Health and social care professionals’ experiences of providing family-centred cancer care for families living in deprivation: a global qualitative study

Globally, one-in-twenty children experience the death of a significant adult, such as a parent, before adulthood. Deprivation is a key driver for health inequalities with cancer-related deaths greater for families living in deprivation. Deprivation is the state of observable and demonstrable disadvantage relative to the local community or wider society. The objective of this study was to explore health and social care professionals’ (professionals) experience of providing family-centred supportive cancer care to families living in deprivation, when an adult with significant caregiving responsibilities for children (<18) has incurable cancer. A qualitative study involving one-to-one semi-structured interviews with 44 professionals from 23 countries. Over 40% of interviews were conducted with professionals from low-and-middle-income countries. Data were analysed using reflexive thematic analysis. Two themes were identified: (1) intersectionality shaping the incurable cancer experience for families living in deprivation, and (2) navigating family-centred supportive cancer care in the context of deprivation. Professionals understood deprivation as multi-faceted with various dimensions intersecting. This included religious, cultural, financial, educational, environmental and social factors influencing a family’s incurable cancer experience. Professionals identified a range of unmet basic needs (housing, financial) for families living in deprivation that must be attended to prior to addressing broader psychosocial issues, such as conversations about the children’s understanding and involvement in the adult caregiver’s incurable cancer experience. More often, professionals felt challenged in their clinical role about how best to support families living in deprivation, perceiving the instrumental role of social workers, charities and Non-Government Organisations to providing family-centred supportive cancer care to this population. Stronger ties are needed between healthcare systems and social care and community organisations to enable clear, accessible pathways to address basic needs of families living in deprivation experiencing incurable cancer. This includes providing food and housing security, as well as emotional, social, financial and practical support such as ensuring legal guardianship for children. There is a need for professionals to provide culturally sensitive family-centred communication that aligns to the person’s beliefs, values and social realities.