Impact Statement
Medication non-adherence can cause substantial worsening of mental health disorders in adolescent psychiatric patients. Therefore, this study presents a deeper dive into a better understanding of the challenges that cause non-adherence and coping strategies to enhance adherence, particularly among adolescents with psychiatric disorders in Malaysia. By identifying challenges associated with medication non-adherence, policies and tailored interventions can be developed. This study is written as a continued effort to advocate for changes to current global mental health practices and treatments among adolescents.
Introduction
The prevalence of children and adolescents being diagnosed with psychiatric disorders, globally and in Malaysia, is significantly increasing (Institute for Public Health, 2017; World Health Organization [WHO], 2021). According to the WHO (2003), psychotropic medications are the most common form of treatment among psychiatric patients. Hence, adherence, particularly medication adherence, is an important determinant of psychiatric treatment outcomes (Novick et al., Reference Novick, Montgomery, Treuer, Aguado, Kraemer and Haro2015). Even though considerable progress has been made in the development of psychotropic medications, improving the rates of adherence in the management of psychiatric disorders remains a worldwide problem (Neiman et al., Reference Neiman, Ruppar, Ho, Garber, Weidle, Hong, George and Thorpe2017; Ramamurthy et al., Reference Ramamurthy, Jayasree, Solomon, Rudravaram, Menon and Thilakan2023; Semahegn et al., Reference Semahegn, Torpey, Manu, Assefa, Tesfaye and Ankomah2020; WHO, 2003). Medication adherence can be defined as “the extent to which a person’s behaviour corresponds with agreed recommendations from a health care provider” (WHO, 2003, pp. 3). This includes taking the prescribed number of pills according to the prescribed dosage, time, frequency and direction (Cutler & Everett, Reference Cutler and Everett2010; Osterberg & Blaschke, Reference Osterberg and Blaschke2005).
Non-adherence, intentional or unintentional, can be demonstrated in various forms, such as missed doses, premature discontinuation of medication, alteration of medication prescription, overdose and drug holidays (Jimmy & Jose, Reference Jimmy and Jose2011; WHO, 2003). In the many measures of adherence, a cut-off point of 80% was used to distinguish adherence from non-adherence behaviour (Hatah et al., Reference Hatah, Rahim, Makmor-Bakry, Mohamed Shah, Mohamad, Ahmad, Haron, Hwe, Wah, Hassan, Rahmat, Robert and Abdullah2020; Morisky et al., Reference Morisky, Green and Levine1986; Thompson et al., Reference Thompson, Kulkarni and Sergejew2000). According to WHO (2003), there are no optimal estimates of adherence or non-adherence, but rather a multi-method approach (e.g., combining self-reporting and objective measures) should be employed in measuring adherence behaviours. In view of this, recent studies have reported that the prevalence of non-adherence for people with psychiatric disorders was in the range of 30%–65% whilst the prevalence of non-adherence among children and adolescents with psychiatric disorders was in the range of 6%–69% (Edgcomb & Zima, Reference Edgcomb and Zima2018; Hage et al., Reference Häge, Weymann, Bliznak, Märker, Mechler and Dittmann2016; Kalaman et al., Reference Kalaman, Ibrahim, Shaker, Cham, Ho, Visvalingam, Shahsbuddin, Rahman, Halim, Kaur, Azhar, Yahya, Sham, Siau and Lee2023; Ramamurthy et al., Reference Ramamurthy, Jayasree, Solomon, Rudravaram, Menon and Thilakan2023; Semahegn et al., Reference Semahegn, Torpey, Manu, Assefa, Tesfaye and Ankomah2020; Timlin et al., Reference Timlin, Hakko, Heino and Kyngäs2015). Data on the adherence rates among psychiatric patients, particularly among children and adolescents, in Malaysia are limited. However, according to the Clinical Practice Guidelines for Management of Schizophrenia (Malaysian Health Technology Assessment Section [MaHTAS], 2021), non-adherence rates among people with schizophrenia were 50%–70%. Similarly, the Clinical Practice Guidelines of Management of Bipolar Disorder (MaHTAS, 2014) reported a range of 19%–69% treatment non-adherence rates among people with bipolar disorder. Therefore, improving adherence among people with psychiatric disorders, despite the age group, in the Malaysian context, is essential for achieving the maximum benefit of medication and thus promoting better treatment outcomes (MaHTAS, 2014, 2019, 2021).
