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.     

Mothers’ Experience of Post-Traumatic Growth in Pediatric Kidney Transplantation

ABSTRACT

Parenting a child with chronic kidney disease has a profound impact on the parental caregivers across social, emotional, and physical functioning. As the survival rates for children with chronic kidney disease increase, the demands on parents caring for these children intensify. The aim of this study was to understand the lived experience of being a mother of a child who has undergone kidney transplantation. Seven mothers caring for children with chronic kidney disease in Ontario, Canada participated in in-depth interviews that were analyzed according to the principles of hermeneutic phenomenology. The present study presents the findings concerning post-traumatic growth: personal strength, new possibilities, enhanced relationships, appreciation of life and spiritual change. Recognizing positive aspects of stressful situations and the potential for growth can impact the practice of social workers and other health-care professionals. Ultimately the assistance that is provided to parent caregivers can be improved with a better understanding of the whole experience.     

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.     

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.     

A perfect storm: Challenges encountered by family caregivers of persons with Alzheimer’s disease during natural disasters

ABSTRACT

Since Hurricane Katrina there has been a movement across the U.S. to examine best practice for disaster response within the aging population. However, little is known about the experience of natural disasters from the perspective of family caregivers of persons with Alzheimer’s disease and related dementia (ADRD). In this exploratory, qualitative study, family caregivers (n=27) were interviewed about their experience with the historic 2015 South Carolina flood. By using thematic analysis, themes were identified to better understand what unique challenges caregivers of person with ADRD experienced. While many caregivers stated they had experienced a natural disaster previously, none had ever done so in their current caregiving role. The caregiving role affected their ability to prepare for the storm and influenced their decision-making regarding evacuation and utilization of recovery resources. Thus, caregivers were confronted by a “perfect storm” of circumstances and uncertainty. Family caregivers need to have actionable emergency plans for disasters that are specific to their role as caregivers of persons with ADRD. Study implications also suggest the role social work professionals can have in educating, advocating, evaluating, and coordinating support to assist caregivers of persons with ADRD as a potentially vulnerable and at-risk population during all phases of disaster.     

Service Barriers of Chinese Family Caregivers in Canada

ABSTRACT

Family caregiving is a stressful process, especially when the complexity of being an immigrant or ethnic minority is added. This paper examined service barriers experienced by Chinese immigrant family caregivers in Canada and the predictors of different types of barriers. Principle component analysis was performed with the barriers reported loading onto cultural barriers, administrative problems, circumstantial challenges, perceived negative quality of services, and personal attitudes. Multiple regression analysis was used to identify the role of the culture-related factors in predicting service barriers, controlling for socio-demographic status of the caregivers'. The results show that financial factors significantly predicted the number and types of barriers reported by the caregivers. Culture-related factors were significant in predicting the total number of access barriers and the different types of barriers experienced by the family caregivers. The findings indicate the importance of culturally sensitive support for family caregivers in order to reduce the access barriers.     

Caregiver Isolation

Abstract

Caregiving to a partner with Alzheimer's disease results in isolation, which impacts on the help/service seeking behaviors of care givers. In-depth interviews done with caregiving wives found that they experienced multiple dimensions of isolation. A tentative ecological model of the dimensions of caregiver isolation is proposed. Research participants did not engage early in supportive help because they were not aware of their isolation, did not know about available supports, and were not identified by medical or social services personnel as needing support and assistance. Social workers need to be aware of the isolating effects of caregiving and reach out to caregivers to avoid or lessen isolation in their caring role.     

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia

ABSTRACT

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the “diagnostic phase,” (2) the “explorative phase,” (3) the “adaptive phase,” and (4) the “closure phase.” The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.     

Volunteerism and Older Adults

Abstract

This study was designed to examine differences in care-giver and care recipient characteristics, caregiving and work demands and resources, and role strain among Black, Hispanic, Asian, and White employed family caregivers. Significant differences were found with respect to caregiver and care recipient characteristics, types of assistance provided, and workplace support. Minority caregivers were economically disadvantaged and provided higher levels of care. Whites reported higher levels of role strain than Black and Hispanic caregivers, after controlling for caregiver and care recipient characteristics, demands, and resources. The findings indicate that care giving policies and programs must be broadened to incorporate the strengths and needs of ethnically diverse caregivers. Family practitioners need to be able to assess the applicability and differential impact of particular interventions, policies, and benefits, and to design relevant programs for ethnically diverse care-givers and their families.     

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.     

