Supporting families living in deprivation, when an adult with caregiving responsibilities for dependent children is at end of life with cancer: Pathways to intervention development.

Background One-in-18 children experience the death of a significant adult caregiver before adulthood. Families often feel unsure about how to prepare and support children for the end of life cancer experience. Children less informed and involved at end of life are at increased risk of adverse outcomes. Clear and honest communication between adults and children can mediate for adverse outcomes and facilitate better coping for families. Most families need support from health and social care professionals on how to navigate the end of life trajectory with the children. Current evidence on the challenges and needs of families in this situation is reflective of White, two-parent, middle-class families attending support services. Cancer-related deaths are higher for families living in deprivation and a key driver for health inequality in the United Kingdom (UK). One-in-four children in the UK live below the poverty line. Language and literacy, and access to support services are some of the barriers to families living in deprivation receiving adequate and equitable end of life cancer care. While healthcare teams are ideally placed to support adults as they prepare children for the end of life experience, clinicians consistently report a lack of knowledge and skill to provide this important aspect of family-centred cancer care, highlighting a need for training. A systematic review identified there is a dearth of evidence-based educational interventions available for clinicians to equip them with the skills and strategies on how to support families living in deprivation at end of life. Aims Underpinned by the MRC complex intervention development framework, this project focuses on the early-stage development of an intervention to equip health and social care professionals to promote adult-child communication for families living in deprivation when an adult with significant caregiving responsibilities is at end of life from cancer. Methods Five work packages (WPs) will be conducted. WP1: build and establish a PPI group with four adults and four children with lived experience of deprivation and experiencing the death of a significant adult with cancer to support this study and subsequent projects. WP2: undertake a scoping review to identify what resources are available for families when an adult is at end of life with cancer and understand how accessible, relevant and appropriate they are for families living in deprivation. WP3: conduct qualitative interviews with individuals across the UK living in deprivation to explore their experiences, challenges and needs of navigating cancer at end of life. WP4: conduct qualitative interviews with health and social care professionals to explore their experiences and views in supporting families living in deprivation at end of life. WP5: create programme theory and a logic model identifying an appropriate and suitable intervention that will inform subsequent grant acquisition. Anticipated impact A better understanding of the needs of families living in deprivation which can increase the frequency and quality of end of life family-centred cancer care. Findings will be attributable and inform a funding application to develop a co-produced intervention to equip clinicians with improved self-efficacy, skills, and knowledge on supporting families living in deprivation at end of life. A sustainable PPI group will be established to progress family-centred cancer care research for families living in deprivation.