There are several challenges patients reported facing in achieving medication adherence, which all contribute to the increase of non-adherence and its consequences, such as morbidity, mortality, additional medical expenses and lower quality of life (Farrukh et al., Reference Farrukh, Bakry, Hatah and Jan2021; Malik et al., Reference Malik, Kumari and Manalai2020; Neiman et al., Reference Neiman, Ruppar, Ho, Garber, Weidle, Hong, George and Thorpe2017). According to the WHO (2003), patients can encounter life-threatening risks such as intense relapses, increased dependency or toxicity with medicines, drug resistance possibilities and increased likelihood of experiencing drug rebound effects. It is important to address these challenges as it represents a significant step in improving adherence, especially among psychiatric patients, who encounter additional challenges such as suicidal ideation, mood swings and public stigmatization (Goldstein et al., Reference Goldstein, Krantz, Merranko, Garcia, Sobel, Rodriguez, Douaihy, Axelson and Birmaher2016; Levin et al., Reference Levin, Krivenko, Howland, Schlachet and Sajatovic2016). In the many studies conducted on medication adherence among patients with psychiatric disorders, reasons for non-adherence were deemed as a multifactorial phenomenon (Gebeheyu et al., Reference Gebeyehu, Mulat, Bekana, Asemamaw, Birarra, Takele and Angaw2019; Gudeta et al., Reference Gudeta, Leta, Alemu and Kandula2023; Kvarnström et al., Reference Kvarnström, Westerholm, Airaksinen and Liira2021; Phan, Reference Phan2016; Semahegn et al., Reference Semahegn, Torpey, Manu, Assefa, Tesfaye and Ankomah2020; WHO, 2003). However, according to Kalaman et al., (Reference Kalaman, Ibrahim, Shaker, Cham, Ho, Visvalingam, Shahsbuddin, Rahman, Halim, Kaur, Azhar, Yahya, Sham, Siau and Lee2023), since children and adolescents are under the purview of parental caregivers, achieving adherence among children and adolescents with psychiatric disorders may require an added emphasis on parental factors. In contrast, several studies reported that adolescents, compared to children and adults, are more vulnerable to medication non-adherence (Brinkman et al., Reference Brinkman, Baum, Kelleher, Peugh, Gardner, Lichtenstein, Langberg and Epstein2016; Buitelaar, Reference Buitelaar2017; WHO, 2003). Adolescents’ vulnerability to non-adherence can be due to the onset of physical and psychological development implicit in adolescence (WHO, 2003). Therefore, further studies in addressing adherence issues among adolescents should be conducted.
Given the importance of medication adherence, a deeper understanding of the challenges experienced, particularly among adolescents with a psychiatric disorder in Malaysia, will help inform interventions relevant to our context (Dikec et al., Reference Dikec, Kardelen, Pilz González, Mohammadzadeh, Bilaç and Stock2022; Ho et al., Reference Ho, Jacob and Tangiisuran2017; Zarea et al., Reference Zarea, Fereidooni-Moghadam and Hakim2016). A qualitative study design may facilitate the emergence of information on medication adherence challenges unique to the Malaysian context, such as family dynamics, cultural influences, social support and other environmental factors. A qualitative study also explores the adolescent patient’s subjective experiences and uncovers underlying reasons for non-adherence (Clifford et al., Reference Clifford, Crabb, Turnbull, Hahn and Galletly2020; Ho et al., Reference Ho, Jacob and Tangiisuran2017). Therefore, this study seeks to explore the themes that emerge on challenges underlying medication adherence and strategies to improve it in adolescents with psychiatric disorders in Malaysia using a qualitative design.
Methodology
Study Design
An exploratory, qualitative research design was employed in this study. This study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ; Tong et al., Reference Tong, Sainsbury and Craig2007).
Participants
Purposive sampling was used to recruit adolescent psychiatric patients, aged 11 to 19 years old, who are being prescribed psychiatric medications. The inclusion criteria of participants in this study include: (1) attending an inpatient or outpatient psychiatric facility; (2) being diagnosed with a psychiatric disorder; (3) being prescribed psychiatric medications by psychiatrists; (4) being able to understand and speak Bahasa Malaysia; (5) being able to provide informed assent (if below 18 years old) or informed consent (if 18 years old and above); and (6) a parent or guardian providing informed consent for their child/ward (if below 18 years old) to participate in this study. Participants experiencing active psychosis or possessing any visual or auditory impairment that could compromise participants’ ability to understand or follow the study directions were excluded from the study. Participants were screened and recruited upon referral from professional psychiatrists. All 17 adolescent psychiatric patients who were screened were recruited for this study. The process of recruiting and interviewing participants was concluded when data saturation was achieved (Boddy, Reference Boddy2016; Guest et al., Reference Guest, Bunce and Johnson2006; Mason, Reference Mason2010). Data analysis was conducted in parallel with interviews, allowing researchers to reaffirm data saturation in the subsequent 2 interviews after achieving saturation with patient 15.
Procedures
Participants were briefed on the purpose, procedures and ethical principles of the study. For those who were under 18 years old, both the adolescent and their parent/guardian were briefed. Informed consent was provided by participants who were 18 years of age and older. Adolescents below 18 years old provided informed assent, whilst their parents/guardians provided informed consent. Then, according to the participant’s availability and preference, the mode (online or face-to-face) and time of the in-depth interview were scheduled. Six of the interviews took place in private rooms at public hospitals, whilst the remaining eleven interviews were conducted online via Zoom, with only the interviewer present. Both the face-to-face and online interviews carried out in this study varied in length from 20 minutes to approximately 1 hour. The interviewees were aware of the interviewer’s background and had no prior or ongoing relationship with the interviewer. With participants’ consent, all interviews were audio recorded and transcribed verbatim into Bahasa Malaysia or English. Since this study complies with the Declaration of Helsinki, interview transcripts were anonymized (e.g., removing names of people and places) to preserve participant confidentiality. Peer debriefing strategies were utilized in this study to enhance the validity of the information gathered from the interviews (Creswell & Creswell, Reference Creswell and Creswell2018). Transcripts were distributed to the research team and discussions on ways to improve interview techniques were conducted throughout the data collection process to ensure richer qualitative data were captured.
