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.

<p>Frustrated Caring: Family Members’ Experience of Motivating COPD Patients Towards Self-Management</p>

“…The patient's will in this matter must be explored, and if the patient does not want a principal family member involvement, that must be respected; this is, however, an ethical issue that must be studied further as mentioned elsewhere. 13 The results agree with others that families of COPD patients are often in a constant state of alertness and stress, with their social life modified, striving to maintain normalcy, while experiencing ambivalence in the relationship as their role changes from being a spouse or son/daughter into becoming a caregiver, but still willing to be involved. 10,24 Facilitating families' and patients' understanding that COPD may in the future severely impair the patient's self-management, is important.…”

“…1,2 Insufficient support from health professionals (HPs) has been observed, [3][4][5][6][7][8][9] and families may experience a burden similar to suffering from chronic illness themselves. 8 Researchers call for a comprehensive focus on caregivers' role in motivating COPD patients towards selfmanagement 1,2,[10][11][12][13][14] where the goal to optimize patients' health, reduce symptoms and increase function, involves the establishment of alliances with HPs, family, friends and community. 15 Early intervention and family involvement by HPs may reduce the burden and distress of the patient-caregiver dyad, and enhance their chance of developing practical skills, strategies for managing adverse events and anticipation of future events.…”

“…4,10,16 Looseness in current collaboration between some families and HPs indicates a need for more individualized practices regarding family involvement in patients' support, symptom management and discussions concerning the patients' therapy. 4,13 Families may prioritize the patients' needs while compromising their own health, a fact that receives little attention from HPs and social services. 18 High levels of loneliness, stress and depression experienced by COPD patients and their families may be considerably mitigated by increased social support.…”

Ethical Dilemmas in Physicians’ Consultations with COPD Patients

“…A difference has been found regarding the preconditions of enrolment in PR, as some facilities require patients' smoking abstinence and other do not. 52 Furthermore, how physicians would be more actively motivated to refer smoking patients to PR, was also questioned by other researchers. 15 Both these questions are worth further investigation.…”

Recruitment in online research for COPD: leveraging social media and research registries

“…Participatory social media and electronic research registries pose opportunities for stakeholders to readily access this patient population [2–4]. Despite increased access, patients with COPD continue to report limited willingness to participate in online disease-specific programmes and studies [5]. Recruitment is a science; it is a systematic and strategic process that is dependent on the values and needs of an intended audience.…”