A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.     

Quality of Relationships Between Care Recipients and Their Primary Caregivers and Its Effect on Caregivers' Burden and Satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.     

Quality of Life among Compound Caregivers and Noncompound Caregivers of Adults with Autism

ABSTRACT

Children diagnosed with autism spectrum disorder (ASD) are reaching adulthood and require some form of lifelong care. Many parents continue caring for their adult children with ASD for as long as physically possible. As parents age, many also may provide care for another loved one, such a spouse or parent. This study compares compound (those providing care for multiple loved ones) and noncompound parental caregivers (those providing care solely for an adult child with ASD) on six dimensions of quality of life (enjoys life, life is meaningful, ability to concentrate, accepts bodily appearance, satisfied with self, and frequency of negative feelings). Specifically, this study determined the extent to which compound and noncompound caregivers’ quality of life differed. The present study included 320 parents (age 50 or older) of adult children (18 or older) diagnosed with ASD who completed a web-based survey. T-tests for independent samples compared the six dimensions and overall quality of life between compound and noncompound caregivers. Results indicated that compound caregivers were less able to concentrate and had fewer negative feelings than noncompound caregivers. Further research is needed to determine the effects of caregiving on the multidimensional aspects of quality of life.     

Caregiver Burden: A Comparison Between Elderly Women as Primary and Secondary Caregivers for Their Spouses

The overall purpose of this research was to examine the burdens of caregiving on elderly women who serve as primary and secondary caregivers for their impaired spouses. Fifty women 60 years and older identified as spousal caregivers participated in an in-person structured interview. Data were analyzed to compare primary caregivers (caregivers living with their spouses) and secondary caregivers (caregivers of institutionalized spouses) on the following factors: loneliness, depression, time constraints, perceived health status, financial status and perceived life satisfaction. Findings suggest that both groups of women are equally susceptible to the burdens inherent in caregiving. Time constraints were identified as the one major difference between caregiving groups. In addition, the results indicate that spousal caregivers, both primary and secondary, are an at-risk population and are especially vulnerable to loneliness, mild depression, financial worries and low life satisfaction.     

Gerontological Social Work Student-Delivered Respite: A Community-University Partnership Pilot Program

ABSTRACT

This study describes a community-university partnership to support a gerontological social work student-delivered respite program, the Houseguest Program (Houseguest). Houseguest was designed using a community-engaged scholarship model of integrating research, teaching, and service. Houseguest was piloted with a small group of community-dwelling, coresiding dementia caregivers and care recipients. We examined caregivers’ experiences with student-delivered respite using qualitative data analysis. Thematic analysis produced 8 themes: (a) respite from full time caregiving role, (b) information on caregiving strategies, (c) no-cost supportive services, (d) opportunity for care recipients to socialize, (e) tailored activities for care recipients, (f) rapport-building between students and family dyad, (g) reciprocity between students and family dyad, and (h) program continuation. We conclude with a proposed community-engaged scholarship model for dementia caregiving. Through a community-university partnership, Houseguest reduced the impact of caregiver burden and created an opportunity for students to serve families affected by dementia through respite and tailored activities.     

Challenges to and Strategies for Formal Service Utilization among Caregivers in an Underserved Community

Family caregivers face enormous challenges when attempting to oversee the medical, legal, financial, and daily affairs of loved ones with chronic or life-limiting illness. While formal services and agencies exist to assist caregivers with some of these tasks, caregivers in underserved communities do not utilize these services, or utilize them with unsatisfactory results. This study used focus groups (N = 5 groups) with underserved, minority caregivers (N = 22) to explore their experiences related to care provision, including barriers to support service use and challenges navigating systems related to the broad spectrum of caregiving demands. Thematic content analysis revealed three main themes: (1) prior difficulties with formal service use, (2) difficulties navigating financial, legal, and medical systems, and (3) caregivers’ personal strategies to address challenges associated with formal service use and systems navigation. Findings from this study identify underserved caregivers’ challenges in utilizing formal services, as well as caregiver-identified strategies for supporting their caregiving activities.     

Children's Attachment Relationships with Day Care Caregivers: Associations with Positive Caregiving and the Child's Temperament

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 temperamentally irritable children compared to less irritable children. Trained observers coded the attachment relationship in the day care setting using the attachment Q-sort. The observational record of the caregiving environment was used to assess children's individual experience of positive caregiver–child interaction in the classroom. When caregivers showed more frequent positive caregiving behavior, children showed more secure attachment behavior toward their primary professional caregiver. Temperament was not related to attachment security, nor did it serve as a moderator. Consequently, no support for Belsky's susceptibility hypothesis was found.     