The interview guide developed by the research team was semi-structured. The core interview questions were developed in accordance with the aims of this study, an extensive literature review, and input from experts in the field. The interview questions were developed in Bahasa Malaysia and finalised by the multidisciplinary research team after receiving input from an external evaluator. The evaluator, who is a registered counsellor, evaluated the interview questions based on their coverage of the study aims and its applicability to the target population. The interview guide is presented in Table A1. The interview guide was pilot-tested with a non-participant adolescent psychiatric patient, which resulted in a few wording changes. Due to the semi-structured nature of interviews, apart from the core questions in the guide, probing questions were asked in areas that needed more clarification or elaboration.
Data Analysis
The thematic analysis conducted in this study was guided by the six steps outlined by Braun and Clarke (Reference Braun and Clarke2006, Reference Braun and Clarke2021). All interview transcripts were thematically analysed in the original language using the N-VIVO version 11 software (QSR International Ltd., Australia) by C.R.K. and reviewed whilst listening to the recording by C.Q.C. to ensure accuracy and consistency. Participants’ personal identifiers, as well as demographic profiles (i.e., age, race, religion), were removed from the transcripts to reduce the risk of biases in the analysis. Noticeable pauses and non-verbal behaviour such as laughter were included in the transcripts, as were interruptions and inaudible words. The interviews were transcribed as soon as possible following the occurrence and were aligned with the interviewer’s field notes to prevent any ambiguity and inaccuracies. Then the data were systematically coded and collated by C.R.K., N.I. and S.C.S. to generate meaningful themes. The coding process begins with the identification of meaningful codes within the transcripts. Codes identified were then grouped into categories and the naming of themes was conducted based on the connections made between the categories. There was consensus about the codes, categories and themes developed among the researchers.
An inter-rater reliability analysis using Cohen’s Kappa statistic was performed by three professionals (i.e., a child and adolescent psychiatrist, a senior nursing lecturer and a licenced professional counsellor) to determine the level of agreement on themes, subthemes and codes among raters. Cohen’s Kappa value of κ =.96 was obtained and was considered an almost perfect rate of agreement (Cohen, Reference Cohen1960; Landis & Koch, Reference Landis and Koch1977). The final themes were confirmed by discussion and consultation within the research team until consensus was achieved.
Results
Participant characteristics
There was a total of 17 participants. As shown in Table A2, most of the participants in this study were female (n = 13), Malay (n = 13) and Muslim (n = 13). The mean age of participants was 16.53 years (SD = 1.91; Table A2).
All participants in this study reported non-adherence to medication. The types of medication non-adherence reported by participants in this study were either erratic non-adherence (n = 10) and/or intelligent non-adherence (n = 10). Skipping dose(s) (n = 3), taking medications depending on symptoms instead of prescribed timing (n = 5), overdosing (n = 1) and altering medication dosage without a doctor’s advice (n = 1) were among the types of intelligent non-adherence participants reported.
Themes and Subthemes
As shown in Table A3, the findings of this study explain a range of challenges, coping strategies and protective factors for improving medication adherence among adolescent psychiatric patients. A total of 37 codes were classified into 3 main themes and 18 subthemes.
Theme 1: Medication adherence challenges. Participants reported various challenges with medication taking. In this regard, thirteen challenges were identified.
Subtheme 1: Medicine side effects. All participants indicated that it was challenging to remain adherent to medication when side effects (physical, emotional and cognitive) were part and parcel of medication taking. Most participants (n = 16) reported experiencing physical side effects such as drowsiness, loss of appetite, nausea, weight gain, fever, change in menstrual period timing and indigestion:
Like this Quetiapine, if I eat, I will feel very sleepy until I cannot do my work.
(P05, Female, 19)Several participants (n = 6) stated having noticed that their emotional state had changed, such as the blunting of emotions:
… the other is like, after they increase the dosage, it cancelled out all the other emotions, not just the sad emotions. I start to feel less sensitive towards jokes and all.
(P09, Female, 18)One participant highlighted that medication has caused significant cognitive changes, particularly in the ability to understand learning materials at school:
I’m like slow to understand in my studies, that’s all I notice. The rest is like okay, lah. When I didn’t eat it before, it was easy for me to understand, but when I started taking this medicine, I find it difficult. I have to read it many times to understand.
(P02, Female, 15)Some participants (n = 3) reported non-adherence when the medication administered did not lead to significant changes in existing symptoms:
Because for me at first, when I ate it, I felt like the medicine didn’t give me any effect. Meaning my problem or symptoms didn’t change.
(P12, Female, 14)Subtheme 2: Forgetfulness. Several participants (n = 11) reported non-adherence due to forgetfulness:
There are few times I legitly forget. I completely forgot where I put my medicine and the time to take it.
(P01, Female, 19)Subtheme 3: Too busy or tired. Two participants stated that being busy or tired had contributed to non-adherence:
Maybe because it was at night, I returned home from school, had a lot of activities in school, is tired, then when I reached home I just slept straight away.
(P15, Male, 14)Subtheme 4: Procrastination behaviour. Participants (n = 2) were more likely to inadvertently skip a dose(s) when medication taking is delayed or postponed:
That morning, I will remind myself that I have to take the medicines later at night, but when the night comes, I will still remember to take them but, I’ll be like later lah. But then I will unintentionally fall asleep.
