Chronic Life-Limiting Illness and Informal Care in Ghana: Experiences of Older People and Their Family Carers

Abstract

Background: In Ghana, just as in many African countries, informal care for older people is derived from a shared culture of social responsibility, reciprocity and love. With a global increase in the older population and an increase in chronic life-limiting illness among older people, there is evidence of the emerging health, social and economic needs of older people living with chronic life-limiting illness. In rural Ghana, where there is limited access to adequate support services for chronic life-limiting illness management, the effect of globalisation on social change is impacting on the ability of the Ghanaian family systems to continue the historical culture of informal care for older people. However, there is limited evidence on the experiences of older people and their family carers with respect to chronic life-limiting illness and informal care in rural Ghana. Aim: To explore the experiences of older people and their family carers on chronic life-limiting illness and informal care in rural Ghana. Method: Underpinned by the transformative paradigm, a critical ethnographic research design was used as the logical framework for data collection and analysis of results. The research was conducted during 6 months of fieldwork in the Gomoa West District, Ghana. Four groups of participants, including 15 older people, 15 family carers and 5 health care professionals from a local hospital at the Gomoa West District, and 5 health care professionals from a national Palliative Care Clinic, were purposively sampled to participate in this research. An ethnographic interview method supported with daily fieldnote notes was used for data collection. The thematic analysis procedure suggested by Braun and Clarke (2013) was used for the analysis of each data set. Subsequently, conclusions were drawn based on the themes and their interpretation. Findings: Primary analysis of the data related to older people’s subjective experiences with chronic life-limiting illness included an increasing awareness of illness in the body, limitations in meaningful activities being experienced as loss of independence and dependency relationships being experienced as vulnerable. Themes related to experiences with informal care included sustaining family and social networks for care and support, the multiple roles of being a family carer, enablers to informal care, and the burden of, and resilience and barriers to, informal care. Problems identified for transformative change: Older people’s subjective experiences with chronic life-limiting illness were negative. Some older people were faced with a nuanced decision to self-isolate from society due to an increasing awareness of illness in the body. There were experiences of challenging social identity and self-worth because of loss of independence to maintain self-care activities and to meet personal social and economic role expectations. Furthermore, existing health, social and economic structures did not ensure inclusiveness of older people living with chronic life-limiting illness; thereby, increasing vulnerability in unlimited health, social and economic needs in the rural community. Dependency on inconsistent informal care increased vulnerabilities to loneliness, isolation, abuse, neglect and uncertainties. Also, the negative perception of older people who have become dependents induced feelings of shame, failure, burden and sadness among those with problematic social identity and self-worth. There was an existential difference between traditional care and informal care specific for older people living with chronic life-limiting illness due to evidence of demographic, epidemiological and social change that worsened the burden of care on family carers. Thus, the capacity of family carers did not match the required needs of their recipients, although the ability of family carers to remain resilient sustained care. Given the extended roles family carers play and the burden of care in informal care, the lack of specific services to support family carers manage chronic life-limiting illness for their care-recipients were notable. Conclusion: Rapid social change renders older people less powerful, and makes them vulnerable to social isolation, losses and challenging social identity and self-worth. Older people living with chronic life-limiting illness have unlimited unmet health, social and economic needs; thus, dependence on an inconsistent informal care is inadequate and may expose both older people and their family carers to marginalisation. The findings highlight the significant need for effective inclusive policy that take into consideration the impact of demographic, epidemiological and social changes on older people living with chronic life-limiting illness. As a society, we should ascribe the same importance of resourcing the health and social systems to supporting family carers to provide informal care, since both support structures work hand in hand to enhance the quality of life of older people living with chronic life-limiting illness. Additionally, it is imperative that further research among this group of people consider the factors that make them marginalised.