more applicable to activity limitations in children with chronic illnesses. In addition, these analyses may shed light on the possibility of gathering functional information that can span the life course as well as spanning different care settings. Methods Analyses included testing the internal consistency, predictive, concurrent, discriminant and construct validity of two activity limitation scales. The scales were developed using assessment data gathered in the United States of America (USA from over 2,700 assessments of children aged 4 to 20 receiving Medicaid Early and Periodic Screening, Diagnostic and Treatment (EPSDT services, specifically Personal Care Services to assist children in overcoming activity limitations. The Medicaid program in the USA pays for health care services provided to children in low-income households. Data were collected in a single, large state in the southwestern USA in late 2008 and early 2009. A similar sample of children was assessed in 2010, and the analyses were replicated using this sample. Results The two scales exhibited excellent internal consistency. Evidence on the concurrent, predictive, discriminant, and construct validity of the proposed scales was strong. Quite importantly, scale scores were not correlated with (confounded with a child's developmental stage or age. The results for these scales and items were consistent across the two independent samples. Conclusions Unpaid caregivers, usually parents, can provide assessors lacking either medical or nursing training with reliable and valid information

Summarizing activity limitations in children with chronic illnesses living in the community: a measurement study of scales using supplemented interRAI items.

Science.gov (United States)

Phillips, Charles D; Patnaik, Ashweeta; Moudouni, Darcy K; Naiser, Emily; Dyer, James A; Hawes, Catherine; Fournier, Constance J; Miller, Thomas R; Elliott, Timothy R

2012-01-23

To test the validity and reliability of scales intended to measure activity limitations faced by children with chronic illnesses living in the community. The scales were based on information provided by caregivers to service program personnel almost exclusively trained as social workers. The items used to measure activity limitations were interRAI items supplemented so that they were more applicable to activity limitations in children with chronic illnesses. In addition, these analyses may shed light on the possibility of gathering functional information that can span the life course as well as spanning different care settings. Analyses included testing the internal consistency, predictive, concurrent, discriminant and construct validity of two activity limitation scales. The scales were developed using assessment data gathered in the United States of America (USA) from over 2,700 assessments of children aged 4 to 20 receiving Medicaid Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services, specifically Personal Care Services to assist children in overcoming activity limitations. The Medicaid program in the USA pays for health care services provided to children in low-income households. Data were collected in a single, large state in the southwestern USA in late 2008 and early 2009. A similar sample of children was assessed in 2010, and the analyses were replicated using this sample. The two scales exhibited excellent internal consistency. Evidence on the concurrent, predictive, discriminant, and construct validity of the proposed scales was strong. Quite importantly, scale scores were not correlated with (confounded with) a child's developmental stage or age. The results for these scales and items were consistent across the two independent samples. Unpaid caregivers, usually parents, can provide assessors lacking either medical or nursing training with reliable and valid information on the activity limitations of children. One can summarize these

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

The children of mentally ill parents.

Science.gov (United States)

Mattejat, Fritz; Remschmidt, Helmut

2008-06-01

The children of mentally ill parents have a higher risk of developing mental illnesses themselves over the course of their lives. This known risk must be taken into account in the practical provision of health care. Selective literature review. The increased psychiatric risk for children of mentally ill parents is due partly to genetic influences and partly to an impairment of the parent-child interaction because of the parent's illness. Furthermore, adverse factors are more frequent in these families, as well as a higher risk for child abuse. Genetic and psychosocial factors interact with one another. For example, genetic factors moderate environmental effects; that is, the effect of adverse environmental factors depends on the genetic substrate. Preventive measures for children of mentally ill parents urgently need improvement. In this article, positively evaluated programs of preventive measures are discussed. Essential prerequisites for success include appropriate, specialized treatment of the parental illness, psychoeducative measures, and special support (e.g. self-help groups) as indicated by the family's particular needs.

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.

Shared decision making among parents of children with mental health conditions compared to children with chronic physical conditions.

Science.gov (United States)

Butler, Ashley M; Elkins, Sara; Kowalkowski, Marc; Raphael, Jean L

2015-02-01

High quality care in pediatrics involves shared decision making (SDM) between families and providers. The extent to which children with common mental health disorders experience SDM is not well known. The objectives of this study were to examine how parent-reported SDM varies by child health (physical illness, mental health condition, and comorbid mental and physical conditions) and to examine whether medical home care attenuates any differences. We analyzed data on children (2-17 years) collected through the 2009/2010 National Survey of Children with Special Health Care Needs. The sample consisted of parents of children in one of three child health categories: (1) children with a chronic physical illness but no mental health condition; (2) children with a common mental health condition but no chronic physical condition; and (3) children with comorbid mental and chronic physical conditions. The primary dependent variable was parent-report of provider SDM. The primary independent variable was health condition category. Multivariate linear regression analyses were conducted. Multivariate analyses controlling for sociodemographic variables and parent-reported health condition impact indicated lower SDM among children with a common mental health condition-only (B = -0.40; p mental health condition-only were no longer significant in the model adjusting for medical home care. However, differences in SDM for children with comorbid conditions persisted after adjusting for medical home care. Increasing medical home care may help mitigate differences in SDM for children with mental health conditions-only. Other interventions may be needed to improve SDM among children with comorbid mental and physical conditions.

Children of Parents With Chronic Noncancer Pain: A Comprehensive Review of the Literature.

Science.gov (United States)

Umberger, Wendy

2014-02-01

Chronic noncancer pain (CNCP) is a prevalent occurrence and is experienced by adults in their child-rearing years. Somatic or psychiatric illness in a parent constitutes a potential threat to the physical, mental health, and normative development in children. A comprehensive review of the literature was performed to answer the question: What are the effects of parental CNCP on children in the family system? The search was performed using the Cumulative Index to Nursing and Allied Health Literature, Medline, PsycINFO, and Academic Search Premier. Search terms used were "parent pain or parent chronic pain or parent illness or parent chronic illness" and "child or adolescent or teenager." Inclusion and exclusion criteria were developed a priori. Eighteen articles (n = 18) met criteria and were included in the sample. Three clusters were identified: (a) child/adolescent somatic complaints or behavior; (b) child/adolescent internalizing or externalizing symptoms; and (c) important mediating and moderating variables. The results of this review show that children and adolescents whose parents suffer from CNCP are at risk for more and similar-to-parent pain complaints and greater degree of internalizing and externalizing symptoms than those with healthy parents. Implications for clinical nursing practice and research are given. © 2013 Wiley Periodicals, Inc.

Resilience among caregivers of children with chronic conditions: a concept analysis.

Science.gov (United States)

Lin, Fang-Yi; Rong, Jiin-Ru; Lee, Tzu-Ying

2013-08-29

The purpose of this concept analysis is to uncover the essential elements involved in caregivers' resilience in the context of caring for children with chronic conditions. Walker and Avant's methodology guided the analysis. The study includes a literature review of conceptual definitions of caregiver resilience in caring for children with chronic conditions. The defining attributes and correlates of caregiver resilience are reviewed. Concept analysis findings in a review of the nursing and health-related literature show that caregiver resilience in the context of caring for chronically ill children can be defined within four main dimensions, ie, disposition patterns, situational patterns, relational patterns, and cultural patterns. Empiric measurements of the impact of caregiver resilience applied to caregivers with children with chronic conditions are also reported in the analysis. The findings of this concept analysis could help nurses and health care providers to apply the concept of caregiver resilience in allied health care and be applied to further studies.

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…

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...

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.

Resilience among caregivers of children with chronic conditions: a concept analysis

Directory of Open Access Journals (Sweden)

Lin FY

2013-08-01

Full Text Available Fang-Yi Lin, Jiin-Ru Rong, Tzu-Ying Lee Department of Nursing, School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan, Republic of China Abstract: The purpose of this concept analysis is to uncover the essential elements involved in caregivers' resilience in the context of caring for children with chronic conditions. Walker and Avant's methodology guided the analysis. The study includes a literature review of conceptual definitions of caregiver resilience in caring for children with chronic conditions. The defining attributes and correlates of caregiver resilience are reviewed. Concept analysis findings in a review of the nursing and health-related literature show that caregiver resilience in the context of caring for chronically ill children can be defined within four main dimensions, ie, disposition patterns, situational patterns, relational patterns, and cultural patterns. Empiric measurements of the impact of caregiver resilience applied to caregivers with children with chronic conditions are also reported in the analysis. The findings of this concept analysis could help nurses and health care providers to apply the concept of caregiver resilience in allied health care and be applied to further studies. Keywords: caregiver resilience, children, chronic conditions, concept analysis

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.

Do the parent-child relationship and parenting behaviors differ between families with a child with and without chronic illness? A meta-analysis.

Science.gov (United States)

Pinquart, Martin

2013-08-01

The present meta-analysis compared the quality of the parent-child relationship as well as parenting behaviors and styles of families with a child with chronic physical illness with families of healthy children or test norms. Empirical studies were identified with the help of electronic databases and cross-referencing. Based on 325 included studies, random-effects meta-analysis was performed. Although most effect sizes were small or very small, the parent-child relationship tended to be less positive if a child had a chronic physical illness (g = -.16 standard deviation units). In addition, lower levels of parental responsiveness (emotional warmth; g = -.22) as well as higher levels of demandingness (control, monitoring; g = .18) and overprotection (g = .39) were observed in these families. However, effect sizes were heterogeneous and only significant for a limited number of diseases. There was also some evidence for higher levels of authoritarian (g = .24) and neglectful parenting (g = .51) as well as lower levels of authoritative parenting compared with families with healthy children (g = -.13). Effect sizes varied, in part, by length of illness, child age, rater, assessment method, and target of comparison. We conclude that most families with a child with chronic physical illness adapt well with regard to the parent-child relationship and parenting behaviors/styles. Nonetheless, some families of children with specific diseases-such as epilepsy, hearing impairment, and asthma-may have difficulties finding appropriate levels of protective behaviors, control, and parental warmth and building positive mutual relationships between parents and children.

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

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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.

Children coping with a serious illness

OpenAIRE

Pretzlik, Ursula

1996-01-01

A solid empirical base is needed to expand our understanding of coping in children who are seriously ill. The six studies reported were designed to describe the ways seriously ill children cope with their illness and treatment, and to explore factors (both individual and familial) which influence their coping. The choice of instniments and design were influenced by the Lazanis and Folkman transactional model of stress and coping (1984), especially their concept of coping. In the first study t...

Experiences of SKYPE Communication in Education and Research--Data Collection Concerning Young Children with Long-Term Illness

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Svensson, Agneta Simeonsdotter; Samuelsson, Ingrid Pramling; Hellström, Anna-Lena; Nolbris, Margaretha Jenholt

2014-01-01

The purpose of this paper is to provide knowledge about communication using SKYPE with young children with chronic illness; advantages and barriers are investigated related to education and data issues collection. A qualitative exploratory research method was applied to interviews and notes via SKYPE between children and their web teachers. The…

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

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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.

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

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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.

Florence Nightingale: her Crimean fever and chronic illness.

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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.

Illness in Children and Parental Response

NARCIS (Netherlands)

M.A. Bruijnzeels (Marc)

1997-01-01

textabstractMost children suffer from illnesses from time to time. In only a small part of these ill children parents decide to seek professional help. So, most child health care is carried out by parents. In general, this phenomenon is called the iceberg of symptoms. The part of the iceberg under

Are children with chronic illnesses requiring dietary therapy at risk for disordered eating or eating disorders? A systematic review.

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Conviser, Jenny H; Fisher, Sheehan D; McColley, Susanna A

2018-03-01

Pediatric chronic illnesses (CI) can affect a child's mental health. Chronic illnesses with treatment regimens that specify a therapeutic diet may place the child at increased risk for disordered eating and specific eating disorders (ED). The aim of this review is to examine the relation between diet-treated CI and disordered eating and to determine the order of onset to infer directionality. Diet-treated CI is hypothesized to precede and to be associated with disordered eating. A comprehensive search of empirical articles that examine the relation between diet-treated CI (diabetes, cystic fibrosis, celiac disease, gastrointestinal disorders, and inflammatory bowel diseases) and disordered eating was conducted in Medline and PsycINFO using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A table of the sample's characteristics, ED measures, major pertinent findings, and the onset of CI in relation to ED were provided. Diet-treated CI was associated with disordered eating and ED. Diet-treated CI had onset prior to disordered eating in most studies, except for inflammatory bowel diseases. Disordered eating and unhealthy weight management practices put children at risk for poor medical outcomes. Interventions for diet-treated CI require a focus on diet and weight, but may increase the risk for disordered eating. Future research is needed to elucidate the mechanisms that transform standard treatment practices into pathological eating, including characteristics and behaviors of the child, parents/care providers, family, and treatment providers. © 2018 Wiley Periodicals, Inc.

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).

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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.

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

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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

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.

Mental Illness in Children: Know the Signs

Science.gov (United States)

... how you can help. By Mayo Clinic Staff Mental illness in children can be hard for parents to ... help they need. Understand the warning signs of mental illness in children and how you can help your ...

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

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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. 

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

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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.

USE OF IMMUNOMODULATORS IN ACUTE RESPIRATORY INFECTION TREATMENT IN FREQUENTLY ILL CHILDREN

Directory of Open Access Journals (Sweden)

M.I. Ivardava

2011-01-01

Full Text Available Respiratory infections, relapses of ear, nose, throat infections, acute and chronic bronchial infections — these are the most common infantile infections. Regardless the wide range of medications, treatment of recurrent ENT and respiratory infections is not always effective especially in the group of frequently ill children. This article contains analysis of the necessity of immunomodulation therapy of recurrent respiratory infections as a part of complex prophylaxis and treatment of infants.Key words: children, acute respiratory infection, polyoxidonium, treatment.(Voprosy sovremennoi pediatrii — Current Pediatrics. 2011; 10 (3: 103–107

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.

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...

[Social Networks of Children with Mentally Ill Parents].

Science.gov (United States)

Stiawa, Maja; Kilian, Reinhold

2017-10-01

Social Networks of Children with Mentally Ill Parents Mental illness of parents can be a load situation for children. Supporting social relations might be an important source in such a situation. Social relations can be shown by social network analysis. Studies about social networks and mental health indicate differences regarding structure and potential for support when compared with social networks of healthy individuals. If and how mental illness of parents has an impact on their children's network is widely unknown. This systematic review shows methods and results of studies about social networks of children with mentally ill parents. By systematic search in electronic databases as well as manual search, two studies were found who met the target criteria. Both studies were conducted in the USA. Results of studies indicate that parental mental illness affects the state of mental health and social networks of children. Symptomatology of children changed due to perceived social support of network contacts. Impact of social support and strong network contacts seems to depend on age of children and the family situation. That's why support offers should be adapt to children's age. Focusing on social networks as potential resource for support and needs of the family affected seems appropriate during treatment.

Being hospitalized with a newly diagnosed chronic illness--a phenomenological study of children's lifeworld in the hospital.

