Subjective quality of life of outpatients with diabetes: comparison with family caregivers' impressions and control group

BACKGROUND: There is a paucity of studies on comparison of quality of life (QOL) of type-1 and type-2 diabetes patients, and the impact of family caregivers' impressions on the QOL of patients. OBJECTIVES: To assess the subjective QOL of Sudanese diabetics using the WHOQOL-Bref, compared with a general population sample; examine caregiver-patient concordance; and assess the variables that impact on QOL. METHOD: The responses of 105 outpatients with type-1 diabetes and 136 with type-2 diabetes were compared with their family caregivers' impressions and 139 general population subjects. RESULTS: Patients were predominantly dissatisfied with their life circumstances. Type-1 diabetics had significantly lowest QOL scores, while the control group had highest scores. Having additional medical problems; having diminished sexual desire; and being young, unemployed and single were associated with poor QOL, but illness duration was not. Type-2 diabetics had lesser concordance with caregivers. The only predictor of patients' QOL was the caregivers' impression of patients' QOL. CONCLUSIONS: Caregivers' impression of patients' QOL impacted on outcome. Caregiver education is, therefore, important. The factors associated with QOL indicate a group that needs focused attention. The good QOL for type-2 and nonsignificance of illness duration encourage therapeutic optimism.     

Family caregivers’ attributions about care‐recipient behaviour: Does caregiver relationship satisfaction mediate the attribution‐distress relationship?

Objectives. The relations of caregiver attributions about care‐recipient's problem behaviour to caregiving relationship satisfaction and caregiver distress were examined. Design. This is a cross sectional study. Seventy‐five family caregivers of individuals diagnosed with various disabling health conditions were recruited and interviewed. Caregiver attributions (internality, intentionality, responsibility, and controllability), caregiving relationship satisfaction, and caregiver distress variables were measured. Results. Structural equation techniques tested an a priori model of the latent constructs of caregiver attributions and caregiver relationship satisfaction to caregiver distress. Maladaptive caregiver attributions (i.e., more trait, higher intentionality, higher responsibility, and higher controllability) about care‐recipients’ problem behaviours predicted lower caregiving relationship satisfaction, which in turn was predictive of higher caregiver distress. Unexpectedly, caregiver attributions were not directly related to caregiver distress. However, attributions had an indirect effect on distress through relationship satisfaction. Younger caregivers experienced higher caregiver distress. Conclusions. Caregivers’ explanations about care‐recipient's problem behaviour are indicative of their satisfaction in the relationship with the care recipient, and poor caregiving relationship satisfaction is predictive of caregiver distress. Caregiver attributions and relationship quality may be considered in interventions with family caregivers.     

Brief problem‐solving training for family caregivers of persons with recent‐onset spinal cord injuries: a randomized controlled trial

Our objective was to examine the effectiveness of a brief individualized problem‐solving intervention for family with caregivers of persons with recent‐onset spinal cord injury (SCI). Family caregivers were randomly assigned to a usual care control group (N=30) or an intervention group (N=30) in which participants were to receive three face‐to‐face problem‐solving training sessions (PST), educational materials, and telephone contacts as requested over the first year of caregiving. The participants included 60 caregivers (49 women, 11 men). The Social Problem‐Solving Inventory‐Revised, the Inventory to Diagnose Depression, and the SF‐36 were administered at baseline, 6 months and 12 months. Caregivers in the intervention group reported a significant decrease in dysfunctional problem‐solving styles scores over time; there were no observable effects for PST on caregiver depression. There was also some indication that the intervention had beneficial effects on caregiver social and physical functioning. An intervention for new caregivers featuring brief PST, education, and contact may be associated with lower dysfunctional problem‐solving styles over time and may promote certain aspects of caregiver quality of life. We also discuss limitations and implications of the present study. © 2009 Wiley Periodicals, Inc. J Clin Psychol 65: 1–17, 2009.     