Relationships Among Caregiving,Income, Gender,and Health: A Cross-Sectional Examination of a Representative Sample of Older Americans

Although there is substantial evidence to support the effect of burden on caregivers, few studies have compared caregivers to their noncaregiving counterparts on the basis of health and well-being outcomes. This study examines the relationship between caregiving and health and whether other factors may have stronger influence on well-being measures. Using a nationally representative sample of older adults in the United States (N = 3,005), this study examines relationships between caregiving status, gender, and income, and 9 outcomes (self-rated physical and mental health, time since seeing a doctor, time since most recent pap smear or prostate-specific antigen [PSA] test, depression, loneliness, stress, anxiety), using logistic and linear regression models. Results support that paradoxically, caregiving was associated with increased likelihood of PSA test in male caregivers, although data also indicated higher levels of anxiety and stress, as might be expected. Income was associated with 8 of 9 outcomes, and gender predicted depression, anxiety, stress, and self-rated mental health. The study highlighted the importance of psychosocial stressors, such as income and gender, on the health outcomes of older adults who may be caregiving. Considering complexity of unique experience is necessary to accurately assess vulnerability to poor mental health or health-related outcomes.     

Toward Empowerment: ReVisioning Family Support Groups

ABSTRACT

Family support groups (FSG) have been recognized as an important and viable means for responding to the needs of family caregivers. How these groups work, however, is not well understood. The purpose of this qualitative exploratory study was to explore the impact of attending a family support group on the caregiving experience from the perspective of the family member. Personal, semi-structured interviews took place with eleven family members who had participated in at least one FSG. Data was analyzed for themes, using a constant comparative categorizing strategy. This analysis suggests that attending a FSG impacts the caregiving experience in four important ways: helping the family member to construct a self-identity as a ‘caregiver’; promoting a sense of personal competence; fostering the use of formal support groups; and creating a community context within which to experience the caregiving role. Cumulatively, these have the potential to contribute to a sense of empowerment for the family member by helping him or her to reposition the caregiving experience as more than a personal issue and promoting the emergence of a more collective voice.     

Familial caregivers of older adults

Caregivers of older adults face many obstacles as they balance family, career, and caregiving demands. Caregivers are at an increased risk for burden, stress, depression, and a variety of other mental and physical health complications. It is not uncommon for caregivers to receive some form of pharmacological therapy to treat the physical and mental health changes that may occur throughout their caregiving career. However, while pharmacological forms of treatment are invaluable, medications only may not be sufficient to treat the needs of caregivers. As such, geriatric professionals also have a responsibility to intervene with caregivers through psychosocial interventions. This paper provides an overview of caring, a summary of evidence-based psychosocial interventions for family caregivers of older adults, and recommendations for future interventions.     

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.     

Social-economic context of parent care: explaining Chinese caregivers' psychological and emotional well-being

This paper explores Chinese familial caregivers' depression and subjective burdens among the current caregivers. Data were collected in 1997-1999 with 110 caregivers who were then taking care of physically dependent parents or parents-in-law. Regression analyses were conducted to assess the factors that influence caregivers depression and subjective burden. Findings suggest that family and individual economic conditions are related to caregivers' depression. Caregivers' involvement in caregiving tasks is associated with caregivers' subjective burden. Poorer self-perceived health is related to higher report of caregivers' depression. The author argues that poorer health and unemployment at the time of drastic social and economic changes in China may have created psychological and emotional anxieties and depression for caregivers. The lack of financial and social stability may have deleterious effect for current caregivers in the future when they grow older and have to be cared for by their one-child generation children.     

The Potential of Information Technology to Navigate Caregiving Systems: Perspectives from Dementia Caregivers

Technologies designed to support caregivers of adults with Alzheimer’s disease and related dementias (AD/RD) have been developing at an increasingly rapid pace. However, little remains known about caregivers’ perspectives on how technologies can and should help them navigate larger service systems they interact with to engage in caregiving. This study involved in-depth interviews and a beta test of an AD/RD caregiver app to learn more about how they currently use technologies and how potential technological features and functions can best meet their needs. Thematic findings suggest a conceptual model for designing AD/RD caregiver technologies. The findings suggest that eHealth and individual technologies may not fully meet the needs of caregivers as they navigate the larger systems within which they provide care. Findings highlight the need to develop technologies for caregivers that are effective, easy to use, and more widely disseminated – especially for caregivers from disadvantaged backgrounds.     

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.     

Observing Women Caregivers’ Everyday Experiences: New Ways of Understanding and Intervening

This article discusses the practice implications of videographic research examining the everyday lived experiences of 5 women family caregivers of older adults with chronic illness. The women’s nonverbal expressions and gestures revealed how caregiving is accomplished and lived on a daily basis, in particular through emotion and body management, abnegation, and performance. The findings from this microethnographic study suggest that observing women caregivers’ everyday experiences can open new avenues for holistic intervention with this population. Observing nonverbal cues can offer a way for practitioners to better understand women caregivers’ realities, to question their practice, and to adapt their interventions accordingly.