Bereaved informal carers' experience of an interventional clinical research project at the end-of-life: a qualitative interview study.

BACKGROUND

This qualitative study was undertaken to obtain feedback from informal carers about their experiences of involvement in a cluster randomised trial of clinically-assisted hydration in the last days of life ("CHELsea II trial").

METHODS

Informal carers that had taken part in the trial post-bereavement postal survey, and had expressed an interest in taking part in further research, were approached about this post-bereavement qualitative study. Interviews were conducted remotely, using a semi-structured interview schedule that asked about the impact of the research on patient / their end-of-life care, the impact of the research on the informal carer, and the informal carers views on research at the end-of-life. The interview transcripts were thematically analysed.

RESULTS

Fifteen informal carers took part in the study prior to thematic saturation. Invariably informal carers reported that there was no negative impact on the patient or themselves, and were positive about taking part in future end-of-life research (if the situation occurred). The analysis generated three themes: (a) Purpose, helping, and no disruption; (b) Preparing for what was to come; and (c) Timing of research at the end-of-life.

CONCLUSIONS

This study confirms that research can be undertaken in patients at the end-of-life without negatively impacting the experience. Moreover, patients and their informal carers want to take part in such research, as it provides them with purpose during this time, and gives them the chance of helping future patients.

TRIAL REGISTRATION: ISRCT Registry (registry number - ISRCTN65858561) - registered 14/09/2021.