Burden, reward and family functioning of caregivers for relatives with mood disorders: 1-year follow-up

BACKGROUND: Longitudinal caregiver studies of patients with mood disorders report no consistent pattern in burden over time. This naturalistic study of caregivers of patients with mood disorders assesses caregiver perceptions of burden, reward and family functioning at hospitalization and at 1 year follow-up. METHODS: Thirty-nine caregivers of patients with mood disorders were recruited during their relative's in-patient psychiatric hospitalization. Caregivers were given an assessment packet to complete at the time of enrollment and identical assessment packets were mailed to the caregivers at 1 year. RESULTS: Caregivers of bipolar disorder relatives reported less reward, more subjective burden and worse family functioning than depression caregivers, at recruitment. Bipolar caregivers showed a significant reduction in burden 1 year after their relative was discharged from the hospital, whereas depression caregivers showed no change at 1 year. At 1 year, overall family functioning was unchanged and was in the unhealthy range in all dimensions except for behavior control. Limitations of the study include the small sample size, the selective recruitment from a hospital setting where family members did not actively seek out help and the high drop-out rate. CONCLUSIONS: Caregivers of relatives with mood disorders show a different pattern of burden and reward, over time, depending on the patient diagnosis. In all cases, however, family functioning was significantly impaired. CLINICAL RELEVANCE: Short-term family interventions can be offered at the time of hospitalization to try to reduce caregiver burden and increase caregiver reward.     

Attachment representations and response to video-feedback intervention for professional caregivers

Interventions to improve caregiving may have different effects for persons with autonomous or nonautonomous attachment representations. The current study used the Adult Attachment Interview to investigate attachment representations of professional caregivers who participated in an intervention to improve interaction with children and adults with serious intellectual and visual disabilities. Caregivers (N = 51) completed a video-feedback interaction program. Twice during a baseline period and three times during the intervention period, each caregiver was videotaped during a standard situation with their client. Of the caregivers, 28 were classified as autonomous, 12 as dismissing, and 11 as preoccupied. Unresolved loss or trauma (n = 7) was not included in the analyses. Generally, interaction quality improved from baseline to intervention period as indicated by confirmation of signals, responsiveness to signals, and affective mutuality. Caregivers with dismissing classifications continued to show less confirmation of clients' signals. Caregivers with dismissing or preoccupied classifications improved their responsiveness to the level of caregivers with autonomous classifications. Attachment representations may modify in some ways the impact of interventions to improve caregiving.     

Essential information and support needs of family caregivers

The purpose of this study was to identify essential information and support needs of family caregivers for individuals with Alzheimer's disease or a related dementia, and to examine the relationship between caregiver characteristics and needs. Caregivers (n=128, response rate=49.4%) returned a survey detailing information needs, support needs, and personal information. The need for information concerning diagnosis/treatment and legal/financial issues was more important than general information about the disease. Specifically, information about health plan coverage was most important. Experienced caregivers also needed legal/financial information, as well as support. Female caregivers rated needs related to support as significantly more important than male caregivers. Practitioners should realize that caregivers may have different information and support needs and these needs may change throughout the caregiving experience.     

Quality of Life of Caregivers of Hematopoietic Cell Transplant Recipients

Caregivers are critical to recipient recovery after hematopoietic cell transplant (HCT); however, little is known about their long-term health and quality of life (QoL). In this study we surveyed 4446 caregiver–recipient pairs in the post-HCT period to describe their QoL and its determinants. In total, 849 caregiver–recipient pairs at a median of 6 years after autologous or allogeneic HCT responded. Among 849 responding caregivers at a median of 6 years post-HCT, 67% of caregivers were women and 68% indicated they were still providing care to the recipient. Mean and median QoL measures of caregivers were at or above general population norms; however, approximately 20% of caregivers reported poor QoL relative to general population norms. Multivariate analysis revealed that caregiver characteristics, including age, gender, and educational attainment, were important determinants of caregiver QoL. Additional determinants of caregiver QoL included recipient QoL, relapse after autologous HCT, and ongoing use of immunosuppression after allogeneic HCT. Additionally, the prevalence of depression and sleep disorders appear to be higher in caregivers than in the general population. We have identified a population of caregivers who may benefit from interventions aimed at improving QoL and health outcomes. HCT clinical practice should also consider caregiver well-being.     

