... with Alzheimer’s CCAN Peer Network COPD Caregiving Caregiver Statistics Statistics on Family Caregivers and Family Caregiving Caregiving Population ... Health Care Caregiver Self-Awareness State by State Statistics Caregiving Population The value of the services family ...
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... heart Lifestyle + Risk Reduction Caregiving What Is Caregiver Burnout? Caregiver burnout is caused by too much long-term stress. ... themselves. They begin to show signs of caregiver burnout. Your healthy body, mind and spirit benefit your ...
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Pot, A. M.; Deeg, D. J. H.; van Dyck, R.; Jonker, C.
Examines whether the role of caregiving appraisal explains why stressors in the caregiving situation affect caregivers' psychological distress. Results show that for spouse caregivers, perceived pressure explains the association between their caregiving tasks and psychological distress. Results also show clear mediator effects of perceived…
Dorfman, Lorraine T.; And Others
Investigated correlates of satisfaction and strain in 80 wife caregivers of frail elderly veterans. Support from spouse was the strongest positive predictor of satisfaction with caregiving and the strongest negative predictor of caregiver strain. Self efficacy was the strongest predictor of caregiver life satisfaction. (Author)
... FCA - A A + A You are here Home Depression and Caregiving Order this publication Printer-friendly version ... a more serious depression over time. Symptoms of Depression People experience depression in different ways. Some may ...
... Dictionary of Cancer Terms NCI Drug Dictionary NCI Dictionary of Genetics Terms ... care to a person with cancer. It is a condensed version of our booklet, When Someone You Love Is Being Treated for Cancer . Being a caregiver ...
Sun, Fei; Kosberg, Jordan I; Kaufman, Allan V; Leeper, James D
We studied the coping styles by which family caregivers living in rural areas of Alabama deal with the demands of caring for an older relative with dementia. Data were obtained from a sample of 141 caregivers through the random-digit dialing telephone survey. Two coping styles were identified: deliberate coping and avoidance coping. Deliberate coping was related to higher life satisfaction scores and, avoidance coping was related to lower life satisfaction scores and higher caregiver burden scores. Avoidance coping appeared to moderate the effects of caregiver health on caregiver burden. Social workers should pay greater attention to caregivers with dysfunctional coping styles.
Lund, Line; Ross, Lone; Petersen, Morten Aagaard;
BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers' experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver...... consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver's relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary...... is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives...
Fabiola Yonte Huete
Full Text Available Objectives: The main objective is to determine the degree of burden in the main caregivers of dependent patients, to analyse the profile of informal caregivers and dependent patients. Their claims and help received with caring, the influence of mental deteriorate and duration of care giving regarding the burden of caregivers.Methods: Descriptive cross-sectional observational study amongst 50 caregivers and dependents. We used descriptive statistics and correlational studies. Results: 86 % of caregivers were women, middle aged, son/daughter of the dependent, married, with basic studies, no work outside the home, the average time in the role of caregiver was 16,96 hours a day and 2,1 free hours a day. 64 % of them received family support and 68 % wish to receive economic aid. It was found that for 38 % of the caregivers there was no burden at all, 34 % of them had a minimum burden and 28 % a greater burden.Conclusion: There are some caregivers with moderate or great burden. Our caregiver wishes to receive economic help. Our research shows that the decrease of mental health and the years of evolution do not have a significant statistically influence on caregivers. It is necessary prioritize the interventions and its recipients, provide solutions for caregivers with a greater burden, trying to keep away “caregiver syndrome”.
Butler, Sandra S; Turner, Winston; Kaye, Lenard W; Ruffin, Leah; Downey, Roberta
Family caregivers of older adults frequently experience feelings of burden and depression though they may not come to the attention to health and service providers until they are at a point of crisis. Through a simple screening tool, the Maine Primary Partners in Caring (MPPC) project identified individuals providing care to older adults through rural primary care practices, in order to provide upstream interventions before caregivers were in crisis. This paper describes a sample (n=62) of rural family caregivers identified through their physicians' offices. High levels of caregiver burden and depression were reported. Family support and knowledge of caregiver tasks predicted decreased caregiver burden and depression, while isolation predicted increased caregiver burden. Implications of these results for gerontological social workers are outlined.
... back from Iraq, he depends on me.” “My wife has been diagnosed with MS.” We CAN help ... and I’m his primary caregiver.” “Since my wife’s stroke, I handle everything.” “It’s been 10 years ...
This podcast discusses the role of caregivers in Indian County and the importance of protecting their health. It is primarily targeted to public health and aging services professionals. Created: 12/23/2009 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 12/23/2009.
Full Text Available The objective of this study is to determine whether different types of caregiver support services are associated with different outcomes for male and female caregivers. Information was obtained on 148 caregivers’ use of three types of support services provided by government-contracted agencies: counseling and education services, respite and supplemental services, and financial services. Five caregiver outcomes were included. Use of counseling and education services and financial services was associated with better caregiver outcomes in female caregivers, but not male caregivers. Among caregivers using respite and supplemental types of services, male caregivers showed better outcomes than did female caregivers. Female caregivers who used respite and supplemental services showed worse outcomes in caregiver mastery and caregiver satisfaction than those who did not use the services. Male and female caregivers responded differently to the caregiver support service. Providing female caregivers with counseling services along with respite services may result in added benefits for female caregivers.
Nogueira, Paula Cristina; Rabeh, Soraia Assad Nasbine; Caliri, Maria Helena Larcher; Haas, Vanderlei José
A sectional study that had as its objectives to assess caregiver burden of for caregivers of individuals with Traumatic Spinal Cord Injury (TSCI) and its association with sociodemographic variables (age and sex), health status (self-reported illnesses) and caregiver characteristics (care time in years and daily hours of care). Data were collected by consultation of patient files and individual interviews at home using the instrument, Caregiver Burden Scale (CBScale). The results showed that most burden occurred in the domains: environment, disappointment and general strain. Presenting health problem (for all domains of the CBScale) and spending more hours per day in care (in the domain disappointment) represented the variables associated with burden. Studies of a more confirmatory nature than exploratory between the variables studied can be used to measure the burden obtained in this population of caregivers of individuals with TSCI.
Bruzek, Jennifer L.; Thompson, Rachel H.; Peters, Lindsay C.
Two experiments were conducted to identify the conditions likely to produce resurgence among adult human participants. The preparation was a simulated caregiving context, wherein a recorded infant cry sounded and was terminated contingent upon targeted caregiving responses. Results of Experiment 1 demonstrated resurgence with human participants in…
Epstein, Bernice A.; And Others
Four articles in this special section report on (1) Arizona curriculum for home-based caregivers of the elderly in rural communities (Epstein, Koenig); (2) educational programs for nursing home caregivers (Marsden); (3) extension programs for helping low-income elderly with money management (Koonce); and (4) energy education for the elderly…
Describes the role caregivers play in helping young children dealing with obesity. Examines: (1) causes of childhood obesity; (2) caregiver's position; (3) learning nutrition concepts; (4) preparing and serving healthy foods; (5) encouraging physical activity; (6) working with parents; and (7) assisting an obese child. (SD)
MacNeil, Gordon; Kosberg, Jordan I.; Durkin, Daniel W.; Dooley, W. Keith; DeCoster, Jamie; Williamson, Gail M.
Purpose: Caregivers feeling stress and experiencing mental health problems can be at risk for engaging in abusive acts against elderly care recipients. Potentially harmful behavior (PHB) was used as a measure of caregivers' engagement in, or fear of engagement in, behavior that places dependent care recipients at risk of physical and/or…
This study used an adaptation of the caregivers' stress model to examine the positive aspects of caregiving with 113 Chinese American family caregivers who provided care to their elderly relatives. The hierarchical multiple regression analysis indicated that combination of caregiver background characteristics, stressors, and cultural values had direct effects on positive aspects of caregiving. Unlike previous studies in which cultural values were not measured, this study found that cultural values helped explain positive aspects of caregiving. Specifically, cultural values, caregiver's health, and caregiver's age predicted positive aspects of caregiving. Service implications are discussed based upon the findings.
Pearson, Jane; And Others
Examined aspects of patient status and caregiver perceptions in 46 pairs of elderly psychiatric patients and their caregivers. Found that significant predictors of caregiver burden included disruptive patient behavior, caregiver distress, and patients' functional limitations. Findings suggest that predictors of caregiver burden vary with patient…
Warchol-Biedermann, Katarzyna; Mojs, Ewa; Gregersen, Rikke; Maibom, Kirsten; Millán-Calenti, José C; Maseda, Ana
Alzheimer's disease (AD) is the most prevalent neurodegenerative disease in the world. Most AD patients become dependent on their relatives, i.e. family caregivers. Providing care to a person with AD influences caregiver's life and leads to feelings of grief, which often precede caregiver depression. The purpose of the article was to evaluate the Meuser and Marwit Caregiver Grief Inventory (MM-CGI-50) for use in Polish family caregivers and to find out determinants of grief of family caregivers of AD individuals living in Poland. A sample of 151 spouse and adult child caregivers of community-dwelling AD patients (95 females and 56 males) was interviewed to determine the influence of such factors as caregiver's age, gender, family relation to the care recipient (CR) and caregiving-related changes in caregiver's working time, leisure time and material status to find out the impact of caregiving role on intensity of caregiver grief. Caregiver grief was measured by means of MM-CGI-50. Additionally, carers were administered a questionnaire including patient's and caregiver's demographics. Also, CR's dementia assessment was informant-based and determined with investigator-administered clinical dementia rating (CDR) scale. Of all analyzed factors, only caregiver's informant dementia rating significantly influenced caregiver grief. To conclude, the effect of caregiver's age, gender, family relation to the CR and caregiving-related changes in caregiver's working time; leisure time and material status could not be found. To add, MM-CGI-50 can be effectively used to assess grief in Polish family caregivers of AD patients.
... Your Community Advocate Get Involved Donate Coping With Burnout Being a caregiver of someone with ALS is ... Solutions in Dealing with Burnout Common Causes of Burnout Perfectionism: A perfectionist continually focuses on what needs ...
Kurtin, Sandra; Lilleby, Kathryn; Spong, Jacy
Patients living with multiple myeloma (MM) face complex decisions throughout their journey relative to their diagnosis, options for treatment, and how their disease and treatment choices may affect them physically, emotionally, financially, and spiritually. Patients considering a hematopoietic stem cell transplantation face specific self-management challenges. The availability of a reliable caregiver is a prerequisite to transplantation eligibility. Currently, the majority of clinical management is episodic and provided in the outpatient setting. Therefore, the bulk of care for patients living with MM is provided by the patient together with his or her caregivers. Caregivers face similar challenges to those faced by the patient living with MM. They are required to take in complex information, perform often complicated or technical procedures such as line care or injections, assist the patient with activities of daily living, and attend the myriad of appointments required. Understanding the dynamics of the patient-caregiver relationship, the strengths and weaknesses unique to that relationship, common elements of caregiver stress or strain, and available tools and strategies to promote a sense of control and enhance self-management skills may improve the health-related quality of life for both the patient with MM and his or her caregiver.
Minna Maria Pöysti
Full Text Available The proportion of male caregivers is rapidly increasing. However, there are few large scale studies exploring gender differences in the burden or coping with caregiving. We investigated this among caregivers of patients with dementia. The study cohort consisted of 335 dyads of wife-husband couples from two studies including dementia patients and their spousal caregivers. Baseline mini-mental state examination (MMSE, clinical dementia rating scale (CDR, neuropsychiatric inventory (NPI, cornell depression scale and charlson comorbidity index (CCI were used to describe patients with dementia, Zarit burden scale and geriatric depression scale were used to measure experienced burden and depression of caregivers. Mean age of caregivers was 78 years. There were no differences in depression, satisfaction with life, or loneliness according to caregivers' gender. Male caregivers had more comorbidities than females (CCI 1.9 versus 1.1, P<0.001, and the wives of male caregivers had a more severe stage of dementia than husbands of female caregivers (CDR, P=0.048; MMSE14.0 versus 17.7, P<0.001. However, the mean Zarit burden scale was significantly lower among male than female caregivers (31.5 versus 37.5; P<0.001. Lower education of male caregivers tended to be associated with less experienced burden. In conclusion, male caregivers of dementia experienced lower burden than female caregivers despite care recipients' more severe disease.
Lund, Line; Ross, Lone; Petersen, Morten Aagaard
BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers' experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver......-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree......) and the caregiver's relationship to the patient (spouse/partner, etc.) are related to these experiences. METHODS: In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the 'Cancer Caregiving Tasks, Consequences and Needs...
Robinson, Carole A; Pesut, Barbara; Bottorff, Joan L
There is urgent need to effectively support the well-being of rural palliative family caregivers (FCGs). A mixed method study was conducted with 23 FCGs. Data collection included completion of an assessment questionnaire and semistructured interviews. The most prevalent needs identified by questionnaire were caring for the patient's pain, fatigue, body, and nourishment; FCG's fatigue and need for respite. Yet few FCGs wanted more attention to these needs by healthcare providers. FCGs resisted considering their own personal needs. Instead, they focused on needs related to providing care including to be(come) a palliative caregiver, be skilled and know more, navigate competing wishes, needs, demands, and priorities, and for "an extra pair of hands." Gaps in rural palliative services contributed to low expectations for assistance; reluctance to seek assistance was influenced by FCGs' resourcefulness and independence. Findings suggest that supporting FCGs will most likely be successful when framed in relation to their caregiving role.
... and Reproductive Health Smoking and Tobacco Traumatic Brain Injury PEARLS Gives Seniors with Minor Depression New Hope Administration on Aging (AOA) Medicare (CMS) Family Caregiver Alliance (FCA) National Family Caregivers Association (NFCA) National ...
Smith, Bert Kruger
This document addresses the dilemma faced by families with an aging or disabled member and the stress associated with the role of family caregiver. Emotions experienced by family caregivers, especially when the caregiver is an adult child caring for an elderly or frail parent, are discussed and feelings of desertion, dependence, and sibling…
Szinovacz, Maximiliane E.; Davey, Adam
Purpose: Caregiving research has typically relied on cross-sectional data that focus on the primary caregiver. This approach neglects the dynamic and systemic character of caregiver networks. Our analyses addressed changes in adult child care networks over a 2-year period. Design and Methods: The study relied on pooled data from Waves 1 through 5…
Miller, Baila; Cafasso, Lynda
Conducted meta-analysis of 14 studies to determine gender differences in caregiving stressors and burden. Found essentially no significant gender differences in functional impairment of frail care recipient or total caregiver involvement in care or in money management tasks. Female caregivers were more likely to carry out personal care and…
Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael
Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…
... of Mental Disorders--Fourth Edition (DSM-IV) of GAF scores in the 21-30 range is the minimum... family member no longer serving as a Primary Family Caregiver. Under section 1720G(a)(3)(A)(ii)(V), VA... explains the formula in paragraph (c)(4)(v),...
... your feelings with friends or joining a support group may be a good way to ease the pressure you feel as a caregiver. The Well Spouse Association wellspouse.org A nonprofit group formed to provide support and advocacy for the ...
Okamoto, Kazushi; Momose, Yumiko; Fujino, Ayumi; Osawa, Yukari
The aim of this study is to determine the relationship between life worth living and caregiver burden among caregivers in Japan. We used 111 caregivers of frail elders who completed a self-administered questionnaire including the 8 items developed by Arai et al. (J-ZBI) used as a scale to measure subjective burdens and psychological factors used as covariates other than life worth living. Total score (0-32) of the J-ZBI was dichotomized into "high burden" (> or =21 points) and "low burden" (worth living was significantly associated with caregiver burden. The direct effect of life worth living on caregiver burden (92.9%) was much greater than the indirect effect (7.1%). Our findings suggest that the increase of the sense of life worth living may play an important role in the prevention of the development of caregiver burden.
Chappell, Neena L; Funk, Laura M
This article reviews the international English-language literature on social support and caregiving in gerontology since the early 1990s. The literature has grown, but consensus on the terms' meaning and measurement is lacking. Interest is ongoing in practical help, in benefits of social support, and in demands and negative outcomes for caregivers, with growing but less emphasis on more theoretical questions, on negative outcomes from the receipt of support, and on positive consequences of providing care. Nevertheless, social support is duly recognized as a social determinant of health and receiving attention at policy levels - both are significant shifts from two decades ago and add to the interest this area will receive from researchers in coming decades. There remain many unanswered questions regarding the changing societal context, but it is clear that the social support of others - throughout our lives including old age - will continue in the future, albeit in ever-changing forms.
Kent, Erin E; Rowland, Julia H; Northouse, Laurel; Litzelman, Kristin; Chou, Wen-Ying Sylvia; Shelburne, Nonniekaye; Timura, Catherine; O'Mara, Ann; Huss, Karen
Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers and their tasks, psychosocial needs, and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and their caregivers, warrant increased attention to the roles and demands of caregiving. This article reviews current evidence presented at a 2-day meeting examining the state of the science of informal cancer caregiving that was convened by the National Cancer Institute and the National Institute of Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This article offers recommendations for moving science forward in 4 areas: 1) improving the estimation of the prevalence and burden of informal cancer caregiving; 2) advancing the development of interventions designed to improve outcomes for cancer patients, caregivers, and patient-caregiver dyads; 3) generating and testing strategies for integrating caregivers into formal health care settings; and 4) promoting the use of technology to support informal cancer caregivers. Cancer 2016;122:1987-95. © 2016 American Cancer Society.
Ratnam, E. Venkata; Sivaramalingam, Sethurajan; Vignesh, A. Sri; Vasanth, Elanthendral; Joans, S. Mary
In the last decade, a variety of robotic/intelligent wheelchairs have been proposed to meet the need in aging society. Their main research topics are autonomous functions such as moving toward some goals while avoiding obstacles, or user-friendly interfaces. Although it is desirable for wheelchair users to go out alone, caregivers often accompany them. Therefore we have to consider not only autonomous functions and user interfaces but also how to reduce caregivers' load and support their activities in a communication aspect. From this point of view, we have proposed a robotic wheelchair moving with a caregiver side by side based on the MATLAB process. In this project we discussing about robotic wheel chair to follow a caregiver by using a microcontroller, Ultrasonic sensor, keypad, Motor drivers to operate robot. Using camera interfaced with the DM6437 (Davinci Code Processor) image is captured. The captured image are then processed by using image processing technique, the processed image are then converted into voltage levels through MAX 232 level converter and given it to the microcontroller unit serially and ultrasonic sensor to detect the obstacle in front of robot. In this robot we have mode selection switch Automatic and Manual control of robot, we use ultrasonic sensor in automatic mode to find obstacle, in Manual mode to use the keypad to operate wheel chair. In the microcontroller unit, c language coding is predefined, according to this coding the robot which connected to it was controlled. Robot which has several motors is activated by using the motor drivers. Motor drivers are nothing but a switch which ON/OFF the motor according to the control given by the microcontroller unit.
Conclusions: Behavioral changes in patients (especially irritability and financial constraints had a significant independent impact on the burden experienced by primary caregivers of patients operated for intracranial tumors. Identifying and managing, these are essential for reducing caregiver burden.
de Labra, Carmen; C. Millan Calenti, Jose; Buján, Ana;
attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors. Methods: A stress process model was used to study caregiver’s satisfaction......Objective: The prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less...... (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver’s background and context, stress-related factors, and mediators. Results: The regression model has an adjusted R2 of 0.20, which indicates that having a consanguinity...
Iosif, Ana-Maria; Sciolla, Andres F; Brahmbhatt, Khyati; Seritan, Andreea L
Complex caregiving issues occur in multigenerational families carrying the fragile X mutation and premutation. The same family members may care for children or siblings with fragile X syndrome (FXS) and for elderly parents with fragile X-associated tremor/ataxia syndrome (FXTAS). Family caregivers experience anxiety, depression, neglect of personal health care needs, employment difficulties, and loss of social support, leading to isolation and further psychiatric consequences. There is growing awareness of caregiver burden with regard to parents of children with FXS, but much less is known about the needs of informal caregivers of patients with FXTAS. In this paper, we review the available literature to date and provide suggestions for further exploration of caregivers' needs. Evidence-based strategies to address these needs are included. Many more research studies exploring caregiver burden in multigenerational fragile X families are needed, as well as studies aimed at investigating interventions and their impact on reduction.
Aims\\ud Many patients experience physical, behavioural, cognitive and emotional problems following traumatic brain injury (TBI). They may require continuing care for many years, most of which is provided by informal caregivers, such as spouses, parents, or other family members. The caregiving role is associated with a range of adverse effects including anxiety, depression, poor physical health and lowered quality of life. This article explores issues around caregiver stress; highlighting inte...
Jang, Yuri; Clay, Olivio J.; Roth, David L.; Haley, William E.; Mittelman, Mary S.
Purpose: We examined the impact of caregiver neuroticism on longitudinal change in depression among spouse-caregivers of individuals with Alzheimer's disease receiving either enhanced psychosocial treatment or usual care. We were interested in whether high levels of caregiver neuroticism would lead to a diminished response to the enhanced…
Expert-reviewed information summary about the challenges faced by family caregivers of cancer patients. This summary focuses on typical caregiver roles and concerns, and helpful interventions for caregivers.
Nijboer, C; Triemstra, M; Sanderman, R; van den Bos, GAM
BACKGROUND. Research regarding informal caregiving showed considerable individual variation in responses to cancer caregiving. The current longitudinal study examined determinants of caregiver outcomes in terms of caregiver experiences at 3 months and caregiver's mental health at 6 months after hosp
de Labra, Carmen; C. Millan Calenti, Jose; Buján, Ana;
relationship with the care recipient, suffering from lower levels of subjective burden, and managing individuals with severe cognitive impairment are the most important predictors of higher caregiving satisfaction. Conclusion: Interventions focused on the enhancement of the caregiving satisfaction...... attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors. Methods: A stress process model was used to study caregiver’s satisfaction...... (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver’s background and context, stress-related factors, and mediators. Results: The regression model has an adjusted R2 of 0.20, which indicates that having a consanguinity...
Johnson, P D
Caregivers are often referred to as the "hidden patients." Rarely has caregiving research focused on the positive aspects of caregiving. The purpose of this study was to investigate the lived experiences of caregivers of stroke survivors who have been in the caregiver role for at least 6 months poststroke. The conceptual framework was based on a combination of Lazarus' stress and coping theory and Weiner's attribution theory. A qualitative cross-sectional design was employed. It involved a sample of 10 caregivers from a rural county in Wyoming. A total of 24 categories were identified and five themes emerged: (1) a sense of loyalty; (2) acceptance; (3) a sense of "feeling good"; (4) satisfaction is associated with helping others; and (5) burden is associated with lifestyle change. Participants in this study reported several positive outcomes as well as some negative outcomes in regard to their role as caregivers.
Bornstein, Marc H.; Putnick, Diane L.
Enriching caregiving practices foster the course and outcome of child development. This study examined 2 developmentally significant domains of positive caregiving--cognitive and socioemotional--in more than 127,000 families with under-5 year children from 28 developing countries. Mothers varied widely in cognitive and socioemotional caregiving…
Full Text Available Aim. Caregiver burden (CB in epilepsy constitutes an understudied area. Here we attempt to identify the magnitude of this burden, the factors associated with it, and its impact to caregiver quality of life (QOL. Methods. 48 persons with epilepsy (PWE underwent video-EEG monitoring and their caregivers completed questionnaires providing demographic, disease-related, psychiatric, cognitive, sleep, QOL, and burden information. Results. On regression analysis, higher number of antiepileptic drugs, poorer patient neuropsychological performance, lower patient QOL score, and lower caregiver education level were associated with higher CB. Time allocated to patient care approximated but did not attain statistical significance. A moderate inverse correlation between CB and caregiver QOL physical component summary score and a stronger inverse correlation between CB and caregiver QOL mental component summary score were seen. Conclusion. In a selected cohort of PWE undergoing video-EEG monitoring, we identified modest degree of CB, comparable to that reported in the literature for other chronic neurological conditions. It is associated with specific patient and caregiver characteristics and has a negative effect on caregiver QOL.
Lohne, Vibeke; Høy, Bente; Wilhelm Rehnsfeldt, Arne
This qualitative study is focusing on dignity in nursing homes from the perspective of family caregivers. Dignity is a complex concept and central to nursing. Dignity in nursing homes is a challenge, according to research. Family caregivers are frequently involved in their family members’ daily e...
R Pillai Riddell
Full Text Available BACKGROUND: Pain is largely accepted as being influenced by social context. Unlike most other developmental stages throughout the lifespan, infancy is marked by complete dependence on the caregiver. The present paper discusses the primary importance of understanding the caregiver context when assessing infant pain expression.
Fuhr, Patti; Martinez, Bethany; Williams, Michael
Persons who are elderly, visually impaired, and primary caregivers for ailing or disabled spouses or significant others are a unique population that has not been studied previously. By definition, "informal caregivers" are family members or friends who provide unpaid day-to-day assistance with activities of daily living and are familiar with the…
Full Text Available Cancers surface among one of the leading causes of mortality and morbidity worldwide. With umpteen cases being revealed every year, this killer disease seems to be tightening its grip in India too. Experts say that the incidence of cancer is expected to rise five-fold by the year 2025. As the cases of cancer are increasing, so is the need for the informal caregiving that is rising manifold. Caring for a beloved member of the family or a friend who is suffering from a deadly disease is in itself a big challenge. Taking on new responsibilities on one hand and worrying about the future can be very exhausting at the very least and might quickly lead to burnout. The major concern here is that when you are busy taking care of a person with such a care demanding disease, who is taking care of you? The informal caregivers of cancer patients undergo through fear, emotional burden, anxiety, depression and a lot of physical problems too. Their needs need to be identified and they need support in order to manage their caregiving role without harming their own health and psychological wellbeing. Significant amount of research work has shown that the informal caregivers suffer from the physical, mental and emotional problems that emanate from the complex caregiving situations in chronic diseases like cancer. Mostly the psychological health of the informal caregivers of cancer patients are put at great risk. The purpose of the present study is to review the literature on the psychological health and wellbeing of the informal caregivers of cancer patients along with the role of cultural factors in caregiving in India. Various online journals, PubMed journals, web searches, PsycInfo databases and online publications of various organisations related to the informal caregiving of cancer patients were accessed for the study. A number of review articles, studies and meta-analysis of studies pinpointing on the psychological health of the informal caregivers of cancer
Miller, B; Montgomery, A
Constriction of social and personal activities is one of the most frequently noted consequences of caring for a frail elder. This study analyzed the correlates of perceived limitations in social activities using data from a national sample of the frail elderly and their caregivers. Two research issues were addressed: 1) What differences in demographic, family, and caregiving attributes are associated with variation in perceived restricted social activities? and, 2) How does the process influencing restriction of social activities vary by family relationship of the caregiver? Higher levels of elder dependency and task demands were characteristic of those who reported social limitations, and daughters and wives were more likely to report such limitations than sons and husbands. Subjective assessment of time and task demands, however, were more important influences than objective caregiving activities for all family caregivers.
Van Houtven Courtney
Full Text Available Abstract Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time. Methods Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research. Results The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden and care recipient physical and health care use outcomes. Conclusions Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient
José Mauricio Ocampo
Full Text Available Objectives: To determine the frequency and the associated factors with the presence of care burden imposed by dependent elderly of Buenaventura, Valle; Colombia. Design: A pilot cross-sectional study. Patients and methods: Between March and May of 2006, data were collected on 35 over 60 years old patients who live in the community of Buenaventura, with a score in the Barthel index Results: The mean age and the standard deviation of the patient group was 78.9±10 years. There was a larger proportion of women (68.5%. In the care givers, the regular age and the standard deviation was 49.4±18.8 years, where 91% were women. It was found that for 54.2% of the caregivers there was no burden at all, 40% of them had a minimum burden and the others a greater burden. Bivariate analysis between the care giver’s burden and the number of chronic disease, the score on the minimental test, elderly depression and the family APGAR, resulted in statistic association (p Conclusions: There is an association between aged people, dependent in basic common day activities related with physical aspects, and care giver’s burden. Being the caregivers mostly family members, further studies must be focused on identifying and realizing interventions to prevent or limit the decrease of declining mental health and loss of life quality and the consequent increase of the care giver’s burden.
McRae, Cynthia; Fazio, Emily; Hartsock, Gina; Kelley, Livia; Urbanski, Shawna; Russell, Dan
This study examined loneliness among caregivers of individuals with Parkinson's disease (PD). The sample included 70 caregivers (74% female; 96% spouses) who were currently living with the patient. A postal survey was sent to caregivers of persons with PD on the mailing list of a regional Parkinson association; response rate was 39%. Assessment instruments included the UCLA Loneliness Scale, Social Provisions Scale, Hoehn and Yahr (caregiver version), a perceived Self-Efficacy Scale developed previously for use with PD caregivers, and questions related to both patient and caregiver characteristics. Caregivers reported more loneliness than all similar normative groups except Alzheimer caregivers (Ploneliness. Results indicated that patient variables accounted for only 12% of the variance in loneliness, whereas caregiver variables accounted for an additional 46% of the variance (Ploneliness were less education, lower perceived self-efficacy (both Ploneliness (Ploneliness was significantly predicted by caregiver rather than patient variables, it is possible that strategic interventions for caregivers could ameliorate loneliness.
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Bachner, Yaacov G; Carmel, Sara
This study assesses caregivers' perceived level of open communication about illness and death with their terminally ill relatives and examines the contribution of caregivers' characteristics and situational variables to the explanation of open communication. A total of 236 primary caregivers of terminal cancer patients participated in the study. Level of open communication was measured by 6 items clustered into 1 factor. Caregivers' characteristics were composed of demographic variables, personality traits, and negative emotional reactions to caregiving. The situational variables included the duration and intensity of caregiving, and perceived functioning and suffering of the patient. Caregivers experienced substantial difficulties in communicating with patients about illness and death. Level of open communication was explained by caregivers' emotional reactions (emotional exhaustion, depression) and self-efficacy, as well as by the duration of caregiving. Intervention programs for health professionals need to focus on prevention, identification, and treatment of caregivers at risk for negative reactions to caregiving.
Siefert, Mary Lou; Williams, Anna-leila; Dowd, Michael F.; Chappel-Aiken, Lolita; McCorkle, Ruth
The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by cancer family caregivers. Missing among the predictor variables are the differences by or influence of race/ethnicity. The purpose of this study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics, and determine if any of the patient and family characteristics, including race/ethnicity, predicted outcomes. Cross-sectional surveys were used to determine sociodemographics, psychological and physical health, and burdens of caregiving among 54 caregivers. The analysis consisted of descriptive methods, including frequencies and t tests, and regression modeling. The sample was 35% African American or Hispanic. African American and Hispanic caregivers were younger than white caregivers and more often women, were rarely the spouse of the patient, and frequently had other dependents, including children and older parents. African American and Hispanic caregivers reported lower incomes and more burden related to finances and employment than did white caregivers. When controlling for sociodemographic factors, there was no difference by race/ethnicity on the outcome measures. The experience of caregiving may supersede race/ethnicity and may be its own cultural entity. Areas of concern include the interrelationship between socioeconomic status and race/ethnicity, the absence of cultural frameworks to direct caregiver research, and the question of cultural relevance of measurement tools. PMID:18772665
Full Text Available This integrative review was conducted to describe findings from Thai studies concerning family caregivers for cancer patients. Twenty-three studies that were published from 1994 to 2009 were considered. There were 15 quantitative studies and 8 qualitative studies. The stress and coping model developed by Lazarus and Folkman was the most popular theory that was used to guide the studies. The variables that were explored in the quantitative studies consisted of social support, stress, coping, caregiver burden, quality of life (QOL, and others. The qualitative findings revealed that there were several themes such as the following: the meaning of being family caregivers for cancer patients, the meaning of care, the experiences of caregivers, and the problems and needs of family caregivers in the Thai context. The evidence from the 23 studies reviewed showed that the state of knowledge of cancer caregivers in the Thai context is at an early stage compared with the state of knowledge in Western countries. More research needs to be done to explore the concepts related to negative and positive outcomes of caregiving.
Røthing, Merete; Malterud, Kirsti; Frich, Jan C.
Family members in families with severe chronic disease play importantroles in care-giving. In families affected by Huntington’s disease (HD), caregivers encounter practical and emotional challenges and distress.Enduring caregiver burdens may lead to problems and caregivers are inneed of social...
Examined gender differences in spouse caregiver strain among 554 spouse caregivers, using a multivariate model in which caregiver strains were a function of caregiver stressors and support resources. The effect of gender was found to be small; wives' greater experience of health strains appeared to result from situational factors and traditional…
This study investigated perceptions of 139 familial caregivers of elder adults to answer the question "Is there a significant relationship between appraisal, social distance and the cost of caring for an elder family member?" The cost of caring was analyzed in five dimensions (personal-social restrictions, physical-emotional health, value, care recipient as provocateur and economic cost). Caregivers reported concern for their well-being, feelings of disgust/anger, high social distance and coping by accepting and holding back. Not only were significant relationships found, but caregivers emerged as an at-risk population.
Background: We examined the associations of informal (eg, family members and friends) and formal (eg, physician and visiting nurses) social support with caregiver’s burden in long-term care and the relationship between the number of available sources of social support and caregiver burden. Methods: We conducted a mail-in survey in 2003 and used data of 2998 main caregivers of frail older adults in Aichi, Japan. We used a validated scale to assess caregiver burden. Results: Mult...
Cumming, John McClure
Caregiver burden and distress have been associated with informal caregivers. Research findings on the specific aspects of the caregiving role that influence burden are mixed. Factors such as amount of time per day giving care and specific characteristics about the disease progression have been linked to caregiver burden and distress. Other…
Jain, FA; Nazarian, N.; Lavretsky, H.
Objectives: Family dementia caregivers are at high risk of depression and burnout. We assessed the feasibility of Central Meditation and Imagery Therapy for Caregivers (CMIT-C), a novel 8-week group meditation and guided imagery group therapy program, for dementia caregivers reporting stress because of caregiving responsibilities. Methods: Twelve family dementia caregivers enrolled in CMIT-C. Primary outcomes included depression and anxiety, and secondary outcomes included insomnia, quality o...
Hodge, David R; Sun, Fei
This study used structural equation modeling to examine the effects of spirituality on positive aspects of caregiving (PAC) among a sample of American Latino family members caring for a relative with Alzheimer's disease (AD). Participants consisted of 209 Latino caregivers (CGs) drawn from baseline data from the Resources for Enhancing Alzheimer's Caregivers Health II study. The findings indicate that spirituality is positively related to PAC and may partially mediate the effect of subjective stress on PAC. AD CGs typically provide better care when they perceive the caregiving experience to be satisfying and rewarding. Toward this end, gerontological practitioners should adopt a proactive stance to ensure Latino AD CGs can operationalize their spiritual strengths.
Tomomitsu, Monica Regina Scandiuzzi Valente; Perracini, Monica Rodrigues; Neri, Anita Liberalesso
This article seeks to investigate associations between satisfaction with life and sociodemographic variables, health conditions, functionality, social involvement and social support among elderly caregivers and non-caregivers, as well as between satisfaction and the intensity of stress in the caregiver group. A sample of 338 caregivers was selected according to two items of the Brazilian version of the Elders Life Stress Inventory. A comparison-group of elderly non-caregivers was selected at random, with a similar gender, age and income profile. Data were derived from self-reported questionnaires and scales. Elderly caregivers with low levels of satisfaction and high levels of stress revealed more symptoms of insomnia, fatigue, diseases and worse IADL performance. Those with greater satisfaction and less stress revealed a good level of social support. Insomnia, depression and fatigue were associated with low satisfaction among caregivers, and with fatigue, depression and low social support among non-caregivers. It was considered relevant that instrumental, psychological and informative support can improve the quality of life and the quality of care provided by elderly caregivers, especially if they are affected by unfavorable health and psychosocial conditions and low satisfaction with life.
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Pierce, Linda L; Steiner, Victoria; Havens, Heidi; Tormoehlen, Karen
Thirty-six caregivers of stroke survivors who are new to that role participate in a Web-based support and education intervention over the course of a year. The authors use a secondary analysis of a total of 2,148 e-mail messages that these caregivers posted to the intervention's discussion group. Rigorous content analysis is used to analyze the narrative data coded to spirituality (n = 230 e-mails). Four themes emerge and are drawn to Friedemann's (1995) framework of systemic organization: (a) feeling the presence of a greater power, (b) practicing rituals, (c) being one with nature, and (d) interacting with family and friends. Spirituality gives these caregivers hope and sustenance, but it also helps them express themselves more fully during a difficult time of change. The e-mail discussion data presented here highlight the importance of increased awareness of addressing spirituality in nurse-client encounters and designing interventions to support the caregivers.
Jacobs, Josephine C; Laporte, Audrey; Van Houtven, Courtney H; Coyte, Peter C
A number of OECD countries have implemented policies encouraging longer labour force participation in tandem with policies encouraging informal care provision in the community. To better understand how these policies may affect the available pool of caregivers and labour force participants, we need more evidence about how informal caregiving is related to retirement status and timing. We assessed the association between caregiving intensity and retirement status for individuals aged 55 to 69 using the Canadian 2007 General Social Survey, a cross-sectional survey with 23,404 individuals. We used multinomial logistic regressions to determine whether providing different intensities of informal care (i.e. hours of weekly care) was significantly associated with the likelihood that an individual was fully retired, had retired and returned to work, had never retired and was working part-time or full-time, or was a labour market non-participant. We found that higher intensity caregiving was associated with being fully retired (relative to working full-time) for men and women (relative risk ratios, 2.93 and 2.04, respectively). For women, high intensity caregiving was also associated with working part-time (1.84) and being a labour force non-participant (1.99). Male and female high intensity caregivers were more likely to be retired before age 65. Our results highlight the importance of measuring caregiving intensity and multiple paths to retirement, which are often overlooked in the caregiving and retirement literature. They also indicate that a policy context encouraging both later retirement and more informal care may not be reasonable without flexible work arrangement options.
International best-practice guidelines for the management of first-episode psychosis have recommended the provision of psychoeducation for multifamily groups. While there is ample evidence of their efficacy in multiepisode psychosis, there is a paucity of evidence supporting this approach specifically for first-episode psychosis. We sought to determine whether a six-week caregiver psychoeducation programme geared specifically at first-episode psychosis improves caregiver knowledge and attitudes.
Wolff, Jennifer L; Darer, Jonathan D; Larsen, Kevin L
Health information technology has been embraced as a strategy to facilitate patients' access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients' desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.
Hayslip, Bert, Jr.; Han, GiBaeg; Anderson, Cristina L.
This study examined similarities and differences between active caregivers (adult children and spouses whose family member had Alzheimer's disease) and not-as-yet caregiving adults (adult children and spouses whose family members are older, but do not as yet suffer from Alzheimer's disease). The objective was to determine what factors predict…
Gan, Caron; Gargaro, Judith; Brandys, Clare; Gerber, Gary; Boschen, Kathryn
There is a dearth of support for family members who assume caregiving responsibilities following acquired brain injury (ABI). This qualitative study broadens the understanding of ABI caregiver support needs through data triangulation from multiple interview sources across different settings. Thirty-nine caregivers across urban and rural settings in Ontario participated in focus groups. Interviews focused on ABI support services received, their utility, access barriers, needed supports, and suggestions for service delivery. Key informant interviews were also held with four US researchers funded through the TBI Model Systems, one Canadian provincial government health official, and representatives from 11 Ontario ABI programs including two brain injury associations. Interviews focused on existing or proposed caregiver programs and gaps in services. A coding framework was developed through content analysis, centring on five themes: coping, supports that worked, supports needed, barriers, and ideal world recommendations. Perspectives from those involved in receiving, providing and researching caregiver interventions following ABI were synthesized to provide a thorough, detailed depiction of the ongoing support needs of caregivers. This convergence of evidence underscores that caregiver support needs transcend geographical boundaries and must be comprehensive, accessible, long-term, and encompass education, emotional, and instrumental support. Recommendations for ABI caregiver support services are offered.
Paul B. Perrin, MS
Full Text Available This study developed and implemented the Transition Assistance Program (TAP for stroke caregivers. The program is composed of (1 skill development, (2 education, and (3 supportive problem solving. Sixty-one dyads (n = 122 participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10. The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07 than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention.
Moore, Crystal Dea
A cross-sectional study of 76 family caregivers of older veterans with congestive heart failure utilized the McMaster model of family functioning to examine the impact of family functioning variables (problem solving, communication, roles, affective responsiveness, and affective involvement) on caregiver burden dimensions (relationship burden,…
Mohammadi, Somayyeh; Dehghani, Mohsen; Khatibi, Ali; Sanderman, Robbert; Hagedoorn, Mariet
Attentional bias to pain among family caregivers of patients with pain may enhance the detection of pain behaviors in patients. However, both relatively high and low levels of attentional bias may increase disagreement between patients and caregivers in reporting pain behaviors. This study aims to p
J.C. de Schipper; L.W.C. Tavecchio; M.H. van IJzendoorn
In this study, children's attachment relationships with their professional caregivers in center day care were observed for 48 children. We explored whether more positive caregiving was associated with a more secure attachment relationship and whether this association was stronger for more temperamen
Khanna, Rahul; Madhavan, S. Suresh; Smith, Michael J.; Tworek, Cindy; Patrick, Julie H.; Becker-Cottrill, Barbara
The purpose of this study was to test the psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism. The CGSQ was originally developed to assess burden experienced by parents of children and adolescents with serious emotional and behavioral disorders. Study data was collected from 304 primary…
Swinkels, J.C.; Tilburg, T.G. van; Verbakel, C.M.C.; Broese van Groenou, M.I.
Among older people, partners are the first in line to deliver informal care and compared to other types of caregivers, partners deliver many hours of care in multiple domains for a longer period of time. Attention should therefore be paid to partner caregiving. Using the theoretical stress-coping mo
Lovell, Brian; Wetherell, Mark A
This review will provide an overview of literature that has linked caregiver stress with development and progression of disease, via interactions between the hypothalamic-pituitary-adrenal (HPA) axis and immune systems. The link between caregiver stress and dysregulation of key physiologic mediators has, in the main, focussed on elderly caregivers of spouses with degenerative illness, i.e., dementia. In these populations, aberrations of both endocrinological and immunologic mediators have been demonstrated. However, as a function of their advancing age, elderly populations experience natural dysregulation of the HPA axis and decline of immunologic efficacy. More recently, research has begun to assess whether caregiver stress exacts a similar physiologic toll on non elderly caregivers, i.e., parents of medically fragile children. Dysregulation of endocrinological and immunologic mediators have been observed in both populations, however, more consistently so in the elderly. The authors suggest that, by considering specific characteristics of the care recipient, i.e., type of impairment, and concomitant changes in the caregiving experience, i.e., caregiving intensity, as well as the role of dyadic support, researchers might be better poised to explain discrepant physiologic findings between elderly and non elderly caregivers and reconcile similar physiologic inconsistencies between different, non elderly populations.
Bakas, Tamilyn; Burgener, Sandy C
Predictors of emotional distress, general health, and stroke-related caregiving outcomes were determined in 104 family caregivers of stroke survivors based on a conceptual model derived from Lazarus' theory of stress and coping. Predictors of emotional distress (R(2) =.48, p <.001) were low caregiver self-esteem, high task difficulty, and high threat appraisal. Predictors of poorer health (R(2) =.25, p <.001) were not living with the patient, low household income, and high threat appraisal. Predictors of poor stroke-related care-giving outcomes (R(2) =.45, p <.001) were emotional distress, low benefit appraisal, high task difficulty, and high threat appraisal. Findings suggest potential areas for multidimensional caregiver interventions.
