Exploring the Experiences of Family Caregivers of Persons Living with Advanced Cancer in Ghana
Creators: Adewale, Bisi
Publisher: name: University of Alberta Library
Year: 2022

<p>Background: Every year, over 20 thousand new cancer cases are diagnosed in Ghana, the majority of which are at an advanced stage. Health services for persons living with advanced cancer are limited in Ghana and thus family members are usually the sole responsible caregivers. Purpose: The purpose of this study was to explore the experiences of family caregivers of persons living with advanced cancer receiving palliative care in Ghana. <br>
Research Design: A qualitative research methodology suitable to investigate health related phenomena, specifically Thorne’s interpretive description, was utilized. Study participants were recruited from the Palliative Care Outpatients Unit at a teaching hospital in Ghana. Following ethics and site approvals, 16 English or Twi speaking family caregivers living in the Greater Accra region, and seven palliative care providers participated in this study. Family caregiver participants took part in 50-75 minute audio recorded telephone interviews. Palliative care providers participated in two online focus groups. Interviews and focus groups were audio recorded and transcribed verbatim. Interviews in Twi were translated into English for the analysis. Focus groups were conducted in English. Data were initially sorted and coded; codes were then synthesized into categories that led to the development of themes. <br>
Findings: The majority of family caregivers were spouses and daughters between 18 and 72 years of age. The majority of palliative care providers had full-time positions, and had worked in palliative care for more than 2 years. An overarching theme of the experience of family caregivers was identified as ‘Darkness and Light’ with sub-themes of a) care that never ends, b) distressing and satisfying health care experiences, c) the pain we endure, d) spirituality, and e) valued relationships. There were two context-related themes, namely Socio-cultural influences, and Context of underlying disparities. The contextual themes portray the influence of family caregivers’ Ghanaian cultural views and beliefs in their experiences of caregiving, and the impact of serious socioeconomic disparities which often resulted in late access to cancer care, difficulties affording health care costs and the care of their relative. The overarching theme, darkness and light, reveals the serious struggles of family caregivers through their experiences of caring, as well as moments of relief when they found needed health care, and family and social supports. In addition to their own familial and work responsibilities, family caregivers engaged in never ending caregiving tasks with limited support, and performed multiple responsibilities such as addressing basic care needs, managing health care appointments, and monitoring and managing symptom control. Participants reported both distressing and satisfying experiences with health care, and described exceptionally positive experiences with the palliative care team. Participants referred to their own spirituality and their relationship with their ill relative as sources of strength. <br>
Conclusion: The experiences of family caregivers of people with advanced cancer reveal the multiple challenges they face, and the need for responsive and comprehensive health care services. Findings suggest a need for palliative care services in the community. Findings strongly show the need for policies to improve access to early cancer diagnoses, universal insurance to cover the cost of cancer treatment, and an urgency to improve early access to palliative care nationwide. </p>