Closing the Caregiving Health Gap: Alleviating Stress-Related Health Behaviors
Primary Presenter: Dana Carthron, PhD, RN, Michigan State University Presenter: Gaynell M Simpson, Ph.D., University of Alabama Presenter: Tracy Pressley, LCSW-PIP, Alabama State University Presenter: Kim Stansbury, PhD, North Carolina State University
Background. We address closing the health gap and advancing long and productive lives of older African American caregiving grandmothers. The impact of caring for grandchildren on grandparents’ health is a public health concern. Caregivers are at greater risk for morbidity and mortality compared to non-caregivers (Lee, Colditz, Berkman, Kawachi, 2003; Schulz & Beach, 1999). Women caregivers experience chronic stress as a result of their caregiving demand leading to adverse health outcomes (Pearlin, Mullan, Semple & Skaff, 1990). Our interest stems from a common concern that they are at a higher risk of chronic illness, disability and functional impairment due to their caregiving demands (Schulz & Beach, 1999). To buffer the adverse influence of stress, caregivers often rely on social support from family and/or community members. There are numerous findings about the consistent support they receive from family and community but minimal about the absence of some caregivers’ ability to solicit support from family members on a consistent basis. In this qualitative study we highlight how older African American caregiving grandmothers respond when faced with inconsistent social support from family and community. We explored heterogeneity on social support dimensions and the need to understand grandmothers’ survival strategies and how it affects their emotional and physical well-being.
Methods. To explore how caregivers managed within the context and circumstances of available to minimal social support we employed a qualitative study guided by an ecological perspective and the womanist perspective. Through these multiple lenses we increased our understanding of how participants’ gender, race, class, age, and access to resources shaped their experiences and perceptions of reality. In this case, we sought to understand how African American grandmother caregivers defined their own realities and survival strategies. The sampling technique for the study was purposive sampling of grandparent caregivers, which came from a community based prevention and intervention program targeted toward families “at risk” of child neglect. Participants selected for the study was based on the following criteria: African American, female, grandmother – maintained household with no parent present or one parent present and not involved in kinship foster care. The interviewed included demographics data to perceived social supports from extended family members and community; family and community stressors, survival strategies and mental well-being. Genograms and ecomaps were utilized to capture caregivers’ variations in their informal and formal social support structures. During an 18-month period, seven caregiving grandmothers participated in three face-to-face, audiotaped, semi-structured interviews. Data analysis occurred concurrently with data collection and was analyzed using constant comparative method (Strauss & Corbin, 1998). Once categories were defined, the researcher identified the specific properties and dimensions of each category and identified subcategories. The formulation of properties and dimensions assisted with the formulation of patterns along with their variations (Strauss and Corbin, 1998).
Results. Using constant comparative analysis, six interrelated themes revealed grandmothers operated along a continuum of reliable to unreliable social support. In the context of these varying ranges of social support, four sub- themes depicting their survival strategies were identified: being strong, self-sacrificing, receiving help and self- compassion. Utilization of each survival strategy was dependent on grandmothers’ perception of where they fell on the continuum of reliable to unreliable social support. Grandmothers who engaged in being strong and self- sacrificing engaged in stress-related health behaviors, such as emotional eating, smoking nicotine, disruptive sleep patterns and postponement of self-care.
Conclusion. In the literature, caregivers are often ‘glorified’ for their ability to manage their caregiving demand with minimal to no support from family and/or community. In this study, we identify caregivers’ stress-related health
responses to managing their role of caregiving with minimal to no social support from family and community. Myths of women being strong and managing the role of caregiving without any problems are detrimental to their physical and psychological health and well-being. African American women who have lived by this mythology may have a difficult time asking for help, for they have experienced times when they have asked for help and none was forth coming. Asking for and receiving help can also relate to the reality that caregivers need to care for themselves. If the caregiver becomes overwhelmed or stressed with the responsibility of caregiving, it can lead to physical and psychological consequences for the caregiver and lower quality of care to care recipient (Littlefield 2003). Therefore, it is essential that caregivers engage in healthy caregiving practices within a family context, which would allow them to engage in preventive health-care practices. We address closing the health gap and advancing long and productive lives of older African American caregiving grandmothers.