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Ekra, Else Mari Ruberg; Gjengedal, Eva

2012-08-17

The impact of a hospital environment on children has rarely been investigated. Recently, however, the perspective of hospitalized children has been taken into account. Being hospitalized and facing an illness represent a dramatic change in a child's daily life, and the quality of the environment may influence the child's experiences. The aim of this study was to investigate the experiences of children being hospitalized with newly diagnosed type 1 diabetes and to obtain an increased understanding of the environmental influences on the children's lifeworld. The study used a hermeneutic phenomenological approach. The design is a combination of observation of the participant, interviews, and photographs. Nine children, aged between 7 and 12 years, participated in the study. The data were collected between October 2008 and February 2010 and analysed in accordance with thematic analysis as described by van Manen. The children experienced change through recognition and adaptation. They perceived the environment as strange but still comfortable because of the "child-friendly" atmosphere, close contact with their relatives, and access to private space. The children were gradually able to adapt to their new life; they perceived their illness through bodily changes and developed practical skills and understanding. The findings underscored the necessity for an emphasis on the mutual relationship between the body and its environment. Bodily changes that occur during illness may lead to changes in one's perception of the environment. Children seem to be particularly affected when the body appears alien and the hospital environment is unfamiliar. A well-adapted environment, active involvement, and the incorporation of new habits are significant elements of gradually returning to a more familiar life. However, the child's new life requires alertness to the body's signals and acclimation to a demanding diabetes treatment regime. All these factors remind children of their body

Feelings of children when witnessing parents' illness

Directory of Open Access Journals (Sweden)

Julia Wakiuchi

2016-12-01

Full Text Available This study aimed to learn the experiences of children who witness their parents' illness due to cancer. This is a descriptive, qualitative study, with six children between 10 and 12 years of age, children of cancer patients assisted by a support institution. The data were collected from July to August 2015, based on the guiding question:    "How do you feel about your father/mother's illness?" From the analysis, two categories emerged: Recognizing the disease and the possibility of the parents 'death and, Growing as a child and living as an adult: the repercussions of parents with cancer in their children's lives, which reveal that children understand cancer and the possibility of death of their parents, being also affected by the disease. By experiencing the fears and repercussions of cancer, children need assistance by the family and health team during their parents' illness.

Good-parent beliefs of parents of seriously ill children.

Science.gov (United States)

Feudtner, Chris; Walter, Jennifer K; Faerber, Jennifer A; Hill, Douglas L; Carroll, Karen W; Mollen, Cynthia J; Miller, Victoria A; Morrison, Wynne E; Munson, David; Kang, Tammy I; Hinds, Pamela S

2015-01-01

Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. To assess parents' perceptions regarding the relative importance of 12 good-parent attributes. A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness. Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.

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

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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.

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

Children's experiences of parental mental illness: a literature review.

Science.gov (United States)

Gladstone, Brenda M; Boydell, Katherine M; Seeman, Mary V; McKeever, Patricia D

2011-11-01

This paper provides a review of published qualitative research on children's experiences of parental mental illness. We undertook a comprehensive search of Medical Literature Analysis and Retrieval System Online, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Sociological Abstracts and Applied Social Sciences Index and Abstracts databases, as well as citation searches in Web of Science and manual searches of other relevant journals and reference lists of primary papers. Although 20 studies met the search criteria, only 10 focused exclusively on children's descriptions of their experience--the remainder elicited adults' perspectives on children's experiences of parental mental illnesses. Findings are organized under three themes: the impact of illness on children's daily life, how children cope with their experiences and how children understand mental illness. Despite references to pervasive knowledge gaps in the literature, significant information has been accumulated about children's experiences of parental mental illness. Considerable variability in research findings and tensions remain unresolved. For example, evidence is mixed as to children's knowledge and understanding of mental illnesses and how best to deploy resources to help them acquire optimal information. Furthermore, children's desire to be recognized as important to their parents' well-being conflicted with adults' perceptions that children should be protected from too much responsibility. Nevertheless, the cumulative evidence remains a key reason for advocating for psychoeducation and peer-support group interventions for children, which are endorsed by child and adult study participants alike. © 2011 Blackwell Publishing Asia Pty Ltd.

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.

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.

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

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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.

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

Chronic Pancreatitis in Children

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... E-News Sign-Up Home Patient Information Children/Pediatric Chronic Pancreatitis in Children Chronic Pancreatitis in Children What symptoms would my child have? Frequent or chronic abdominal pain is the most common symptom of pancreatitis. The ...

Awareness and Use of California's Paid Family Leave Insurance Among Parents of Chronically Ill Children

Science.gov (United States)

Schuster, Mark A.; Chung, Paul J.; Elliott, Marc N.; Garfield, Craig F.; Vestal, Katherine D.; Klein, David J.

2016-01-01

Context In 2004, California's Paid Family Leave Insurance Program (PFLI) became the first state program to provide paid leave to care for an ill family member. Objective To assess awareness and use of the program by employed parents of children with special health care needs, a population likely to need leave. Design, Setting, and Participants Telephone interviews with successive cohorts of employed parents before (November 21, 2003-January 31, 2004; n=754) and after (November 18, 2005-January 31, 2006; n=766) PFLI began, randomly sampled from 2 children's hospitals, one in California (with PFLI) and the other in Illinois (without PFLI). Response rates were 82% before and 81% after (California), and 80% before and 74% after (Illinois). Main Outcome Measures Taking leave, length of leave, unmet need for leave, and awareness and use of PFLI. Results Similar percentages of parents at the California site reported taking at least 1 day of leave to care for their ill child before (295 [81%]) and after (327 [79%]) PFLI, taking at least 4 weeks before (64 [21%]) and after (74 [19%]) PFLI, and at least once in the past year not missing work despite believing their child's illness necessitated it before (152 [41%]) and after (156 [41%]) PFLI. Relative to Illinois, parents at the California site reported no change from before to after PFLI in taking at least 1 day of leave (difference of differences, −3%; 95% confidence interval [CI], −13% to 7%); taking at least 4 weeks of leave (1%; 95% CI, −9% to 10%); or not missing work, despite believing their child's illness necessitated it (−1%; 95% CI, −13% to 10%). Only 77 parents (18%) had heard of PFLI approximately 18 months after the program began, and only 20 (5%) had used it. Even among parents without other access to paid leave, awareness and use of PFLI were minimal. Conclusions Parents of children with special health care needs receiving care at a California hospital were generally unaware of PFLI and rarely used

Awareness and use of California's Paid Family Leave Insurance among parents of chronically ill children.

Science.gov (United States)

Schuster, Mark A; Chung, Paul J; Elliott, Marc N; Garfield, Craig F; Vestal, Katherine D; Klein, David J

2008-09-03

In 2004, California's Paid Family Leave Insurance Program (PFLI) became the first state program to provide paid leave to care for an ill family member. To assess awareness and use of the program by employed parents of children with special health care needs, a population likely to need leave. Telephone interviews with successive cohorts of employed parents before (November 21, 2003-January 31, 2004; n = 754) and after (November 18, 2005-January 31, 2006; n = 766) PFLI began, randomly sampled from 2 children's hospitals, one in California (with PFLI) and the other in Illinois (without PFLI). Response rates were 82% before and 81% after (California), and 80% before and 74% after (Illinois). Taking leave, length of leave, unmet need for leave, and awareness and use of PFLI. Similar percentages of parents at the California site reported taking at least 1 day of leave to care for their ill child before (295 [81%]) and after (327 [79%]) PFLI, taking at least 4 weeks before (64 [21%]) and after (74 [19%]) PFLI, and at least once in the past year not missing work despite believing their child's illness necessitated it before (152 [41%]) and after (156 [41%]) PFLI. Relative to Illinois, parents at the California site reported no change from before to after PFLI in taking at least 1 day of leave (difference of differences, -3%; 95% confidence interval [CI], -13% to 7%); taking at least 4 weeks of leave (1%; 95% CI, -9% to 10%); or not missing work, despite believing their child's illness necessitated it (-1%; 95% CI, -13% to 10%). Only 77 parents (18%) had heard of PFLI approximately 18 months after the program began, and only 20 (5%) had used it. Even among parents without other access to paid leave, awareness and use of PFLI were minimal. Parents of children with special health care needs receiving care at a California hospital were generally unaware of PFLI and rarely used it. Among parents of children with special health care needs, taking leave in California did not

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.

Agreement between children and parents demonstrated that illness-related absenteeism was validly reported by children.

Science.gov (United States)

Denbæk, Anne Maj; Bonnesen, Camilla Thørring; Andersen, Anette; Holstein, Bjørn Evald; Laursen, Bjarne; Due, Pernille; Johansen, Anette

2016-01-01

To examine the agreement between children's and parents' reporting of illness-related absenteeism from school and to examine predictors for disagreement between children and parents. A total of 8,438 schoolchildren aged from 5 to 15 years (grade 0-8) and one parent of each child were invited to participate in the Hi Five baseline study. The response rate for children answering a questionnaire was 89% (n = 7,525), and 36% of the parents (n = 3,008) participated in a weekly illness registration study using text messages (short message service) over a period of 22 weeks. Text messages and questionnaire data were linked at the individual level, leaving 2,269 child-parent pairs in the analysis, corresponding to 27% of the eligible sample. The agreement between children's and parents' reports of illness-related absenteeism was good, with high absolute agreement and slight to moderate Ƙ values. Agreement was lowest for 6- to 8-year-olds and highest for 11- to 12-year-olds. Children's reports of illness symptoms and parents' reports of their children's illnesses in the preceding week were strong predictors for children reporting illness-related absenteeism when parents did not. Illness-related absenteeism can be reported by children, and children report higher prevalence of illness-related absenteeism than parents. Copyright © 2016 Elsevier Inc. All rights reserved.

Children's conceptions of mental illness: a naïve theory approach.

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Fox, Claudine; Buchanan-Barrow, Eithne; Barrett, Martyn

2010-09-01

This paper reports two studies that investigated children's conceptions of mental illness using a naïve theory approach, drawing upon a conceptual framework for analysing illness representations which distinguishes between the identity, causes, consequences, curability, and timeline of an illness. The studies utilized semi-structured interviewing and card selection tasks to assess 6- to 11-year-old children's conceptions of the causes and consequences (Study 1) and the curability and timeline (Study 2) of different mental and physical illnesses/ailments. The studies revealed that, at all ages, the children held coherent causal-explanatory ideas about the causes, consequences, curability, and timeline of both mental and physical illnesses/ailments. However, while younger children tended to rely on their knowledge of common physical illnesses when thinking about mental illnesses, providing contagion and contamination explanations of cause, older children demonstrated differences in their thinking about mental and physical illnesses. No substantial gender differences were found in the children's thinking. It is argued that children hold coherent conceptions of mental illness at all ages, but that mental illness only emerges as an ontologically distinct conceptual domain by the end of middle childhood.

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

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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

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

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.

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

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

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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

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

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

Agreement between children and parents demonstrated that illness-related absenteeism was validly reported by children

DEFF Research Database (Denmark)

Denbæk, Anne Maj; Bonnesen, Camilla Thørring; Andersen, Anette

2016-01-01

OBJECTIVES: To examine the agreement between children's and parents' reporting of illness-related absenteeism from school and to examine predictors for disagreement between children and parents. STUDY DESIGN AND SETTING: A total of 8,438 schoolchildren aged from 5 to 15 years (grade 0-8) and one...... of 22 weeks. Text messages and questionnaire data were linked at the individual level, leaving 2,269 child-parent pairs in the analysis, corresponding to 27% of the eligible sample. RESULTS: The agreement between children's and parents' reports of illness-related absenteeism was good, with high absolute...... agreement and slight to moderate Ƙ values. Agreement was lowest for 6- to 8-year-olds and highest for 11- to 12-year-olds. Children's reports of illness symptoms and parents' reports of their children's illnesses in the preceding week were strong predictors for children reporting illness-related absenteeism...

Coping and resilience of children of a mentally ill parent.

Science.gov (United States)

Pölkki, Pirjo; Ervast, Sari-Anne; Huupponen, Marika

2004-01-01

This paper examines the needs and stress reactions of children of mentally ill parents, as well as coping and resilience. The study is based on the interviews of six 9-11 years old children and narratives of seventeen female grown up children of mentally ill parents. The younger and older children of the mentally ill parents had not been informed about their parent's illness. The illness of the parent aroused a variety of emotions in them. The children used both practical problem solving and emotional coping mechanisms. Informal social support was available to them but seldom from the public services. It is recommended that professionals in mental health and child welfare services clarify their roles when working with mentally ill parents. The best interest of the child and the parenting they need should be carefully assessed. Open care measures should be offered to families early enough to prevent serious child welfare and mental problems.

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

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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.

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

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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.

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

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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.

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.

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)

Nutritional support for critically ill children.

Science.gov (United States)

Joffe, Ari; Anton, Natalie; Lequier, Laurance; Vandermeer, Ben; Tjosvold, Lisa; Larsen, Bodil; Hartling, Lisa

2016-05-27

Nutritional support in the critically ill child has not been well investigated and is a controversial topic within paediatric intensive care. There are no clear guidelines as to the best form or timing of nutrition in critically ill infants and children. This is an update of a review that was originally published in 2009. . The objective of this review was to assess the impact of enteral and parenteral nutrition given in the first week of illness on clinically important outcomes in critically ill children. There were two primary hypotheses:1. the mortality rate of critically ill children fed enterally or parenterally is different to that of children who are given no nutrition;2. the mortality rate of critically ill children fed enterally is different to that of children fed parenterally.We planned to conduct subgroup analyses, pending available data, to examine whether the treatment effect was altered by:a. age (infants less than one year versus children greater than or equal to one year old);b. type of patient (medical, where purpose of admission to intensive care unit (ICU) is for medical illness (without surgical intervention immediately prior to admission), versus surgical, where purpose of admission to ICU is for postoperative care or care after trauma).We also proposed the following secondary hypotheses (a priori), pending other clinical trials becoming available, to examine nutrition more distinctly:3. the mortality rate is different in children who are given enteral nutrition alone versus enteral and parenteral combined;4. the mortality rate is different in children who are given both enteral feeds and parenteral nutrition versus no nutrition. In this updated review we searched: the Cochrane Central Register of Controlled Trials (CENTRAL 2016, Issue 2); Ovid MEDLINE (1966 to February 2016); Ovid EMBASE (1988 to February 2016); OVID Evidence-Based Medicine Reviews; ISI Web of Science - Science Citation Index Expanded (1965 to February 2016); Web

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.

Talking to children about parental mental illness: The experiences of well parents.

Science.gov (United States)

Ballal, Divya; Navaneetham, Janardhana

2018-06-01

Children of parents with mental illness are not routinely included in psychoeducational and supportive family interventions provided by adult mental health systems. The family, therefore, is an important and, sometimes, the only source of information and support for them. To understand the experiences of well parents in talking to their children about parental mental illness. This article presents the findings of a qualitative study of the experiences of well parents in talking to their children about parental mental illness. Ten well parents whose spouses were diagnosed with a severe mental illness participated in the study. Socio-demographic information, family details and history of the spouse's mental illness along with their experiences of talking to children about parental mental illness, the perceived risks and benefits, challenges they faced and the role of others in the process were recorded. Qualitative data were analysed using interpretative phenomenological analysis. The themes of 'distancing children from parental mental illness', 'avoiding conversations about the illness', 'giving and receiving emotional support', 'providing explanations of the illness' and 'regulating other sources of information' show the complex ways in which well parents influence their children's understanding of parental mental illness. The findings are examined in the background of what is known about this topic from the perspective of children or of the parent with illness. Possible ways to support well parents in families affected by parental mental illness are discussed. This study is a step forward in the understanding of how families talk to children about parental mental illness and provides the perspective of the well parent.

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

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.

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

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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.

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

Understanding Parental Grief as a Response to Mental Illness: Implications for Practice

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Penzo, Jeanine A.; Harvey, Pat

2008-01-01

Parents who are raising children with mental illness struggle with feelings of grief and loss. Kubler-Ross' (1969) stages of grieving (denial, anger, bargaining, depression, and acceptance) are examined as experienced by parents raising children with chronic mental illness. Practice implications for social workers who are working with children and…

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.

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

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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.

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

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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.

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

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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.

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...

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.

