The Lived Experience of Parent Caregivers of Adolescents with Mental Illness: A Phenomenological Study

INTRODUCTION

A mental disorder pertains to conditions characterized by alterations in emotional states, cognitive processes, or conduct, often accompanied by distress and/or difficulties in effectively participating in social, occupational, or familial responsibilities. ¹ These mental health issues can lead to a range of psychosocial challenges, including a reduced quality of life for the family members of the affected individual and an amplified sense of social detachment experienced by both the individual and his/her caregiving family members. ² Mental health conditions have gained recognition as a prominent contributor to disability worldwide. Individuals with mental and psychosocial impairments constitute a substantial portion of the global population. ³ On a global scale, approximately 450 million individuals experience mental health issues concurrently. Among them, there are 121 million individuals coping with depression, 24 million managing schizophrenia, and 37 million grappling with dementia. In 2022, mental illness constituted 12.5% of the total global disease burden, 5% of which were diagnosed with depressive disorders. ^{4 , 5}

In Oman, the only published data available regarding mental disorders among adolescents in Oman can be found in the Ministry of Health (MoH) annual report. This report reveals that nearly 5,000 children, aged up to 11, have received treatment within government institutions for mental health issues. ⁶ The MoH annual report for 2016 delves into mental health concerns and documents the total visits to psychiatric clinics at MoH facilities. Specifically, the report outlines that among children aged 0-11 years, there were 4,991 cases, comprising 3,386 girls and 1,605 boys. Moving on to the age groups of 12-19 and 20-44, there were 4,978 and 51,190 total visits, respectively. Notably, across all three age groups, women sought mental health services more frequently than men. Among those aged 12-19, there were 2,513 girls and 2,465 boys, while in the 20-44 age range, there were 31,805 female cases compared to 20,385 males, as indicated in the report. Comparison of 2016 to previous year showed that there were 150 more cases, with the total number of visitors reaching 99,063 in 2015. In terms of governorates, North Al Batinah had the highest number of visits, with 23,938, followed by Muscat with 20,710 visits. Conversely, Al Buraimi reported only 21 cases. ⁶

The mental health and disability symptoms in adolescents can have a widespread impact, extending beyond the affected child to affect those around them, including their families. ⁷ Such circumstances can bring about unfavorable consequences within the family dynamic. ⁷ The increased time and attention parents must devote to caregiving necessitates significant changes in their daily routines and to both formal and informal relationships. Parenting a child with a mental illness is a multifaceted and emotionally charged experience that profoundly affects parents on various levels. ⁸

Early identification of mental illness in adolescents can be particularly challenging due to the initial indiscriminate nature of the symptoms, often resulting in delayed therapy and progression of negative symptoms. ⁹ That is, these symptoms might not exhibit clear patterns or characteristics that would readily indicate a particular mental health disorder. Typically, parents experience significant anxiety when signs of deteriorating mental health become apparent in their children. ¹⁰ The journey of seeking treatment usually commences with the quest for a suitable support system. In many Arab cultures, parents often turn to religious figures or sheiks to recite the Quran for their children, believing that they may be afflicted by envy or evil spirits. ¹¹ Unfortunately, this belief can further postpone appropriate treatment, leading to a decline in the child’s social and global functioning ¹² and hindering their ability to live independently. ¹³ Consequently, parents face difficulties accessing timely healthcare services, often having to endure lengthy waiting lists and extended times of appointment. ⁸

Psychiatric care services are predominantly delivered through outpatient mental health clinics, which are often ill-equipped to meet the daily needs of individuals with mental illnesses. Parent caregivers who reside with children suffering from mental illness must juggle various responsibilities, such as preparing meals for the family, household chores, alongside administering medications, arranging transportation, and managing appointments. ^{13 , 14} If they have more than one child, parents also have to tend to the needs of their other children. On a personal level, parents of children with mental illness often cope with constant stress, depression, grief, worry, and anxiety. ¹⁵ In certain cases, parent caregivers, especially those dealing with mental illnesses like schizophrenia, may even experience violence from their children. ¹⁶ Parents frequently grapple with concerns about their child’s future, including worries about long-term medication dependence, the impact of their child’s illness on educational and career prospects, and their child’s ability to form meaningful relationships. ^{8 , 17} This pervasive uncertainty becomes a constant companion. ¹⁸ Additionally, the financial burden is often another significant concern, as one parent may need to sacrifice his/her job to provide care for their child. ¹⁹ Overall, these challenges contribute to a diminished quality of life for parents, who often neglect their own physical and psychological well-being while caring for their afflicted adolescent. ²⁰

Despite all the different and significant ways that parents are affected by their adolescent’s mental illness, there is currently a scarcity of research exploring the experiences of parent caregivers caring for adolescents with mental illnesses in Arab cultures, which possess distinct cultural contexts when compared to Western countries. Therefore, this study aimed to delve into the lived experiences of parent caregivers providing care for adolescents with mental illnesses. Hearing their voices is imperative not only for shaping their own caregiving experiences but also for influencing mental health policies and support systems in the region.