Kinship Provider Perspectives on Caregiving Related Health Issues
Ann Nicole Ripberger, MSW, Ph.D. Candidate, Michigan State University Steven Anderson, PhD, Michigan State University
Background/Rationale. Non-parental caregivers, mostly grandparents, care for about 2.3 million children nationally through court ordered foster care arrangements or more informally (Anderson, 2000; U.S. DHHS, 2014)). Research has documented high incidences of problems facing children and relatives engaged in these caregiving relationships (American Academy of Pediatrics, 2015; Lee, Clarkson-Hendrix, & Lee, 2016; Shakya, et al., 2012). Health problems are among the most prominent of these issues. For example, an American Academy of Pediatrics (2015) review found that 30% of foster children are likely to have a chronic medical condition. Relative caregivers have been found to suffer from high stress levels (Lee, Clarkson-Hendrix, & Lee, 2016), and other health problems related to aging may be exacerbated by caring for children with their own health issues.
Few studies have examined these health issues from the perspective of caregivers, and even these have either focused on particular problems (i.e., stress) or have included health as only one aspect in more general kinship caregiving examinations (Lee, Clarkson-Hendrix, & Lee, 2016; Schneiderman, Smith, & Palinkas, 2012). This externally funded study differs by focusing on caregiver perspectives regarding health care challenges, with a dual emphasis on issues facing children and their caregivers. The intent is to gain insights on health impacts of caregiving interactions, and to learn how training and other resources may alleviate such problems.
Methods. Focus groups with non-parental family caregivers were conducted in four communities (large city, suburban, urban, and rural locations). Twenty-six (26) caregivers caring for 56 related children participated, with group size ranging from 4-9. Nearly all participants were grandparent caregivers (average age 62.3) who were caring for children under court order or through family-negotiated arrangements. The focus groups were arranged through community-based agencies, and were led by two faculty members. The interview guide included questions on physical and mental health challenges facing caregivers and children in care; difficulties experienced in accessing care; and health-related resources used and needed. A brief individual questionnaire obtained caregiver background information. Sessions were audio recorded and transcribed. The transcriptions were coded thematically, and the relative frequencies of themes were identified. Participant quotes that exemplified leading themes also were identified, and an inventory of training and resource needs was created.
Results. Participants were more concerned about the health problems facing children in their care than about their own health. Nearly three-fifths (57.7%) indicated that at least one of the children they cared for had moderate or severe health problems. Concerns about children’s’ mental, emotional, or behavioral issues were cited most often, including both general worry about well-being and more specific maladies such as ADD/ADHD, anxiety, and anger and violence issues. About one-third of the participants reported that children under their care received counseling or therapy. Respondents mentioned physical challenges roughly half as often as mental issues, with asthma, dental, and nutrition concerns most often highlighted. Difficulties in accessing health care were the third most often mentioned cluster of health concerns.
Nearly 85% of caregivers rated their own health as excellent or good, with all but three of these respondents in the “good” category. Respondents more often reported physical than mental health problems, with these physical problems widely spread (i.e., high blood pressure, diabetes, arthritis). Consistent with earlier literature, stress most often was mentioned as a mental health concern. However, frustration with biological parents and service systems was cited much more often, and it appeared that such frustration often contributed to feelings of stress. Although not included in interview guide questions, caregivers commonly described the importance of their religious faith in supporting their caregiving. In addition, despite the challenges they faced, all of the respondents indicated they were somewhat satisfied (52.2%) or very satisfied (47.8%) with caregiving.
Conclusions: Kinship caregivers in this study exhibited considerable resilience as they engaged with their related children. However, the health concerns they experienced were challenging for many, and responsive provision of information and other resources merits attention. Caregivers most often cited support from peers and learning from the internet as useful, and exhibited some interest in training on selected health topics.
Grand Challenges Addressed: The proposal responds to two Grand Challenges: 1) Advance Long and Productive Lives, and 2) Ensure Healthy Development for All Youth. The caregivers upon whom this study focuses provide large amounts of service beneficial to society, and supporting their health is critical to their well-being and effective caregiving. The children served likewise are a high-risk population, and supporting care in a manner that fosters their healthy development has important societal benefits.
