The Lived Experience of African-American Informal Caregivers of Family Members with Alzheimer's Disease and Related Dementias.

The purpose of this qualitative study was to describe the lived experience of African-American informal caregivers of family members with Alzheimer's Disease and Related Dementias (ADRD) in a home environment. Using a qualitative, phenomenological approach, a purposive sample of 16 African-American informal caregivers completed an in-depth interview that lasted from 30 to 60 minutes. Four themes emerged: (a) a sense of obligation, (b) an arduous journey, (c) sentinel events, and (d) faith in God. Findings indicated that caregivers needed to be well-informed concerning the demands of caregiving and needed more assistance with the task of delivering care. Informal caregivers lacked support, knowledge, and guidance. Implications for the discipline of nursing include emphasis on family assessment, teaching, awareness of resources, and collaboration with healthcare teams.

Intra-family stressors among adult siblings sharing caregiving for parents.

AIM: The aim of this study was to describe a Neuman Systems Model-guided study of perceptions of family stressors experienced by adult siblings who share caregiving for their parents and the influence of these stressors on adult siblings' relationships. BACKGROUND: The task of providing informal care for disabled parents is often shared by adult siblings. Family stressors experienced as part of caregiving may affect the sibling relationship. DESIGN: A mixed-method study design was used. METHODS: Data were collected during 2013-2014 from 84 adult sibling caregivers. Seventy-two caregivers provided quantitative data for the Lifespan Sibling Relationship Scale and the Zarit Burden Scale and 79 provided qualitative data for the open-ended question. RESULTS: Adult siblings experienced mild-to-moderate levels of burden from family stressors when they share parental caregiving. The amount of burden from intra-family stressors was negatively related to the adult sibling relationship. Beneficial and noxious stressors were evident in the participants' responses to an open-ended question. CONCLUSION: The health of the parents affected the lives of adult siblings in both negative and positive ways. Although the majority of the adult siblings expressed a willingness to care for their parent(s) in an attempt to reciprocate the care, they had received from them, challenges emerged from dealing with family stressors.