Impact of the Caring for Aging Relatives Group program: an evaluation

Caregiver support programs have been developed with the goal of alleviating the stress associated with the demanding role of caring for an older person. The majority of these programs, however, have not been formally evaluated. This study is a formal program evaluation which assessed the impact of a caregiver support program on its participants. Both the intervention and matched comparison groups included a convenience sample of 23 female caregivers. A quasi-experimental pretest-posttest design was used to measure morale, social support, and information. Findings showed there was a positive relationship between morale and social support. In the comparison group only, there was a positive relationship between morale and information in both the pretest and posttest. Within the intervention group, there was a significant increase (t = 2.79, p = 0.01) in the information scores between the pretest and posttest. Caregivers in the intervention group reported that the Caring for Aging Relatives Group (CARG) provided them with social support. The results of this study partially supported the usefulness of a caregiver support program; that is, information was gained, morale was maintained, and caregivers perceived the support program as helpful. Future research is needed to address what factors lead caregivers to attend a support program and what type of social support they receive from attending such a program.     

Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis.

Because of conflicting results, in order to clarify the state of the science it was necessary to do a systematic analysis of the literature on research testing the effect of interventions on the burden of persons caring for family members with dementia. The purpose of this study was to evaluate, using meta-analytic techniques, those intervention strategies (support group, education, psychoeducation, counseling, respite care, and multicomponent) designed to help caregivers cope with the burden of caregiving. Using meta-analytic methods developed by Glass, McGraw, and Smith (1981) and Hedges and Olkin (1985), 24 published research reports testing 27 treatments for caregivers of adults with dementia were synthesized. Overall, the analysis showed that collectively the interventions had no effect on caregiver burden. Only the category of multicomponent interventions significantly reduced caregiver burden. Burden may be too global an outcome to be affected consistently by intervention. Better and more precise measures are needed to evaluate the effects of caregiver interventions properly.     

Use of a Memory Notebook to Help Alzheimer Caregivers Manage Behavioral Excesses

Caregivers providing home care to someone with dementia often need assistance in managing the care recipient's behavioral excesses. Occupational therapists are uniquely qualified to provide needed services to these caregivers. This case study demonstrates the effect of educating a caregiver in the use of a memory notebook to reduce the behavioral excesses of her 87 year old mother with dementia. A single subject AB quasi-experimental design was used to assess the effects of the in-home caregiver education program. Results of the study suggest that memory notebook use was associated with a reduction in the rate of behavioral excesses for the care recipient. The discussion addresses the role of occupational therapy in dementia care and calls for further research on in-home treatment packages to address the behavioral excesses exhibited by individuals with dementia.     

A randomized, controlled trial of a patient/caregiver symptom control intervention: effects on depressive symptomatology of caregivers of cancer patients

In this study, we investigated whether a clinical nursing intervention focusing on teaching family caregivers and their cancer patients skills to better manage the patients' symptoms would reduce caregiver depressive symptomatology. Two hundred thirty-seven patient/caregiver dyads were recruited for the study. These dyads were randomized into either the 10-contact, 20-week experimental intervention group (n=118), which focused on assisting the patient and caregiver in managing patient symptoms and reducing emotional distress, or to a conventional care control group (n=119). A longitudinal random effects regression analysis did not indicate that the clinical nursing intervention was effective in decreasing caregiver depression over the 20-week course of the study. The relationship of the intervention to caregiver depressive symptomatology seems to be a complex one. We recommend further research to explore whether a lengthened intervention and/or delayed follow-up might reveal delayed positive effects of such interventions.     

Informal caregivers in home palliative care

Abstract

In order to deliver palliative care in line with the WHO definition, we must identify and support caregivers. This paper addresses some fundamental questions in defining, identifying and delivering interventions to caregivers. These considerations are key to organisation of appropriate health services, design and conduct of research, and specification and improvement of outcomes. Firstly we consider how we identify caregivers, and how we conceptualise a caregiver from the perspective of health service providers and researchers. We consider caregiver roles across cultures and settings. We then describe the challenges to selecting appropriate outcomes and what our expectations should be for intervention studies in terms of effectiveness, and the tools we use to assess and measure caregiver needs. We conclude with recommendations for future outcomes research.     

