Exploring barriers to seek mental health services among patients with severe mental illness and their caregivers in a modified assertive community treatment program: A qualitative thematic analysis

Abstract

Background:

Affordability, lack of public mental healthcare facilities, inadequate insurance coverage, and stigma and discrimination are barriers to mental healthcare utilization in India. There is limited research on these barriers and the factors influencing the use of mental health services.

Aim:

To explore the barriers to seeking mental healthcare for individuals with severe mental illness and their caregivers in a modified assertive community treatment program.

Methods:

In a qualitative study using a descriptive thematic analysis, we conducted in-depth interviews with 19 adults, including seven individuals with severe mental illness and twelve caregivers. All the participants had been in the modified assertive community treatment program for at least two years. Using thematic analysis, we identified and grouped codes into subthemes and then clustered into themes.

Results:

Three major themes on barriers to seeking mental health services emerged: service-related factors, societal-related factors, and illness-related factors. Service-related factors included affordability, accessibility and geographical disparity, and noncoverage under insurance schemes. Societal-related factors included social stigma and discrimination, lack of mental health service knowledge and seeking other forms of treatment, and poor social support. Illness-related factors included poor insight into the illness and no relief from the symptoms despite medication.

Conclusions:

Barriers to seeking mental healthcare can be categorized as service-related, societal-related, and illness-related. Identifying these factors will improve mental health service delivery.

INTRODUCTION

“I will remain hearing my voices…. rather than society….”

According to the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2017 estimates, mental disorders constitute a significant disease burden.[1] They are the second leading cause of years lived with disability (YLDs) and the sixth leading cause of disability-adjusted life-years (DALYs) worldwide.[1] Nearly 80% of individuals with mental disorders live in low- and middle-income countries (LMIC), contributing to 10% of the total disease burden.[2] However, 90% of healthcare resources are concentrated in high-income countries, and up to three-quarters of individuals with mental illness in LMIC receive no treatment.[2,3] Consequently, mental healthcare has become a key priority in global health policies and is integral to the Sustainable Development Goals set by the United Nations. Significant barriers to accessing mental healthcare include limited availability and affordability of facilities, inadequate healthcare strategies, and pervasive stigma and discrimination.[4,5,6,7,8]

India’s federal system, where health is primarily a state responsibility, presents a unique challenge in delivering mental healthcare due to its sociocultural and demographic diversity. According to GBD estimates, one in seven individuals in India is affected by a mental disorder, ranging from mild to severe.[9] Only 10% of those with severe mental disorders receive evidence-based treatment.[10] Moreover, there is just one psychiatrist for every 333,000 people, with most concentrated in urban areas.[11] This lack of integration of mental healthcare into primary health services and the scarcity of specialized resources have created an alarming treatment gap.[11] Despite data on the prevalence and burden of mental disorders, research on the utilization of mental healthcare and barriers to seeking care in India is limited. Such research is essential for designing effective strategies that address India’s sociocultural and demographic diversity.[9] Various governmental initiatives, including the National Mental Health Program (1982), the District Mental Health Program (1996), the National Mental Health Policy (2014), and the revision of the Mental Health Care Act (2017), aim to provide affordable and universal mental healthcare. However, these efforts face challenges like poor implementation of services and a persistently high treatment gap.[12]

Attitudinal barriers to seeking mental health services are common in high-income countries.[13,14] In contrast, structural and social barriers such as lack of awareness, low priority for mental disorders, accessibility and affordability issues, treatment gaps, insufficient mental healthcare strategies, lack of education about mental disorders, negative attitudes toward people with mental illness, and stigma are prevalent in lower- and middle-income countries.[4,6,7,8,15,16,17,18,19] Additionally, a preference for traditional and faith healers over mental health professionals is a significant barrier.[20,21] In India, barriers to mental healthcare utilization include affordability, lack of public facilities, inadequate insurance coverage, and persistent stigma and discrimination.[22,23,24] There is limited systematic research on these barriers and the factors influencing utilization. This study aims to explore the barriers to seeking mental healthcare for individuals with severe mental illness and their caregivers.