Dich, Nadya; Lange, Theis; Head, Jenny
OBJECTIVES: Studies investigating health effects of work and family stress usually consider these factors in isolation. The present study investigated prospective interactive effects of job strain and informal caregiving on allostatic load (AL), a multisystem indicator of physiological dysregulat......OBJECTIVES: Studies investigating health effects of work and family stress usually consider these factors in isolation. The present study investigated prospective interactive effects of job strain and informal caregiving on allostatic load (AL), a multisystem indicator of physiological...... dysregulation. METHODS: Participants were 7007 British civil servants from the Whitehall II cohort study. Phase 3 (1991-1994) served as the baseline, and Phases 5 (1997-1999) and 7 (2002-2004) served as follow-ups. Job strain (high job demands combined with low control) and caregiving (providing care to aged......). Regardless of job strain, participants with low caregiving burden (below sample median) had lower subsequent AL levels than did non-caregivers (b = -0.22, 95% confidence interval = -0.06--0.37). CONCLUSIONS: The study provides some evidence for adverse effects of stress at work combined with family demands...
Rabkin, Judith G; Albert, Steven M; Rowland, Lewis P; Mitsumoto, Hiroshi
Our objective was to assess the impact of personal, situational and patient characteristics on mood, and changes over time, among ALS caregivers. Seventy-one patient-caregiver pairs were interviewed once and 51 (72%) monthly until endpoints of death or tracheostomy for long-term mechanical ventilation (LTMV). Depressive symptoms and DSM-IV disorders, coping strategies, caregiver burden, satisfaction with care-giving, and patient disease severity were assessed. At baseline, 13% of caregivers had major depression, and 10% had minor depression. Rates declined at last visit before death or LTMV (median interval three months), as did depressive symptoms. Correlates of caregiver depression included reliance on avoidance, perceived burden, fatigue, and feeling that the patient was critical and unappreciative. Half of the 14 caregivers of patients who planned LTMV were depressed at baseline, declining to 8% at endpoint, versus 16% (9/57) among caregivers of patients who died, declining non-significantly to 11%. While few personal or situational factors were correlated with caregiver distress, patients' plans and degree of supportiveness influenced caregiver mood. Verbal comments of caregivers clarified the distinction between sadness and psychiatric depression. The high baseline rate of depression among caregivers of patients who planned tracheostomy decreased as caregivers instituted major changes in patient care or personal counseling.
Alexandra J. Werntz
Full Text Available Informal caregiving for dementia is common and often affects caregiver mental health. In addition to typical stressors faced by caregivers of persons with dementia (PWDs, rural caregivers often face additional stressors associated with living in more remote locations; unfortunately, this group is largely understudied. Ninety-three caregiver–PWD dyads completed measures of social support, perceived control, self-efficacy, burden, and cognitive functioning. Measures of PWD activities of daily living and mental functioning were also collected. These variables were hypothesized to predict caregiver self-reported symptoms of depression, anxiety, and stress. Contrary to predictions, only caregiving-related self-efficacy and caregiver burden predicted the caregiver’s mental health. Future interventions for improving rural caregiver self-reported mental health should target cognitions associated with caregiving self-efficacy and caregiver burden. Health care providers for rural families should focus on ways to reduce feelings of caregiver burden and provide caregivers with useful skills and tools for caregiving.
Rodday, Angie Mae; Pedowitz, Elizabeth J; Mayer, Deborah K; Ratichek, Sara J; Given, Charles W; Parsons, Susan K
Using the Caregiver Reaction Assessment (CRA), we assessed positive reactions and burdens of the caregiving experience among parental caregivers (n = 189) of children scheduled to undergo hematopoietic stem cell transplant. Although widely used in non-parental caregivers, the CRA has not been used in parents of pediatric patients. Reliability (Cronbach's alpha: .72-.81 vs. .63) and concurrent validity (correlation: .41-.61 vs. .28) were higher for negatively framed than positively framed subscales. Results indicate that the caregiving experience is complex. The parents experienced high caregiver's esteem and moderate family support, but also negative impacts on finances and schedule, and to a lesser degree, health. Compared to non-parental caregivers, parental caregivers experienced higher esteem and more impact on finances and schedule.
Loi, Samantha M; Dow, Briony; Ames, David; Moore, Kirsten; Hill, Keith; Russell, Melissa; Lautenschlager, Nicola
Previous research demonstrates that physical activity has psychological benefits for people of all ages. However, it is unclear whether people caring for a frail or ill relative would derive similar psychological benefits, considering the potentially stressful caregiver role. This article reviews the current literature describing the effect of physical activity interventions on the psychological status of caregivers. A search from January 1975 to December 2012 identified five intervention studies investigating physical activity and psychological status in caregivers. These focused on female Caucasian caregivers who were older than 60 years. The physical activity interventions improved stress, depression and burden in caregivers, but small sample sizes, short-term follow up and varying results limited the generalizability of the findings. There were few trials investigating male caregivers, and most care-recipients were people with dementia. Studies with caregivers of different ages and gender, with a range of physical activity interventions, are needed to clarify whether physical activity has psychological benefits for caregivers.
Full Text Available Alessandro Iavarone,1,2 Antonio Rosario Ziello,3,4 Francesca Pastore,3 Angiola Maria Fasanaro,3 Carla Poderico5 1Neurological and Stroke Unit, CTO Hospital, 2Italian Association on Alzheimer's Disease (AIMA, 3Memory Clinic, Neurological Unit, AORN Cardarelli Hospital, Naples, Italy; 4Clinical Research, Telemedicine and Telepharmacy Centre, University of Camerino, Camerino, Italy; 5Department of Psychology, Second University of Naples, Caserta, Italy Background: Alzheimer’s disease (AD causes considerable distress in caregivers who are continuously required to deal with requests from patients. Coping strategies play a fundamental role in modulating the psychologic impact of the disease, although their role is still debated. The present study aims to evaluate the burden and anxiety experienced by caregivers, the effectiveness of adopted coping strategies, and their relationships with burden and anxiety. Methods: Eighty-six caregivers received the Caregiver Burden Inventory (CBI and the State-Trait Anxiety Inventory (STAI Y-1 and Y-2. The coping strategies were assessed by means of the Coping Inventory for Stressful Situations (CISS, according to the model proposed by Endler and Parker in 1990.Results: The CBI scores (overall and single sections were extremely high and correlated with dementia severity. Women, as well as older caregivers, showed higher scores. The trait anxiety (STAI-Y-2 correlated with the CBI overall score. The CISS showed that caregivers mainly adopted task-focused strategies. Women mainly adopted emotion-focused strategies and this style was related to a higher level of distress. Conclusion: AD is associated with high distress among caregivers. The burden strongly correlates with dementia severity and is higher in women and in elderly subjects. Chronic anxiety affects caregivers who mainly rely on emotion-oriented coping strategies. The findings suggest providing support to families of patients with AD through tailored
Wittenberg-Lyles, Elaine; Oliver, Debra Parker; Demiris, George; Petty, Bethany; Day, Michele
Involving caregivers in hospice interdisciplinary team (IDT) meetings has been offered as a potential solution to caregivers' unmet communication needs. This case study details one caregiver's participation in her mother's hospice interdisciplinary team care planning meetings, both in person and via videophone technology. This preliminary case is offered as part of a larger National Cancer Institute sponsored study investigating involvement of caregivers in team meetings using videophone tech...
Røhder, Katrine; Trier, Christopher Høier; Brennan, Jessica;
The caregiving system was originally described by Bowlby and has been conceptually developed by George and Solomon (1989; 1996; 2008). It is “the other half” of the social bond between parent and child and is described as a behavioural system in its own right that is reciprocally linked to the ch......The caregiving system was originally described by Bowlby and has been conceptually developed by George and Solomon (1989; 1996; 2008). It is “the other half” of the social bond between parent and child and is described as a behavioural system in its own right that is reciprocally linked...
Wong, Cindy C; Wallhagen, Margaret I
To identify strategies to assist family caregivers of individuals with frontotemporal dementia (FTD) in dealing with their caregiving demands, nurses must understand these family members' unique needs and how they currently deal with their demands. The purpose of this study was to examine the relationship between coping and caregiver physical and mental health among FTD family caregivers. Participants were primary caregivers of individuals with FTD (with behavioral symptoms) living at home (N = 61). A small positive association was noted between problem-focused coping and caregiver physical health (r = 0.29, p caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (β = 0.46, p caregiver mental health and explained approximately 14% of its variance. These findings support the potential value of emotion-focused coping strategies when dealing with behavioral symptoms manifested by individuals with FTD.
Lara de Sa Neves Loureiro
Full Text Available A cross-sectional, epidemiological study aimed to estimate the prevalence of burden among family caregivers of impaired elderly residents in the city of João Pessoa, and to identify associations between the mean burden and social and demographic characteristics of the elderly and the caregivers. A total number of 240 elderly residents in a previously drawn census tract participated in this research. The sample was composed of 52 elderly and their caregivers. For data collection, a questionnaire was applied with questions on social and demographic characteristics of elderly and caregivers, and the Burden Interview Scale was used. Results showed a high prevalence of burden among caregivers (84.6%, in which a statistically significant association was found with the following characteristics: retired elderly, elderly as head of family, spousal caregivers, and caregivers with less education. The findings of this study may contribute to the development of activities focused on formal and emotional support for the caregivers.
Horowitz, Amy; Goodman, Caryn R.; Reinhardt, Joann P.
Purpose: This study examines the extent and independent correlates of congruence between disabled elders and their caregivers on several aspects of the caregiving experience. Design and Methods: Participants were 117 visually impaired elders and their caregivers. Correlational analyses, kappa statistics, and paired t tests were used to examine the…
Dunst, Carl J.; Kassow, Danielle Z.
Findings from two research syntheses of the relationship between caregiver sensitivity and secure infant attachment and one research synthesis of factors associated with increased caregiver use of a sensitive interactional style are presented. The main focus of analysis was the extent to which different measures of caregiver contingent social…
Wittenberg, Elaine; Borneman, Tami; Koczywas, Marianna; Del Ferraro, Catherine; Ferrell, Betty
Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH) Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care. PMID:28257110
Campbell, Philippa H.; Coletti, Catherine Ehret
The purpose of this study was to identify the extent to which multidiscipline early intervention providers identified and demonstrated caregiver-teaching strategies. A total of 78 providers submitted 205 videotaped segments to illustrate 1 of 5 caregiver-teaching strategies (i.e., demonstration; caregiver practice with feedback; guided practice;…
Daire, Andrew P.; Mitcham-Smith, Michelle
Family caregiving for individuals with dementia is an increasingly complex issue that affects the caregivers' and care recipients' physical, mental, and emotional health. This article presents 3 key culturally sensitive caregiver models along with clinical interventions relevant for mental health counseling professionals.
Full Text Available Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care.
Kling, Adria; Campbell, Philippa H.; Wilcox, Jeanne
Caregiver reports of problematic activities/routines with their young children with physical disabilities and types of assistive technology used as solutions were investigated in this study. In addition, caregiver competence with assistive technology use and ways in which caregivers received information and training were also examined. A subset of…
Nijboer, C; Triemstra, M; Mulder, M; Sanderman, R; van den Bos, GAM
This study describes patterns of caregiving experiences in partners of patients with cancer (N=148) over a 6-month period. Caregiving experiences were assessed by means of the Caregiver Reaction Assessment Scale (CRA), which consists of four negative dimensions and one positive subscale: Disrupted S
Cheryl Kai Ting Chua
Full Text Available Informal caregivers (IC are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL, mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI, Caregiver Quality of Life Index—Cancer (CQOLC, Center for Epidemiologic Studies Depression Scale—Revised (CESD-R, and Work Productivity and Activity Impairment Questionnaire (WPAI were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%, and eight ICs had high burden (ZBI > 17. Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.
Full Text Available Abstract In general, the experience of providing assistance to and dealing with the complications experienced by a person with Alzheimer's disease puts caregivers in a situation of high risk, vulnerability, and stress, causing serious physical and emotional problems. However, some caregivers adopt a resilient mindset, which helps them to experience and express positive feelings as well as lower their burden in relation to the care. This positive experience occurs because caregivers perceive the process of caring as less adverse. They face the situation of care with a more positive mindset and are able to resist and maintain adaptive functioning. The objective of the present narrative literature review was to emphasize the need to develop intervention programs for caregivers based on salutogenic models of resilience, resistance, and personal growth to promote positive individual, family, and community resources.
Hagedoorn, M.; Sanderman, R.; Buunk, B.P.; Wobbes, T.
Objectives. This study examined a possible explanation for the frequently reported finding that female caregivers perceive more psychological distress than do male caregivers. Our 'identity-relevant stress' hypothesis asserts that feelings of incompetence with respect to caregiving are more strongly
Lazelle E Benefield
Full Text Available Lazelle E Benefield1, Cornelia Beck21College of Nursing, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA; 2Pat & Willard Walker Family Memory Research Center, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USAAbstract: Family caregivers are responsible for the home care of over 34 million older adults in the United States. For many, the elder family member lives more than an hour’s distance away. Distance caregiving is a growing alternative to more familiar models where: 1 the elder and the family caregiver(s may reside in the same household; or 2 the family caregiver may live nearby but not in the same household as the elder. The distance caregiving model involves elders and their family caregivers who live at some distance, defined as more than a 60-minute commute, from one another. Evidence suggests that distance caregiving is a distinct phenomenon, differs substantially from on-site family caregiving, and requires additional assistance to support the physical, social, and contextual dimensions of the caregiving process. Technology-based assists could virtually connect the caregiver and elder and provide strong support that addresses the elder’s physical, social, cognitive, and/or sensory impairments. Therefore, in today’s era of high technology, it is surprising that so few affordable innovations are being marketed for distance caregiving. This article addresses distance caregiving, proposes the use of technology innovation to support caregiving, and suggests a research agenda to better inform policy decisions related to the unique needs of this situation.Keywords: caregiving, family, distance, technology, elders
Harrop, Clare; Gulsrud, Amanda; Shih, Wendy; Hovsepyan, Lilit; Kasari, Connie
Restricted and repetitive behaviors (RRBs) are a core feature of autism spectrum disorder (ASD). Compared to the social-communication impairments, we know considerably less about why children engage in RRBs and if and how to intervene with these behaviors. As a result, early intervention has typically focused on social-communication. In this study, we were interested in understanding how child RRBs changed following an intervention targeting social-communication behaviors and if caregiver training changed how they responded to their child's RRBs. Eighty-six toddlers with ASD and their caregivers received one of two interventions: caregivers were either actively coached while playing with their child (JASPER) or attended information sessions about ASD. On three different occasions (when they entered the study, following 10 weeks of intervention and 6-months after) caregivers were filmed playing with their child. From these recordings, we coded child RRBs and caregiver responses to these behaviors. Child RRBs remained relatively stable following intervention in both groups, but increased when the children returned at 6-months. Caregivers who received one-on-one coaching (JASPER) responded to a greater number of their child's RRBs and their responses were rated as more successful. Our study showed that a short-term social-communication intervention delivered through caregivers had "spillover effects" on how they also responded to their child's RRBs. Interventions targeting social-communication behaviors should also examine how these treatments affect child RRBs and how caregiver responses to these behaviors may change following training. Autism Res 2017, 0: 000-000. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.
Full Text Available Abstract Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.
Females care for individuals with chronic illness more commonly than males and have different attitudes to illness. Additionally, they experience greater burden and reduced quality of life, when compared to their male counterparts. Since knowledge has been shown to be related to burden, we sought to determine whether there were gender differences in knowledge acquisition during a six-week caregiver psychoeducation programme (CPP).
Shiatsu therapy is a manual discipline originating from traditional Chinese medicine. It is developing as an interesting form of support in the fight against stress and chronic fatigue. Shiatsu is used in some hospitals to support not only patients but also caregivers, to prevent burnout.
This podcast discusses role of family caregivers and the importance of protecting their health. It is primarily targeted to public health and aging services professionals. Created: 12/23/2009 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 12/23/2009.
... seniors more susceptible to adverse drug events. These changes increase an older person’s sensitivity to a potential adverse effect. A “ ... worked or didn’t work. For seniors with cognitive impairments, caregivers play a ... changes in health conditions and effectively describing problems to ...
Townsend, Aloen L.
Family caregivers may face ethical dilemmas when deciding whether a parent or spouse should enter a nursing home. There is considerable evidence that decisions about institutionalization are usually stressful and difficult for family members. This study obtained qualitative and quantitative data from two studies conducted at the Margaret Blenkner…
Chenoweth, Barbara; Spencer, Beth
Caregivers of family members with dementia of the Alzheimer's type were surveyed for their experiences with early symptoms, obtaining a diagnosis, home care, and institutionalization. At each stage in the process of providing care there are new and different stresses that can be ameliorated by appropriate professional assistance. (Author)
Leblanc, A J; Driscoll, A K; Pearlin, L I
We present a stress process framework as a model for understanding how religiosity may influence the expansion of stress. Survey data from informal caregivers to a spouse with Alzheimer's disease or a related dementia (n = 200) were analyzed to observe the relationships among three variables: (1) care-related stress, (2) religiosity, and (3) depression. This sample, which has a mean age of 73 years, demonstrates high rates of self-described religiosity, church attendance and frequency of prayer. Using these criteria, women and racial/ethnic minority caregivers are the most religious. In a series of multivariate analyses, we found strong evidence to suggest that there is an expansion of care-related stressors leading to depression in this sample. Religiosity, as measured here, appears to be largely unrelated to stress and stress expansion. We found no evidence to suggest that it moderates stress expansion. However, these data do suggest that one stressor--feelings of role overload--is correlated with greater levels of self-perceived religiosity, which among caregivers who have health problems of their own is associated with greater depressive symptomatology. Thus, for a sub-sample of these caregivers, we find weak evidence of a mediation effect wherein one subjective, non-organizational dimension of religiosity is a conduit of the harmful effects of stress (rather than a suppressor). Results and data limitations are discussed in relation to better assessing the role of religiosity and spirituality in the experience of the stress process.
Full Text Available With the increasing prevalence of people in developing countries who suffer strokes, the long-term care of people who have had a stroke and who are living with disabilities has substantial consequences for caregivers and their respective families. As the caregiver plays a pivotal role in the rehabilitation of the people who have had a stroke, the objectives of this study constitute an investigation into the complexities of caregiving, including both perceptions and experiences of the healthcare system. Semi-structured interviews were utilised to elicit post-stroke experiences of six caregivers. The challenge the South African context adds to these experiences was probed. The data were analysed qualitatively by thematic and content analysis. Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available. The results are interpreted within a biopsychosocial approach, concluding with the concerns raised by caregivers on the support they require from the healthcare system in order to provide home-based care. Opsomming Met die toenemende voorkoms van beroerte in ontwikkelende lande bring die langdurige versorging van pasiënte met gestremdheid beduidende gevolge vir sorggewers en hulle onderskeie gesinne mee. Aangesien die sorggewer ‘n sleutelrol in die rehabilitasie van die beroertepasiënt speel, behels die doelstellings van hierdie studie ‘n ondersoek na die verwikkeldhede van versorging, wat sowel persepsies as ondervinding van die gesondheidsorgstelsel insluit. Semi- gestruktureerde onderhoude is aangewend om die na-beroerte ondervindings van ses sorggewers te peil. Die uitdaging wat die Suid- Afrikaanse konteks tot hierdie ondervindings meebring is ondersoek. Die data is
El-Mallakh, Peggy; Yates, Brittany Evans; Adkins, Sarah
Diabetes mellitus (DM) is common among those with schizophrenia, but little is known about family members' roles in the care of relatives who have both schizophrenia and DM. The purpose of this descriptive correlational study was to examine DM knowledge and caregiver burden among 27 family caregivers of people with schizophrenia and DM. Findings indicate that DM knowledge was low. Objective caregiver burden was highest for providing assistance with daily living activities. Subjective burden was highest for preventing the care recipient from keeping people awake at night and dealing with the care recipient's non-adherence to DM care. Family caregivers are in need of education and support in the caregiving role.
Ostrowski, Madeleine; Mietkiewicz, Marie-Claude
Care for Alzheimers' patients is quite a burden on the caregivers. Guides have been devoted to improve their knowledge about the disease and to help to provide the best care for the patient. A recent study on the reluctance of caregivers'spouses to seek external help, shows that none of 31 spouses had read a caregiver's guide. The aim of this study was to assess if caregiver's guides would help caregivers to deal with sleep/wake disorders. Amongst the 46 French guides, published between 1988 and 2013, thirty three raised the subject of the night sleep with more or less details. In these guides sleep disturbances are considered either as a symptom to be monitored or a natural aging process to be supported. We made a survey of the content of the caregiver's guides, of their goals and why they have been designed to. Then we analyze how the night sleep issue is dealt with in the guides, and eventually we consider the place to be granted to the patient in the management of his/her sleep disturbances.
Beals, K P; Wight, R G; Aneshensel, C S; Murphy, D A; Miller-Martinez, D
This study examines the role that mid-life and older wives and mothers play in promoting medication adherence among their HIV-infected husbands or adult sons who require daily living assistance. Interviews were conducted with 112 caregiving dyads, with caregivers reporting on their own behaviours and attitudes towards medications, and care-recipients (persons living with HIV [PLH]) providing information about their own adherence practices. By examining how caregiver characteristics, behaviours, and attitudes may influence PLH adherence it is explicitly recognized that caregivers and PLH are linked within a caregiving dyad. Findings indicate that caregivers often remind PLH to take medications, but these reminders are not significantly associated with adherence. Caregivers also report strong attitudes about medication hassles, concerns over treatment failure and general concerns about adherence. Controlling for background characteristics, high perceived adherence hassles on the part of the caregiver were associated with low PLH adherence, providing evidence of shared influence within the caregiving dyad. Adherence interventions may maximize their effectiveness if they consider the role of the family caregiver because these data suggest that caregiver attitudes are linked with PLH adherence behaviours.
Kao, Hsueh-Fen Sabrina
The role of caregiver gender in the likelihood of institutionalization of Taiwanese older adults was explored in this study. A sample of 78 male and 69 female primary caregivers of elderly patients who had experienced a stroke at least 6 months prior to the study were interviewed. Logistic regression analyses were applied to examine direct and interaction effects of the elderly adult's functioning the caregiver's available resources, the degree of caregiver burden, perceived public opinion toward institutionalization, and precipitating events on the likelihood of institutionalization among Taiwanese male and female caregivers. Women were more likely to institutionalize the older adult for whom they cared. The proposed model correctly predicted the likelihood of institutionalization of an elderly adult based on male versus female caregivers at the 92% level. Perceived public opinion toward institutionalization was the most significant predictor of institutionalization for both genders. Perceived public opinion toward institutionalization has a strong influence on whether or not caregivers institutionalize an elderly relative. This is consistent with Chinese culture in which public opinion has a much stronger effect on individual behavior than in the United States. American concepts of "minding one's own business" do not exist in Taiwan. It is logical that the older adults' level of functioning would predict the likelihood of institutionalization regardless of caregiver gender. In terms of caregiver characteristics, working hours in male caregivers is more predictive, and the quality of the relationship with the older adult was more predictive of institutionalization for female caregivers.
Fong, Hiu-fai; Bennett, Colleen E; Mondestin, Valerie; Scribano, Philip V; Mollen, Cynthia; Wood, Joanne N
The objective of this study was to describe caregiver perceptions about mental health services (MHS) after child sexual abuse (CSA) and to explore factors that affected whether their children linked to services. We conducted semi-structured, in-person interviews with 22 non-offending caregivers of suspected CSA victimschild advocacy center in Philadelphia. Purposive sampling was used to recruit caregivers who had (n=12) and had not (n=10) linked their children to MHS. Guided by the Health Belief Model framework, interviews assessed perceptions about: CSA severity, the child's susceptibility for adverse outcomes, the benefits of MHS, and the facilitators and barriers to MHS. Interviews were audio-recorded, transcribed, coded, and analyzed using modified grounded theory. Recruitment ended when thematic saturation was reached. Caregivers expressed strong reactions to CSA and multiple concerns about adverse child outcomes. Most caregivers reported that MHS were generally necessary for children after CSA. Caregivers who had not linked to MHS, however, believed MHS were not necessary for their children, most commonly because they were not exhibiting behavioral symptoms. Caregivers described multiple access barriers to MHS, but caregivers who had not linked reported that they could have overcome these barriers if they believed MHS were necessary for their children. Caregivers who had not linked to services also expressed concerns about MHS being re-traumatizing and stigmatizing. Interventions to increase MHS linkage should focus on improving communication with caregivers about the specific benefits of MHS for their children and proactively addressing caregiver concerns about MHS.
The financial difficulty of dementia caregivers and its effects on mental health has gained increasing attention from researchers. The present study examines the longitudinal relationship between financial difficulty and the depressive symptoms of dementia caregivers using matching methods to account for potential selection bias. Propensity score matching methods and mixed-effects models were used to determine the effects of financial difficulty on depressive symptoms among caregivers participating in the Resources for Enhancing Alzheimer's Caregiver Health (REACH) intervention program. Propensity score matching confirmed that caregivers experiencing financial difficulty were more likely to have depressive symptoms. The results suggest that dementia caregivers require support for their financial difficulty. Future research should fully examine the complex relationship between financial difficulty and the mental health of caregivers and how this issue can be addressed through assessment and intervention methods.
Nirbhay N. Singh
Full Text Available Caregivers often manage the aggressive behavior of individuals with intellectual and developmental disabilities that reside in community group homes. Sometimes this results in adverse outcomes for both the caregivers and the care recipients. We provided a 7-day intensive Mindfulness-Based Positive Behavior Support (MBPBS training to caregivers from community group homes and assessed the outcomes in terms of caregiver variables, individuals’ behaviors, and an administrative outcome. When compared to pre-MBPBS training, the training resulted in the caregivers using significantly less physical restraints, and staff stress and staff turnover were considerably reduced. The frequency of injury to caregivers and peers caused by the individuals was significantly reduced. A benefit-cost analysis showed substantial financial savings due to staff participation in the MBPBS program. This study provides further proof of concept for the effectiveness of MBPBS training for caregivers, and strengthens the call for training staff in mindfulness meditation.
Full Text Available Background: We examined the associations of informal (eg, family members and friends and formal (eg, physician and visiting nurses social support with caregiver’s burden in long-term care and the relationship between the number of available sources of social support and caregiver burden. Methods: We conducted a mail-in survey in 2003 and used data of 2998 main caregivers of frail older adults in Aichi, Japan. We used a validated scale to assess caregiver burden. Results: Multiple linear regression demonstrated that, after controlling for caregivers’ sociodemographic and other characteristics, informal social support was significantly associated with lower caregiver burden (β = −1.59, P < 0.0001, while formal support was not (β = −0.30, P = 0.39. Evaluating the associations by specific sources of social support, informal social supports from the caregiver’s family living together (β = −0.71, P < 0.0001 and from relatives (β = −0.61, P = 0.001 were associated with lower caregiver burden, whereas formal social support was associated with lower caregiver burden only if it was from family physicians (β = −0.56, P = 0.001. Compared to caregivers without informal support, those who had one support (β = −1.62, P < 0.0001 and two or more supports (β = −1.55, P < 0.0001 had significantly lower burden. This association was not observed for formal support. Conclusions: Social support from intimate social relationships may positively affect caregivers’ psychological wellbeing independent of the receipt of formal social support, resulting in less burden.
Dasch, Kimberly B; Russell, Heather F; Kelly, Erin H; Gorzkowski, Julie A; Mulcahey, Mary Jane; Betz, Randal R; Vogel, Lawrence C
This study examined coping among caregivers of youth with spinal cord injuries (SCI). Using a cross-sectional survey study design, 164 caregivers completed a demographics questionnaire and the Brief COPE. Their children, youth with SCI ages 7-18, completed the Kidcope. T-tests were conducted to examine differences in caregiver coping by demographic and injury-related factors. Further, logistic regression models were evaluated to examine predictive relationships between caregiver coping and youth coping. Several demographic and injury-related factors were related to caregiver coping, including caregiver gender, race, and education, as well as youth gender, age at injury, and time since injury. In the logistic regressions, two caregiver coping strategies were related to youth coping: caregiver self-blame coping was related to youth self-criticism, and caregiver behavioral disengagement coping (giving up attempts to cope) was related to youth blaming others coping. The findings suggest that caregiver coping may play a role in the coping of their children, and should be considered when addressing coping among youth with SCI.
Nathália R. S. Kimura
Full Text Available Introduction: There is growing recognition of early onset dementia (EOD as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD and their caregivers. Objective: To analyze the psychosocial impact of EOD in family caregivers. Methods: The study design was qualitative. Nine EOD caregivers (7 women were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Results: Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. Conclusion: The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.
Ågård, Anne Sophie; Egerod, Ingrid; Tønnesen, Else
and rehabilitation in general hospital wards, rehabilitation facilities and at home. Consequently, millions of spouses become informal caregivers. Little is known, however, about the concrete challenges spouses face in post-intensive care unit everyday life. DESIGN: Explorative, qualitative grounded theory study...... role. Post-ICU caregiving comprised five patient dimensions: observing, assisting, coaching, advocating and managing activities. CONCLUSIONS: Spouses play a vital and multifaceted role in post-intensive care unit recovery. The findings can inform healthcare professionals in their efforts to prepare...... intensive care unit patients' families for the time following intensive care unit and hospital discharge. Hospital staff, rehabilitation experts and primary care professionals must acknowledge spouses' important contribution from intensive care unit admission throughout recovery....
Prescribed medication, self-medication or doping the use of psychoactive substances by caregivers is varied. Doping behaviour in the care environment is under-estimated and trivialised. It is often difficult to spot at an early stage and yet this consumption is not without consequences on the quality and safety of work. Gérard-Marchant general hospital in Toulouse integrates this issue into its professional risk management policy.
This integrative review was conducted to describe findings from Thai studies concerning family caregivers for cancer patients. Twenty-three studies that were published from 1994 to 2009 were considered. There were 15 quantitative studies and 8 qualitative studies. The stress and coping model developed by Lazarus and Folkman was the most popular theory that was used to guide the studies. The variables that were explored...
Margaret (Maggie Williams
Full Text Available Despite efforts to scale up access to antiretroviral therapy (ART, particularly at primary health care (PHC facilities, antiretroviral therapy (ART continues to be out of reach for many human immunodeficiency virus (HIV-positive children in sub-Saharan Africa. In resource limited settings decentralisation of ART is required to scale up access to essential medication. Traditionally, paediatric HIV care has been provided in tertiary care facilities which have better human and material resources, but limited accessibility in terms of distance for caregivers of HIV-positive children. The focus of this article is on the experiences of caregivers whilst accessing ART for HIV-positive children at PHC (decentralised care facilities in Nelson Mandela Bay (NMB in the Eastern Cape, South Africa. A qualitative, explorative, descriptive and contextual research design was used. The target population comprised caregivers of HIV-positive children. Data were collected by means of in-depth individual interviews, which were thematically analysed. Guba's model was used to ensure trustworthiness. Barriers to accessing ART at PHC clinics for HIV-positive children included personal issues, negative experiences, lack of support and finance, stigma and discrimination. The researchers recommend standardised programmes be developed and implemented in PHC clinics to assist in providing treatment, care and support for HIV-positive children.
Einstein Francisco Camargos
Full Text Available This study evaluated the consumption of psychotropic medications by caregivers of elderly patients with or without dementia. This was a cross-sectional study conducted at all geriatric units in Brasília, Brazil, during a two-month period. Structured interviews were performed with 311 caregivers of people with or without dementia and they completed questionnaires. Among the caregivers, 196 (63% were caregivers of patients with dementia and 115 (37% were caregivers of patients without dementia. Forty-four caregivers (14.1% were taking psychotropic drugs (benzodiazepines or antidepressants, and this usage was more frequent among caregivers of patients with dementia (p<0.01. Twenty-two caregivers of patients with dementia (11.4% had used sleeping pills after beginning care, compared with only five (4.3% caregivers of patients without dementia (p<0.01. In conclusion, this study found that caregivers of patients with dementia took psychotropic drugs (benzodiazepines and antidepressants more frequently than the ones of patients without dementia.
Douglas, Sara L; Mazanec, Polly; Lipson, Amy; Leuchtag, Mary
Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient's condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members' well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.
Maja Lopez Hartmann
Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly.Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010.Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability.Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.
Maja Lopez Hartmann
Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010. Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.
Irwin, Lauren M; Skowronski, John J; Crouch, Julie L; Milner, Joel S; Zengel, Bettina
This study examined whether caregivers who exhibit high risk for child physical abuse differ from low-risk caregivers in reactions to transgressing children. Caregivers read vignettes describing child transgressions. These vignettes varied in: (a) the type of transgression described (moral, conventional, personal), (b) presentation of transgression-mitigating information (present, absent), and (c) whether a directive to avoid the transgression was in the vignette (yes, no). After reading each vignette, caregivers provided ratings reflecting their: (a) perceptions of transgression wrongness, (b) internal attributions about the transgressing child, (c) perceptions of the transgressing child's hostile intent, (d) own expected negative post-transgression affect, and (e) perceived likelihood of responding to the transgression with discipline that displayed power assertion and/or induction. For moral transgressions (cruelty, dishonesty, hostility, or greed), mitigating information reduced caregiver expectations that they would feel negative affect and, subsequent to the transgression, use disciplinary strategies that display power assertion. These mitigating effects were smaller among at-risk caregivers than among low-risk caregivers. Moreover, when transgressions disobeyed a directive, among low-risk caregivers, mitigating information reduced the expectation that responses to transgressions would include inductive disciplinary strategies, but it did not do so among at-risk caregivers. In certain circumstances, compared to low-risk caregivers, at-risk caregivers expect to be relatively unaffected by transgression-mitigating information. These results suggest that interventions that increase an at-risk caregiver's ability to properly assess and integrate mitigating information may play a role in reducing the caregiver's risk of child physical abuse.
Full Text Available The object of this article is to examine the reliability of the Brazilian version of the Zarit Caregiver Burden Interview (ZBI. The instrument is a 22-item scale assessing the extent to which caregivers view their responsibilities as having an adverse impact on their social life, health, emotional well-being, and finances. We assessed 50 primary informal caregivers of demented patients coming from 3 different health care centers, using the test-retest method. Analysis of the results showed an intraclass reliability coefficient of 0.88, while Cronbach's coefficient alpha was 0.77 for the test and 0.80 for the retest items. The Brazilian version of ZBI shows sufficient reliability, comparable to the original version.
Michael Gabriel Fetterolf
Full Text Available With biomedicine at the forefront of our culture's understanding of illness, true healing is often neglected. It has become common practice to place elderly persons with Alzheimer's disease in nursing homes or long-term care facilities that do not always regard the sufferers' well-being as a top priority. This article draws from familial caregiving roles as a basis for understanding personhood, which I take to be a bridge between the world of a caregiver and the world of an Alzheimer's sufferer. Furthermore, through the modeling of professional caregiving strategies, I show how one might form meaningful relationships in long-term care facilities, and likewise provide the aging and afflicted person with forms of healing.
Avieli, Hila; Ben-David, Sarah; Levy, Inna
This study is one of the few that has compared volunteers' professional quality of life (PQL), which includes secondary traumatic stress (STS), burnout, and compassion satisfaction (CS), to those of professional caregivers. In addition, the research compared the ethical behavior of volunteers with that of professional therapists and examined the connection between years of experience, ethical behavior, and PQL. One hundred eighty-three volunteers and professional caregivers filled out a sociodemographic questionnaire, an Ethical Behavior Questionnaire and the Professional Quality of Life (ProQOL) questionnaire. The results indicated that professional caregivers report lower levels of STS and burnout, and higher levels of CS and ethical behavior compared with volunteer caregivers. Moreover, the findings suggest that ethical behavior correlates with STS, burnout, and CS. Ethical behavior has a protective value for mental health caregivers. The discussion emphasizes the value of a professional code of ethics and ethical training for professional and volunteering caregivers.
Jones, Patricia S; Winslow, Betty W; Lee, Jerry W; Burns, Margaret; Zhang, Xinwei Esther
Family members caring for aging parents experience both negative and positive outcomes from providing care. Theoretical explanations for negative outcomes have been developed. There is need for models that explain and predict positive outcomes. This article describes the evolution of the Caregiver Empowerment Model (CEM) to explain and predict positive outcomes of family caregiving. Although empirical findings support positive outcomes of family caregiving, less attention has been given to theoretical rationale for positive effects. The CEM predicts that, in the presence of filial values and certain background variables, caregiving demands are appraised as challenges instead of stressors. Appraising caregiving demands as a challenge, finding meaning, and using certain types of coping strategies are posited to be associated with growth and well-being. The CEM extends our understanding of the complexity of the caregiving experience, and can serve as a framework to guide in developing and testing theory-based interventions to promote positive outcomes.
Damashek, Amy; Williams, Natalie A.; Sher, Kenneth; Peterson, Lizette
Objective The present study used a case-crossover design to investigate the association of caregiver alcohol consumption and supervision to children's injury occurrence and severity. Method A community sample of 170 mothers of toddlers was interviewed biweekly about their children's daily injuries for a period of 6 months. Results Proximal caregiver-reported alcohol use predicted higher likelihood of injury occurrence and higher injury severity, whereas caregiver-reported supervision predicte...
Northouse, Laurel L
Family caregivers face multiple demands as they care for their loved ones with cancer, and these demands have increased dramatically in recent years. Patients with cancer now receive toxic treatments in outpatient settings and return home to the care of their family members. Some patients receive in-home infusions, which were unheard of a few years ago. Family caregivers provide tasks that were previously provided by nurses; however, caregivers lack the educational preparation that nurses receive.
Demiris, George; Oliver, Debra Parker; Washington, Karla; Fruehling, Lynne Thomas; Haggarty-Robbins, Donna; Doorenbos, Ardith; Wechkin, Hope; Berry, Donna
The Problem Solving Intervention (PSI) is a structured, cognitive-behavioral intervention that provides people with problem-solving coping skills to help them face major negative life events and daily challenges. PSI has been applied to numerous settings but remains largely unexplored in the hospice setting. The aim of this pilot study was to demonstrate the feasibility of PSI targeting informal caregivers of hospice patients. We enrolled hospice caregivers who were receiving outpatient services from two hospice agencies. The intervention included three visits by a research team member. The agenda for each visit was informed by the problem-solving theoretical framework and was customized based on the most pressing problems identified by the caregivers. We enrolled 29 caregivers. Patient's pain was the most frequently identified problem. On average, caregivers reported a higher quality of life and lower level of anxiety postintervention than at baseline. An examination of the caregiver reaction assessment showed an increase of positive esteem average and a decrease of the average value of lack of family support, impact on finances, impact on schedules, and on health. After completing the intervention, caregivers reported lower levels of anxiety, improved problem solving skills, and a reduced negative impact of caregiving. Furthermore, caregivers reported high levels of satisfaction with the intervention, perceiving it as a platform to articulate their challenges and develop a plan to address them. Findings demonstrate the value of problem solving as a psycho-educational intervention in the hospice setting and call for further research in this area.
Williams, Allison M; Wang, Li; Kitchen, Peter
This is the second in a series of papers that deal with care-giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long-term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care-giving experience and the caregiver supports received, while also examining the differences in these across EOL and non-EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non-EOL caregivers. The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers.
Expert-reviewed information summary about the challenges faced by family caregivers of cancer patients. This summary focuses on typical caregiver roles and concerns, and helpful interventions for caregivers.
Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A
Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.
Hagedoorn, Mariët; Sanderman, Robbert; Buunk, Bram P.; Wobbes, Theo
OBJECTIVES: This study examined a possible explanation for the frequently reported finding that female caregivers perceive more psychological distress than do male caregivers. Our 'identity-relevant stress' hypothesis asserts that feelings of incompetence with respect to caregiving are more strongly associated with psychological distress in women than in men. Women who feel competent with respect to caregiving may report levels of distress as low as that of male caregivers. DESIGN: This study has a cross-sectional design. METHODS: Psychological distress (CES-D) was measured in 32 female and 36 male partners of patients suffering from various types of cancer. Furthermore, partners' perceptions of caregiving performance and patients' perceptions of partners' supportive and unsupportive behaviour were assessed. RESULTS: Only among female partners were self-efficacy and personal accomplishment regarding caregiving found to be positively linked to distress. Also, in contrast to male partners, female partners reported more distress when they acted less supportively. CONCLUSION: The difference in psychological distress between female and male caregivers seems to be carried by a subgroup of partners who feel that they are not doing a very good job at caregiving.
Rishma Gohil; Roxanne Crosby-Nwaobi; Angus Forbes; Ben Burton; Phil Hykin; Sobha Sivaprasad
Purpose To assess the caregiver burden and factors determining the burden in patients receiving ranibizumab therapy for neovascular AMD (nAMD). Methods This is a cross-sectional questionnaire survey of 250 matched patient caregiver dyads across three large ophthalmic treatment centres in United Kingdom. The primary outcome was the subjective caregiver burden measured using caregiver reaction assessment scale (CRA). Objective caregiver burden was determined by the caregiver tasks and level of ...
Lilly, Meredith B; Laporte, Audrey; Coyte, Peter C
The recent growth of the home care sector combined with societal and demographic changes have given rise to concerns about the adequacy of the supply of family and friend caregivers. Potential caregivers face competing time pressures that pull them in the direction of the labour market on one hand, and towards unpaid caregiving duties on the other. This paper examines the influence of unpaid caregiving on the labour supply of a cohort of working-aged caregivers in Canada, with particular emphasis on caregiving intensity. Results suggest that caregivers are heterogeneous in both their caregiving inputs and associated labour market responses, thereby underscoring the importance of controlling for caregiving intensity when measuring labour supply. The negative influence of primary caregiving on labour supply appears to be at the level of labour force participation, rather than on hours of work or wages.
de Azevedo, Gisele Regina; Santos, Vera Lúcia Conceição de Gouveia
This study aimed to analyze what looking after physically disabled persons with spinal cord injury by trauma means to their caregivers and family members. The analysis of the testimony of eight caregivers, obtained in open interviews, which was methodologically based on the Social Representations Theory (SR), pointed out two main routes: coping with the suffering process in care practice and the troubled waters that permeate this suffering process. These two routes, characterized as SR Central Core and Peripheral System, respectively, consisted of themes like the way of looking at impairment, affectivity, religiosity, social-economical changes and (lack of) technical and institutional support. The results show a handicapped caregiver dedicated to look after someone who is physically disabled, considered incapacitated, and who leads his or her chores with distress and privations, based on guilt and religiosity, supported by ambiguous affection and affected by deteriorating social-economical changes and (lack of) technical and institutional support to practice an activity that implies so many peculiarities. The transformation alternatives of these caregivers' daily life principally lead to a symbiosis of disability with the patient - to live for the physically disabled - or yet, for a few, a sketch to restart personal life projects - to live with the physically disabled.
Holmberg, Michelle D; Flum, Marian; West, Cheryl; Zhang, Yuan; Qamili, Shpend; Punnett, Laura
Focus groups were conducted with over 150 certified nursing assistants (CNAs) in seven nursing homes to obtain their opinions on how the work environment supported or impeded their caregiving to residents. Strong opinions emerged about work environment interference with CNAs' ability to provide quality and comprehensive care. Participants also believed that their supervisors did not respect the value of the care and nurturing that CNAs provided. This contrasted with the respect that CNAs voiced for residents. The findings highlight the need for improved relationships between CNAs and management and suggest some desirable features of work organization in nursing homes.