Live Discharge from Hospice and the Grief Experience of Dementia Caregivers

When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the ‘live’ discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer’s disease, who experienced a ‘live’ discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual’s terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a ‘live’ discharge.     

Primary Caregivers and Chinese Elders’ Demand on Community Services

Abstract

The most influential model explaining the elderly’s service use is Andersen and Newman's model. But the applicability of the model on elders’ demand on community services has not been tested, especially in developing countries such as China. This research tested the applicability of the model by studying how primary caregiver relations to the elderly influence Chinese community-dwelling elders’ demand on community services. With a total of 2,124 respondents aged 65 and older who reported primary caregivers, six primary caregiver relations were examined: son, spouse, daughter, daughter-in-law, unmarried son and daughter, and other. Data came from the 2014 wave of the Chinese Longitudinal Healthy Longevity Survey (CLHLS). Results indicated that: (1) Elders cared for by daughters-in-law showed a significantly stronger tendency of expecting community services than elders cared for by other caregivers among both rural and urban areas. (2) Elders were least likely to expect community services in two cases: urban elders taken care of by daughters and rural elders whose primary caregivers were unmarried sons and daughters. Since Chinese elders cared for by different caregivers tended to seek community care in different manners, future research may study how suitable community service programs can be developed to well meet the needs of various elderly groups.     

Residential Respite Care: The Caregiver's Last Resort

Understanding the beliefs that caregivers of people with dementia have in regard to the use of residential respite may inform strategies to address low service utilisation. In this article, the application of theory in qualitative research with 36 caregivers provides insight into why most delay service use. Although some believe that service use may increase caregiving longevity, others position service use in conflict with normative values, and may hold beliefs that negative outcomes will result from utilisation. To address caregivers' beliefs to support service use, improvements are required to service promotion, as well as to models of care.     

Eldercare and employed caregivers: a public/private responsibility?

The National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP, 2004) have reported that 21% of the U.S. population provides family caregiving services to someone over 18 years old. Seventy-nine percent (79%) of these caregivers provide care for someone aged 50 or older. The majority of caregivers work full or part-time, and nearly two-thirds of employed caregivers make work-related adjustments in order to provide care (NAC & AARP, 2004). This article examines eldercare issues of employed caregivers, identifies current public and private policies addressing caregiver needs, presents a process model to assist organizations in creating family-friendly workplaces, and suggests social work roles that support family caregiving.     

Residential respite care: the caregiver's last resort

Understanding the beliefs that caregivers of people with dementia have in regard to the use of residential respite may inform strategies to address low service utilisation. In this article, the application of theory in qualitative research with 36 caregivers provides insight into why most delay service use. Although some believe that service use may increase caregiving longevity, others position service use in conflict with normative values, and may hold beliefs that negative outcomes will result from utilisation. To address caregivers' beliefs to support service use, improvements are required to service promotion, as well as to models of care.     

Continuing to Pay: the Consequences for Family Caregivers of an Older Person's Admission to a Care Home

This paper aims to discuss the reasons why caregiving in the community had ended for a sample of dependent older people, two-thirds of whom had dementia. Comparisons are made between the situation of a spouse caring for a partner and a daughter or son caring for a parent in a separate household. Spouses in the study had often sustained a greater burden before caregiving collapsedthan had daughters or sons. They were less likely, however, to have had support from the home care service. When caregiving in the community ended and the dependent older person entered a care home, family caregivers themselves often had a financial price to pay. Currently spouses have a legalliability to contribute to a partner's care costs. The implementation of this liability depended on individual local authority policies and the views of the individual social worker doing the financial assessment. Because of the UK's means-testing rules, daughters and sons were often penalizedbecause a parent's assets that they might have inherited had to be used to meet the care home costs. Resentment at being disinherited was related to the daughter's or son's family situation. Those with children or grandchildren themselves were far more likely to be angry than those without children.     

Identities in Transition: Women Caregivers in Bereavement

Population aging and longevity due to medical advances over the past few decades have meant that the approximately 44 million caregivers in the United States and eight million caregivers in Canada must provide more intensive levels of care and for longer periods of time. Consequently, caregivers are often profoundly affected by their caregiving role in emotional, psychological, physical, and financial ways. Thirty years of research on this population have helped to create a caregiver profile and identify the significant challenges for caregivers. One area explored to a much lesser extent is the postcaregiving period, when the caregiver transitions into a period of bereavement. This period can be particularly challenging for caregivers given the commitment inherent in the caregiving process. Research has shown that the emotional reactions of caregivers as well as practical challenges do not end with the death of the care recipient. In fact, complex realities, tensions, and responses continue well after the death into the postcaregiving period. This study of bereaved women caregivers explored their lived experiences in the postcaregiving phase. One central theme emerged and suggested that the experience of caregiving had an effect on the caregivers’ identities, which then influenced their bereavement processes and experiences.     