METHODS

Study design

This qualitative study was conducted at the Department of Psychiatry, Kasturba Medical College, Manipal, in south India. Using a descriptive thematic analysis approach, it explored barriers to seeking mental health services through in-depth interviews with patients having severe mental illnesses and their caregivers. Analyzing these data helps researchers understand these barriers better and work toward improving access to mental health services. The study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist[25] to ensure comprehensive reporting.

Participants

The researchers conducted in-depth interviews with 19 participants in Udupi, India, from 10 January to 25 March, 2022. The sample included seven individuals with severe mental illness and twelve caregivers. Among the caregivers, there were five females and seven males, while the patients included two females and five males. Interviews were conducted in the participants’ preferred languages: Tulu (local language), Kannada (State language), or English. Caregivers were eligible if they were 18 years or older and had been key caregivers for at least two years. Patients were eligible if they were over 18 and diagnosed with schizophrenia or schizophrenia spectrum disorders. All participants had been using the Manipal version of Assertive Community Treatment (M-ACT) for at least two years. This M-ACT program is a modification of Assertive Community Treatment, aims to prevent hospitalizations, and improves the quality of life for individuals with severe mental illness.[26] This program is run by a private medical college as part of community extension services and also helps in training of postgraduates of the department. The services and functions of the M-ACT program are detailed in a previous study.[26] Participants who could not express their viewpoints and experiences were excluded. An a priori sample size calculation was not adopted, as the study’s design was emergent.

Data collection

A semistructured interview guide [Supplementary Table 1] was prepared and refined based on feedback from pilot interviews with three patients with severe mental illness from a psychiatric rehabilitation center. Based on thematic analysis framework, face-to-face interviews were conducted using this interview guide. The participants were encouraged to express and articulate the challenges and barriers to seeking mental health services. The interviews were conducted by two experienced researchers, PA and RY, both fluent in the local language. PA is a faculty member in psychiatric social work, trained in qualitative research, while RY is a psychiatric nursing faculty member and qualitative research expert, serving as a master trainer for qualitative research studies. Interviews were held in participants’ homes, ensuring a comfortable and distraction-free environment. Responses were recorded verbatim using a Sony-IC recorder (Sony, Tokyo, Japan), a portable digital recording and playing device. Each interview lasted about an hour, providing in-depth exploration and rich qualitative data.

Supplementary table 1:

Interview guide for participants

SI. No	Questions
1	What are the mental health needs of your relative (Person with mental illness)? What are your mental health needs?
2	Can you tell us common mental health services around your place?
3	Are there any challenges in those mental health services?
4	What are your common challenges as a caretaker/ PWMI?
5	How are your experiences as a caretaker/ PWMI?
6	Do you have anything to say?

The rigor of the study

Lincoln and Guba’s trustworthiness criteria were used to establish this study’s rigor, focusing on credibility, transferability, dependability, and confirmability.[27,28] To enhance credibility, we conducted peer scrutiny of the patient data and sought participant feedback on the findings. Participants confirmed that the findings accurately reflected their experiences. To foster reflexivity and minimize potential biases, the interviewers maintained a diary to record their thoughts, reflections, and any biases that might have influenced their interactions during the interviews.

Data analysis

Three qualitative experts conducted thematic analysis on the obtained data. Along with RY, the team included SG, a faculty member in occupational therapy, and RA, a faculty member in psychiatry. Both SG and RA are trained in qualitative research and have prior experience in the field. The researchers listened to audio data using headphones and transcribed the interview data. Codes were generated manually using Excel sheets and Microsoft Word. The researchers carefully read and reread the data to familiarize themselves with the material and get a sense of the whole. Codes were identified and grouped into subthemes based on their shared concept, which were then clustered into themes based on their relationships.

Ethical considerations

The study obtained approval from the Institutional Ethics Committee, Kasturba Medical College and Kasturba Hospital, Manipal. Following the committee’s guidelines, participants were informed about the study and gave written informed consent for the interviews. Researchers visited participants at their home for the interviews. To ensure confidentiality, participants were identified using codes instead of names.