Hughes, Sheryl O; Cross, Matthew B; Hennessy, Erin; Tovar, Alison; Economos, Christina D; Power, Thomas G
Researchers use the Caregiver's Feeding Styles Questionnaire (CFSQ) to categorize parent feeding into authoritative, authoritarian, indulgent, and uninvolved styles. The CFSQ assesses self-reported feeding and classifies parents using median splits which are used in a substantial body of parenting literature and allow for direct comparison across studies on dimensions of demandingness and responsiveness. No national norms currently exist for the CFSQ. This paper establishes and recommends cutoff points most relevant for low-income, minority US samples that researchers and clinicians can use to assign parents to feeding styles. Median scores for five studies are examined and the average across these studies reported.
G. J. Eckert
Full Text Available Objectives. Dental caries is the most common chronic childhood disease, with numerous identified risk factors. Risk factor differences could indicate the need to target caregiver/patient education/preventive care intervention strategies based on population and/or individual characteristics. The purpose of this study was to evaluate caries risk factors differences by race/ethnicity, income, and education. Methods. We enrolled 396 caregiver-toddler pairs and administered a 105-item questionnaire addressing demographics, access to care, oral bacteria transmission, caregiver's/toddler's dental and medical health practices, caregiver's dental beliefs, and caregiver's/toddler's snacking/drinking habits. Logistic regressions and ANOVAs were used to evaluate the associations of questionnaire responses with caregiver's race/ethnicity, income, and education. Results. Caregivers self-identified as Non-Hispanic African-American (44%, Non-Hispanic White (36%, Hispanic (19%, and other” (1%. Differences related to race/ethnicity, income, and education were found in all risk factor categories. Conclusions. Planning of caregiver/patient education/preventive care intervention strategies should be undertaken with these caries risk factor differences kept in mind.
Rumbaugh, Andrew E.
This study investigated what were the most highly-valued reasons among Muslim caregivers for sending their children to Lebanese evangelical Christian schools. Muslim caregivers (N = 1,403) from four Lebanese evangelical Christian schools responded to determine what were the most highly-valued reasons for sending their children to an evangelical…
Yedidia, Michael J.; Tiedemann, Amy
How aligned are the needs of family caregivers with the professional supports available to them? This article presents the results of the first phase of a study, in which four focus group interviews were conducted with a total of 40 family caregivers to elicit their views of the kinds of assistance they expect from nurses and social workers. The…
Werner, Perla; Mittelman, Mary S.; Goldstein, Dovrat; Heinik, Jeremia
Purpose: The stigma experienced by the family members of an individual with a stigmatized illness is defined by 3 dimensions: caregiver stigma, lay public stigma, and structural stigma. Research in the area of mental illness suggests that caregivers' perception of stigma is associated with increased burden. However, the effect of stigma on…
Athay, M. Michele
This study utilized the Satisfaction with Life Scale to investigate the life satisfaction of caregivers for youth receiving mental health services (N = 383). Specifically, this study assessed how caregiver life satisfaction relates to youth symptom severity throughout treatment. Hierarchical linear modeling with a time-varying covariate was used…
Lau, Sabrina; Chong, Mei Sian; Ali, Noorhazlina; Chan, Mark; Chua, Kia Chong; Lim, Wee Shiong
The Zarit Burden Interview allows caregiver burden to be interpreted from a total score. However, recent studies propose a multidimensional Zarit Burden Interview model. This study aims to determine the agreement between unidimensional (UD) and multidimensional (MD) classification of burden, and differences in predictors among identified groups. We studied 165 dyads of dementia patients and primary caregivers. Caregivers were dichotomized into low-burden and high-burden groups based upon: (1) UD score using quartile cutoffs; and (2) MD model via exploratory cluster analysis. We compared UD versus MD 2×2 classification of burden using κ statistics. Caregivers not showing agreement by either definition were classified as "intermediate" burden. We performed binary logistic regression to ascertain differences in predictive factors. The 2 models showed moderate agreement (κ=0.72, P<0.01), yielding 104 low, 20 intermediate (UD "low burden"/MD "high burden"), and 41 high-burden caregivers. Neuropsychiatric symptoms [odds ratio (OR)=1.27, P=0.003], coresidence (OR=6.32, P=0.040), and decreased caregiving hours (OR=0.99, P=0.018) were associated with intermediate burden, whereas neuropsychiatric symptoms (OR=1.21, P=0.001) and adult children caregivers (OR=2.80, P=0.055) were associated with high burden. Our results highlight the differences between UD and MD classification of caregiver burden. Future studies should explore the significance of the noncongruent intermediate group and its predictors.
Lackey, Steven L.
The purpose of this study was to examine the role and relationship of the practice of Christian beliefs and resilience in the context of dementia patient caregivers' lives. The guiding question was "What is the relational nature of the practice of Christian beliefs and resilience in the lived experiences of caregivers of dementia…
Weiss, Jonathan A.; Lunsky, Yona; Gracey, Carolyn; Canrinus, Maaike; Morris, Susan
Background: Strains on the mental health system and inaccessible services for individuals with intellectual disabilities (ID) often force caregivers to bring individuals with ID to the emergency department (ED) when in psychiatric crisis. The purpose of this study was to understand the experience of caregivers and adults with ID and mental health…
Vitaliano, Peter P.; Zhang, Jianping; Young, Heather M.; Caswell, Lisa W.; Scanlan, James M.; Echeverria, Diana
Purpose: Very few studies have examined cognitive decline in caregivers versus noncaregivers, and only 1 study has examined mediators of such decline. We evaluated the relationship between caregiver status and decline on the digit symbol test (DST; a measure of processing speed, attention, cognitive-motor translation, and visual scanning) and…
Van Pelt, David C.; Milbrandt, Eric B; Qin, Li; Weissfeld, Lisa A.; Rotondi, Armando J.; Schulz, Richard; Chelluri, Lakshmipathi; Angus, Derek C.; Michael R. Pinsky
Rationale: Although caregiver burden is well described in chronic illness, few studies have examined burden among caregivers of survivors of critical illness. In existing studies, it is unclear whether the observed burden is a consequence of critical illness or of preexisting patient illness.
The purpose of this study was to identify caregivers' attitudes regarding amounts and types of foods served to Head Start preschoolers using qualitative methods. Researchers conducted 8 focus groups (4 African American; 4 Hispanic) with 33 African American and 29 Hispanic Head Start caregivers. Mode...
Twenty-nine child/caregiver pairs were observed in a public park without adults' knowledge. Interdependence of children's exploration and ability to walk, effect of age on frequency and length of explorations, and time spent by children of different ages in the vicinity of their caregivers are discussed. (Author/RH)
Walker, Alexis J.; And Others
Compared pairs (n=174) of elderly mothers' and their caregiving daughters' perceptions of aid given to the mothers with actual caregiving activities. Results indicated nearly half of the mothers and daughters were accurate in their perceptions of aid given to the mothers; when mothers' perception of aid was inaccurate, mothers overestimated rather…
Singer, George H. S.; Biegel, David E.; Ethridge, Brandy L.
Public policy aimed at supporting the caregiving capacity of families has risen to prominence on the public agenda in the United States. Initiatives at the state and federal levels have created some initial services. Three trends that are pushing the issue of family caregiving to the surface are discussed, including large-scale social,…
Nancy J. Karlin
Full Text Available This study focuses on understanding similarities and differences between non-Hispanic White and Hispanic informal caregivers of those with Alzheimer’s disease. Comparisons take place between caregivers reporting high levels of burden as indicated by the Zarit Burden Inventory. Data suggest similarities and differences between Hispanic (n = 17 and non-Hispanic White (n = 17 caregivers in this study in several areas. Hispanic caregivers indicated fewer sources of income, had less investment money for family member’s treatment, reported caregiving as a greater interference with life’s accomplishments, and indicated a lesser percentage of the total care cost provided by the family member. Non-Hispanic White caregivers reported having completed a higher level of formal education and that organized religion’s importance prior to becoming a caregiver was not quite as important as compared with the Hispanic care provider. With current trends, of demographic and cultural changes, it is crucial to fully understand the changing role and needs of both Hispanic and non-Hispanic White caregivers.
Elnasseh, Aaliah G.; Trujillo, Michael A.; Peralta, Silvina Victoria; Stolfi, Miriam E.; Morelli, Eliana; Perrin, Paul B.
This study examined whether healthier family dynamics were associated with higher personal strengths of resilience, sense of coherence, and optimism among dementia caregivers in Argentina. Caregivers are usually required to assist individuals with dementia, and family members have typically fulfilled that role. Personal strengths such as resilience, sense of coherence, and optimism have been shown to protect caregivers from some of the negative experiences of providing care, though the family-related variables associated with these personal strengths are largely unknown. Hierarchical multiple regressions investigated the extent to which family dynamics variables are associated with each of the caregiver personal strengths after controlling for demographic and caregiver characteristics. A sample of 105 caregivers from Argentina completed a set of questionnaires during a neurologist visit. Family dynamics explained 32% of the variance in resilience and 39% of the variance in sense of coherence. Greater family empathy and decreased family problems were uniquely associated with higher resilience. Greater communication and decreased family problems were uniquely associated with higher sense of coherence. Optimism was not found to be significantly associated with family dynamics. These results suggest that caregiver intervention research focused on the family may help improve caregiver personal strengths in Argentina and other Latin American countries. PMID:27413574
Gómez-Marcos Manuel Á
Full Text Available Abstract Background There are caregivers who see their quality of life (QoL impaired due to the demands of their caregiving tasks, while others manage to adapt and overcome the crises successfully. The influence of the family function in the main caregiver's situation has not been the subject of much evaluation. The aim of this study is to analyse the relationship between the functionality of the family and the QoL of caregivers of dependent relatives. Methods We conducted a cross-sectional study including 153 caregivers. Setting: Two health centers in the city of Salamanca(Spain. Caregiver variables analysed: demographic characteristics, care recipient features; family functionality (Family APGAR-Q and QoL (Ruiz-Baca-Q perceived by the caregiver. Five multiple regressions are performed considering global QoL and each of the four QoL dimensions as dependent variables. The Canonical Correspondence Analysis (CCA was used to study the influence of the family function questionnaire on QoL. Results Family function is the only one of the variables evaluated that presented an association both with global QoL and with each of the four individual dimensions (p Conclusion We find an association between family functionality and the caregiver's QoL. This relation holds for both the global measure of QoL and each of its four individual dimensions.
Elnasseh, Aaliah G; Trujillo, Michael A; Peralta, Silvina Victoria; Stolfi, Miriam E; Morelli, Eliana; Perrin, Paul B; Arango-Lasprilla, Juan Carlos
This study examined whether healthier family dynamics were associated with higher personal strengths of resilience, sense of coherence, and optimism among dementia caregivers in Argentina. Caregivers are usually required to assist individuals with dementia, and family members have typically fulfilled that role. Personal strengths such as resilience, sense of coherence, and optimism have been shown to protect caregivers from some of the negative experiences of providing care, though the family-related variables associated with these personal strengths are largely unknown. Hierarchical multiple regressions investigated the extent to which family dynamics variables are associated with each of the caregiver personal strengths after controlling for demographic and caregiver characteristics. A sample of 105 caregivers from Argentina completed a set of questionnaires during a neurologist visit. Family dynamics explained 32% of the variance in resilience and 39% of the variance in sense of coherence. Greater family empathy and decreased family problems were uniquely associated with higher resilience. Greater communication and decreased family problems were uniquely associated with higher sense of coherence. Optimism was not found to be significantly associated with family dynamics. These results suggest that caregiver intervention research focused on the family may help improve caregiver personal strengths in Argentina and other Latin American countries.
Goodman, Catherine Chase; Pynoos, Jon
Describes telephone network bringing family caregivers of Alzheimer's victims together over telephone in rotating pattern of twosomes. Explains how five caregiving spouses and five adult children were matched and connected over three months. Describes program's 25 telephone-accessed audiotapes that guided networks and provided information on…
Courtenay, Ken; Jokinen, Nancy S.; Strydom, Andre
Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997-2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level…
Parvataneni, Rupa; Polley, Mei-Yin; Freeman, Teresa; Lamborn, Kathleen; Prados, Michael; Butowski, Nicholas; Liu, Raymond; Clarke, Jennifer; Page, Margaretta; Rabbitt, Jane; Fedoroff, Anne; Clow, Emelia; Hsieh, Emily; Kivett, Valerie; Deboer, Rebecca; Chang, Susan
The purpose of this study is to identify the needs of brain tumor patients and their caregivers to provide improved health services to these populations. Two different questionnaires were designed for patients and caregivers. Both questionnaires contained questions pertaining to three realms: disease symptoms/treatment, health care provider, daily living/finances. The caregivers' questionnaires contained an additional domain on emotional needs. Each question was evaluated for the degree of importance and satisfaction. Exploratory analyses determined whether baseline characteristics affect responder importance or satisfaction. Also, areas of high agreement/disagreement in satisfaction between the participating patient-caregiver pairs were identified. Questions for which >50% of the patients and caregivers thought were "very important" but >30% were dissatisfied include: understanding the cause of brain tumors, dealing with patients' lower energy, identifying healthful foods and activities for patients, telephone access to health care providers, information on medical insurance coverage, and support from their employer. In the emotional realm, caregivers identified 9 out of 10 items as important but need further improvement. Areas of high disagreement in satisfaction between participating patient-caregiver pairs include: getting help with household chores (P value = 0.006) and finding time for personal needs (P value needs, emphasizing the importance of providing appropriate medical and psychosocial support for caregivers to cope with emotional difficulties they face during the patients' treatment process.
Milders, Maarten; Bell, Stephen; Lorimer, Angus; MacEwan, Tom; McBain, Alison
Cognitive stimulation (CS) is a psychological intervention for people with dementia aimed at maintaining cognitive functioning. CS provided by caregivers would allow long-term maintenance without greatly increasing demands on health services, but raises questions concerning treatment fidelity and acceptability, which were investigated in this study. Caregivers of home-living people with dementia were trained to provide CS activities to their relative with dementia. Recordings of intervention sessions and analysis of training manuals suggested adequate delivery of the intervention. Dyads continued with the activities after caregiver training had stopped. In addition, presentation of the activities without supervision from a health care professional had no detrimental effect on well-being in the caregiver or the person with dementia. The majority of caregivers indicated that, even though they experienced some burden from doing the activities with their relative, they themselves had also benefited from the intervention and intended to continue with some of the activities.
Grady, Patricia A.; Gullatte, Mary
The National Nursing Research Roundtable (NNRR) meets annually to provide an opportunity for the leaders of nursing organizations with a research mission to discuss and disseminate research findings to improve health outcomes. In 2014, the NNRR addressed the science of caregiving, a topic of increasing importance given that more people are living with chronic conditions and that managing chronic illness is shifting from providers to individuals, their families, and the communities where they live. The NNRR consisted of scientific presentations in which leading researchers discussed the latest advances in caregiving science across the life span and breakout sessions where specific questions were discussed. The questions focused on the policy and practice implications of caregiving science and provided an opportunity for nursing leaders to discuss ways to advance caregiving science. The nursing community is ideally positioned to design and test caregiver health interventions and to implement these interventions in clinical and community settings. PMID:25015405
Williams, A Paul; Peckham, Allie; Watkins, Jillian; Warrick, Natalie; Tam, Tommy; Rudoler, David; Spalding, Karen
This paper, the first in a series of three, sets the stage for two accompanying papers detailing a pair of groundbreaking initiatives to support "at risk" caregivers of high-needs older persons and children in Toronto. Although caregiver burden and stress are often conceptualized primarily as a function of the needs of cared-for persons and the capacity of caregivers, fragmented formal care systems also play a key role. Solutions must take individual-level and system-level factors into account; clarify expectations about what we expect unpaid caregivers to do; redefine the unit of care to include caregivers; and think beyond short-term fixes to mechanisms, such as interdisciplinary teams and integrated care plans, that promote forward planning, accountability, best practices and crisis avoidance.
Zweig, Yael R; Galvin, James E
Lewy body dementia (LBD) is the second most common neurodegenerative dementia in older adults, yet there remains a delay in diagnosis that limits healthcare providers' ability to maximize therapeutic outcomes and enhance patient and caregiver quality of life. The impact of LBD on patients includes limiting the potential exposure to medications that may cause adverse outcomes, and addressing how the disease manifestations, such as autonomic features and behavior, affect quality of life. LBD impact on caregivers has been discussed to a greater degree in the literature, and there is clear evidence of caregiver burden and grief associated with disease manifestations. Other common caregiving concerns, such as access to care, prevention of hospitalization, managing behavior, and reviewing prognosis and nursing home placement, are important to comprehensively address the needs of patients with LBD and their caregivers.
Peter Babatunde Olaitan
Full Text Available Objective: The aim of this paper is to document the practice of photography among clinicians whose daily work depends and is influenced so much by medical photography. Materials and Methods: Questionnaires documenting the bio data, place of practice, and experience of cleft caregivers with clinical photography were distributed. Knowledge of rules guiding clinical photography and adherence to them were also asked. Types of camera used were documented and knowledge of the value of clinical photographs were also inquired. Results: Plastic surgeons constitute the highest proportion of 27 (38.6%, followed by Oral and Maxillofacial surgeons with 14 (20.0%. Twenty one (30.0% of the respondents always, 21 (30.0% often, 12 (17.1% frequently, while 9 respondents sometimes took photographs of their patients. Suggested uses of clinical photographs included training, 52 (74.3%, education, 51 (72.9%, medicolegal, 44 (62.9% and advertisement, 44 (62.9% among others. Twenty two (31.4% did not know that there were standard guidelines for taking clinical photographs. Twenty three (32.9% of them did not seek the consent of the patients before taking clinical photographs. Conclusion: While the practice of clinical photography is high among African cleft caregivers, there is a need for further education on the issues of standard rules and obtaining consent from patients.
Olaitan, Peter Babatunde; Oseni, Ganiyu Oladiran
Objective: The aim of this paper is to document the practice of photography among clinicians whose daily work depends and is influenced so much by medical photography. Materials and Methods: Questionnaires documenting the bio data, place of practice, and experience of cleft caregivers with clinical photography were distributed. Knowledge of rules guiding clinical photography and adherence to them were also asked. Types of camera used were documented and knowledge of the value of clinical photographs were also inquired. Results: Plastic surgeons constitute the highest proportion of 27 (38.6%), followed by Oral and Maxillofacial surgeons with 14 (20.0%). Twenty one (30.0%) of the respondents always, 21 (30.0%) often, 12 (17.1%) frequently, while 9 respondents sometimes took photographs of their patients. Suggested uses of clinical photographs included training, 52 (74.3%), education, 51 (72.9%), medicolegal, 44 (62.9%) and advertisement, 44 (62.9%) among others. Twenty two (31.4%) did not know that there were standard guidelines for taking clinical photographs. Twenty three (32.9%) of them did not seek the consent of the patients before taking clinical photographs. Conclusion: While the practice of clinical photography is high among African cleft caregivers, there is a need for further education on the issues of standard rules and obtaining consent from patients. PMID:22279284
Ryan, Kelly A.; Weldon, Anne; Persad, Carol; Heidebrink, Judith L.; Barbas, Nancy; Giordani, Bruno
Background Caregivers of patients with mild cognitive impairment (MCI) need similar levels of support services as Alzheimer’s disease (AD) caregivers, but it is unclear if this translates to increased caregiver burden. Methods 135 participants and their caregivers (40 MCI, 55 AD and 40 normal controls, NC) completed questionnaires, and the patients were administered neuropsychological tests. Results The MCI caregivers reported significantly more overall caregiving burden than the NC, but less than the AD. They showed similar levels of emotional, physical and social burden as the AD caregivers. Among the MCI caregivers, the neuropsychiatric symptoms and executive functioning of the patients were related to a greater burden, and the caregivers with a greater burden reported lower life satisfaction and social support, and a greater need for support services. Conclusion These results indicate that MCI caregivers are at increased risk for caregiver stress, and they require enhanced assistance and/or education in caring for their loved ones. PMID:23128102
Cornelius, T; Earnshaw, V A; Menino, D; Bogart, L M; Levy, S
Substance use disorders (SUDs) in adolescence have negative long-term health effects, which can be mitigated through successful treatment. Caregivers play a central role in adolescent treatment involvement; however, studies have not examined treatment motivation and pressures to enter treatment in caregiver/adolescent dyads. Research suggests that internally motivated treatment (in contrast to coerced treatment) tends to lead to better outcomes. We used Self-determination theory (SDT) to examine intersecting motivational narratives among caregivers and adolescents in SUD treatment. Relationships between motivation, interpretation of caregiver pressures, adolescent autonomy, and relatedness were also explored. Adolescents in SUD treatment and their caregivers (NDyads=15) were interviewed about treatment experiences. Interviews were coded for treatment motivation, including extrinsic (e.g., motivated by punishment), introjected (e.g., motivated by guilt), and identified/integrated motivation (e.g., seeing a behavior as integral to the self). Internalization of treatment motivation, autonomy support/competence (e.g., caregiver support for adolescent decisions), and relatedness (e.g., acceptance and support) were also coded. Four dyadic categories were identified: agreement that treatment was motivated by the adolescent (intrinsic); agreement that treatment was motivated by the caregiver (extrinsic); agreement that treatment was motivated by both, or a shift towards adolescent control (mixed/transitional); and disagreement (adolescents and caregivers each claimed they motivated treatment; conflicting). Autonomy support and relatedness were most prominent in intrinsic dyads, and least prominent in extrinsic dyads. The mixed/transitional group was also high in autonomy support and relatedness. The extrinsic group characterized caregiver rules as an unwelcome mechanism for behavioral control; caregivers in the other groups saw rules as a way to build adolescent competence
Rusby, Julie C.; Jones, Laura Backen; Crowley, Ryann; Smolkowski, Keith
Home-based child caregivers face unique stressors related to the nature of their work. One hundred and fifty-five home-based child care providers in Oregon, USA, participated in this cross-sectional correlational study. We investigated associations between indicators of caregiver stress and child care working conditions, the quality of caregiver…
Kaizik, Cassandra; Caga, Jashelle; Camino, Julieta; O’Connor, Claire M.; McKinnon, Colleen; Oyebode, Jan R.; Piguet, Olivier; Hodges, John R.; Mioshi, Eneida
The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences. PMID:28106550
von Koch Lena
Full Text Available Abstract Background Little is known about the life satisfaction of the person with stroke combined with their caregiver, i.e. the dyad, despite the fact that life satisfaction is an important rehabilitation outcome. The aim of this study was to describe the dyads combined life satisfaction and to understand this in relationship to the perceived impact of stroke in everyday life and caregiver burden. Methods In this cross-sectional study, the life satisfaction of persons and their informal caregivers was measured in 81 dyads one year post stroke. Their global life satisfaction, measured with LiSat-11, was combined to a dyad score and the dyads were then categorized as satisfied, dissatisfied or discordant. The groups were compared and analyzed regarding levels of caregiver burden, measured with the Caregiver Burden scale, and the perceived impact of stroke in everyday life, measured with the Stroke Impact Scale (SIS. Results The satisfied dyads comprised 40%, dissatisfied 26% and those that were discordant 34%. The satisfied dyads reported a significantly lower impact of the stroke in everyday life compared with the dyads that were not satisfied. As expected, dyads that were not satisfied reported a significantly greater caregiver burden compared with the satisfied dyads. The discordant group was further broken down into a group of dissatisfied and satisfied caregivers. The caregivers that were not satisfied in the discordant group perceived a significantly greater level of caregiver burden compared with the satisfied group. Even caregivers who were satisfied with life but whose care recipients were not satisfied reported caregiver burden. Conclusions Measuring combined life satisfaction provides a unique focus and appears to be a feasible way of attaining the dyads' perspective. The findings suggest that those dyads with a discordant life satisfaction could be vulnerable because of the caregivers' reported caregiver burden. These findings
Full Text Available To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer's disease (AD.We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients' Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers' level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors.A lower level of cognitive function in patients (r = -0.28, p<0.001 and longer hours of caregiving (r = 0.17, p = 0.019 were related to increased caregiver burden. Greater social support (r = -0.23, p<0.001, family function (r = -0.17, p = 0.015 and caregiving experience (r = -0.16, p = 0.012 were related to decreased caregiver burden. Social support (r = 0.16, p = 0.040 and family
This article discusses the identity of HIV/AIDS caregivers as constructed by a group of HIV/AIDS caregivers at a non-profit organisation in South Africa. During a 12-month period data were collected through interviews with the organisation's staff and volunteers. Using discourse analysis, the study identified a caregiver identity constructed by participants. This caregiving identity acts as a double-edged sword: while the rewards of caregiving act as a buffer against stressful experiences, the prescriptive nature of the caregiver identity is taxing, and may explain burnout among HIV/AIDS caregivers. The study concludes that for support systems for HIV/AIDS caregivers to be effective, the social culture and identity of HIV/AIDS caregivers must be considered.
Skalla, Karen A; Smith, Ellen M Lavoie; Li, Zhongze; Gates, Charlene
This pilot study describes the multidimensional (physical, psychological, social, and spiritual) needs of caregivers of cancer survivors. A regional comprehensive cancer center and nine community-based rural and urban cancer clinics in New Hampshire assembled a convenience sample. Patients with cancer completed an online survey, the cancer survivor Web-based needs assessment survey (CS-WEBS), to identify needs and desire for intervention. Patients then identified a caregiver who was recruited to complete a caregiver version of the CS-WEBS. Caregivers reported challenges within all four domains of the survivorship model. The highest reported physical symptoms were fatigue, insomnia, and weight gain. Social symptoms included financial issues. Although visiting nurse services were the most commonly used resource, many caregivers used no supportive services. The most common caregiver task was listening and talking. Caregivers frequently experienced fatigue, anxiety, and insomnia. Exploring effective ways to alleviate their symptom burden should be a priority. Local and national attention should be directed toward easing the financial burden of caring for a patient with cancer.
Øderud, Tone; Landmark, Bjørg; Eriksen, Sissel; Fossberg, Anne Berit; Aketun, Sigrid; Omland, May; Hem, Karl-Gerhard; Østensen, Elisabeth; Ausen, Dag
The aim of the study is to generate knowledge on the use of Global Positioning Systems (GPS) to support autonomy and independence for persons with dementia. By studying a larger cohort of persons with dementia (n=208) and their caregivers, this study provides essential knowledge for planning and implementing GPS technology as a part of public health care services. Commercially available GPS technology was provided to the cohort of 208 persons with dementia from nineteen different Norwegian municipalities. The participants used GPS when performing outdoor activities as part of their daily life during a period of time between 2012 and 2014. Their family caregivers were instructed on how to use the GPS technology for locating the participants. The study documents that using GPS for locating persons with dementia provide increased safety for the person with dementia, their family caregivers and their professional caregivers. Furthermore the results confirm that by using GPS, persons with dementia may maintain their autonomy, enjoy their freedom and continue their outdoor activities despite the progression of the disease. Preconditions for successful implementation are that health professionals are trained to assess the participant's needs, that ethical dilemmas are considered, that caregivers have adequate knowledge about using the technology and that procedures and routines for administrating the GPS and locating persons with dementia are established. Early intervention and close collaboration between persons with dementia, family caregivers and professional caregivers are important for successful implementation of GPS in public health care.
Holtslander, Lorraine F
Deaths from cancer will continue to rise with an increasing and aging population. Family caregivers of patients with cancer will face loss, grief, and bereavement as a result. As mandated by cancer and palliative care clinical practice guidelines, support for family caregivers continues through the processes of grief and bereavement to facilitate a positive transition through loss. To provide evidence-based nursing with this population, an analysis of their context of care was undertaken. Key health policies, characteristics of the healthcare delivery system, and the results of research with bereaved palliative caregivers are described. A model of effectiveness, efficiency, and equity is used to examine the situation of bereaved caregivers and to suggest research questions to fill the gaps in what is known about their needs and experience. Bereaved caregivers are at high risk for many distressing symptoms, including depression and sleeplessness, related to a range of complex variables, such as age, gender, social support, resources, and their experiences during caregiving. Current systems of support have not been adequate to meet the needs of this population and very little is known about the caregivers' quality of life, well-being, and health outcomes or how best to provide compassionate and effective nursing care.
Wittenberg-Lyles, Elaine; Oliver, Debra Parker; Demiris, George; Washington, Karla T; Regehr, Kelly; Wilder, Heidi M
This article reports findings from a pilot study that enabled family caregivers to use videophone technology to participate in hospice interdisciplinary team meetings. The goal of the study was to ascertain which issues were important to caregivers and the hospice team. A qualitative content analysis of video-recorded team meetings between team members and caregivers was conducted. In a sample of 12 caregivers in 36 discussions, caregivers asked a total of 137 questions, with the majority being Yes/No questions (45.1%), primarily used to seek clarification (19.6%). Hospice staff asked 396 questions, with the majority consisting of Yes/No questions (66.5%), mainly used to ask about the overall condition of the patient (22.2%). Data from this study suggest that when given the opportunity to participate in hospice team meetings, caregivers will ask questions of hospice staff. In addition, in light of prior research, this study's findings suggest that caregivers may have questions that go unaddressed, specifically regarding pain and medication.
Wuest, Judith; Hodgins, Marilyn J
Caregiving by family members, particularly women, is a societal expectation that is intensifying in the context of an aging population and health care restructuring. Our program of caregiving research spans two decades, moving from inductive theory development using grounded theory methods to deductive theory testing. In this article, we reflect on the serendipitous development of this program of research methodologically and conceptually. We summarize the key conceptual contributions that the program has made to caregiving knowledge, particularly with respect to the past relationship between care recipient and caregiver, obligation to care, caregiver agency, and relationships between caregivers and the health care system.
Koenig, Kelly N.; Steiner, Victoria; Pierce, Linda L.
This study compared information needs of caregivers of persons with dementia with caregivers of those who received rehabilitation treatment. Caregivers were provided a 48-item survey and asked to choose their top ten information needs. Dementia caregivers' (n = 33) top needs were dealing with forgetfulness/confusion (91%) and repeating…
Lund, Line; Ross, Lone; Grønvold, Mogens
To develop a questionnaire for cancer patients' informal caregivers, measuring the caregiving tasks and consequences, and the caregivers' needs with a main focus on the interaction with the health care professionals. Such an instrument is needed to evaluate the efforts directed towards caregivers...
Enright, Robert B., Jr.
Surveyed 233 family caregivers for brain-impaired adults. Spousal caregivers (both husbands and wives) devoted much time to caregiving. Most caregivers received little assistance from other family members and friends, but husbands received more than others. Employed spouses received more paid help than unemployed spouses; employment did not affect…
Villagrana, Margarita; Palinkas, Lawrence A.
The purpose of this study was to examine the three most common types of caregivers in the child welfare system (birth parents, relative caregivers, and foster parents), an active child welfare case, caregivers' endorsement of barriers to mental health services and mental health service use by caregivers for the children under their care. The…
Grosse, Scott D.; Flores, Alina L.; Ouyang, Lijing; Robbins, James M.; Tilford, John M.
The well-being of caregivers of children with spina bifida and other conditions is an important topic. We interviewed the primary caregivers of 98 children aged 0-17 years with spina bifida sampled from a population-based birth defects registry in Arkansas and the caregivers of 49 unaffected children. Measures of caregiver well-being were compared…
Honea, Norissa J; Brintnall, Ruthann; Given, Barbara; Sherwood, Paula; Colao, Deirdre B; Somers, Susan C; Northouse, Laurel L
Family caregiving often is associated with multiple rewards, yet the diversity and intensity of caregiving roles also can result in caregiver strain and burden. Using interventions to reduce the strain and burden on caregivers of patients with cancer is an important role nurses play. This article is a critical review and synthesis of the evidence regarding assessment tools and interventions aimed at reducing caregiver strain and burden in the oncology population. Although the striking finding is the limited number of interventions targeted toward oncology caregivers, suggestions from the literature are offered to support and promote healthy outcomes for family caregivers.
Anngela-Cole, Linda; Hilton, Jeanne M
This study evaluated cultural differences in attitudes toward caregiving and the stress levels of family caregivers. Participants included 98 Japanese American and 86 Caucasian American family caregivers caring for frail elders. Analyses using MANOVA and multiple regression analyses revealed that the Caucasian caregivers had more positive attitudes and provided more hours of care than the Japanese caregivers but that both groups had elevated levels of caregiver stress. The stress that family caregivers currently experience could lead to a future generation of care recipients who enter old age in worse condition than their predecessors. Professionals need to work together to develop culturally appropriate, evidence-based interventions to address this issue.
Holroyd-Leduc, Jayna M; McMillan, Jacqueline; Jette, Nathalie; Brémault-Phillips, Suzette C; Duggleby, Wendy; Hanson, Heather M; Parmar, Jasneet
Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.
Nielsen, Mette Kjaergaard; Neergaard, Mette Asbjoern; Jensen, Anders Bonde;
and depressive symptoms, caregiver burden, preparedness for death, communication about dying and socio-economic factors predicted complicated grief and post-loss depressive symptoms. METHODS: We conducted a population-based, prospective Danish survey of caregivers. Questionnaires for their closest caregiver were...... (BDI-II) and predictive factors were analyzed with mutually adjusted multivariable logistic regression models. RESULTS: At six-month follow-up, 7.6% reported complicated grief and 12.1% reported post-loss depressive symptoms, whereas the levels of grief and depressive symptoms were higher pre......CONTEXT: Complicated grief and depressive symptoms in bereaved caregivers have been associated with female gender, spousal relation and pre-loss psychological distress, but population-based, prospective studies are scarce. OBJECTIVES: We aimed to investigate whether severe pre-loss grief...
An article about an educational program at the City of Hope Cancer Center intended to provide health professionals with the tools and information needed to help family caregivers care for themselves and their loved ones with cancer.
Matthews, Judith T; Campbell, Grace B; Hunsaker, Amanda E; Klinger, Julie; Mecca, Laurel Person; Hu, Lu; Hostein, Sally; Lingler, Jennifer H
Family caregivers of individuals with dementia typically have limited opportunity during brief clinical encounters to describe the dementia-related behaviors and interactions they find difficult to handle. Lack of objective data depicting the nature, intensity, and impact of these manifestations of the underlying disease further constrains the extent to which strategies recommended by nurses or other health care providers can be tailored to the situation. The current article describes a prototype wearable camera system used to gather image and voice data from the caregiver's perspective in a pilot feasibility intervention study conducted with 18 caregiving dyads. Several scenarios are presented that include salient events (i.e., behaviors or interactions deemed difficult by the caregiver or identified as concerning by the research team during screening) captured in the resulting video. The current authors anticipate future wearable camera systems and software will automate screening for salient events, providing new tools for assessment and intervention by nurses.
van Weert, J.C.M.; van Dulmen, A.M.; Bensing, J.M.; Visser, A.M.
Background: Dementia among nursing home residents is often accompanied by high care dependency and behavioral disturbances, possibly resulting in increased workload, increased stress reactions and decreased job satisfaction. This might result in negative caregiver behaviour. Until now, little is kno
... Products For Consumers Home For Consumers Consumer Updates Vaccines for Children: Information for Parents and Caregivers Share Tweet Linkedin ... to a healthy start. "Parents should know that vaccines protect children from many serious illnesses from infectious diseases. The ...
Koenig, Harold G; Nelson, Bruce; Shaw, Sally F; Saxena, Salil; Cohen, Harvey Jay
Telomere length (TL) is an indicator of cellular aging associated with longevity and psychosocial stress. We examine here the relationship between religious involvement and TL in 251 stressed female family caregivers recruited into a 2-site study. Religious involvement, perceived stress, caregiver burden, depressive symptoms, and social support were measured and correlated with TL in whole blood leukocytes. Results indicated a U-shaped relationship between religiosity and TL. Those scoring in the lowest 10% on religiosity tended to have the longest telomeres (5743 bp ± 367 vs. 5595 ± 383, p = 0.069). However, among the 90% of caregivers who were at least somewhat religious, religiosity was significantly and positively related to TL after controlling for covariates (B = 1.74, SE = 0.82, p = 0.034). Whereas nonreligious caregivers have relatively long telomeres, we found a positive relationship between religiosity and TL among those who are at least somewhat religious.
... use stress-reduction techniques, e.g. meditation, prayer, yoga, Tai Chi. Attend to your own healthcare needs. ... as A Risk for Mortality: The Caregiver Health Effects Study. JAMA, December 15, 1999 - Vol. 282, No. ...
... https://medlineplus.gov/news/fullstory_159925.html Latest Zika Puzzle: How U.S. Patient Infected Caregiver Officials say ... MONDAY, July 18, 2016 (HealthDay News) -- The mysterious Zika virus continues to surprise health scientists. On Monday, ...
Nielsen, Mette Kjærgaard
Objective Family caregivers of terminally ill patients are in a vulnerable position, and previous studies show that bereaved caregivers are at risk of psychological distress. Pre-loss grief symptoms seem to predict post-loss psychological distress, while preparedness for a looming loss tends...... to decrease distress. The aim of this nation-wide study was to investigate the association of both anticipatory grief symptoms and preparedness with psychological distress in bereaved family caregivers. Methods A list of all adult patients in Denmark receiving drug reimbursement for terminal illness...... months after the loss. The baseline questionnaire included a pre-loss version of the Prolonged Grief-13 and one question regarding caregiver preparedness, while the follow-up questionnaire contained the Prolonged Grief-13 and Beck’s Depression Inventory II. Results Of the contacted 9,512 patients 3...
Jansen, Jens Einar; Lysaker, Paul H.; Harder, Susanne
Objectives While caregivers of persons with first-episode psychosis often report a range of negative experiences, little is known about what psychological factors are involved. The aim of this study was to examine how caregivers' general wellbeing, emotional overinvolvement and metacognition...... influenced their reports of both positive and negative caregiving experiences. Design A prospective consecutive cross-sectional study. Methods Forty caregivers of patients with first-episode psychosis were interviewed using semi-structured interview and questionnaires. Results Greater levels of distress...... metacognitive capacity does not necessarily alleviate the suffering and distress, which is a healthy and normal reaction to having a close one suffering from psychosis. But it might help broaden the perspective, allowing for both negative and positive experiences. Clinical implications in terms of expanding...
Rathier, Lucille A; Davis, Jennifer Duncan; Papandonatos, George D; Grover, Christine; Tremont, Geoffrey
The degree of depression experienced by caregivers of individuals with dementia was examined in relation to religious coping strategies, religious practice, and spirituality in the framework of the stress and coping model. Caregivers of 191 persons with dementia completed the Religious Coping Scale, self-report measures of religious practices and spirituality, burden, and depression. There was no evidence that any religious coping strategy or religious practice moderated the relationship between caregiving stress and depression. Certain types of religious coping strategies had a direct effect on depression. Higher levels of religious coping working with God were associated with decreased depression, whereas higher levels of religious coping working through God were associated with increased depression. Higher burden, lower overall caregiver health rating, and worse reactions to memory and behavior problems were associated with higher levels of depression. Frequency of prayer and the importance of spirituality were weakly associated with lower levels of depression.
Silveira Maria J
Full Text Available Abstract Background Previous studies have found that cancer patients undergoing chemotherapy can effectively manage their own symptoms when given tailored advice. This approach, however, may challenge patients with poor performance status and/or emotional distress. Our goal is to test an automated intervention that engages a friend or family member to support a patient through chemotherapy. Methods/Design We describe the design and rationale of a randomized, controlled trial to assess the efficacy of 10 weeks of web-based caregiver alerts and tailored advice for helping a patient manage symptoms related to chemotherapy. The study aims to test the primary hypothesis that patients whose caregivers receive alerts and tailored advice will report less frequent and less severe symptoms at 10 and 14 weeks when compared to patients in the control arm; similarly, they will report better physical function, fewer outpatient visits and hospitalizations related to symptoms, and greater adherence to chemotherapy. 300 patients with solid tumors undergoing chemotherapy at two Veteran Administration oncology clinics reporting any symptom at a severity of ≥4 and a willing informal caregiver will be assigned to either 10 weeks of automated telephonic symptom assessment (ATSA alone, or 10 weeks of ATSA plus web-based notification of symptom severity and problem solving advice to their chosen caregiver. Patients and caregivers will be surveyed at intake, 10 weeks and 14 weeks. Both groups will receive standard oncology, hospice, and palliative care. Discussion Patients undergoing chemotherapy experience many symptoms that they may be able to manage with the support of an activated caregiver. This intervention uses readily available technology to improve patient caregiver communication about symptoms and caregiver knowledge of symptom management. If successful, it could substantially improve the quality of life of veterans and their families during the stresses of
Fernandes, Ritabelle; Osarch, Sylvia; Bell, Christina L; Flynn, Bret W; Nguyen, Lam V; Abad, Maricel J; Wen, Aida B; Masaki, Kamal H
Aging has been an important population trend of the twentieth century, with most elderly people living in developing countries. Little has been published on the healthcare needs of elderly in the Pacific Islands. The Pacific Islands Geriatric Education Center, at the University of Hawaii, has a mission to promote training in geriatric education in the Pacific Islands to improve healthcare to the elderly. The aim of this project was to develop and test a family caregiver training program for Palau and was achieved in two phases: (1) assessing needs by interviewing key informants and surveying elders and (2) evaluating the caregiver training program that was designed based on findings from the assessment. The Ecological Systems Theory provided the theoretical framework for this study. The needs assessment identified training and education of family caregivers as a top priority, with the Palauan culture of family caring for seniors presently threatened by caregiver burnout. Nearly all of the long-term care in Palau is provided by families, and elders have high prevalence of geriatric syndromes. A family caregiver train-the-trainer workshop was subsequently conducted in February 2011. Forty-four trainers, including 12 from other Pacific Islands, attended the workshop. To assess changes in knowledge and confidence to teach, we compared scores on pre- and post-questionnaires using paired t tests. The train-the-trainer workshop resulted in significantly improved self-assessed competence and confidence to teach in all geriatric syndromes, including dealing with difficult behaviors, gait and transfer training, caregiver stress relief, and resources for caregivers (p < 0.0001). This successful intervention identified geriatric care needs in Palau and successfully trained family caregivers to meet these needs, and may be used as a model for similar interventions in other Pacific Islands.
Recognition, assessment, education, support, and research of young caregivers is yet to be well established throughout the United States. Studies show that as a result of family caregiving, employees miss work, arrive late, have telephone interruptions, and pass up promotions. Education is essentially the work-life of a student. Research among 12,681 public school students in Palm Beach County, Florida, shows that more than 1 in 2 middle and high school youth (6,210) have the dual role of young caregiver and student; one third of all students (67.1% of young caregivers) miss school/after school activities, do not complete homework, and/or are interrupted in their studying-their work-life. As demonstrated in the United Kingdom, assessment, education, and support of young caregivers in school and in the community can improve education outcomes. Proactive school nurses have the opportunity to identify, assess, and promote the well-being and academic success of U.S. student-caregivers.