MATERIALS AND METHODS

An interpretative phenomenological analysis (IPA) study was undertaken to explore the lived experiences of Omani parents who parent adolescents with mental illness, from June 2021 to the end of December 2022. The choice of IPA as the research method stemmed from the scarcity of information pertaining to this specific subject.

To gain insights into the experiences of the lived experiences of parents of adolescents with mental illness, we conducted semi-structured interviews, which were audio-recorded to capture the participants’ narratives. The interviews were conducted by a trained female researcher. The researcher possessed prior experience in conducting interviews.

The interviews took place in private, comfortable, quiet, and well-suited rooms within Sultan Qaboos University hospital, Muscat, Oman, to ensure a convenient environment for open dialogue. Only the interviewer and participants were present during the interviews, and there was no pre-existing relationship between them. Each interview session had an approximate duration of 60 minutes.

A semi-structured interview format was chosen to maintain consistency in covering essential topic areas across all interviews while also allowing participants the freedom to discuss various aspects related to their child’s illness and share their personal experiences. Throughout the interviews, the researcher exhibited sensitivity, thoughtfulness, and empathy attuned to the participants’ vocal tones, facial expressions, gestures, and reactions. The process was adapted as needed, including incorporating short breaks when required. The researcher concluded each interview when it became evident that no further novel information was emerging. The data saturation was reached after 20 interviews.

Topic guides were developed for the interviews, drawing from existing literature and the researcher’s own experience. These guides were subjected to review by a panel of experts, encompassing both clinical and theoretical expertise. Examples of the interview questions are presented in Table 1.

The sampling technique employed was purposeful in nature. The researcher collaborated with the department healthcare providers to establish the inclusion criteria for potential participants. These criteria included being a parent for adolescent aged 15-19 years old, a parent of an adolescent diagnosed with a mental illness for a duration exceeding one year, as indicated by clinical records, the ability to comprehend, read, and write in the Arabic language, and willingness to participate in the current study. The research team assembled a group of parents who had prior experience in raising adolescents dealing with mental illness. These parents varied in terms of age, occupation, place of residence, educational background, family size, and the age of the adolescent receiving treatment for mental illness. Parents of adolescents with severe cognitive impairment that could affect their ability to provide meaningful insights into their experiences, and unwillingness to participate in the study after interview were excluded from the study. The healthcare providers identified individuals who met these criteria and approached them to explain the purpose and methodology of the study, seeking their agreement to participate. Twenty interviews were conducted, and data collection ceased once data saturation was achieved, indicating that no new information emerged.

The analysis adhered to the guidelines for phenomenological coding as outlined by Smith and Fieldsend. ²¹ Following each audio-recorded interview, the data were transferred to computer CDs to ensure optimal volume and sound quality. The analysis commenced once all the transcripts had been transcribed verbatim, with any leading or personally identifiable information removed from the transcripts prior to analysis. The researcher meticulously reviewed and perused the transcripts multiple times to gain a deep understanding of how the participants expressed their experiences. Each transcript underwent individual analysis, followed by a search for commonalities across the transcripts, as suggested by Smith and Fieldsend. ²¹ A line-by-line analysis was performed to identify and label statements, with overlapping statements being consolidated and removed. The analysis process involved the collaboration of two independent researchers, who collectively derived meaning from these statements. The meaningful statements were subjected to coding and categorization into subthemes, and from this compilation, overarching themes were identified and mutually agreed upon by the researchers.

