Medication-taking behaviour and treatment preferences of Indian migrants with type 2 diabetes in Australia

Abstract

In Australia, type 2 diabetes mellitus (T2DM) is a leading cause of morbidity and mortality with approximately 1.2 million people affected. Australia has a large number of migrants: as of June 2019, 7.5 million (29.7%) Australians were born overseas, and the Indian migrant population is 660,000 (2.6% of the total population). Evidence suggests that there is a very high prevalence of diabetes among Indian migrants (14.8%) compared to the Australian-born population (7.1%) along with a high rate of diabetes-related hospitalisation and complications. Indians are traditionally known for high use of ayurvedic medicines (AM), a component of complementary and alternative medicines (CAMs). Diabetes management's primary goal is to reduce symptoms, avoid the associated harms and improve quality of life. The patient can achieve these goals by adhering to treatment and lifestyle modifications. However, maintaining a normal blood sugar level can be challenging for Indian migrants because of several factors, such as an unhealthy diet, inadequate physical activity, poor adherence to medicines, religious factors, poor understanding of the health system, treatment costs, migration-related stress, seeking a job and other family-related issues. Ethno-racial and socio-cultural characteristics affect not only the susceptibility of individuals to diabetes, but also the day-to-day management of diabetes. While it is understood that Indian migrants are generally more at risk of developing diabetes than local Australians, the impact of Indian ethno-cultural traditions and religious and social norms on diabetes management is not well understood. The socio-cultural structure, traditions and ideologies of Indian migrants are complex and unique, and their impact on diabetes needs to be explored for a comprehensive understanding of, and interventions to improve, diabetes management for Indian migrants. Overall, this research aimed to gain an understanding of the factors that influence decision-making about medications and medication adherence in Indian migrants with type 2 diabetes (T2D), living in Australia. The research consisted of two stages: in-depth qualitative interviews and on-line survey using discreet choice experiments. The specific qualitative study objectives were: • To investigate Indian migrants’ awareness and understanding of, and access to, the healthcare system; how they feel it compares with their experience in India; and how they perceive this access influences their diabetes care. • To investigate Indian migrants’ medication-taking behaviour (with conventional medicines for diabetes) and factors that influence adherence at its three phases. • To explore the beliefs, decision-making process and experiences of patients with type 2 diabetes mellitus (T2DM) using AM, with a specific focus on the AM use pattern and disclosure to doctors, sources of information about AM and where AM is purchased. • To explore how Indian migrants cope with T2DM through religion and spirituality, and the impact of religion and fasting on insulin use. The specific discrete choice experiment (DCE) study objectives were: • To determine the preferences for conventional vs AM in Indian migrants with T2DM. • To identify the factors that may influence the preferences. Methods Qualitative study A qualitative study was designed consisting of face-to-face interviews. The study included Indian-born migrants (Australian citizen/permanent resident) aged 18 years or over; with T2DM; using at least one anti-diabetic medication; living in Greater Sydney or its surrounding suburbs, responsible for their own medications and fluent in English and/or Hindi. Twenty-three participants were interviewed; data saturation was reached after the 18th interview. The interview protocol was prepared after an extensive literature review, and comprised open-ended questions to enable participants to speak freely. The 40–45-minute interviews were audio recorded, transcribed verbatim and thematically analysed using a framework and an inductive approach to thematic analysis. Data analysis was performed manually using Microsoft Word. The consolidated criteria for reporting qualitative research (COREQ) was used to provide transparency in data reporting to improve the rigor, comprehensiveness and trustworthiness of the study. DCE research methods Participants completed an online survey with eight choice tasks and answered demographics questions. In the choice tasks, they chose their preferred medicine (conventional vs AM) or a 'no medicine' option. Paid and unpaid strategies were employed to recruit the participants, using Facebook and email. A D-efficient design was used to balance the attribute levels and to select a subset of the medication profiles. A total of 32 choice tasks were generated; however, to improve feasibility, the survey was blocked in 4 iterations, with each respondent completing 8 chosen tasks. Attributes and attribute-levels for the DCE were chosen systematically following a literature review and the qualitative research findings. Eight attributes (glycated haemoglobin, side effects, number of times medicine is taken (frequency), formulation, instructions to take with food, hypoglycemic events, weight change and cost of the medications) were selected. The