Mundy Jacqueline, Stansfeld Jacki, Orrell Martin, Cartwright Martin, Wenborn Jennifer
Essex Stroke Hub Team, North East London NHS Foundation Trust (NELFT), London, UK.
School of Health Sciences, City University of London, London, UK.
SAGE Open Med. 2020 Oct 15;8:2050312120958926. doi: 10.1177/2050312120958926. eCollection 2020.
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.
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.
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.
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.
目前对于人们拒绝参与二元心理社会痴呆症研究的原因知之甚少。这项访谈研究旨在探究人们拒绝参与“重视痴呆症积极生活”研究试验的原因。
10名痴呆症患者的家庭照料者参与了定性电话访谈，他们所在的二元组拒绝参加随机对照试验，此次访谈旨在探究他们拒绝的原因。采用归纳主题分析法来确定主题。
确定了两个相关子主题的主题：（1）保护性——保护痴呆症患者、他们自己作为照料者以及他们当前的生活方式；（2）“这不适用于我们”——认为时间投入和干预可能不合适超过了参与研究的预期益处。痴呆症患者并不总是参与决策过程，照料者表示不参与的决定是以他们做所有决定的通常方式做出的。在这个小样本中，配偶照料者和子女照料者之间没有明显差异。
随机对照试验的招募可能被认为困难或不公平，因为一些参与者会错过期望的干预。然而，这项研究表明，对参与试验的时间和不便的担忧会使人们不愿参与研究。确定拒绝参与研究的可能原因有助于未来试验和招募策略的设计，以便在考虑潜在益处时兼顾所涉及的时间和精力。在痴呆症病程的适当阶段，根据痴呆症患者及其家人的需求提供研究机会，通过精心调整研究人员的沟通技巧来促进个性化招募策略，应有助于最大限度地提高招募率、减少损耗并开展更成功的试验。