This study employed multiple strategies to maintain rigor. Credibility was maintained by scrutinizing each transcript for commonalities and engaging in reflective discussions. Dependability and transferability were assured through an audit trail and a comprehensive report detailing the study processes. Confirmability was safeguarded as group of authors meticulously reviewed the participants’ quotes, themes, and sub-themes to validate the research findings. ²²

The study received the ethical approval from the Medical Research Ethics Committee (MREC), College of Medicine and Health Sciences, Sultan Qaboos University (REF. NO. SQU-EC/ 313/2020), and the participants provided informed consent to partake in the study after a comprehensive explanation of the study objectives and methodology. Participants were assured that their involvement was entirely voluntary, they had full right to withdraw from the study at any point, their treatment would remain unaffected, and any information they provided would be treated with utmost confidentiality. Additionally, participants were informed that if they experienced any distress or harm during the interview, the researcher would promptly stop the interview and notify the healthcare team.

RESULTS

A total of 20 parent caregivers took part in the study, with approximately 15 (70%) of them being females. The adolescents they were caring for had a variety of diagnoses, including depression, obsessive-compulsive disorder, neurological and nervous disorders, panic attacks, schizophrenia, bipolar disorder, intellectual disability, psychological trauma, aggression, anxiety, movement disorder, animal phobia, and Attention Deficit Hyperactivity Disorder (ADHD). Around 6 (30%) families represented in the study had a history of mental disorders. Most of the caregivers reported that they were living together (18=90%), while only two caregivers mentioned they were from divorced families. Participants were requested to evaluate their living situation using a Likert scale ranging from 1 (poor) to 5 (excellent). Notably, 3 (15%) rated their living situation as poor. For more information see Table 2.

Three main themes emerged from the current study: (1) emotional burden and guilt, (2) treatment concerns, and (3) fear of the future. Each of the mentioned themes contained subthemes (Table 3).

1. Emotional Burden and Guilt

The caregivers who participated in this study bore a heavy emotional burden, accompanied by feelings of guilt, as they had to deal with the signs and symptoms of their adolescents’ mental disorders. This overarching theme encompassed various emotional challenges faced by caregivers, including self-blame and a sense of being overwhelmed, all of which being tied to their roles as parents and caregivers.

1.a. Difficulty in Dealing with Signs and Symptoms of Mental Disorders

One of the main challenges faced by caregivers in this study was dealing with the often unpredictable and perplexing behaviors associated with mental disorders. Caregivers frequently expressed their frustration and confusion when confronted with these behaviors. This is exemplified by the words of a participant:

“...I would take her [my daughter] from one place to another, sometimes returning home in tears. I visited the doctor, expressing my exhaustion, not knowing what to do with her [my daughter], especially when she smiled or cried for extended periods, leaving me feeling helpless and unsure of how to help her.” (P8)

Caregivers struggled to provide the necessary support and interventions to address their adolescents’ mental health needs, further contributing to their emotional burden, as indicated by a mother:

“I wanted to understand how to handle her, when to be firm and when to give her space, and how to persuade her. These aspects were not addressed in her treatment, and I encountered this challenge with my daughter. I grappled with how to navigate her strong-willed personality and her insistence on her own opinions, particularly during her illness. How could I effectively engage with her and address her concerns?” (P16)

1.b. Blaming Themselves

Another significant facet of this emotional burden was the self-blame experienced by caregivers. Many caregivers carried a profound sense of guilt, believing they could have done more to prevent or treat their adolescents’ conditions. This self-blame intensified their emotional burden and had a detrimental impact on their overall mental state. Moreover, caregivers frequently experienced an enduring feeling of inadequacy, consistently believing that they fall short of what they should be doing for their adolescents. One mother recounted:

“...She uttered words that shook me to my core, ‘Mommy, I’m tired and I need help.’ In that moment, I felt like I had failed her, as if I hadn’t provided enough support. Her words pierced my heart, and I was overwhelmed by guilt and a pervasive sense of inadequacy...” (P1)

1.c. Feeling Overwhelmed

In addition, caregivers described feeling overwhelmed by the demands of their caregiving responsibilities. Caring for adolescents with mental disorders required them to navigate complex healthcare systems, seek appropriate treatment, and advocate for their child’s needs. The constant worry, stress, fear, uncertainty, and the weight of responsibility took a toll on their emotional well-being, leaving them feeling drained and inundated, as expressed by a mother:

“I cried profusely for him, consumed by worries about the possibility of my son losing his daily functioning and his future slipping away. His life deterioration left me overwhelmed and physically exhausted during his illness.” (P13)

2. Treatment Concerns

In this research, caregivers voiced substantial concerns regarding the treatment of their adolescents’ mental disorders. Two primary areas of concern emerged: lack access to psychotherapy services and apprehensions about the side effects of pharmacological treatments.