(P11, Female, 14)Subtheme 5: Non-adherent behaviour. Some participants (n = 3) in this study portrayed intentional non-adherent behaviours:
I did purposely didn’t take my medicine. I purposely didn’t eat it because I didn’t think it was necessary before this. But recently, I am taking my medicine.
(P13, Female, 16)Subtheme 6: Lack of knowledge or insights about the importance of taking medication and medication adherence. Participants’ (n = 7) lack of knowledge or insights, specifically on the importance of medication adherence, were reported to influence adherence behaviour:
To be exact, I am not sure if taking medication at the exact time is important. I think it depends la. I just take it when I can.
(P16, Female, 17)
I don’t have any medication background. So, for me, it was like, “what this medicine is going to do”? … I think it depends on the severity that we take medicine because medication may help you. So, I think it’s compulsory to take medicine according to the instructions at the beginning. Then, if your symptoms are not severe, you can maybe take it when needed la.
(P06, Male, 19)Subtheme 7: Negative thinking towards medication. Participant’s personal thoughts, such as fear of medication dependence (n = 4), fear that medicine will harm health in the future (n = 3) and feelings of dislike towards medication (n = 2), contributed negatively towards medication adherence:
Sometimes I also read that this medicine cannot be taken from a younger age, I read on the internet that it is not good because it can damage the kidneys … I am worried that my life will be dependent on the medicine.
(P10, Female, 16)
I think I changed my medications 3 times because I am the kind that doesn’t like to take medicine, so every time I will skip or just choose to not eat it at all.
(P12, Female, 14)Subtheme 8: Stigma regarding psychiatric medication. Participants expressed concerns about stigma regarding psychiatric medication from family and significant others (n = 9) as well as perceived stigma, which possibly originated from cultural influences, mass media, or society (n = 14). One of the participants noted that the stigma surrounding psychiatric medications had instilled a great fear about medication outcomes:
I heard one of my friends say, if I start taking medication and if one day, I didn’t take it, they say I will be far worse and might be called crazy. So, when the doctor said I need to take medicine, I felt so scared cause I am like, “If I take it, I might get worse than ever”.
(P01, Female, 19)Another participant reported the possibility of experiencing a sense of distress if her condition was disclosed to others:
No. I keep it a secret. I just be quiet lah. I think that they will say like “Why you need pill? Are you crazy? You don’t need pill and all.” If I hear those words, I will feel like “You don’t know my situation”, so I will also feel down lah.
(P14, Female, 14)Subtheme 9: Negative feelings towards medication. Some of the negative feelings reported by participants in this study were denial (n = 3), annoyance (n = 1), ignorance (n = 3), shame (n = 3) and depressed mood (n = 1). Negative feelings towards medication are prompted by stigma about medication, medication regimes and/or other personal experiences with medication, which were commonly reported as a significant barrier to adherence and a barrier that participants must overcome in the medication-taking process:
Early on at first, I was like, my first reaction was like “Oh is there something wrong with me” and then from there I kept telling myself, that “I am normal, then why do I need to take medicine.” So at first, I can say that many medicines were wasted.
(P17, Female, 18)
No, but I don’t like taking medicine. So I was like “Medicine! Medicine again!” and want to skip or not eat it at all.
(P12, Female, 14)Subtheme 10: The COVID-19 Situation. The COVID-19 pandemic, which led to the movement control order in Malaysia, was seen as a challenge in the medication-taking process by two participants in this study. Participants were not able to restock their medications on time due to movement restrictions. This situation led participants to think that since the virus was very deadly, mental health care was not a priority at the time.
Subtheme 11: Familial factors. Participants (n = 10) described negative family relationships (n = 5) and a lack of family involvement (n = 4) as well as support (n = 4) was associated with poorer adherence. One participant described dysfunctional family relationships and the lack of support received as leading to intelligent non-adherence:
I started going, I’m not sure, but I’ve been following up under this psychiatrist for 3 years, since Form 1 and now I’m Form 3. Then I go, firstly because of family problems, and until now it is still not solved. In the past, my parents and grandmother did not support me taking medicine. They said that this medicine is not good and will cause quite bad effects that will come later. I was forced to follow what they said.
(P05, Female, 15)whilst another participant described how the lack of family involvement in the medication-taking process has led to poorer adherence due to her inability to independently keep up with the medication regime:
I think no because I can handle it on my own. I do not rely on anyone because I know everyone if busy. So, I have to rely on myself, have to remind myself, because my mother is busy with her work. If I remember, then I will take my medicine.
(P13, Female, 16)Subtheme 12: Social factors. Another external factor that was reported to be a significant challenge in the medication-taking process was poor social relations (n = 7), and a lack of social support (n = 9). Most participants (n = 14) agreed that social groups can greatly impact participants’ feelings, which is in relation to participants’ medication-taking behaviour.
I personally ran some campaigns, partnered up with media and Instagram pages, and whatnot, trying to spread awareness. But I did get backlash from that, with people saying that I am attention-seeking. That hurt me. Now, I am totally closed.
(P09, Female, 18)
I think not. They don’t really concern much. Last time when I was working and, at times, was clumsy or not able to do my job well, some colleagues looked down on me and despised me lah.
(P07, Male, 19)Subtheme 13: Health care system factors. Several participants reported challenging issues faced in the Child and Adolescent Mental Health Services (CAMHS) system (n = 3):
During the beginning, when I started to take pills, my psychiatrists reminded me to take pills, which is something you don’t get in a general hospital. The most important part is that when I need an immediate session, like when I have suicidal thoughts, I can schedule a session with my psychiatrists the next day itself. But in government hospitals, you have to go through an entire process, and there is like a waiting list.