Antonio M. Vázquez Merino
Full Text Available The Spanish law of Promoting the Personal Autonomy and Attention to people in dependence situation (39/2006 recognizes the enjoyment of assistance to its beneficiaries. General Objective: Determinate the degree of perceived social support in caregivers of persons receiving benefits established by the law. Specific Objectives: To establish the socio-sanitary profile of patients and caregivers and to know, on the basis of the degree of dependency recognized, the features catalogue offered and chosen by our patients. Methodology: descriptive cross-sectional study. Study population: 98 patient-caregiver pairs belonging to Isla Chica’s Health Center (Huelva. Results: The patient profile was a polymedicated woman aged around 74 years old, mainly with self-care deficits and a physical mobility impairment. The caregiver profile was a woman aged around 58 years old, who was taking care of her mother for two years. She showed arterial hypertension, adaptation disorders and osteoarticular diseases. 67.4% of the caregivers receive little total support. Discussion: The physical and mental efforts these dependent caregivers are subjected to has a negative influence on the perception of social support, despite the benefits granted.
Nielsen, Mette Strange; Jørgensen, Frances
The purpose of this study is to contribute to an understanding on how home health caregivers experience engagement in their work, and specifically, how aspects of home healthcare work create meaning associated with employee engagement. Although much research on engagement has been conducted, little has addressed how individual differences such as worker orientation influence engagement, or how engagement is experienced within a caregiving context. The study is based on a qualitative study in two home homecare organisations in Denmark using a think-aloud data technique, interviews and observations. The analysis suggests caregivers experience meaning in three relatively distinct ways, depending on their work orientation. Specifically, the nature of engagement varies across caregivers oriented towards being 'nurturers', 'professionals', or 'workers', and the sources of engagement differ for each of these types of caregivers. The article contributes by (i) advancing our theoretical understanding of employee engagement by emphasising meaning creation and (ii) identifying factors that influence meaning creation and engagement of home health caregivers, which should consequently affect the quality of services provided home healthcare patients.
Cardoso, Lucilene; Vieira, Mariana Verderoce; Ricci, Maira Aparecida Malagutti; Mazza, Rafael Severio
A systematic literature review was performed regarding the burden on mental health caregivers. The studies were selected from the Virtual Health Library - Biblioteca Virtual de Saúde (BVS), using the keyword caregiver burden. The main criteria for this study were: full-text articles published between 2000 and 2010, in Portuguese, English or Spanish; indexed on the BVS databases; which investigated the burden of mental health caregivers, and had caregivers as the main subject. The analysis was performed considering the following: title, year of publication, objectives, methodological approach, instruments and main results. The analysis of 114 full-text articles showed the predominant objectives were the burden on informal caregivers and the validation of psychometric scales, particularly the Zarit Scale. Some studies showed an association between high levels of burden, feelings of guilt and depressive symptoms. On the other hand, psycho-educational interventions were indicated as having a positive impact. This theme has a growing scientific interest and there is a need for deeper studies addressing formal caregivers.
Sinha, Dr Samir K
While it is anticipated that healthcare systems around the world will continue to rely heavily on family members and friends to provide unpaid care especially to meet the needs of our aging population, current assumptions and issues around caregivers need to be challenged and addressed if we are to expect their future support. This paper builds on Williams et al's assertion that many current assumptions and issues around caregivers need to be challenged and addressed if we are to expect their future support. Indeed, with the pool of available caregivers expected to actually shrink in the future, this paper therefore examines four key policy issues in greater depth that we can address to enable individuals to age in place and others to maintain and take on caregiving roles. Through the establishment of policies that support robust and longterm capacity planning; make clear what care recipients and caregivers can expect to receive in the form of government supports; appreciate the increasing diversity that is occurring among those taking on caregiving roles and those requiring care; and recognize the need to invest in strategies that combat social isolation, we may not only improve our future health and well-being but ensure we are also enabled to care for ourselves as we age.
Miranda, Darien; Favela, Jesus; Ibarra, Catalina; Cruz, Netzahualcoyotl
Caring for people with dementia imposes significant stress on family members and caregivers. Often, these informal caregivers have no coping strategy to deal with these behaviors. Anxiety and stress episodes are often triggered by problematic behaviors exhibited by the person who suffers from dementia. Detecting these behaviors could help them in dealing with them and reduce caregiver burden. However, work on anxiety detection using physiological signals has mostly been done under controlled conditions. In this paper we describe an experiment aimed at inducing anxiety among caregivers of people with dementia under naturalistic conditions. We report an experiment, using the naturalistic enactment technique, in which 10 subjects were asked to care for an older adult who acts as if she experiences dementia. We record physiological signals from the participants (GSR, HR, EEG) during the sessions that lasted for approximately 30 min. We explain how we obtained ground truth from self-report and observation data. We conducted two different tests using the Support Vector Machine technique. We obtained an average precision of 77.8 % and 38.1 % recall when classifying two different possible states: "Anxious" and "Not anxious". Analysis of the data provides evidence that the experiment elicits state anxiety and that it can be detected using wearable sensors. Furthermore, if episodes of problematic behaviors can also be detected, the recognition of anxiety in the caregiver can be improved, leading to the enactment of appropriate interventions to help caregivers cope with anxiety episodes.
Heitzinger, Kristen; Vélez, Juan Carlos; Parra, Sonia G.; Barbosa, Clarita; Fitzpatrick, Annette L.
Background We aimed to identify risk factors for childhood overweight and obesity and the accuracy of caregivers’ perceptions of their child’s nutritional status in the Magallanes region, Patagonia, Chile. Methods Heights and weights of children attending day care centers and elementary schools were collected and caregivers completed questionnaires regarding their child’s health and behavior. The child’s nutritional status was diagnosed using the 2006 WHO Child Growth Standards (for children under age 6) and the CDC 2000 Growth Charts (for children age 6 and older). Logistic regression was used to evaluate factors related to childhood overweight/obesity and weight underestimation by caregivers of overweight or obese children. Results Of the 795 children included in the study, 247 (31.1%) were overweight and 223 (28.1%) were obese. Risk factors for overweight/obesity included younger age and being perceived to eat more than normal by the caregiver. Caregivers were less likely to underestimate their child’s weight if the child was older or if the caregiver believed the child ate more than a normal amount. Conclusions There is a high prevalence of overweight and obesity among children in Magallanes and the majority of caregivers underestimate the extent of the problem in their children. PMID:24548582
Geurtsen, G.J.; Meijer, R.; Heugten, C.M. van; Martina, J.D.; Geurts, A.C.H.
OBJECTIVE: To examine the psychometric properties (internal consistency, discriminant validity, and responsiveness) of the Involvement Evaluation Questionnaire for Brain Injury measuring emotional burden in caregivers of patients with chronic acquired brain injury. DESIGN: Inception cohort study. SU
Fernanda Rochelly do Nascimento Mota
Full Text Available This study aimed to carry out the cross-cultural adaptation of the Caregiver Reaction Assessment CRA for use in Brazil with informal caregivers of dependent elderly METHOD A methodological study, of five steps: initial translation, synthesis of translations, retro-translation, evaluation by a judge committee and a pre-test, with 30 informal caregivers of older persons in Fortaleza, Brazil. Content validity was assessed by five experts in gerontology and geriatrics. The cross-cultural adaptation was rigorously conducted, allowing for inferring credibility. RESULTS The Brazilian version of the CRA had a simple and fast application (ten minutes, easily understood by the target audience. It is semantically, idiomatically, experimentally and conceptually equivalent to the original version, with valid content to assess the burden of informal caregivers for the elderly (Content Validity Index = 0.883. CONCLUSION It is necessary that other psychometric properties of validity and reliability are tested before using in care practice and research.
van Campen, Cretien; de Boer, Alice H; Iedema, Jurjen
Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.
Di Rosa, Mirko; Barbabella, Francesco; Barbini, Norma; Chiatti, Carlos
Introduction. Elder abuse is often a hidden phenomenon and, in many cases, screening practices are difficult to implement among older people with dementia. The Caregiver Abuse Screen (CASE) is a useful tool which is administered to family caregivers for detecting their potential abusive behavior. Objectives. To validate the Italian version of the CASE tool in the context of family caregiving of older people with Alzheimer's disease (AD) and to identify risk factors for elder abuse in Italy. Methods. The CASE test was administered to 438 caregivers, recruited in the Up-Tech study. Validity and reliability were evaluated using Spearman's correlation coefficients, principal-component analysis, and Cronbach's alphas. The association between the CASE and other variables potentially associated with elder abuse was also analyzed. Results. The factor analysis suggested the presence of a single factor, with a strong internal consistency (Cronbach's alpha = 0.86). CASE score was strongly correlated with well-known risk factors of abuse. At multivariate level, main factors associated with CASE total score were caregiver burden and AD-related behavioral disturbances. Conclusions. The Italian version of the CASE is a reliable and consistent screening tool for tackling the risk of being or becoming perpetrators of abuse by family caregivers of people with AD. PMID:28265571
Gabor, Anne M; Fritz, Jennifer N; Roath, Christopher T; Rothe, Brittany R; Gourley, Denise A
Social validity of behavioral interventions typically is assessed with indirect methods or by determining preferences of the individuals who receive treatment, and direct observation of caregiver preference rarely is described. In this study, preferences of 5 caregivers were determined via a concurrent-chains procedure. Caregivers were neurotypical, and children had been diagnosed with developmental disabilities and engaged in problem behavior maintained by positive reinforcement. Caregivers were taught to implement noncontingent reinforcement (NCR), differential reinforcement of alternative behavior (DRA), and differential reinforcement of other behavior (DRO), and the caregivers selected interventions to implement during sessions with the child after they had demonstrated proficiency in implementing the interventions. Three caregivers preferred DRA, 1 caregiver preferred differential reinforcement procedures, and 1 caregiver did not exhibit a preference. Direct observation of implementation in concurrent-chains procedures may allow the identification of interventions that are implemented with sufficient integrity and preferred by caregivers.
Christian J. Hendriksz MD
Full Text Available This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with family and friends, physical and mental health, and employment status and income was evaluated. Caregiver burden increased with disease progression. Adult patients always using a wheelchair required substantially more caregiving time and complete assistance with a larger proportion of daily activities than more mobile patients. In children, this was less apparent. Caregivers suffered physically and emotionally and their family and social life and financial situation were considerably impacted. Improvements in patient mobility may substantially reduce the level of caregiver support and the burden of caregiving.
Mioshi, Eneida; Foxe, David; Leslie, Felicity; Savage, Sharon; Hsieh, Sharpley; Miller, Laurie; Hodges, John R; Piguet, Olivier
Caregiver burden is greater in frontotemporal dementia (FTD) than in Alzheimer disease (AD). However, little is known of the impact of the 3 main clinical variants of FTD- behavioral-variant frontotemporal dementia (bvFTD), semantic dementia (SemDem), and progressive nonfluent aphasia (PNFA)-or the role of disease severity in caregiver burden. The Zarit Burden Inventory was used to measure caregiver burden of bvFTD (n=17), SemDem (n=20), PNFA (n=20), and AD (n=19) patients. Symptom duration, caregiver age, and relationship type were matched across groups. Moreover, a number of caregiver (mood, social network) and patient variables (functional disability, behavioral changes, relationship with caregiver, and dementia stage) were addressed to investigate their impact on caregiver burden. Caregivers of bvFTD patients reported the highest burden, whereas SemDem and PNFA caregivers reported burden similar to AD. A regression analysis revealed that caregiver burden in FTD, regardless of subtype, was explained by a model combining disease staging, relationship changes, and caregiver depression. Burden increased with disease severity in FTD. This study is the first to show that caregivers of SemDem, PNFA, and AD patients show similar burden, while confirming that bvFTD caregivers show higher burden than AD caregivers. More importantly, this study demonstrates that burden worsens with disease progression in FTD.
Nahm, Eun-Shim; Orwig, Denise; Resnick, Barbara; Magaziner, Jay; Bellantoni, Michele; Sterling, Robert
Hip fracture is a significant health problem for older adults and generally requires surgery followed by intensive rehabilitation. Informal caregivers (CGs) can provide vital assistance to older adults recovering from hip fracture. Caregiving is a dyadic process that affects both CGs and care recipients (CRs). In a feasibility study, we assessed the effects of using a theory-based online hip fracture resource program for CGs on both CGs and CRs. In this article, we discuss our recruitment process and the lessons learned. Participants were recruited from six acute hospitals, and CGs used the online resource program for 8 weeks. A total of 256 hip fracture patients were screened, and 164 CRs were ineligible. CG screening was initiated when CRs were determined to be eligible. Among 41 eligible dyads, 36 dyads were recruited. Several challenges to the recruitment of these dyads for online studies were identified, including a low number of eligible dyads in certain hospitals and difficulty recruiting both the CR and the CG during the short hospital stay. Field nurses often had to make multiple trips to the hospital to meet with both the CR and the CG. Thus, when a subject unit is a dyad recruited from acute settings, the resources required for the recruitment may be more than doubled. These challenges could be successfully alleviated with careful planning, competent field staff members, collaboration with hospital staff members, and efficient field operations.
Objective To evaluate effects of caregiver's education program on their satisfaction, as well as patient functional recovery, performed in addition to daily conventional rehabilitation treatment. Methods Three hundred eleven subjects diagnosed with first-onset stroke and transferred to the Department of Physical Medicine and Rehabilitation of Inha University Hospital were surveyed. In 2015, caregivers attended an education program for acute and subacute stroke patients. Patients who received an additional rehabilitation therapy were assigned to the experimental group (n=81), whereas the control group (n=100) consisted of transfer cases in 2014 with only conventional treatment. The experimental group was classified by severity using the Korean version of the National Institutes of Health Stroke Scale (K-NIHSS), which was administered to all 181 subjects, in addition to, the Korean version of the Mini Mental Status Examination (K-MMSE), a Modified Barthel Index (K-MBI), and the Berg Balance Scale (K-BBS). Caregiver satisfaction and burden before and after education programs were assessed using the Canadian Occupational Performance Measure (COPM), as well as family burden and caregiver burnout scales. Results No significant intergroup difference was observed between initial K-NIHSS, K-MMSE, K-BBS, K-MBI scores, and times from admission to transfer. Those with moderate or severe strokes under the experimental condition showed a more significant improvement than the control group as determined by the K-NIHSS and K-BBS, as well as tendential K-MMSE and K-MBI score increases. Satisfaction was significantly greater for family members and formal caregivers of patients with strokes of moderate severity in the experimental group. Conclusion The caregiver's education program for stroke subjects had a positive outcome on patients' functional improvement and caregiver satisfaction. The authors believe that the additional rehabilitation therapy with the education program aids
Florence M. Weierbach
Full Text Available Family members who provide care to their loved ones experience changes in their own health. The caregiver health model (CGHM is a new model that identifies health holistically and identifies four determinant(s that contribute to the health status of the family caregiver. The purpose is to introduce the CGHM: Hypothesis 1: the determinants of health in the CGHM contribute to the health of the Caregiver, Hypothesis 2: the determinants of health contribute to changes in the caregivers’ health at 8 and 16 weeks, and Hypothesis 3: a change in health occurs from baseline to 8 and 16 weeks. Methods: A descriptive, longitudinal design used three data collection points and five survey instruments. Community recruitment (N = 90 occurred through word of mouth and newspapers. Inclusion criteria consisted of being a family caregiver, living in a rural residence, and providing care to elders with necessary activities of daily living (ADLs and/or instrumental ADLs (IADLs. Following a participant generated phone call to provide consent, caregivers received an initial study packet, additional packets were sent upon return of the previous packet. Analysis for the three hypotheses included multiple backwards stepwise linear regression, generalized estimating equations (GEE, and analysis of variance (ANOVA α = 0.05. Results: A significant decrease in mental (p < 0.01 but not physical health at 8 weeks (p = 0.38 and 16 weeks (p = 0.29 occurred over time. Two determinants displayed significant (p < 0.05 or less changes in mental and/or physical health at one or more time points. Study limitations include caregiver entry at varying times and self-report of elder nursing needs and medical conditions. Conclusions: Findings support two of the four determinants contributing to caregiver health.
Soliman, Hussein H; Almotgly, Manal M Abd
Caring for individuals with AIDS in developing countries represents a major crisis to families and natural caregivers. This study presents the psychosocial profiles of people with AIDS and their caregivers in Egypt to assess the effects of HIV/AIDS on patients, their caregivers, and the factors that influence caregiving and support. Various stressors and challenges for patients as well as hardships the caregiver faces were explored. The literature documents difficulties such as inadequate health care services, lack of resources, and stigma that patients experience in developing countries. Findings indicate an association between the psychosocial effects of AIDS on patients and their caregivers.
Full Text Available Abstract Background Support groups have proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors that influence utilisation or quality expectations of family caregivers. These questions are addressed in the following paper. Methods The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Qualitative and quantitative data from 404 caregivers were analysed using content analysis and binary logistic regression analysis. Results The only significant predictor for utilisation is assessing how helpful support groups are for the individual care situation. Family caregivers all agree that psycho-educative orientation is a priority requirement. Conclusions In order to increase the rate of utilisation, family caregivers must be convinced of the relevant advantages of using support groups. Support groups which offer an exchange of experiences, open discussion, information and advice meet the requirements of family caregivers.
Marina Picazzio Perez Batista
Full Text Available OBJECTIVE To understand the job function of caregivers of older adults and contribute to the debate on the consolidation of this professional practice. METHODOLOGICAL PROCEDURES This is a descriptive, qualitative, and exploratory study. Four focal group sessions were performed in 2011 with 11 elderly companions, formal caregivers of older adults in the Programa Acompanhante de Idosos (Program for Caregivers of Older Adults, Sao Paulo, SP, Southeastern Brazil. These sessions, guided by a semi-structured script, were audio-recorded and fully transcribed. Data were analyzed using the Content Analysis technique, Thematic Modality. RESULTS In view of considering the caregivers of older adults as a new category of workers, it was difficult to define their duties. The elderly companions themselves as well as the care receivers, their families, and the professionals that comprised the team were unclear about their duties. The professional practice of these formal caregivers has been built on the basis of constant discussions and negotiations among them and other team members in Programa Acompanhante de Idosos during daily work. This was achieved via a recognition process of their job functions and by setting apart other workers’ exclusive responsibilities. CONCLUSIONS The delimitation of specific job functions for elderly companions is currently one of the greatest challenges faced by these workers to develop and consolidate their professional role as well as improve Programa Acompanhante de Idosos.
Batista, Marina Picazzio Perez; Barros, Juliana de Oliveira; de Almeida, Maria Helena Morgani; Mângia, Elisabete Ferreira; Lancman, Selma
OBJECTIVE To understand the job function of caregivers of older adults and contribute to the debate on the consolidation of this professional practice. METHODOLOGICAL PROCEDURES This is a descriptive, qualitative, and exploratory study. Four focal group sessions were performed in 2011 with 11 elderly companions, formal caregivers of older adults in the Programa Acompanhante de Idosos (Program for Caregivers of Older Adults), Sao Paulo, SP, Southeastern Brazil. These sessions, guided by a semi-structured script, were audio-recorded and fully transcribed. Data were analyzed using the Content Analysis technique, Thematic Modality. RESULTS In view of considering the caregivers of older adults as a new category of workers, it was difficult to define their duties. The elderly companions themselves as well as the care receivers, their families, and the professionals that comprised the team were unclear about their duties. The professional practice of these formal caregivers has been built on the basis of constant discussions and negotiations among them and other team members in Programa Acompanhante de Idosos during daily work. This was achieved via a recognition process of their job functions and by setting apart other workers’ exclusive responsibilities. CONCLUSIONS The delimitation of specific job functions for elderly companions is currently one of the greatest challenges faced by these workers to develop and consolidate their professional role as well as improve Programa Acompanhante de Idosos. PMID:25372163
Sang Hee Im; Sang Chul Lee; Jae Ho Moon; Eun Sook Park; Yoon Ghil Park
Background Although some studies measured the burden of caregivers and the factors that influenced their feelings of burden, few studies have measured the quality of life (QOL) for primary caregivers of patients with muscular dystrophy (MD). We assessed the QOL for primary caregivers of patients with MD in South Korea and identified factors associated with caregivers' QOL.Methods Ninety dyads of patients with MD and their primary caregivers were enrolled in this study. The QOL of caregivers of patients with MD was assessed subjectively using the World Health Organization Quality of Life Assessment, Life Brief Form. Caregivers' emotional status was assessed using the Beck Depression Inventory (BDI) and family function level was evaluated using the Family APGAR scale. Patients reported their emotional status using the BDI or the Children's Depression Inventory. The functional levels of patients were evaluated by the modified Barthel Index.Results Caregivers' QOt. was statistically associated with family income, family function, emotional status of patients, level of education, and emotional status of caregivers (P <0.05). Caregivers who were employed had a significantly higher QOL than those who were not (P <0.05). In multiple regression analyses, emotional and employment status of caregivers was strongly associated with caregivers' QOL.Conclusion Rehabilitation teams should consider not only the physical factors of patients but also the psychological and demographic factors of primary caregivers of patients with MD.
Røthing, Merete; Malterud, Kirsti; Frich, Jan C
's illness may be unpredictable or not well understood by some of those involved in the treatment and care. AIM: The aim of this study was to explore the experiences and expectations of family caregivers for persons with Huntington's disease concerning collaboration with healthcare professionals. METHODS......BACKGROUND: Collaboration between family caregivers and health professionals in specialised hospitals or community-based primary healthcare systems can be challenging. During the course of severe chronic disease, several health professionals might be involved at a given time, and the patient......: To shed light on collaboration from the perspectives of family caregivers, we conducted an explorative, qualitative interview study with 15 adult participants experienced from caring for family members in all stages of Huntington's disease. Data were analysed with systematic text condensation, a cross...
Caqueo-Urízar, Alejandra; Gutiérrez-Maldonado, José; Ferrer-García, Marta; Miranda-Castillo, Claudia
Deinstitutionalization has forced families of patients with schizophrenia to take responsibility of informal care, without having the tools to exert their role properly. The aim of this study was to evaluate the coping strategies of caregivers of patients with schizophrenia, belonging to the Aymara ethnic group, (aborigines who are located on the highlands of Northern Chile). The studied sample comprised 45 caregivers of patients with schizophrenia users of the Mental Health Service of Arica, Chile. The results from the Family Coping Questionnaire (FCQ) show that both, Aymara and non-Aymara caregivers use the same coping strategies except for spiritual help which is more likely to be used by Aymara. This strategy might be related with the worldview they possess, thus the relation with the deities has a meaningful importance in the way of explaining and coping with different phenomena.
Cintia Hitomi Yamashita
Full Text Available Cross-sectional study that used the Social Network Index and the genogram to assess the social network of 110 family caregivers of dependent patients attended by a Home Care Service in São Paulo, Brazil. Data were analyzed using the test U of Mann-Whitney, Kruskal-Wallis and Spearman correlation. Results were considered statistically significant when p<0,05. Few caregivers participated in activities outside the home and the average number of people they had a bond was 4,4 relatives and 3,6 friends. Caregivers who reported pain and those who had a partner had higher average number of relatives who to trust. The average number of friends was higher in the group that reported use of medication for depression. Total and per capita incomes correlated with the social network. It was found that family members are the primary caregiver’s social network.
Lucía Del Carmen Quezada Berumen
Full Text Available Facing a severe injury in the children is one of the most devastating experiences that parents may face. The aim of this study was to explore the role of resilience showed by fathers and mothers of children with burns, the TBSA burned, age at the time of the burn and time since the burn in PTSD symptoms in caregivers. It was a cross-sectional study where fathers, mothers and guardians of 51 burn patients were evaluated. Results showed that the higher strength and confidence in caregivers, less severity in PTSD symptoms. The post-burn reactions of parents and guardians can affect the responses and welfare of their children. Therefore, a better understanding of factors related to the adaptation in caregivers, better attention by health services.
Ward-Griffin, C; McKeever, P
Increasing reliance on family care of elderly people at home calls for a critical analysis of the relationship between formal and informal caregivers. Although much has been written about how health professionals and family caregivers should relate to one another, we know very little about the relationships that develop between them. Using data from a qualitative study, this article illustrates that relationships between community nurses and family members caring for frail elders are complex, dynamic, and multifaceted. Shifting boundaries in caring work leads to changes in nurse-family caregiver relationships, which can be categorized as four distinct, yet interconnected, types: (1) nurse-helper, (2) worker-worker, (3) manager-worker, and (4) nurse-patient. Each type is described, and implications for nursing practice and research are discussed.
Røthing, Merete; Malterud, Kirsti; Frich, Jan C
: Huntington's disease has a major impact on family systems. Caregiver roles are shaped by impairments in the affected family member and corresponding dynamic adoption and change in roles within the family. Making assessments of the family structure and roles, professionals may understand more about how......AIM: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family. METHODOLOGY: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide....... The participants were recruited through hospital departments and a lay organisation for HD in Norway. Data from the interviews were analysed with systematic text condensation. RESULTS: Huntington's disease could have a substantial impact on the family system, the shape of roles among family members...
Letice Ericeira Valente
Full Text Available Caring for a demented family member has been associated with burden. Studies concerning health self-perception of family caregivers are still scarce. OBJECTIVE: To investigate caregivers perceived health and to look into relationships with patients and caregivers' sociodemographic and clinical data. METHOD: Dyads of dementia outpatients and family caregivers (n=137 were assessed with Mini Mental State Examination, Functional Activities Questionnaire, Neuropsychiatric Inventory and Clinical Dementia Rating. Caregivers answered Sociodemographic Questionnaire, Beck Depression and Anxiety Inventories, Zarit Burden Interview and Maslach Burnout Inventory. RESULTS: Caregivers poor perceived health was associated with emotional exhaustion, burden, depression and anxiety. Logistic regression analyses revealed caregivers' age, anxiety and physical problem as the main predictors of health self-perception. CONCLUSION: Aged family caregivers with anxiety who also report physical problem characterize a group at risk for poor self-perceived health. Evaluation of health self-perception may be useful for designing interventions to improve anxiety and physical health.
Willette-Murphy, Karen; Todero, Catherine; Yeaworth, Rosalee
This descriptive study examined sleep and mental health variables in 37 older wife caregivers for spouses with dementia compared to 37 age-matched controls. The relationships among selected caregiving variables (behavioral problems, caregiving hours, and years of caregiving), appraisal of burden, self-reported sleep efficiency for the past week, and mental health outcomes were examined. Lazarus and Folkman's stress and coping framework guided the study. Mental health and sleep were poorer for caregivers. Caregiving and appraisal of burden variables showed direct and indirect effects on mental health. However, caregiving and appraisal of burden variables were not significant for predicting sleep efficiency. Sleep efficiency was a good predictor of mental health in this sample of wife caregivers.
Klemm, Paula; Wheeler, Erlinda
The demands placed on cancer caregivers are well documented. Support for informal caregivers has been shown to increase hope and decrease psychosocial morbidity. The Internet is a readily available means of support for cancer caregivers, however little research on online support for informal caregivers of cancer patients exists. Descriptive statistics and qualitative analysis were used to evaluate messages posted over a 2-month period on an online cancer caregiver listserv. Three major themes emerged from the data: hope, emotional roller coaster, and physical/emotional/psychological responses. Supportive and hopeful statements prevailed among online participants in the current study. However, subjects also described the emotional roller coaster associated with caregiving. Emotional/physical/psychological responses included anger, weakness, exhaustion, grief, and sadness. Outcome research is needed to help evaluate the efficacy of online support for caregivers. Findings in this study can help nurses focus on some problems common to caregivers of cancer patients and plan appropriate interventions and research.
González-Abraldes, Isabel; Millán-Calenti, José Carlos; Lorenzo-López, Laura; Maseda, Ana
Most studies reflect dementia caregivers usually sustain higher levels of burden compared to other caregivers. However, they do not consider variability within the caregiver, such as personality traits. The purpose of this study was to examine the influence of extraversion and neuroticism on dementia caregiver burden. A cross-sectional descriptive study was conducted with 33 caregivers looking after demented-patients. All caregivers had intense burden levels, and their personality, depression, anxiety and self-rated health were evaluated. Personality variables had important effects on the caregiver burden and consequences on their mental health. Neuroticism was significantly correlated with burden (r=0.6, ptrait (r=0.67, pneuroticism (r=-0.42, ptrait anxiety (r=0.66, ppersonality in the theoretical and empirical models of the caring process. It is necessary to adequately assess the caregiver personality, as those presenting high levels of neuroticism and low levels of extraversion are more vulnerable to experience negative caring effects.
Han, Areum; Radel, Jeff
This qualitative study explored spousal caregiver perspectives on the experience and impact of a person-centered social program for partners with dementia. Interviews with 5 caregivers and the spouses with dementia were conducted 7 to 8 months after the program ended to explore the sustained impact of the program. Interpretative phenomenological analysis was used to support in-depth exploration of interviews. Three themes emerged including benefits of the program for caregivers, initial expectations and later perspectives of caregivers about the program, and conflicting values and perspectives between caregivers and the spouses. These findings suggest participation in a person-centered social program by people with dementia benefits their caregivers, by meeting the caregivers' desire for their spouses to increase social participation and engagement in meaningful activities. Participation in the program provided a sustained benefit to one couple in particular, by encouraging the caregiver to resume arranging activities the couple once enjoyed but now had difficulty pursuing.
Large, Samantha; Slinger, Richard
This article provides a meta-synthesis of studies focusing on grief in caregivers of people with Alzheimer's disease or related dementia. Through a systematic search, 11 articles met the inclusion criteria that care receivers had a diagnosis of Alzheimer's disease or related dementia, caregivers were informal caregivers, and the study focused on caregiver grief. The meta-synthesis followed a meta-ethnography approach based on reciprocal translation. Six themes were identified, namely challenges of caregiving, losses and changes in the relationship, the role of dementia in grief, striving despite dementia, utilising social support and death as a relief from caregiving. Themes are discussed within an integrated framework showing the connected relationships between themes. The devised framework of themes illustrates the general experience of caregiver grief and can be used to devise specific, targeted interventions to help caregivers to identify and work through their grief.
Full Text Available This paper reports on a study in two remote multilingual Indigenous Australian communities: Yakanarra in the Kimberley region of Western Australia and Tennant Creek in the Barkly region of the Northern Territory. In both communities, processes of language shift are underway from a traditional language (Walmajarri and Warumungu respectively to a local creole variety (Fitzroy Valley Kriol and Wumpurrarni English respectively. The study focuses on language input from primary caregivers to a group of preschool children, and on the children’s productive language. The study further highlights child-caregiver interactions as a site of importance in understanding the broader processes of language shift. We use longitudinal data from two time-points, approximately two years apart, to explore changes in adult input over time and developmental patterns in the children’s speech.At both time points, the local creole varieties are the preferred codes of communication for the dyads in this study, although there is some use of the traditional language in both communities. Results show that for measures of turn length (MLT, there are notable differences between the two communities for both the focus children and their caregivers. In Tennant Creek, children and caregivers use longer turns at Time 2, while in Yakanarra the picture is more variable. The two communities also show differing trends in terms of conversational load (MLT ratio. For measures of morphosyntactic complexity (MLU, children and caregivers in Tennant Creek use more complex utterances at Time 2, while caregivers in Yakanarra show less complexity in their language at that time point. The study’s findings contribute to providing a more detailed picture of the multilingual practices at Yakanarra and Tennant Creek, with implications for understanding broader processes of language shift. They also elucidate how children’s language and linguistic input varies diachronically across time. As
McRae, Cynthia; Fazio, Emily; Hartsock, Gina; Kelley, Livia; Urbanski, Shawna; Russell, Dan
This study examined loneliness among caregivers of individuals with Parkinson’s disease (PD). The sample included 70 caregivers (74% female; 96% spouses) who were currently living with the patient. A postal survey was sent to caregivers of persons with PD on the mailing list of a regional Parkinson association; response rate was 39%. Assessment instruments included the UCLA Loneliness Scale, Social Provisions Scale, Hoehn and Yahr (caregiver version), a perceived Self-Efficacy Scale developed...
Fatigue is the problematic symptom identified by cancer patients. However, fatigue has not been widely examined for caregivers of cancer patients. In this project, 131 caregivers of patients diagnosed with advanced stage cancer and actively receiving radiotherapy reported experiencing the most difficulties with fatigue (mean 46.9; on a 0 to 100 scale, with a 10-point difference having clinical meaning) at baseline and at a six-month follow-up (mean 48.3). This is in sharp contrast to other do...
Thomas F. Fisher PhD, OT, FAOTA
Full Text Available This study explores the perception of satisfaction of caregivers who attended a feeding clinic at a large pediatric hospital in the midwest. The clinic is designed for a multidisciplinary team to meet with the child and the caregiver. Thirty-five participants were involved in the study. Results indicated that most participants were satisfied with the clinic experience. However, there were areas of care not covered by the members of the feeding team, which indicates a need. It is suggested that this need could be filled by occupational therapists.
De Vito Elisabetta
Full Text Available Abstract Background Alzheimer's disease presents a social and public health problem affecting millions of Italians. Those affected receive home care from caregivers, subjected to risk of stress. The present investigation focuses on stress, anxiety and depression in caregivers. Methods Data on 200 caregivers and their patients were collected using a specific form to assess cognitive, behavioural, functional patient (MMSE, and ADL-IAD and caregiver stress (CBI. The relationship between stress, depression and disease has been assessed by means of a linear regression, logistic analysis which reveals the relationship between anxiety, stress and depression and cognitive problems, age, the patient's income. Results The caregivers are usually female (64%, mean age of 56.1 years, daughters (70.5%, pensioners and housewives (30%, who care for the sick at home (79%. Of these, 53% had little time for themselves, 55% observed worsening of health, 56% are tired, 51% are not getting enough sleep. Overall, 55% have problems with the patient's family and/or their own family, 57% at work. Furthermore, 29% feel they are failing to cope with the situation as they wish to move away from home. The increase in the degree of anxiety and depression is directly proportional to the severity of the illness, affecting the patient (r = 0.3 stress and depression r = 0.4 related to CBI score. The memory disorders (OR = 8.4, engine problems (OR = 2.6, perception disorders (OR = 1.9 sick of the patient with Alzheimer's disease are predictive of caregiver stress, depression is associated with the presence of other disorders, mainly behavioural (OR = 5.2, low income (OR = 3.4, patients Conclusion The quality of life of caregivers is correlated with the severity of behavioural disorders and duration of the Alzheimer's disease. The severity of the disease plays an important role in reorganization of the family environment in families caring for patients not institutionalised. It is
Full Text Available This study explored the role of time since diagnosis and whether the care recipient was a child, a parent, or a spouse, on caregiver’s perceptions of the caring role, with a group of 269 female cancer caregivers. Questionnaire measures were used to explore psychological and social resources and psychological distress. Analysis of variance and hierarchical multiple regression were used and identified significant effects of time since diagnosis and care recipient. This study concludes that a more tailored approach to understanding the needs of caregivers is required particularly in terms of time since diagnosis and care recipient, in order to provide more effective support.
Famakinwa, Abisola; Fabiny, Anne
Forty medical residents from major teaching hospitals in Boston, Massachusetts, participated in small group teaching sessions about caregiver stress. A teaching tool was developed that included a teaching handout, interactive cases, standard instruments for assessing caregiver stress, peer-reviewed articles about caregiving, and a list of…
Cox, Carole B.
Data on discharge process and caregiver satisfaction were collected from 179 caregivers of hospitalized dementia patients. Findings indicate that social workers are important influences in discharge decisions especially when discharge is to a nursing home. Findings from regression analyses indicate that caregiver satisfaction is dependent on the…
van der Mark, E.J.; Verrest, H.
Caregivers of disabled children face numerous challenges in meeting their child’s needs. Research on Zimbabwean caregivers of disabled children is limited. Yet the difficult socio-economic, political and institutional context is expected to complicate the caregiving task. This article examines the r
Rust, Tiana B.; See, Sheree Kwong
This study assessed professional caregivers of persons with Alzheimer disease (AD) and non-caregivers' knowledge about aging and AD. Participants completed modified versions of the Alzheimer Disease Knowledge Test and the multiple-choice version of the Facts on Aging Quiz #1. Overall, knowledge levels about AD and aging were low. Caregivers were…
Koerner, Susan Silverberg; Kenyon, DenYelle Baete
Using a daily diary design, we examined fluctuations in caregiver well-being; how day-to-day variations in stressors related to the caregiving experience are linked to fluctuations in well-being; and whether caregivers who are women, or high on certain personality traits (e.g., neuroticism) are more susceptible to emotional/physical health…
Weisensee, Mary G.; Kjervik, Diane K.
The decision-making dilemmas faced by caregivers of older persons, coordination necessary among decision makers, legal criteria for incompetency, and caregiver stress are examined. The need for clarification of incompetency criteria for improved coordination among caregivers is suggested. (Author/MLW)
Kratz, Anna L; Sander, Angelle M; Brickell, Tracey A; Lange, Rael T; Carlozzi, Noelle E
The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n = 31 parents, n = 21 partners/spouses; 77% female; mean age = 57.96 years, range = 34-78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent sub-themes indicated that caregivers are (1) overburdened with responsibilities, (2) lack personal time and time for self-care, (3) feel that their life is interrupted or lost, (4) grieve the loss of the person with TBI, and (5) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of sub-themes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ.
Lindsey, Michael A.; Browne, Dorothy C.; Thompson, Richard; Hawley, Kristin M.; Graham, Christopher J.; Weisbart, Cindy; Harrington, Donna; Kotch, Jonathan B.
In this study, the authors examined the combined effects of caregiver mental health, alcohol use, and social network support/satisfaction on child mental health needs among African American caregiver-child dyads at risk of maltreatment. The sample included 514 eight-year-old African American children and their caregivers who participated in the…
Perrin, Paul B; Norup, Anne; Caracuel, Alfonso;
OBJECTIVE: The purpose of this study was to use actor-partner interdependence modeling (APIM) to examine the simultaneous effects of both acquired brain injury (ABI) patient and caregiver ratings of patient impairments on both patient and caregiver ratings of caregiver psychosocial dysfunction. M...
Sanders, Sara; Butcher, Howard K.; Swails, Peggy; Power, James
The purpose of this study was to investigate how caregivers respond to the end stages of dementia with the assistance from hospice. Data were collected from 27 family caregivers over the course of 10 months, with each caregiver being interviewed up to 4 times during the time that the patient received hospice care. Chart review data were also…
Corrêa, Márcio Silveira; Giacobbo, Bruno Lima; Vedovelli, Kelem; de Lima, Daiane Borba; Ferrari, Pamela; Argimon, Irani Iracema de Lima; Walz, Julio Cesar
Objectives Older familial caregivers of Alzheimer’s disease patients are subjected to stress-related cognitive and psychophysiological dysfunctions that may affect their quality of life and ability to provide care. Younger caregivers have never been properly evaluated. We hypothesized that they would show qualitatively similar cognitive and psychophysiological alterations to those of older caregivers. Method The cognitive measures of 17 young (31–58 years) and 18 old (63–84 years) caregivers and of 17 young (37–57 years) and 18 old (62–84 years) non-caregiver controls were evaluated together with their salivary cortisol and dehydroepiandrosterone (DHEA) levels, as measured by radioimmunoassays and ELISA assays of brain-derived neurotrophic factor (BDNF) in serum. Results Although younger caregivers had milder impairments in memory and executive functions than older caregivers, their performances fell to the same or lower levels as those of the healthy older controls. Decreases in DHEA and BDNF levels were correlated with the cognitive dysfunctions observed in the older and younger caregivers, respectively. Cortisol at 10PM increased in both caregiver groups. Discussion Younger caregivers were prone to cognitive impairments similar to older caregivers, although the degree and the neuropsychological correlates of the cognitive dysfunctions were somewhat different between the two groups. This work has implications for caregiver and care-recipient health and for research on the neurobiology of stress-related cognitive dysfunctions. PMID:27706235
Full Text Available Background: Many factors impact caregivers' cognitive health and, by extension, their ability to provide care. This study examined the relationship between psychosocial factors and cognitive performance among dementia caregivers and established a virtual cohort of caregivers for future research. Methods: Data on 527 caregivers were collected via a Web-based survey that assessed cognitive performance. Caregiver data were compared to corresponding data from 527 age-, race-, gender-, and education-matched controls from a normative database. Caregiver self-reported sleep, stress, health, and social support were also assessed. Results: Caregivers performed significantly worse than controls on 3 of 5 cognitive subtests. Stress, sleep, perceived support, self-rated health, years of caregiving, race, and gender were significant predictors of cognitive performance. Conclusion: In this sample of dementia caregivers, psychosocial factors interacted in complex ways to impact cognitive performance. Further investigation is needed to better understand how these factors affect cognitive performance among caregivers. This could be accomplished by the establishment of a virtual cohort that facilitates the development of digital tools to support the evaluation and management of caregiver needs in a manner that helps them remain effective in their caregiving roles.
Bank, Adam L.; Arguelles, Soledad; Rubert, Mark; Eisdorfer, Carl; Czaja, Sara J.
Purpose: Dementia caregiving is a rapidly growing public health problem. Logistical problems prevent many caregivers from utilizing available interventions. This article provides a demonstration of the usefulness of technology for conducting telephone-based support groups in ethnically diverse dementia caregivers. Design and Methods: Participants…
Eisdorfer, Carl; Czaja, Sara J.; Loewenstein, David A.; Rubert, Mark P.; Arguelles, Soledad; Mitrani, Victoria B.; Szapocznik, Jose
Purpose: The majority of persons with Alzheimer's disease (AD) are cared for at home by a family member such as a spouse or daughter. Caregiving places enormous demands on these caregivers, and the negative consequences associated with caregiving are well documented. This paper reports results from the Miami site of the REACH (Resources for…
Morano, Carmen Louis
This study focused on one question: Do caregiver responses--emotion-focused coping, problem-focused coping, appraisal of burden, and appraisal of satisfaction--mediate or moderate the effects of caregiving stress on psychological well-being? Findings indicate that development of interventions that focus on how caregivers appraise their situation,…
Schulz, Richard; Hebert, Randy S.; Dew, Mary Amanda; Brown, Stephanie L.; Scheier, Michael F.; Beach, Scott R.; Czaja, Sara J.; Martire, Lynn M.; Coon, David; Langa, Kenneth M.; Gitlin, Laura N.; Stevens, Alan B.; Nichols, Linda
The purpose of this article is to stimulate discussion and research about patient suffering and caregiver compassion. It is our view that these constructs are central to understanding phenomena such as family caregiving, and that recognizing their unique role in the caregiving experience provides new directions for intervention research, clinical…
Feldman, Ruth; Klein, Pnina S.
Examined toddlers' self-regulated compliance to mothers, fathers, and caregivers. Found child emotion regulation and adult warm control in discipline situation related to self-regulated compliance to mother, caregiver, and father. Compliance to parents correlated with parental sensitivity and philosophies. Compliance to caregivers correlated with…
Groeneveld, Marleen G.; Vermeer, Harriet J.; van IJzendoorn, Marinus H.; Linting, Marielle
The current study examined professional caregivers' perceived and physiological stress, and associations with the quality of care they provide. Participants were 55 female caregivers from childcare homes and 46 female caregivers from childcare centers in the Netherlands. In both types of settings, equivalent measures and procedures were used. On…
Rozario, Philip A.; Chadiha, Letha A.; Proctor, Enola K.; Morrow-Howell, Nancy
This study--on 100 African American wife and 258 daughter primary caregivers--uses a contextual approach in its examination of the relationship between social resources and caregiver depressive symptoms. At the bivariate level, significant differences in certain key characteristics of primary caregivers and care receivers underscore the…
Musil, Carol M.; Gordon, Nahida L.; Warner, Camille B.; Zauszniewski, Jaclene A.; Standing, Theresa; Wykle, May
Purpose: Transitions in caregiving, such as becoming a primary caregiver to grandchildren or having adult children and grandchildren move in or out, may affect the well-being of the grandmother. Design and Methods: This report describes caregiving patterns at 3 time points over 24 months in a sample of 485 Ohio grandmothers and examines the…
Szinovacz, Maximiliane E.; Davey, Adam
Family caregiving research is increasingly contextual and dynamic, but few studies have examined prevalence and predictors of change in primary caregivers, those with the most frequent contact with healthcare professionals. We identified prevalence and predictors of 2-year change in primary adult-child caregivers. Data pooled from the 1992-2000…
Friedman, Mollie; Woods, Juliann; Salisbury, Christine
Early intervention (EI) providers increasingly coach and collaborate with caregivers to strengthen and support caregiver-child interactions. The EI providers learning to coach other adults benefit from knowing what, exactly, they should do to support caregivers. This article serves two purposes. First, it proposes an operationally defined,…
Markiewicz, Dorothy; Reis, Myrna; Gold, Dolores Pushkar
Examines the influence of caregivers' Attachment Styles and personality traits on their experiences of caring for dementia dependents. Results, based on 126 caregiver-dependent pairs, indicate connections between attachment style factors and caregiver experiences. Those choosing to institutionalize dependents ranked higher on Avoidance factors…
Hendricks, Charlene; Lansford, Jennifer E.; Deater-Deckard, Kirby; Bornstein, Marc H.