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

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...

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

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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.

Treatment of Children with Mental Illness: Frequently Asked Questions about the Treatment of Mental Illness in Children

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National Institute of Mental Health (NIMH), 2009

2009-01-01

Research shows that half of all lifetime cases of mental illness begin by age 14. Scientists are discovering that changes in the body leading to mental illness may start much earlier, before any symptoms appear. Through greater understanding of when and how fast specific areas of children's brains develop, we are learning more about the early…

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

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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.

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…

Household illness, poverty and physical and emotional child abuse victimisation: findings from South Africa's first prospective cohort study.

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Meinck, Franziska; Cluver, Lucie D; Boyes, Mark E

2015-05-01

Physical and emotional abuse of children is a large scale problem in South Africa, with severe negative outcomes for survivors. Although chronic household illness has shown to be a predictor for physical and emotional abuse, no research has thus far investigated the different pathways from household chronic illness to child abuse victimisation in South Africa. Confidential self-report questionnaires using internationally utilised measures were completed by children aged 10-17 (n = 3515, 56.7% female) using door-to-door sampling in randomly selected areas in rural and urban locations of South Africa. Follow-up surveys were conducted a year later (96.7% retention rate). Using multiple mediation analyses, this study investigated direct and indirect effects of chronic household illness (AIDS or other illness) on frequent (monthly) physical and emotional abuse victimisation with poverty and extent of the ill person's disability as hypothesised mediators. For children in AIDS-ill families, a positive direct effect on physical abuse was obtained. In addition, positive indirect effects through poverty and disability were established. For boys, a positive direct and indirect effect of AIDS-illness on emotional abuse through poverty were detected. For girls, a positive indirect effect through poverty was observed. For children in households with other chronic illness, a negative indirect effect on physical abuse was obtained. In addition, a negative indirect effect through poverty and positive indirect effect through disability was established. For boys, positive and negative indirect effects through poverty and disability were found respectively. For girls, a negative indirect effect through poverty was observed. These results indicate that children in families affected by AIDS-illness are at higher risk of child abuse victimisation, and this risk is mediated by higher levels of poverty and disability. Children affected by other chronic illness are at lower risk for

Life skills programmes for chronic mental illnesses

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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

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

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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.

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 ...

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.

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

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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

[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.

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

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.

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 ...

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...

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

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...

Children's Conceptions of Mental Illness: A Naive Theory Approach

Science.gov (United States)

Fox, Claudine; Buchanan-Barrow, Eithne; Barrett, Martyn

2010-01-01

This paper reports two studies that investigated children's conceptions of mental illness using a naive theory approach, drawing upon a conceptual framework for analysing illness representations which distinguishes between the identity, causes, consequences, curability, and timeline of an illness. The studies utilized semi-structured interviewing…

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.

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…

Use of virtual reality gaming systems for children who are critically ill.

Science.gov (United States)

Salem, Yasser; Elokda, Ahmed

2014-01-01

Children who are critically ill are frequently viewed as "too sick" to tolerate physical activity. As a result, these children often fail to develop strength or cardiovascular endurance as compared to typically developing children. Previous reports have shown that early participation in physical activity in is safe and feasible for patients who are critically ill and may result in a shorter length of stay and improved functional outcomes. The use of the virtual reality gaming systems has become a popular form of therapy for children with disabilities and has been supported by a growing body of evidence substantiating its effectiveness with this population. The use of the virtual reality gaming systems in pediatric rehabilitation provides the children with opportunity to participate in an exercise program that is fun, enjoyable, playful, and at the same time beneficial. The integration of those systems in rehabilitation of children who are critically ill is appealing and has the potential to offer the possibility of enhancing physical activities. The lack of training studies involving children who are critically ill makes it difficult to set guidelines on the recommended physical activities and virtual reality gaming systems that is needed to confer health benefits. Several considerations should be taken into account before recommended virtual reality gaming systems as a training program for children who are critically ill. This article highlighted guidelines, limitations and challenges that need to be considered when designing exercise program using virtual reality gaming systems for critically ill children. This information is helpful given the popular use of virtual reality gaming systems in rehabilitation, particularly in children who are critically ill.

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.

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

A Case Definition for Children with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

OpenAIRE

Leonard A. Jason; Nicole Porter; Elizabeth Shelleby; David S. Bell; Charles W. Lapp; Kathy Rowe; Kenny De Meirleir

2008-01-01

The case definition for chronic fatigue syndrome was developed for adults (Fukuda et al. 1994), and this case definition may not be appropriate for use with children and adolescents. The lack of application of a consistent pediatric definition for this illness and the lack of a reliable instrument to assess it might lead to studies which lack sensitivity and specificity. In this article, a case definition is presented that has been endorsed by the International Association of ME/CFS.

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.

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.

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.

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

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.

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

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

[How do mentally ill parents evaluate their children's quality of life? Associations with the parent's illness and family functioning].

Science.gov (United States)

Pollak, Eva; Bullinger, Monika; Jeske, Jana; Wiegand-Grefe, Silke

2008-01-01

To assess health-related quality of life (hrQoL) of children with a mentally ill parent, and its associations with the parent's illness (diagnoses, severity of disease, current symptoms) and family functioning, 51 mentally ill parents rated their children's hrQoL using the KINDL-R, a multidimensional hrQoL questionnaire for children. Parents rated their current psychiatric symptoms on the SCL-14 (Symptom Checklist-14) and family functioning on the FB-A ("Familienbögen"). The parents' therapists (psychologists or psychiatrists) provided psychiatric diagnoses as well as global ratings of disease severity (CGI) and patient's family functioning. Compared to the general population, parents rated their children's hrQoL significantly lower concerning the dimensions "Psychological Well-Being" and "Family': HrQoL ratings were moderately correlated with the parent's current depressive symptoms and moderately to highly correlated with family functioning from the parent's perspective. Lower depression severity and higher family functioning were associated with higher hrQoL ratings. Parents with affective disorders rated their children's hrQoL significantly lower than did parents with a diagnosis of substance abuse. Results show the importance of family functioning for parents' view of children's hrQoL and the influence of psychiatric symptoms on ill parents' reports. These findings are in line with previous results concerning potential psychological and behavioural problems in children of mentally ill parents. Family interventions and multi-informant assessment should be used in this high-risk group.

[Prevention groups for school-age children of mentally ill parents ("Auryn Groups")].

Science.gov (United States)

Dierks, H

2001-09-01

Children of psychiatrically ill parents have a high risk themselves to develop a psychiatric illness in adulthood. Prevention aims at strengthening the resilience of these children and reducing psychosocial risk factors. This article found and describes a theoretical concept of prevention groups for children in schoolage (7-16 years) whose parents are psychiatrically ill. First practical experiences are depicted. The Hamburgian model of prevention works with closed and temporary limited groups of children as well as with the parents. It is based on supporting the children's existing coping strategies and the children are encouraged to exchange their individual experiences of the relationships within their families. One conclusion was, that the main thematic emphasis varied considerably depending on the age of the children.

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

Wrongdoing and Retribution: Children's Conceptions of Illness Causality in a Central Indian Village.

Science.gov (United States)

Froerer, Peggy

2007-12-01

This paper is a study of children's conceptions of illness causality. Based on ethnographic research in a central Indian tribal community, it is a response to the lack of systematic attention within mainstream anthropology on children, and within medical anthropology on children's understanding of illness causation. A combination of participant observation and structured interviews was used to examine local distinctions between 'natural' and 'supernatural' illness, which are underpinned by ideas about supernatural retribution. The focus in this paper is on how children learn and reason about such ideas, and on the processes by which they assume culpability for 'supernatural' illnesses. By arguing that children do not simply replicate adult conceptions about illness causality but instead apply their own experience to their understanding and representation of such ideas, this paper challenges taken-for-granted assumptions about the acquisition and reproduction of cultural knowledge.

Understanding Children with Asthma: Trouble and Triggers

Science.gov (United States)

Lim, JungHa; Wood, Beatrice L.; Cheah, PoAnn

2009-01-01

Asthma is one of the most common illnesses of childhood; in the United States, nearly 9% of children have the condition (Federal Interagency Forum on Child and Family Statistics, 2006). Among children with chronic illnesses, asthma is the most common cause for school absence and hospitalization (Akinbami, 2006). Asthma is a chronic disorder of the…

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.

Inter-hospital transport of critically ill children.

LENUS (Irish Health Repository)

Aherne, E

2009-10-01

Most Irish paediatric tertiary care services are centralised in Dublin. Many children are transferred there each year from regional paediatric units around the country. We aimed to quantify and describe all children transferred from one regional tertiary hospital over a two year period. Seventy three out of 75 identified transfers were examined. Sixty nine transfers (94.5%) were sent to the major tertiary centre. Fifteen (20.5%) required intensive care services for transfer. Seventeen seriously ill neonates required transfer, however only 4 (23.5%) of those met both the criteria for and the availability of the National Neonatal Transfer Team (NNTT). Significant events during transfer were only documented in 3 cases. Most transfers arrived in Dublin outside normal working hours. Standards of documentation were found to be very inconsistent. In conclusion, a national transport service for all critically ill children is urgently needed in Ireland.

Timing of the initiation of parenteral nutrition in critically ill children.

Science.gov (United States)

Jimenez, Lissette; Mehta, Nilesh M; Duggan, Christopher P

2017-05-01

To review the current literature evaluating clinical outcomes of early and delayed parenteral nutrition initiation among critically ill children. Nutritional management remains an important aspect of care among the critically ill, with enteral nutrition generally preferred. However, inability to advance enteral feeds to caloric goals and contraindications to enteral nutrition often leads to reliance on parenteral nutrition. The timing of parenteral nutrition initiation is varied among critically ill children, and derives from an assessment of nutritional status, energy requirements, and physiologic differences between adults and children, including higher nutrient needs and lower body reserves. A recent randomized control study among critically ill children suggests improved clinical outcomes with avoiding initiation of parenteral nutrition on day 1 of admission to the pediatric ICU. Although there is no consensus on the optimal timing of parenteral nutrition initiation among critically ill children, recent literature does not support the immediate initiation of parenteral nutrition on pediatric ICU admission. A common theme in the reviewed literature highlights the importance of accurate assessment of nutritional status and energy expenditure in deciding when to initiate parenteral nutrition. As with all medical interventions, the initiation of parenteral nutrition should be considered in light of the known benefits of judiciously provided nutritional support with the known risks of artificial, parenteral feeding.

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.

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...

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

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.

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.

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

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

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.

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.

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.

Maternal Mental Illness and the Safety and Stability of Maltreated Children

Science.gov (United States)

Kohl, Patricia L.; Jonson-Reid, Melissa; Drake, Brett

2011-01-01

Objective: Children of mothers with mental illness are at risk for multiple untoward outcomes, including child maltreatment and foster care placement. The purpose of this analysis was to determine the association between maternal mental illness and children's long term safety and stability. Methods: A multi-sector administrative dataset from the…

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.

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.

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

Chronic Disease and Childhood Development: Kidney Disease and Transplantation.

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Klein, Susan D.; Simmons, Roberta G.

As part of a larger study of transplantation and chronic disease and the family, 124 children (10-18 years old) who were chronically ill with kidney disease (n=72) or were a year or more post-transplant (n=52) were included in a study focusing on the effects of chronic kidney disease and transplantation on children's psychosocial development. Ss…

[Rome III classification of functional gastrointestinal disorders in children with chronic abdominal pain].

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Plocek, Anna; Wasowska-Królikowska, Krystyna; Toporowska-Kowalska, Ewa

2010-01-01

The updated Rome III Classification of paediatric functional gastrointestinal disorders (FGIDs) associated with abdominal pain comprises: functional dyspepsia (FD), irritable bowel syndrome (IBS), abdominal migraine, functional abdominal pain (FAP), functional abdominal pain syndrome (FAPS). To assess the value of the Rome criteria in identifying FGIDs in children with chronic abdominal pain. The study group consisted of 439 consecutive paediatric patients (192 boys and 247 girls) aged 4-18 years (mean age was 11.95 +/- 3.89 years) referred to the Paediatric Gastroenterology Department at Medical University of Lodz from January 2008 to June 2009 for evaluation of abdominal pain of at least 2 months' duration. After exclusion of organic disease children suspected of functional chronic abdominal pain were categorized with the use of Rome III criteria of FGIDs associated with abdominal pain (H2a-H2d1) and the Questionnaire on Paediatric Gastrointestinal Symptoms (with the permission of doctor L. S. Walker). The patients with known nonabdominal organic disease, chronic illness or handicap were excluded. In 161 patients (36.58%) organic etiology was confirmed. Of the 278 children (63.42%) with functional chronic abdominal pain, 228 (82.02%) met the Rome III criteria for FGIDs associated with abdominal pain (FD, 15.5%; IBS, 21.6%; abdominal migraine, 5%; FAP 24.5%; FAPS, 15.9%). Fifty cases (17.98%) did not fulfill the criteria for subtypes of abdominal pain-related FGIDs--mainly due to different as defined by Rome III criteria (at least once per week) frequency of symptom presentation. (1) In the authors'investigations FGIDs was the most frequent cause of chronic abdominal pain in children. (2) The significant number of children with nonclassified FGIDs implies the need to modify the diagnostic criteria of Rome III classification concerning the prevalence of symptoms.

THE RESULTS OF STUDY OF THE LEVELS OF SPECIFIC ANTIBODIES TO THE COMBINED INJECTION VACCINES AGAINST INFLUENZA, MEASLES, RUBELLA AND MUMPS AND DT IN CHILDREN WITH CHRONIC PHYSICAL ILLNESS

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S. M. Haritе

2014-01-01

Full Text Available The levels of antibodies to the separate and combined administration of the vaccine plus Grippol® Plus and vaccines against measles, mumps and/or rubella, diphtheria and tetanus (DT in children with chronic medical illnesses, including HIV and organic CNS. Revealed that at low reactogenicity and safety of the vaccine Grippol® Plus, concomitant vaccination does not affect the dynamics of the synthesis (seroprotection, seroconversion, diphtheria, mumps, and rubella antibodies, however, reduces the synthesis of measles antibodies. When combined administration of DT and mumps-measles vaccines + Grippol® Plus suppressed antibody response to a strain of influenza virus A/H3N2. 

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

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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.

A randomized controlled trial of daily sedation interruption in critically ill children

NARCIS (Netherlands)

Vet, Nienke J.; de Wildt, Saskia N.; Verlaat, Carin W. M.; Knibbe, Catherijne A. J.; Mooij, Miriam G.; van Woensel, Job B. M.; van Rosmalen, Joost; Tibboel, Dick; de Hoog, Matthijs

2016-01-01

To compare daily sedation interruption plus protocolized sedation (DSI + PS) to protocolized sedation only (PS) in critically ill children. In this multicenter randomized controlled trial in three pediatric intensive care units in the Netherlands, mechanically ventilated critically ill children with

A qualitative study examining health literacy and chronic illness self-management in Hispanic and non-Hispanic older adults

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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

ETIOLOGICAL FACTORS OF CHRONIC GASTRITIS IN CHILDREN

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G.V. Volynets

2006-01-01

Full Text Available In the article the data on the study of the etiological factors of various types of chronic gastritis in children are presented. Based on revealing of the auto antibodies to parietal gastric cells in 40,0% of children autoimmune gastritis (a type gastritis is diagnosed. Helicobacterr pylori infection is revealed in 44,8% of children. In 27,6% of children type c gastritis is diagnosed. Autoimmune gastritis in children has been linked to the active phase of chronic epsteinbbarr virus infection. the etiological factors of nonautoimmune gastritis are Helicobacter pylori infection (type b gastritis and multiple duodenogastric refluxes (type c gastritis.Key words: children, chronic gastritis, etiological factors, autoimmune gastritis, nonautoimmune gastritis, active phase of chronic Epstein-Barr virus infection, Helicobacter pylori infection.