(P09, Female, 18)Some participants reported dissatisfaction with psychiatrists (n = 3) as a challenge faced in the medication-taking process:
Urmm‥ I want to know what my medicine is like. I asked the doctor but the doctor couldn’t explain it to me.
(P05, Female, 15)Theme 2: Medication Adherence Coping Strategies. A total of ten coping strategies, grouped into three main themes, were observed in this study.
Subtheme 1: Emotion-Focused Strategies. The most common emotion-focused strategy participants (n = 9) used in dealing with medication adherence challenges was accepting that they were ill:
I feel we should just accept la. Accept that you have this disease, then you must take medicine. You just follow their instructions, just do it and see lah.
(P08, Male, 18)Some participants positively reframed thoughts (n = 8) and were medically adherent in order to achieve their personal goals:
I am studying Psychology in x College. Because I have these intrusive thoughts, so I was interested in this course and want to study this course also. So, I have to cure myself before I cure someone else.
(P08, Male, 18)One of the participants used humour to reduce the perceived stress of taking psychiatric medication:
I really don’t mind. Even me and my family will make jokes about it, like “ahh ahh, the whole family have to take medicine, the whole family is crazy”.
(P03, Female, 17)Subtheme 2: Problem Focused Strategies. All participants in this study reported applying problem-focused strategies, such as active coping (n = 9), gaining social support from family, friends and psychiatrists (n = 16), as well as utilising instrumental support (n = 6), in the effort to stay medically adherent:
So far gaining weight is the major problem. I just have to be careful with what I eat and I try not to overeat lor.
(P07, Male, 19)
Yes. They do know. I ask my best friend, she even remind me because we always eat lunch together in school, and whenever we are eating she will be like “weh your medicine”. I also have a reminder on my phone to remember taking medicine.
(P03, Female, 17)Subtheme 3: Maladaptive Coping Strategies. Some participants relied on maladaptive coping strategies, such as the use of food and beverages (n = 1), behavioural disengagement (n = 4), self-distraction (n = 1) and self-blame (n = 1), to cope with medication side effects:
I remember drinking a lot of coffee and Redbull to cope with the side effects. I mean like 3 cups of coffee managed to keep me awake.
(P09, Female, 18)Theme 3: Medication adherence protective factors. Amidst the challenges and strategies in improving medication adherence described by participants, two significant protective factors were identified in this study.
Subtheme 1: Social support. Most participants (n = 11) agreed that strong social support from family members, friends, teachers and psychiatrists provided encouragement for participants to maintain adherence:
Most of my family members know. They did ask a bit more but after that they were okay with it. Surprisingly, they were quite supportive. It was also okay sharing with my friends because they understood. They said I was brave enough to go to the psychiatrists and encouraged me.
(P04, Female, 18)
Alhamdulilah. My class teacher is positive. He/She supported me to continue striving.
(P15, Male, 14)
No. Even though mine was government hospital, the staffs was very welcoming. They were very open about everything, so it was super convenient. And they make me feel comfortable, that’s the most important thing during this journey.
(P06, Male, 19)Subtheme 2: Feeling better because of the medicine. When asked about the reason participants still adhere to medications despite the challenges faced, almost all participants (n = 16) reflected on past positive experiences with medications. Participants recalled feeling better and experienced symptom relief after medications:
I think it’s helpful for me and it helped me a lot, because I know that this is like some stigma, you know going to the mental hospital and taking pills, there is a taboo but I think going there has helped me a bunch.
(P03, Female, 17)Discussion
Findings from the present qualitative study explored the challenges underlying medication adherence and coping strategies employed to improve adherence among adolescents with psychiatric disorders in Malaysia. The main findings of this study suggest that patient-related challenges (i.e., medicinal side effects, intentional or unintentional behaviours, stigma, lack of knowledge and insights), social challenges (i.e., dysfunctional relationships, stigma or discriminatory conduct, lack of involvement), health care team/system-related challenges (i.e., therapeutic alliances, shortage of manpower and medication stock) and pandemic-related factors contribute to the reasons of non-adherence among adolescent psychiatric patients in Malaysia. Adolescents engaged in both adaptive and maladaptive coping strategies to deal with non-adherence. In addition, the presence of social support and perceived positive medicinal side effects were identified as protective factors in this study.
A prominent challenge experienced by participants was the side effects of medications. According to Emilsson et al. (Reference Emilsson, Gustafsson, Öhnström and Marteinsdottir2016), adolescents with fewer perceived side effects tended to be more medically adherent. Likewise, adolescents in this study reported the struggles of adhering to medication due to its unpleasant physical, emotional and cognitive side effects. Additionally, the absence of the desired effect of alleviating psychiatric symptoms led the adolescents to believe that the medication prescribed was not beneficial. Consistent with past studies, a sense of uncertainty or distrust in the efficacy of medications can negatively affect adherence levels in adolescents (Dikec et al., Reference Dikec, Kardelen, Pilz González, Mohammadzadeh, Bilaç and Stock2022; Gray & Deane, Reference Gray and Deane2016; Marrero et al., Reference Marrero, Fumero, de Miguel and Penate2020; McMillan et al., Reference McMillan, Wilson, Stapleton and Wheeler2020).