Using nationally representative samples of 45,964 two- to nine-year-old children and their primary caregivers in 17 developing countries, this study examined the relations between children's cognitive, language, sensory, and motor disabilities and caregivers' use of discipline and violence. Primary caregivers reported on their…
The objective of this cross-sectional study was to identify the factors associated with health-related quality of life (HRQOL) of family caregivers of Chinese stroke patients. One hundred and twenty-three stroke patients consecutively admitted to a stroke clinic and their 123 family caregivers were recruited. The caregivers' HRQOLs were assessed…
Seto, Atsuko; Dahlen, Penny
This article provides an overview of Japanese women in the role of caregivers of older family members. Cultural influence on women's identity, significance of the caregiver's role, and the struggles and rewards of being caregivers are discussed. Finally, ideas are provided for the use of arts in counseling and implications of their use are…
Kliewer, Wendy; Parrish, Katie Adams; Taylor, Kelli W.; Jackson, Kate; Walker, Jean M.; Shivy, Victoria A.
A socialization model of coping with community violence was tested in 101 African American adolescents (55% male, ages 9-13) and their maternal caregivers living in high-violence areas of a mid-sized, southeastern city. Participants completed interviews assessing caregiver coping, family context, and child adjustment. Caregiver-child dyads also…
Wallhagen, Margaret I.
Tested model representing hypothesis that perceived control mediates objective and subjective aspects of caregiving and caregiver adaptation. Findings from 60 elderly family caregivers revealed that perceived control had direct relationship with life satisfaction and depression and indirect relationship with subjective symptoms of stress. Wishful…
Thompson, Rachel H.; Bruzek, Jennifer L.; Cotnoir-Bichelman, Nicole M.
We observed 11 undergraduates in an experiment designed to simulate infant caregiving. In negative reinforcement conditions experienced by all participants, a targeted caregiving response (e.g., rocking a baby doll) produced escape from, and avoidance of, a recorded infant cry. Nine participants' caregiving was shown to be controlled by this…
Nieboer, AP; Schulz, R; Matthews, KA; Scheier, MF; Ormel, J; Lindenberg, SM
In this paper we examine the effects of increasing as well as decreasing caregiving demands on depressive symptomatology. In addition, we focus on spousal caregivers' activity restriction as an explanatory mechanism for changes in depressive symptomatology in the caregiving context. Two databases ar
Wiley, Rachel E.; Berman, Steven L.
The present study addresses the relationships of caregiver identity status on their adolescent children's identity distress and psychological symptom severity among a sample of adolescents (age 12-19) in treatment at a community mental health center (N = 60 caregiver-child dyads). A significant proportion of caregivers (10%) and their adolescent…
Kheir, Nadir; Ghoneim, Ola; Sandridge, Amy L.; Al-Ismail, Muna; Hayder, Sara; Al-Rawi, Fadhila
Introduction: Caring for a child diagnosed with autism could affect the quality of life of the caregiver in various different ways. No previous research has assessed the quality of lives of caregivers of children with autism in Qatar. Methods: Caregivers of a child with autism between 3 and 17 years old were recruited from child rehabilitation…
Hsieh, Hsiu-Fang; Wang, Jing-Jy; Yen, Maiofen; Liu, Tzu-Ti
Institutionalized elderly who are frail and dependent are vulnerable to be abused by overwhelmed caregivers especially caregiver psychological abusive behavior is a growing but hidden problem with few evidence-based interventions. The purpose of this study was to examine the effectiveness of an educational support group in alleviating caregiver's…
Full Text Available This study investigated the effects of hospital Clown Doctors intervention on child and caregiver preoperative anxiety at the entrance to the surgery care unit and separation from caregivers. A total of 88 children (aged 4-12 years were assigned to one of the following two groups: Clown Doctors intervention or control group (standard care. Independent observational records using the modified Yale Preoperative Anxiety Scale instrument assessed children’s anxiety, while the State-Trait Anxiety Inventory measured caregiver’s state anxiety. In addition, caregivers assessed the children’s functional health problems by completing the Functional Status Questionnaire. Although no effects of Clown Doctors were found on children’s anxiety, results showed that both low functional health problems and Clown Doctors intervention were significant predictors of lower caregiver anxiety. Caregivers also reported being very satisfied with their intervention. Overall, this study demonstrated the positive role of Clown Doctors for caregivers at a specific paediatric hospital setting.
Brinton, Bonnie; Fujiki, Martin
This article focuses on two aspects of emotional intelligence, emotion understanding and emotion regulation. These abilities are important because of their impact on social communication and the way in which they influence a child's access to knowledge. Caregivers who engage their children in emotion talk may strengthen the ability of their…
B P Nirmala
Full Text Available Background: Family′s expressed emotion has been shown to be predictive of outcome in mental and physical illnesses in a variety of cultural settings. The relationship between caregiver burden and high level of expressed emotions has demonstrated a high level of relapse among the psychiatric patients in the West. Aim: The current study explores the relationship between caregivers′ burden and level of expressed emotions by the patients with schizophrenia in Indian setting. Materials and Methods : The sample for the study consisted of totally 70 subjects comprising 35 schizophrenic patients and 35 caregivers. The schizophrenic patients who were attending the Day Care Center run by Department of Psychiatric and Neuro Rehabilitation Unit at National Institute of Mental Health and Neuro Sciences (NIMHANS in Bangalore, India (a tertiary care center and their primary caregivers were included. Family emotional involvement and criticism scale and The burden assessment schedule were administered to assess the expressed emotions and caregivers′ burden. Carl Pearson Correlation test used to study the relationship between the variables. Results and Conclusion: The study highlighted the need for addressing expressed emotion in comprehensive psychosocial intervention plan. More attention should be paid to the needs of the caregivers in order to alleviate their burden in managing mentally ill patients.
.... Mothers and fathers resume care for children returning home as wounded warriors. Friends and relatives form networks to support loved ones with disabilities. All of them give selflessly to bring comfort, social engagement, and stability to those they love. Family caregivers have an immeasurable impact on...
Jones, Lisa M.; Atoro, Kathryn E.; Walsh, Wendy A.; Cross, Theodore P.; Shadoin, Amy L.; Magnuson, Suzanne
Qualitative responses by caregivers (n = 203) and youth (aged 8 and older; n = 65) about their experiences with sexual abuse investigations were analyzed in conjunction with quantitative ratings of satisfaction. Respondents described mostly high levels of satisfaction, although dissatisfaction was reported with some key aspects of investigations.…
Bonach, Kathryn; Mabry, J. Beth; Potts-Henry, Candice
This study is a case evaluation research report on one Children's Advocacy Center that provides a coordinated response to allegations of child maltreatment, particularly sexual abuse. The data come from a mailed survey of nonoffending caregivers measuring their satisfaction with services provided through the Children's Advocacy Center. The results…
... stipends. Under this law, injured veterans' family caregivers also receive access to health care. Just as... system, our workplaces, and our communities. This month, as we reflect on the generosity, grace, and... America, by virtue of the authority vested in me by the Constitution and the laws of the United States,...
Birsan, Sandrine; Guichoux, Julie; Rodriguez, Marie-Pierre; Brissaud, Olivier
When treating a child hospitalised in a neonatal or paediatric unit, the emotions of the child's parents are of particular concern for the caregivers. The emotional experience of the nursing teams, however, is rarely taken into account, despite it having an impact on the quality of the support. Group discussion and individual reflection around professionals' emotions is essential.
Bakke, Bruce L.
This guide to preventing self-injurious behavior, in question-and-answer format, is intended for parents, teachers, and other caregivers of people with disabilities. It describes the more common types of self-injurious behavior, discusses methods for identifying causes of self injury, and outlines interventions. Specifically, the guide covers: (1)…
Granello, Paul F.; Fleming, Matthew S.
Alzheimer's disease is a progressive condition that results in brain wasting and eventual death. With its increasing diagnosis rate, counselors will likely acquire clients with Alzheimer's disease or their caregivers. Important background information and several practical counseling methods are provided that may assist counselors working with this…
Kesner, John E.
Based on Bowlby's attachment theory, which hypothesized that the caregiver-child relationship may play an important role in the social and academic adjustment of the child, this pilot study assessed the attitudes of student teachers regarding attachment issues. The subjects for this study were 38 graduate students in a teacher preparation program.…
Song, Y.; Groeneveld, B.S.; Boess, S.U.; Freudenthal, A.
Informal caregivers, who are usually family members or friends of care recipients, provide unpaid assistances to help care recipients remain in their homes. However, they may be prone to depression, grief, fatigue and changes in social relationships. This paper presents the development process of a
Full Text Available Recent work in animals suggests that the extent of early tactile stimulation by parents of offspring is an important element in early caregiving. We evaluate the psychometric properties of a new parent-report measure designed to assess frequency of tactile stimulation across multiple caregiving domains in infancy. We describe the full item set of the Parent-Infant Caregiving Touch Scale (PICTS and, using data from a UK longitudinal Child Health and Development Study, the response frequencies and factor structure and whether it was invariant over two time points in early development (5 and 9 weeks. When their infant was 9 weeks old, 838 mothers responded on the PICTS while a stratified subsample of 268 mothers completed PICTS at an earlier 5 week old assessment (229 responded on both occasions. Three PICTS factors were identified reflecting stroking, holding and affective communication. These were moderately to strongly correlated at each of the two time points of interest and were unrelated to, and therefore distinct from, a traditional measure of maternal sensitivity at 7-months. A wholly stable psychometry over 5 and 9-week assessments was not identified which suggests that behavior profiles differ slightly for younger and older infants. Tests of measurement invariance demonstrated that all three factors are characterized by full configural and metric invariance, as well as a moderate degree of evidence of scalar invariance for the stroking factor. We propose the PICTS as a valuable new measure of important aspects of caregiving in infancy.
Carter, Patricia A
Depression is a normal response when a family member receives a diagnosis of cancer. However, this response may be exacerbated by other factors such as chronic sleep loss that are amenable to intervention. This pilot study described caregiver sleep and depression patterns over time and explored the feasibility of data collection methods and instruments. The stress and coping framework of Lazarus and Folkman guided this study. A descriptive correlational design was used for this 10-week pilot study. Ten adult family caregivers of patients with cancer were recruited from outpatient oncology clinics. Sleep quality and depression were measured weekly. Actigraphs were worn for 72 hours during weeks 1, 5, and 10. Individual sleep quality and depression scores were generated. Actigraph latency, duration, and efficiency scores were generated. Actigraph and sleep quality scores were compared. Individual caregiver sleep and depression plots show large variance over time. Discrepancies were noted between Actigraph and sleep quality latency, duration, and efficiency scores. Sleep and depressive symptoms fluctuate widely over time. Therefore, accurate assessment and treatment of caregiver problems require repeated assessments. Self-reports of sleep and depression appear to underestimate problems and must be evaluated carefully within this context.
Cristina Anguita Carpio
Full Text Available Family is the main care source for the dependent person. The act of looking after somebody, involves the development of multiple tasks, apart from spending a lot of time. This implies a series of requirements that would be able to damage the family caregivers’ quality of life, and definitively, their health. Objetive: training for family caregivers to provide quality care, in order to succeed in this project, we establish three specific aims: improving the information and training, increase self-care abilities and focus on resources and support services for informal caregivers. Methods: We are going to implement an educative intervention in a group of 12 informal caregivers of people over 65 years, dependent on chronic diseases and develop home care. The program will be composed of 10 sessions, each one of two-hour-long. The first session will consist of an introduction and the last session will be reserved to solve doubts and to deal with the assessment of the program. Throughout the rest of sessions, contents about training, self, resources and assistance services for caregivers will be proposed. In order to evaluate the efficiency of the program, a multiple choice questionnaire will be taken both al the beginning and at the end of the different sessions. In order to evaluate the human resources and the applied methodology, another questionnaire will be passed.
Bigbee, Jeri L.; Musil, Carol; Kenski, Diane
Purpose: The purpose of this study was to compare the characteristics of rural versus urban caregiving grandmothers along with their physical and mental health status. Methods: A secondary analysis of data produced from the first wave of a longitudinal study of 485 Ohio grandmothers was conducted. Health status was measured using the SF-36 Health…
Talon-Chrétien, Marie-Claire; Jakovenko, Florence; Franzin-Garrec, Martine; Révy, Michèle; Nerich, Blandine; Roucoules, Brice
Home care is provided by different partners who may be self-employed in private practice, part of an association or employed by the hospital. For optimal patient management, all these caregivers, whatever their role, must collaborate while respecting the work of each individual. This collective consciousness requires the reorganisation of our care system to improve efficiency. Communication between everyone is essential.
Walker, Alexis J.; Allen, Katherine R.
Qualitative study of 29 pairs of widowed mothers and caregiving daughters employed social exchange theory to identify three relationship types: intrinsic, ambivalent, and conflicted. Found types differed in extent to which women received rewards from interacting with partner, experienced costs in interactions, handled conflicts in relationships,…
Full Text Available The world population is ageing, with the proportion of older people (65+ years expected to reach 21% in 2050 and to exceed the number of younger people (aged 15 or less for the first time in history. Because cancer is particularly a chronic disease of older people, a large increase in the number of elderly patients with cancer is anticipated. The estimated number of new cancer cases worldwide among people over 65 is expected to grow from about 6 million in 2008 to more than 11 million during the coming decade. By 2030, individuals over 65 are expected to account for 70% of all cancer patients in the Western world.Along with the increase in oncology patients, the number of older people caring for their ill spouses or other relatives is also growing, with the ensuing toll on these caregivers causing major concern, especially in western countries.In different societies the characteristics of family caregiver stressors, cultural norms concerning care giving, and the availability of support have a huge impact on those providing care. Any study of older caregivers of older cancer patients requires an integrative evaluation of ageing that takes into account cultural, social, psychological, and behavioral variables.This review proposes a critical discussion of the multidimensionality of the caregiving and of the impact that age, culture and gender have on it.
O'Quin, K. E.; Semalulu, T.; Orom, H.
Medication mismanagement is a growing public health concern, especially among elders. Annually, it is a major contributor to emergency hospitalization and nursing home placement. Elders and their caregivers, as healthcare consumers and stakeholders in this issue, are uniquely qualified to inform strategies to improve medication adherence. We…
Findlay, Laura; Williams, Amanda C. de C.; Baum, Sandra; Scior, Katrina
Background: Caregivers have an intimate knowledge of the individuals they care for and are therefore an important source of information on pain experiences. They are often relied upon to recognize pain-related behaviours and report them, but little is known as to how they experience their role. Methods: Information was collected from 11 caregivers…
The results of four small studies of the polycyclic aromatic hydrocarbon (PAH) exposures of preschool children in low-income families from the Piedmont area of North Carolina were combined to allow comparisons of the total exposures of the children and their adult caregivers. I...
Full Text Available Abstract Background Caring for a person with progressive cancer creates challenges for caregivers. However the needs of caregivers are often not assessed or recognised by health care providers. Research is also lacking in this area, with little knowledge relating to effective strategies to address the specific needs of caregivers. This paper outlines a study protocol aimed at developing and evaluating the effectiveness of a general practice-based intervention to better meet the needs of caregivers of patients with advanced cancer. Methods/Design Two hundred and sixty caregivers will be randomised into each of two arms of the intervention (520 participants in total through patients with advanced cancer attending medical and radiation oncology outpatient clinics at two tertiary hospital sites. Consenting caregivers will be followed up for six months, and telephone surveyed at baseline, 1, 3 and 6 months following their entry into the study or until the patient's death, whichever occurs first. Assessment and management of the unmet needs of caregivers in the intervention arm will be facilitated through a specifically developed general practice-based strategy; caregivers in the control group will receive usual care. Qualitative interviews will be conducted with a sample of up to 20 caregivers and 10 GPs at the conclusion of their participation, to explore their views regarding the usefulness of the intervention. Discussion This study will determine whether systematic assessment of caregiver needs supported by caregiver-specific information for General Practitioners is effective in alleviating the unmet needs experienced by caregivers caring for patients with advanced cancer. Trial registration number ISRCTN: ISRCTN43614355
Wood, Andrew W; Gonzalez, Jessica; Barden, Sejal M
Caregivers of cancer survivors face many burdens that often require treatment by mental health professionals. One intervention, mindfulness-based cognitive therapy, aims to help individuals change the ways in which they relate to their thoughts rather than changing their thoughts. In this manuscript, we discuss the use and adaption of mindfulness-based cognitive therapy with caregivers of cancer survivors as a way to decrease caregiver burden and increase caregiver quality of life. A session-by-session breakdown of how to tailor mindfulness-based cognitive therapy to caregivers of cancer survivors is provided.
Richardson, Amy E; Morton, Randall; Broadbent, Elizabeth
This study investigated the contribution of patient and caregiver illness perceptions to the quality of life of head and neck cancer (HNC) patients. Ninety-eight patients and their caregivers (n = 80) completed questionnaires at diagnosis. Caregivers' illness perceptions were significantly more negative than patients with respect to consequences, timeline, treatment, concern, and the emotional impact of HNC. The interaction between some patient and caregiver illness perceptions explained additional variance in patient quality of life, above and beyond patients' own illness perceptions. These findings suggest that caregivers should be included in psychological interventions to improve HNC patient quality of life.
Dillahunt-Aspillaga, Christina; Jorgensen-Smith, Tammy; Ehlke, Sarah; Sosinski, Melanie; Monroe, Douglas; Thor, Jennifer
Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.
Morano, Carmen L; King, Denise
This study used an adaptation of the stress and appraisal model to examine the mediating effects of religiosity on caregiving strain and gain with an ethnically diverse sample of 384 Alzheimer's disease caregivers. While the regression analysis indicated that religiosity did not mediate the stress of providing care for the entire sample, there were significant differences in the use of religiosity depending on the ethnicity (African American, Hispanic, and White non-Hispanic) of the caregiver, as well as significant differences between the three cohorts in the levels of caregiving strain (depression) and gain (self-acceptance). Implications for the use of religiosity as a protective factor for AD caregivers are discussed.
Bevan, Jennifer L; Vreeburg, Sean K; Verdugo, Sherri; Sparks, Lisa
With job markets expanding globally and life expectancy continually increasing, more demands are being placed on distant relatives to provide care for their aging family members, creating a health care situation known as long-distance caregiving. An online survey explored the relations between negative health perceptions by long-distance caregivers and conflict frequency and conflict strategy usage. The authors observed positive significant relations between distant caregiver negative health perceptions and conflict frequency and usage of the distributive and avoidance conflict strategies. However, they observed no significant associations between distant caregiver negative health perceptions and usage of the two integrative strategies. Implications for long-distance caregiving communication are discussed.
Pakenham, Kenneth I; Cox, Stephen
This study explored youth caregiving for a parent with multiple sclerosis (MS) from multiple perspectives, and examined associations between caregiving and child negative (behavioural emotional difficulties, somatisation) and positive (life satisfaction, positive affect, prosocial behaviour) adjustment outcomes overtime. A total of 88 families participated; 85 parents with MS, 55 partners and 130 children completed questionnaires at Time 1. Child caregiving was assessed by the Youth Activities of Caregiving Scale (YACS). Child and parent questionnaire data were collected at Time 1 and child data were collected 12 months later (Time 2). Factor analysis of the child and parent YACS data replicated the four factors (instrumental, social-emotional, personal-intimate, domestic-household care), all of which were psychometrically sound. The YACS factors were related to parental illness and caregiving context variables that reflected increased caregiving demands. The Time 1 instrumental and social-emotional care domains were associated with poorer Time 2 adjustment, whereas personal-intimate was related to better adjustment and domestic-household care was unrelated to adjustment. Children and their parents exhibited highest agreement on personal-intimate, instrumental and total caregiving, and least on domestic-household and social-emotional care. Findings delineate the key dimensions of young caregiving in MS and the differential links between caregiving activities and youth adjustment.
Lee, I; Chou, Fan-Hao; Chen, Chung-Hey
Due to the phenomenon of Taiwan'saging population has made, long-term care has become an issue of increasingly emphasized importance. According to the statistics, the family takes responsibility for most long-term care duties and more than 70% of primary family caregivers are female. In the past, because of gender-based divisions of labor and gender role expectations made, it was taken for granted that females would be the socially preferred family caregivers. Those men who devoting in themselves to such work were regarded as a rare precious. As such, family care signified entailed different life experiences for males and females. Over the years, amendments to the civil code have recognized family care contributions, and the allowance for caregivers underlines that care responsibilities have shifted away from the family to society. Traditional gender divisions of labor today are significantly more blurred; family structures have become smaller in size; female labor in the workplace has increased; and ten-year long-term care plans and long-term care insurance have been successively implemented. These transformations will make labor outsourcing more and more popular and transform family care from a private problem to a pubic policy issue. In the future, family caregivers require consideration and support on a sustained basis. It is also important to improve and monitor the quality of care services. Nurses, the major professional members of long-term care teams, should be concerned over the issue of family care while providing nursing care. They should include family caregivers in the care plan so that they can make sure that patients receive comprehensive and constant care in order to enhance the overall quality of nursing care.
Kim, Jin-Sun; Lee, Eun-Hyun
In Western cultures, adverse health effects resulting from providing care for impaired elders is well documented for family caregivers, but little is known about the health of Korean caregivers. This study examined the level of depression and physical health of 120 daughter and daughter-in-law caregivers who cared for cognitively or functionally impaired elderly in Korea. It was hypothesized that cultural factors would have a greater effect on caregivers' health outcomes than noncultural factors, but, contrary to this expectation, the effects of noncultural factors were found to outweigh those of cultural factors. Moreover, the caregivers in this study reported a relatively high level of depression, and more caregivers rated their own health as "poor" than did Western caregivers in previous studies. Family caregiving for the impaired elderly is stressful and negatively affects Korean caregivers' health outcomes regardless of societal values such as filial piety and familism regarding parent care in Korea. Culturally acceptable and sensible support programs may be useful in sustaining long-term care at home by Korean daughter and daughter-in-law caregivers. Further family caregiving studies in the Korean sociocultural context are recommended.
Srinivasagopalan, Nappinnai, Solayappan
Full Text Available Background: Caregivers of individuals suffering from cancer illnesses are at risk of having subjected to mental health consequences. There is a paucity of data comparing the caregiver burden of cancer breast and cancer cervix patients. Aim: The aim of the present study is to compare the caregiver burden of cancer breast and cancer cervix patients. To study the association of caregiver burden with demographic factors like age, gender, duration of caregiving etc. Materials & Methods: This Cross sectional study is performed on the key relatives of patients of 31 cancer cervix and 31 cancer breast patients. Burden assessment schedule was used. Results: Our findings suggest burden is more in male caregivers of breast cancer patients. It is not so in caregivers of cancer cervix patients. Whenever the caregiver is closely related to the patients the burden is high in both groups. Whenever the burden scores were high the depression scores were also high. Treatment modalities as a whole correlates with burden scores in caregivers of breast cancer patients but not in cancer cervix patients. Conclusion: Caregivers with breast and cervical cancer patients are vulnerable if the caregiver is male, from low socioeconomical background, more closely related and when the patients received poor treatment modalities.
Full Text Available To assess the caregiver burden and factors determining the burden in patients receiving ranibizumab therapy for neovascular AMD (nAMD.This is a cross-sectional questionnaire survey of 250 matched patient caregiver dyads across three large ophthalmic treatment centres in United Kingdom. The primary outcome was the subjective caregiver burden measured using caregiver reaction assessment scale (CRA. Objective caregiver burden was determined by the caregiver tasks and level of care provided. The factors that may predict the caregiver burden such as the patient's visual acuity of the better eye and vision related quality of life, demographics, satisfaction and support provided by the healthcare and the health status of the dyads were also collected and assessed in a hierarchical regression model.The mean CRA score was 3.2±0.5, similar to the score reported by caregivers for atrial fibrillation who require regular hospital appointments for monitoring their thromboprophylaxis. Caregiver tasks including accompanying for hospital appointments for eye treatment and patient's visual acuity in the better eye were the biggest contributors to the caregiver burden hierarchical model explaining 18% and 11% of the variance respectively.Ranibizumab therapy for nAMD is associated with significant caregiver burden. Both disease impact and treatment frequency contributed to the overall burden.
Lathan, Corinna; Wallace, Angela S.; Shewbridge, Rita; Ng, Nicole; Morrison, Glenn; Resnick, Helaine E.
Background Many factors impact caregivers’ cognitive health and, by extension, their ability to provide care. This study examined the relationship between psychosocial factors and cognitive performance among dementia caregivers and established a virtual cohort of caregivers for future research. Methods Data on 527 caregivers were collected via a Web-based survey that assessed cognitive performance. Caregiver data were compared to corresponding data from 527 age-, race-, gender-, and education-matched controls from a normative database. Caregiver self-reported sleep, stress, health, and social support were also assessed. Results Caregivers performed significantly worse than controls on 3 of 5 cognitive subtests. Stress, sleep, perceived support, self-rated health, years of caregiving, race, and gender were significant predictors of cognitive performance. Conclusion In this sample of dementia caregivers, psychosocial factors interacted in complex ways to impact cognitive performance. Further investigation is needed to better understand how these factors affect cognitive performance among caregivers. This could be accomplished by the establishment of a virtual cohort that facilitates the development of digital tools to support the evaluation and management of caregiver needs in a manner that helps them remain effective in their caregiving roles. PMID:27099613
Farcnik, Karl; Persyko, Michelle S
The reduction of caregiver burden for those caring for patients with Alzheimer's disease (AD) is especially important given the prevalence of AD as populations age. This paper reviews the complex nature of caregiver burden, how it is measured, and possible interventions that may affect caregiver burden. Caregiver characteristics as well as symptoms exhibited by patients contribute to burden. A number of specific quantitative measures which have been developed to better evaluate caregiver burden are discussed. Such measures are also useful in measuring the impact of interventions on caregiver burden. Pharmacological treatment of patients with AD through the use of acetylcholinesterase inhibitors has positively affected cognition, activities of daily living, and behavioural problems. These benefits significantly reduce caregiver burden. The same is true for psychosocial interventions for the caregiver. It has been suggested that combining both approaches should be utilised for optimal management. Our knowledge of caregiver burden has greatly increased over the past two decades with clear benefits for both patients and caregivers. However, many aspects still clearly require further research. Given the significance of caregiver burden, various aspects have been extensively studied including contributing and protective factors, quantitative assessment, and pharmacological and psychosocial intervention. It is important for clinicians to be aware of this knowledge so that they can effectively incorporate it into their treatment plans for those affected by AD.
Conclusions: The more severe pathogenic condition of the patient, the heavier the psychological pressure is on their family member caregivers. Medical staff should therefore pay close attention to the psychological health of family caregivers of TBI patients, especially family caregivers of critical cases. Interventions should be accordingly designed and conducted to meet the needs of family caregivers.
Harmell, Alexandrea L; Chattillion, Elizabeth A; Roepke, Susan K; Mausbach, Brent T
The recent aging trend in the United States has resulted in exponential growth in the number of informal dementia caregivers. Caring for a family member with dementia has been associated with negative health outcomes that are likely related to physiologic changes resulting from stress. However, caregiving is not always associated with health morbidity. In this review, we highlight resilience factors that appear to have a beneficial relationship with health outcomes. Specifically, we highlight 11 studies that examined the relationship of one of three broad resilience domains (personal mastery, self-efficacy, and coping style) to caregiver health outcomes. Our main findings were that higher levels of personal mastery and self-efficacy, and increased use of positive coping strategies appear to have a protective effect on various health outcomes in dementia caregivers. Continued research is warranted to help guide prospective directions for caregiver interventions focusing on increasing caregiver resilience and the corresponding impact on caregiver health.
Hanser, Suzanne B; Butterfield-Whitcomb, Joan; Kawata, Mayu; Collins, Brett E
The purpose of this exploratory study was to test a caregiver-administered music program with family members who have dementia. The music protocol was designed to reduce distress and enhance satisfaction with caregiving, while offering the person with dementia the potential to improve mood and psychological state. Fourteen elders with dementia and their family caregivers were recruited, and 8 completed the protocol. Both caregivers and care recipients improved self-reported relaxation, comfort, and happiness, when mean scores were compared between baseline and music conditions. Caregivers showed the most benefit. While drop-out was high (6 families dropped), and caregiving satisfaction failed to improve over time, caregivers expressed enjoyment in reminiscing and participating in musical activities with their loved ones. More direct intervention by a music therapist is recommended to improve impact.
Gelman, Caroline Rosenthal
Despite the long-held view that Latinos' value and reliance on family leads to greater involvement of extended family in caring for sick members and reduced perception of burden, some research reports low levels of social support and high levels of distress among Latino caregivers. We explore this seeming discrepancy in a qualitative study of 41 Latino caregivers of family members with Alzheimer's disease, interviewing them regarding the role of familism in their caregiving experience. For some it facilitates caregiving in the traditional, expected manner. Other caregivers disavow its current relevance. Yet others feel a contrast between familism, which they may value in a general, abstract way and more personal, immediate negative feelings they are experiencing from caregiving. We discuss these complex, multidimensional findings, the variation among caregivers, and present implications for practice, policy, and research.
Y. John Mei
Full Text Available Lifestyle changes such as in physical exercise, social activity, and diet can mitigate cognitive decline and improve quality of life in caregivers and care recipients with cognitive impairment. However, caregiver perspectives on lifestyle change remain largely unexamined. This study compares perspectives among caregivers for those with dementia and those with mild cognitive impairment (MCI. Interviews were conducted with caregivers in two sites in China, and thematic similarities and differences were examined between the two groups. Caregivers from both groups identified exercise, social activity, and diet as healthy ways of life. Differences were found in approaching lifestyle change based on health of the care recipient. Caregivers for patients with dementia found more often that they had no time or possibility for change, while caregivers for individuals with MCI were more often hopeful about change.
Patrícia Paes Araujo Fialho
Full Text Available OBJECTIVE: It was to examine the effects of a Cognitive-Behavioral Therapy (CBT program administered to family caregivers of dementia patients. METHODS: Forty family caregivers were enrolled in a CBT intervention across eight weekly sessions. Cognitive, functional and behavioral status of patients were evaluated, as well as their own and their family caregivers' perceptions of quality of life. Specific instruments were also applied to evaluate caregiver stress level, coping, anxiety and depression. RESULTS: At the end of the program, family caregivers reported fewer neuropsychiatric symptoms among patients and an improvement in patients' quality of life. In addition, caregivers changed their coping strategies, whereas a significant decrease was observed in their anxiety levels. CONCLUSION: The CBT program employed appears to be a promising and useful tool for clinical practice, displaying positive effects on quality of life and neuropsychiatric symptoms of dementia, as well as proving beneficial for alleviating anxiety and stress in family caregivers.
The dependence scale has been designed to be sensitive to the overall care needs of the patient and is considered distinct from standard measures of functional ability in this regard. Little is known regarding the relationship between patient dependence and caregiver burden. We recruited 100 patients with Alzheimer\\'s disease or mild cognitive impairment and their caregivers through a memory clinic. Patient function, dependence, hours of care, cognition, neuropsychiatric symptoms, and caregiver burden were assessed. Dependence was significantly correlated with caregiver burden. Functional decline and dependence were most predictive of caregiver burden in patients with mild impairment while behavioral symptoms were most predictive in patients with moderate to severe disease. The dependence scale demonstrated good utility as a predictor of caregiver burden. Interventions to reduce caregiver burden should address patient dependence, functional decline, and behavioral symptoms while successful management of the latter becomes more critical with disease progression.
Foust, Janice B; Vuckovic, Nancy; Henriquez, Ernesto
Increasing national attention is focused on improving posthospital transitions. Home health patients are in an opportune position to provide insight into this transition as they resume care for themselves with informal caregivers and home health professionals. This qualitative study describes the experiences of patients, informal caregivers, and home health clinicians during the posthospital transition. A total of 40 patients, 35 informal caregivers, and 15 clinicians participated in this study. Patients recalled receiving discharge instructions but with few details and limited information about follow-up actions if they had problems. Discharge instructions were a versatile means of communication. Home health clinicians used these instructions to guide discussions with patients and their caregivers. Both informal caregivers and home health care clinicians emphasized the inadequate preparation of caregivers during the discharge process. More attention is needed to proactively engage informal caregivers and involve home health clinicians who can facilitate the implementation of discharge plans to improve patient outcomes.
Al-Jauissy, M S
This descriptive exploratory study was conducted to describe the health care needs and identify unmet needs of the caregivers of cancer patients in Jordan. A total of 82 caregivers accompanying patients to an outpatient chemotherapy clinic completed the 90-item caregiver need scale. Caregivers reported 75.6% of scale items as needs and rated these as "very important" needs on all 6 areas of the caregivers' need scale: personal care, activity management, involvement with health care, work, interpersonal interaction and finance. Unmet needs of caregivers were a higher proportion of identified needs (76.4%) than in similar studies elsewhere. The education and support needs of caregivers need to be considered when designing care plans for cancer patients.
Full Text Available Background: Caring for a patient with Alzheimer’s disease (AD is associated with poor quality of life and deteriorating health for the caregiver. Methods: This comprehensive review was performed to investigate the current literature on caregiver burden, factors affecting caregiver burden and the effectiveness of different types of intervention. Results: Successful psychoeducational interventions for caregivers have included provision of information about AD, care planning, advice about patient management and the importance of self-care, skills training to aid patient management, stress management training, and problem-solving and decision-making guidance. Conclusion: Interventions that are individually tailored to the caregiver are particularly effective at reducing caregiver burden and should be further investigated. The use of effective pharmacological treatment for the improvement and/or stabilisation of AD symptoms in the patient is also likely to improve caregiver burden.
Full Text Available Family caregivers of patients with terminal-stage cancer have numerous roles as caregivers, which can influence their anticipatory grief. The purpose of this study was to clarify how talking to family caregivers of patients with terminal illness using the narrative approach can influence such caregivers’ process of anticipatory grief. We conducted the narrative approach as an intervention with two family caregivers several times and qualitatively analyzed their narratives. The results indicated that these family caregivers had two primary roles—family member and caregiver—and that family caregivers felt trapped in their caregiver role. The narrative approach helped them transition into the role needed for coping with the loss.
The purpose of this research was to examine the effects of teaching primary caregivers to conduct formative assessment procedures on the development of social interactions between themselves and their infants who were born prematurely and had low birth weight, and who were from economically disadvantaged families. Children's overall development…
Mugisha, Joseph; Scholten, Francien; Owilla, Sebastian; Naidoo, Nirmala; Seeley, Janet; Chatterji, Somnath; Kowal, Paul; Boerma, Ties
Older caregivers have major caregiving responsibilities in countries severely affected by the HIV epidemic, but little is known about their own health and well-being. We conducted this study to assess the association of caregiving responsibilities and self-perceived burden with caregivers' health, HIV status, background characteristics and care-receiving among older people in South Western Uganda. Men and women aged 50 years and older were recruited from existing cohort studies and clinic registers and interviewed at home. Health was measured through a composite score of health in eight domains, anthropometry and handgrip strength. Summary measures of caregiving responsibilities and self-reported burden were used to analyse the main associations. There were 510 participants, including 198 living with HIV. Four fifths of women and 66% of men were caregivers. Older respondents with no care responsibility had poorer scores on all health indicators (self-reported health score, body mass index and grip strength). Having a caregiving responsibility was not associated with poorer health status or quality of life. Notably, HIV-infected people, whether on antiretroviral treatment (ART) or not, had similar caregiving responsibilities and health status as others. The self-reported burden associated with caregiving was significantly associated with a poorer health score. One third of female caregivers were the single adult in the household with larger caregiving responsibilities. Many of these women are in the poorest wealth quartile of the households in the study and are therefore more likely to need assistance. Physical and financial supports were received by 70% and 63%, respectively. Those with larger caregiving responsibilities more frequently received support. Caregiving responsibilities were associated with better health status, greater satisfaction and quality of life. Older HIV-infected people, whether on ART or not, had similar caregiving responsibilities and self
Nozoe, Karen T.; Helena Hachul, MD, PhD; Camila Hirotsu, PhD; Daniel N. Polesel, MSc; Gustavo A. Moreira, MD, PhD; Sergio Tufik, MD, PhD; Monica L. Andersen, PhD
Introduction: The task of the caregiver, especially a caregiving mother of a son with a chronic and fatal disease, may interfere with their quality of sleep, sexuality, and some hormone levels. Aim: The aim of this study was to evaluate the sexual function and the quality of sleep of caregiving mothers of sons with Duchenne muscular dystrophy (DMD). Methods: We evaluated 20 caregiving mothers of sons with DMD and 20 caregiving mothers of sons without any neuromuscular or chronic disease...
Fabiola Yonte Huete
Full Text Available Cross-sectional observational study of 50 caregivers of dependent patient immobilized. We analyzed the sociodemographic characteristics, type and characteristics of care, social, emotional and quality of life of main caregivers. Sociodemographic and care characteristics related to dependent patient immobilized was also studied. Objective: Describing the profile of dependent patient immobilized and their caregiver, and the emotional and social characteristics perceived by the main caregiver. Results: The age of dependent patient immobilized is rising particulary in women, with mental deterioration and dementia as principal diseases. The most of main caregivers are women, married women and daughters of dependent patient immobilized patients, with primary studies, in the middle age. They work almost the complete day in patient care, having less than two hour for themselves. The lack of money is the principal need felt it. The most of caregivers suffer mild to moderate stress and higher anxiety levels than general population, especially in females. Caregiver perceived quality of life is lower than general population too. Conclusions: To know the profile of dependent patient immobilized patient´s caregiver and the factors perceived burden caregiver´s, it is important developing interventions and plans to improve their quality of life related to health in order to reduce the syndrome of main caregiver.
Flechl, Birgit; Ackerl, Michael; Sax, Cornelia; Oberndorfer, Stefan; Calabek, Bernadette; Sizoo, Eefje; Reijneveld, Jaap; Crevenna, Richard; Keilani, Mohammad; Gaiger, Alexander; Dieckmann, Karin; Preusser, Matthias; Taphoorn, Martin J B; Marosi, Christine
Glioblastoma multiforme (GBM) still harbors a fatal prognosis. The involvement of the neurocognition and psyche poses unique challenges for care provision by relatives. We lack data about the caregivers' perspective on the end-of-life (EOL) phase of GBM patients to improve counseling and support. In this study we investigated the experiences of 52 caregivers of deceased GBM patients treated in Austria. We used a questionnaire developed by the University Medical Centre of Amsterdam for exploration of the EOL-phase in glioma patients. The caregivers (17 men, 34 women) completed the questionnaire in median three years after the patients' death. 29 % of caregivers reported that they felt incompletely prepared for their tasks, however, those with higher education levels felt significantly better informed. 29 % suffered from financial difficulties, which was associated with burnout (60 %) and reduced quality of life (QOL). The patients' most common symptoms reported by caregivers were fatigue (87 %), reduced consciousness (81 %) and aphasia (77 %). 22 % of patients were bedbound during their last three months increasing to 80 % in the last week of life. The reported QOL of caregivers was very low and did not differ between caregivers of patients, who died at home (40 %) and caregivers of patients, who died in hospital (46 %). The caregiver reported that their QOL was only slightly better than the QOL they attributed to the patients. Furthermore, the high frequency of financial difficulties, burnout symptoms and feelings of insufficient information emphasize the urgent need for support and training dedicated to caregivers.
Northouse, Laurel L; Katapodi, Maria C; Song, Lixin; Zhang, Lingling; Mood, Darlene W
Family caregivers of cancer patients receive little preparation, information, or support to perform their caregiving role. However, their psychosocial needs must be addressed so they can maintain their own health and provide the best possible care to the patient. The purpose of this article is to analyze the types of interventions offered to family caregivers of cancer patients, and to determine the effect of these interventions on various caregiver outcomes. Meta-analysis was used to analyze data obtained from 29 randomized clinical trials published from 1983 through March 2009. Three types of interventions were offered to caregivers: psychoeducational, skills training, and therapeutic counseling. Most interventions were delivered jointly to patients and caregivers, but they varied considerably with regard to dose and duration. The majority of caregivers were female (64%) and Caucasian (84%), and ranged in age from 18 to 92 years (mean age, 55 years). Meta-analysis indicated that although these interventions had small to medium effects, they significantly reduced caregiver burden, improved caregivers' ability to cope, increased their self-efficacy, and improved aspects of their quality of life. Various intervention characteristics were also examined as potential moderators. Clinicians need to deliver research-tested interventions to help caregivers and patients cope effectively and maintain their quality of life.
Awadalla Abdel W
Full Text Available Abstract Background Research interest in the quality of life (QOL of persons with multiple sclerosis (MS has been spurred by the need to broaden outcome measures. Far less of this interest has been directed at the family caregivers, who bear most of the burden of care. The objectives of the study were: First, to compare the subjective QOL of family caregivers of persons with relapsing remitting and progressive MS, with those of a matched general population sample and caregivers of diabetes and psychiatric patients. Second, to assess the relationship of QOL with caregiver attitudes to MS and patient's variables. Methods Consecutive MS clinic attendees were assessed with the 26 – item WHOQOL Instrument, and for depression and disability. Similarly, caregivers independently rated their own QOL as well as their impression of patients' QOL and attitudes to patients' illness. Results The 170 caregivers, mean age 35.7 years, had no significant diagnostic differences in QOL domain scores and attitudes to MS. Caregivers had significantly lower QOL than the general population control group for five out of six domains and the general facet (P Conclusion Caregivers need specific attention if they are less educated, unemployed, afraid of having MS and caring for patients with longer duration of illness and less education. In particular, attention to patients' depression and disability could improve caregivers' QOL. Caregivers need specific programs to address fear of having MS, negative attitudes to illness and their unmet needs.
Stone, R I; Short, P F
The competing demands of work and elder care are the subject of this study. The employment decisions of the informal caregivers of a nationally representative sample of disabled elders were examined using a nested multinomial logit model. Findings from the work accommodation model demonstrated that primary caregivers and those caring for elders with greater care needs are more likely to take unpaid leave, reduce work hours, or rearrange their work schedules to assume elder care responsibilities. Being female, white, and in fair-to-poor health also increased the likelihood of work accommodation. The model predicting employment of a caregiver revealed that the prospect of having to accommodate work to the demands of caregiving keeps some people from work entirely. However, not all caregivers would choose to work in the absence of caregiving responsibilities. After controlling for the probability of work accommodation, need for care, and availability of others to care, it is more likely that younger, white and more highly educated caregivers will be employed. The self-selection of working caregivers observed in this study should be considered when forecasting changes in caregiving costs associated with changes in the labor force participation of caregivers as a result of deliberate policies or social and demographic trends.