Attachment representations and response to video-feedback intervention for professional caregivers

Interventions to improve caregiving may have different effects for persons with autonomous or nonautonomous attachment representations. The current study used the Adult Attachment Interview to investigate attachment representations of professional caregivers who participated in an intervention to improve interaction with children and adults with serious intellectual and visual disabilities. Caregivers (N = 51) completed a video-feedback interaction program. Twice during a baseline period and three times during the intervention period, each caregiver was videotaped during a standard situation with their client. Of the caregivers, 28 were classified as autonomous, 12 as dismissing, and 11 as preoccupied. Unresolved loss or trauma (n = 7) was not included in the analyses. Generally, interaction quality improved from baseline to intervention period as indicated by confirmation of signals, responsiveness to signals, and affective mutuality. Caregivers with dismissing classifications continued to show less confirmation of clients' signals. Caregivers with dismissing or preoccupied classifications improved their responsiveness to the level of caregivers with autonomous classifications. Attachment representations may modify in some ways the impact of interventions to improve caregiving.     

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland

ObjectiveTo examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience.MethodsNationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed.ResultsHealth professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers’ satisfaction with own health.ConclusionCaregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it.Practice implicationsBuilding health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.     

Resilience and distress among amyotrophic lateral sclerosis patients and caregivers

OBJECTIVES: The objectives of this study were to assess the prevalence of depressive disorders and symptoms and their correlates in patients with amyotrophic lateral sclerosis (ALS) and caregiver spouses and to identify dimensions of resilience as well as distress. METHODS: Fifty-six patients with ALS and 31 caregivers were interviewed on one occasion, and 20 patients were subsequently reinterviewed during a scheduled medical visit at an ALS center. Major measures included the Structured Clinical Interview for DSM-IV, the Beck Depression Inventory, the Schedule of Attitudes Toward Hastened Death, quality of life, spirituality, and degree of hopelessness. The ALS Functional Rating Scale, spirometry measures of forced vital capacity, and the Karnofsky Performance Index were used to assess physical status. RESULTS: Neither patients nor caregivers displayed significant psychopathology with respect to either current depressive disorders or scores on symptom scales. Depressive symptoms and psychological distress were not related to time since diagnosis, degree of disability, or illness progression during the period of observation. More interest in hastened death was associated with greater distress, but willingness to consider assisted suicide was not. Among caregivers, perceived caregiver burden was significantly associated with finding positive meaning in caregiving. Concordance between patient and caregiver distress was high, suggesting that attention to the mental health needs of caregivers may alleviate the patient's distress as well. CONCLUSIONS: Clinical depression or significant depressive symptomatology is not an inevitable or common outcome of life-threatening illness, even in the presence of major disability.     

Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

IntroductionUpsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia.MethodsPRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies.ResultsThe review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance.ConclusionOptimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment.Practical ImplicationsA paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted.     

Onset, timing and risk for depression and anxiety in family caregivers to heart transplant recipients

BACKGROUND: Family members adopt key caregiving roles in the maintenance of transplant recipients' health. While the bulk of the caregiving literature suggests that rates of psychiatric disorder should be high in these caregivers, the potential benefits of transplantation may instead lead to less distress than in other caregiving situations. We examined prevalence and risk factors for depressive and anxiety-related disorders in caregivers throughout 3 years after their family member's heart transplant. METHOD: A total of 190 caregivers (97% of eligible respondents) were enrolled. They received psychiatric and psychosocial evaluations at 2, 7, 12 and 36 months post-transplant. Survival analysis determined cumulative rates of psychiatric disorders and the impact of potential risk factors. RESULTS: Rates of depressive and anxiety-related disorders met or exceeded other caregiver populations' rates. By 3 years post-transplant, cumulative onset rates were: Major Depressive Disorder (MDD), 31.6%, Adjustment disorders, 35.4% (29.4 % with anxious mood); Post-Traumatic Stress Disorder related to the transplant (PTSD-T), 22.5%, Generalized Anxiety Disorder, 7.3%, and any assessed disorder, 56.3%. PTSD-T occurred primarily during the first year post-transplant. Other disorders' rates increased over the entire study period. Risk for disorder was elevated by positive lifetime history of psychiatric disorder, greater post-transplant caregiving responsibilities, and a poorer relationship with the patient. Risk for MDD was further increased by caregiver unemployment, and risk for anxiety disorders was further increased by younger age, low sense of personal mastery, and high use of avoidance coping strategies. CONCLUSIONS: Transplantation is associated with costs and benefits for not only patients but family caregivers. Caregivers' risk for psychiatric illness should be considered when developing interventions to promote families' long-term adjustment to the transplant process.     

