Introduction

Drug use disorders (DUD) have become a major public health concern, increasing morbidity and premature mortality, and the burden of DUD has tremendous negative consequences for persons using drugs, their caregivers and families, as well as the society [1]. DUD are mental and behavioural disorders caused by the use of psychoactive and dependence-producing drugs [2, 3]. Almost 13 percent of adults worldwide who used drugs in the previous year, that is about 0.7 percent of the global adult population (aged 15 to 64), suffered from DUD in 2017 [4]. The global burden of disease attributable to drug use and drug use disorders was estimated to be 31.8 million and 20.4 million disability-adjusted life years in 2016, respectively [5]. Not captured by these health loss estimates are related economic and social consequences, which are substantial. In the United States, the impact of opioid use disorder and fatal opioid overdose in terms of healthcare, substance abuse treatment, criminal justice, lost productivity, reduced quality of life and premature mortality costs, for example, was estimated to be about 1.02 trillion US dollars in 2017 [6].

For most individuals with DUD, the family is the predominant source of support and the primary caregiving role is often assumed by a family member [7–9]. The impact felt by caregivers as a result of caregiving, the caregiver burden, is a multidimensional concept comprising social, economic, physical and emotional issues [10, 11]. In the literature, a distinction is made between objective and subjective burden [12, 13]. While the former captures how caregiving disrupts a caregiver’s life (that is, the socioeconomic burden comprising for example economic loss, social limitation, family conflict), the latter refers to the psychological burden. From a psychological perspective, the stress process associated with caregiving can be separated into four domains, namely the background and context of stress, primary and secondary stressors, mediators of stress such as coping and social support, as well as outcomes of stress [14]. Primary stressors are stressors that arise from the need of the patient, overload and relational deprivation, while secondary stressors comprise role strains (for example, economic problems, social limitations, family conflict) and intrapsychic strains (for example, loss of self-esteem and mastery) [14]. Ethnicity and cultural values also influence the stress process, especially through their effect on mediator variables [15–17]. Caregivers’ appraisal of caregiving stressors may result in negative or positive experiences of caregiving and affect their physical and psychological health [18, 19]. Studies that focus on the burden of caring for family members with mental illnesses such as bipolar and affective disorders, depression and schizophrenia, as well as the determinants thereof, have consistently shown that caregiving generates a burden, with severe negative effects on caregivers’ well-being across various dimensions [20–30]. The presence of caregiver burden was also confirmed in studies that specifically focus on DUD or co-occurring substance and mental disorders [7, 31]. In fact, the caregiver burden from caring for adolescents in treatment for substance use disorders and adolescents with mental health problems was found to be similar [32].

To mediate the effects of caregiving, active coping (i.e. seeking to confront and reduce stressors) such as performing religious activities, accepting the patient’s condition, planning for the future, responding positively to the current situation and avoidant coping (i.e. seeking to circumvent stressors) such as giving up caring are commonly used by caregivers of persons with DUD and severe mental disorders [28–31, 33, 34]. Stigma, lack of support, and lack of coping resources more generally, are identified in the literature as major barriers to coping [31, 35, 36].

The literature on substance users and DUD in South and Southeast Asia is scarce [35, 37, 38] and the evidence for Myanmar is limited to one policy briefing paper, which discusses the effects of the country’s harsh drug law enforcement practices on substance using persons and their families and argues that these increase stigma [39]. Myanmar is the second largest producer of opium and one of the largest producers of methamphetamines worldwide [4, 40, 41]. Due to the criminalisation of drug use, official statistics on drug users in Myanmar are not available, but drug problems are believed to be widespread [39]. In 2018, the 1993 Narcotic Drugs and Psychotropic Substances Law was amended and the country’s first National Drug Control Policy was released [42]. While the National Drug Control Policy, which was developed with support from the United Nations Office on Drugs and Crime (UNODC), focuses on public health and suggests decriminalizing drug use, the amended 1993 Narcotic Drugs and Psychotropic Substances Law, however, continues to impose harsh prison penalties on substance users [43].