Zhan, Heying Jenny
The Chinese cultural norm of xiao, or filial piety, has long been held responsible for the practice of familial caregiving for older parents. Yet few explore the gendered nature of such a cultural practice in the current changing economic dynamics. Using data collected in 1997-1999 from 110 Chinese caregivers who were caring for physically dependent elder parents, this researcher explores the influence of changing economic conditions and Chinese cultural values in caregiver task performance and reward. Findings suggest that Chinese caregiving is highly gendered: Women are more likely to be unemployed and provide more personal care than men; sons are not more likely than daughters to provide financial assistance for parents. Chinese cultural values are playing an important role sanctioning caregiver task performance. Caregivers who believed in patrilocal norms provided more financial assistance; caregivers who reported higher social pressure provided more personal care. While the caregivers' report of social pressure is positively related to the caregivers' performance in personal care tasks, it is negatively related to caregiver reward. The author further explores the gendered implications for the changing economy and culture in China.
Full Text Available Timothy Kwok,1,2 Alma Au,3 Bel Wong,1 Isaac Ip,1 Vivian Mak,1 Florence Ho11Jockey Club Centre for Positive Ageing, 2Department of Medicine and Therapeutics, Chinese University of Hong Kong; 3Department of Applied Social Sciences, Hong Kong Polytechnic University, Hong KongPurpose: Family caregivers of persons with dementia (PWD may receive caregiver training because of logistical constraints and privacy concerns. This study evaluated the effectiveness of an online intervention for family caregivers of PWD in improving their self-efficacy in managing behavioral and psychological symptoms of dementia (BPSD, and their emotion well-being.Subjects and methods: A total of 36 family caregivers of people with dementia participated in a 9-week online intervention based on the cognitive behavioral therapy model. Outcomes of the intervention were measured by the Chinese version of the Neuropsychiatric Inventory Questionnaire and two domains of the Revised Scale for Caregiving Self-Efficacy. Wilcoxon signed rank tests were used to compare the change in outcome variables.Results: The severity of BPSD of PWD and BPSD-related distress in family caregivers showed a statistically significant reduction after the intervention. Subgroup analysis showed self-efficacy in controlling upsetting thoughts significantly improved in caregivers of PWD at moderate to severe stages.Conclusion: Online cognitive behavioral therapy for family caregivers reduced BPSD of PWD and the related distress in their caregivers.Keywords: online intervention, dementia caregiver, emotional self-efficacy, BPSD
Arriaga, Patrícia; Pacheco, Catarina
This study investigated the effects of hospital Clown Doctors intervention on child and caregiver preoperative anxiety at the entrance to the surgery care unit and separation from caregivers. A total of 88 children (aged 4-12 years) were assigned to one of the following two groups: Clown Doctors intervention or control group (standard care).…
Full Text Available Context: The purpose of this research was to study family life of caregivers who provide primary care to children with Cerebral Palsy. Aim: To study the family activities, leisure and interaction of caregivers of children with Cerebral Palsy. Settings and Design: Study was conducted in Dept. of Physical Medicine and Rehabilitation, AIIMS, New Delhi. Methods and Material: Study sample consisted of 65 primary caregivers of children with Cerebral Palsy. Questionnaires about family activities, leisure and interaction from Family burden interview schedule were used. Descriptive statistics and multiple regressions were used for data analysis. Results: All three domains i.e. disruption of routine family activities, family leisure and family interaction were found to be disrupted in caregivers of children with Cerebral Palsy. Various factors like education of caregiver, total children, family income, duration of caregiving, speech disturbance in child, seizures and mental retardation were found to effect scores of disruption of family activities, leisure and interaction. Conclusions: Caregivers of children with Cerebral palsy experience disruption of family activities, leisure and interaction. For proper care of children caregiver’s family life should be taken care of. Healthcare providers should enhance support networks to encourage and promote normal family activities, leisure and interactions of caregivers.
Kliewer, Wendy; Cunningham, Jera Nelson; Diehl, Robyn; Parrish, Katie Adams; Walker, Jean M.; Atiyeh, Cynthia; Neace, Brooke; Duncan, Larissa; Taylor, Kelli; Mejia, Roberto
This short-term, longitudinal interview study used an ecological framework to explore protective factors within the child, the caregiver, the caregiver?child relationship, and the community that might moderate relations between community violence exposure and subsequent internalizing and externalizing adjustment problems and the different patterns…
Kenneth Ayuurebobi Ae-Ngibise
Full Text Available Background: Families and friends who give care to people with mental disorders (MDs are affected in a variety of ways and degrees. The interplay of caregiving consequences: poverty, discrimination and stigma, lack of support from others, diminished social relationships, depression, emotional trauma, and poor or interrupted sleep are associated caregiver burden. Objective: The burden of care on caregivers of people living with MDs was assessed in two districts located in the middle part of Ghana. Coping strategies and available support for caregivers of MDs were also assessed. Design: A qualitative study was carried out involving 75 caregivers of participants with MDs registered within the Kintampo Health and Demographic Surveillance Systems. Data were gathered from caregivers about their experiences in providing care for their relations with MDs. Results: Caregivers reported various degrees of burden, which included financial, social exclusion, emotional, depression, and inadequate time for other social responsibilities. Responsibilities around caregiving were mostly shared among close relatives but to a varying and limited extent. Religious prayers and the anticipation of cure were the main coping strategies adopted by caregivers, with expectation of new treatments being discovered. Conclusions: Emotional distress, stigma, financial burden, lack of support networks, social exclusion, health impact, and absence of decentralised mental health services were experienced by family caregivers. These findings highlight the need for interventions to support people with MDs and their caregivers. This might include policy development and implementation that will decentralise mental health care provision including psychosocial support for caregivers. This will ameliorate families’ financial and emotional burden, facilitate early diagnosis and management, reduce travel time to seek care, and improve the quality of life of family caregivers of persons
Wilz, Gabriele; Böhm, Birgit
After discharge from hospital most stroke patients are being cared for by relatives. In the majority of cases it does mean long-term demands for relatives and often it has also an effect on their health. There is a variety of possibilities for offering support to relatives in accomplishing their tasks and thus contribute to a relief of burden. There has not yet been enough research investigating how various intervention concepts really meet the needs of the relatives and how effective the interventions reduce the burden of the caregivers. Five types of intervention concepts for supporting relatives of stroke patients can be differentiated so far: special services, training, counselling, social support through other caregivers and multi-component interventions. On the basis of 42 intervention studies an attempt is being made to give a preliminary statement about the effectiveness of intervention models. The multi-component interventions combined with psychotherapeutic strategies seem to emerge as a recommendable concept.
Alberto Manuel Quintana
Full Text Available This study aimed to comprehend the meanings that parents/caregivers of children and adolescents diagnosed with cancer attribute to their child’s disease. It is a qualitative, exploratory/descriptive study. Data were collected through group discussions and individual interviews with the parents/caregivers of children/adolescents and categorized using content analysis. The impressions of the researchers were recorded in a field diary, contributing to the data analysis. The results indicate that the disease and treatment involve periods of psychological suffering that affect the family structure. Cancer was reported as a real enemy to be fought through coping or avoidance, which generates expectations about the future and causes feelings of fear, as well as hope. It was concluded that the childhood cancer causes repercussions in the family relationships, the recognition of which can contribute to both the preparation of professional teams who work with this population, as well as the public health policies developed.
Full Text Available Purpose. To determine the relationship between having a child with a DSD including ambiguous external genitalia, as well as the decision of whether or not to have early genitoplasty for that child, on the mental health and parenting characteristics of caregivers. Materials and Methods. Caregivers were recruited from centers that specialize in DSD medicine and completed the Beck Depression Inventory 2nd Edition (BDI-2, Beck Anxiety Index (BAI, Parent Protection Scale (PPS, Child Vulnerability Scale (CVS and Parenting Stress Index/Short Form (PSI/SF. Results and Conclusions. Sixty-eight caregivers provided informed consent and completed the study. Among female caregivers whose children never received genitoplasty, greater parenting stress was reported . For male caregivers, those whose children received genitoplasty within the first year of life reported more overprotective parenting and parenting stress than those whose children received genitoplasty later than 12 months of age ; , respectively.
study, we found caregivers who were interested to participate but would not be available for the nine weeks. We amended the protocol to condense the...of facility resources. (4) We “implemented” the program with fidelity to its protocol in both the active duty and veteran settings in the provision...Legacy of Caring.” 35th Annual Conference of the International Association for Human Caring. 26 May, 2014. Kyoto , Japan. Miner-Williams, D & Loomis
Senra, Margarida; Saraiva, Horácio; Pinheira, Vítor
INTRODUCTION: Sexuality in the elderly still remains a taboo, especially in the institutional context. Demographic changes have been occurring these past few years which led to an increase in the number of institutionalized elders, as an attempt to respond their needs. OBJECTIVES: This study aims to know the levels of knowledge and attitudes of the professional caregivers, how these are related and how these relate with the socio demographic variables. METHODS: Quantitative, ...
Judith T. Matthews
Full Text Available Health care providers typically rely on family caregivers (CG of persons with dementia (PWD to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86 who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers.
Taylor, Elizabeth Johnston
The purpose of this descriptive, cross-sectional, qualitative study was to describe the spiritual needs experienced in living with cancer from the perspective of patients with cancer and family caregivers. The sample included 28 African American and Euro-American patients with cancer and family caregivers receiving care from inpatient and outpatient units at two metropolitan hospitals in the southwestern United States. In-depth, tape-recorded, semistructured interviews were analyzed using the process of data reduction, data display, and verification. Seven categories of identified spiritual needs included needs associated with relating to an Ultimate Other; the need for positivity, hope, and gratitude; the need to give and receive love; the need to review beliefs, the need to have meaning; and needs related to religiosity and preparation for death. Informants responded with varying levels of awareness of personal spiritual needs. Caregivers were observed to have spiritual needs similar to those of patients. The findings of this study will inform nurses as they assess and document spiritual needs.
Jecker, Nancy S
This paper asks whether adult children have a duty of justice to act as caregivers for their frail, elderly parents. I begin (Sections I. and II.) by locating the historical reasons why relationships within families were not thought to raise issues of justice. I argue that these reasons are misguided. The paper next presents specific examples showing the relevance of justice to family relationships. I point out that in the United States today, the burden of caregiving for dependent parents falls disproportionately on women (Sections III. and IV.). The paper goes on to use Rawls' theoretical tool of the veil of ignorance to argue that caring for parents should not be linked to a person's sex and more generally, that there is no duty of justice to assume the role of caregiver for dependent parents (Sections V.). Although justice does not provide the moral foundations for parent care, I show that it nonetheless places important limits on the instinct to care. I conclude that the voice of justice should be audible, and is intrinsically present, within families.
Bier, J C; Van den Berge, D; de Wouters d'Oplinter, N; Bosman, N; Fery, P
Facing difficulties due to dementia syndromes, systemic care is necessary. Amongst therapies assessed specifically to caregivers, psychoeducative steps seem to be the strongest effective one on neuropsychiatrics symptoms. Psychoeducations tend to teach the caregivers to modify their interactions with patients via a better understanding of illnesses and patients. Our training "Pour mieux vivre avec la maladie d'Alzheimer", applied in groups of eight to twelve persons, consists in twelve sessions of two hours each. To assure the biggest possible availability, we recently incorporated the concomitant coverage of patients into artistic workshops. These sessions of art-therapy realized in parallel to our psychoeducative program will thus be estimated according to the same rigorous methodology. The critical evaluations realized by participants at the end of our program reflect the outcome of our main objective (to teach to modify interactions with the patients) while contributing to the improvement of social contacts and to the learning of calling to existing helps. These preliminary results strongly argue for the pursuit and even extension of this kind of caregiver's management.
Kim, Suk-Sun; Reed, Pamela G; Hayward, R David; Kang, Youngmi; Koenig, Harold G
The family spirituality-psychological well-being model was developed and tested to explore how spirituality influences psychological well-being among elders and caregivers in the context of Korean family caregiving. The sample consisted of 157 Korean elder-family caregiver dyads in Seoul, Korea. The intraclass correlation coefficient and the actor-partner interdependence statistical model were used to analyze the data. There were significant correlations between elders' and caregivers' spirituality and between elders' and caregivers' psychological well-being. Elders' and caregivers' spirituality significantly influenced their own psychological well-being. The caregiver's spirituality significantly influenced the elder's psychological well-being, but the elder's spirituality did not significantly influence the caregiver's psychological well-being. Findings suggest that elders' and caregivers' spirituality should be assessed within the family to provide holistic nursing interventions.
Clark, Patricia C
Hardiness is defined as commitment to life, viewing change as challenge, and having control over one's life. Previous research suggests that hardiness is related to better outcomes in stressful situations. The effects of individual and family hardiness on depression and fatigue of caregivers of disabled older adults (DA) were examined using a descriptive, cross-sectional design. The sample was 67 caregivers of DA with high functional impairment. One-third of caregivers reported moderate to high fatigue, and 40% had scores indicating possible clinical depression. Memory and behavior problems of the DA were positively correlated with caregiver depression and fatigue. Family hardiness was negatively related to memory and behavior problems of the DA. Controlling for covariates, individual hardiness was negatively associated with depression and fatigue; coping strategies did not mediate the relationship. Caregivers with low individual and family hardiness had more depression than those high in both resources. Additional research is needed to determine the relevance of hardiness theory in caregiving research.
Day, Jennifer R; Anderson, Ruth A
Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understanding compassion fatigue in the informal caregiver population. Limitations of the model when applied to this population were identified as traumatic memories and the emotional relationship between parent and child, suggesting areas for future research. Conclusions. Research is needed to better understand the impact of compassion fatigue on informal caregivers through qualitative interviews, to identify informal caregivers at risk for compassion fatigue, and to provide an empirical basis for developing nursing interventions for caregivers experiencing compassion fatigue.
Day, Jennifer R; Anderson, Ruth A; Davis, Linda L
Adult daughters face distinct challenges caring for parents with dementia and may experience compassion fatigue: the combination of helplessness, hopelessness, an inability to be empathic, and a sense of isolation resulting from prolonged exposure to perceived suffering. Prior research on compassion fatigue has focused on professional healthcare providers and has overlooked filial caregivers. This study attempts to identify and explore risk factors for compassion fatigue in adult daughter caregivers and to substantiate further study of compassion fatigue in family caregivers. We used content analysis of baseline interviews with 12 adult daughter caregivers of a parent with dementia who participated in a randomized trial of homecare training. Four themes were identified in adult daughter caregiver interviews: (a) uncertainty; (b) doubt; (c) attachment; and (d) strain. Findings indicated adult daughter caregivers are at risk for compassion fatigue, supporting the need for a larger study exploring compassion fatigue in this population.
Potter, Patricia; Olsen, Sarah; Kuhrik, Marilee; Kuhrik, Nancy; Huntley, Lance R
This feasibility study tested an instructional DVD program for improving cancer family caregivers' knowledge and preparedness in fall prevention and reducing fall occurrence among the patients they care for at home. DVD program features included training caregivers on safe mobility skills. Family caregivers of cancer patients were surveyed before and after viewing the DVD program on "Moving Safely" in the home. Cancer patients were followed 4 months postintervention to determine if fall occurrence was reduced. There was a decrease in the number of patients who fell postintervention compared with those who fell preintervention. Caregivers' perceptions of knowledge about fall prevention improved significantly after viewing the DVD. An instructional DVD program is an effective educational tool for preparing family caregivers with the knowledge and skills needed to reduce the incidence of falls in the home setting. Educators must develop programs for preparing family caregivers to perform nursing skills within the home.
Chung, Kyusuk; Essex, Elizabeth Lehr; Samson, Linda
We examined the level of hospice knowledge of caregivers of minority elderly hospice patients and determined how it influences the hospice enrollment decision and the decision on the use of hospice services after enrollment. Based on qualitative analysis of medical records and interviews with caregivers of minority elderly hospice patients who received personal care from paid caregivers (eg, other than family caregivers), we found that hospice knowledge increased access to hospice among minority patients who otherwise would not opt for hospice or enroll too late for comprehensive hospice care services. Furthermore, the highest level of knowledge-acquired through caregivers' health care occupations-appears to influence hospice care after hospice enrollment. Caregivers with that level of knowledge made requests for changes in site of care and/or additional services that may enhance the quality of hospice care that their loved ones receive.
Some experts contend that the increasing prevalence of obesity among patients and caregivers leads to more frequent and serious musculoskeletal injuries among caregivers. Others believe that failure to ensure safe, appropriate equipment and supporting policies leads to the increasing prevalence of caregiver injuries. Health facilities best serve residents, caregivers, and institutions when there is preplanning for extra care and resources; size-appropriate equipment; larger, heavier furniture; and adequate space to accomplish tasks. The challenge to stakeholders is to find ways to prevent injuries that pose direct and indirect cost liabilities to caregivers, institutions, policy makers, and others. Several strategies are available to reduce or prevent caregiver injury and to promote patient safety. Physical environment, equipment, lift team, and necessary policy changes are discussed as possible strategies.
Graça, Ágatha; Nascimento, Matheus Amarante do; Lavado, Edson Lopes; Garanhani, Márcia Regina
The aim of this study was to analyze quality of life of caregivers who are relatives of patients with spine cord injury (SCI). Fourteen women (seven caregivers and seven controls) were evaluated by the Medical Outcomes Study 36 - Item Short-Form Health Survey (SF-36) and the Caregiver Burden Scale (CBS) Questionnaires. The data from both questionnaires were compared using the Mann-Whitney U testing procedure for differences between caregivers and controls (p0.05), characterized by the percentage difference of 62%, 66.7%, 55%, 50%, 57% and 63% for tension, isolation, disappointment, emotional involvement, environment and overall score, respectively. The CBS questionnaire was more adequate for verifying quality of life of caregivers of SCI patients, and caregiving may have a negative impact on their quality of life.
Hall, Scott S; Kandiah, Jayanthi; Saiki, Diana; Nam, Jinhee; Harden, Amy; Park, Soonjee
Technological advances in monitoring vulnerable care-recipients are on the rise. Recent and future development of Smart Wear technology (devices integrated into clothing that monitor care-recipients) might assist family caregivers with tasks related to caring for young children, relatives with disabilities, and frail spouses or parents. However, the development and use of this technology in family caregiving contexts is in its infancy. Focus group interviews of family caregivers were conducted to explore perspectives regarding the potential integration of Smart Wear technology into their family caregiving. Responses were analyzed qualitatively for themes related to perceptions of how Smart Wear could impact relationships between caregivers and care-recipients. Three major themes emerged: quality and quantity of interaction, boundary issues, and implications for anxiety. Implications and recommendations are discussed regarding maximizing the potential benefits of Smart Wear technology in ways that promote and protect healthy relationships among caregivers and care-recipients.
Nogueira, Paula Cristina; de Carvalho Nagliate, Patrícia; de Godoy, Simone; Rangel, Elaine Maria Leite; Trevizan, Maria Auxiliadora; Mendes, Isabel Amélia Costa
Providing caregivers with health education through educational technologies enhances safe care; and stimulates the decision process and communication among professionals, caregivers and patients. This article is an integrative review to identify what educational technologies have been used for health education to caregivers. The databases Web of Science, Bireme and Scopus were consulted. The inclusion criteria are as follows: full papers, published between 2001 and 2011, in English, Portuguese or Spanish. The descriptors used are the following: educational technology, health education and caregivers. Thirty-four papers were found, 27 of which were excluded because they did not comply with the inclusion criteria, resulting in a final sample of 7 papers. The results evidenced the use of light and hard technologies in health education for caregivers, aimed at the therapeutic discussion of care as well as telehealth service delivery. Research is needed which uses and assesses the use of hard educational technologies in health education for caregivers.
Full Text Available The aim of this study was to analyze quality of life of caregivers who are relatives of patients with spine cord injury (SCI. Fourteen women (seven caregivers and seven controls were evaluated by the Medical Outcomes Study 36 - Item Short-Form Health Survey (SF-36 and the Caregiver Burden Scale (CBS Questionnaires. The data from both questionnaires were compared using the Mann-Whitney U testing procedure for differences between caregivers and controls (p0.05, characterized by the percentage difference of 62%, 66.7%, 55%, 50%, 57% and 63% for tension, isolation, disappointment, emotional involvement, environment and overall score, respectively. The CBS questionnaire was more adequate for verifying quality of life of caregivers of SCI patients, and caregiving may have a negative impact on their quality of life.
Full Text Available The aim of this study was to analyze quality of life of caregivers who are relatives of patients with spine cord injury (SCI. Fourteen women (seven caregivers and seven controls were evaluated by the Medical Outcomes Study 36 - Item Short-Form Health Survey (SF-36 and the Caregiver Burden Scale (CBS Questionnaires. The data from both questionnaires were compared using the Mann-Whitney U testing procedure for differences between caregivers and controls (p0.05, characterized by the percentage difference of 62%, 66.7%, 55%, 50%, 57% and 63% for tension, isolation, disappointment, emotional involvement, environment and overall score, respectively. The CBS questionnaire was more adequate for verifying quality of life of caregivers of SCI patients, and caregiving may have a negative impact on their quality of life.
Jennifer R. Day
Full Text Available Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understanding compassion fatigue in the informal caregiver population. Limitations of the model when applied to this population were identified as traumatic memories and the emotional relationship between parent and child, suggesting areas for future research. Conclusions. Research is needed to better understand the impact of compassion fatigue on informal caregivers through qualitative interviews, to identify informal caregivers at risk for compassion fatigue, and to provide an empirical basis for developing nursing interventions for caregivers experiencing compassion fatigue.
Day, Jennifer R.; Anderson, Ruth A.; Davis, Linda L.
Adult daughters face distinct challenges caring for parents with dementia and may experience compassion fatigue: the combination of helplessness, hopelessness, an inability to be empathic, and a sense of isolation resulting from prolonged exposure to perceived suffering. Prior research on compassion fatigue has focused on professional healthcare providers and has overlooked filial caregivers. This study attempts to identify and explore risk factors for compassion fatigue in adult daughter caregivers and to substantiate further study of compassion fatigue in family caregivers. We used content analysis of baseline interviews with 12 adult daughter caregivers of a parent with dementia who participated in a randomized trial of homecare training. Four themes were identified in adult daughter caregiver interviews: (a) uncertainty; (b) doubt; (c) attachment; and (d) strain. Findings indicated adult daughter caregivers are at risk for compassion fatigue, supporting the need for a larger study exploring compassion fatigue in this population. PMID:25259643
Sutter, Megan; Perrin, Paul B; Chang, Yu-Ping; Hoyos, Guillermo Ramirez; Buraye, Jaqueline Arabia; Arango-Lasprilla, Juan Carlos
This cross-sectional, quantitative, self-report study examined the relationship between family dynamics (cohesion, flexibility, pathology/ functioning, communication, family satisfaction, and empathy) and mental health (depression, burden, stress, and satisfaction with life [SWL]) in 90 dementia caregivers from Colombia. Hierarchical multiple regressions controlling for caregiver demographics found that family dynamics were significantly associated with caregiver depression, stress, and SWL and marginally associated with burden. Within these regressions, empathy was uniquely associated with stress; flexibility with depression and marginally with SWL; and family communication marginally with burden and stress. Nearly all family dynamic variables were bivariately associated with caregiver mental health variables, such that caregivers had stronger mental health when their family dynamics were healthy. Family-systems interventions in global regions with high levels of familism like that in the current study may improve family empathy, flexibility, and communication, thereby producing better caregiver mental health and better informal care for people with dementia.
Millings, A; Walsh, J.; Hepper, E.; O'Brien, M.
This cross-sectional, dyadic questionnaire study examined the contribution of romantic attachment and responsive caregiving to parenting style, investigating both gender and partner effects. One hundred and twenty-five couples with children aged 7 to 8 years completed measures of attachment styles, responsive caregiving toward partner, and parenting styles. Structural Equation Modeling was used to examine the intra- and interpersonal associations between romantic attachment, caregiving respon...
The chronic character of the liver cirrhosis and its severe complications, including the patient inability to take care of himself, makes recommendable the availability of a caregiver living with the patient. This caregiver should be able to recognize the usual disorders associated to the cirrhosis. Additionally, an adequate information about the dietary habits and other recommended measures is mandatory for both the caregiver and patient to keep under control all the complications which appe...
Bevans, Margaret F; Ross, Alyson; Wehrlen, Leslie; Klagholz, Stephen D; Yang, Li; Childs, Richard; Flynn, Sharon L; Remaley, Alan T; Krumlauf, Michael; Reger, Robert N; Wallen, Gwenyth R; Shamburek, Robert; Pacak, Karel
There is growing evidence linking caregiver stress with an increased risk for morbidity and mortality. While the emotional and practical burden experienced by caregivers is well established, the physiological changes that may affect the caregiver's health are less understood. This study sought to compare self-reported stress, anxiety and depression along with neuroendocrine and immune markers of stress among adult caregivers of allogeneic hematopoietic stem cell transplantation patients during the acute transplant recovery period to matched non-caregivers controls. Biomarkers and self-reported data were collected at three points during the patient's HSCT: (1) before transplant, (2) after initial transplantation discharge (±7 days) and (3) 6 weeks after initial transplantation discharge. Mixed linear modeling was used to examine differences by group and time. Twenty-one caregivers and 20 controls completed all study procedures. The majority of caregivers were female (57% or 57.1%) and married (95.2%), with a mean age of 52 ± 11.4 years. Caregiver perceived stress, anxiety and depression scores were significantly higher than controls (p 0.05) for either group. Caregivers had significantly lower serum cortisol levels than controls at both discharge (p = 0.013; ES = 0.81) and 6 weeks after discharge (p = 0.028; ES = 0.72) but exhibited no significant relationship between self-reported stress and serum cortisol. In addition, caregivers showed a significant inverse relationship between stress and epinephrine levels (r(s)=-0.654, p = 0.021). These findings support the evidence of the caregiving experience being stressful. The counter-intuitive relationship between cortisol and epinephrine might suggest dysregulation of the HPA axis and central nervous system but additional research on the physiological impact of caregiving is warranted.
Koschorke, Mirja; Padmavati, R; Kumar, Shuba; Cohen, Alex; Weiss, Helen A; Chatterjee, Sudipto; Pereira, Jesina; Naik, Smita; John, Sujit; Dabholkar, Hamid; Balaji, Madhumitha; Chavan, Animish; Varghese, Mathew; Thara, R; Patel, Vikram; Thornicroft, Graham
Stigma associated with schizophrenia significantly affects family caregivers, yet few studies have examined the nature and determinants of family stigma and its relationship to their knowledge about the condition. This paper describes the experiences and determinants of stigma reported by the primary caregivers of people living with schizophrenia (PLS) in India. The study used mixed methods and was nested in a randomised controlled trial of community care for people with schizophrenia. Between November 2009 and October 2010, data on caregiver stigma and functional outcomes were collected from a sample of 282 PLS-caregiver dyads. In addition, 36 in-depth-interviews were conducted with caregivers. Quantitative findings indicate that 'high caregiver stigma' was reported by a significant minority of caregivers (21%) and that many felt uncomfortable to disclose their family member's condition (45%). Caregiver stigma was independently associated with higher levels of positive symptoms of schizophrenia, higher levels of disability, younger PLS age, household education at secondary school level and research site. Knowledge about schizophrenia was not associated with caregiver stigma. Qualitative data illustrate the various ways in which stigma affected the lives of family caregivers and reveal relevant links between caregiver-stigma related themes ('others finding out', 'negative reactions' and 'negative feelings and views about the self') and other themes in the data. Findings highlight the need for interventions that address both the needs of PLS and their family caregivers. Qualitative data also illustrate the complexities surrounding the relationship between knowledge and stigma and suggest that providing 'knowledge about schizophrenia' may influence the process of stigmatisation in both positive and negative ways. We posit that educational interventions need to consider context-specific factors when choosing anti-stigma-messages to be conveyed. Our findings suggest
Full Text Available Abstract Background Successful treatment of HIV-positive children requires a high level of adherence (at least 95% to highly active antiretroviral therapy. Adherence is influenced by factors related to the child and caregivers. Objectives To evaluate children and caregivers characteristics associated to children's adherence. Methods Cross-sectional study, from September 2013 to June 2015, comprising a sample of caregivers of perinatally HIV-infected children, in the age group of 1–12 years, under antiretroviral therapy for at least 6 months and on follow-up in two AIDS reference centers in Salvador, Bahia. Caregiver self-reports were the sole source of 4 days adherence and sociodemographic information. Study participants who reported an intake >95% of prescribed medication were considered adherents. A variable, (“Composed Adherence”, was created to better evaluate adherence. Results We included 77 children and their caregivers. 88.3% of the caregivers were female, the median age was 38.0 years (IQR 33.5–47.5, 48.1% were white or mixed, 72.7% lived in Salvador and 53.2% had no fixed income. The 4 days child's adherence was associated only to caregivers that received less than a minimum salary (p < 0.05, 70.1% of the caregivers had less than four years of formal education, 81.8% were children's relative and 53.2% of the caregivers were HIV positive. The caregiver's pharmacy refill, long-term adherence and 4 days adherence, were significantly associated with composed adherence (p < 0.05. Child's long-term adherence was strongly associated to the 4 days child's adherence referred by caregiver (p < 0.001. Conclusions Our results suggest the need of improvement in HIV-infected children adherence, through reinforcement of the caregivers own adherence.
Harding, Richard; Gao, Wei; Jackson, Diana; Pearson, Clare; Murray, Joanna; Higginson, Irene J
CONTEXT: Measurement and improvement of informal caregiver burden are central aims of policy and intervention. Burden itself is a complex construct and total burden can differ by patient diagnosis, although how diagnosis affects different aspects of caregiver subjective burden is unclear.OBJECTIVES: To compare the subjective burden of caregivers across three diagnostic groups using the 22-item Zarit Burden Inventory (ZBI).METHODS: We performed a secondary analysis of pooled cross-sectional da...
Griffin, Joan M; Lee, Minji K; Bangerter, Lauren R; Van Houtven, Courtney Harold; Friedemann-Sánchez, Greta; Phelan, Sean M; Carlson, Kathleen F; Meis, Laura A
Veterans who survive multiple traumatic injuries, including traumatic brain injuries (TBI), must often rely on family caregivers for ongoing care and support with reintegration. Understanding factors associated with caregiving that help or harm caregivers' health is critical for identifying appropriate and effective interventions that support caregiver health and promote the provision of quality care to veterans. This study utilized cross-sectional data from the Family and Caregiver Experiences Study, a survey of 564 caregivers caring for veterans who served after September 11, 2001, survived TBI/polytrauma during service, and received inpatient rehabilitation care in a Veterans Affairs Polytrauma Rehabilitation Center. Structural equation modeling was used to examine the relationship between caregiver stress (i.e., veterans' neurobehavioral problems and intensity of care required), and caregiver well-being (i.e., caregiver burden and mental health). Analyses also examined how intrapersonal, family or social, and financial resources mediate and moderate the relationship between caregiver stress and well-being. Results indicate that veterans' neurobehavioral problems and intensity of required care were associated with more caregiver burden, and more burden was associated with poor mental health. Intrapersonal and family or social resources mediated the relationship between veteran functioning and mental health. Family or social resources also moderated the relationship between care intensity and burden. The model explained a moderate amount of variability in burden (59%) and a substantial amount in mental health (75%). We conclude that caregivers of veterans with neurobehavioral problems who require intense care are at risk for burden and poor mental health. Increasing resources to bolster family or social resources may reduce risks. (PsycINFO Database Record
Full Text Available Background: "Caregiver Burden" is actually an expression addressing the adverse consequences of the care provided to the patients′ with dementia. Review of the previous studies reveals a higher rate of depression and anxiety among the caregivers as compared to the general population. This study has been designed to evaluate the caregiver burden and then the factors influencing it among caregivers of patients with dementia in Iran. Methods: In this cross-sectional study, 153 patients and their caregivers registered in the Memory Clinic in Roozbeh Hospital and Iranian Alzheimer Association (IAA were included. Data collection scales were Iranian Version of Caregiver Burden, Global Deterioration scale and Barthel index. Multiple linear regression model was applied to determine the factors influencing the caregiver burden. Results: Out of the 153 patients, 90 were male. The mean age calculated for the patients and the caregivers was 77.1 and 53, respectively. The mean of caregiver burden was 55.2. Three variables, gender (P<0.01, education of the patient (P<0.005 for illiterate patients, and the patient′s dependence on the caregiver for his/her daily tasks (P<0.000 were correlated with a high level of burden on the caregiver. The recommended model explains 0.664% of the variance of the outcome variable. Conclusion: Presence of either moderate or higher levels of burden (58-116 in more than 50% of the caregivers of these patients′ highlights the need for more attention from health policy makers in Iran. Promoting the level of caregivers′ quality of life along with enabling the patients in performing their daily tasks in order to reduce the imposed burden on caregivers′ is recommended.
Stenberg, Una; Cvancarova, Milada; Ekstedt, Mirjam; Olsson, Mariann; Ruland, Cornelia
This study investigated levels of symptoms, caregiver burden, and changes over time in 278 family caregivers (FC) of cancer patients. FCs experienced high levels of depressive symptoms and sleep disturbance, low levels of fatigue, and low to moderate levels of caregiver burden, yet these symptoms remained relatively stable over time. Being female and not being employed were factors associated with an increased risk of symptoms and caregiver burden. The understanding evolving from this study can enhance social- and health care professionals' awareness of FCs' challenging situation and the potential impact this has on the FCs' ability to provide care to the patient.
Fletcher, Barbara A Swore; Schumacher, Karen L; Dodd, Marylin; Paul, Steven M; Cooper, Bruce A; Lee, Kathryn; West, Claudia; Aouizerat, Bradley E; Swift, Patrick S; Wara, William; Miaskowski, Christine
Predictors of and trajectories for evening and morning fatigue were evaluated in family caregivers of oncology patients using hierarchical linear modeling. Evening fatigue trajectory fit a quadratic model. Predictors included baseline sleep disturbances in family caregivers and baseline evening fatigue in patients. Morning fatigue trajectory fit a linear model. Predictors were baseline trait anxiety, levels of perceived family support, and baseline morning fatigue in patients. Findings suggest considerable inter-individual variability in the trajectories of evening and morning fatigue. Evaluating family caregivers for sleep disturbance, anxiety, and poor family support, as well as high levels of patient fatigue, could identify those family caregivers at highest risk for sustained fatigue trajectories.
Full Text Available Objectives: The PEAR (pleasant events-activity restriction model has been proposed as a way of understanding leisure effects on dementia caregivers' distress. Considering both the PEAR model and the stress and coping model, the purpose of this study was to analyze the potential of both frequency and satisfaction with leisure to explain caregivers' distress (depression, anxiety and perceived health, risk of institutionalization of the care recipient, caregivers' stressors and resources variables (rumination and cognitive reappraisal in 275 caregivers. Methods: The sample was divided in four groups based on caregivers' scores on frequency and satisfaction with leisure: LFLS = Low frequency + low satisfaction; LFHS = Low frequency and high satisfaction; HFLS = High frequency + low satisfaction; HFHS = High frequency + high satisfaction. Results: Results indicated that while caregivers from the HFHS group showed a generally more positive profile on resources variables, health outcomes and lower levels of risk of institutionalization compared with the other groups, caregivers from the LFLS group used significantly less adaptive emotional regulation strategies and showed worse consequences on health outcomes. Discussion: The results of this study suggest the importance of considering caregivers' profile on frequency and satisfaction with leisure in order to understand caregiving distress.
Vérez Cotelo N
Full Text Available Objectives: To evaluate the profile of family caregivers of Alzheimer´s disease patients, identify any signs of psychopathology, quantify the level of perceived burden on the caregiver, and determine the caregiver’s relationship with their pharmacist. Methods: A cross-sectional study was conducted at a community pharmacy in Pontevedra, Spain. Demographic variables were collected, and the following questionnaires were administered: the Beck Depression Inventory-II, STAI-Anxiety Questionnaire, Zarit Burden Scale, family APGAR scale, and the Duke-UNC questionnaire. Results: The typical caregiver profile consists of a 55-year old first degree relative (mostly daughters with a primary education who belongs to a functional or mildly dysfunctional family. Nearly one quarter (24% of caregivers had a high perception of burden, with anxiety in 20% of caregivers and symptoms of depression in 20%. Family caregivers usually went to the same pharmacy as the patients (96%, were treated with psychotropic drugs (68%, and interacted with the pharmacist (92%. Conclusion: This study confirmed that psychological distress and burden is present among family caregivers. Care for caregivers should be integrated into patient care as part of a national plan, including grants and subsidies, which will result in better care of Alzheimer's patients. Pharmacists are the most accessible health care professionals and can provide information about Alzheimer's disease management to caregivers to ease the burden of care.
Burgener, S C; Jirovec, M; Murrell, L; Barton, D
This study describes the relationship between caregiver and elder behavior in institutionalized, cognitively impaired, elderly persons. A repeated-measures design was used to observe interactive behaviors between caregivers and demented elders within three caregiving situations (dressing, toileting, and bathing) and an interpersonal contact in two long-term care facilities. During observations, the caregiver's behaviors were rated using the Interaction Behavior Measure and Health Professional's-Geriatric Patient Behavior Rating scale, whereas the elder's behaviors were rated using a modified version of the Interaction Behavior Measure. The study included 116 subjects (58 elders and 58 caregivers), with each unique caregiver/elder pair being observed in the four situations. All elder behaviors varied according to situation type, with the most difficult elder behaviors occurring during bathing. Ten of the 12 caregiver behaviors included in the analysis varied by situation type. Significant relationships were systematically found between the caregiver's relaxed and smiling behavior and the elder's calm/functional behaviors, r = .42 (dressing) to r = .46 (toileting) for caregiver relaxed behavior and r = .34 (bathing) to r = .58 (dressing) for smiling. The elder's behavior did not vary by type of nursing unit (special dementia unit or general nursing unit), or interruptions to the interaction.
Marieke Van Puymbroeck
Full Text Available Family and friends who provide unpaid care to an individual with a disease or disability (known as informal caregivers experience numerous threats to their physical health as a result of providing care. In spite of evidence that participation in physical and leisure activities can be health promoting, informal caregivers have reported diminished or completely absent leisure participation. Hatha yoga has documented therapeutic benefits, including reduced anxiety, as well as improved muscle strength and endurance and flexibility. The purpose of this study was to determine the feasibility of conducting an 8-week yoga program with informal caregivers, and to gather pilot data on the effects of yoga on the physical fitness and coping of informal caregivers. Caregivers were randomized into a yoga intervention (n = 8 or control group (n = 9. The yoga sessions were 2.5 hours/week for 8 weeks and consisted of a variety of pranayama (breathing and asana (postures activities and were led by a certified yoga instructor. Four caregivers (two in each group dropped out of the study. After the conclusion of the 8-week yoga program, lower body strength increased significantly for those in the yoga group and other notable trends occurred in terms of coping, upper body strength and aerobic endurance. Caregivers in the control group experienced an unexpected increase in lower body flexibility. These findings indicate that caregivers in a yoga program may receive some benefits. Future studies are encouraged to test the efficacy of yoga as an intervention for caregivers.
Koehler, Alana D; Fagnano, Maria; Montes, Guillermo; Halterman, Jill S
To evaluate how having a child with both persistent asthma and a developmental disability (DD) affects caregiver burden and quality of life (QOL). 3-10 year old children with persistent asthma in urban Rochester, NY. Cross-sectional baseline survey (2006-2009). Parent report of autism spectrum disorder or other behavioral disorder requiring medication. Caregiver burden and QOL as measured by scores on previously validated depression, parenting confidence, and asthma-related QOL scales as well as an assessment of competing demands on the caregiver. Bivariate and multivariate regression analyses controlling for caregiver age, education, marital status, race, ethnicity, and child asthma symptom severity. We enrolled 530 children as part of a larger study (response rate: 74; 63 % Black, 73 % Medicaid). Of this sample, 70 children (13 %) were defined as having a DD. There were no differences in asthma symptom severity between children with and without a DD diagnosis. However, even after adjusting for potential confounders, caregivers of children with a DD reported worse scores on the depression (p = .003), parenting confidence (p asthma-related QOL (p = .035) compared to caregivers of typically developing children with asthma. Despite having similar asthma symptom severity, caregivers of children with both persistent asthma and a DD diagnosis report more burden and lower QOL compared to that of caregivers of typically developing children and persistent asthma. Further attention to this subgroup is needed to promote optimal support for caregivers.
Greenley, Rachel Neff; Josie, Katherine Leigh; Drotar, Dennis
This study examined patterns of agreement versus disagreement in family perceptions of caregiver and youth involvement in asthma management tasks and associations of these patterns with youth asthma outcomes. Fifty-six caregiver-child dyads completed questionnaires of family involvement in asthma management and asthma health outcomes (i.e., symptom days, health care utilization, and medication adherence). Discrepancies were documented for perceptions of both caregiver and youth involvement. Caregiver overestimation of youth involvement in asthma management was associated with greater asthma severity and more asthma symptoms. Discrepancies in family perceptions of involvement pose salient challenges for effective clinical management and require clinical attention.
Anil K. Mishra
Full Text Available As life expectancy increases, India will face enormous socioeconomic burden to meet the costs of integrated rehabilitation of subjects with stroke. Caring for stroke patients leads to caregiver (CG strain and financial burden. The CG burden is perceived differently in the Indian background depending on the society and culture. Caregiving stress has the potential to hamper rehabilitation of the patients and is of vital importance both as a research topic and the focus of clinical care. Cost and burden of informal care giving are high rural Indian community. Financial stress was prominent and common among the socioeconomically weaker division. The financial costs associated with family caregiving were a significant factor in caregiving burden, both for the male and female caregivers. Despite the high financial burden, limited recent studies have focused on costs associated with stroke in the India. Establishing total stroke-related costs is essential to evaluate and support the health economic research on stroke systems of care. Stroke care giving studies may help to better understand care giving impact, and also to find the most effective interventions to improve the quality of life of stroke patients and their caregivers, reduce the burden and depression of caregivers. Policies and programs to alleviate the financial burden and to provide social and financial support for these family caregivers are equally important for both family caregivers and their care receivers. [Int J Res Med Sci 2016; 4(9.000: 3675-3678
Gulin, Shaina L; Perrin, Paul B; Stevens, Lillian F; Villaseñor-Cabrera, Teresita J; Jiménez-Maldonado, Miriam; Martínez-Cortes, Ma Luisa; Arango-Lasprilla, Juan Carlos
Research has documented the deleterious effects on caregivers of providing care for an individual with traumatic brain injury (TBI). TBI caregivers in Mexico specifically have reduced health-related quality of life (HRQOL) across both physical and mental health domains. The purpose of the current study was to uncover the system of connections between Mexican TBI caregivers' HRQOL and their mental health. A cross-sectional survey was conducted at a public medical facility in Guadalajara, México. Ninety family caregivers of individuals with TBI completed measures of HRQOL, satisfaction with life, depression, and burden. A canonical correlation analysis revealed that the better the caregivers' HRQOL, the better their mental health was, with the effect reaching a large-sized effect. A distinct pattern emerged linking caregivers' higher energy levels and better social functioning to lower depression and greater satisfaction with life. A series of multiple regressions similarly uncovered that the most robust independent HRQOL predictors of caregiver mental health were vitality and social functioning. Especially for TBI caregivers with poor health, behavioral health interventions in Latin America that target the HRQOL domains of social functioning and vitality may significantly improve caregiver mental health, and as a result, informal care for TBI.