A nursing intervention to decrease depression in family caregivers of persons with dementia

The goal of this study was to evaluate a community-based psychoeducational-nursing intervention designed to teach home caregivers to manage behavioral problems of persons with Alzheimer's disease and related dementias (ADRD) using the Progressively Lowered Stress Threshold (PLST) model, and to compare this intervention with routine information and referrals for case management, community-based services, and support groups. Previous caregiver studies have overwhelmingly pointed to the adverse effects of caregiving on the caregivers' physical and mental health, and high prevalence rates of depression among caregivers of persons with ADRD have consistently been reported. Therefore, a primary aim was to evaluate the impact of the intervention on caregivers' affective responses, especially depression. Data from both the Profile of Moods States and the Geriatric Depression Rating Scale support the effectiveness of this intervention in decreasing depression among caregivers who received the experimental training. Additional analysis of factors associated with caregiver depression are also reported. The pivotal role of psychiatric nurses in the assessment and treatment of depression among caregivers of persons with ADRD is discussed.     

Providing Support for Caregiver Communication Burden: Assessing the Plain Language Planner Resource As a Nursing Intervention

ObjectiveTo elicit informal caregiver feedback about an mHealth resource and it's potential as a nurse-delivered intervention for caregiver communication support.Data SourcesFour focus groups with current oncology caregivers that involved caregiver use of the resource and response to a video demonstrating the resource as a nursing intervention. A brief assessment of the resource was collected for triangulation of data.ConclusionCaregivers rated the resource as overwhelmingly positive and reported that use of the resource gave an increased sense of preparedness. Caregivers shared ideas for future expansion of the resource, highlighted the need for user-responsive design, and described the need for a caregiver-centered tool.Implications for Nursing PracticeCommunicating complex terminology relating to treatment, side effects, and symptoms requires resources to meet health literacy needs. A nursing protocol for using the resource is provided based on feedback collected from caregivers.     

Outcomes of family involvement in care intervention for caregivers of individuals with dementia

BACKGROUND: Despite the increasing number of individuals with dementia relocated from caregiving at home to a nursing home, there is only a small body of literature examining the influence of institutional family-oriented practices on family member perceptions of care and family-staff relationships. OBJECTIVE: The study tested the effects of the Family Involvement in Care partnership intervention on family members' perceptions of their caregiving role, relationships with staff, and satisfaction with the care of relatives with dementia residing in special care units as well as the effects on staff attitudes toward families and staff satisfaction with a caregiving role. METHODS: A quasi-experimental design with nonequivalent groups and repeated pretest and posttest measures was used to examine the effects of the Family Involvement in Care intervention. The study recruited 14 Midwestern nursing home special dementia care units, matched by aegis and staff turnover, and randomized from matched pairs to experimental and control conditions. The samples included 185 family members and 895 staff. The Family Involvement in Care intervention is a protocol for family and staff negotiation of a written partnership agreement. Family caregiver outcomes were measured using instruments pretested for reliability and validity. Data were analyzed using hierarchical linear modeling. RESULTS: With adjustment for multiple tests, statistically significant beneficial intervention effects were found in three areas of family caregiver outcomes (emotional reactions to the caregiving role, perceptions of relationships with staff, and perceptions of care for relatives) and in one of three areas of staff outcomes (staff perceptions of the family caregiving role). For family members, effects were found for the measures assessing loss, captivity, staff disregard, resident activities, and physical care. Some of the intervention effects for family members were found only for caregivers of the same generation as the resident. For staff, effects were found for measures of dominion, disruption by family, and irrelevance of family. CONCLUSIONS: The results of the study indicate that the Family Involvement in Care intervention improves the caregiving experience of family members in nursing homes as well as nursing home staff attitudes toward family members. The intervention did not influence the perceived conflict with staff on the part of family caregivers or the perception of a partnership with family caregivers on the part of staff.     

Caregivers of chronically ill elderly: perceived burden

Family members play a major role in providing caregiving assistance to elderly persons and their families. The effect of stressors on family members caring for a physically or mentally ill person has been referred to as caregiver burden. It is an important concern and will become more so with the inevitable aging of the population. Community health and home health nurses must be able to recognize those factors associated with caregiver burden to effectively render care to their clients and families. This study examined caregiver characteristics and the degree to which these variables affect caregiver burden. Although much research focuses on caregivers of Alzheimers clients, this research utilized a wider variety of client diagnoses to examine caregiver burden of those clients. A sample representing 88 caregivers of elderly chronically ill persons was obtained from various sources in the community. Demographic data about the caregiver was collected. The amount of burden they experienced was recorded using the Burden Interview (Zarit et al., 1986). This study found that there was a positive correlation between increased activities of care performed by the caregiver and caregiver burden. This included both the provision of direct care such as bathing and indirect care such as running errands, preparing meals, and performing housework. It was found that sons, as caregivers, reported significantly less burden than did daughters or other relatives. Community health and home health nurses working with families in a caregiving situation have an opportunity to reduce caregiver burden. This is done by assessment of the caregiving environment and implementation of plans for early intervention.     