This study showed that adolescents used both adaptive and maladaptive coping strategies to deal with non-adherence challenges. Aside from active coping strategies such as rescheduling and implementing healthy habits, adolescents also tend to resolve to maladaptive coping strategies such as the use of caffeinated drinks and other medications, behavioural disengagement and self-distractions. According to a qualitative study conducted by Blixen et al. (Reference Blixen, Levin, Cassidy, Perzynski and Sajatovic2016) on coping strategies used by poorly adherent patients with bipolar disorder, maladaptive coping strategies that were identified were replaced with better coping strategies (e.g., problem-focused and emotion-focused strategies). Maladaptive coping strategies pose negative consequences to adolescent’s physical health and will likely aggravate existing mental health conditions (Addy et al., Reference Addy, Agbozo, Runge-Ranzinger and Grys2021; Murphy et al., Reference Murphy, Gardner, Kisely, Cooke, Kutcher and Hughes2015). Corresponding to previous studies, despite the unpleasant side effects adolescents experienced, almost all adolescents in this study identified and expressed the positive effects of medications, such as symptom reduction, improvement in social skills, increased self-confidence and improved attention in tasks, as a protective factor against medication non-adherence (Clifford et al., Reference Clifford, Crabb, Turnbull, Hahn and Galletly2020; Dikec et al., Reference Dikec, Kardelen, Pilz González, Mohammadzadeh, Bilaç and Stock2022).
Patient-related challenges in taking medicine were overwhelmingly the main reasons for unintentional and intentional medication non-adherence among adolescents with psychiatric disorders. Several studies have reported unintentional behaviours, such as forgetfulness, which may not only be the reason for non-adherence but also the cause of overdose (Dikec et al., Reference Dikec, Kardelen, Pilz González, Mohammadzadeh, Bilaç and Stock2022; Stentzel et al., Reference Stentzel, van den Berg, Schulze, Schwaneberg, Radicke, Langosch, Freyberger, Hoffmann and Grabe2018). According to Elhosary et al. (Reference Elhosary, Merranko, Goldstein, Hafeman, Goldstein, Gill, Hower, Axelson, Hunt, Yen, Diler, Ryan, Keller, Weinstock, Strober and Birmaher2023), forgetfulness can be worsened by a lack of supervision by parents, especially among adolescents with cognitive difficulties. In contrast to findings from McMillan et al. (Reference McMillan, Wilson, Stapleton and Wheeler2020), which stated the loss of adolescents’ autonomy when parents intervene in medication regimes, the adolescents in this study reported actively relying on prompts from family and friends in coping with forgetfulness and ‘being busy or tired’ to take medicine. Similar to other past studies, the importance of phone applications, alarms and reminder notes in dealing with adherence challenges was also highlighted by adolescents in this study (Clifford et al., Reference Clifford, Crabb, Turnbull, Hahn and Galletly2020; Dikec et al., Reference Dikec, Kardelen, Pilz González, Mohammadzadeh, Bilaç and Stock2022; Ho et al., Reference Ho, Jacob and Tangiisuran2017; Stentzel et al., Reference Stentzel, van den Berg, Schulze, Schwaneberg, Radicke, Langosch, Freyberger, Hoffmann and Grabe2018).
Intentional behaviours such as procrastination, non-adherence on purpose, adolescents’ negative thinking and feelings towards medication, as well as perceived stigma, were major patient-related challenges faced by adolescents in this study. Given the unique physical and psychological changes that are implicit in adolescence, this study’s findings regarding intentional non-adherence and adolescents’ negative feelings towards medication as adherence challenges are consistent with previous studies (Dikec et al., Reference Dikec, Kardelen, Pilz González, Mohammadzadeh, Bilaç and Stock2022; McMillan et al., Reference McMillan, Wilson, Stapleton and Wheeler2020; Osterberg & Blaschke, Reference Osterberg and Blaschke2005). Like previous studies, adolescents expressed a sense of acceptance and the use of humour in coping with negative feelings towards medication (Levin et al., Reference Levin, Krivenko, Howland, Schlachet and Sajatovic2016; Timlin et al., Reference Timlin, Hakko, Heino and Kyngäs2015; Zarea et al., Reference Zarea, Fereidooni-Moghadam and Hakim2016). Unlike findings from a study conducted by Ho et al. (Reference Ho, Jacob and Tangiisuran2017), adolescents in this study reported that the perceived stigma of psychiatric medications as well as negative thinking, such as fear of medication dependence, medication dislikes and fear that medicine will harm health in the future, were not formed from religious or cultural beliefs but rather false beliefs obtained from society. Several studies have reported that Eastern cultures tend to hold more negative beliefs and stigmatization of psychiatric medications as compared to Westerners (Deng et al., Reference Deng, Zhai, Ouyang, Liu and Ross2022; Ho et al., Reference Ho, Jacob and Tangiisuran2017; Zarea et al., Reference Zarea, Fereidooni-Moghadam and Hakim2016). Yet the findings of this study attest otherwise. A study conducted by Gudeta et al. (Reference Gudeta, Leta, Alemu and Kandula2023) found that perceived stigma, when reframed differently and accompanied by a stronger belief in the necessity to medicate, can be a contributing factor in increasing adherence. Similarly, coping strategies such as positive reframing of stigmatising statements, have enabled adolescents in this study to stay adherent. This study’s findings could argue that adolescents’ limited knowledge and impaired insights regarding the effects of medication in minimising symptom severity, could be the underlying cause of stigma and non-adherence (Dikec et al., Reference Dikec, Kardelen, Pilz González, Mohammadzadeh, Bilaç and Stock2022; Levin et al., Reference Levin, Krivenko, Howland, Schlachet and Sajatovic2016; McMillan et al., Reference McMillan, Wilson, Stapleton and Wheeler2020; Tessier et al., Reference Tessier, Boyer, Husky, Bayle, Llorca and Misdrahi2017; Zarea et al., Reference Zarea, Fereidooni-Moghadam and Hakim2016). This finding supports the need for psychoeducational interventions among adolescents with psychiatric disorders.