RESULTS

Participant characteristics

The study involved 19 participants: seven individuals with severe mental illness [Table 1] and twelve caregivers [Table 2]. Among the patients, five were male and two were female. Most patients were middle-aged, unmarried, unemployed, from nuclear families, and had a rural background. Two participants had mental illness for over 35 years. All patients were on medication and in stable condition.

Table 1:

Patient characteristics

Number	Gender	Age	Education	Marital Status	Occupation	Economic Status	Family Type	Domicile	Diagnosis	Duration of Illness
PT-01	Male	58	Lower primary school	Single	Daily wage worker	Lower socioeconomic status	Living alone	Rural	Schizophrenia	35 years
PT-02	Male	39	Master’s degree	Single	Unemployed	Lower middle socioeconomic status	Nuclear family	Suburban	Schizophrenia	16 years
PT-03	Male	37	Bachelor’s degree	Single	Unemployed	Lower middle socioeconomic status	Nuclear family	Rural	Schizophrenia	12 years
PT-04	Male	60	Bachelor’s degree	Single	Unemployed	Lower socioeconomic status	Living alone	Rural	Schizophrenia	35 years
PT-05	Female	37	Higher primary school	Single	Unemployed	Lower socioeconomic status	Nuclear family	Rural	Schizophrenia	16 years
PT-06	Female	55	Std 10	Widow	Homemaker	Lower socioeconomic status	Nuclear family	Rural	Schizophrenia	9 years
PT-07	Male	40	Std 12	single	Unemployed	Lower middle socioeconomic status	Nuclear family	Urban	Schizophrenia	7 years

Table 2:

Caregiver characteristics

Number	Gender	Age	Marital Status	Economic Status	Family Type	Domicile	Duration of caring
CG-1	Female	53	Married	Lower socioeconomic status	Nuclear family	Rural	35 years
CG-2	Male	72	Married	Lower middle socioeconomic status	Nuclear family	Suburban	16 years
CG-3	Male	47	Married	Lower socioeconomic status	Nuclear family	Suburban	25 years
CG-4	Male	33	Single	Lower middle socioeconomic status	Nuclear family	Urban	7 years
CG-5	Male	69	Married	Middle socioeconomic status	Nuclear family	Rural	12 years
CG-6	Female	54	Widow	Lower socioeconomic status	Nuclear family	Rural	8 years
CG-7	Male	44	Married	Lower middle socioeconomic status	Nuclear family	Urban	9 years
CG-8	Female	49	Married	Lower socioeconomic status	Nuclear family	Rural	8 years
CG-9	Male	29	Single	Lower socioeconomic status	Nuclear family	Rural	9 year
CG-10	Female	60	Widow	Lower socioeconomic status	Nuclear family	Rural	18 years
CG-11	Male	56	Married	Lower socioeconomic status	Nuclear family	Rural	35 years
CG-12	Female	54	Married	Lower socioeconomic status	Nuclear family	Rural	16 years

Among the 12 caregivers, seven were female. Most were married and over 40 years old, belonged to nuclear families, and came from lower socio-demographic backgrounds. Eight caregivers were from rural areas. Seven had been caring for their relatives with mental illness for over ten years, and two were responsible for caring for two patients with severe mental illness at home.

Major themes

The findings revealed three major themes as barriers to seeking mental health services: 1) service-related factors, 2) societal-related factors, and 3) illness-related factors [Table 3]. The primary themes are introduced first, followed by their respective subthemes, each illustrated with quotations from the participants, presented in italics. Subthemes are also displayed in italics to differentiate them from the main themes.

Table 3:

Major themes and subthemes

Themes	Subthemes
Service-related factors	• Affordability • Accessibility and geographical disparity • Non-coverage under insurance schemes
Societal-related factors	• Social stigma and discrimination • Lack of mental health service knowledge and seeking other forms of treatment • Poor support system
Illness-related factors	• Poor insight • No relief from the symptoms despite being on medication

Service-related factors

Under the theme of service-related factors, the researchers identified three main barriers: a) affordability, b) accessibility and geographical disparity, and c) noncoverage under insurance schemes.

