There are currently 179,390 refugees and asylum-seekers registered with UNHCR in Malaysia, nearly double that of 2010 [41, 46]. With various countries of origin such as Pakistan, Sri Lanka, Yemen, Somalia, Syria, and Afghanistan, the majority of displaced (~ 85%) persons residing in Malaysia originally come from Myanmar (UNHCR . The Rohingya population has recently become the largest proportion of those registered with UNHCR given the latest conflict arising in Rakhine State, Myanmar (Fig. 1) (UNHCR . In terms of an age distribution, approximately one quarter of those registered are children under the age of 18—a slight underrepresentation compared to the global figures (UNHCR .
In the Malaysian context, UNHCR is the dominant body safeguarding refugee and asylum-seeker wellbeing (UNHCR Malaysia ), as Malaysia is not among the 145 States that have signed and ratified the 1951 Refugee Convention . Therefore, Malaysia has no internationally grounded legal framework in place to protect, regulate, or monitor refugees and asylum-seekers that reside within the borders . Failure to be party to the Convention has resulted in no formal distinction made between refugees/asylum-seekers and undocumented migrants—all of whom the government considers are illegally residing . Indeed, illegal or irregular status, further exposes these vulnerable populations to exploitation, insecurity and uncertainty,they must find informal ways to work, gain education, and access health services, among many other daily challenges [28, 38, 39].
In Malaysia, HIV is a widespread public health concern and [2, 17, 50] POC are not only vulnerable to contracting HIV due to their precarious circumstances in the wake of conflict , but face challenges in obtaining and maintaining care. Malaysia is among the many countries with results-based evidence of Highly Active Anti-Retroviral Therapy (HAART) medication regimens significantly reducing HIV related mortality/morbidity, and increasing life expectancy; however, adherence to these regimens is an important part of their efficacy [16, 20]. While registered HIV positive POC under the protection of UNHCR Malaysia (Fig. 2) are entitled to life-saving HIV related healthcare services, Chesney  argues that the difficulties of adhering to daily medication regimens are only made worse by the precarious nature of living as a refugee/asylum-seeker in Malaysia. Only 62% of UNHCR Malaysia’s HIV positive POC population were on ART and 82% of those who were on ART adhered to medication (Fig. 3) (UNHCR .
Semi-structured, in-depth individual interviews were carried out with HIV positive POCs to gather their perspectives on barriers and facilitators of HIV medication adherence in the setting of Kuala Lumpur, Malaysia . A guiding interview protocol was designed based on the socio-ecological model (SEM) (Fig. 4), which recognises the impact of social and structural determinants on behaviour and health . The five nested, hierarchical levels of the SEM—individual, interpersonal, community, organizational and public policy—cover multifaceted and interrelated layers that can affect HIV medical adherence. This study pays particular attention to the lower four layers,the public policy level is covered in a separate paper .
Key interview topics were covered using an interview guide (“Appendix 3”) which combined the use of open-ended and probing questions to gather relevant information and focus participant responses. Interview topics included refugee/asylum-seeker diagnosis experience, experiences of HAART, challenges faced when trying to adhere to medication, perceived facilitators of HAART medication adherence, and potential solutions to improve future adherence. Participants were also asked a series of questions relating to their refugee/asylum seeker status and socio-demographic characteristics. Finally, perspectives on stakeholder (UNHCR, government, NGO’s, pharmacies) interventions to help decrease barriers and increase adherence were explored. Interviewees were asked to consider how factors on all levels (individual, interpersonal, organizational, community, public policy) impacted adherence . This approach was adopted to encourage a more wholistic understanding of HIV medication adherence.
Participant recruitment and consent
As we wished to learn more about the experiences that impacted adherence to medication among HIV positive POCs, we recruited participants from POCs registered with UNHCR Malaysia using the following eligibility criteria: (1) registered and recognized as a refugee or asylum-seeker with UNHCR Malaysia; (2) diagnosed as HIV positive; (3) reside in Selangor or Kuala Lumpur; (4) contactable via phone number; (5) taking medication for minimum 6 months. Participation was restricted to Selangor or Kuala Lumpur (Fig. 5) and to POC who were contactable via telephone for logistical reasons. Eligibility criterion number 5, taking medication for minimum 6 months, was chosen so that POCs would have at least 6 months of experience accessing medication and HIV-related healthcare services. Past UNHCR Malaysia data showed that 6 months was the average time for people to settle on a medication that worked in terms of side effects, finances, and transportation to pharmacies (UNHCR .