Cross-cultural differences in children's concepts of health and illness

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Boruchovitch Evely

1997-01-01

Full Text Available INTRODUCTION: In spite of general agreement that cross-cultural research is needed in the health area, most existing investigations of children's development of health and illness-related concepts have involved samples from developed countries. The study examined the development of the concepts of health and illness as a function of subject's age, socio-economic status (SES, gender and grade level in a Brazilian sample of 96 elementary and junior high school students. METHODS: Subjects were interviewed individually and their ideas of health and illness were assessed through open-ended questions. Participants' answers were transcribed verbatim and subjected to content analysis. RESULTS: Chi-square analyses revealed significant age, school grade and SES-related differences in participants' concepts of health and illness. DISCUSSION AND CONCLUSION: The themes employed by subjects to define both health and illness were broadly consistent with those found by previous research. The study showed a predictable relationship between subject's age and school grade level and increasingly more highly differentiated and multidimensional concepts of health and illness. This investigation suggests that, for the most part, cross-cultural similarities in children's concepts of health and illness may be more striking than the differences.

Cross-cultural differences in children's concepts of health and illness

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Evely Boruchovitch

1997-10-01

Full Text Available INTRODUCTION: In spite of general agreement that cross-cultural research is needed in the health area, most existing investigations of children's development of health and illness-related concepts have involved samples from developed countries. The study examined the development of the concepts of health and illness as a function of subject's age, socio-economic status (SES, gender and grade level in a Brazilian sample of 96 elementary and junior high school students. METHODS: Subjects were interviewed individually and their ideas of health and illness were assessed through open-ended questions. Participants' answers were transcribed verbatim and subjected to content analysis. RESULTS: Chi-square analyses revealed significant age, school grade and SES-related differences in participants' concepts of health and illness. DISCUSSION AND CONCLUSION: The themes employed by subjects to define both health and illness were broadly consistent with those found by previous research. The study showed a predictable relationship between subject's age and school grade level and increasingly more highly differentiated and multidimensional concepts of health and illness. This investigation suggests that, for the most part, cross-cultural similarities in children's concepts of health and illness may be more striking than the differences.

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

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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.

The SMILES program: a group program for children with mentally ill parents or siblings.

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Pitman, Erica; Matthey, Stephen

2004-07-01

The Simplifying Mental Illness + Life Enhancement Skills program, for children with a mentally ill parent or sibling, is a 3-day program that aims to increase children's knowledge of mental illness and to better equip them with life skills considered beneficial for coping in their family. Self-report data from 25 children who attended 3 of these programs, in Canada and Australia, indicate that these aims were achieved. Their parents also report benefits for their children.

Children's Moral Reasoning about Illness in Chhattisgarh, Central India

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Froerer, Peggy

2011-01-01

This article is about children's moral reasoning about illness and supernatural retribution in a rural tribal community in Chhattisgarh, central India. Detailed ethnographic analysis is devoted to the norms and experiences within which conceptions about illness causality and morality are formed. The author is principally interested in the…

Children in Beardslee's family intervention: relieved by understanding of parental mental illness.

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Pihkala, Heljä; Sandlund, Mikael; Cederström, Anita

2012-11-01

Beardslee's family intervention (FI), which is a family-based preventive method for children of mentally ill parents, has been implemented on a national level in Sweden. Fourteen children and parents from nine families were interviewed about how the FI was for the children. Data were analysed by qualitative content analysis. A central finding was children's sense of relief and release from worry because of more knowledge and openness about the parent's illness in the family. The results indicating relief for the children are encouraging.

Chronic Illnesses and Depressive Symptoms Among Older People: Functional Limitations as a Mediator and Self-Perceptions of Aging as a Moderator.

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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.

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

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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…

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

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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.

The characteristics of family functioning with mentally ill children and adolescents

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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.

Childhood trauma and chronic illness in adulthood: mental health and socioeconomic status as explanatory factors and buffers.

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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.

Childhood trauma and chronic illness in adulthood: mental health and socioeconomic status as explanatory factors and buffers

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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.

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.

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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.

Utility of CT-compatible EEG electrodes in critically ill children

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Abend, Nicholas S. [Perelman School of Medicine at the University of Pennsylvania, Departments of Neurology and Pediatrics, The Children' s Hospital of Philadelphia, Philadelphia, PA (United States); CHOP Neurology, Philadelphia, PA (United States); Dlugos, Dennis J. [Perelman School of Medicine at the University of Pennsylvania, Departments of Neurology and Pediatrics, The Children' s Hospital of Philadelphia, Philadelphia, PA (United States); Zhu, Xiaowei; Schwartz, Erin S. [Perelman School of Medicine at the University of Pennsylvania, Department of Radiology, The Children' s Hospital of Philadelphia, Philadelphia, PA (United States)

2015-05-01

Electroencephalographic monitoring is being used with increasing frequency in critically ill children who may require frequent and sometimes urgent brain CT scans. Standard metallic disk EEG electrodes commonly produce substantial imaging artifact, and they must be removed and later reapplied when CT scans are indicated. To determine whether conductive plastic electrodes caused artifact that limited CT interpretation. We describe a retrospective cohort of 13 consecutive critically ill children who underwent 17 CT scans with conductive plastic electrodes during 1 year. CT images were evaluated by a pediatric neuroradiologist for artifact presence, type and severity. All CT scans had excellent quality images without artifact that impaired CT interpretation except for one scan in which improper wire placement resulted in artifact. Conductive plastic electrodes do not cause artifact limiting CT scan interpretation and may be used in critically ill children to permit concurrent electroencephalographic monitoring and CT imaging. (orig.)

Utility of CT-compatible EEG electrodes in critically ill children

International Nuclear Information System (INIS)

Abend, Nicholas S.; Dlugos, Dennis J.; Zhu, Xiaowei; Schwartz, Erin S.

2015-01-01

Electroencephalographic monitoring is being used with increasing frequency in critically ill children who may require frequent and sometimes urgent brain CT scans. Standard metallic disk EEG electrodes commonly produce substantial imaging artifact, and they must be removed and later reapplied when CT scans are indicated. To determine whether conductive plastic electrodes caused artifact that limited CT interpretation. We describe a retrospective cohort of 13 consecutive critically ill children who underwent 17 CT scans with conductive plastic electrodes during 1 year. CT images were evaluated by a pediatric neuroradiologist for artifact presence, type and severity. All CT scans had excellent quality images without artifact that impaired CT interpretation except for one scan in which improper wire placement resulted in artifact. Conductive plastic electrodes do not cause artifact limiting CT scan interpretation and may be used in critically ill children to permit concurrent electroencephalographic monitoring and CT imaging. (orig.)

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

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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.

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).

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).

Can a management pathway for chronic cough in children improve clinical outcomes: protocol for a multicentre evaluation

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Masters IB

2010-11-01

Full Text Available Abstract Background Chronic cough is common and is associated with significant economic and human costs. While cough can be a problematic symptom without serious consequences, it could also reflect a serious underlying illness. Evidence shows that the management of chronic cough in children needs to be improved. Our study tests the hypothesis that the management of chronic cough in children with an evidence-based management pathway is feasible and reliable, and improves clinical outcomes. Methods/Design We are conducting a multicentre randomised controlled trial based in respiratory clinics in 5 major Australian cities. Children (n = 250 fulfilling inclusion criteria (new patients with chronic cough are randomised (allocation concealed to the standardised clinical management pathway (specialist starts clinical pathway within 2 weeks or usual care (existing care until review by specialist at 6 weeks. Cough diary, cough-specific quality of life (QOL and generic QOL are collected at baseline and at 6, 10, 14, 26, and 52 weeks. Children are followed-up for 6 months after diagnosis and cough resolution (with at least monthly contact from study nurses. A random sample from each site will be independently examined to determine adherence to the pathway. Primary outcomes are group differences in QOL and proportion of children that are cough free at week 6. Discussion The clinical management pathway is based on data from Cochrane Reviews combined with collective clinical experience (250 doctor years. This study will provide additional evidence on the optimal management of chronic cough in children. Trial registration ACTRN12607000526471

Chronic acetaminophen overdosing in children: risk assessment and management.

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Sztajnkrycer, M J; Bond, G R

2001-04-01

Acetaminophen is currently the pediatric analgesic and antipyretic of choice. Although children appear to tolerate single, high-dose ingestions well, the literature is replete with reports of significant morbidity and mortality after repeated supra-therapeutic dosing. Proposed risk factors for injury with chronic use include age, total dose, duration, presence of intercurrent febrile illness, starvation, co-administration of cytochrome P450-inducing drugs, underlying hepatic disease, and unique genetic makeup. Evaluation of these children should include serum acetaminophen concentration, prothrombin time, and serum bilirubin and transaminase concentrations. The Rumack-Mathew nomogram should not be used to estimate the risk of hepatotoxicity in cases of chronic ingestion. Based on history, clinical examination, and laboratory findings, patients may be placed in three categories: those without hepatic injury and with no residual acetaminophen to be metabolized, those without injury but with some acetaminophen to be metabolized, and those with hepatotoxicity. Those without injury and no residual acetaminophen need not be treated or followed. Patients with hepatotoxicity or potential for hepatotoxicity based on residual acetaminophen should be treated with N-acetylcysteine. Most importantly, because so many parents are unaware of the potential risk of inappropriate dosing, education is the key to preventing future cases.

[Illness concepts of children. Validation of a modified locus of control test in illness and health].

Science.gov (United States)

Schmidt, A; Altmann-Herz, U

1992-12-01

We investigated the health and illness concepts of 53 healthy children aged 8 to 14 years using a modified illness and health locus of control scale (KKG, Lohaus and Schmitt, 1989) with the scales internal, external-p (powerful others) and external-c (chance). A comparison of the results with those on self-esteem (FSK 4-6), anxiety (CMAS-R) and hopelessness (HSC) scales showed a decrease in externality, but not an increase in internality, with increasing age and a correlation between self-confidence and a more internal locus of control. The influence of children's health locus of control on treatment compliance is discussed.

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...

Decreased lung function after preschool wheezing rhinovirus illnesses in children at risk to develop asthma.

Science.gov (United States)

Guilbert, Theresa W; Singh, Anne Marie; Danov, Zoran; Evans, Michael D; Jackson, Daniel J; Burton, Ryan; Roberg, Kathy A; Anderson, Elizabeth L; Pappas, Tressa E; Gangnon, Ronald; Gern, James E; Lemanske, Robert F

2011-09-01

Preschool rhinovirus (RV) wheezing illnesses predict an increased risk of childhood asthma; however, it is not clear how specific viral illnesses in early life relate to lung function later on in childhood. To determine the relationship of virus-specific wheezing illnesses and lung function in a longitudinal cohort of children at risk for asthma. Two hundred thirty-eight children were followed prospectively from birth to 8 years of age. Early life viral wheezing respiratory illnesses were assessed by using standard techniques, and lung function was assessed annually by using spirometry and impulse oscillometry. The relationships of these virus-specific wheezing illnesses and lung function were assessed by using mixed-effect linear regression. Children with RV wheezing illness demonstrated significantly decreased spirometry values, FEV(1) (P = .001), FEV(0.5) (P Children who wheezed with respiratory syncytial virus or other viral illnesses did not have any significant differences in spirometric or impulse oscillometry indices when compared with children who did not. Children diagnosed with asthma at ages 6 or 8 years had significantly decreased FEF(25-75) (P = .05) compared with children without asthma. Among outpatient viral wheezing illnesses in early childhood, those caused by RV infections are the most significant predictors of decreased lung function up to age 8 years in a high-risk birth cohort. Whether low lung function is a cause and/or effect of RV wheezing illnesses is yet to be determined. Copyright © 2011 American Academy of Allergy, Asthma & Immunology. Published by Mosby, Inc. All rights reserved.

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.

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

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.

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.

THE PREVALENCE OF INFECTION WITH HERPES VIRUSES AMONG FREQUENTLY ILL CHILDREN

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Volyansky AY

2014-10-01

Full Text Available Frequently ill children (FIC - a group of dispensary an inclusion criterion which is the frequency of episodes of colds are over 4-6 throughout the year depending on age. In children population among all diseases marked the absolute predominance (90% of acute respiratory infections (ARI. The maximum incidence of acute respiratory infections among children there is between the ages of 1 to 3 years, and then gradually decreases. Among primary school children the incidence is 2-5 cases a year, among teens - no more than 2-4 diseases throughout the year. Opinions of scholars and practitioners pediatricians as to the legality of frequent classification of cases of children to pathologic conditions of the immune system are different and often diametrically opposed. Objective: To determine the prevalence of infection with herpes viruses of frequently ill children. Materials and methods. The analysis consists the results of clinical and laboratory examination of 170 frequently ill children. The criterion for selection of children for the study is the frequency of episodes of colds according to the classification of A.A.Baranov V.Yu.Albitskiy. Analysis of clinical and anamnesis data revealed that in the observed group of children there is a high rate of recurrent respiratory diseases. Thus, in the observed group of children the average incidence of ARI was 7,42 ± 0,92 episodes a year. The average duration of an episode of disease was 9,12 ± 2,75 days. The complicated course occurred in 32% of cases, the average duration of a complicated episode grew to 12,37 ± 3,91 days. This study led to the following conclusions: 1. To 3 years of age, about 85% frequently ill children are infected with at least one virus of the family Herpesviridae. By 6 years of age the number grows to 95%, to 11 years - to 98%. 2. Infectiousness 3 or more herpes viruses among children up to 3 years is more than 30%, among children 3-6 years is 48%, in the age group 6-11 years more

The heterogeneity in financial and time burden of caregiving to children with chronic conditions.

Science.gov (United States)

Zan, Hua; Scharff, Robert L

2015-03-01

We examine the financial and time burdens associated with caring for children with chronic conditions, focusing on disparities across types of conditions. Using linked data from the 2003 to 2006 National Health Interview Survey and 2004-2008 Medical Expenditure Panel Survey, we created measures of financial burden (out-of-pocket healthcare costs, the ratio of out-of-pocket healthcare costs to family income, healthcare costs paid by insurance, and total healthcare costs) and time burden (missed school time due to illness or injury and the number of doctor visits) associated with 14 groups of children's chronic conditions. We used the two-part model to assess the effect of condition on financial burden and finite mixture/latent class model to analyze the time burden of caregiving. Controlling for the influences of other socio-demographic characteristics on caregiving burden, children with chronic conditions have higher financial and time burdens relative to caregiving burdens for healthy children. Levels of financial burden and burden sharing between families and insurance system also vary by type of condition. For example, children with pervasive developmental disorder or heart disease have a relatively low financial burden for families, while imposing a high cost on the insurance system. In contrast, vision difficulties are associated with a high financial burden for families relative to the costs borne by others. With respect to time burden, conditions such as cerebral palsy and heart disease impose a low time burden, while conditions such as pervasive developmental disorder are associated with a high time burden. This study demonstrates that differences exist in caregiving burden for children by type of chronic condition. Each condition has a unique profile of time and financial cost burden for families and the insurance system. These results have implications for policymakers and for families' savings and employment decisions.

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...

Shared Decision-Making with Parents of Acutely Ill Children: A Narrative Review.

