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Background: In Malaysia, palliative services are almost non-existent for those with severe organ failure such as chronic obstructive pulmonary disease (COPD). Many health care providers (HCPs) and policy makers lack awareness of the need for such services. Aim: To explore the views and experiences of HCPs and policy makers regarding the services that provide supportive care for patients with severe, life-limiting COPD. Method: We interviewed HCPs and policy makers working in respiratory medicine, palliative care and primary care medicine in Klang Valley, Malaysia. Interviews were guided by a topic guide, audio-recorded and transcribed verbatim. Thematic analysis was carried out. Results: We conducted 11 in-depth interviews with respiratory care (n=4), palliative care (n=4) and primary care physicians (n=3). Data saturation was achieved by the 9th interview. Four main themes emerged. Firstly, these patients were suffering greatly but the suffering was mostly hidden. Secondly, there was a critical unmet need for care ranging from basic needs to palliative and end of life care. Thirdly, coordinated, holistic and accessible care was lacking and there was limited or no resources for this within the system. Finally, cultural issues such as religious norms and power hierarchies impacted on patient care and acceptance. Conclusion: The Malaysian health care system is responding poorly to the needs of patients with severe, life-limiting COPD. A complete examination and overhaul of the system is required, starting with awareness of this hidden neglected population. This study was sponsored by the NIHR RESPIRE Global Health Research Unit and is written on behalf of the RESPIRE collaboration.

Background: Qualitative interviews allow participants to articulate their views and experiences in their own words. [Taylor M. 2005] We are seeking to understand end-of-life considerations in COPD patients in Malaysia. This necessitates interviewing patients in GOLD stage 4, many of whom have intractable breathlessness. Aim: To explore the process of interviewing breathless patients. Method: Our qualitative study uses audio-recorded semi-structured interviews, which are transcribed. Data is analysed thematically. Interviewer field notes record observations of the interview process and challenges of data collection. Results: The following themes emerged: (1) participant disability; (2) environmental noise; (3) participant isolation and (4) interview technique. Participants’ symptoms require balancing of the longer time needed to converse and their inability to speak for long. This may require the use of short multiple interviews and additional input from carers. Ventilation machines such as oxygen concentrators and fans add to environmental noise making it difficult to hear and record voices. Participants’ disabilities require interviews to be conducted at their homes. The social isolation does not allow for ‘recruitment by snowballing’. The interviewer also observed changes in interview techniques towards using close-ended questions and the need for patience to allow participant time to answer. Conclusion: There are multiple challenges in interviewing breathless COPD participants, which may be addressed with prior preparation and proper handling of time. This study was sponsored by the NIHR RESPIRE Global Health Research Unit and is written on behalf of the RESPIRE collaboration.