Given that the National Drug Control Policy was only announced in 2018 and is not yet supported by an adequate legal framework, DUD in Myanmar is still a very sensitive issue. Hence, there are no studies that focus on DUD and the burden endured by caregivers of persons with DUD. This study, therefore, aimed at analysing the socioeconomic and psychological burden of caregivers. It also explored the coping mechanism used by caregivers to tackle the problems they encountered when caring for people with DUD, as well as barriers to coping.

Materials and methods

This study employs a qualitative research design, using data collected through in-depth interviews.

Results

Sociodemographic characteristics of the thirty caregivers are summarized in Table 1. More than four-fifths of respondents were from Yangon and more than half were female and aged 45 years and above. Almost two thirds of caregivers were the parent of a family member with substance use disorder and had their own business. According to the respondents, the majority of substance using persons were young, male, single and unemployed. Regarding the type of illicit drugs used by the family member, amphetamine was mentioned most often, followed by heroin and cannabis. Most of the care recipients were reported to also consume other types of psychoactive substances such as tobacco, alcohol and betel, while some had co-occurring use of heroin or cannabis and amphetamine.

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Table 1. Socio demographic characteristics of caregivers and their family members.

https://doi.org/10.1371/journal.pone.0258183.t001

Discussion

DUD impose a burden on substance using persons, their family members, and family caregivers [7, 31, 35, 38]. Yet, evidence is limited, especially for Southeast Asian countries. This study focused on Myanmar, a country where drug use has been criminalized, and analysed qualitative data from thirty informal caregivers of persons with DUD, who were treated at the YMHH, one of Myanmar’s two tertiary-level mental health hospitals, to better understand the burden they are facing, coping strategies used and barriers to coping.

Caregivers highlighted the importance of background as well as context and argued that it is important to understand the factors underlying substance use. These included peer pressure, family problems and easy access to drugs in the neighbourhoods despite the country’s harsh drug law. Peer pressure was also identified as a key risk factor in Sibeko, et al. [52] and a source of worry as caregivers were concerned about the continued influence of peers on their family member’s behaviour. Most caregivers further explained that they went to the YMHH, because of their family member’s desire to withdraw from drugs which is in line with recovery-oriented approaches. Evidence, however, suggests that persons with DUD often do not seek speciality care on their own [53]. These new themes, drug use risk factors and reason for seeking treatment, while not in line with the study’s primary objective, may have been driven by caregivers’ desire to garner some social approval, given the high level of stigma persons with DUD and their families experienced.

Since 1993, when cost-sharing was introduced, out-of-pocket health expenditures have been the main source of finance in Myanmar, accounting for 79 percent of total health expenditure in 2011 [54]. Only 0.3 percent of total health expenditure are used for mental health [55, 56] and out-of-pocket expenditures on treatment of DUD are high. The mental health treatment gap is estimated to be almost 90 percent due to factors such as stigma and insufficient knowledge about mental disorders, despite the fact that community mental health care has been developed since 1990 [54]. Therefore, the bulk of the financial and non-financial burden related to DUD is typically borne by the substance using person and their family members, which is echoed by the findings in this study. All respondents were financially affected as they had to pay for direct medical and non-medical expenses such as bed charges, and expenses for food and transportation. Transportation cost were not only high for caregivers living outside of Yangon, but also for caregivers residing in the country’s largest city since the hospital is located far away from the city centre. Iseselo, Kajula, & Yahya-Malima [30] also found that most caregivers lived far away from the hospital and faced transportation challenges, which prevented some from going to the hospital. Moreover, caregivers living outside of Yangon had to bear additional accommodation expenses. Other expenses included legal fees, payments to police officers and expenses for religious rituals. In addition, caregiving was found to result in substantial indirect cost. Prior research also found that caregivers faced income losses as they either had to cut back working hours or were unable to work due to the responsibilities associated with caregiving [20, 30].