"Timing It Right": a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home

OBJECTIVE: Discuss family caregivers of stroke survivors' changing needs for education and support across the care continuum. METHODS: Conceptual review. RESULTS: Stroke is a serious, sudden onset illness requiring care across the care continuum. The focus of care, the individuals primarily responsible for providing that care, and patients' self-care abilities change across care environments. Often family members who provide support also experience changes in their caregiving role. To date, however, interventions for family caregivers have not explicitly considered their changing support needs. Our "Timing It Right" framework highlights family caregivers changing experiences and corresponding support needs across the care continuum. Five different phases of caregiver support are discussed: (1) event/diagnosis; (2) stabilization; (3) preparation; (4) implementation; (5) adaptation. The first two phases occur during acute care, the third occurs during acute care and/or in-patient rehabilitation, and the final two phases occur in the community. CONCLUSIONS: Application of this framework has the potential to benefit future intervention efforts by identifying gaps in caregiver education, training, and support. PRACTICE IMPLICATIONS: Recognition of family caregivers changing support needs across the care continuum will assist health care professionals to provide more timely and appropriate support.     

Psychological adjustment in caregivers of school-age children infected with HIV: stress, coping, and family factors

OBJECTIVE: To assess for significant differences in psychological functioning between caregivers of HIV-infected children and caregivers of healthy children, and to examine the utility of applying a stress and coping model to caregivers of children with HIV disease. METHODS: Participants included caregivers of HIV-infected children (n = 36) and caregivers of a demographically matched control group of healthy children (n = 32). During their child's pediatric clinic visits, caregivers completed measures of psychological adjustment, stress, coping style, and family resources and support. They also completed a measure of their child's psychological adjustment. RESULTS: Caregiver psychological distress scores did not significantly differ between the HIV and control groups, and clinically significant rates of psychological distress were reported by more than a third of caregivers in both groups. Hierarchical multiple regression analyses revealed that independent of their child's illness status, stress and coping style were significant predictors of caregiver's psychological adjustment. In addition, caregiver psychological distress was a significant predictor of children's maladjustment. CONCLUSIONS: High rates of psychological distress were observed in caregivers of children with HIV disease; however, similarly high rates of psychological adjustment problems were found in caregivers of healthy children. Caregivers who reported high levels of daily stress and emotion-focused coping styles tended to report more psychological distress. Further, caregivers who reported more psychological distress also reported more internalizing and more externalizing behavior problems in their children, regardless of the child's illness status. These findings reflect the impact of poverty and environmental stress on caregivers' adjustment.     

Hemophilia Growth and Development Study: caregiver report of youth and family adjustment to HIV disease and immunologic compromise

OBJECTIVE: To assess differences in caregiver report of youth and family psychosocial adjustment associated with HIV infection and greater immune compromise in youths with hemophilia. METHODS: Caregivers of 162 boys with hemophilia 8 to 20 years old completed three youth and family questionnaires (Personality Inventory for Children, Revised [PIC-R]; Questionnaire on Resources and Stress [QRS]; Family Environment Scale). RESULTS: Caregivers of HIV positive (HIV+) youths reported greater health concerns, social withdrawal (PIC-R), physical and adaptive limitations associated with illness (QRS) in their sons, and more pessimism about their sons' future and negative attitudes about parenting (QRS). Caregivers of HIV+ youths with greater immune compromise reported greater concerns about their sons' health and greater pessimism about their futures, as well as lower levels of family integration and more limited family opportunities. CONCLUSIONS: Results suggest caregivers perceive psychosocial problems in HIV+ youths with hemophilia and their families; some problems are specifically associated with greater immune compromise.     

Facilitating Out-of-Home Caregiving Through Health Information Technology: Survey of Informal Caregivers’ Current Practices,Interests, and Perceived Barriers

Background

Many patients with chronic conditions are supported by out-of-home informal caregivers—family members, friends, and other individuals who provide care and support without pay—who, if armed with effective consumer health information technology, could inexpensively facilitate their care.

Objective

We sought to understand caregivers’ use of, interest in, and perceived barriers to health information technology for out-of-home caregiving.

