Improving access to and delivery of community care around death
Research type
Research Study
Full title
Improving access to and delivery of community care around death: A qualitative approach to understand the voices of patients, carers, and clinicians.
IRAS ID
363496
Contact name
Sarah Mills
Contact email
Sponsor organisation
Research Governance, University of St Andrews
Clinicaltrials.gov Identifier
HHL2023-1285375804, Funder reference
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Introduction:
Community palliative and end-of-life care in Scotland is fragmented. People nearing the end of life and their carers can struggle to find timely help, especially out of hours, and clinicians often lack up-to-date information. This study will gather views from patients, unpaid carers and clinicians to inform two practical service models: a 24/7 clinician-led Single Point of Access (SPOA) helpline, and a shared digital care-coordination tool called BRIDGE.Methods:
Qualitative study across at least three Health Boards, including NHS Fife. We will use semi-structured interviews, joint focus groups, and co-design workshops. Target samples are 15–30 patients and or advocates, about 15 clinicians, 3–4 focus groups with 8–12 participants each, and two multi-stakeholder workshops. Purposive sampling, supported by the Fife Centre for Equalities, will include protected and marginalised groups. Translation will be made available for non-English speaking participants. Sessions will be by secure video call, telephone, or in person off NHS sites. Activities are audio-recorded, transcribed, anonymised, and analysed using reflexive thematic analysis to identify themes that describe needs, preferences and workable solutions.Expected results:
Findings will describe what matters most to patients, carers and clinicians when accessing and delivering care around death, how acceptable SPOA and BRIDGE are, and what alternatives or additions are preferred. We will produce a stakeholder-agreed specification for a SPOA helpline and the minimum useful dataset and features for BRIDGE, including what information should be visible to whom and when.Discussion:
This work will not change clinical care during the study. It will provide a clear, user-led blueprint for better continuity, communication and access in community palliative care, with particular attention to out-of-hours needs and equity. Risks are low and mainly relate to possible emotional distress. Mitigations include clear information, at least 24 hours to decide, the right to skip questions or stop at any time, and withdrawal up to 7 days after participation, before anonymisation. Data are stored securely on University systems, with audio deleted after checked transcription. Results will be shared with participants, services and policymakers to support next steps in service development.REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
25/NE/0233
Date of REC Opinion
19 Dec 2025
REC opinion
Favourable Opinion