Insights into how Malaysian adults with limited health literacy self‐manage and live with asthma: A Photovoice qualitative study

Abstract

Background: Adjusting to life with a chronic condition is challenging, especially for people with limited health literacy, which is associated with low compliance with self-management activities and poor clinical outcomes.Objective: We explored how people with limited health literacy understand asthma and undertake self-management practices.Design: We adapted the arts-based qualitative methodology Photovoice. Setting and Participants:We sampled ethnically diverse adults with asthma and limited health literacy from four primary healthcare clinics in Malaysia. After a semistructured in-depth interview, a subset of participants took part in the Photovoice component in which participants undertook a 2-week photo-taking activity and subsequent photo-interview. Interviews, conducted in participants' preferred language, were audio-recorded, transcribed verbatim, translated and analysed thematically. We used the Sorensen's framework (Domains: access, understand, appraise, apply) to describe participants' experience of living with asthma, what they understood about asthma and how they decided on self-management practices.Results: Twenty-six participants provided interviews; eight completed the Photovoice activities. Participants with limited health literacy used various sources to access information about asthma and self-management. Doctor-patient communication had a pivotal role in helping patients understand asthma. The lack of appraisal skills was significant and experiential knowledge influenced how they applied information. Self-management decisions were influenced by sociocultural norms/ practices, stigmatizing experiences, and available social support.

eHealth literacy of patients attending a primary care clinic in Malaysia and its associated factors: A cross-sectional study

“…39 Lacking of online health information written in the local languages, for example, Malay language in Malaysia, affects people's access and understanding of health information in LMICs. 40 In our study, participants were able to search for but were not confident in appraising online health information. These findings were similar to other eHealth literacy surveys, particularly among patients living with chronic obstructive pulmonary disease and patients with cardiovascular risks.…”

“… 39 Lacking of online health information written in the local languages, for example, Malay language in Malaysia, affects people‘s access and understanding of health information in LMICs. 40 …”

Social dimensions of chronic respiratory disease: stigma, isolation, and loneliness

“…people living with chronic respiratory disease and those supporting them) and services are needed while societal stigma continues. People with asthma have described how support groups can be important in helping reduce feelings of shame, and supporting acceptance of their condition [26], while people with posttuberculosis lung disease have suggested that services like pulmonary rehabilitation should include psychological support to help address these challenges [24 ▪ ]. Adjusting language used to describe conditions may be helpful: participants with asthma in a recent intervention development study felt a new approach using nonmedical language, re-framing asthma as involving a healthy mechanism being triggered too easily (rather than a deficiency or weakness), could reduce stigma and self-blame, potentially increasing motivation to adhere to treatments [33 ▪ ].…”

“…Adjusting language used to describe conditions may be helpful: participants with asthma in a recent intervention development study felt a new approach using nonmedical language, re-framing asthma as involving a healthy mechanism being triggered too easily (rather than a deficiency or weakness), could reduce stigma and self-blame, potentially increasing motivation to adhere to treatments [33 ▪ ]. In all cases, interventional approaches to address stigma will likely require multilevel input [26], co-developed with the people the intervention will involve and impact (e.g. people with chronic lung disease, professionals and local communities) to be practically and culturally acceptable [19].…”

Feasibility of supported self-management with a pictorial action plan to improve asthma control

“…A previous study on delivering supported self-management in the context of Malaysian primary care highlighted that the written action plan endorsed by the Malaysian Thoracic Society 10 was not understood by patients possibly because of limited health literacy combined with the language challenges of living in a multilingual society 23 . We have explored this issue in some detail 24 and found that a written action plan is a particularly an important barrier in Malaysia, hence, the need to explore the role of a pictorial action plan in asthma-supported self-management.…”