levels chosen were widely spaced to encourage participants to maximise trade-off and increase the reliability of parameter estimates. Descriptive statistics (standard deviation, mean and frequency) for the socio-demographic characteristics of the sample and other parameters were reported. The DCE responses were analysed; a mixed multinomial logit (MMNL) model was used as it relaxes the assumption of identical distribution and accounts for heterogeneity in preferences between individuals. In DCE, parameter (β) estimates refer to the importance given by patients to an individual attribute-level, where a higher value indicates higher utility. The computer programme NLogit 6 was used for data analysis. Results Qualitative study Twenty-three participants were interviewed. The majority of participants were male (n=18) and followed Hinduism (n=17). Twelve participants had used AM at least once since they had been diagnosed with diabetes, and the remaining 11 had never used AM for diabetes (5 used AM for other conditions). Once diagnosed with T2DM, Indian migrants reported mixed emotions. Participants contemplated the need to restrict their diet, change their lifestyle and use lifelong medicines, and raised several issues related to their physical and mental health, which they felt were deteriorating. Consequently, they felt that they had to take further action to manage their diabetes: to maintain a normal blood sugar level, and to maintain well-being and inner or spiritual comfort. Controlling diabetes and associated health problems, such as co-morbid conditions and diabetes-related health issues, through the use of medications (either conventional or ayurvedic) was regarded as an important strategy. The findings show a limited knowledge of the healthcare system, and the use of informal sources (e.g., family, friends, social media) to learn about the healthcare system and the available services. Several barriers to decision-making in accessing health services were identified, such as socio-cultural beliefs, social impacts, preference for Indian healthcare professionals and the high cost of medications; these ultimately influenced diabetes management, which could lead to poor diabetes control. The study also identified some enablers encouraging people to improve their diabetes care, such as Health Cards (Medicare and NDDS card), which enable access to free GP consultations and laboratory tests and other diabetes products at a subsidised price. The findings suggest that religious beliefs influence diabetes management in this group. Participants believed that prayers gave them inner strength to manage their diabetes, and that prayers/blessings from religious leaders could help them manage their health conditions, including diabetes. Participants who held stronger religious beliefs were not in favour of using insulin or other medication derived from animal sources, and believed that fasting was an important religious obligation which could not be skipped due to diabetes. In contrast, some participants believed that animal-based medicines were permissible to consume and fasting could be skipped as it was detrimental to the health and well-being of people with diabetes. For the 12 participants that used AM, the decision-making process included evaluating AM benefits vs harms, and the positive opinions of others who used AM. Most participants expressed positive beliefs about AM (no side effects, can cure the condition and are effective), which influenced their decision to initiate AM. The decision to initiate AM was also influenced by other factors such as personals beliefs, social influence, and others’ experiences of using AM. They sought information from various sources such as family members, friends, multimedia, and from healthcare professionals in India. Participants believed that AM does not have side effects because it is obtained from a natural source (herbals), is effective and can cure diabetes. The use of AM was discontinued within months of initiation if there were no benefits. Participants used both ayurvedic and conventional medicines together as they believed that the combination of both medicines could better control blood sugar with no harmful effects. Most participants discontinued taking AM if they felt it was ineffective. Negative beliefs about AM centered on lack of scientific evidence to show effectiveness, and formulations. The majority of participants were initially prescribed oral antidiabetic medication and only two were started on insulin. From the time of diagnosis, patients made daily decisions about their diabetes disease control. The medication-taking behaviour among the participants changed at the three different phases of medication-taking (initiation, implementation, and discontinuation). Several factors influenced adherence at these three phases of adherence. At the initiation phase, most of the patients started conventional medication as soon as prescribed by GPs, while some postponed treatment initiation. The decision to initiate and continue the use of medications (adherence) was based on a balance between patient concerns and needs. The key motive was the desire to improve the diabetes outcome (control blood glucose level), and some participants were motivated to initiate treatment by advice/recommendations from GPs and the information they received about the medication. Fear of side