Affordability: Participants expressed concerns about affording mental health services. The cost of psychiatric treatment or medications was perceived as a significant barrier. One caregiver stated:

“.very much problems (with regards to finance). I find it very difficult when it comes to money. my husband does not have a proper job, my daughter is also studying, needs money, needs food, needs money for medication and visits doctor… no idea when my son will become alright and all (crying).” (CG-10)

Furthermore, a caregiver emphasized the added financial constraints by stating:

“…. there are lot of expenses to treat these people… once admitted in the hospital, someone should stay with him, tablets are prescribed and other expenses also will be there…” (CG-9)

“… we need to make financial arrangements for his treatment and admissions… siblings said they cannot contribute… we are also having financial problems… with difficulties we are only taking care of his expenses, apart from us no one is there to look after him.” (CG-1)

Indeed, individuals receiving treatment need to cover expenses not only for inpatient care or medications but also for their stay in the ward as caretakers and loss of earnings due to staying with patients in the hospital.

Accessibility and geographical disparity: Participants viewed accessibility to mental health services as a significant obstacle to service utilization. Most patients and their caregivers (n = 11) expressed concerns about accessibility, particularly the need to travel to urban areas for psychiatric treatment. A patient with mental illness said:

“We do not have services around… I have to go to the city. along with me, my brother will come and take a whole day for psychiatric consultation….” (PT-6)

When further asked about the barriers they faced, a mother of a young patient with mental illness shared her personal experience of challenges associated with seeking help, stating,

“…. we do not have services here…I have to go by bus. I have to leave all my work and take him, he (patient) does not get ready by himself…I need to prompt him for everything.” (CG-6)

It was found that almost all mental health services were limited to urban areas, which were far from the participants’ residences. Additional challenges included inadequate transportation facilities, patient’s uncooperativeness, and loss of wages for family members accompanying the patients.

Noncoverage of mental disorders under insurance schemes: Surprisingly, some participants from the caregiver group shared their views on the disparity in the inclusion of mental illness under insurance schemes. They noted that mental disorders are not typically covered by insurance companies, placing the financial burden squarely on the participants’ shoulders, which could lead to delays in seeking treatment. According to one caregiver,

“We need to pay because we do not have any Medicare (Private health insurance) facility… for their psychological problems there is no insurance also…it will be problems for poor people to come for treatments.” (CG-11)

A caregiver of two patients with severe mental illness highlighted,

“Spending money on treatment is an inevitability. Medicines are expensive.no government schemes or other insurance facilities for these patients…we have private Medicare, and it is expensive….” (CG-3)

While the family may be willing to seek psychiatric help for their ward, the lack of available insurance packages can hinder their ability to assess psychiatric services.

Societal-related factors

Various societal-related factors emerged during data analysis: a) social stigma and discrimination, b) lack of mental health service knowledge and seeking other forms of treatment, and c) poor social support. These subthemes were identified as common challenges in seeking mental healthcare.

Social stigma and discrimination: Social stigma associated with mental illness was recognized as a significant barrier to seeking help. Several participants from both groups identified higher levels of social stigma toward mental illness and its negative effect on the willingness to seek psychiatric treatment.

A middle-aged caregiver lamented,

“…if the family is taken a patient to the psychiatric hospital, people think he is mad… they (society) call him mad.it is challenging take him hospital because of this… If one family member has a mental illness, people will look at the family from a different angle….” (CG1)

Furthermore, a lady from the caregiver group shared her painful experience of stigma and discrimination by stating,

“…relatives never invite us anywhere. if I say I will come with you for any program they leave us and go… they will say if he comes (person with mental illness), then they cannot take me… because of him they are not taking me….” (CG-6)

Participants also described how social stigma and social exclusion led to feelings of isolation and deterred them from participating in family and social events. A graduate participant with mental illness said,

