Reasons for nonparticipation in the Valuing Active Life in Dementia randomised controlled trial of a dyadic occupational therapy intervention: An interview study

Abstract

Objectives: There is currently little known about why people decline to participate in dyadic, psychosocial dementia research. This interview study aims to explore the reasons why people declined to participate in the Valuing Active Life in Dementia research trial. Methods: Ten family carers of people with dementia, who were part of a dyad that had declined to take part in the randomised controlled trial, participated in qualitative telephone interviews to explore their reasons for declining. Inductive thematic analysis was used to identify themes. Findings: Two themes with related sub-themes were identified: (1) Protectiveness – protecting the person with dementia, themselves as carers and their current lifestyle; (2) ‘It’s not for us’ – the time commitment, and the possible unsuitability of the intervention, was seen to outweigh the perceived benefit of taking part. People with dementia were not always involved in the decision-making process, with carers stating the decision not to participate was made in the usual way as all their decisions. No apparent differences between the spousal and the child carers were apparent in the small sample. Conclusion: Recruitment to randomised controlled trials can be considered difficult or unfair because some participants will miss out on the desired intervention. However, this study shows that concern about the time and inconvenience of being involved in the trial can put people off research participation. Identifying possible reasons for declining research participation contributes to the design of future trials and recruitment strategies, so that the potential benefit is considered relative to the time and effort involved. Offering research opportunities to people with dementia and their families at the right stage of the dementia trajectory for their needs, facilitating personalised recruitment strategies with finely tailored researcher communication skills should help maximise recruitment, reduce attrition and deliver a more successful trial.

Impact of fan therapy during exercise on breathlessness and recovery time in patients with COPD: a pilot randomised controlled crossover trial

“…Future studies could usefully embed an assessment of the reasons for refusal to participate, as has been done in other challenging clinical areas, e.g. occupational therapy intervention for individuals with dementia [ 42 ].…”

Community Occupational Therapy for people with dementia and family carers (COTiD-UK) versus treatment as usual (Valuing Active Life in Dementia [VALID]) study: A single-blind, randomised controlled trial

“…Since the VALID research programme began in 2012, UK memory services have become well established, and the policy emphasis for earlier diagnosis and access to services means more people may receive occupational therapy input during the mild to moderate stage of dementia, although this is usually less than the COTiD-UK intervention and focused on just the person with dementia’s needs rather than being dyadic in nature [ 11 ]. Some potential participants declined to take part in the study as the family carers stated they were “managing fine” and therefore did not see the need for intervention [ 30 ]. Having said that, 227 of the 249 pairs allocated to take part in the intervention did set goals, of which 91% were fully or partially achieved.…”

Designing and Implementing an IT Architecture for a Digital Multicenter Dementia Registry: digiDEM Bayern

“…13,14 An additional challenge of dementia-related studies is that the participants are usually dyads, that is, a person affected by dementia and an informal caregiver. 15 To ensure that PWD from all over Bavaria, including rural areas, are included in the study, it is necessary to manage approximately 300 research partners (RPs) who are collecting data while conducting interviews. 10 RPs are facilities or persons involved in a dementia service like counseling centers, daycare facilities, or memory clinics.…”

“… 13 14 An additional challenge of dementia-related studies is that the participants are usually dyads, that is, a person affected by dementia and an informal caregiver. 15 …”