Kershaw, Paul; Harkey, Tammy
The authors examine the politics of caregiving for identity to enrich scholarship about power. They report on a qualitative study with Aboriginal mothers who parent in the wake of the Canadian Indian residential schools (IRS). Just as this system disrupted familial caregiving to assimilate Aboriginal Peoples, data show some mothers now strive to organize their caregiving in ways that serve decolonization and community empowerment. Building on their expertise, the authors argue that counter-colonial family policy investments to support such caregiving should factor in any just compensation for the IRS system if its population, and not just individual, costs are to be redressed.
Sun, Fan-Ko; Chiang, Chun-Ying; Chen, Wei-Jen; Wang, Ruey-Hsia; Huang, Hui-Man; Lin, Hung-Yen
Suicide caring competence is important for family caregivers to care their relatives with suicidal tendencies. The purpose of this study was to develop and test the psychometric properties of the Suicide Caring Competence Scale (SCCS) for family caregivers in Taiwan. A 20-item SCCS was tested on 165 family caregivers. Confirmatory factor analysis indicated that five subscales with 19 items best fit the data. The Cronbach's α and test-retest reliability of the SCCS was 0.90 and 0.81, respectively. The SCCS demonstrated acceptable construct validity and reliability. Nurses can use the SCCS to assess the suicide caring competence of family caregivers.
Parker Oliver, Debra; Demiris, George; Wittenberg-Lyles, Elaine; Porock, Davina; Collier, Jacqueline; Arthur, Antony
This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.
Ruth Molina Fuillerat
Full Text Available In January 2005 the Andalusian Health Service Improvement Plan prepared: Caring for the Caregiver include actions to be taken to promote equity, to recognize and facilitate the work of family carers. From our perspective of formal caregivers, it seems necessary to consider not only themselves need care patients with the disease, but also makes it mandatory caring individuals usually relatives, facilitators of the provision of care. In the Unit of Neurology, the daily observation of these family situations, has guided and network relationship between the two formal and informal systems of care, and we have tried the approach of the caregivers as clients to treat them as co-participants the experience of caring. Hypothesis: The Implementation of Functional Plan caregiver positive impact on hospitalization decreased anxiety and improved quality of life of caregivers of a dependent patient. Overall objective: To determine the effect of applying functional caregiver Plan on anxiety and quality of life of family caregivers of dependent people with neurological disorders. Study Design: Experimental study of the clinical trial such an intervention group and a control group randomly assigned.
Philip C Higgins
Full Text Available PURPOSE: End-of-life (EOL measures are limited in capturing caregiver assessment of the quality of EOL care. Because none include caregiver perception of patient suffering or prolongation of death, we sought to develop and validate the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL scale to include these dimensions of caregiver-perceived quality of EOL care. PATIENTS AND METHODS: Data were derived from Coping with Cancer (CwC, a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N = 275 dyads. Caregivers were assessed before and after patient deaths. CEQUEL's factor structure was examined; reliability was evaluated using Cronbach's α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. RESULTS: FACTOR ANALYSIS REVEALED FOUR DISTINCT FACTORS: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52-0.78. 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (ρ = .13; p≤.05 and hospice enrollment (z = -2.09; p≤.05, and negatively associated with bereaved caregiver regret (ρ = -.36, p≤.001 and a diagnosis of Posttraumatic Stress Disorder (z = -2.06; p≤.05. CONCLUSION: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.
Hammar, Lena Marmstål; Emami, Azita; Engström, Gabriella; Götell, Eva
It is well known that persons with dementia (PWD) have problems expressing and interpreting communication, making interaction with others difficult. Interaction between PWD and their caregivers is crucial, and several strategies have been investigated to facilitate communication during caregiving. Music therapeutic caregiving (MTC)--when caregivers sing for or together with PWD during caregiving activities--has been shown to enhance communication for PWD, evoking more vitality and positive emotions. The aim of this study was to describe how PWD and their caregivers express verbal and nonverbal communication and make eye contact during the care activity 'getting dressed', during morning care situations without and with MTC. Findings revealed that during the situations without MTC, the caregivers led the dressing procedure with verbal instructions and body movements and seldom invited the PWD to communicate or participate in getting dressed. Patterns in responses to caregivers' instructions included both active and compliant responses and reactions that were resistant and aggressive, confused, and disruptive. In contrast to the 'ordinary' morning care situation, during MTC, the caregivers seemed interested in communicating with the PWD and solicited their mutual engagement. Although verbal communication consisted of singing about things other than getting dressed, e.g. dancing, love, sailing, God, the PWD mostly responded to caregivers in a composed manner, by being active, compliant, and relaxed, though some were also resistant or incongruent. The authors conclude that MTC could be a way for PWD and their caregivers to successfully interact and co-operate during caring situations, as it seems to evoke enhanced communication for both partners in this context.
Full Text Available IntroductionAlthough research has shown that many cancer patients report positive life changes following cancer diagnosis, there are few data in the literature related to PTG in caregivers of cancer patients. However, the few studies available have shown that this kind of positive changes can also be experienced by family members. The aims of this study were to explore PTG in caregivers of cancer patients and to investigate correlations between the Posttraumatic growth, psychological status and QoL of caregivers and those of patients, taking into account also clinical and socio-demographic aspects.Methods We enrolled 60 patient/caregiver pairs in the Department of Medical Oncology of the National Research Center ‘Giovanni Paolo II’ in Bari. Both patients and caregivers were assessed using the following scales: Posttraumatic growth Inventory (PTGI; Hospital anxiety and depression scale; Short Form (36 Health Survey (SF-36; ECOG Performance Status. Clinical and socio-demographic data were collected. ResultsCaregivers showed significantly higher scores than patients in the dimension of personal strength. Furthermore, we found a significantly close association between anxiety and depression of caregivers with those of patients. Younger caregivers were better than older ones in terms of physical activity, vitality, mental health, and social activities. Although the degree of relationship with the patient has no significant effect on the dependent variables of the study, it was found that caregivers with a degree of kinship more distant to the patient have less physical pain than the closest relatives.ConclusionResults of the present study show that caregivers of cancer patients may experience post-traumatic growth as the result of their caregiver role. It would be interesting to investigate in future research which factor may mediate the presence of post-traumatic growth.
van den Tweel, Xandra W; Hatzmann, Janneke; Ensink, Elske; van der Lee, Johanna H; Peters, Marjolein; Fijnvandraat, Karin; Grootenhuis, Martha
Caring for a child with sickle cell disease poses extra demands on parents, both practically and psychologically, which may influence their quality of life. Since families of children with sickle cell disease in the Netherlands usually belong to immigrant communities with a low socio-economic status, there may be an additional strain on caregivers. The aim of the present study was to evaluate the quality of life of caregivers of children with sickle cell disease. The quality of life of female caregivers of sickle cell disease patients, measured with the TNO-AZL Adult Quality of Life questionnaire, was compared to the norm data of healthy Dutch females (n=700) and female caregivers of healthy children with the same socio-economic status and ethnic background (socio-economic status control group). Groups were compared by the Mann-Whitney U test. Point estimates and 95% confidence intervals of the median difference are presented. The results of questionnaires of 54 caregivers of children with sickle cell disease and 28 caregivers of a control group of the same socio-economic status were analyzed. Caregivers of patients with sickle cell disease had a significantly lower quality of life on all subscales compared to the Dutch norm population. Compared to the control group of the same socio-economic status, the quality of life of caregivers of patients with sickle cell disease was significantly lower on the subscales depressive moods, daily activities and vitality. In this first study reporting on the quality of life of caregivers of children with sickle cell disease, we demonstrate a reduced quality of life in these caregivers compared to the healthy Dutch female population and caregivers of healthy children with the same socio-economic status.
Gormally, S; Barr, R G; Wertheim, L; Alkawaf, R; Calinoiu, N; Young, S N
To understand how the 'caregiving context' could affect responses to procedural pain, the authors sought to determine whether (1) the combined effects of sweet taste and holding (caregiving contact) were greater than the effects of either alone, (2) any combined effects were additive or interactive, and (3) the interventions had similar effects on behavioral (crying and facial activity) and physiological (heart rate, vagal tone) responses to the heel-stick procedure in newborn infants in a randomized two-factorial intervention trial. Eighty-five normally developing newborn infants were studied with a mean gestational age of 39.4 weeks on the 2nd or 3rd day of life. Infants were randomized in blocks of eight to receive (1) no holding and water taste (control participants), (2) no holding and sucrose taste (sucrose group), (3) holding and water taste (holding group), or (4) holding and sucrose taste (holding and sucrose group). Crying was reduced significantly by taste and holding, and the interventions combined additively. Facial activity was only significantly reduced by holding. For physiological measures, the interventions interacted with each other and preintervention levels to reduce heart rate and lower vagal tone more during the procedure in infants in whom heart rate and vagal tone were higher before intervention. Consequently, sweet taste and holding interventions combined in complex ways when acting on different behavioral and physiological response systems to modify stressful pain experiences. The results suggest that providing a caregiving context when painful procedures are performed may be a simple and practical method of reducing pain experience in infants, and that no one measure captures these effects.
Rondi, Céline; Berney, Alexandre
The use of social media as a communication tool is rapidly growing in the community, and more specifically in patients, through illness blogs. This has been true for several years in North America, but is becoming a reality in Europe as well. We report here the first results of studies on the putative psychological benefits and risks of illness blogs for their authors. We also explore the possible impact of blogging on the patient-caregiver relationship. Social media are expected to have a growing influence in certain areas of health care. Physicians should therefore stay informed about them, take advantage of their benefits, and anticipate their risks.
Cook, Ellen K
Client education and patient well-being should be primary goals and responsibilities for practicing avian veterinarians. Time is limited in the normal clinical appointment setting. However, this opportunity can still be used to introduce clients to the basics of training with positive reinforcement. These methods build a healthy relationship of trust between caregivers and their birds. Within the allotted appointment time, it is possible to teach clients how to train a simple behavior. This article outlines and demonstrates how training avian patients is successfully applied in a typical clinical practice.
Knibbe, Mare; Maeckelberghe, Els; Verkerk, Marian; Weimar, W; Bos, MA; Busschbach, JJ
The family of a child in need of a transplant has a double role. It has a role of patient on the one hand, receiving professional care, and of caregiver on the other hand, sharing responsibility with the medical caregivers. In order to reflect on the complex intertwining of responsibilities connecte
Reich, S.; Bickman, L.; Heflinger, C. A.
Increasingly, professionals are recognizing the need to involve parents and other caregivers in the mental health treatment of children. However, parents and caregivers may not feel efficacious when participating in mental health care. Self-efficacy is a mechanism of human agency that describes people's beliefs about their capabilities to exercise…
van den Heuvel, ETP; de Witte, LP; Schure, LM; Sanderman, R; Meyboom-de Jong, B
Objective: To identify which caregivers of stroke patients living at home experience the highest levels of strain and are at risk of burn-out, and to investigate how support for caregivers of stroke patients could best be organized, and when this support should be offered. Design and setting: Caregi
Boaventura, Luiz Carlos; Borges, Heloise Cazangi; Ozaki, Armando Hitoshi
The scope of this study was to evaluate factors that influence the burden of adult wheelchair-bound patients with neurological alterations on informal caregivers. Sixteen informal caregivers of adult wheelchair-bound patients with neurological alterations were evaluated, using the Zarit Burden Interview (ZBI) scale to evaluate the burden on caregivers, as well as gather data on the care and socio-demographic profile of the caregivers, on the socio-economic data and the degree of functional independence of adult wheelchair-bound patients with neurological alterations. Student's t-test, the one-way ANOVA with Tukey method and Pearson's product moment correlation coefficient were used for data analysis. The results associated lower education level of the caregiver (p = 0.01) and lower level of information of the affected pathology (p-value = 0.01) to a heavier burden on the caregiver. The therapeutic and social support provided by the support institutions, such as the Physiotherapy Clinic/School of CEUNSP, was revealed as being important to help caregivers to handle situations in an easier manner. Understanding the factors that influence the burden on the caregiver is important for planning and intervention for this specific population group.
Epstein, Richard A.; Jordan, Neil; Rhee, Yong Joo; McClelland, Gary M.; Lyons, John S.
We studied 9,220 children referred to a comprehensive mental health crisis stabilization program to examine the impact of caregiver capacity on crisis worker decisions to refer children for intensive community-based treatment as opposed to inpatient psychiatric hospitalization. Due to the different role of caregivers in the child welfare system,…
Harris, Grant M.; Durkin, Daniel W.; Allen, Rebecca S.; DeCoster, Jamie; Burgio, Louis D.
Purpose: Exemplary care (EC) is a new construct encompassing care behaviors that warrants further study within stress process models of dementia caregiving. Previous research has examined EC within the context of cognitively intact older adult care recipients (CRs) and their caregivers (CGs). This study sought to expand our knowledge of quality of…
Much research examines the professional nursing practices of traditional and modern caregivers, but it remains unclear whether the delivery of extra-required services is diminished as the caregiver moves from traditional to modern community. Building on the classical works of sociologists Ferdinand Tonnies, Max Weber, and Emile Durkheim, this…
Hullmann Stephanie E
Full Text Available Abstract Background The current study sought to compare levels of overprotection and parenting stress reported by caregivers of children with disorders of sex development at four different developmental stages. Methods Caregivers (N = 59 of children with disorders of sex development were recruited from specialty clinics and were asked to complete the Parent Protection Scale and Parenting Stress Index/Short Form as measures of overprotective behaviors and parenting stress, respectively. Results Analyses of covariance (ANCOVAs were conducted to examine differences between caregiver report of overprotection and parenting stress. Results revealed that caregivers of infants and toddlers exhibited more overprotective behaviors than caregivers of children in the other age groups. Further, caregivers of adolescents experienced significantly more parenting stress than caregivers of school-age children, and this effect was driven by personal distress and problematic parent-child interactions, rather than having a difficult child. Conclusions These results suggest that caregivers of children with disorders of sex development may have different psychosocial needs based upon their child's developmental stage and based upon the disorder-related challenges that are most salient at that developmental stage.
Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.
Purpose of the Study: Cross-sectional evidence indicates that family caregivers reporting on the importance of daily care values and preferences of individuals with mild-to-moderate dementia consistently report less importance than individuals with dementia (IWDs) self-report. Discrepancy is primarily associated with caregivers' beliefs about…
Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.
Purpose of the Study: We explore discrepancies in perceptions of values and care preferences between individuals with dementia (IWDs) and their family caregivers. Design and Methods: We interviewed 266 dyads consisting of an individual with mild to moderate dementia and his or her family caregiver to determine IWDs' beliefs for 5 values related to…
Gerritsen, D.L.; Ettema, T.P.; Boelens, E.; Bos, J.T.; Hoogeveen, F.; Lange, J. de; Meihuizen, L.; Schölzel-Dorenbos, C.J.M.; Droes, R.M.
The domains of quality of life that are considered important by people with dementia and professional caregivers are not in agreement. This explorative study addresses the question, "To what degree do professional caregivers, in their daily working routine, focus on the quality-of-life domains that
Houle, Christy R; Joseph, Christine L M; Caldwell, Cleopatra Howard; Conrad, Frederick G; Parker, Edith A; Clark, Noreen M
In clinical and research settings, it is increasingly acknowledged that adolescents may be better positioned than their caregivers to provide information in regard to their own health status, including information related to asthma. Very little is known, however, about the congruence between adolescent and caregiver responses to questions about asthma beyond reports of symptoms. We analyzed data for 215 urban, primarily African-American adolescent-caregiver pairs. Adolescents and caregiver reports concerning the adolescent's asthma-related medical history were moderately correlated and not found to differ at the aggregate level. Correlations between adolescent and caregiver reports of the adolescent's asthma symptoms and functional status were weak, although these differences deteriorated at the aggregate level. Adolescent-caregiver reports of symptoms and functioning were more likely to be in agreement if the adolescent was older, if school personnel were unaware of the child's asthma, and if the adolescent's asthma was classified as mild intermittent. For questions concerning the frequency of hospitalizations, emergency department visits, and physician visits, moderate correlations between adolescent and caregiver responses were noted, although with some differences at the aggregate level. Findings suggest that, when adolescents and their caregivers are asked about the adolescent's asthma in clinical and research settings, the extent to which the two perspectives are likely to agree depends on the type of information sought. Clinicians and researchers may obtain more accurate information if questions about symptoms and functional status are directed toward adolescents.
Alsafran, Salman K; Davis, James S; Tankel, Susan; Varas, Robin; Quintana, Olga; Manning, Ron; Glenn, Candace; Pizano, Louis R; Namias, Nicholas; Schulman, Carl I
Advances in burn care have decreased mortality in the past 20 years, but affecting elderly mortality rates (>65 years) remain challenging. This study evaluates the impact of home caregiver support on elderly burn patients' mortality. The authors retrospectively reviewed patients aged 65 and older admitted to their burn center from July 1995 to October 2004. Patient demographics, Injury Severity Score, TBSA, and patients' primary caregiver were collected. The outcomes were mortality, disposition, and length of stay and these were evaluated using univariate and subsequently multivariate regression. Significance was calculated at P ≤ .05. A total of 112 patients were included in the analysis. The mean age was 76±8. Male patients constituted 47%, whereas 53% were female patients, and mean TBSA was 21±16%. Thirty patients' primary caregiver was a spouse, for 38 it was a child, and 44 had no caregiver. Fifty-eight patients survived (51.7%), and 54 patients died (48.3%). Only 21% of the survivors had a child as their primary caregiver; however, 48% of the nonsurvivors had a child as the primary caregiver (P ≤ 0.05). On multivariate analysis, age, TBSA, and child as primary caregiver were all independent predictors of mortality. Having a child as a caregiver provided the largest impact, with an odds ratio of 4.4 (95% confidence interval, 1.2-15.62; P = .02).
Conclusion: Primary caregivers of spinal cord injury patients report a heavy burden of care. As active coping strategies are more beneficial, medical care providers should encourage caregivers to make more use of these coping styles to promote physical and mental health for themselves, their patients and their family, as well as to improve the quality of care provided.
The population of distance caregivers of people with dementia/Alzheimer's disease has not been extensively researched. This research study focused on exploring the lived experience of people caring for someone with dementia/Alzheimer's disease from a distance (defined as 2 or more hours away) to help shed light on this caregiving population. Ten…
Kimemia, Muthoni; Asner-Self, Kimberly K.; Daire, Andrew P.
Given the high prevalence of HIV/AIDS in Kenya, more Kenyans now find themselves in the role of informal caregiver for a family member or multiple family members living with HIV/AIDS. However, there exists little research on how these individuals cope. The present study explores coping responses among caregivers for family members living with…
Schure, Lidwien M.; van den Heuvel, Elisabeth T. P.; Stewart, Roy E.; Sanderman, Robbert; de Witte, Luc P.; Meyboom-de Jong, Betty
Objective: The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den He
Vernooij-Dassen, M.J.F.J.; Lamers, C.; Bor, J.H.J.; Felling, A.J.A.; Grol, R.P.T.M.
In a randomized controlled study, positive effects were found of a support program for caregivers of dementia patients. The aim of this study is to identify in a secondary analysis the prognostic factors of success of the support program by comparing characteristics of patients and primary caregiver
Li, Lydia W.; McLaughlin, Sara J.
Purpose of the study: The primary aim of this investigation was to determine whether caregiver confidence in their care recipients' functional capabilities predicts changes in the performance of activities of daily living (ADL) among elderly home care recipients. A secondary aim was to explore how caregiver confidence and care recipient functional…
Coon, David W.; Thompson, Larry; Steffen, Ann; Sorocco, Kristen; Gallagher-Thompson, Dolores
Purpose: This study examines the short-term impact of two theoretically based psychoeducational small group interventions with distressed caregivers, and it also examines the role of specific moderator and mediator variables on caregiver outcomes. Design and Methods: Female participants (N = 169) aged 50 and older who were caring for a…
Nijboer, C; Triemstra, M; Sanderman, R; van den Bos, GAM
This study examined patterns and determinants of three dimensions of caregiver's health of newly diagnosed colorectal cancer patients, i.e. physical, mental and social functioning (N = 148). Physical functioning declined within a 6-month period in female caregivers, while no change was observed in m
Stuart, Melissa; McGrew, John H.
The study examined factors impacting caregiver burden following diagnosis of an autism spectrum disorder (ASD). Primary caregivers of children diagnosed with an ASD within the past 6 months (n = 78) were assessed on variables thought to influence outcomes associated with family stress as proposed within the double ABCX model of family adaptation,…
Neumeister, Kristie Speirs; Yssel, Nina; Burney, Virginia H.
Using grounded theory, this study investigated primary caregivers' perceptions of the role they play in influencing the academic success of students formally identified as twice-exceptional. Data from interviews were coded and analyzed for themes. Results indicated that primary caregivers (mothers) perceived that they played a major role in…
Hu, Jung; Lin, Jin-Ding; Yen, Chia-Feng; Loh, Ching-Hui; Hsu, Shang-Wei; Lin, Lan-Ping; Wu, Sheng-Ru
Background: This study provides a perspective on the mental health status and analyses the effectiveness of a stress-relief program for primary caregivers of adolescents with intellectual disability (ID). Method: Seventy-seven primary caregivers of people with ID were recruited (intervention group, n = 31; non-intervention group, n = 46) to the…
Full Text Available The issue of migrant live-in homecare workers has been barely addressed in the gerontological literature, in spite of the increase of older persons being cared for by such persons in many Western countries. The purposes of the study are to examine the extent to which migrant live-in homecare workers substitute family caregivers or complement the care that is provided by primary caregivers, and to examine if there are differences in primary caregivers’ involvement in providing help with activities of daily living (ADL and instrumental activities of daily living (IADL before and after hiring a migrant live-in homecare worker, by caregivers’ employment status and gender. The data were drawn from a study that included 335 triads (care recipients, their primary caregivers, and their Filipina live-in homecare workers. The findings show that for the most part primary caregivers continue to play a significant role in providing care, in particular with regard to IADL tasks, even when there is a migrant live-in homecare worker. Several patterns of division of labor between the formal and informal caregivers were identified; that is, in some cases they complement each other while in other cases the migrant live-in homecare workers substitute for the care previously provided by the primary caregivers. Significant differences between male and female caregivers and between working and nonworking caregivers were found with regard to involvement in providing care before and after employment of a migrant homecare worker.
Letourneau, Susan M.; Meisner, Robin; Neuwirth, Jessica L.; Sobel, David M.
In two studies, Providence Children's Museum investigated caregivers' observations and perceptions of their children's play and learning at the museum. In the first, caregivers (N = 40) were interviewed about what they observed children doing, what they believed children were thinking about, and their own thoughts and actions while watching…
U.S. Department of Health & Human Services — This report estimates the economic value of family caregiving at $450 billion in 2009 based on 42.1 million caregivers age 18 or older providing an average of 18.4...
Forsbrey, April D.; Frabutt, James M.; Smith, Heather L.
The authors used qualitative research methodology to examine the lives of caregivers of court-involved youths. Caregiver social isolation, including overall lack of support, lack of school support, and isolation from self, emerged as a salient theme across 7 domains. Implications for counselors are discussed, and brief descriptions of several…
Gardner, Margo; Martin, Anne; Brooks-Gunn, Jeanne
In a sample of urban youth (N = 1,070), we examined the links between primary caregiver affect (i.e., warmth and hostility) and two measures of sexual behavior in adolescence--early sexual initiation and sex with multiple partners. We also examined the extent to which neighborhood disadvantage moderated associations between caregiver affect and…
Kavanaugh, Melinda S; Noh, Hyunjin; Zhang, Lixia
Knowledge of patient end-of-life (EOL) wishes and discussions are vital for family caregivers, including children and youth who may be in caregiving roles ("young carers" or "caregiving youth"). However, little is known about caregiving youth awareness and perceptions of EOL issues. This study sought to explore caregiving youth knowledge of EOL wishes and their willingness for EOL discussions. Face-to-face interviews with 40 caregiving youth ages 10-20, who have a parent with Huntington's disease (HD), provided information about their knowledge of the presence of their ill parent's living will (LW) and durable power of attorney for health care (DPAHC), and willingness to talk with the parent about EOL choices and possibility of death. Less than one-half of the participants were aware of the parent's LW or DPAHC. Content analysis revealed themes in reasons to want or not want EOL discussion with the parent: respect for the parent's wishes, caregiving youths' opinion not valued, and avoidance of EOL issues. Themes also included reasons to not want discussion with the parent about possibility of death: protecting the parent, parent in denial, parent not ready, and realization of the terminal outcome. Findings suggest HD patients and their caregiving youth need support for open EOL discussions, and could benefit from educational programs and support groups around EOL issues.
Bogard, Connie Lynn
As the population continues to become more aged and at risk for chronic illness, there will be a growing need for caregivers. Caregivers to persons with Parkinson's disease (PD) face the challenge of providing care over many years due to the chronic progressive nature of this neurological disorder. The purpose of this study was to understand and…
Haley, William E.; And Others
Evaluated the effectiveness of group interventions for caregivers of elderly dementia patients. Indicated that, although caregivers rated the groups as quite helpful, group participation did not lead to improvements on objective measures of depression, life satisfaction, social support, or coping variables. (Author/ABB)
Zhan, Heying Jenny
This article uses the life course perspective to combine micro- and macro-levels of analysis of caregiving burdens experienced by Chinese baby-boom cohort and then explores their elder care prospects. Based on survey interviews during 1997 and 1998 with 110 caregivers providing care to dependent parents or parents-in-law, this study finds that…
Postma, M.; Thavorncharoensap, M.; Riewpaiboon, A.; Thinyounyong, W.
Objectives: To estimate the utility scores for diarrheal children aged under 5 years and their caregivers and to identify the influencing factors which affected on these. Methods: Hospitalized diarrheal children aged between 2 months and 5 years and their caregivers at were recruited in this cross-s
Coles, Lisa D; Patterson, Edward E; Sheffield, W Douglas; Mavoori, Jaideep; Higgins, Jason; Michael, Bland; Leyde, Kent; Cloyd, James C; Litt, Brian; Vite, Charles; Worrell, Gregory A
A device capable of detecting seizures and alerting caregivers would be a major advance for epilepsy management, and could be used to guide early intervention and prevent seizure-related injuries. The objective of this work was to evaluate a seizure advisory system (SAS) that alerts caregivers of seizures in canines with naturally occurring epilepsy. Four dogs with epilepsy were implanted with a SAS that wirelessly transmits continuous intracranial EEG (iEEG) to an external device embedded with a seizure detection algorithm and the capability to alert caregivers. In this study a veterinarian was alerted by automated text message if prolonged or repetitive seizures occurred, and a rescue therapy protocol was implemented. The performance of the SAS caregiver alert was evaluated over the course of 8 weeks. Following discontinuation of antiepileptic drugs, the dogs experienced spontaneous unprovoked partial seizures that secondarily generalized. Three prolonged or repetitive seizure episodes occurred in 2 of the dogs. On each occasion, the SAS caregiver alert successfully alerted an on call veterinarian who confirmed the seizure activity via remote video-monitoring. A rescue medication was then administered and the seizures were aborted. This study demonstrates the feasibility of a SAS to alert caregivers to the occurrence of prolonged or repetitive seizures and enables rescue medications to be delivered in a timely manner. The SAS may improve the management of human epilepsy by alerting caregivers of seizures, enabling early interventions, and potentially improving outcomes and quality of life of patients and caregivers.
Blusi, Madeleine; Dalin, Rolf; Jong, Mats
We conducted a pragmatic, mixed methods study comparing rural family caregivers receiving e-health caregiver support (n = 35) with a control group (n = 21) receiving conventional, non-e-health, caregiver support. After 18 months, the benefits of support were evaluated using the Care Effectiveness Scale (40-items exploring the domains of preparedness, enrichment and predictability). In all domains the e-health group scored significantly higher than the control group. The adjusted difference for overall benefits was 3.0 (P = 0.02) on the scale 0-10. In addition, semi structured interviews were conducted with a sub-sample of the caregivers. For the e-health group flexibility, availability and being able to individualise the support were essential factors. All caregivers in the control group found conventional support to be beneficial, but also stressed unmet needs related to the conventional support being standardised and non-flexible. The study suggests that providers of caregiver support should offer e-health support as an alternative to conventional caregiver support, as it can be more beneficial to family caregivers.
Belcher, Harolyn M. E.; Watkins, Katara; Johnson, Elizabeth; Ialongo, Nicholas
This study investigates the role of socioeconomic status, parental mental health, and knowledge of child development on parenting styles and perceived parenting stress in caregivers of children, ages 3 months to 3 years, enrolled in Early Head Start (EHS). Caregivers of EHS students were interviewed using the Knowledge of Infant Development…
Hus, Vanessa; Taylor, Amanda; Lord, Catherine
Background: Delays in development are a fundamental feature in diagnosing autism spectrum disorders (ASD). Age of language acquisition, usually obtained through retrospective caregiver report, is currently used to distinguish between categories within ASD. Research has shown that caregivers often report children as having acquired developmental…
Khalaila, Rabia; Cohen, Miri; Zidan, Jamal
The pH in saliva, which decreases due to the activation of the sympathetic nervous system, may serve as a biomarker of psychological distress in caregivers but has rarely been studied in this context. The aims are to examine the levels of salivary pH as a possible biomarker of depression among caregivers and whether depression mediates the association between caregiving status (cancer caregivers vs. non-cancer caregivers) and pH levels. Cross-sectional data were collected from 68 consecutive-sampled spouses of cancer patients, and 42 age-matched individuals. Lower levels of pH saliva were found among caregivers of cancer patients than in the comparison group. Being a caregiver, poor subjective health, higher depression, and lower mastery predicted lower pH levels. In addition, depression mediated the associations of mastery with pH levels. The study provides preliminary evidence that salivary pH may serve as an easily tested indicator of the stress of caregiving and its related depression.
Mitchell, Lori A.; Hirdes, John; Poss, Jeff W.; Slegers-Boyd, Caroline; Caldarelli, Hilary; Martin, Lynn
Background Individuals living in the community with neurological conditions receive the majority of their care from informal caregivers. The purpose of this project was to provide a profile of caregivers of home care clients with neurological conditions. The study also examined prevalence of caregiver distress and the association between neurological conditions and other client and caregiver characteristics with distress. Methods The study population included Canadian home care clients in the...
Wilson Keith G
Full Text Available Abstract Background Since the majority of stroke survivors return home following their stroke, families play a pivotal role in their care. Few studies have addressed both positive and negative aspects of this role or the broader construct of health-related quality of life (HRQL. Furthermore, little consideration has been given to the context of care in terms of relationship quality, and reciprocity. The present study examined the relationships between caregiver quality of life (HRQL, caregiver role, relationship satisfaction, balance and reciprocity in caregivers of partners who had experienced a stroke. Specific hypotheses were made based on equity theory in social relations. Methods Fifty-six partner caregivers completed a postal survey that included measures of HRQL (SF-36, caregiver role (negative and positive aspects, relationship satisfaction, reciprocity and balance. Data were also collected on the care recipients' quality of life (Stroke Specific Quality of Life scale. Results Compared to a normative sample, caregivers' HRQL was lower for all SF-36 domains. Care recipient and caregiver age, care recipient quality of life and caregiver role (negative significantly predicted physical component summary scores on the SF-36, while care recipient quality of life and caregiver role (negative significantly correlated with mental component summary scores. Relationship satisfaction and intrinsic rewards of caregiving were found to be important predictors of positive aspects of the caregiver role. Caregivers who viewed their relationship as less balanced in terms of give and take had significantly greater caregiver burden than those who viewed their relationship as more equitable. Conclusions The study highlights the importance of taking a broader approach to examining partner caregiving in the context of stroke, in terms of the caregiving relationship and their influence on the health and well-being of caregivers.
Patrícia Arriaga; Catarina Pacheco
This study investigated the effects of hospital Clown Doctors intervention on child and caregiver preoperative anxiety at the entrance to the surgery care unit and separation from caregivers. A total of 88 children (aged 4-12 years) were assigned to one of the following two groups: Clown Doctors intervention or control group (standard care). Independent observational records using the modified Yale Preoperative Anxiety Scale instrument assessed children’s anxiety, while the State-Trait Anxiet...
Ramesh Chand Chauhan
Full Text Available Background: Due to wider access to and free antiretroviral therapy (ART program, the number of children dying due to acquired immune deficiency syndrome (AIDS-related causes has declined and the nature and duration of human immunodeficiency virus (HIV/AIDS caregiving has also dramatically altered. The care of children living with HIV/AIDS (CLHA places a significant additional burden on the caregivers. Aims: This study was conducted to assess the perceived burden among caregivers of children living with HIV in North India. Materials and Methods: A hospital-based cross-sectional study among 156 CLHA-caregiver dyads in North India was conducted from June 2010 to May 2011. Data were collected by using a pretested structured interview schedule. The caregiver burden was measured with a 36-item scale adapted from Burden Assessment Schedule of Schizophrenia Research Foundation (BASS. Child characteristics, caregiver characteristics, caregiving burden, the knowledge of caregivers, and issues related to health care, nutrition, education, and psychological aspects were studied. Results: Caregivers had a mean age of 35.9 ± 10.2 years. Women accounted for over three-fourth (76.9% of the caregivers. Nearly two-third of them (65.4% reported as living with HIV. The mean caregiver burden score was 68.7 ± 2.9. A majority of the caregivers reported either low or moderate burden. Standardized percentage score was high in the domains of physical and mental health, external support, patients′ behavior, and caregivers′ strategy and seemed to be comparatively less in the other domains such as support of the patient and taking responsibility. Conclusions: Caring of children is a universal practice but there is a need of special care for children living with HIV. The majority of caregivers who were usually the mothers perceived the burden and need to be assisted in caring for the child. Stigma and discrimination with HIV infection further increased the burden as
Malak, Roksana; Krawczyk-Wasielewska, Agnieszka; Mojs, Ewa; Grobelny, Bartosz; Głodowska, Katarzyna B.; Millán-Calenti, José Carlos; Núñez-Naveira, Laura; Samborski, Włodzimierz
Background The person with dementia should be treated as an unique person regarding symptoms directly associated with dementia, such as problems with memory, hallucinations, and delusions, as well as other physical, mental, or neurological deficits. The symptoms not directly typical of dementia, such as musculoskeletal disorders or depression, should be also be considered in order to improve the quality of life of a person with dementia. That is why professional caregivers have to broaden their current knowledge not only of medical symptoms but also of the patient’s psychosocial condition and increase their inquisitiveness about the individual condition of the patient. The aim of the study was to get to know the opinion of professional caregivers about the UnderstAID platform and its usefulness for informal caregivers. Material/Methods Participants in the study group consisted of professional caregivers: nurses, sociologists, psychologists, physiotherapists, and occupational therapists, all of whom specialized in geriatrics and had experience in working with people with dementia. All professional caregivers answered 24 questions that refer to positive and negative aspects of the UnderstAID platform. Results The study group of professional caregivers highly appreciated that the application could give support to caregivers (mean score of 4.78; 5 points means that they totally agreed, and 1 point means that they totally disagreed) and that a wide range of multimedia materials helped the informal caregivers to gain a better understanding of the contents (mean score of 4.78). There was a statistically significant correlation between the age of the professional caregivers and the frequency of positive opinions that the UnderstAID application gave support to caregivers of relatives with dementia (p=0.028) and the opinion that videos, photos, and pictures may help the informal caregivers to gain a better understanding of the contents (p=0.028). Conclusions A group of
Assistance from informal caregivers such as family members, friends, or neighbors is crucial to adequately managing the complex care of heart failure (HF) patients. This study examined the lived experience of African American caregivers caring for African American patients with HF. Purposive sampling was used to recruit 10 participants who were formally interviewed. The interviews, analyzed using Colaizzi's steps, revealed six themes: layers of support, realization of self-neglect, experiencing the "blues," connecting with healthcare providers, unmet financial needs, and perception of nonadherence. The information regarding the experience of African American caregivers of HF patients obtained through this research will inform the delivery of culturally competent support to caregivers, thereby improving quality of life for both the HF patients and their caregivers.
Clark, Matthew M; Atherton, Pamela J; Lapid, Maria I; Rausch, Sarah M; Frost, Marlene H; Cheville, Andrea L; Hanson, Jean M; Garces, Yolanda I; Brown, Paul D; Sloan, Jeff A; Richardson, Jarrett W; Piderman, Katherine M; Rummans, Teresa A
Fatigue is the problematic symptom identified by patients with cancer. However, fatigue has not been widely examined in caregivers of patients with cancer. In this study, 131 caregivers of patients diagnosed with advanced stage cancer and actively receiving radiotherapy reported experiencing the most difficulties with fatigue (mean 46.9; on a 0-100 scale, with a 10-point difference having clinical meaning) at baseline and at a 6-month follow-up (mean 48.3). This is in sharp contrast to other domains of quality of life and functioning being rated in the 60s, 70s and 80s by the caregivers of patients with cancer. Given the level of fatigue reported by the caregivers of patients with cancer, if confirmed by other investigators in larger and more diverse samples, interventions targeting caregiver fatigue should be explored.
Bevans, Margaret; Wehrlen, Leslie; Castro, Kathleen; Prince, Patricia; Shelburne, Nonniekaye; Soeken, Karen; Zabora, James; Wallen, Gwenyth R
The aim of this study was to determine the effect of problem-solving education on self-efficacy and distress in informal caregivers of allogeneic hematopoietic stem cell transplantation patients. Patient/caregiver teams attended three 1-hour problem-solving education sessions to help cope with problems during hematopoietic stem cell transplantation. Primary measures included the Cancer Self-Efficacy Scale-transplant and Brief Symptom Inventory-18. Active caregivers reported improvements in self-efficacy (p caregiver responders also reported better health outcomes such as fatigue. The effect of problem-solving education on self-efficacy and distress in hematopoietic stem cell transplantation caregivers supports its inclusion in future interventions to meet the multifaceted needs of this population.
Sharma, Manoj Kumar
Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents’ distress and enabling them to handle the dysfunction in users. PMID:27114629
Anjos, Ana Paula; Ward-Griffin, Catherine; Leipert, Beverly
There is growing evidence that family caregivers who are also employed face challenges in balancing the multiple demands associated with family caregiving. Health professionals who are family caregivers, defined in this study as double-duty caregivers (DDCs), are expected to use their professional knowledge in the provision of family care. The purpose of this qualitative secondary analysis was to explore how gendered expectations and exemptions affect the caregiving experiences and personal health of male nurses caring for family members. Being a male DDC created intersecting gendered expectations and exemptions. These coexisting and at times conflicting expectations and exemptions, constituted by the overarching theme of the determinants of care, directly influenced the health of male DDCs as they experienced tension when negotiating their dual role. The findings have direct implications for health-care policy and practice, research, and theory development.
Full Text Available Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.
Grady, Patricia A; Gullatte, Mary
The National Nursing Research Roundtable (NNRR) meets annually to provide an opportunity for the leaders of nursing organizations with a research mission to discuss and disseminate research findings to improve health outcomes. In 2014, the NNRR addressed the science of caregiving, a topic of increasing importance given that more people are living with chronic conditions and that managing chronic illness is shifting from providers to individuals, their families, and the communities where they live. The NNRR consisted of scientific presentations in which leading researchers discussed the latest advances in caregiving science across the life span and breakout sessions where specific questions were discussed. The questions focused on the policy and practice implications of caregiving science and provided an opportunity for nursing leaders to discuss ways to advance caregiving science. The nursing community is ideally positioned to design and test caregiver health interventions and to implement these interventions in clinical and community settings.
Patel, Bina R
Today, as a result of the longest volunteer-fought conflict in U.S. history, there are many wounded coming home not only with posttraumatic stress disorder (PTSD), but also with traumatic brain injury (TBI), which together have been called the "signature" or "invisible" injuries of the Iraq and Afghanistan wars. Caregivers are an important part of their recovery, yet little is known about them, as previous research on caregivers mostly focused on geriatric populations. According to one estimate 275,000 to 1 million people are currently caring or have cared for loved ones who have returned from Iraq and Afghanistan. These caregivers are unique in that they are younger, some with children, and they are caring for a unique under-studied population for longer periods of time. This article summarizes literature on caregivers of veterans who suffer from PTSD, TBI, or both; provides a theoretical framework; and discusses implications for social workers in assisting caregivers and their families.
López, J; Romero-Moreno, R; Márquez-González, M; Losada, A
Although previous studies indicate a negative association between caregivers' anger and health, the potential mechanisms linking this relationship are not yet fully understood. The aim of this study was to explore the potential mediating role of optimism in the relationship between anger and caregivers' physical health. Dementia caregivers (n = 108) were interviewed and filled out instruments assessing their anger (reaction), optimism and health (vitality). A mediational model was tested to determine whether optimism partially mediated the relationship between anger and vitality. Angry reaction was negatively associated with optimism and vitality; optimism was positively associated with vitality. Finally, the relationship between angry reaction and vitality decreased when optimism was entered simultaneously. A non-parametric bootstrap approach confirmed that optimism significantly mediated some of the relationship between angry reaction and vitality. These findings suggest that low optimism may help explain the association between caregivers' anger and reduced sense of vitality. The results provide a specific target for intervention with caregivers.
Sharma, Manoj Kumar
Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents' distress and enabling them to handle the dysfunction in users.
Mortensen, Jesper; Dich, Nadya; Lange, Theis;
.20, 95% CI 1.03-1.41), but the excess risk was not more than expected from joint exposure to caregiving and job strain. Neither job strain nor informal caregiving predicted sickness absence for men. CONCLUSIONS: High job strain and informal caregiving predicted long-term sickness absence among women......OBJECTIVES: The aim of this study was to investigate the individual, joint and interactive effects of job strain and informal caregiving on long-term sickness absence with special attention to gender differences. METHODS: The study comprised a prospective cohort study of 6798 working adults from...... France, 14 727 from Finland, and 5275 from the UK. A total of 26 800 participants, age 52 (interquartile range 47-56) years participated in the study. Job strain was assessed using the demand-control model. Informal caregiving was defined as care for a sick, disabled, or elderly person. Long...
Williams, Christine L; Parker, Carlo
There have been few reported studies of communication between spouses with Alzheimer's disease (AD) and related dementia. An observer rating scale for verbal and nonverbal behavior, Verbal-Nonverbal Interaction Scale for Caregivers (VNVIS-CG), was developed to study caregiver communication in couples affected by AD. Preliminary psychometric testing showed that the VNVIS-CG evidenced good reliability and validity. Researchers observed both common caregiver communication strategies and novel strategies that have not been reported in the literature. In future studies, researchers can examine the relationship between caregiver communication and indicators of mental health. Everyday conversations provide fertile ground for nurses to influence family relationships. Nurses can teach caregivers to use strategies that promote engagement and avoid those that discourage participation.
Ana María Díaz López
Full Text Available The incidence of cerebrovascular disease in Spain ranges between 120 and 350 cases per 100.000 inhabitants. The incidence is lower in women (169/100.000 than men (183-364/100.000. It is the leading cause of death in Spain by specific entities in women and the third in men.The main complication, hemiplegic, resulting in functional sequelae, they are going to affect both the patient and the relatives with whom he lives (sometimes is a family trauma, because the patient may need constant care. The figure of the caregiver at these cases is important because the recovery period may be extended in time or even undefined.The objective of this protocol is to improve the caregiver labour so that adequate hygienic postural measures should be taken at home in order to prevent side effects such as pressure ulcers, stiffness or deformities that worsen the diagnosis and quality of life of the person affected.Finally, we may add that following these rules contributes to the functional improvement of these patients, since it provides propioceptive information, it raises awareness of body image, decrease the muscle hypertonus as well as it helps a good gait pattern and contributes to prevent the onset of shoulder pain which is so common in this disease.