Caregivers of frail rural older adults. Effects of an advanced practice nursing intervention

Informal caregivers are responsible for providing the majority of post-discharge care for many frail older adults in rural settings. The purpose of this study was to investigate whether an advanced practice nurse (APN) intervention would promote more positive physical and emotional outcomes in caregivers of rural older adults who are frail and were recently discharged from urban-based hospitals. Thirty-two caregivers of frail rural elderly individuals were randomly assigned to treatment (APN intervention) and control groups (no APN intervention). Assessments of caregiver outcomes were collected via telephone interviews at 48-hour, 2-week, and 4-week intervals after hospital discharge of the frail rural older adults. Outcomes were operationalized as caregiver physical health and well being, and stress and burden. The former was measured using the Health and Daily Living form (HDL) and the latter by the Thoughts and Feeling and Time and Energy subscales of the Caregiver Burden Inventory (CBI). Additional information on caregiver problems and APN visit time was collected by the APN using the Omaha Classification System. Caregivers in the treatment group experienced significantly more positive physical and emotional health outcomes. The caregivers who received the APN intervention had higher self-rated emotional health scores, fewer emotional symptoms at Week 4, fewer depressive symptoms at Week 2 and 4, and lower Thoughts and Feelings stress scores at 48 hours than the control group. Findings support the importance of addressing the needs of caregivers post-discharge and the ability of APNs to improve post-discharge outcomes for home health care recipients and their caregivers.     

Home caregivers of the person with advanced cancer: an Australian perspective

Australian palliative care services are predominantly community based, with an emphasis on enabling the person to live at home for as long as possible. Home care of the person with advanced cancer receiving palliative care in the community depends largely on the availability of a family caregiver. Family caregivers are required to assess, monitor, and deliver complex therapeutic interventions such as pain and symptom control, including the administration and adjustment of complex medication regimens. This article reports a study of 42 family caregivers providing home care to persons with advanced cancer. This study sought to describe a number of caregiver variables that may influence reactions to caring roles and caregiver well-being. The study found that family caregivers are significantly involved in symptom management, and that they take on almost total responsibility for routine household tasks. In addition, the caregiver role has a negative impact on caregiver health, schedule, anxiety, and energy. However, caregivers find significant meaning in their role and feel relatively well prepared for caregiving. The results of this study support the applicability of the vast international literature on caregiver issues for the Australian setting and suggest the need to move toward development of caregiver-focused nursing interventions.     

Social problem-solving partnerships with family caregivers.

The goal of this pilot study was to compare the effectiveness of home and telephone social problem-solving partnerships on primary family caregiver outcomes and to determine whether certain caregiver and stroke survivor characteristics influenced these outcomes. Thirty primary family caregivers were assigned to either a home visit, telephone contact, or control group. A registered nurse trained caregivers in the intervention groups in a series of seven telephone calls or home visits during a 12-week period to use social problem-solving skills in managing caregiving problems. Primary family caregiver outcomes were compared before the intervention, during the intervention (at 2 and 5 weeks after discharge), and after the intervention (at 13 weeks after discharge). Compared to the home and control groups, the telephone group had a significant reduction in depression, more positive problem-solving skills, and greater caregiver preparedness during the intervention, and improved, but nonsignificant depression, problem-solving, and caregiver preparedness scores postintervention. Race, age, and education were significant for selected outcomes.     

Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: Community facilitator pilot

Background: Although the unit of care in palliative care is defined as the patient and their family, there are few rigorous studies on how to improve support for family and friends as they take on the role of caregiver for someone at the end of life. Aim: Separate to patient evaluation and care, this pilot study aimed to define the feasibility and possible outcome measures to evaluate routine assessments and supports specifically for caregivers. Design: In a quasi-experimental design, two communities were included: one received standard specialist palliative care support and one additionally was allocated to a community network facilitator who assessed caregivers' needs and helped mobilize the caregiver's own support network or initiated contact with other community supports in three planned visits. Data were collected at baseline, 4 and 8 weeks using three caregiver assessment tools. Within group comparisons were made using Wilcoxon signed rank test and between group using the Mann-Whitney U-test. Participants: Sixty-six caregivers participated. Results: At 8 weeks, participants in the intervention arm showed significant within-group improvement in caregiver fatigue, sufficient support from others, decreased resentment in the role, greater confidence in asking for assistance and were better able to find resources and support. No between-group changes were seen in this pilot study. Conclusions: There were objective measures of improved support within the intervention group over time for caregivers through the active engagement of the community network facilitator. This pilot supports the case for an adequately powered study.     