Stigma, experienced by family, friends and significant others, is one of the common social-level challenges faced by adolescents in this study (McMillan et al., Reference McMillan, Wilson, Stapleton and Wheeler2020). When asked to further elaborate on stigmatising statements made by family and friends, adolescents in this study expressed not receiving accurate explanations. This can be attributed to the inadequate knowledge and scarcity of resources possessed by family and friends regarding psychiatric medications (Deng et al., Reference Deng, Zhai, Ouyang, Liu and Ross2022; Marrero et al., Reference Marrero, Fumero, de Miguel and Penate2020; Zarea et al., Reference Zarea, Fereidooni-Moghadam and Hakim2016). According to a qualitative study conducted by Hanafiah and Bortel (Reference Hanafiah and Van Bortel2015), the prevalence of stigma surrounding mental illness in Malaysia is high, and family and friends were reported as the main perpetrators of discriminatory conduct. Consistent with previous findings, social stigma has constrained proper adherence and is a significant challenge in improving adolescents’ mental well-being (Chai et al., Reference Chai, Liu, Mao and Li2021; Deng et al., Reference Deng, Zhai, Ouyang, Liu and Ross2022; Dikec et al., Reference Dikec, Kardelen, Pilz González, Mohammadzadeh, Bilaç and Stock2022; McMillan et al., Reference McMillan, Wilson, Stapleton and Wheeler2020). Family and friends do play a major role in helping adolescents with psychiatric disorders cope with medication adherence challenges (WHO, 2003). As aforementioned, even if adolescents are capable of sole responsibility for treatment regimens, the lack of involvement or support from families is a major challenge for adolescents who are still under the purview of a parent or parental caregiver (Kalaman et al., Reference Kalaman, Ibrahim, Shaker, Cham, Ho, Visvalingam, Shahsbuddin, Rahman, Halim, Kaur, Azhar, Yahya, Sham, Siau and Lee2023; Marrero et al., Reference Marrero, Fumero, de Miguel and Penate2020; McMillan et al., Reference McMillan, Wilson, Stapleton and Wheeler2020; Nagae et al., Reference Nagae, Nakane, Honda, Ozawa and Hanada2015). In line with previous findings, adolescents in this study also reported the negative effects of conflicts and dysfunctional relationships with family members and friends on adherence (Elhosary et al., Reference Elhosary, Merranko, Goldstein, Hafeman, Goldstein, Gill, Hower, Axelson, Hunt, Yen, Diler, Ryan, Keller, Weinstock, Strober and Birmaher2023; Timlin et al., Reference Timlin, Hakko, Heino and Kyngäs2015). Support obtained from families, social groups and health care professionals not only assisted adolescents in dealing with challenges but also served as protective factors that mitigated the adverse effects of other medication adherence challenges.
Health care team/system-related challenges were the least reported challenge of adherence reported by adolescents in this study. Therapeutic alliances, either collaborative or authoritative, were the most prominent service-related factor of adherence (Andrade-González et al., Reference Andrade-González, Hernández-Gómez, Álvarez-Sesmero, Gutiérrez-Rojas, Vieta, Reinares and Lahera2020; Chakrabarti, Reference Chakrabarti2018). Adolescents in this study reported that beliefs and perceptions towards psychiatric medication can be shaped by health care professionals’ speech and conduct, which thereby determine medication adherence. Contrary to findings from Clifford et al. (Reference Clifford, Crabb, Turnbull, Hahn and Galletly2020), adolescents in this study were not concerned with the nature of the provider-patient relationship (i.e., collaborative, authoritative), instead, adolescents paid attention to the manner of service provided. There are several past studies that support the findings of this study on the important aspects of service provided by healthcare professionals (Ho et al., Reference Ho, Jacob and Tangiisuran2017; McMillan et al., 2020; Robards et al., Reference Robards, Kang, Usherwood and Sanci2018). The aspects are the display of a desire to promote patient health, active patient engagement and a non-judgmental environment. Besides that, similar to a study conducted by Deng et al. (Reference Deng, Zhai, Ouyang, Liu and Ross2022), some adolescents in this study revealed that the shortcomings of the CAMHS system, such as insufficient workforce, which led to the frequent change of psychiatrists, as well as the shortage of medication stock, were part of the health care team/system-related challenges that have led to non-adherence, especially during the COVID-19 outbreak.
