Reluctance of patients with chronic obstructive pulmonary disease in its early stages and their families to participate in a partnership-based self-management trial: A search for explanation.

Abstract

Recruitment, the process of accessing, screening, selecting and retaining participants for research remains a challenge. In a randomized controlled trial, partnership-based self-management intervention for patients who have chronic obstructive pulmonary disease (COPD) in its initial stages, and their families, a theoretical framework developed for patients with an advanced COPD and their families was modified and implemented in a primary care context. In contrast to recruitment to the original study where 4% decline participation, in this study 25% of the potential patients declined participation. Although participants were encouraged to bring a family member, only 25% of them did so. The main reason for not being accompanied by a family member was that patients did not want anybody accompany them. Those who had quit smoking were more often accompanied by a family member compared to those who smoked. Reviewing the literature, the most compelling explanations for non-participation are shame and self-blame due to smoking, and that potential participants may not have envisioned any benefits from participating since they might not have realized that they had COPD. An alternative recruitment process needs to embrace the situation that potential participants find themselves in and which takes account of the issues at stake.