Understanding the reasons for non participation in self-manegement intervemtions amongst aptienrs with chronic conditions: addressing and increasing opportunities for patients with advanced chronic obstructive pulmonary disease to access self-management

Abstract

Background In chronic obstructive pulmonary disease (COPD), understanding the problem of poor patient participation in evidence-based self-management (SM) and pulmonary rehabilitation (PR) programmes (together referred to as SM support programmes) is critical. This thesis aimed to improve understanding of poor patient participation and retention in these programmes; how participation might be improved; and how might patients be better supported with their SM. Methods Using the Medical Research Council guidance on complex interventions this thesis (1) quantified the ‘actual’ patient participation and completion rates; (2) explained, using theory, the factors that influenced participation in studies of SM support including the programmes among chronic disease and COPD patients; and (3) explored patient and expert stakeholders’ perspectives on the reasons for non-participation in SM support programmes, how participation might be improved, how might patients be supported with their SM. Results (1) Among 56 studies, high study participation rates and completion rates were seen however, the incomplete reporting of participant flow confused the problem of participation. (2) Among 31 studies, participation among patients with chronic disease including COPD was shown to be influenced by their ‘attitude’ and ‘perceived social influence/subjective norms’; ‘illness’ and ‘intervention perceptions’. (3) From 38 interviewees, besides patients’ beliefs, non-participation was also influenced by resignation and denial of the illness; health systems; and programme organisational factors. Professionals building relationships and supporting patients with their SM alongside programme organisational improvements might encourage patient participation in SM and the programmes. Conclusions Patient participation is a complex behaviour, besides socio-behavioural factors, participation behaviour can by influenced by a mix of several health system and programme organisational factors. Changing the behaviour of health professionals and indeed the wider health system, towards normalising a patient partnership approach, with implementation of SM support in routine care might help more patients to consider participation in their care and improve patient participation in COPD SM support programmes.