National University of Ireland, Ireland.
J Health Psychol. 2023 Mar;28(4):374-387. doi: 10.1177/13591053211037736. Epub 2021 Aug 6.
The current study-within-a-trial explored individuals' decisions to decline participation in research trialling a chronic illness-focused therapy (i.e. multiple sclerosis). Four themes were identified from seven semi-structured interviews with participation decliners and were confirmed by the host trial's Patient & Public Involvement (PPI) panel: acknowledgement of the value of research; 'fit' of the study; misinterpretation of participant information; and 'ignorance is bliss' - discussed in light of theory and research. This study-within-a-trial extends research on trial recruitment and participation decline; while also suggesting that PPI can be utilised in both a practical and impactful manner.
本研究在一项临床试验中,探讨了个人拒绝参与慢性疾病治疗研究的决定(例如多发性硬化症)。通过对 7 名参与拒绝者的半结构化访谈,识别出了 4 个主题,并得到了主题试验的患者和公众参与(PPI)小组的确认:承认研究的价值;研究的“适合性”;对参与者信息的误解;以及“无知是福”——从理论和研究的角度进行了讨论。本研究在一项临床试验中扩展了试验招募和参与拒绝的研究;同时也表明,PPI 可以以实际和有影响力的方式得到利用。