effects delayed treatment initiation with conventional medications. Most participants reported taking their medication as prescribed. However, some reported forgetting their medication, especially when they were in a hurry for work or were out for family dinners or a party. In the implementation phase, patient benefits in (blood glucose levels) influenced people to adhere to conventional medications. Negative factors such as stigma and fear of side effects and drug dependence were identified barriers to adherence during the implementation phase. A few participants discontinued taking conventional medications once they started getting benefits and moved to AM; however, they restarted conventional medications if the desired results were not achieved with the ayurvedic medication. A few participants discontinued taking their medication due to fear of side effects. Overall, findings showed that negative beliefs and concerns about medications, such as fear of side effects, the stigma of diabetes and medications and fear of drug dependence, are common factors that influenced the initiation of medication. Decision to initiate the process was influenced by the balance between the desire to improve blood sugar levels and Hba1c outcomes (necessity beliefs) and negative medication beliefs (concerns). If the benefits were greater than the concerns, participants were more likely to initiate medications (either conventional or ayurvedic). DCE research The survey was completed by 141 participants. The average age was 49.7 years; most were male (n=92, 65.2%). The majority followed Hinduism (n=75, 53.2%). Many (n=80, 56.7%) respondents had co-morbid conditions, mainly cardiovascular disease. The majority (n=114, 80%) of participants used prescribed oral conventional medicine and 31.2% (n=44) used AM alone or with conventional medicines for their diabetes. Overall, the preference of respondents to initiate a medicine was negative for both medicines (conventional (β=−2.33164, p<0.001) and AM (β=−3.12181, p<0.001)); however, significant heterogenicity was noted in participants’ preferences (SD: 2.33122, p<0.001). Six attributes were identified to be a significant influence on medicine preferences: occurrence of hypoglycaemic events (relative importance, RI= 24.33%) was the most important, followed by weight change (RI=20.00%), effectiveness of the medicine (RI= 17.91%), instructions to take with food (RI= 17.05%), medicine side effects (RI=13.20%) and medicine formulation (RI= 7.49%). Another important finding was that participants expressed a desire to initiate a medicine despite the medicine having side effects, with the preference for initiation being higher with mild side effects compared with moderate to severe side effects. Conclusions This is the first qualitative study of Indian migrants with T2DM to explore their understanding of the Australian healthcare system; their medication-taking behaviour; and the impact of religious, cultural and other factors on diabetes management. The qualitative study revealed that Indian migrants had limited knowledge about the Australian healthcare system and relied on informal sources for information. Sociocultural beliefs, social influences, preferences for healthcare professionals, and high cost of medicine were barriers to accessing healthcare, while healthcare cards (Medicare and NDSS) were the main enablers. Religious beliefs play an important role in the self-management of diabetes among Indian migrants living in Australia. However, both positive and negative beliefs were identified regarding praying, using animal-based medicines, and the impact of fasting on the management of diabetes. Participants had a limited understanding of the rulings and teachings of their religion within the context of diabetes. Overall, Indian migrants usually use AM alone or with conventional medicine for diabetes self-management. Most took conventional medicines, though there were delays in initiation of the prescribed medicines. Side effects was a significant factor influencing medication adherence at all phases, whilst motivation to manage diabetes effectively was the key facilitator of medication taking. The quantitative findings demonstrated negative preferences for both conventional and ayurvedic medications; that is, Indian migrants were more likely to not start either conventional or ayurvedic medication to manage diabetes. Overall, if choosing between medications, they were more likely not to take ayurvedic medication compared to conventional medication. Preferences for conventional and ayurvedic medication were heterogenous and influenced by several factors. Experiencing hypoglycemic events was the most influential factor, followed by weight change, glycated haemoglobin, instructions for taking with food, side effects and formulation of medications. However, Indian migrants with T2DM indicated willingness to initiate medication to gain benefits despite mild and moderate side effects. This research has highlighted the importance of AM as a treatment option for T2D in Indian migrants living in Australia, and the range of factors influencing medication taking. The study findings point to the importance of healthcare professionals, particularly prescribers, to consider the range of factors that can impact medication taking when monitoring adherence, from initiation to persistence and discontinuation of therapy