2.a. Lack of Access to Psychotherapy

The scarcity and challenging access to psychotherapy services emerged as a major source of frustration and disappointment among caregivers. The unavailability of psychotherapy options left the caregivers feeling powerless and obstructed their ability to offer comprehensive care for their adolescents’ mental health. For instance, one mother had to wait for a long time to secure an appointment for psychotherapy for her daughter, as she recounted, “We waited endlessly for them to schedule an appointment with the specialist, and the hospital did not offer enough psychotherapy sessions.” (P1)

2.b. Worries about Medication Side Effects and Its Long-term Reliance

Another significant concern expressed by caregivers revolved around the use of medication in the treatment of mental disorders. They harbored worries about the potential side effects and risk of long-term dependence on medication. Unfortunately, concerns regarding medication side effects frequently led to the discontinuation of medication by either the caregiver or the patient themselves, significantly undermining the overall treatment process. A mother shared her experience:

“When she commenced taking the medication, her irritability escalated noticeably on a daily basis, coupled with a sense of constant lethargy. After two weeks, my daughter refused to continue with the medication, saying to me, ‘Mom, I don’t need this medication. It only makes me more tired...’” (P11)

One of the main concerns raised by caregivers was the possibility of long-term dependency on drugs. They were concerned that their children might become reliant on treatment for a lengthy period of time, which could compromise their general well-being and quality of life. This concern was reported by several caregivers such as:

“The most important concern is whether my daughter will have to remain on medication for the rest of her life or if they can eventually be discontinued.” (P2)

Caregivers desired alternative treatment options that would minimize long-term reliance on medication and provide a more sustainable approach to managing their children’s mental health.

3. Fear of the Future

Caregivers in this study expressed significant fears and concerns related to the future outcomes of their adolescents’ mental disorders. Therefore, the third theme identified was the fear of the future. Two prominent aspects of these fears were fears about the impact on work life and academic success, and worries about the future, including seeking a suitable partner and marriage.

3.a. Worries about the Impact on Social/Work Life and Academic Success

Besides addressing the concerns of medical dependence, parents also expressed their concern that having a mental illness would affect the achievements in school and the social and professional lives of their adolescents. The primary reason for these worries was to ensure that they encounter difficulties during their youth due to the lack of lasting friendships, mid-life due to not getting along with people at work or school, as well as by failing to perform well academically in school due to their challenging experiences. This concern was reported by a father:

“…What worries me is the potential delay in his years of study. He should have already graduated from school and moved on to the university. His lack of friends is also of concern because his peers who were at his academic level have moved on to universities…” (P14)

3.b. Worries about the Future Relationships and Marriage

Furthermore, caregivers voiced worry about the future, particularly about marriage. Given the cultural setting in Oman, this was particularly pertinent for female patients. Caregivers were concerned that their adolescents’ mental disorders and ongoing treatment could potentially affect their chances to establish future relationships and get married. These concerns augmented the caregivers’ anxiety and uncertainties about their adolescents’ long-term well-being and overall happiness.

This concern was stated by several caregivers such as the mother who said:

“ …We are concerned about her future, especially if her chances of marriage become limited once her condition is known. This is particularly true if the matter becomes known within the family, as it may be seen as a precedent for her illness…” .(P14)

DISCUSSION

The findings of this study provide valuable insights into several significant themes related to the experiences and concerns of parent caregivers when dealing with adolescents’ mental health issues. These themes include emotional burden and guilt, treatment concerns, fear of the future, and the overall impact of these factors on the caregivers’ well-being.

The primary theme that emerged from the interviews was the substantial emotional burden and guilt experienced by parent caregivers while caring for adolescents with mental disorders. Caregivers expressed a wide range of complex emotions, including frustration, confusion, and helplessness when faced with the unpredictable behaviors and symptoms of mental disorders. This emotional burden is in the same line with previous research, highlighting the profound emotional impact of caregiving in the context of mental illness. ²³ The caregivers’ emotional burden was compounded by the overwhelming responsibilities involved in managing their adolescents’ mental health, navigating complex healthcare systems, and advocating for their adolescents’ needs. This aspect of their experience is consistent with the findings of a study which also noted a higher prevalence of burnout syndrome among caregivers of children with ADHD. ²⁴