Factors associated with caregiver burden in heart failure family caregivers

Fifty caregivers and 41 heart failure patients participated in a study examining the association of caregiver characteristics and the caregiving environment on caregiver burden. Using a cross-sectional design, caregivers were interviewed face-to-face using a caregiver characteristic/demographic tool designed for this study, the Centers for Epidemiological Studies Short Depression Scale, the Caregiver Reaction Assessment questionnaire, and the New York Heart Association Functional Classification Guide to obtain the caregiver's perception of patient disease severity. Patient medical records were assessed following caregiver interviews for patient demographics, comorbidities, and ejection fraction percentages. Significantly higher levels of burden were found among Caucasian caregivers, those caring for other relatives besides the patient, unemployed caregivers, and single- versus two-family caregivers (respite caregiving). Fifty-one percent of the variance in caregiver burden was accounted for by the variables caregiver advanced age, higher caregiver hours, more caregiver physical health problems, higher levels of caregiver depressive symptoms, and more patient comorbidities. This article concludes with implications for nursing practice and future research.     

Cognitive-behavioral intervention for homebound caregivers of persons with dementia.

BACKGROUND: Family caregivers experience considerable stress in their management of specific behaviors of persons with dementia. OBJECTIVE: To examine the effects of an 8-week cognitive-behavioral (C-B) intervention tailored to the specific deficits of persons with dementia (PWDs) on selected outcomes for homebound caregivers and the functional status of the PWD. METHOD: The design was a two-group randomized trial with measures taken at baseline, 4 weeks, 8 weeks, and 12 weeks. Subjects were 65 caregiver-care recipient dyads. A majority of the 65 female caregivers were spouses with a mean age of 66.5 years. Thirty-one women who received the C-B intervention were compared to 34 who received the attention-only (A-O) placebo telephone calls. Coping strategies, perceptions of caregiver burden and satisfaction, and emotional and physical health were assessed at the four points in time. RESULTS: Results indicated a time by group interaction in depression, with less depression in the C-B than the A-O group. Both groups experienced a significant reduction in anxiety, and a significant consistent decrease in satisfaction over time. Both groups also demonstrated decreased use of emotion-focused coping strategies. CONCLUSION: The results suggest a plausible effectiveness of the C-B intervention in preventing the progression of depression. Suggestions for future research are provided.     

心理社会干预对精神分裂症患者及监护人的动态效果

目的:了解在社区中对精神分裂症患者及监护人经过心理社会干预后的效果。方法 :在城乡一体的社区内对精神分裂症患者及监护人进行3年的心理干预追踪随访。结果 :干预组患者的家庭职能、社交能力、社会功能、生活质量、复发率和监护人的心理状态改善明显好于对照组。结论 :坚持对精神分裂症患者及监护人的长期心理社会干预 ,有利于促进精神康复、减少复发、社会稳定     

Sources of strength perceived by females caring for relatives diagnosed with cancer: an exploratory study from India

Goals of work The aim of the study was to explore sources of strength in the process of caregiving from the perspectives of Indian women caring for relatives suffering from cancer. In addition, it aimed at exploring self-reported occurrence of positive moments and personal changes experienced during the care-giving process. Materials and methods Twenty female caregivers participated in two to four interview sessions. The average caregiver was about 40 years old. Spouses and children as caregivers had the highest representation in the sample. The care recipients had heterogeneous cancer diagnoses and were undergoing active treatment. Main results Religious beliefs and practices and positive appraisal of the caregiver role in terms of “value” emerged as the most frequently cited intrapersonal sources of strengths. Religious beliefs and practices were linked with positive appraisals of care-giving demands and experience of hope. The participants also described several interpersonal sources of strengths, e.g., family, medical fraternity, and care recipients themselves. The narratives of the participants indicated the occurrence of positive moments as well as perceptions of positive personal changes during the care-giving process. Conclusions The findings have implications for further research on positive aspects of caregiving as well as for development of intervention components that may help caregivers maintain and enhance their well-being.