Methods

We conducted 2 sequential Web-based surveys with a national sample of individuals who provide out-of-home caregiving to an adult family member or friend with a chronic illness. We queried respondents about their use of health information technology for out-of-home caregiving and used multivariable regression to investigate caregiver and care-recipient characteristics associated with caregivers’ technology use for caregiving.

Results

Among 316 out-of-home caregiver respondents, 34.5% (109/316) reported using health information technology for caregiving activities. The likelihood of a caregiver using technology increased significantly with intensity of caregiving (as measured by number of out-of-home caregiving activities). Compared with very low intensity caregivers, the adjusted odds ratio (OR) of technology use was 1.88 (95% CI 1.01-3.50) for low intensity caregivers, 2.39 (95% CI 1.11-5.15) for moderate intensity caregivers, and 3.70 (95% CI 1.62-8.45) for high intensity caregivers. Over 70% (149/207) of technology nonusers reported interest in using technology in the future to support caregiving. The most commonly cited barriers to technology use for caregiving were health system privacy rules that restrict access to care-recipients’ health information and lack of familiarity with programs or websites that facilitate out-of-home caregiving.

Conclusions

Health information technology use for out-of-home caregiving is common, especially among individuals who provide more intense caregiving. Health care systems can address the mismatch between caregivers’ interest in and use of technology by modifying privacy policies that impede information exchange.     

Problems of caregiving spouses of patients with dementia

Twenty-six caregiving spouses of patients with dementia in the Netherlands were interviewed to better understand their problems and needs. Special attention was paid to the information the caregiver received from their general practitioner. Nineteen caregivers indicated that they received little or no information about the disease and its possible consequences. Furthermore, they experienced many problems, because of the disease and the daily care they provided; eleven caregivers indicated a decrease in social contact, which resulted in further problems. Caregivers who sought professional help at an early stage experienced fewer problems in providing daily care. The results of this project suggest that in future health education policy special attention should be paid to the role of the general practitioner and to the importance of a caregiver's social network.     

Understanding the impact of family caregiver cancer literacy on patient health outcomes

OBJECTIVE: Family caregivers play a significant role in the diagnosis, treatment, and recovery of individuals with cancer. This position paper reviews and links the research on family caregiving and health information with the importance of cancer literacy. METHOD: Review of literature obtained through searching in Academic Search Premier, EBSCO, Communication and Mass Media Complete, PsychArticles, PsycInfo, and Health Source: Nursing/Academic Edition library databases. RESULTS: Family members are important sources of health information, informal caregivers who learn and enact medical procedures, and influential aspects of patients' healthcare and treatment decision-making, but are not seriously considered by healthcare practitioners or researchers in terms of assessing and improving health literacy. Further, very few studies have directly examined or acknowledged the potential importance of family caregiver health literacy. CONCLUSION: The extent to which family caregivers can comprehend the health information they receive along with the patient is crucial for the patient to achieve the most successful health outcome. PRACTICE IMPLICATIONS: To acknowledge the impact that family caregiver health literacy could have on patient health outcomes, targeted practical recommendations for understanding family caregiver health literacy in the cancer context are proposed: (1) family member health literacy should be assessed; (2) close relational partners should be trained as peer health educators; (3) written cancer information should be provided directly to family caregivers; (4) health interactions between family caregivers and patients should be improved; (5) theoretical perspectives into the understanding of family caregiver health literacy should be integrated into practice; and (6) patient and family caregiver health literacy should be improved.     

Spousal caregivers of dementia victims: longitudinal changes in immunity and health.

Providing long-term care for a demented relative profoundly affects caregivers' lives. We assessed changes in depression, immune function, and health in 69 spousal caregivers who had already been caregiving for an average of five years and 69 sociodemographically matched control subjects. Between the initial sample ("intake") and the follow-up data collected an average of 13 months later, caregivers showed decrements relative to controls on three measures of cellular immunity. Caregivers also reported significantly more days of infectious illness, primarily upper respiratory tract infections. Caregivers had a much greater incidence of depressive disorders than controls, with 25% of caregivers meeting syndromal criteria at intake and 32% at follow-up, compared with no cases among controls at intake and 6% at follow-up. Caregivers who reported lower levels of social support at intake and who were most distressed by dementia-related behaviors showed the greatest and most uniformly negative changes in immune function at follow-up.