Palliate Qualitative Study V1.0
Research type
Research Study
Full title
Qualitative multi-stakeholder insights into the actual and perceived barriers and opportunities of the Palliate intervention to support lay carer administration of anticipatory subcutaneous medications at home at the end of life.
IRAS ID
330936
Contact name
Leila Shepherd
Contact email
Sponsor organisation
Imperial College London
Clinicaltrials.gov Identifier
23IC8581, Imperial College London RGIT number
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Summary of Research
Design
Qualitative interview study using the theoretical framework of acceptability to inform the interview topic guide and analysis.Aims
To identify, describe and synthesise the actual and perceived barriers and opportunities to the Palliate intervention that supports lay carer administration of anticipatory subcutaneous medications at home at the end of life.Study outcomes
Primary - actual and perceived barriers and opportunities to the palliate intervention from multi-stakeholder perspectives.
Secondary - important and/or necessary outcome measures that should be included in a future clinical study.Population
-Patients with a diagnosis of advanced illness and current and/or bereaved carers.
Health and social care professionals (including but not limited to palliative care and district nurses, palliative doctors, general practitioners, pharmacists) and palliative care policy/decision makers.Eligibility
Public – those that have responded to social media adverts to participate and/or have taken part in the parallel user testing study (separate protocol and approvals obtained).
Patients and current carers, identified either via their care team as suitable to approach or those that have responded to social media adverts to participate
Bereaved carers, identified via their care team as suitable to approach or those that have responded to social media adverts to participate
Professionals – those identified through existing professional relationships as working in palliative/end of life care or with patients who are receiving palliative/end of life care (such as GPs or pharmacists, hospital doctors). Those who have responded to a social media advert or via the relevant Community of Practice (online forum) as interested in participating.
Policy makers/decision makers/senior leadership professionals.
Ineligible – Under 18 years of age and/or unable to communicate in English.Summary of Results
A qualitative study was conducted using semi-structured interviews with healthcare professionals, patients, carers, and policy-makers, informed by the Theoretical Framework of Acceptability (TFA). Data were analysed thematically using deductive analysis.
Thirty participants, including people with a diagnosis of advanced illness, carers, and a range of healthcare professionals involved in end-of-life care, provided perspectives on the acceptability of the intervention in end-of-life care. Participants described potential benefits, including improved symptom management, reduced waiting times for medication, and increased empowerment for families to support care at home. Concerns were raised about carer burden, emotional responsibility, and the need for professional oversight. Some participants spoke from direct experience of administering or supporting the intervention in practice, providing insights into both its practical value and the challenges of implementation.
While the Palliate intervention was generally viewed as acceptable and potentially beneficial, its broader implementation requires careful consideration. Its acceptability was conditional on carers receiving clear training, ongoing professional support, and being able to participate voluntarily. These findings offer new insights into the boundaries of lay caregiving and have implications for the implementation of family-administered end-of-life care within health systems. Further research is needed to evaluate its safety, impact, and feasibility in diverse contexts before wider adoption can be recommended.
REC name
West of Scotland REC 4
REC reference
24/WS/0026
Date of REC Opinion
7 Mar 2024
REC opinion
Favourable Opinion