Science.gov (United States)

Aronson, Paul L; Shapiro, Eugene D; Niccolai, Linda M; Fraenkel, Liana

Shared decision-making (SDM) has mostly been used with adults and parents in the primary care setting, and there is limited knowledge on the use of SDM with parents of acutely ill children. The objective of this study was to review the literature on SDM with parents in the management of acutely ill children. We searched MEDLINE, SCOPUS, PsycINFO, the Cochrane Library, and ClinicalTrials.gov for English language studies published from the time of database inception to February, 2017. Study eligibility criterion was use of SDM with parents for children aged 18 years or younger with an acute medical problem. We identified 2 ongoing clinical trials and 10 published studies that met inclusion criteria: 2 using hypothetical SDM scenarios, 1 mixed methods study, and 7 intervention studies. Only 1 study compared an SDM intervention with usual care in a randomized controlled trial. The limited literature shows that parents of acutely ill children have differing preferences for testing and/or treatment, and that they generally want the opportunity to express those preferences through an SDM process. Use of SDM often results in acutely ill children undergoing fewer and/or less intensive testing or treatment, although the effect on outcomes is unclear. Parents welcome participation in SDM for management decisions with their acutely ill child. Further investigation is needed to determine how best to implement SDM with parents of acutely ill children and to assess the effect of SDM on outcomes. Copyright © 2017 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

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...

Interviews with children of persons with a severe mental illness: investigating their everyday situation.

Science.gov (United States)

Ostman, Margareta

2008-01-01

Research on children of persons with a severe mental illness focuses predominantly on parents' and others' perceptions. Children of mentally ill parents form a vulnerable group that has not been adequately paid attention to in psychiatric care institutions. Comparatively little is known about the children's recognition of their parents and the everyday situation of these families. The aim of the study was to investigate experiences of their life situation in children 10-18 years of age in a family with a parent with a severe mental illness. Eight children were interviewed concerning their everyday life situation. The interviews were analysed inspired from using thematic analysis. From the analysis of the material emerged aspects concerning the following themes: need for conversation, love for their family, maturity, experience of fear and blame, feelings of loneliness, responsibility and associated stigma. This study highlights the situation experienced by children of severely mentally ill persons who also are parents. The study may be found to be a basis for inspiring structured interventions and treatments programmes including children of the adult patients seeking psychiatric treatment.

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…

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

Prediction of chronic critical illness in a general intensive care unit

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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.

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

Caring for children with life-limiting and life-threatening illnesses ...

African Journals Online (AJOL)

2011-07-03

Jul 3, 2011 ... She currently works with funding support from the Red Cross War Memorial Children's Hospital and the ... Children with life-limiting illnesses may also develop life-threatening ... bodies in an age-appropriate manner a basic.

Critically ill children during the 2009-2010 influenza pandemic in the United States.

Science.gov (United States)

Randolph, Adrienne G; Vaughn, Frances; Sullivan, Ryan; Rubinson, Lewis; Thompson, B Taylor; Yoon, Grace; Smoot, Elizabeth; Rice, Todd W; Loftis, Laura L; Helfaer, Mark; Doctor, Allan; Paden, Matthew; Flori, Heidi; Babbitt, Christopher; Graciano, Ana Lia; Gedeit, Rainer; Sanders, Ronald C; Giuliano, John S; Zimmerman, Jerry; Uyeki, Timothy M

2011-12-01

The 2009 pandemic influenza A (H1N1) (pH1N1) virus continues to circulate worldwide. Determining the roles of chronic conditions and bacterial coinfection in mortality is difficult because of the limited data for children with pH1N1-related critical illness. We identified children (<21 years old) with confirmed or probable pH1N1 admitted to 35 US PICUs from April 15, 2009, through April 15, 2010. We collected data on demographics, baseline health, laboratory results, treatments, and outcomes. Of 838 children with pH1N1 admitted to a PICU, the median age was 6 years, 58% were male, 70% had ≥1 chronic health condition, and 88.2% received oseltamivir (5.8% started before PICU admission). Most patients had respiratory failure with 564 (67.3%) receiving mechanical ventilation; 162 (19.3%) received vasopressors, and 75 (8.9%) died. Overall, 71 (8.5%) of the patients had a presumed diagnosis of early (within 72 hours after PICU admission) Staphylococcus aureus coinfection of the lung with 48% methicillin-resistant S aureus (MRSA). In multivariable analyses, preexisting neurologic conditions or immunosuppression, encephalitis (1.7% of cases), myocarditis (1.4% of cases), early presumed MRSA lung coinfection, and female gender were mortality risk factors. Among 251 previously healthy children, only early presumed MRSA coinfection of the lung (relative risk: 8 [95% confidence interval: 3.1-20.6]; P < .0001) remained a mortality risk factor. Children with preexisting neurologic conditions and immune compromise were at increased risk of pH1N1-associated death after PICU admission. Secondary complications of pH1N1, including myocarditis, encephalitis, and clinical diagnosis of early presumed MRSA coinfection of the lung, were mortality risk factors.

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

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.

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.

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,…

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....

[Children of mentally ill parents. Research perspectives exemplified by children of depressed parents].

Science.gov (United States)

Mattejat, F; Wüthrich, C; Remschmidt, H

2000-03-01

Children of psychiatrically ill parents represent a risk group that has received growing attention during the last years. The risk for this group to develop a psychiatric illness is markedly increased due to genetic and psychosocial factors. The development of effective preventive concepts requires a thorough knowledge of the psychosocial factors. In this paper, deficits and problems of research in psychosocial transmission mechanism are discussed taking the example of children of depressive parents. Conclusions from this exemplary considerations may serve as guidelines for future research. The authors suggest that the focus be rather placed on coping strategies and developmental psychopathology. Further, research criteria are formulated that refer to theoretical models as well as to study design.

Effect of Short-Term Supplementation with Ready-to-Use Therapeutic Food or Micronutrients for Children after Illness for Prevention of Malnutrition: A Randomised Controlled Trial in Uganda.

Science.gov (United States)

van der Kam, Saskia; Roll, Stephanie; Swarthout, Todd; Edyegu-Otelu, Grace; Matsumoto, Akiko; Kasujja, Francis Xavier; Casademont, Cristian; Shanks, Leslie; Salse-Ubach, Nuria

2016-02-01

Globally, Médecins Sans Frontières (MSF) treats more than 300,000 severely malnourished children annually. Malnutrition is not only caused by lack of food but also by illnesses and by poor infant and child feeding practices. Breaking the vicious cycle of illness and malnutrition by providing ill children with nutritional supplementation is a potentially powerful strategy for preventing malnutrition that has not been adequately investigated. Therefore, MSF investigated whether incidence of malnutrition among ill children malnutrition rate between 8.4% and 11.5% of which 2% to 3% severe malnutrition, more than half (58%) of the population in the district of Kaabong is considered food insecure. We investigated the effect of two types of nutritional supplementation on the incidence of malnutrition in ill children presenting at outpatient clinics during March 2011 to April 2012 in Kaabong, Karamoja region, Uganda, a resource-poor region where malnutrition is a chronic problem for its seminomadic population. A three-armed, partially-blinded, randomised controlled trial was conducted in children diagnosed with malaria, diarrhoea, or lower respiratory tract infection. Non-malnourished children aged 6 to 59 mo were randomised to one of three arms: one sachet/d of ready-to-use therapeutic food (RUTF), two sachets/d of micronutrient powder (MNP), or no supplement (control) for 14 d for each illness over 6 mo. The primary outcome was the incidence of first negative nutritional outcome (NNO) during the 6 mo follow-up. NNO was a study-specific measure used to indicate progression to moderate or severe acute malnutrition; it was defined as weight-for-height z-score children who died in the RUTF, MNP, and control groups were 0%, 0.8%, and 0.4%. The findings apply to ill but not malnourished children and cannot be generalised to a general population including children who are not necessarily ill or who are already malnourished. A 2-wk nutrition supplementation programme with RUTF

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

Child Attitude Toward Illness Scale (CATIS): A systematic review of the literature.

Science.gov (United States)

Ramsey, Rachelle R; Ryan, Jamie L; Fedele, David A; Mullins, Larry L; Chaney, John M; Wagner, Janelle L

2016-06-01

The objective of this study was to systematically review the literature utilizing the Child Attitude Toward Illness Scale (CATIS) as a measure of illness attitudes within pediatric chronic illness, including epilepsy, and provide recommendations for its use. This review includes an examination of the psychometric properties of the CATIS and the relationship between the CATIS and psychological, academic, behavioral, and illness variables. Electronic searches were conducted using Medline and PsychINFO to identify twenty-two relevant publications. The CATIS was identified as a reliable and valid self-report assessment tool across chronic illnesses, including pediatric epilepsy. Although originally developed for children ages 8-12, the CATIS has demonstrated reliability and validity in youth ages 8-22. The CATIS scores were reliably associated with cognitive appraisal variables and internalizing symptoms. Initial support exists for the relation between illness attitudes and externalizing behavior, academic functioning, and psychosocial care needs. Mixed findings were reported with regard to the relation between illness attitudes and demographic and disease variables, as well as both social and family functioning. The CATIS is a psychometrically sound self-report instrument for measuring illness attitudes and demonstrates clinical utility for examining adjustment outcomes across chronic illnesses, particularly pediatric epilepsy. Copyright © 2016 Elsevier Inc. All rights reserved.

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.

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

Constructing an Explanation of Illness with Children: A Sample Case Study of Juvenile Arthritis

Science.gov (United States)

Capurso, Michele; Lo Bianco, Maria; Cortis, Elisabetta; Rossetti, Corrado

2016-01-01

This study aimed to create a book to explain juvenile arthritis to newly diagnosed children, starting with the narratives of currently ill children. The development of the book followed a socio-constructivist approach and occurred over several stages, including: design of a comic-based workbook; conducting a workshop with ill children to listen to…

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...

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

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.

Prevalence of psychopathology in children of parents with mental illness and/or addiction: an up to date narrative review.

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Leijdesdorff, Sophie; van Doesum, Karin; Popma, Arne; Klaassen, Rianne; van Amelsvoort, Therese

2017-07-01

Children of parents with a mental illness and/or addiction are at high risk for developing a mental illness themselves. Parental mental illness is highly prevalent leading to a serious number of children at high risk. The aim of this review is to give an up-to-date overview of psychopathology in children of parents with various mental illnesses and/or addiction, based on recent literature. Worldwide, 15-23% of children live with a parent with a mental illness. These children have up to 50% chance of developing a mental illness. Parental anxiety disorder sets children at a more specific risk for developing anxiety disorder themselves, where children of parents with other mental illnesses are at high risk of a large variety of mental illnesses. Although preventive interventions in children of mentally ill parents may decrease the risk of problem development by 40%; currently, these children are not automatically identified and offered help. This knowledge should encourage mental health services to address the needs of these children which requires strong collaboration between Child and Adolescent Mental Health Services and Adult Mental Health Services. Directions for further research would be to include both parents, allow for comorbidity and to look deeper into a broader variety of mental illnesses such as autism and personality disorder other than borderline.

Hyperglycemia and acute kidney injury in critically ill children

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Gordillo R

2016-08-01

Full Text Available Roberto Gordillo,1 Tania Ahluwalia,2 Robert Woroniecki3 1Department of Pediatrics, Division of Nephrology, 2Department of Pediatrics, University of Illinois College of Medicine, Peoria, IL, USA; 3Division of Pediatric Nephrology and Hypertension, Stony Brook Children’s Hospital, Stony Brook, NY, USA Background: Hyperglycemia and acute kidney injury (AKI are common in critically ill children and have been associated with higher morbidity and mortality. The incidence of AKI in children is difficult to estimate because of the lack of a standard definition for AKI. The pediatric RIFLE (Risk, Injury, Failure, Loss of kidney function, and End-stage kidney disease criteria can be used to define AKI in children. Various biomarkers in urine and blood have been studied to detect AKI in critically ill children. However, it is not clear whether hyperglycemia is associated with AKI. Our objective was to evaluate the effect of hyperglycemia on kidney function and its effect on neutrophil gelatinase-associated lipocalin (NGAL in children. Methods: We studied retrospective and prospective cohorts of pediatric critically ill subjects admitted to the pediatric intensive care unit (PICU. We analyzed data from admission that included estimated glomerular filtration rate, plasma and urine NGAL, serum glucose and peak glycemia (highest glycemia during PICU admission, and length of hospital and PICU stay from two different institutions. Results: We found that the prevalence of hyperglycemia was 89% in the retrospective cohort and 86% in the prospective cohort, P=0.99. AKI was associated with peak glycemia, P=0.03. There was a statistically significant correlation between peak glycemia and hospital and PICU stays, P=<0.001 and P<0.001, respectively. Urine NGAL and plasma NGAL were not statistically different in subjects with and without hyperglycemia, P=0.99 and P=0.85, respectively. Subjects on vasopressors had lower estimated glomerular filtration rate and higher

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

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

Anxiety and stress in mothers of food-allergic children.

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Lau, Gar-Yen; Patel, Nisha; Umasunthar, Thisanayagam; Gore, Claudia; Warner, John O; Hanna, Heather; Phillips, Katherine; Zaki, Amirah Mohd; Hodes, Matthew; Boyle, Robert J

2014-05-01

Previous reports suggest that parents especially mothers of food-allergic children may have increased anxiety. Studies with an appropriate control group have not been undertaken, and the determinants of such anxiety are not known. We compared measures of anxiety and stress in mothers of food-allergic children and atopic non-food-allergic children, with anxiety and stress in mothers of children with no chronic illness. Cross-sectional study of mothers attending a hospital appointment for their 8- to 16-year-old child. Mothers of children with food allergy, asthma but no food allergy or no chronic illness completed questionnaires including State-Trait Anxiety Inventory, Perceived Stress Scale and measures of anxiety and psychologic adjustment in their child. Forty mothers of food-allergic children, 18 mothers of asthmatic children without food allergy and 38 mothers of children with no chronic illness (controls) were recruited. Mothers of food-allergic children showed increased state anxiety – median anxiety score 38.0 (IQR 30.0, 44.0) food allergy, 27.0 (22.0, 40.0) control p = 0.012; and increased stress – median stress score 18.5 (12.0, 22.0) food allergy, 14.0 (7.5, 19.5)control p = 0.035. No significant differences were seen between mothers in the asthmatic group and controls. In multivariate analysis, previous food anaphylaxis(p = 0.008) and poorly controlled asthma (p = 0.004) were associated with increased maternal anxiety. Child anxiety and adjustment did not differ between food-allergic and control groups. Mothers of food-allergic children have increased anxiety and stress compared with mothers of children with no chronic illness. Anaphylaxis and poorly controlled asthma are associated with maternal anxiety.

Current and Potential Support for Chronic Disease Management in the United States: The Perspective of Family and Friends of Chronically Ill Adults

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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

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...

Assessment of Micronutrient Status in Critically Ill Children: Challenges and Opportunities

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Duy T. Dao

2017-10-01

Full Text Available Micronutrients refer to a group of organic vitamins and inorganic trace elements that serve many functions in metabolism. Assessment of micronutrient status in critically ill children is challenging due to many complicating factors, such as evolving metabolic demands, immature organ function, and varying methods of feeding that affect nutritional dietary intake. Determination of micronutrient status, especially in children, usually relies on a combination of biomarkers, with only a few having been established as a gold standard. Almost all micronutrients display a decrease in their serum levels in critically ill children, resulting in an increased risk of deficiency in this setting. While vitamin D deficiency is a well-known phenomenon in critical illness and can predict a higher need for intensive care, serum concentrations of many trace elements such as iron, zinc, and selenium decrease as a result of tissue redistribution in response to systemic inflammation. Despite a decrease in their levels, supplementation of micronutrients during times of severe illness has not demonstrated clear benefits in either survival advantage or reduction of adverse outcomes. For many micronutrients, the lack of large and randomized studies remains a major hindrance to critically evaluating their status and clinical significance.