Furthermore, the burden of self-blame and guilt among parent caregivers is a significant aspect of their emotional struggle. This guilt often stems from the belief that they could have done more to prevent or treat their child’s mental illness and can have a profound impact on their well-being. It can also introduce uncertainty into the parent-adolescent relationship, leading to self-sacrificing parenting practices where caregivers prioritize their child’s needs over their own, potentially jeopardizing their mental and emotional health. ^{8 , 17} Recognizing the emotional toll of guilt and the resulting stress levels and potential for burnout underscores the importance of addressing these challenges. Providing caregivers with support, education, and counseling can assist them in navigating these complex emotions while preserving the parent-child relationship and their personal well-being. In summary, understanding and addressing emotional barriers are essential to empower caregivers and ensure the best possible care for adolescents with mental disorders. ²⁵

The results of this study also highlighted treatment concerns as a prominent theme, emphasizing the difficulties parents face in obtaining appropriate care for their adolescents with mental illness. Access to psychotherapy services was a major source of frustration, with prolonged waiting times hindering timely interventions. This finding is consistent with previous studies which revealed significant challenges in accessing necessary and appropriate services for adolescents’ mental health needs. ^{8 , 23 , 26} Furthermore, caregivers expressed concerns about the use of medication in the treatment of mental disorders, citing potential adverse effects and the fear of long-term dependency. These concerns are well-documented in the literature and can lead to treatment discontinuation. ^{27 - 29} To ensure treatment adherence and success, healthcare providers and caregivers must address these issues through education and clear communication. A major concern is the risk of long-term medication reliance, which may impact the overall well-being and quality of life of individuals with mental illnesses. Providing parents with information about treatment alternatives and potential paths to recovery can help alleviate their anxiety. ²⁸

The findings of this study shed light on another important theme: fear and concern for the future of adolescents with mental disorders. This fear arises from caregivers’ long-standing worries about the future of their adolescents with mental illness. Caregivers often expressed fear regarding the impact of mental illness on their adolescents’ education and social lives. Concerns about delayed educational progress and limited social interactions are consistent with the findings of a study which highlighted the challenges faced by individuals with mental illness in academic and social settings. ³⁰ Supporting caregivers in addressing these concerns and connecting them with appropriate resources can be highly beneficial.

Fear of societal judgment played a crucial role in shaping these concerns, leading caregivers to be hesitant to disclose their child’s diagnosis and to conceal the condition. These concerns are in line with previous research conducted in similar cultural settings, emphasizing the significance of societal norms and the need to address mental health stigma. ^{23 , 31} In many cultural contexts, concerns about the potential impact of mental illness on future relationships and marriage are significant, particularly for female patients. This underscores the importance of cultural sensitivity in providing care and support for both patients and their caregivers. ^{23 , 26} These findings highlight the significance of promoting awareness, fostering understanding, and providing support to ensure equal opportunities for individuals with mental illnesses, regardless of gender, and to alleviate anxiety and concern about their prospects.

While the current study offers valuable insights, it is not without limitations. It relied exclusively on self-report data from caregivers, potentially introducing recall or social desirability biases. Future research could enhance reliability by incorporating diverse data sources such as clinicians’ assessments or interviews with the adolescents themselves. Additionally, gathering perspectives from educators, policymakers, and mental health professionals could provide a more comprehensive understanding of caregiver challenges and inform potential support systems. Despite these limitations, this study contributes significant knowledge about caregiver challenges in the context of adolescents’ mental health, emphasizing the importance of further research to inform tailored interventions and support services that enhance the well-being of both caregivers and adolescents.

CONCLUSION

This study underscores the critical importance of recognizing and addressing the challenges faced by caregivers of adolescents with mental disorders. This study holds crucial implications for practical application and future research in adolescents’ mental health. It emphasizes the pressing need to alleviate caregivers’ emotional burdens while providing essential support. Mental health professionals and healthcare providers should focus on educating caregivers about recognizing mental illness symptoms, teaching coping mechanisms, and promoting self-care. They should expand access to psychotherapy services and integrate them into standard treatment options to reduce overreliance on medication. Addressing the caregivers’ concerns about medication side effects and dependency through transparent communication is vital. Future research should delve deeper into the challenges faced by caregivers in different cultural contexts and explore the impact of caregiving on mental health. Longitudinal studies can offer insights into long-term consequences and the development of strategies to alleviate the caregivers’ burdens and social stigma.

ACKNOWLEDGEMENT

The author would like to thank the parents for their time and participation in the study.

Conflict of Interest:

None declared.

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