“they (society and relatives) discriminate me… they move away from me if we meet in any functions…I stopped going out because of these.” (PT-2)

As a result of social stigma and discrimination or the consequences thereof, many individuals with mental illness and their caregivers are often hesitant to seek psychiatric help. A mother of the mentally ill clearly said,

“…she would say no treatment required and she will remain like that only by talking to herself because her worry was others will talk about her and say mad.” (CG-12)

Lack of mental health service knowledge and seeking other forms of treatment: Poor knowledge about mental disorders is widely recognized as a substantial barrier to accessing mental health services. Many participants, particularly caregivers, expressed concerns about limited understanding of mental health services, including where to seek help and the availability of treatment options. One caregiver stated,

“…people are not aware of the availability of psychiatric facilities to treat mentally ill…” Further, he added, “…they will go for other type treatment…like… dosha…pooja…visit to faith healers or religious places…” (CG-4)

The utilization of any service can be influenced by an individual’s sociocultural background. Based on the experiences shared by participants in this study, a primary barrier to seeking mental health services is the preference for magico-religious treatments for mental illness. Faith healing or religious methods of treatment are prevalent in every community and widely accepted. Accessing these faith healers is relatively easy within their community, and there is typically no associated social stigma.

Poor support system: Formal or informal support plays a crucial role in facilitating mental health services, particularly during emergencies. Participants identified a significant barrier in the form of lack of familial or social support. A participant from the caregiver population expressed,

“If family support is not available, and also if no one is available to bring the patient to the hospital…and that will be a major setback to take help.” (CG-4)

“See, I’m alone at home… I need to manage everything… no relatives or villagers will come for help… he has problems related to heart and mental illness… do you think I can take him to town (treatment center) easily?” (CG-6)

Dealing with chronic mental illness alongside comorbid medical conditions places a substantial burden on the caregivers, leading to significant distress. They may require additional support from others to seek psychiatric services for their loved ones.

Illness-related factors

The study also identified a theme related to illness-related factors. The subthemes under this were a) poor insight into the illness and b) no relief from the symptoms despite being on medication.

Poor insight: Awareness about one’s own health is crucial for seeking healthcare services. A lack of or inadequate knowledge regarding mental illness is a barrier to utilizing mental health services. A patient with good insight about their condition expressed,

“…they (patients with mental illness) are not ready to accept that they have a disease…” (PT-2)

Another caregiver reported problems are associated with a lack of awareness about the illness and taking the person for treatment. She stated,

“The problem with him is, he is not aware of what was going on… he will start abusing and start throwing stones if we talk about a hospital visit…” (CG-1)

Several of the caregivers (n = 6) mentioned poor insight as a barrier to seeking mental health services. According to them, patients are likely to refuse treatment because they do not recognize or acknowledge their psychiatric symptoms.

No relief from the symptoms despite being on medication: In certain cases, especially chronic and severe mental illnesses, individuals may continue to experience ongoing symptoms despite adhering to psychiatric medications. A caregiver shared,

“…and they are the same after getting discharged from the hospital… So, people may not come if there is no improvement with drugs…” (CG-3)

Patients and their caregivers often expect to achieve an optimal level of clinical recovery rather than merely controlling a few symptoms, particularly among the treatment-resistant patients. If symptoms persist despite treatment, they may be less inclined to engage with mental health services.

DISCUSSION

We explored the barriers to seek mental health services among patients with severe mental illness and their caregivers. Our study is the first conducted among users of a modified assertive community treatment program in the Indian context. Three major themes on barriers to seeking mental health services emerged: 1) service-related factors, 2) societal-related factors, and 3) illness-related factors. The present findings align with subthemes identified in the previous studies by Roberts et al.[14] and von Gaudecker et al.[29]

The results highlighted that affordability, accessibility and geographical disparity, and lack of coverage under health insurance schemes were significant barriers to seeking mental health services among the study participants. The cost of treatment has consistently been a factor influencing the accessibility of mental health care, as noted in several studies.[5,30,31,32] A review by Christensen et al.[33] suggests that developing cost-effective interventions could potentially alleviate the financial burden on individuals and improve access to mental health services.