The MMPI-2 in chronic psychiatric illness.

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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.

Adenoid ciliostimulation in children with chronic otitis media.

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Andreoli, Steven M; Schlosser, Rodney J; Wang, Ling-Feng; Mulligan, Ryan M; Discolo, Christopher M; White, David R

2013-01-01

Adenoid hypertrophy and chronic adenoiditis are associated with an increased incidence of chronic otitis media. This study intends to determine the relationship between chronic otitis media and dynamic ciliary beat frequency in children undergoing adenoidectomy. Prospective, controlled study. Pediatric tertiary care hospital. Children undergoing adenoidectomy were enrolled. Patients were stratified according to their indication for surgery, including adenotonsillar hypertrophy with obstructive sleep apnea, chronic otitis media with effusion, or recurrent episodes of acute otitis media. Adenoids were harvested using the curette. Tissue was sectioned and allowed to equilibrate in basal media for 24 hours. Cilia-bearing tissue was then stimulated using isoproterenol or methacholine. Ciliary beat frequency was serially reordered and analyzed using the Sisson-Ammons Video Analysis software program. Baseline ciliary beat frequency was similar in all groups (N = 47, total). Using isoproterenol, children with chronic otitis media with effusion demonstrated a blunted dynamic ciliary response at 2 and 3 hours relative to control (P = .0176 and P = .0282). Methacholine-stimulated ciliary beat frequency was not different between each group. At 2 and 3 hours following isoproterenol stimulation, there was a significant blunting of dynamic ciliary beat frequency in children with chronic otitis media with effusion. This ciliary dysfunction may provide a physiological explanation related to chronic adenoiditis in children with chronic otitis media.

Parents, Mental Illness, and the Primary Health Care of Infants and Young Children.

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Fenichel, Emily, Ed.

1993-01-01

This bulletin issue contains five papers on the theme of adults with mental illness who are parents of very young children. "Parents, Mental Illness, and the Primary Health Care of Infants and Young Children" (John N. Constantino) offers the experience of a trainee in a combined residency in pediatrics and psychiatry, focusing on…

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

Gratitude uniquely predicts lower depression in chronic illness populations: A longitudinal study of inflammatory bowel disease and arthritis.

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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).

Etiologies of chronic liver disease in children

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Farahmand F

2001-11-01

Full Text Available Chronic Liver diseases in children is the result of many different diseases including: metabolic, genetic, infectious, toxic and idiopathic causes. This was a case series study on 133 infants and children with age range 6 month to 12 years old, who presented clinically with manifestation of chronic liver disease and were admitted to Children Hospital Medical Center from year 1999 to 2000. In this study, 32 (24.5 percent patients had autoimmune chronic hepatitis, 15 (11.3 percent Glycogen storage diseases, 12 (9 percent extrahepatic biliary atresia, 11 (8.2 percent willson disease, 10 (7.5 percent cryptogenic cirrhosis, 6 (4.5 percent chronic hepatitis C, 5 (3.8 percen chronic hepatitic B, 5 (3.8 percent galactosemia 3 (2.25 percent congenital hepatic fibrosis, 3 (3.8 percent histiocytosis X, 3 (2.25 percent sclerosing cholangitis, 2 (1.5 percent byler’s disease 2 (1.5 percent primary tuberculosis, 1 (0.75 percent choledocalcyst, 1 (0.75 percent Alagyle syndrome. According to our data, chronic liver disease should be considered in infants and children. In our study, the most common causes are found to be: metabolic and genetic diseases (37.5 percent, chronic autoimmune hepatitis (24 percent and biliary disorders (14 percent, that encompass 86 percent of the patients.

Double jeopardy: assessing the association between internal displacement, housing quality and chronic illness in a low-income neighborhood.

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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.

[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.

Causal attributions in Brazilian children's reasoning about health and illness

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Boruchovitch Evely

2000-01-01

Full Text Available INTRODUCTION: At a time when a great number of diseases can be prevented by changing one's habits and life style, investigations have focused on understanding what adults and children believe to be desirable health practices and uncovering the factors associated with successful adherence to such practices. For these, causal attributions for health and illness were investigated among 96 Brazilian elementary school students. METHODS: Ninety six subjects, aged 6 to 14, were interviewed individually and their causal attributions were assessed through 14 true-false items (e.g. people stay well [healthy] because they are lucky. The relationship between the children's causal attributions and demographic characteristics were also examined. RESULTS: Overall, the results were consistent with previous researches. "Taking care of oneself" was considered the most important cause of good health. "Viruses and germs" and "lack of self-care" were the most selected causes of illness. Analyses revealed significant relationship between subjects' causal attribution and their age, school grade level, socioeconomic status and gender. CONCLUSIONS: The study findings suggest that there may be more cross-cultural similarities than differences in children's causal attributions for health and illness. Finding ways to help individuals engage in appropriate preventive-maintenance health practices without developing an exaggerated notion that the individuals can control their own health and illness is a challenge which remains to be addressed by further research.

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

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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.

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.

Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review.

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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.

[Family dynamics and chronic illness: children with diabetes in the context of their families].

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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.

Effect of Short-Term Supplementation with Ready-to-Use Therapeutic Food or Micronutrients for Children after Illness for Prevention of Malnutrition: A Randomised Controlled Trial in Uganda

Science.gov (United States)

van der Kam, Saskia; Roll, Stephanie; Swarthout, Todd; Edyegu-Otelu, Grace; Matsumoto, Akiko; Kasujja, Francis Xavier; Casademont, Cristian; Shanks, Leslie; Salse-Ubach, Nuria

2016-01-01

Background Globally, Médecins Sans Frontières (MSF) treats more than 300,000 severely malnourished children annually. Malnutrition is not only caused by lack of food but also by illnesses and by poor infant and child feeding practices. Breaking the vicious cycle of illness and malnutrition by providing ill children with nutritional supplementation is a potentially powerful strategy for preventing malnutrition that has not been adequately investigated. Therefore, MSF investigated whether incidence of malnutrition among ill children malnutrition rate between 8.4% and 11.5% of which 2% to 3% severe malnutrition, more than half (58%) of the population in the district of Kaabong is considered food insecure. Methods and Findings We investigated the effect of two types of nutritional supplementation on the incidence of malnutrition in ill children presenting at outpatient clinics during March 2011 to April 2012 in Kaabong, Karamoja region, Uganda, a resource-poor region where malnutrition is a chronic problem for its seminomadic population. A three-armed, partially-blinded, randomised controlled trial was conducted in children diagnosed with malaria, diarrhoea, or lower respiratory tract infection. Non-malnourished children aged 6 to 59 mo were randomised to one of three arms: one sachet/d of ready-to-use therapeutic food (RUTF), two sachets/d of micronutrient powder (MNP), or no supplement (control) for 14 d for each illness over 6 mo. The primary outcome was the incidence of first negative nutritional outcome (NNO) during the 6 mo follow-up. NNO was a study-specific measure used to indicate progression to moderate or severe acute malnutrition; it was defined as weight-for-height z-score malnutrition in eastern Uganda. The low incidence of malnutrition in this population may warrant a more targeted intervention to improve cost effectiveness. Trial Registration clinicaltrials.gov NCT01497236 PMID:26859481

Continuous renal replacement therapy for critically ill infants and children

DEFF Research Database (Denmark)

Pedersen, Ole; Jepsen, Søren Bruun; Toft, Palle

2012-01-01

Continuous renal replacement therapy (CRRT) is an important treatment in critically ill children with acute kidney injury (AKI). Over the past decade, CRRT has been the preferred method of renal replacement therapy. We compared children with CRRT-treated adults with AKI in terms of return of kidney...

Critically Ill Children During the 2009–2010 Influenza Pandemic in the United States

Science.gov (United States)

Vaughn, Frances; Sullivan, Ryan; Rubinson, Lewis; Thompson, B. Taylor; Yoon, Grace; Smoot, Elizabeth; Rice, Todd W.; Loftis, Laura L.; Helfaer, Mark; Doctor, Allan; Paden, Matthew; Flori, Heidi; Babbitt, Christopher; Graciano, Ana Lia; Gedeit, Rainer; Sanders, Ronald C.; Giuliano, John S.; Zimmerman, Jerry; Uyeki, Timothy M.

2011-01-01

BACKGROUND: The 2009 pandemic influenza A (H1N1) (pH1N1) virus continues to circulate worldwide. Determining the roles of chronic conditions and bacterial coinfection in mortality is difficult because of the limited data for children with pH1N1-related critical illness. METHODS: We identified children (<21 years old) with confirmed or probable pH1N1 admitted to 35 US PICUs from April 15, 2009, through April 15, 2010. We collected data on demographics, baseline health, laboratory results, treatments, and outcomes. RESULTS: Of 838 children with pH1N1 admitted to a PICU, the median age was 6 years, 58% were male, 70% had ≥1 chronic health condition, and 88.2% received oseltamivir (5.8% started before PICU admission). Most patients had respiratory failure with 564 (67.3%) receiving mechanical ventilation; 162 (19.3%) received vasopressors, and 75 (8.9%) died. Overall, 71 (8.5%) of the patients had a presumed diagnosis of early (within 72 hours after PICU admission) Staphylococcus aureus coinfection of the lung with 48% methicillin-resistant S aureus (MRSA). In multivariable analyses, preexisting neurologic conditions or immunosuppression, encephalitis (1.7% of cases), myocarditis (1.4% of cases), early presumed MRSA lung coinfection, and female gender were mortality risk factors. Among 251 previously healthy children, only early presumed MRSA coinfection of the lung (relative risk: 8 [95% confidence interval: 3.1–20.6]; P < .0001) remained a mortality risk factor. CONCLUSIONS: Children with preexisting neurologic conditions and immune compromise were at increased risk of pH1N1-associated death after PICU admission. Secondary complications of pH1N1, including myocarditis, encephalitis, and clinical diagnosis of early presumed MRSA coinfection of the lung, were mortality risk factors. PMID:22065262

Validation of Persian Version of PedsQL™ 4.0™ Generic Core Scales in Toddlers and Children

Science.gov (United States)

Gheissari, Alaleh; Farajzadegan, Ziba; Heidary, Maryam; Salehi, Fatemeh; Masaeli, Ali; Mazrooei, Amin; Varni, James W; Fallah, Zahra; Zandieh, Fariborz

2012-01-01

Introduction: To evaluate the reliability, validity and feasibility of the Persian version of the Pediatric Quality of Life inventory (PedsQL™ 4.0™ 4.0) Generic Core Scales in Iranian healthy students ages 7-15 and chronically ill children ages 2-18. Methods: We followed the translation methodology proposed by developer to validate Persian version of PedsQL™ 4.0™ 4.0 Generic Core Scales for children. Six hundred and sixty children and adolescents and their parents were enrolled. Sample of 160 healthy students were chosen by random cluster method between 4 regions of Isfahan education offices and 60 chronically ill children were recruited from St. Alzahra hospital private clinics. The questionnaires were fulfilled by the participants. Results: The Persian version of PedsQL™ 4.0™ 4.0 Generic Core Scales discriminated between healthy and chronically ill children (healthy students mean score was 12.3 better than chronically ill children, Presearches. It is necessary to alternate scoring for 2-4 years old questionnaire and to find a way to increase reliability for healthy children aged 8-12 years especially, according to Iranian culture. PMID:22701775

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

Children of mentally ill parents—a pilot study of a group intervention program

Science.gov (United States)

Christiansen, Hanna; Anding, Jana; Schrott, Bastian; Röhrle, Bernd

2015-01-01

Objective: The transgenerational transmission of mental disorders is one of the most prominent risk factors for the development of psychological disorders. Children of mentally ill parents are a vulnerable high risk group with overall impaired development and high rates of psychological disorders. To date there are only a few evidence based intervention programs for this group overall and hardly any in Germany. We translated the evidence based Family Talk Intervention by Beardslee (2009) and adapted it for groups. First results of this pilot study are presented. Method: This investigation evaluates a preventive group intervention for children of mentally ill parents. In a quasi-experimental design three groups are compared: an intervention group (Family Talk Intervention group: n = 28), a Wait Control group (n = 9), and a control group of healthy children (n = 40). Mean age of children was 10.41 years and parental disorders were mostly depressive/affective disorders (n = 30), but a small number also presented with Attention-Deficit/Hyperactivity Disorder (n = 7). Results: Children of mentally ill parents showed higher rates of internalizing/externalizing disorders before and after the intervention compared to children of parents with no disorders. Post intervention children's knowledge on mental disorders was significantly enhanced in the Family Talk Intervention group compared to the Wait Control group and the healthy control group. Parental ratings of externalizing symptoms in the children were reduced to normal levels after the intervention in the Family Talk Intervention group, but not in the Wait Control group. Discussion: This pilot study of a group intervention for children of mentally ill parents highlights the importance of psycho-education on parental mental disorders for children. Long-term effects of children's enhanced knowledge about parental psychopathology need to be explored in future studies. PMID:26539129

Children of mentally ill parents-a pilot study of a group intervention program.

Science.gov (United States)

Christiansen, Hanna; Anding, Jana; Schrott, Bastian; Röhrle, Bernd

2015-01-01

The transgenerational transmission of mental disorders is one of the most prominent risk factors for the development of psychological disorders. Children of mentally ill parents are a vulnerable high risk group with overall impaired development and high rates of psychological disorders. To date there are only a few evidence based intervention programs for this group overall and hardly any in Germany. We translated the evidence based Family Talk Intervention by Beardslee (2009) and adapted it for groups. First results of this pilot study are presented. This investigation evaluates a preventive group intervention for children of mentally ill parents. In a quasi-experimental design three groups are compared: an intervention group (Family Talk Intervention group: n = 28), a Wait Control group (n = 9), and a control group of healthy children (n = 40). Mean age of children was 10.41 years and parental disorders were mostly depressive/affective disorders (n = 30), but a small number also presented with Attention-Deficit/Hyperactivity Disorder (n = 7). Children of mentally ill parents showed higher rates of internalizing/externalizing disorders before and after the intervention compared to children of parents with no disorders. Post intervention children's knowledge on mental disorders was significantly enhanced in the Family Talk Intervention group compared to the Wait Control group and the healthy control group. Parental ratings of externalizing symptoms in the children were reduced to normal levels after the intervention in the Family Talk Intervention group, but not in the Wait Control group. This pilot study of a group intervention for children of mentally ill parents highlights the importance of psycho-education on parental mental disorders for children. Long-term effects of children's enhanced knowledge about parental psychopathology need to be explored in future studies.

[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.

Anxiety and stress in mothers of food-allergic children.