Understanding the Heterogeneity of Female Caregivers Providing Care for Their Spouse
KyongWeon Lee, MSW, Ohio State University
While an extensive body of research focuses on productive aging, health benefits of caregiving have been overlooked. Approximately 66% of family caregivers of frail older adults are female, making women the majority provider of long-term care in the United States (Family Caregiver Alliance, 2015). As women typically live longer than their spouse, it has become common for older women to care for her husband. The majority of spousal caregivers are older adults themselves and live with other challenges, such as physical, emotional, and financial difficulties, making themselves vulnerable for health problems. Highlighting one of the grand challenges, Advance long and productive lives, this study examines heterogeneity of female caregivers, particularly, those who are providing care for their spouse age 60 and older. Guided by the stress-and-coping model of caregiving (Pearlin, Mullan, Semple, & Skaff, 1990), the study examined 1) What is the nature of caregiving experience of female spousal caregivers, including caregiving duration, caregiving intensity, informal social network, utilization of formal support services, and accessibility to receive services? 2) Do levels of financial hardship and stress serially mediate the relationship between female spousal caregivers’ informal caregiving and self-rated health?
The study used data from the 2015 Family Caregiver National Survey conducted by the Administration on Aging. Out of 436 female spousal caregivers, almost all of them (95.6%) are the major caregiver for their spouse. Around 9.1% of female spousal caregivers provide care for other members in their family, other than their spouse, while 30% of female non-spousal caregivers provide care for more than 2 people at the same time (χ(1) = 69.09, p<.001). Approximately 45% of female spousal caregivers provide care for 24 hours a day. Around 40% of them have provided care for 2 to 5 years and 29.8% have provided care for 5 to 10 years.
The majority of female spousal caregivers (83.2%) are 65 and older and 45.8% of them are 75 and older. Also, 88.8% of female spousal caregivers do not work. On the contrary, almost half of female non-spousal caregivers are younger than 60, and 39.7% have a full-time or part-time job. Although only 17.9% of female spousal caregivers have annual household income higher than $50,000, compared to 32.1% of the counterpart, 30.9% of them have income between $30,000 and $50,000 per year. This proportion is bigger than non-spousal caregivers (24.9%).
Nearly 64% of female spousal caregivers have received respite care, from adult day care or in-home respite, which allows them a brief period of rest or relief. Also 67.6% of female spousal caregivers have connected with available services and resources, and 38.2% have participated in training or education, including counseling or support groups. Around 54% of female spousal caregivers have support from other family members or friends to arrange for the formal support services, while 83.8% of female non- spousal caregivers have additional informal support (χ(1) = 110.11, p=.001).
Female spousal caregivers have the greater level of physical strain (48.4% vs 31.1%), stress (58% vs 51%), and financial hardship (40% vs 25.2%), compared to female non-spousal caregivers. Female spousal caregivers’ informal caregiving is associated with their perceived physical strain (p<.001), stress (p=.001), financial hardship (p<.001), and poor self-rated health (p=.002). The serial multiple mediator analysis performed by the PROCESS Macro (Hayes, 2013) indicates that female spousal caregivers’ informal caregiving negatively affects self-rated health serially through perceived financial hardship and stress (0.05, 95% CI=0.031 to 0.075) and also through financial hardship, regardless of stress (0.107, 95% CI=0.059 to 0.164) but not through stress alone, independent of financial hardship (0.00, 95% CI=-0.026 to 0.026), controlling for age. There is no evidence of a direct effect of female spousal caregivers on self-rated health which is independent of these pathways of influence (-0.013, 95% CI=-0.170 and 0.145).
The findings indicate that female spousal caregivers feel a strong financial hardship. Female spousal caregivers are more likely to be unemployed and manage finances for both themselves and their spouse, which appears physically and emotionally difficult. Regardless of the amount of financial resources, the financial burden could be generated from a sudden role change in the household or a fear of financial insecurity that they could face alone later in their life. It is important to develop programs and policies that enhance female spousal caregivers’ health and well-being by recognizing their unique caregiving experience and challenges. Furthermore, it is critical to include a non-working spouse in retirement planning early on and promote education for young couples that encourages them to openly discuss issues and challenges that may arise in later life.