Abstract
BackgroundFamily-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations.MethodsQualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach.ResultsFamily-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role.ConclusionOur findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.
Highlights
Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes and gives rise to psychological burdens on caregivers
The present study aimed to address this gap by exploring the role that caregivers play in providing clinical care for loved ones with cancer and their views regarding the supportive that they need to contribute to healthcare partnerships in this way, for those in identified priority groups for exposure to distress and negative health outcomes
Through a series of three focus groups and 10 interviews with 20 caregivers from diverse backgrounds, we qualitatively explored the role that informal, family-based caregivers as healthcare partners
Summary
Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes and gives rise to psychological burdens on caregivers. Family-based caregivers are patients’ spouses, siblings, children, parents and friends They experience substantial emotional distress due to their loved one experiencing cancer; this experience is compounded by the responsibility of providing clinical and healthrelated care, which impacts caregivers’ well-being, the safety of care and care outcomes [1]. Family-based caregivers manage and administer medications, coordinate treatment and appointments with a range of healthcare professionals and help manage diet and lifestyle supportive programs for their loved ones [4]. Providing this clinical care offers advantages for patient-centred care and sustainable delivery of care but may expose caregivers to challenges detrimental to their mental health and require psychosocial support. The psychological impacts on caregivers of providing clinical and health-related care, and the supports required for this to enable healthcare partnerships in cancer care, have not been investigated or addressed through supportive interventions [5,6,7]
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