Science.gov (United States)

Lau, Gar-Yen; Patel, Nisha; Umasunthar, Thisanayagam; Gore, Claudia; Warner, John O; Hanna, Heather; Phillips, Katherine; Mohd Zaki, Amirah; Hodes, Matthew; Boyle, Robert J

2014-02-07

Previous reports suggest that parents especially mothers of food-allergic children may have increased anxiety. Studies with an appropriate control group have not been undertaken, and the determinants of such anxiety are not known. We compared measures of anxiety and stress in mothers of food-allergic children and atopic non-food-allergic children, with anxiety and stress in mothers of children with no chronic illness. Cross-sectional study of mothers attending a hospital appointment for their 8- to 16-year-old child. Mothers of children with food allergy, asthma but no food allergy or no chronic illness completed questionnaires including State-Trait Anxiety Inventory, Perceived Stress Scale and measures of anxiety and psychologic adjustment in their child. Forty mothers of food-allergic children, 18 mothers of asthmatic children without food allergy and 38 mothers of children with no chronic illness (controls) were recruited. Mothers of food-allergic children showed increased state anxiety - median anxiety score 38.0 (IQR 30.0, 44.0) food allergy, 27.0 (22.0, 40.0) control p = 0.012; and increased stress - median stress score 18.5 (12.0, 22.0) food allergy, 14.0 (7.5, 19.5) control p = 0.035. No significant differences were seen between mothers in the asthmatic group and controls. In multivariate analysis, previous food anaphylaxis (p = 0.008) and poorly controlled asthma (p = 0.004) were associated with increased maternal anxiety. Child anxiety and adjustment did not differ between food-allergic and control groups. Mothers of food-allergic children have increased anxiety and stress compared with mothers of children with no chronic illness. Anaphylaxis and poorly controlled asthma are associated with maternal anxiety. © 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Needs, expectations and consequences for children growing up in a family where the parent has a mental illness.

Science.gov (United States)

Tabak, Izabela; Zabłocka-Żytka, Lidia; Ryan, Peter; Poma, Stefano Zanone; Joronen, Katja; Viganò, Giovanni; Simpson, Wendy; Paavilainen, Eija; Scherbaum, Norbert; Smith, Martin; Dawson, Ian

2016-08-01

The lack of pan-European guidelines for empowering children of parents with mental illness led to the EU project CAMILLE - Empowerment of Children and Adolescents of Mentally Ill Parents through Training of Professionals working with children and adolescents. The aim of this initial task in the project was to analyse needs, expectations and consequences for children with respect to living with a parent with mental illness from the perspective of professionals and family members. This qualitative research was conducted in England, Finland, Germany, Italy, Norway, Poland and Scotland with 96 professionals, parents with mental illness, adult children and partners of parents with mental illness. A framework analysis method was used. Results of the study highlighted that the main consequences described for children of parental mental illness were role reversal; emotional and behavioural problems; lack of parent's attention and stigma. The main needs of these children were described as emotional support, security and multidisciplinary help. Implications for practice are that professionals working with parents with mental illness should be aware of the specific consequences for the children and encourage parents in their parental role; multi-agency collaboration is necessary; schools should provide counselling and prevent stigma. © 2016 Australian College of Mental Health Nurses Inc.

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

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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.

[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.

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.

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...

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.

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

Autism spectrum symptoms in children with neurological disorders

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Ryland Hilde K

2012-11-01

Full Text Available Abstract Background The aims of the present study were to assess symptoms associated with an autism spectrum disorder (ASD in children with neurological disorders as reported by parents and teachers on the Autism Spectrum Screening Questionnaire (ASSQ, as well as the level of agreement between informants for each child. Methods The ASSQ was completed by parents and teachers of the 5781 children (11–13 years who participated in the second wave of the Bergen Child Study (BCS, an on-going longitudinal population-based study. Out of these children, 496 were reported to have a chronic illness, including 99 whom had a neurological disorder. The neurological disorder group included children both with and without intellectual disabilities. Results Children with neurological disorders obtained significantly higher parent and teacher reported ASSQ scores than did non-chronically ill children and those with other chronic illnesses (p Conclusions The ASSQ identifies a high rate of ASD symptoms in children with neurological disorders, and a large number of children screened in the positive range for ASD. Although a firm conclusion awaits further clinical studies, the present results suggest that health care professionals should be aware of potential ASD related problems in children with neurological disorders, and should consider inclusion of the ASSQ or similar screening instruments as part of their routine assessment of this group of children.

What worries parents when their preschool children are acutely ill, and why: a qualitative study.

OpenAIRE

Kai, J.

1996-01-01

OBJECTIVE: To identify and explore parents' concerns when young children become acutely ill. DESIGN: Qualitative study making use of semi-structured one to one and group interviews with parents of preschool children. SETTING: Disadvantaged inner city community. SUBJECTS: 95 parents of preschool children. RESULTS: Fever, cough, and the possibility of meningitis were parents' primary concerns when their children became acutely ill. Parents' concerns reflected lay beliefs, their interpretation o...

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

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.

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.

Children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies.

Science.gov (United States)

Parslow, Roxanne M; Harris, Sarah; Broughton, Jessica; Alattas, Adla; Crawley, Esther; Haywood, Kirstie; Shaw, Alison

2017-01-13

To synthesis the qualitative studies of children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Systematic review and meta-ethnography. CFS/ME is an important disabling illness, with uncertain cause and prognosis. As a result, children with CFS/ME can find themselves living with greater uncertainty and stigma, exacerbating the impact of the condition. There is a growing body of qualitative research in CFS/ME, yet there has been no attempt to systematically synthesis the studies involving children. Studies exploring the experiences of children diagnosed with CFS/ME, published or unpublished, using qualitative methods were eligible. MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched as well as grey literature, reference lists and contacting authors. Quality assessment was done independently using the Critical Appraisal Skills Programme (CASP) checklist. Studies were synthesised using techniques of meta-ethnography. Ten studies involving 82 children with CFS/ME aged 8-18 were included. Our synthesis describes four third-order constructs within children's experiences: (1) disruption and loss: physical, social and the self; (2) barriers to coping: suspension in uncertainty, problems with diagnosis and disbelief; (3) facilitators to coping: reducing uncertainty, credible illness narratives, diagnosis and supportive relationships and (4) hope, personal growth and recovery. CFS/ME introduces profound biographical disruption through its effects on children's ability to socialise, perform school and therefore how they see their future. Unfamiliarity of the condition, problems with diagnosis and felt stigma prevent children from forming a new illness identity. Children adopt coping strategies such as building credible explanations for their illness. Physical, social, emotional and self-dimensions of life should be included when treating and measuring outcomes from healthcare in paediatric CFS/ME. There is a need for greater recognition

Electrographic status epilepticus in children with critical illness: Epidemiology and outcome.

Science.gov (United States)

Abend, Nicholas S

2015-08-01

Electrographic seizures and electrographic status epilepticus are common in children with critical illness with acute encephalopathy, leading to increasing use of continuous EEG monitoring. Many children with electrographic status epilepticus have no associated clinical signs, so EEG monitoring is required for seizure identification. Further, there is increasing evidence that high seizure burdens, often classified as electrographic status epilepticus, are associated with worse outcomes. This review discusses the incidence of electrographic status epilepticus, risk factors for electrographic status epilepticus, and associations between electrographic status epilepticus and outcomes, and it summarizes recent guidelines and consensus statements addressing EEG monitoring in children with critical illness. This article is part of a Special Issue entitled "Status Epilepticus". Copyright © 2015 Elsevier Inc. All rights reserved.

[Do Attachment Styles of Mentally Ill Parents Impact on the Health-related Quality of Life of their Children?].

Science.gov (United States)

Wiegand-Grefe, Silke; Bomba, Franziska; Tönnies, Sven; Bullinger, Monika; Plass, Angela

2016-01-01

Do Attachment Styles of Mentally Ill Parents Impact on the Health-related Quality of Life of their Children? Parents with a mental disorder often display a problematic attachment style which may impact on their children's health related quality of life (HrQoL). The current study cross-sectionally examines attachment styles (BEPE) in mentally ill parents with underage children (n = 62) and the effect of attachment on their children's HrQoL (KINDL-R). Results show that secure attachment is less represented in parents with a mental health condition than in a healthy reference group. Within the clinical sample, children of mentally ill parents with a secure attachment style exhibit a higher HrQoL than children of mentally ill parents with ambivalent or avoidant attachment styles. These findings indicate not only that problematic attachment styles frequently occur in families with a mentally ill parent, but also suggest that this negatively affects the children's HrQoL. Appropriate interventions should include attachment oriented concepts.

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.

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.

Acute and chronic otitis media.

Science.gov (United States)

Morris, Peter S; Leach, Amanda J

2009-12-01

Otitis media (OM) is a common illness in young children. OM has historically been associated with frequent and severe complications. Nowadays it is usually a mild condition that often resolves without treatment. For most children, progression to tympanic membrane perforation and chronic suppurative OM is unusual (low-risk populations); this has led to reevaluation of many interventions that were used routinely in the past. Evidence from a large number of randomized controlled trials can help when discussing treatment options with families. Indigenous children in the United States, Canada, Northern Europe, Australia, and New Zealand experience more OM than other children. In some places, Indigenous children continue to suffer from the most severe forms of the disease. Communities with more than 4% of the children affected by chronic tympanic membrane perforation have a major public health problem (high-risk populations). Higher rates of invasive pneumococcal disease, pneumonia, and chronic suppurative lung disease (including bronchiectasis) are also seen. These children will often benefit from effective treatment of persistent (or recurrent) bacterial infection.

Parental overprotection, perceived child vulnerability, and parenting stress: a cross-illness comparison.

Science.gov (United States)

Hullmann, Stephanie E; Wolfe-Christensen, Cortney; Ryan, Jamie L; Fedele, David A; Rambo, Philip L; Chaney, John M; Mullins, Larry L

2010-12-01

The current study sought to investigate differences in parenting capacity variables across four disease groups. Parents (N = 425), the majority of whom were mothers, of children with either cancer, asthma, Type 1 diabetes, or cystic fibrosis, completed measures of parental overprotection, perceived child vulnerability, and parenting stress. After controlling for significant demographic variables, parents of children with cystic fibrosis and asthma reported higher perceived child vulnerability than parents of children with either diabetes or cancer, while parents of children with asthma and diabetes reported higher parenting stress than parents of children with cancer or cystic fibrosis. No differences between disease groups were found for parental overprotection. The current study provides support for an illness-specific approach to understanding parenting capacity variables in the context of childhood chronic illnesses.

Children of mentally ill or addicted parents participating in preventive support groups

NARCIS (Netherlands)

Santvoort, F. van; Hosman, C.M.H.; Doesum, K.T.M. van; Janssens, J.M.A.M.

2013-01-01

The large number of children with mentally ill or addicted parents calls for efficient provision of preventive support: interventions should be offered to children most at risk and attune to their risk levels and needs. This study provided insight in the (heterogeneous) needs of children

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

Children's Perceptions of Illness and Health: An Analysis of Drawings

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Mouratidi, Paraskevi-Stavroula; Bonoti, Fotini; Leondari, Angeliki

2016-01-01

Objective: The purpose of this study was to explore possible age differences in children's perceptions of illness and health and to what extent these differ from adults' perceptions. Design: Cross-sectional design. Setting: Selected nursery and primary schools in Greece. Method: The sample consisted of 347 children aged 5-11 years and 114…

Family caregivers: Competence in the care of the chronically ill

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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.

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

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van Staa A

2011-06-01

�� were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%, shorter waiting times (43%, and more activities to meet fellow patients (35%.Conclusion: Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly.Keywords: chronic illness, patient participation, mixed methods research, hospital care

[Children of mentally ill parents. A study of problem awareness in clinical routine practice].

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Bohus, M; Schehr, K; Berger-Sallawitz, F; Novelli-Fischer, U; Stieglitz, R D; Berger, M

1998-05-01

The risk of developing clinically relevant psychiatric disorders in the lifetime course is significantly greater among children of mentally ill parents. A child-adapted programme of information concerning the nature and symptomatology of parental illness is considered to be an important preventive factor, and lies within the domain of the psychiatrist's or therapist's responsibilities. During the developmental phase of a prevention project at Freiburg University's Department of Psychiatry and Psychotherapy, both clinical practice and the level of problem awareness among patients and the therapists were evaluated. Over a period of one year, consecutive interviews involving 114 patients with children under 18 years of age, as well as their respective therapists, were conducted. The results showed that: scarcely any exchanges between children and therapists took place; the extent to which children are informed about parental illness must be considered as small; a high percentage of such children are already evaluated by their parents as disturbed, and the pressing need for support exists.

Treatment and follow-up of children with common chronic liver diseases in children

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LYU Xintong

2017-10-01

Full Text Available Chronic liver diseases in children greatly affect their growth and development and quality of life in future. There are many causes of chronic liver diseases in children, and such causes, diet, and treatment guidance are closely associated with prognosis. This article discusses the guidance and follow-up of common chronic liver diseases in children, such as infantile cholestatic liver disease, chronic hepatitis B, hepatolenticular degeneration, and nonalcoholic fatter liver disease, in order to deepen the understanding of these diseases among patients, raise the awareness of follow-up in medical staff, and improve the cure rate of liver diseases with different causes and children’s quality of life.

Nutritional Needs of the Child with a Handicap or Chronic Illness. Manual II: Clinical Nutrition. Presentations from a National Interdisciplinary Symposium.

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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…

IMMUNOLOGICAL REACTIVITY IN CHILDREN WITH CHRONIC GLOMERULONEPHRITIS

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R. O. Beglarov

2018-01-01

Full Text Available Purpose. The purpose is to study the state of immunological reactivity in children with chronic glomerulonephritis.Patients and methods. 288 children with chronic glomerulonephritis were examined, of which boys accounted for 64.6%, girls — 35.4%. The mean age was 10.63 ± 3.88 years. Children are divided into 3 groups: Group I — 104 children with nephrotic form, Group II — 96 children with hematuric form, Group III — 88 children with mixed form. In the serum are identifi ed: CD3 +, CD4 +, CD8 +, CD16/56 +, CD19 +, CD95 + -subpopulations of lymphocytes; IgA, M, G; cytokines — IL-1β, IL-8, TNF-α, IFN-α, IL-4 and IL-10; the level of circulating immune complexes, the test for the reduction of nitrous tetrazolium (HST test, the phagocytic index and the phagocytic activity of neutrophils.Results. Immunological reactivity in children with chronic glomerulonephritis is characterized by a statistically significant increase in T-helpers (by 36.2% and 41.9% in nephrotic and mixed forms, apoptosis marker (by 50.5%, 51.7% and 65.4% respectively, in children with nephrotic, hematuric and mixed forms, parameters of humoral immunity, the level of circulating immune complexes (2.4, 2.2 and 2.6 times, respectively, in nephrotic, hematuric and mixed forms, p < 0.05, pro-inflammatory cytokines and decreased T-killers, B cells and phagocytic activity. At the same time, the degree of expression of immunoglobulin changes was higher with nephrotic (IgA 2.1 times, IgM 2.2 times, IgG 1.7 times, p < 0.05 and mixed forms (IgA 2.0 times, IgM 1.8 times, IgG 1.6 times, p < 0.05 with chronic glomerulonephritis. The level of TNF-α in children with a hematuric form exceeded the control ones by 3.9 times (p < 0.01, with the nephrotic and mixed form in 4.2 (p < 0.01 and 4.3 times (p < 0.01 respectively. The level of IL-1β and IL-8 was higher in nephrotic form in 2.0 and 1.5 times (p < 0.05, with hematuric — in 1.8 and 1.4 times (p < 0.05, at mixed — in 2

Chronic and Episodic Stress in Children of Depressed Mothers.

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Feurer, Cope; Hammen, Constance L; Gibb, Brandon E

2016-01-01

The goal of this study was to examine chronic and episodic stress in children of mothers with and without a history of major depressive disorder (MDD) during the children's lives. Participants were 255 mothers selected according to their history of MDD (present vs. absent during child's life) and their children (age 8-14; 53% girls, 81% Caucasian). Mothers' and children's histories of MDD were assessed using diagnostic interviews, and their depressive symptoms were assessed via self-report measures. Children's levels of chronic and episodic stress were assessed using a semistructured contextual threat interview. Children of mothers with a history of recurrent MDD, compared to single MDD or no depression, experienced more chronic stress within several domains including peers, mother-child relations, and other family member relations as well as greater episodic dependent interpersonal stress. Each of these group differences was maintained after excluding children with a history of MDD themselves and controlling for their current depressive symptoms. However, only the group difference in chronic peer stress was maintained when controlling for mothers' current depression. The results suggest that children exposed to recurrent maternal MDD experience higher levels of both chronic and episodic stress, at least some of which they contribute to themselves (dependent interpersonal stress) and which is at least partially independent of the effects of children's depression. In addition, much of this stress is associated primarily with current depression in the mother, though it appears that chronic peer stress may remain elevated even after the remission of maternal depression.