Depressive Symptoms among Former Spousal Caregivers: Comparing Stressors,Resources, and Circumstances of Caregiving Cessation among Older Husbands and Wives

Little research focuses on the mental health of caregivers (CGs) who stop providing care to their community-dwelling spouse. We examine depressive symptoms of former primary CG spouses who stopped caregiving over a two-year follow-up period when the care recipient (CR): (1) no longer has functional problems; (2) continues having functional problems; or (3) dies. Using data from the Health and Retirement Study (2000–2014), we located 2,370 couples who were both 50+ at baseline and where one partner provided help with ADL and/or IADL limitations but did not do so two years later. OLS regressions stratified by gender indicated that both male and female former spousal CGs whose CR died had significantly more depressive symptoms than those who ceased caregiving when their spouse did or did not still have functional problems. Former wife CGs who were older and whose husbands had more baseline ADLs had fewer follow-up depressive symptoms; wife CGs whose husbands had a nursing home stay had more depressive symptoms. Former husband CGs who had provided longer monthly hours of care had fewer follow-up symptoms. Findings underscore the importance of targeting mental and physical health services to both former caregiving husbands and wives, especially after spousal death.     

Family Caregivers of the Elderly

Two groups of primary family caregivers were interviewed; one whose older relatives received assistance from an inhome chore services program, the other whose relatives had been terminated from service due to budget reductions. Both groups of caregivers were found to be actively involved in providing care to their older relatives. The assistance that caregivers provided was similar whether or not their relative received chore services. No significant differences were found in the type of tasks they provided nor in the amount or length of time they have provided care. The data suggest that there may be limits to the assistance that these caregivers can provide and that care of the elderly beyond such limitations needs to be supplied by other sources. Caregiving may be influenced both by the particular circumstances of the caregiver and the individual needs of the older relative. These findings support the notion that there is a need for shared responsibility between the family and government, based on an understanding of the tasks that family caregivers are best able to provide.     

Exploring how workplace and social policies relate to caregivers’ financial strain

Informal caregiving is a critical component of the US long-term care system, but can have significant negative impacts on caregiver employment, finances, and well-being. An online survey of Colorado caregivers was piloted in 2016–17 to explore whether workplace and social policies such as access to paid family leave and public health insurance can buffer the negative financial impacts of caregiving and help caregivers to remain in the workforce. Using standardized measures, the survey assessed caregivers’ employment and financial status, well-being (physical and mental health, caregiver strain, benefits of caregiving), access to workplace supports, and covariates (e.g., caregiver demographics, health, social support, and service utilization). Ninety-five caregivers, recruited through community agency partners, completed the survey. Respondents were predominately female (89%), middle-aged (M = 57), non-Hispanic White (64%) or Latino/a (22%), and caring for a parent (40%) or spouse (30%) for over one year. Half (51%) reported working full- or part-time jobs, while 16.4% had stopped working because of caregiving. In multivariate regression modeling, predictors of financial strain included the care recipients’ financial strain and the caregiver’s reduction or ceasing of work. Medicare may be protective to minimize caregivers’ need to reduce or cease work. Implications for caregivers’ ability to stay engaged in the workforce and prepare for their own retirement are explored.     

Measuring Self-Appraised Changes following Participation in an Intervention for Caregivers of Individuals with Dementia

This study examined the psychometric properties of the Self-Appraisal of Change Scale, a measure designed to capture domains that are subjectively relevant to caregivers, associated with overall well-being, and amenable to change upon engaging in an intervention. Data from 107 caregivers of veterans with dementia enrolled in a randomized controlled trial of a telephone-delivered caregiver psychoeducation and support group program (the Telehealth Education Program (TEP)) were analyzed. The TEP, which was delivered by master’s prepared social workers and a nurse dementia care manager, targeted caregivers’ dementia-related knowledge, attitudes, and self-management skills. Analyses were conducted to determine the factor structure, reliability, validity, and measurement invariance of the scale. Factor analyses yielded a single-factor solution for the scale’s nine items. The reliability and construct validity of the scale were also supported by the analyses. Multi-group analyses suggested that meaningful comparisons of scale items and total raw scores can be made across usual care (UC) and intervention groups. The findings offer preliminary support that the scale may represent a valid and reliable instrument that captures perceived changes in key domains (e.g. caregiving knowledge, attitudes, and skill) following participation in a psychoeducational and support intervention trial.