In contrast to WHO’s multifactorial phenomenon that highlights socioeconomic-related factors towards adherence, the present qualitative study did not identify any connection between factors pertaining to adolescents’ demographic or socioeconomic profile and medication adherence (WHO, 2003). This study supports the finding from Both et al. (Reference Both, Mechler, Niemeyer, Jennen-Steinmetz, Hohmann, Schumm, Dittman and Hage2021), which stated that demographic and socioeconomic factors were considered irrelevant in predicting psychiatric adolescents’ adherence levels. However, findings from a recent study conducted by Demir et al. (Reference Demir, Guneysu, Sancaktar, Sahin, Elboga and Altindag2021) correspond with the findings of this qualitative study on the novelty of pandemic-related factors towards medication adherence. The effects of the movement control order due to the COVID-19 outbreak and adolescents’ focus on recovery from the COVID-19 infection made it harder for patients to obtain medications, thus resulting in impaired medication adherence. Adolescents did not use any coping strategies to resolve medication adherence challenges that were pandemic-related. According to Wang et al. (Reference Wang, Yao, Wang, Wang and Guo2022), pandemic-related factors are complicated and diverse, thereby limiting opportunities for adolescents to cope with it independently.
Strengths and Limitations
Since the study findings are solely based on adolescents’ opinions and experiences, the limitations of this qualitative study include the existence of self-reporting biases. Future studies should consider triangulating findings from children and adolescents with more comprehensive perspectives (e.g., parents, teachers, healthcare professionals) to reduce biases. Moreover, the study findings cannot be generalised to adolescents beyond this study setting, as most of the adolescents in this study were female and of Malay ethnicity.
Despite the small sample size recruited in this study, data saturation did occur. Hence, findings regarding challenges and coping strategies for adherence can be applied to all populations. This qualitative study provided an in-depth understanding and contextual insight into the reasons for adolescents’ adherence and non-adherence, which is relatively sufficient to inform the development of policies and tailored interventions.
Study Implications
The findings of this study have suggested several implications aimed at improving medication adherence among adolescents with psychiatric disorders. Given the significant impact of medication side effects and the lack of knowledge and insight among adolescents, there is a critical need for educational initiatives to inform patients about the benefits and potential side effects of medications. These initiatives can also be integrated into school curricula or community health promotion programs, to reduce stigma, improve public understanding as well as foster a supportive and non-judgmental environment that encourages adherence. This study also recognizes the importance of therapeutic alliances between healthcare providers and adolescents, especially in reviewing treatment plans or helpful strategies for improving medication adherence, such as weighing possible benefits of the medications versus possible risks of non-compliance, specifically symptom exacerbation and relapse. Policies aimed at addressing healthcare system deficiencies and improving the quality of mental health services are necessary to ensure continuity of care that could significantly improve medication adherence rates. The identification of diverse medication adherence coping strategies, such as automated reminders about dosing schedules, suggests future researchers explore the role of technology in offering innovative solutions to adherence challenges identified.
Conclusions
In summary, although this study did not find a significant connection between adolescents’ demographic or socioeconomic profile and medication adherence, it still supports the notion that adherence is influenced by a variety of factors (e.g., social factors, health care team/system factors, therapy-related factors and patient-related factors), which aligns with the World Health Organization’s multifactorial approach model to adherence. This qualitative study has also shed light on the effects of Brief COPE strategies in response to medication adherence challenges, especially in a culturally diverse country like Malaysia. By addressing the challenges of adherence through the application of the practical coping strategies highlighted in this study, adherence levels among adolescents with psychiatric disorders can be improved.
Open peer review
To view the open peer review materials for this article, please visit http://doi.org/10.1017/gmh.2024.80.
Data availability statement
The data that support the findings of this study are available from the corresponding author, N.I., upon reasonable request.
Acknowledgements
The author would like to thank Assoc. Prof. Dr. Mimi Fitriana and Assoc. Prof. Dr. Ooi Pei Boon for providing input in developing the interview guide. Thanks to Asst. Prof. Dr. Sharifah Munirah Binti Syed Elias, Dr. Mohd Radzi Tarmizi A Halim and Dr. Chee Kwan Foong for reviewing and refining the themes and quotations identified in this study. The authors are also grateful for the collaboration of all participants who generously shared their experiences in this study.
Author contribution
N.I. and C.S.S. contributed to the conceptualization of this study. U.V., F.N.A.R., F.A.S. and M.R.T.A.H. contributed to the collection of data for this study. C.R.K., N.I., C.Q.C. and C.S.S. conducted the formal analysis and interpreted the data. C.R.K. wrote the original draft of the manuscript. N.I., C.S.S., M.C.H., U.V., F.N.A.R., F.A.S. and M.R.T.A.H. contributed to reviewing and editing subsequent drafts of the manuscript. All authors have read and agreed to the final version of the manuscript.
Financial support
This research was supported by funding from the Fundamental Research Grant Scheme from the Ministry of Higher Education (FRGS/1/2020/SS0/UCSI/02/1).
Competing interest
The author(s) have declared that there were no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
Ethical Standard
This study was approved by the Medical Research and Ethics Committee (MREC), Ministry of Health Malaysia (NMRR-20-754-53871), Research Ethics Committee, Universiti Kebangsaan Malaysia (JEP-UKM-2021-886) and was conducted according to the guidelines of the Declaration of Helsinki.
A. Appendices
Semi-structured interview guide
Characteristics of adolescent psychiatric patients (n = 17)
Emerged themes, subthemes and codes of the study
Open access
Comments
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