Abstract
Background: This PhD research sets out to qualitatively explore the cancer survivorship experiences of support and care continuity among UK Black African and Caribbean (BAC) cancer survivors and their family caregivers to understand their experiences of support and care continuity following the completion of initial cancer treatment in response to evidence of low support service uptake among them.Aim: The overall aim of this PhD research is to explore in depth the experiences of support and care continuity among UK BAC cancer survivors and their family caregivers following the end of initial cancer treatment; and examine the challenges UK cancer care providers face in supporting BAC cancer survivors and their family caregivers.
Objective 1: To examine the experiences of support and care continuity among UK BAC groups and how they navigate to available cancer support services following the end of initial cancer treatment.
Objective 2: To identify and analyse the support networks used by UK BAC cancer survivors and their family caregivers; and examine if their support networks and needs change over time.
Objective 3: To explore the challenges faced by UK BAC family cancer caregivers and stakeholders.
Objective 4: To inform UK cancer care stakeholders about study one’s findings and consider the potential implications of such findings for practice and policy for UK BAC cancer survivors and their family caregivers.
Methods: Study One involved 10 participants (five UK BAC cancer survivors and one family caregiver for each of them) recruited from community and religious support groups in the North of England. Data collection employed audio-recorded face-to-face semi-structured interviews involving a visual elicitation method (Pictor technique). The recorded interview data was transcribed and analysed using the Template Analysis approach. Content dyad analysis was applied on the Pictor charts. Study Two involved eight UK cancer survivorship stakeholders in an audio-recorded focus group discussion; data was transcribed and analysed thematically.
Findings: Study One identified a variety of similar themes for both survivor and caregiver participants illuminating cancer survivorship experiences among a subset of UK BAC population. The top-level themes are: Feeling ambivalent with cancer support and social services; Accepting the new self; My family- my pillar; My culture – my identity; and My faith played a key part. The dyadic analysis of the Pictor charts highlights the similarities and differences within and between dyads, and the individual differences within their support networks. Study Two identified five main themes: Perceived cultural challenges, challenges with supporting BAC family cancer caregivers, lack of information, identified existing good practices, and strategies to improve support service uptake.
Conclusions: The present research offers some significant contributions to knowledge and provides insight into UK BAC cancer survivorship experiences after initial cancer treatments, which they expressed as ‘feeling abandoned’, ‘uninformed’, and the lack of signposting and navigation to support services. Study One demonstrated the value of the Pictor technique which is a new approach to data collection among UK BAC groups. Study One participants’ support networks were made up of mostly family, church, and friends. Caregivers’ narratives shed light on the challenges of supporting BAC cancer survivors. Study Two highlights the challenges faced by UK cancer care providers in supporting BAC cancer survivors and their family caregivers, and points towards strategies for addressing them.
Implication for policy and practice. Overall findings from both studies provide insights which may contribute to address some of the inequalities in cancer care and support. The identified impacts of religion/faith and culture on participants’ cancer survivorship experiences suggest the need to consider the cultural dimension of cancer care in the UK; to improve cultural awareness with increased Black representation among UK cancer support providers. The findings also highlight the need for signposting and navigation services, for the involvement of religious leaders and inclusion of faith-based activities when designing cancer support services and support packages that target UK BAC cancer survivors and their family caregivers.
| Date of Award | 27 Jul 2023 |
|---|---|
| Original language | English |
| Supervisor | Nigel King (Main Supervisor) & Sally Arrey (Co-Supervisor) |