Moreover, taking care of persons with mental disorders limits social interactions and can result in social isolation and withdrawal [28, 30]. Consistent with the literature, some caregivers felt socially isolated due to their caregiving responsibilities, which prevented them from participating in social activities. Moreover, caregiving and harmful behaviour of persons with DUD such as stealing and physically or verbally abusing family members were found to negatively affect family relationships. Usher, et al. [31] also found that stealing from family members was a common problem of substance use.

As expected, caring for a person with DUD was found to negatively affect respondents emotionally. Most caregivers expressed sadness about seeing a loved one ill and their hope for the family member’s future shattered. This linkage between caregiver’s grief and a family member’s mental health problems was found in several studies [26–28, 31, 35]. Feelings of grief, hopelessness and guilt were particularly pronounced among parents, who were taking care of a child with DUD. Moreover, feelings of guilt were stronger in case of poor caregivers as they thought that they could neither support their family member well enough financially nor devote sufficient time to provide care, given that they have to work to survive. Feelings of guilt related to caregiving were also discussed in prior work [25–27, 31]. Behavioural problems of persons with DUD triggered feelings of sadness and anger in caregivers, which supports that behavioural problems of patients are predictors of negative emotions in caregivers [7, 32].

To deal with these challenges, most of the respondents adopted active coping strategies such as performing religious activities, accepting their situation and planning ahead, which is consistent with studies that analysed the coping mechanisms of caregivers of persons with schizophrenia and breast cancer [50, 57]. Furthermore, some of the caregivers would like their family member to use religious coping strategies after being discharged from the hospital and to spend time in a monastery. This is similar to the findings of a study in Ghana, where caregivers sent their mentally ill relatives to prayer camps [28]. Financial coping strategies used by caregivers who participated in this study comprised selling belongings, pawning assets, borrowing money from relatives and others, as well as cutting other expenditures, which is likely to worsen their situation. Reducing other expenses is a common coping strategy to deal with financial difficulties [28, 30]. Given that no public health education programmes about DUD were offered at the community level and the perceived need for information, caregivers tried to obtain related information from other sources such as television, radio and social media, which helped them to better understand DUD and how to deal with these. Similar mechanisms are reported in Shamsaei, Cheraghi, & Esmaeilli [26].

Family caregivers’ ability to cope with their situation, however, was found to be impeded by stigma and a lack of support. Caregivers experienced associative stigma and explained that not only persons with DUD but also caregivers were discriminated against by their surroundings and close relatives. This is consistent with findings from Australia, where parents of substance using persons had to endure blame and criticisms from their neighbours [31]. The 2018 National Drug Control Policy explicitly recognizes that “Drug dependency is rarely appreciated as a health issue, and drug users in Myanmar face stigma, social exclusion and limited access to services.” [41, p. 8] According to the Burnet Institute, needle and syringe exchange programmes for injecting drug users, based on harm reduction approaches, had to be excluded from the services offered by their drop-in centres in Yangon, because people were afraid of having these centres in their surroundings [58]. A few caregivers indirectly pointed to the existing drug laws and explained that these increase stigma as people are afraid of the police, the court of law and imprisonment. According to the 1993 Narcotic Drugs and Psychotropic Substances Law, a person is sentenced to about five to ten years in prison if he or she is found to possess only a small amount of illicit drugs [39]. Almost 50 percent of all prisoners countrywide serve sentences for drug-related offences [41] in prisons that are known for their appalling conditions [59]. Yet, most large-scale drug traffickers have remained unscathed [39], which a few respondents also pointed out. The country’s drug laws and policies have traditionally focused on repression and punishment, undermining the human rights of those affected [60]. In 2018, the National Drug Control Policy was announced, heralding a shift from a punitive and coercive towards a harm reduction approach to drug use [43]. Yet, the 2018 National Drug Control Policy needs to be supported by further amendments of the 1993 Narcotic Drugs and Psychotropic Substances Law to ensure that standards of proportionality in sentencing for drug offences are met as discussed in Cachia [43]. In Myanmar, support from the government and other organizations for people with DUD, their caregivers, as well as other family members is inadequate at all levels. Supply side factors increased the socioeconomic and psychological burden of households with persons experiencing drug dependence. There are only two tertiary-level mental health hospitals and most of the drug treatment centres in other states and regions are not functioning well as evidenced by their low utilization rates [61]. Similar findings were reported in rural Ghana, where caregivers did not receive financial and social support at the community level because of poverty, lack of sympathy and high stigmatization [28].