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

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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

Hand sanitiser provision for reducing illness absences in primary school children: a cluster randomised trial.

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Patricia Priest

2014-08-01

Full Text Available BACKGROUND: The potential for transmission of infectious diseases offered by the school environment are likely to be an important contributor to the rates of infectious disease experienced by children. This study aimed to test whether the addition of hand sanitiser in primary school classrooms compared with usual hand hygiene would reduce illness absences in primary school children in New Zealand. METHODS AND FINDINGS: This parallel-group cluster randomised trial took place in 68 primary schools, where schools were allocated using restricted randomisation (1:1 ratio to the intervention or control group. All children (aged 5 to 11 y in attendance at participating schools received an in-class hand hygiene education session. Schools in the intervention group were provided with alcohol-based hand sanitiser dispensers in classrooms for the winter school terms (27 April to 25 September 2009. Control schools received only the hand hygiene education session. The primary outcome was the number of absence episodes due to any illness among 2,443 follow-up children whose caregivers were telephoned after each absence from school. Secondary outcomes measured among follow-up children were the number of absence episodes due to specific illness (respiratory or gastrointestinal, length of illness and illness absence episodes, and number of episodes where at least one other member of the household became ill subsequently (child or adult. We also examined whether provision of sanitiser was associated with experience of a skin reaction. The number of absences for any reason and the length of the absence episode were measured in all primary school children enrolled at the schools. Children, school administrative staff, and the school liaison research assistants were not blind to group allocation. Outcome assessors of follow-up children were blind to group allocation. Of the 1,301 and 1,142 follow-up children in the hand sanitiser and control groups, respectively, the

Autism spectrum symptoms in children with neurological disorders.

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Ryland, Hilde K; Hysing, Mari; Posserud, Maj-Britt; Gillberg, Christopher; Lundervold, Astri J

2012-11-12

The aims of the present study were to assess symptoms associated with an autism spectrum disorder (ASD) in children with neurological disorders as reported by parents and teachers on the Autism Spectrum Screening Questionnaire (ASSQ), as well as the level of agreement between informants for each child. The ASSQ was completed by parents and teachers of the 5781 children (11-13 years) who participated in the second wave of the Bergen Child Study (BCS), an on-going longitudinal population-based study. Out of these children, 496 were reported to have a chronic illness, including 99 whom had a neurological disorder. The neurological disorder group included children both with and without intellectual disabilities. Children with neurological disorders obtained significantly higher parent and teacher reported ASSQ scores than did non-chronically ill children and those with other chronic illnesses (pchildren with neurological disorders was moderate to high for the total score and for three sub scores generated from a factor analysis, and low to moderate for single items. The ASSQ identifies a high rate of ASD symptoms in children with neurological disorders, and a large number of children screened in the positive range for ASD. Although a firm conclusion awaits further clinical studies, the present results suggest that health care professionals should be aware of potential ASD related problems in children with neurological disorders, and should consider inclusion of the ASSQ or similar screening instruments as part of their routine assessment of this group of children.

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

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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

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

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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

Characteristics of patients with influenza-like illness, severe acture respiratory illness, and laboratory-confirmed influenza at a major children's hospital in Angola, 2009-2011.

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Cardoso, Yolanda; Oliveira, Erika; Vasconcelos, Jocelyne; Cohen, Adam L; Francisco, Moises

2012-12-15

There are no published data on influenza trends in Angola, where pneumonia is a leading cause of death among young children. This study aims to describe the seasonal trends, types, and subtypes of influenza virus recovered from patients with respiratory illness who were admitted to the major children's hospital in Angola from May 2009 through April 2011. Nasal and oral swabs were collected from patients seen in the outpatient clinic with influenza-like illness (ILI) or hospitalized with severe acute respiratory illness (SARI) and tested for influenza virus by polymerase chain reaction assays. Of 691 samples collected, 334 (48%) were from case patients with ILI, and 357 (52%) were from case patients with SARI. Most (86%) of these children were Angola.

[Thromboprophylaxis in critically ill children in Spain and Portugal].

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Rodríguez Núñez, A; Fonte, M; Faustino, E V S

2015-03-01

Although critically ill children may be at risk from developing deep venous thrombosis (DVT), data on its incidence and effectiveness of thromboprophylaxis are lacking. To describe the use of thromboprophylaxis in critically ill children in Spain and Portugal, and to compare the results with international data. Secondary analysis of the multinational study PROTRACT, carried out in 59 PICUs from 7 developed countries (4 from Portugal and 6 in Spain). Data were collected from patients less than 18 years old, who did not receive therapeutic thromboprophylaxis. A total of 308 patients in Spanish and Portuguese (Iberian) PICUS were compared with 2176 admitted to international PICUs. Risk factors such as femoral vein (P=.01), jugular vein central catheter (P<.001), cancer (P=.03), and sepsis (P<.001), were more frequent in Iberian PICUs. The percentage of patients with pharmacological thromboprophylaxis was similar in both groups (15.3% vs. 12.0%). Low molecular weight heparin was used more frequently in Iberian patients (P<.001). In treated children, prior history of thrombosis (P=.02), femoral vein catheter (P<.001), cancer (P=.02) and cranial trauma or craniectomy (P=.006), were more frequent in Iberian PICUs. Mechanical thromboprophylaxis was used in only 6.8% of candidates in Iberian PICUs, compared with 23.8% in the international PICUs (P<.001). Despite the presence of risk factors for DVT in many patients, thromboprophylaxis is rarely prescribed, with low molecular weight heparin being the most used drug. Passive thromboprophylaxis use is anecdotal. There should be a consensus on guidelines of thromboprophylaxis in critically ill children. Copyright © 2014 Asociación Española de Pediatría. Published by Elsevier España, S.L.U. All rights reserved.

Cognitive Biases in Children and Adolescents With Chronic Pain: A Review of Findings and a Call for Developmental Research.

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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.

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

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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.

Feeding practices for infants and young children during and after common illness. Evidence from South Asia

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Aguayo, Víctor M.

2016-01-01

Abstract Global evidence shows that children's growth deteriorates rapidly during/after illness if foods and feeding practices do not meet the additional nutrient requirements associated with illness/convalescence. To inform policies and programmes, we conducted a review of the literature published from 1990 to 2014 to document how children 0–23 months old are fed during/after common childhood illnesses. The review indicates that infant and young child feeding (IYCF) during common childhood illnesses is far from optimal. When sick, most children continue to be breastfed, but few are breastfed more frequently, as recommended. Restriction/withdrawal of complementary foods during illness is frequent because of children's anorexia (perceived/real), poor awareness of caregivers' about the feeding needs of sick children, traditional beliefs/behaviours and/or suboptimal counselling and support by health workers. As a result, many children are fed lower quantities of complementary foods and/or are fed less frequently when they are sick. Mothers/caregivers often turn to family/community elders and traditional/non‐qualified practitioners to seek advice on how to feed their sick children. Thus, traditional beliefs and behaviours guide the use of ‘special’ feeding practices, foods and diets for sick children. A significant proportion of mothers/caregivers turn to the primary health care system for support but receive little or no advice. Building the knowledge, skills and capacity of community health workers and primary health care practitioners to provide mothers/caregivers with accurate and timely information, counselling and support on IYCF during and after common childhood illnesses, combined with large‐scale communication programmes to address traditional beliefs and norms that may be harmful, is an urgent priority to reduce the high burden of child stunting in South Asia. PMID:26840205

Analysis of a support group for children of parents with mental illnesses: managing stressful situations.

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Gladstone, Brenda M; McKeever, Patricia; Seeman, Mary; Boydell, Katherine M

2014-09-01

We report an ethnographic analysis of a psycho-education and peer-support program for school-aged children of parents with mental illnesses. We conducted a critical discourse analysis of the program manual and observed group interactions to understand whether children shared program goals predetermined by adults, and how, or if, the intervention was responsive to their needs. Children were expected to learn mental illness information because "knowledge is power," and to express difficult feelings about being a child of a mentally ill parent that was risky. Participants used humor to manage group expectations, revealing how they made sense of their parents' problems, as well as their own. Suggestions are made for determining good mental health literacy based on children's preferences for explaining circumstances in ways they find relevant, and for supporting children's competencies to manage relationships that are important to them. © The Author(s) 2014.

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

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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

The experience of critically ill children: A phenomenological study of discomfort and comfort.

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Carnevale, Franco A; Gaudreault, Josée

2013-01-01

Emerging evidence indicates that critically ill children are particularly at risk for incurring significant psychological harm. Little is known about these children's actual experiences. The aim of the study was to examine children's experience of critical illness. The research question was: What are a critically ill child's sources of discomfort and comfort? Interpretive phenomenology was selected as the study's method. Children's accounts were examined to identify what they considered meaningful, in terms of their experienced discomfort and comfort. Data sources included formal and informal interviews with child-participants, drawings provided by some participants, and field-notes documenting observed non-verbal data. Twelve children were enrolled in the study, ranging from 3 to 17years of age; including four girls and eight boys. Although all participants were able to discuss the discomfort and comfort they experienced, they reported difficulties in remembering part or most of their experience. Some participants characterized their Pediatric Intensive Care Unit stay quite favourably or as "not that bad", while some described their experience unfavourably. Diverse types of discomforts were reported, including fears and worries, hurt and pain, invasive interventions, missing significant people, noise, food or eating problems, boredom, physical symptoms, as well as four additional discomforts reported by individual participants. Several sources of comfort were described, including parents, visitors and friends, hospital staff (principally nurses), stuffed animal/favourite blanket, entertainment and play, food, selected medical interventions, thinking of going home, being able to walk or run, sleep, waking up, gifts, along with two other comforts reported by individual participants. Embodiment and a tension between aloneness and being with were identified as the principal phenomena underlying these children's experiences. The findings complement existing knowledge

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

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

Stigmatizing attitudes toward mental illness among primary school children in Kenya.

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Ndetei, David M; Mutiso, Victoria; Maraj, Anika; Anderson, Kelly K; Musyimi, Christine; McKenzie, Kwame

2016-01-01

Literature describing stigmatizing attitudes towards people with mental illness by children in the developing world is lacking. Children's mental health issues in the Kenyan context are especially pertinent due to the increased likelihood of exposure to risk factors and the high prevalence of mental disorders. The objective of the current study was to examine socio-demographic factors associated with the endorsement of stigmatizing attitudes towards people with mental illness among Kenyan school children. We analyzed cross-sectional survey data from 4585 primary school-aged children in standards one through seven in the Eastern Province of Kenya. We examined relationships between the endorsement of stigmatizing attitudes and age, gender, district, religion, being in the standard appropriate for one's age, and parental employment status. Stigma scores decreased with increasing age (β = -0.83; 95 % CI = -0.99 to -0.67). Boys had higher stigma scores compared to girls (β = 1.55; 95 % CI = 0.86-2.24). Students from the rural district had higher average stigma scores as compared to those from the peri-urban district (β = 1.14; 95 % CI = 0.44-1.84). Students who were not in the standard appropriate for their age had lower stigma scores than those who were in the standard typical for their age (β = -1.60; 95 % CI = -2.43 to -0.77). Stigmatizing attitudes toward the mentally ill exist among primary school children in Kenya; thus, anti-stigma interventions are needed, and our findings highlight particular subgroups that could be targeted.

Self-referral and serious illness in children with fever

NARCIS (Netherlands)

Y. van Ierland (Yvette); N. Seiger (Nienke); M. van Veen (Mirjam); A.H.J. van Meurs (Alfred); M. Ruige (Madelon); R. Oostenbrink (Rianne); H.A. Moll (Henriëtte)

2012-01-01

textabstractOBJECTIVE: The goal of this study was to evaluate parents' capability to assess their febrile child's severity of illness and decision to present to the emergency department. We compared children referred by a general practitioner (GP) with those self-referred on the basis of

Individual care plans for chronically ill patients within primary care in the Netherlands: Dissemination and associations with patient characteristics and patient-perceived quality of care.

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Jansen, Daphne L; Heijmans, Monique; Rijken, Mieke

2015-06-01

To examine the use of individual care plans (ICPs) within primary chronic illness care in the Netherlands, and to explore the relationships between ICP use, patient characteristics, and patient-perceived quality of care. Cross-sectional study using survey data from a panel of chronically ill patients and medical registration data provided by their general practices. A sample of 1377 patients with somatic chronic disease(s) randomly selected in general practices throughout the Netherlands, supplemented with a sample of 225 COPD patients, also recruited from general practices. (i) Percentage of ICP use based on self-report by chronically ill patients, and (ii) patient-perceived quality of care as assessed using the Patient Assessment of Chronic Illness Care (PACIC). ICP use among the total generic sample was low (9%), but slightly higher (13%) among patients diagnosed with diabetes or COPD, diseases for which disease management programmes have been set up in the Netherlands. Patients with a low educational level and patients with poor(er) self-rated health were more likely to have an ICP. Compared with patients without an ICP, patients with an ICP more often reported that the care they received was patient-centred, proactive, planned, and included collaborative goal setting, problem-solving, and follow-up support. Findings reveal a discrepancy between practice and policy aspirations regarding ICP use in primary chronic illness care. More research is needed to gain insight into the effectiveness of ICPs to improve the quality of chronic illness care in various patient populations.

Efficacy of an Attachment-Based Intervention Model on Health Indices in Children with Chronic Disease and Their Mothers.

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Dehghani-Arani, Fateme; Besharat, Mohammad Ali; Fitton, Victoria A; Aghamohammadi, Asghar

2018-05-07

Studies have shown significant relationship between health conditions and attachment. This study aimed to examine an attachment-based intervention model named mother-child-disease triangle (MCDT) on health indices in children with chronic disease and their mothers. This randomized trial study included 22 volunteer children aged 12-18 years undergoing medical treatment for a chronic disease and their mothers. After evaluation by 28-form General Health Questionnaire (GHQ-28), inventory of parent and peer attachment (IPPA), 28-form Child Health Questionnaire (CHQ-28) and Illness Perception Questionnaire (IPQ), the mother-child dyads were paired on the basis of IPPA scores. These pairs were then randomly assigned to an experimental or control group. The experimental group received ten 90-min sessions of MCDT over a 7-week period. Meanwhile, the control group received ten simple conversational sessions as a dummy intervention. In accordance with this study's pre-test/post-test design, both groups were evaluated once again after completing their respective treatment. Multivariate analysis of covariance (MANCOVA) showed members of the experimental group to have significantly stronger attachment and better physiological and psychosocial health than those in the control group. These findings suggest that attachment-based interventions can be used to improve the effectiveness of treatment among children with chronic disease and their mothers.

Pediatric Psychology: Applications to the Schools Needs of Children with Health Disorders.

Science.gov (United States)

Perry, Joseph D.; Flanagan, William K.

1986-01-01

A review of pediatric psychology considers interventions by school personnel to promote the school adjustment of children with serious medical illness. Psychosocial and educational impacts of cancer, spina bifida, enuresis, and encopresis are discussed; and suggestions for managing children with chronic health disorders, serious illness, and…