Grandón, Pamela; Jenaro, Cristina; Lemos, Serafín
This article explores family burden in relation to relatives' coping strategies and social networks, as well as in relation to the patients' severity of positive and negative symptoms. Data on the severity of symptoms (Positive and Negative Syndrome Scale for Schizophrenia [PANSS]), social functioning (Social Functioning Scale [SFS]), caregivers burden (Interview on Objective and Subjective Family Burden or Entrevista de Carga Familiar Objetiva y Subjetiva [ECFOS]), coping skills (Family Coping Questionnaire [FCQ]), and social support (Social Network Questionnaire [SNQ]) were gathered from a randomized sample of 101 Chilean outpatients and their primary caregivers, mostly mothers. Low levels of burden were typically found, with the exception of moderate levels on general concerns for the ill relative. A hierarchical regression analysis with four blocks showed that clinical characteristics, such as higher frequency of relapses, more positive symptoms and lower independence-performance, together with lower self-control attributed to the patient, decrease in social interests, and less affective support, predict burden. The results support the relevance of psychoeducational interventions where families' needs are addressed.
Full Text Available The positive outcomes associated with Patient Engagement (PE have been strongly supported by the recent literature. However, this concept has been marginally addressed in the context of cancer. Limited attention has also received the role of informal caregivers in promoting physical and psychological well-being of patients, as well as the interdependence of dyads. The Cancer Dyads Group Intervention (CDGI is a couple-based psychosocial intervention developed to promote engagement in management behaviors, positive health outcomes, and the quality of the relationship between cancer patients and their informal caregivers. The article examines the ability of the CDGI to promote adaptive coping behaviors and the perceived level of closeness by comparing cancer patients participating in the intervention and patients receiving psychosocial care at usual. Results indicate that individuals diagnosed with cancer attending the CDGI present significant increases in Fighting Spirit and Avoidance, while reporting also reduced levels of Fatalism and Anxious Preoccupation. Initial indications suggest that the intervention may contribute to strengthening the relationship with the primary support person.
Keene, Jennifer R; Prokos, Anastasia H; Held, Barbara
We use data from the 2006 American Community Survey to examine race and ethnic differences in the effects of marital status and co-residence of the middle generation on the likelihood of poverty among grandfathers who have primary responsibility for co-resident grandchildren (N = 3,379). Logistic regression results indicate that race/ethnicity and household composition are significant predictors of poverty for grandfather caregivers: non-Hispanic white grandfathers, those who are married, and those with a co-resident middle generation are the least likely to be poor. The effects of race/ethnicity, marital status, and the presence of a middle generation are, however, contingent upon one another. Specifically, the negative effect of being married is lower among grandfathers who are Hispanic, African American, non-Hispanic, and non-Hispanics of other race/ethnic groups compared to whites. In addition, having a middle generation in the home has a larger negative effect on poverty for race/ethnic minority grandfathers than for non-Hispanic whites. Finally, the combined effects of marriage and a middle generation vary across race/ethnic group and are associated with lower chances of poverty among some groups compared with others. We use the theory of cumulative disadvantage to interpret these findings and suggest that race/ethnicity and household composition are synergistically related to economic resources for grandfather caregivers.
Lee, Sunmin; Kawachi, Ichiro; Grodstein, Francine
Increasing numbers of women provide care to their ill spouses; however, no studies have examined possible effects of caregiving stress on cognitive function. We administered 6 tests of cognitive function to 13740 Nurses' Health Study participants aged 70-79 years. We collected information on caregiving and numerous potential confounding variables via biennial mailed questionnaires. After adjustment for potential confounders (age, education, mental health index, vitality index, use of antidepressants, and history of high blood pressure, diabetes, and heart disease), we found modest but significantly increased risks of low cognitive function on three of the cognitive tests among women who provided care to a disabled or ill spouse compared with women who did not provide any care. For example, on the TICS, a test of general cognition, the risk of a low score was 31% higher in women who provided care compared with women who did not (RR = 1.31, 95% CI 1.10, 1.56). We found a moderately increased risk of poor performance on several cognitive tests among women who provided care to their disabled or ill husbands.
Wharewera-Mika, Julie; Cooper, Erana; Kool, Bridget; Pereira, Susana; Kelly, Patrick
Head injury is a leading cause of mortality and acquired neurological impairment in children. Head-injured children may have neurobehavioural deficits that persist for years following injury. Head injury can result in significant and persistent caregiver burden, including mental health issues, family stress and disorganisation, and unmet social and healthcare service needs. Few studies have examined the healthcare and social service needs of children and their families following head injury sustained at an early age. This qualitative study aims to describe the experiences of caregivers of children who sustained a serious head injury (particularly non-accidental head injury) before the age of 2 years. Caregivers were interviewed up to 15 years following the initial injury. Semi-structured interviews with 21 caregivers of 15 children (aged 3-15 years at the time of interview) were completed. Thematic analysis of interview data generated three key themes: impact, support and information. The study's findings reveal the broad impact of serious childhood head injury on caregivers, specifically the significant distress and burden brought about through lack of information, challenges in accessing support and inconsistent care. Recommendations for developing a quality 'model of care' and improving ease of access to supports for caregivers are provided.
van den Heuvel, Elisabeth T P; Witte, Luc P de; Stewart, Roy E; Schure, Lidwien M; Sanderman, Robbert; Meyboom-de Jong, Betty
In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers' active coping and knowledge, reducing caregivers' strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.
Sun, Fei; Durkin, Daniel W.; Hilgeman, Michelle M.; Harris, Grant; Gaugler, Joseph E.; Wardian, Jana; Allen, Rebecca S.; Burgio, Louis D.
Purpose: Literature on institutionalization of patients with dementia has not considered the role of caregivers' quality of care, which encompasses caregivers' exemplary care (EC) behaviors and caregivers' potentially harmful behaviors (PHBs) toward care recipients. This study sought to understand the role of quality of care in mediating between…
Haj Mohammad, N; Walter, A W; van Oijen, M G H; Hulshof, M C C M; Bergman, J J G H M; Anderegg, M C J; van Berge Henegouwen, M I; Henselmans, I; Sprangers, M A G; van Laarhoven, H W M
OBJECTIVES: The aim of this study is to examine caregiver burden of spousal caregivers of patients with esophageal cancer after curative treatment with neoadjuvant chemoradiation followed by resection and to assess factors associated with caregiver burden. METHODS: In this exploratory, cross-section
Joshi, Gungeet; Gezan, Salvador; Delisle, Tony; Stopka, Christine; Pigg, Morgan; Tillman, Mark
As the older adult population increases, the healthcare system is experiencing a shortage of professional health care providers and caregivers. Consequently, the role of family to serve as caregivers will expand to care for older relatives at home. Thus, a larger proportion of adult children will become caregivers, including young adults enrolled…
Damen, S.; Kef, S.; Worm, M.; Janssen, M.J.; Schuengel, C.
Background Individuals in group homes may experience poor quality of social interaction with their professional caregivers, limiting their quality of life. The video-based Contact programme may help caregivers to improve their interaction with clients. Method Seventy-two caregivers of 12 individuals
Kim, Hyunmin; Paige Powell, M; Bhuyan, Soumitra S; Bhuyan, Soumitra Sudip
Family caregivers play an important role to care cancer patients since they exchange medical information with health care providers. However, relatively little is known about how family caregivers seek medical information using mobile apps and the Internet. We examined factors associated with medical information seeking by using mobile apps and the Internet among family caregivers and the general public using data from the 2014 Health Information National Trends Survey 4 Cycle 1. The study sample consisted of 2425 family caregivers and 1252 non-family caregivers (the general public). Guided by Comprehensive Model of Information Seeking (CMIS), we examined related factors' impact on two outcome variables for medical information seeking: mobile apps use and Internet use with multivariate logistic regression analyses. We found that online medical information seeking is different between family caregivers and the general public. Overall, the use of the Internet for medical information seeking is more common among family caregivers, while the use of mobile apps is less common among family caregivers compared with the general public. Married family caregivers were less likely to use mobile apps, while family caregivers who would trust cancer information were more likely to use the Internet for medical information seeking as compared to the general public. Medical information seeking behavior among family caregivers can be an important predictor of both their health and the health of their cancer patients. Future research should explore the low usage of mobile health applications among family caregiver population.
Khanna, Rahul; Madhavan, S. Suresh; Smith, Michael J.; Patrick, Julie H.; Tworek, Cindy; Becker-Cottrill, Barbara
The impact of caring for a child with autism on caregivers' health-related quality of life (HRQOL) is not fully understood. The objective of this study was to compare the HRQOL scores of caregivers of children with autism to those of the general US population and to identify the factors that influence HRQOL. Caregivers of children with autism had…
Sanders, Sara; Ott, Carol H.; Kelber, Sheryl T.; Noonan, Patricia
An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to…
Full Text Available OBJECTIVE: The aim of this study was to evaluate caregiver burden based on Zarit Burden Interview (ZBI and depression in caregivers on the Beck Depression Inventory-II (BDI-II. METHODS: Literate individuals, 18 years or older, who spoke Spanish as their native language were included. Demographic characteristics: Age, sex, education, relationship to person with dementia, length of time caregiving, other sources of help for caring, impact on the household economy, family support, and perception of impaired health; and Clinical data on care-recipients: type of dementia, time since diagnosis, treatment, and Global Deterioration Scale (GDS; the ZBI and BDI-II. Descriptive and analytical statistics were employed to assess caregiver burden and predictors of higher burden in caregivers. RESULTS: A total of 92 informal caregivers were evaluated. Regarding care-recipients, 75% were 69 years old or over, 75% had at least one year since diagnosis, 73.9% had Alzheimer's disease, 84.8% received treatment, 75% scored 5 or over on the GDS. For caregivers, 75% were 55.5 years old or over, predominantly female (81.5%, married (83.7%, the spouse of care-recipients (60.87%, had at least 10 years of education (75.0% and one year of caregiving (75%, reduced entertainment time (90.2% and self-perception of impaired health (83.7%. Median score on the ZBI was 37.5 (minimum value = 3; and maximum value = 74. The coefficient of BDI was 1.38 (p-value <0.001. CONCLUSION: This sample of Peruvian informal caregivers showed elevated ZBI values. Self-perception of worsened health, repercussion on the family economy and time caregiving were the main determinants of ZBI, although only BDI was a consistent predictor of ZBI.
Irwin, M; Hauger, R; Patterson, T L; Semple, S; Ziegler, M; Grant, I
The association between Alzheimer caregiving and natural killer (NK) cell activity and basal plasma levels of adrenocorticotropic hormone (ACTH), cortisol, beta-endorphin, prolactin, epinephrine, norepinephrine, and neuropeptide Y was determined in 100 spousal Alzheimer caregivers and 33 age- and gender-comparable control volunteers upon intake into a study of the psychological and physiologic impact of caregiving. The relationship between these physiologic measures and individual characteristics such as age, gender, medical status, severity of stress, severity of depressive symptoms, and caregiver burden was tested. In addition, the association between NK activity and alterations of the neuroendocrine measures was investigated. As compared to controls, the Alzheimer caregivers had similar levels of NK activity and of basal plasma neuroendocrine hormones and sympathetic measures. While older age and male gender status were associated with increased levels of ACTH, neither medical caseness, severity of life stress, nor severity of depressive symptoms was associated with alterations in any of the multiple physiologic domains. Classification of Alzheimer caregiver burden identified caregivers who were mismatched in terms of the amount of care they were required to provide and the amount of respite time received. The mismatched caregivers had significantly higher basal plasma ACTH but no change in other physiological measures, as compared to non-mismatched caregivers. NK activity was negatively correlated with plasma levels of neuropeptide Y but not with any of the other neuroendocrine measures. Based on this cross-sectional evaluation of NK activity and neuroendocrine and sympathetic measures, we conclude that most Alzheimer caregivers do not show evidence of altered basal physiology.
Shahi, Varun; Lapid, Maria I.; Kung, Simon; Atherton, Pamela J.; Sloan, Jeff A.; Clark, Matthew M.; Rummans, Teresa A.
Background There are significant burdens associated with providing care for loved ones with cancer. However, caregiver quality of life (QOL) is often overlooked. With the increasing number of older adults with cancer, it is important to determine whether a patient’s age and QOL have any association with the caregiver’s QOL. Objective The objective of our study was to describe caregiver QOL and explore whether patient age and other psychosocial factors impact caregiver QOL. Design Baseline information from patients with advanced cancer undergoing radiation and their caregivers, who were enrolled in a randomized, controlled clinical trial to test the effectiveness of a structured, multidisciplinary QOL intervention, was analyzed for this study. Measurement Caregivers completed the Caregiver Quality of Life Index—Cancer Scale (CQOLC). Both patients and caregivers completed the Linear Analogue Self-Assessment (LASA) to measure QOL, and Profile of Mood States (POMS) to measure mood states. Results Overall, 131 patient-caregiver pairs participated in the study. At baseline, caregivers of older adults (≥65 years) had higher mental (P=0.01), emotional (P=0.003), spiritual (P<0.01), and social support (P=0.03) LASA QOL scores. Caregivers of older adults also had higher baseline QOL (CQOLC, P=0.003) and mood (POMS, P=0.04) than caregivers of younger adults. Caregivers of patients with higher LASA QOL scores had higher overall (P=0.02), mental (P=0.006), physical (P=0.02), emotional (P=0.002), and spiritual LASA QOL scores (P=0.047). Conclusions Caregivers of older adults with advanced cancer demonstrated better QOL and fewer mood disturbances compared to caregivers of younger patients. When patients have good QOL, caregivers also had good QOL. PMID:24726867
Full Text Available Timothy Kwok,1,2 Bel Wong,2 Isaac Ip,2 Kenny Chui,2 Daniel Young,2 Florence Ho2 1Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong, Special Administrative Region; 2Jockey Club Centre for Positive Ageing, Hong Kong, Special Administrative Region Purpose: Many family caregivers of persons with dementia (PWD are unable to participate in community center-based caregiver support services because of logistical constraints. This study evaluated the effectiveness of a telephone-delivered psychoeducational intervention for family caregivers of PWD in alleviating caregiver burden and enhancing caregiving self-efficacy. Subjects and methods: In a single-blinded randomized controlled trial, 38 family caregivers of PWD were randomly allocated into an intervention group or a control group. The intervention group received psychoeducation from a registered social worker over the phone for 12 sessions. Caregivers in the control group were given a DVD containing educational information about dementia caregiving. Outcomes of the intervention were measured by the Chinese versions of the Zarit Burden Interview and the Revised Scale for Caregiving Self-efficacy. Mann–Whitney U tests were used to compare the differences between the intervention and control groups. Results: The level of burden of caregivers in the intervention group reduced significantly compared with caregivers in the control group. Caregivers in the intervention group also reported significantly more gain in self-efficacy in obtaining respite than the control group. Conclusion: A structured telephone intervention can benefit dementia caregivers in terms of self-efficacy and caregiving burden. The limitations of the research and recommendations for intervention are discussed. Keywords: telephone intervention, psychoeducation, dementia caregivers
Full Text Available Abstract Background Caregivers constitute an important informal workforce, often undervalued, facing challenges to maintain their caring role, health and wellbeing. Little is known about caregivers in middle-income countries like Thailand. This study investigates the physical and mental health of Thai adult caregivers. Methods This report derives from distance-learning students working and residing throughout Thailand and recruited for a health-risk transition study in 2005 (N=87,134 from Sukhothai Thammathirat Open University. The cohort follow-up questionnaire in 2009 (N = 60,569 includes questions on caregiver status which were not available in 2005; accordingly, this study is confined to analysis of the 2009 data. We report cross-sectional associations between caregiver status and health. Results Among the study participants in 2009, 27.5% reported being part-time caregivers and 6.6% reported being full-time caregivers. Compared to male non-caregivers, being a part-time or full-time male caregiver was associated with lower back pain (covariate-Adjusted Odds Ratios, AOR 1.36 and 1.67, with poor psychological health (AOR 1.16 and 1.68, but not with poor self-assessed health. Compared to female non-caregivers, being a part- or full-time female caregiver was associated with lower back pain (AOR 1.47 and 1.84, psychological distress (AOR 1.32 and 1.52, and poor self-assessed health (AOR 1.21 and 1.34. Conclusions Adult caregivers in Thailand experienced a consistent adverse physical and mental health burden. A dose–response effect was evident, with odds ratios higher for full-time caregivers than for part-time, and non-caregivers. Our findings should raise awareness of caregivers, their unmet needs, and support required in Thailand and other similar middle-income countries.
Péloquin, Katherine; Brassard, Audrey; Lafontaine, Marie-France; Shaver, Phillip R
Attachment researchers have proposed that the attachment, caregiving, and sexual behavioral systems are interrelated in adult love relationships (Mikulincer & Shaver, 2007 ). This study examined whether aspects of partners' caregiving (proximity, sensitivity, control, compulsive caregiving) mediated the association between their attachment insecurities (anxiety and avoidance) and each other's sexual satisfaction in two samples of committed couples (Study 1: 126 cohabiting or married couples from the general community; Study 2: 55 clinically distressed couples). Partners completed the Experiences in Close Relationships measure (Brennan, Clark, & Shaver, 1998 ), the Caregiving Questionnaire (Kunce & Shaver, 1994 ), and the Global Measure of Sexual Satisfaction (Lawrance & Byers, 1998 ). Path analyses based on the actor-partner interdependence model (APIM) revealed that caregiving proximity mediated the association between low attachment avoidance and partners' sexual satisfaction in distressed and nondistressed couples. Sensitivity mediated this association in nondistressed couples only. Control mediated the association between men's insecurities (attachment-related avoidance and anxiety) and their partners' low sexual satisfaction in nondistressed couples. Attachment anxiety predicted compulsive caregiving, but this caregiving dimension was not a significant mediator. These results are discussed in light of attachment theory and their implications for treating distressed couples.
Wang, Shu-Mi; Lai, Chien-Yu
This article describes a nurse's experience using Neuman's Systems Model to care for a chronic psychiatric patient and his caregiver. The patient was diagnosed as suffering from neuroleptic malignant syndrome (NMS). Nursing care described in this article was administered from October 23 to December 4, 2007. The patient developed NMS in the third month of a three-month period of hospitalization, which endangered his life as well as the health of his caregiver. Nursing care was provided to the patient and his caregiver based on Neuman's Systems Model, which included assessments of intrapersonal, interpersonal, and extra-personal forces as well as of environmental factors affecting the health of the patient and his caregiver. The four nursing care issues identified included: existing self-care deficit, sensory/perceptual alteration, sleep pattern disturbance, and caregiver role strain. Following Neuman's systems model, primary, secondary, and tertiary prevention were used to strengthen the flexible lines of defense, internal lines of resistance, and supporting existing strengths of both patient and caregiver, as well as to conserve client system energy. Significant improvements in patient and caregiver abilities were apparent in nursing intervention outcomes. This experience shows the Neuman's systems model to be an efficient model in psychiatric nursing care.
Full Text Available Background and Objectives: Caregiver burden has been associated to both caregiver and patient factors, but little is known about their relationship to burnout. We aimed at investigating burnout correlations to the sociodemographic and clinical variables of a sample of caregivers of Alzheimer’s disease (AD outpatients. Methods: AD patients (n=69 and their caregivers completed a sociodemographic questionnaire, Maslach Burnout Inventory, Beck Depression and Anxiety Inventories. Patients were administered the Mini Mental State Examination, the Neuropsychiatric Inventory, Clinical Dementia Rating and the Functional Activities Questionnaire. Burnout and each dimension (emotional exhaustion, depersonalization, and reduced personal accomplishment were correlated to caregivers’ sociodemographic characteristics, burden of care, anxious and depressive symptoms as well as to the patients’ behavioral, functional and cognitive profile. Results: Burden of care was the only variable that associated to caregiver burnout. Emotional exhaustion was the most prevalent dimension and associated to all caregivers’ and patients’ clinical variables. Conclusions: Caregiver burden associated to burnout, and emotional exhaustion is the dimension mostly associated to dementia severity and psychiatric morbidity in caregivers.
Pompili, Maurizio; Harnic, Désirée; Gonda, Xenia; Forte, Alberto; Dominici, Giovanni; Innamorati, Marco; Fountoulakis, Konstantinos N; Serafini, Gianluca; Sher, Leo; Janiri, Luigi; Rihmer, Zoltan; Amore, Mario; Girardi, Paolo
The aim of the present review was to examine objective and subjective burdens in primary caregivers (usually family members) of patients with bipolar disorder (BD) and to list which symptoms of the patients are considered more burdensome by the caregivers. In order to provide a critical review about caregiver's burden in patients with bipolar disorder, we performed a detailed PubMed, BioMedCentral, ISI Web of Science, PsycINFO, Elsevier Science Direct and Cochrane Library search to identify all papers and book chapters in English published during the period between 1963 and November 2011. The highest levels of distress were caused by the patient's behavior and the patient's role dysfunction (work, education and social relationships). Furthermore, the caregiving role compromises other social roles occupied by the caregiver, becoming part of the heavy social cost of bipolar affective disorder. There is a need to better understand caregivers' views and personal perceptions of the stresses and demands arising from caring for someone with BD in order to develop practical appropriate interventions and to improve the training of caregivers.
Gebhardt, Mary Catherine; McGehee, Linda A; Grindel, Cecelia Gatson; Testani-Dufour, Linda
From the moment an adolescent with acquired brain injury (ABI) is admitted to the hospital, his or her caregiver develops hopes for the recovery and future of the patient; however, rehabilitation nurses have reported that these hopes are not always congruent with the nurse's observations of the adolescent's progression. The purpose of this study was threefold: (1) explore the caregiver's hope for recovery of his or her family member who has experienced an ABI, (2) compare the nurse's hopes for the patient with ABI to those of the caregiver, and (3) identify what caregivers and nurses do to maintain hope for recovery during the rehabilitation process. This qualitative study validated that in some cases there was a disconnect between caregivers' and nurses' hopes for recovery. Four themes related to the caregiver's maintenance of hope were identified: "the importance of family," "taking one day at a time," "knowing the patient better," and "spiritual strength brings me through." Enhancing the perceptual congruence between nurse and caregiver hope during rehabilitation will ultimately improve patient outcomes.
Hsieh, Julie; Li, Li; Lin, Chunqing; Luo, Sitong; Ji, Guoping
This study examined the burden experienced by various roles of family caregivers of people living with HIV (PLH), in particular spouses vs. non-spouses. A total of 475 family members of PLH were recruited from Anhui Province, China. Participants responded to a survey using the Computer Assisted Personal Interview method. The assessment collected data on demographic characteristics and their perceived caregiver burden, which was compared between spouses and non-spouses. Multiple regression models were built to identify factors associated with caregiver burden. About 64.4% of our study participants were female and the mean age was 42.1 years. Among various relationships to PLH, almost half reported being a spouse. Spouses reported significantly higher caregiver burden than non-spouses. In addition, older age and lower family income were significantly associated with higher level of caregiver burden. Among the subsample of spouses, significantly higher level of caregiver burden was identified among wives. Future studies should give special consideration to address the needs of female spouses in order to reduce their caregiver burden.
Ikenna K. Ndu
Full Text Available Background. Efforts to reduce child mortality especially in Africa must as a necessity aim to decrease mortality due to pneumonia. To achieve this, preventive strategies such as expanding vaccination coverage are key. However once a child develops pneumonia prompt treatment which is essential to survival is dependent on mothers and caregiver recognition of the symptoms and danger signs of pneumonia. Methods. This community based cross-sectional study enrolled four hundred and sixty-six caregivers in Enugu state. It aimed to determine knowledge of caregivers about danger signs of pneumonia and the sociodemographic factors that influence knowledge and care seeking behaviour of caregivers. Results. There is poor knowledge of the aetiology and danger signs of pneumonia among caregivers. Higher maternal educational attainment and residence in semiurban area were significantly associated with knowledge of aetiology, danger signs, and vaccination of their children against pneumonia. Fast breathing and difficulty in breathing were the commonest known and experienced WHO recognized danger signs while fever was the commonest perceived danger sign among caregivers. Conclusion. Knowledge of danger signs and health seeking behaviour among caregivers is inadequate. There is need for intensified public and hospital based interventions targeted at mothers to improve their knowledge about pneumonia.
Schnitzer, Patricia G; Covington, Theresa M; Kruse, Robin L
Most unintentional injury deaths among young children result from inadequate supervision or failure by caregivers to protect the child from potential hazards. Determining whether inadequate supervision or failure to protect could be classified as child neglect is a component of child death review (CDR) in most states. However, establishing that an unintentional injury death was neglect related can be challenging as differing definitions, lack of standards regarding supervision, and changing norms make consensus difficult. The purpose of this study was to assess CDR team members' categorisation of the extent to which unintentional injury deaths were neglect related. CDR team members were surveyed and asked to classify 20 vignettes-presented in 10 pairs-that described the circumstances of unintentional injury deaths among children. Vignette pairs differed by an attribute that might affect classification, such as poverty or intent. Categories for classifying vignettes were: (1) caregiver not responsible/not neglect related; (2) some caregiver responsibility/somewhat neglect related; (3) caregiver responsible /definitely neglect related. CDR team members from five states (287) completed surveys. Respondents assigned the child's caregiver at least some responsibility for the death in 18 vignettes (90%). A majority of respondents classified the caregiver as definitely responsible for the child's death in eight vignettes (40%). This study documents attributes that influence CDR team members' decisions when assessing caregiver responsibility in unintentional injury deaths, including supervision, intent, failure to use safety devices, and a pattern of previous neglectful behaviour. The findings offer insight for incorporating injury prevention into CDR more effectively.
Unson, Christine; Flynn, Deborah; Glendon, Mary Ann; Haymes, Elayne; Sancho, Diane
The Reconceptualized Uncertainty in Illness Theory (RUIT) was used to investigate antecedents to, appraisals of, and ways of coping with stressful caregiving. Four focus groups with caregivers (8 males and 16 females) of relatives with dementia were conducted; 15 cared for their parents and the remainder cared for their spouses. They were recruited from an adult care center and other community settings in a metropolitan area in New England. The discussions were audiotaped and transcribed verbatim. Two researchers independently coded the transcripts. Thematic analysis was structured according to the RUIT. The study is unique in its application to caregivers as opposed to patients and to all of the elements of the RUIT. Caregivers experience uncertainty in similar ways to patients with life-altering illness. Symptom severity--lack of personal boundaries, repetitive and aggressive behaviors, and the need for constant care--was the most frequent source of stress. The appraisals were mostly negative and included feelings of resentment, a lack of support from family members, financial strains, and loss of freedom. Self-improvement and self-care were important aspects of coping. Spirituality and humor were other coping skills that respondents used. Not all respondents said they were coping and some also reported that support from health care providers was not always helpful. Nurses can help improve coping by explaining the factors that contribute to caregiver strain and uncertainty, and by assisting caregivers to anticipate the effects of the caregiving role.
Lillian Flores Stevens
Full Text Available This was a hypothesis-generating exploration of relationships between caregiver training during TBI/polytrauma rehabilitation and caregiver mental health. In this cross-sectional study, 507 informal caregivers to US service members with TBI who received inpatient rehabilitation care in a Veterans Affairs’ Polytrauma Rehabilitation Center from 2001 to 2009 completed a retrospective, self-report survey. Embedded in the survey were measures of caregiver mental health, including the National Institutes of Health’s Patient Reported Outcome Measurement Information System (PROMIS Anxiety and Depression Short Forms, the Rosenberg Self-Esteem scale, and the Zarit Burden Short Form. Though no groups endorsed clinical levels, mental health symptoms varied by caregiver training category (Trained, Not Trained, and Did Not Need Training. Caregivers who did not receive training on how to navigate healthcare systems endorsed higher depression and burden and lower self-esteem than those who did. Caregivers who did not receive training in supporting their care recipients’ emotions endorsed higher anxiety, depression, and burden and lower self-esteem than those who did. Analyses also suggested a different association between training and mental health based on caregivers’ relationship to the care recipient and the intensity of care recipient needs. Potential hypotheses for testing in future studies raised by these findings are discussed.
Mendez-Luck, Carolyn A; Kennedy, David P; Wallace, Steven P
Little is known about the family care of older adults in Mexico and the role of women in this process. To begin to fill this knowledge gap, this paper describes how a small sample of low-income women in one Mexico City neighborhood conceptualized the caregiver role and identified the forms of assistance they gave to their older relatives on a daily basis. A grounded theory approach was used to collect and analyze the data. Forty-one semi-structured qualitative interviews were conducted with female caregivers. The age of participants was between 19 and 83 years, and care recipients between 56 and 92 years. The relationship of caregiver to care recipient was wife, daughter, daughter-in-law, grand-daughter, sibling, and other relative. The mean length of time providing care was 5 years. Most participants were not employed outside the home, and the median monthly household income was 2000 pesos. We found that caregiving was a life-changing event, with 27 of 41 participants viewing themselves as guardians. Caregivers' emphasis was on care recipients' emotional needs in order to provide "the most precious gift" of "time and attention." Two forms of assistance were 'keeping company' and 'watching out' as safeguards against poor health or further decline in health. These findings increase the cultural understanding of caregiving in Mexico. Further research is needed to test the caregiving concepts identified in this study.
Tremont, Geoffrey; Davis, Jennifer; Papandonatos, George D; Grover, Christine; Ott, Brian R; Fortinsky, Richard H; Gozalo, Pedro; Bishop, Duane S
Family caregivers of individuals with dementia are at heightened risk for emotional and mental health problems. Many caregivers do not seek assistance or become isolated in their caregiving role. Multi-component interventions have demonstrated efficacy for reducing emotional distress and burden, although these approaches are potentially costly and are not widely accessible. In response to these issues, we developed the Family Intervention: Telephone Tracking - Caregiver (FITT-C), which is an entirely telephone-based psychosocial intervention. The purpose of this paper is to describe the study design, methodology, and baseline data for the trial. This study uses a randomized controlled trial design to examine the efficacy of the FITT-C to reduce depressive symptoms and burden in distressed dementia caregivers. All participants (n=250) received a packet of educational materials and were randomly assigned to receive 6 months of the FITT-C intervention or non-directive telephone support. The FITT-C intervention was designed to reduce distress in caregivers and is based on the McMaster Model of Family Functioning, transition theory, and Lazarus and Folkman's Stress and Coping Models. The primary dependent variables were depressive symptoms (Centers for Epidemiological Studies - Depression) and burden (Zarit Burden Interview, Revised Memory and Behavior Problems Checklist - Reaction). Secondary outcome measures included family functioning, self-efficacy, and health-related quality of life. Results of the study will provide important data about the efficacy of a telephone-based approach to reduce distress in dementia caregivers.
Juan Miguel Rodríguez Caballero
Full Text Available The chronic character of the liver cirrhosis and its severe complications, including the patient inability to take care of himself, makes recommendable the availability of a caregiver living with the patient. This caregiver should be able to recognize the usual disorders associated to the cirrhosis. Additionally, an adequate information about the dietary habits and other recommended measures is mandatory for both the caregiver and patient to keep under control all the complications which appears once the illness has been diagnosed.The objective of the present study was to explore the knowledge of the cirrhotic patient’s caregiver regarding this illness. This was intended as a first step in order to develop education protocols that might reduce illness complications and the eventually avoidable hospital admissions. It also tried to explore and determine the fatigue of the personal caregiver in her role, as a diagnosis of the NANDA.We found a significant percentage of caregivers who were not aware of the relationship between constipation and encephalopaty as well as other data indicating insufficient education of the caregivers.
Marconi, Anna; Meloni, Giulia; Fossati, Federica; Lunetta, Christian; Bastianello, Stefania; Melazzini, Mario; Banfi, Paolo; Rossi, Gabriella; Corbo, Massimo
Clinical experience has shown an increase of behavioural and mood symptoms, especially in the areas of aggressiveness, sexuality and obsessiveness, during the late stages of ALS. The lack of conclusive data concerning these symptoms prompted us to assess the psychological aspects of ALS patients in advanced stages of the disease. Moreover, we evaluated the personality of their caregivers in order to analyse the relationship between the pair. For these purposes, we studied 10 patients with ALS in late stages (tracheostomized for 36 months) and their caregivers using a questionnaire specifically elaborated for patients' communication limits. To assess the state of anxiety and depression of both patients and caregivers, we used the Hospital Anxiety and Depression Scale (HADS). To investigate caregivers' personality, we administered the Big Five Questionnaire (BFQ). Data showed a trend of aggression and high level of obsessiveness in ALS patients, associated with several clinical characteristics. High levels of anxiety emerged in both patients and caregivers. Regarding BFQ, caregivers obtained higher scores in the dimension of Conscientiousness and very low scores in Extraversion and Emotional Stability. In conclusion, the study showed a potential and considerable effect of the long duration of ALS on patients' personality and caregivers' distress.
Zauszniewski, Jaclene A; Lekhak, Nirmala; Napoleon, Betty; Morris, Diana L
Almost 10 million women in the United States are caregivers for elders with dementia and many experience extreme stress that compromises their health. Acceptable and feasible interventions to teach them resourcefulness skills for managing stress may improve their health and facilitate continued caregiving. This study examined two commonly used methods for practicing skills taught during resourcefulness training (RT) to women caregivers of elders with dementia (n=63): journaling and digital voice recording. It also explored whether providing caregivers a choice between the two methods made it more acceptable or feasible. Qualitative and quantitative data were collected before, during, and after RT. Caregivers who recorded used more words (M=5446) but recorded fewer days (M=17) than those who journaled (M=2792 words and M=27 days). Similar concerns in relation to time management and practice method were expressed by women caregivers irrespective of practice method (journal versus recorder) or random versus choice condition. While journaling was more frequent than recording, more words were expressed during recordings. Perceived stress and depressive symptoms were unrelated to the number of practice days or word counts, suggesting RT acceptability and feasibility even for highly stressed or depressed caregivers. Because intervention feasibility is important for RT effectiveness testing, alternatives to the journaling and recording methods for practicing RT skills should be considered.
Corey, Kristin L; McCurry, Mary K
There are innumerable social and ethical factors which affect one's decision to become an informal caregiver for someone with chronic illness. The existential philosophy of Jean-Paul Sartre provides unique insight into human motivation and choice. The purpose of this paper was to examine the social and ethical influences on the individual's decision to become a caregiver through the lens of Sartrean existentialism and discuss how this unique philosophy can advance nursing knowledge. The factors affecting one's choice to become a caregiver were considered using the Sartrean existential concepts of The Other, human freedom, choice, bad faith, shame and authenticity. When explored through the perspective of Sartrean existentialism, the choice to become a caregiver is strongly influenced by fear of judgement from The Other and the resulting sense of social obligation and shame. However, the interaction with The Other often results in the loss of authenticity through the pursuit of bad faith. To avert bad faith, potential caregivers must act authentically by exercising their freedom to choose and by choosing an action for its own sake and not for some extraneous purpose. The results of this philosophical inquiry contribute to nursing knowledge by providing a unique, alternative perspective by which nurses may understand the choices of potential caregivers and support them in making authentic decisions. This perspective may provide a foundation for theory development and promote further nursing knowledge which will improve caregiver health and well-being.
Wittenberg-Lyles, Elaine; Parker Oliver, Debra; Demiris, George; Baldwin, Paula
This paper presents the theoretical framework and rationale for the ACTive intervention which proposes the use of video technology to facilitate patient and family participation in hospice interdisciplinary team meetings where plans of care are determined. It is surmised that patient and family involvement will improve communication and compliance in hospice care. An analysis of data from a pilot project of the ACTive intervention was conducted to explore active participation among family caregivers and the hospice team. Through the use of videophone technology caregivers participated in video-recorded team meetings. The actual communication behaviors of caregivers and team members were analyzed for active participation. Findings revealed that team-prompted caregiver participation was most common, however, team use of supportive talk in this context was considerably less frequent. The study also found that the team's use of active participation behaviors elicits caregiver active participation behaviors. The results of this study suggest the intervention was an effective way to involve family caregivers as active participants in the designing of care for their loved one. Findings also suggest that hospice staff would benefit from education and training on best practices for communicating with caregivers in the team meeting setting.
Jirovec Mary M
Full Text Available Abstract Background Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction. Methods The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables. Results Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p Conclusion Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.
Ndu, Ikenna K; Ekwochi, Uchenna; Osuorah, Chidiebere D I; Onah, Kenechi S; Obuoha, Ejike; Odetunde, Odutola I; Nwokoye, Ikenna; Obumneme-Anyim, Nnenne I; Okeke, Ifeyinwa B; Amadi, Ogechukwu F
Background. Efforts to reduce child mortality especially in Africa must as a necessity aim to decrease mortality due to pneumonia. To achieve this, preventive strategies such as expanding vaccination coverage are key. However once a child develops pneumonia prompt treatment which is essential to survival is dependent on mothers and caregiver recognition of the symptoms and danger signs of pneumonia. Methods. This community based cross-sectional study enrolled four hundred and sixty-six caregivers in Enugu state. It aimed to determine knowledge of caregivers about danger signs of pneumonia and the sociodemographic factors that influence knowledge and care seeking behaviour of caregivers. Results. There is poor knowledge of the aetiology and danger signs of pneumonia among caregivers. Higher maternal educational attainment and residence in semiurban area were significantly associated with knowledge of aetiology, danger signs, and vaccination of their children against pneumonia. Fast breathing and difficulty in breathing were the commonest known and experienced WHO recognized danger signs while fever was the commonest perceived danger sign among caregivers. Conclusion. Knowledge of danger signs and health seeking behaviour among caregivers is inadequate. There is need for intensified public and hospital based interventions targeted at mothers to improve their knowledge about pneumonia.
Lai, C; Luciani, M; Di Mario, C; Galli, F; Morelli, E; Ginobbi, P; Aceto, P; Lombardo, L
The role of spirituality on the psychological health was mostly investigated through studies conducted in terminally ill patients. However, there are not studies investigating the role of religious and spiritual beliefs on psychological state and on burden dimensions in caregivers. The purpose of this study was to investigate the association between spirituality, burden, and psychological state in caregivers of terminally ill cancer patients. Two hundred caregivers of terminally ill patients with cancer were interviewed using Prolonged Grief Disorder 12 (PG-12), Hamilton Anxiety Rating Scale (HAM-A), Hamilton Depression Scale (HAM-D), Caregiver Burden Inventory (CBI) and System of Belief Inventory (SBI-15R). The caregiver burden was positively correlated with anxiety, depression and PG-12 scores. The intrinsic spirituality was a significant predictor of the time-dependence burden (positively associated); and of the emotional burden (negatively associated). In caregivers of terminally ill cancer patients, higher levels of intrinsic spirituality predicted a higher amount of time devote to caregiving, and also protected against the emotional distress linked to providing assistance.
Romero-Martínez, Ángel; Ruiz-Robledillo, Nicolás; Moya-Albiol, Luis
Caring for children diagnosed with a chronic psychological disorder such as an eating disorder (ED) can be used as a model of chronic stress. This kind of stress has been reported to have deleterious effects on caregivers' cognition, particularly in verbal declarative memory of women caregivers. Moreover, high depressive mood and variations in testosterone (T) levels moderate this cognitive decline. The purpose of this study was to characterize whether caregivers of individuals with EDs (n = 27) show declarative memory impairments compared to non-caregivers caregivers (n = 27), using for this purpose a standardized memory test (Rey's Auditory Verbal Learning Test). Its purpose was also to examine the role of depressive mood and T in memory decline. Results showed that ED caregivers presented high depressive mood, which was associated to worse verbal memory performance, especially in the case of women. In addition, all caregivers showed high T levels. Nonetheless, only in the case of women caregivers did T show a curvilinear relationship with verbal memory performance, meaning that the increases of T were associated to the improvement in verbal memory performance, but only up to a certain point, as after such point T continued to increase and memory performance decreased. Thus, chronic stress due to caregiving was associated to disturbances in mood and T levels, which in turn was associated to verbal memory decline. These findings should be taken into account in the implementation of intervention programs for helping ED caregivers cope with caregiving situations and to prevent the risk of a pronounced verbal memory decline.
Reeves Katherine W
Full Text Available Abstract Background Informal caregiving is increasingly common as the U.S. population ages, and there is concern that caregivers are less likely than non-caregivers to practice health-promoting behaviors, including cancer screening. We examined caregiving effects on cancer risk behaviors and breast and cervical cancer screening in the 2009 Behavioral Risk Factor Surveillance System. Methods Women age ≥41 with data on breast and cervical cancer screening were included (weighted frequency 3,478,000 women. Cancer screening was classified according to American Cancer Society guidelines. We evaluated the association of caregiving with cancer risk behaviors (obesity, physical activity, alcohol intake, smoking status, and fruit/vegetable consumption and cancer screening (mammography, clinical breast exam [CBE], and Pap test using logistic regression overall and with stratification on age ( Results Caregivers had greater odds of being obese, physically active, and current smokers. Subgroup analyses revealed that caregiving was associated with obesity in younger women and whites, and with less obesity in older women. Also, caregiving was associated with smoking only among younger women and non-whites. Caregivers had greater odds of ever having had a mammogram or CBE, yet there was no association with mammogram, CBE, or Pap test within guidelines. Conclusions Caregiving was associated with some health behaviors that increase cancer risk, yet not with cancer screening within guidelines. Effects of caregiving by age and race require confirmation by additional studies.
This paper presents a sociocultural and historical literature review of gender related issues associated with family-centered caregiving for frail, elderly relatives in modern Japan. Issues addressed from a Japanese perspective are (a) women and social norms of caregiving, (b) feminine identity and caregiving, (c) women in the workforce, and (d) women and caregiving. Implications for research are also discussed.
This paper presents a sociocultural and historical literature review of gender related issues associated with family-centered caregiving for frail, elderly relatives in modern Japan. Issues addressed from a Japanese perspective are (a) women and social norms of caregiving, (b) feminine identity and caregiving, (c) women in the workforce, and (d) women and caregiving. Implications for research are also discussed.
Full Text Available Burden among care-givers of chronically ill patients has been widely investigated. However, there is no study evaluating perceived pressure on care-givers of kidney transplant recipients. This study aimed to evaluate the effect of care-giving to renal transplant recipients in Iranian Muslim population and to analyze factors associated with it. A cross-sectional study was carried out involving 41 care-givers of renal recipients. The Care-giver Burden Scale (CB Scale was used to evaluate the care-giver′s perceived burden and its correlates. Statistical analysis was performed using software SPSS v.13.0. P < 0.05 was considered significant. We found that increased care-giver burden was related to being married (p< 0.02, having lower education level (p< 0.05, and being a parent or spouse to the patient (p< 0.05. We also found significant adverse effects of patients′ second transplantation and gender (male on care-givers′ burden. There was no significant relationship between care-giver burden score and patients′ marital status, education level, operation time, age, donor type (cadaveric or living, and dialysis history before and after transplantation. In conclusion, care-givers experience strain, which has implications for research and service provision. Service providers need to identify those care-givers at risk of greater strain and help them in situations that cannot be altered. Future research should be conducted to identify the effects of interventions, on care-givers′ burden perception.