Suggestions for easing caregivers’ burden

The findings in this study show that caring for persons with DUD imposes a tremendous burden on informal caregivers and their families, which is amplified by the country’s harsh drug laws, drug-related stigma and the lack of support. Given that less than one percent of government health expenditures is used for mental health, mental health expenditures need to be increased to improve treatment and rehabilitation services and ease caregivers’ financial burden. The results of this study further underline that a shift from a punitive approach to a health-focused and evidence-based harm reduction approach to deal with drug-related challenges is urgently needed as envisaged in the 2018 National Drug Control Policy. To facilitate harm reduction approaches, interventions such as targeted education campaigns to reduce the stigma associated with drug use and DUD should be prioritized. Decriminalizing drug users would help promote human rights, reduce stigma and social exclusion, and thereby ease caregivers’ burden. Moreover, reducing the stigma enshrined in the current drug law is likely to facilitate access to treatment and rehabilitation services. To increase society’s understanding of DUD-related issues, including treatment and rehabilitation services, public health education efforts could be strengthened. The study by Orford, Templeton, Patel, Copello, & Velleman [34] showed that health education can also improve the coping skills of caregivers.

Limitations

It is important to point out that this study has several limitations. First, only caregivers of persons who received treatment at the YMHH were included, which introduced a bias. The YMHH is one of the country’s two tertiary-level mental hospitals and, therefore, a flagship hospital. In addition, the burden caregivers are facing is likely to be largely underestimated as caregivers of those persons with DUD who do not receive treatment or caregivers of imprisoned persons with DUD were not included. The small sample size did not permit a clear distinction between caregivers of persons with DUD by type of substance use (amphetamine, heroin and cannabis). Also, as receiving treatment entailed registration of the family member as a “drug user” at the Ministry of Health until 2018 [43], respondents may have been afraid of voicing all their concerns due to fears of prosecution despite the registration amnesty. Last not least, given that this study uses a qualitative research design, the findings cannot be generalized.

Future research

Future studies should consider a wide range of caregivers, including caregivers of patients who receive treatment at facilities other than the YMHH, patients who do not receive any treatment, and patients who are imprisoned. These studies should adopt a quantitative or mixed methods research approach to better understand the situation of caregivers and complement the findings of this research. A larger sample size would also permit an analysis by type of substance use. Last not least, while none of the caregivers who participated in this study pointed to positive experiences from caregiving, possible benefits of caring for patients with DUD could be explored.

Conclusion

Myanmar has been facing extensive drug-related challenges, including widespread drug use despite the fact that substance users continue to face five to ten years of imprisonment. The results of this study suggest that the socio-economic and psychological burden of caring for patients with DUD is tremendous in Myanmar. Socio-economic burden consists of financial constraint, income loss, social limitation and negative impact on family cohesion. Sadness, anger, helplessness, worry, fear and guilt, on the other hand, are the main psychological distress factors. Most caregivers used active coping rather than avoidant coping, but barriers to coping exist. These include perceived stigma towards persons with DUD and their caregivers and a lack of support. Both are amplified by the country’s current drug law, highlighting that the 1993 Narcotic Drugs and Psychotropic Substances Law should be revised further.

Acknowledgments

The authors would like to express their sincere gratitude to the caregivers for participating in this research, as well as the YMHH staff for their support. The first author is grateful to Chulalongkorn University’s “Scholarship Programme for ASEAN Countries” for supporting her graduate studies. This research article is based on her thesis.