Of the 276 POC with HIV registered with the UNHCR in Malaysia, 205 reside in Klang Valley. Of those in the area, 142 individuals were on ART and shortlisted for participation (Fig. 6). The first author and one of three research assistants called each potential participant with the help of an interpreter and, following a participant information sheet (“Appendix 2”), explained the study in full. Specifically, the interpreter translated the author’s words into a language the POC could understand and then again translated the POC’s words back into English for the author to understand. Potential participants were assured that their decision to participate would have no effect on their processing or resettlement status at UNHCR. Interpreters read the full consent form in this initial phone call and explained that participants would either sign the form or, if unable to write, give verbal consent preceding interviews. Consent forms outlined the confidentiality and anonymity on behalf of UNHCR and all researchers involved, as well as the participant’s rights, and contact information that could be used if any questions and/or concerns arose. Consent for audio recording was included in the form as an additional yes/no question. All participants had to give consent before being interviewed. Furthermore, children below 18 that were included in the study had a parent or guardian consent and speak on their behalf. Consent explanations, signing and interviews all took place with children present; however, during interviews, parents alone participated.
All participants were given a RM30 ~ CAD $10 transportation allowance and a small food bag filled with non-perishable items. Preceding the interviews, participants were not made aware that they were receiving any incentives in an attempt to maintain the voluntary nature of participation. REB approval was obtained by Simon Fraser University (REB Number 20190452).
POCs tend to change contact details frequently given their use of prepaid phone cards. Therefore, only 55 POCs were reachable at the time, resulting in 34 individuals interviewed. The discrepancy between those we attempted to contact and those interviewed can be attributed to incorrect/non-updated phone numbers (15), inability to take time off work (4), and health concerns (2) that interfered with participation.
Semi-structured, individual, in-depth interviews were conducted with registered POCs living with HIV from June to July 2019 by the research team—first author or one of three research assistants (two females and one male). The interviews took place in private interview rooms within the UNHCR complex to ensure privacy, familiarity and convenience for participants involved. Thirty-two interviews were completed in person. Two were conducted over the phone as this was more convenient for the participant.
In the interview room there was one interviewer and one interviewee. When needed, one interpreter was utilised in each interview to translate the words of the interviewer and interviewee; they were strictly there to facilitate translation. Interpreters were employed and trained by UNHCR. Each interpreter spoke fluent English as well as their mother tongue– Burmese, Tedim, Rohingya, or Arabic. In an attempt to standardise protocol, interpreters were briefed before each interview, including the circumstances of the POC about to be interviewed, as well as key medical words to ensure they knew how to appropriately translate. Twenty-nine out of the 34 interviews required the assistance of an interpreter.
On average, the interviews lasted 50 min (ranging from 24 to 91 min). Observer details were captured through interviewer journaling directly following the interview. Details included information about the setting of the interview, the time of the interview, observations regarding the interviewee (notes to give insight to body language, and facial expressions), and additional issues or questions that needed to be highlighted to come back to when undertaking the analysis. All interviews were audio-recorded with interviewee consent.
Following common practices in qualitative research that emphasize the iterative nature of grounded research, data collection and preliminary analysis occurred simultaneously . This allowed the research team to identify new and important perspectives that might have surfaced during interviews and could be used to improve the interview guide. Additionally, the large number of POCs living with HIV in precarious circumstances warranted the need for immediate debriefs. We expected a certain number of POCs to bring up problems that could be fixed with simple but prompt interventions (e.g. communicating with hospitals/pharmacies to secure a single medication pick up time to avoid numerous trips for varying medications). Initially the research team, including first author and all three research assistants, gathered after four interviews for an audio-recorded debrief session in order to identify any striking themes in the data that related to the research focus. Indeed, general themes were identified about linkages between barriers/facilitators and adherence to HIV medication. During subsequent debrief sessions, new data from audio-recordings were compared to existing themes to either strengthen, dispute, or expand upon them.
As interviews were audio recorded according to consent of participants, recordings were transcribed post-interview. The first, second and third authors divided transcriptions (15, 15, and 4 respectively) to read through, double check against original recordings and interviewer notes to ensure accuracy, and further highlight themes within the lower 4 nested levels of the SEM in relation to the primary focus. Through extensive discussion, themes were cross-referenced with other transcription highlights and with key ideas from audio-recording debrief sessions. Through this process, differences were resolved, and common themes emerged. Throughout the highlighting and audio-recording analyses, the individual and interpersonal levels of the SEM were kept in mind to ensure a comprehensive, contextualised understanding of emerging themes.