Palliative care integration for patients with advanced chronic obstructive pulmonary disease (COPD): Identifying essential components using participatory action research

Abstract

Background: Chronic obstructive pulmonary disease (COPD) is a life-limiting condition with palliative care needs. Despite increasing awareness about the role palliative care can play in care provision for patients with advanced COPD, integration in standard care remains underdeveloped. The unpredictability of the disease progression and misconceptions about palliative care being equivalent to end-of-life care often prevent a timely integrated approach in advanced COPD. Aim: To identify practices designed to increase integration of palliative care in the management of patients with advanced COPD in a respiratory service in Southern Switzerland. Design: A participatory action research approach was chosen and key stakeholders were involved to develop new knowledge and practices, supported by a Theory of Change framework. Data from each cycle and retrospective analysis at the end of the whole research were analysed using thematic analysis. Setting/participants: Five action research cycles with seven healthcare professionals working in palliative or respiratory care settings were conducted. Results: Three elements of integrated palliative care in advanced COPD were identified: multidimensional assessment, healthcare professionals’ education and interdisciplinary team meetings, which are the pillars of a new integrated palliative care model for patients with advanced COPD. Conclusions: The new integrated palliative care model in advanced COPD includes essential elements with a focus on patients, healthcare professionals and care delivery. Further research on testing this model in clinical practice, service development, implementation processes and possible outcomes, including evaluation of the financial impact of integrated palliative care is necessary to foster this care approach across all possible settings.

Essential Elements of Home-based Palliative Care Model: A Rapid Review

“…[ 23 ] No dimension can be treated in isolation. [ 24 ] Physical pain is managed by giving pain-relieving drugs such as opioids or physical therapy, which could be further hindered by the lack or unavailability of opioids in the health centers. [ 25 ] According to the Narcotic and Psychotropic Substances Act of 1985, opioid availability is very much restricted to prevent its misuse.…”

Supporting best practice in reflexive thematic analysis reporting in Palliative Medicine: A review of published research and introduction to the Reflexive Thematic Analysis Reporting Guidelines (RTARG)

“…13 There was very little discussion of researcher reflexivity in the articles reviewed, other than brief mentions of the professional positioning of the researchers and/or keeping a reflexive diary in a few articles. As a notable exception, Fusi-Schmidhauser et al 18 included nice reflections on navigating the power dynamics in their participatory action research:practising action research within a practitioner’s group with hierarchical relationships is challenging. The risk of developing asymmetrical relationships and thus preventing a truthful capture of all opinions and voices needs to be constantly assessed.…”

“…13 There was very little discussion of researcher reflexivity in the articles reviewed, other than brief mentions of the professional positioning of the researchers and/or keeping a reflexive diary in a few articles. As a notable exception, Fusi-Schmidhauser et al 18 included nice reflections on navigating the power dynamics in their participatory action research:…”