Sick role: negotiating identity and its impact on asthma control and self-management practices in people with asthma and limited health literacy in Malaysia.

Aim: A traditional sick role may require a person with the illness to assume the ‘sick role’ and take responsibility for seeking help in order to get better. People with asthma have to adjust to a chronic condition rather than striving to overcome a temporary illness which is particularly challenging for people with limited understanding about their health. Using the arts-based methodology, we aimed to explore the views and experiences of people with asthma and limited health literacy on managing their condition.Methods: We purposively sampled adults ³18 years, with asthma and limited health literacy (using health literacy scale, HLS-Q47 (Malay version)) from five primary healthcare clinics in Malaysia. The interviews used a semi-structured topic guide in participants preferred language. Participants were additionally invited to participate in ‘Photovoice’: (1) One-week photo-taking (2) Post-photo interview. Interviews were audio-recorded, transcribed verbatim, and analysed thematically. Results: Twenty-six participants provided in-depth interviews. Eight of these participants completed photovoice activities which provided additional insights. The understanding of asthma and its treatment has a significant impact on how a person accepts and negotiates their identity as a person with asthma (including the adoption of asthma action plans). Non-acceptance to asthma diagnosis which is profound in people who were subjected to stigmatising experiences (i.e. shaming on use of inhaler in public), affects asthma control. The role of social support (i.e. having family with asthma or support from friends) shaped a more positive understanding and experience about asthma. Conclusion: Helping patients with asthma to understand their illness better is crucial to improving adoption of asthma self-management practices and asthma control. Improving communication skills among primary care practitioners can help people with limited health literacy understand asthma. Promoting awareness of asthma within the health system and the wider community context will improve the level of social support and potentially lessen stigmatising experiences. Implementation Science/Service Development Research Ideas on Respiratory Conditions and Tobacco Dependency Abstract Declaration of Interest HS is a PhD student with the UK NIHR Global Health Research Unit on Respiratory Health (RESPIRE), using UK Aid from the UK Government to support global health research.The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Department of Health and Social Care References and Clinical Trial Registry Information