Journeying through Dementia Randomised Controlled Trial of a Psychosocial Intervention for People Living with Early Dementia: Embedded Qualitative Study with Participants, Carers and Interventionists

Abstract

Objective

To identify the barriers and facilitators to the implementation of a complex psychosocial intervention though a study exploring the experiences of participants, carers and interventionists during a trial.

Methods

Individual semi-structured interviews were conducted with participants, their carers, and interventionists from a sample of recruiting sites that took part in the Journeying through Dementia randomized controlled trial (RCT). Interview data were transcribed and analysed using framework analysis. Co-researcher data analysis workshops were also conducted to explore researcher interpretations of the data through the lens of those with lived experience of dementia. Triangulation enabled comparison of findings from the interviews with findings from the co-researcher workshops.

Results

Three main themes emerged from the interview data: being prepared; intervention engagement; and participation and outcomes from engagement. From these themes, a number of factors that can moderate delivery and receipt of the intervention as intended were identified. These were context and environment; readiness, training, skills and competencies of the workforce; identifying meaningful participation and relationships.

Conclusion

This study highlighted that the observed benefit of the intervention was nuanced for each individual. Mechanisms of change were influenced by a range of individual, social and contextual factors. Future research should therefore consider how best to identify and measure the multifaceted interplay of mechanisms of change in complex interventions.

Trial Registration

ISRCTN17993825.

Keywords:

• psychosocial
• self-management
• dementia
• wellbeing
• occupational therapy
• qualitative

Acknowledgments

All the participants, carers, facilitators, supervisors, and support staff from the four sites who took part in interviews. Members of the JtD PPI trial Advisory Group and Experts by Experience (based at the University of Bradford) and co-researchers. The sponsor Nicholas Bell, Sheffield Health and Social Care NHS Foundation Trust. Stephen Walters, Ellen Lee, Amanda Loban, Emily Turton, Esme Moniz-Cook, Tom Dening, Tracey Young, Peter Bowie, Daniel Blackburn and Jasper Palmier-Claus, Michelle Drury of the Trial Management Group (TMG). Catherine Hewitt (Chair), University of York, Wendy Mitchell, PPI Representative, Jennifer Wenborn, University College London of the Trial Steering Committee (TSC) and Mona Kanaan University of York, Jane Burgess, North East London NHS Foundation Trust and Emily Robinson, Kings College London of the Data Monitoring and Ethics Committee (DMEC) whom all advised on and critically reviewed the trial protocol including the fidelity assessment.

Data Sharing Statement

The datasets generated and analysed for this study will be available upon request from the corresponding author.

Ethics Approval and Consent to Participate

Ethical approval was obtained in July 2016 (ref no. 16/YH/0238) from the United Kingdom National Health Service Research Ethics. United Kingdom Health Research Authority approval was given (IRAS reference 199383) in August 2016. Participating sites gained permission from the local NHS Trust Research and Development Department prior to commencing research activities at a study site. The study was conducted in accordance with the Declaration of Helsinki.

Definitions

Author Contributions

All authors made substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; took part in drafting the article or revising it critically for important intellectual content; agreed to submit to the current journal; gave final approval of the version to be published; and agree to be accountable for all aspects of the work.

Disclosure

The authors report no conflicts of interest in this work.