Our findings suggest that the nonaccessibility of mental health services is a significant barrier, which aligns with many previous studies where inaccessible mental health services have been a recurring concern.[3,34,35,36,37] Many of our study participants, especially those from rural backgrounds, voiced concerns about the unavailability of mental health services in rural areas. This underscores the need for more research on barriers to treatment-seeking among rural populations.[29] Additionally, Roberts et al.[14] proposed extending services to underserved or rural areas through mechanisms such as increased remuneration or incentivizing practice. To reach these underserved populations, various public and private sectors community extension programs are operational across the country.[26,38,39,40,41]

Our participants have expressed concerns about the lack of coverage for mental illness under insurance schemes as a barrier to seeking help, similar to previous research by Chen and Vargas-Bustamante[42] and Martinez et al.[43] In the context of insurance options for individuals with mental illness in India, several companies have started incorporating mental illness coverage in their schemes following the directives of the Insurance Regulatory and Development Authority of India (IRDAI) and the Mental Health Care Act 2017. Additionally, the government of India has introduced the Ayushman Bharat scheme, which includes mental illness in its program to provide cashless coverage for secondary and tertiary care hospitalization in selected hospitals, covering 40% of the Indian population.[44]

The negative attitudes toward mental disorders, particularly social stigma and discrimination, pose substantial barriers to accessing and utilizing mental health services, as expressed by most of our study participants. This finding is consistent with multiple previous studies that have highlighted the role of stigma in influencing help-seeking behavior among individuals with mental illness.[29,45,46,47,48] Additionally, Corrigan[49] has explained how public stigma, self-stigma, and structural stigma influence help-seeking behavior among people.

Our finding indicates that a lack of knowledge about mental health services is a significant barrier to help-seeking behavior, consistent with prior research.[15,16,18,29,50] A longitudinal study by Bonabi et al.[51] highlighted the pivotal role of knowledge about mental health services in seeking such services. Similarly, our findings regarding the inclination to seek alternative forms of treatment echo previous studies.[52,53,54]

Seeking help from faith healers is a common practice in the Indian context.[55] Furthermore, patients and their caregivers often seek mental health treatment while concurrently engaging in religious and magico-religious rituals, a practice is known as “dual help seeking.”[56] Families may place a greater trust in faith healers and other traditional healers who are part of their community. These practices have deep historical roots and have existed long before the advent of modern psychiatry, contributing to their acceptability among individuals who share the same magico-religious belief systems.[29,57]

Collaborating with key stakeholders beyond patients and families, such as community leaders, religious leaders, and peer support groups, can effectively direct individuals toward mental health services.[29] Some studies have shown positive outcomes with interventions that integrate faith and traditional healing alongside the medical treatment model.[58,59,60,61]

People with mental illness require support to recover, and their social support network frequently acts as a catalyst for seeking help.[62,63,64] Similar to these findings, our study participants identified inadequate support as a barrier to mental health treatment.

Unwillingness to seek psychiatric treatment due to poor insight among people with mental illness was viewed as a barrier to seeking help by our study participants. Insight, the ability to recognize one’s illness, plays a key role in determining their willingness to seek and adhere to treatment. Poor insight can lead to delayed help-seeking, increased risk of nonadherence to treatments, and poorer community functioning.[65,66,67,68]

Participants in our study also shared that lack of improvement in clinical symptoms despite medication could discourage seeking psychiatric help. Research indicates that individuals with mental health issues are more likely to seek professional care if they have positive experiences or recommendations from others who have sought similar help.[69,70,71,72]

Strengths and limitations

The primary strength of the study lies in its qualitative research design, which enabled participants to share their unique perspectives on help-seeking behavior. The study rigorously adhered to qualitative research standards throughout participant recruitment, ensuring diverse representation from both patient and caregiver populations, encompassing individuals from rural and urban areas with varying levels of education.

However, this study has several limitations. While it focused on assessing barriers to seeking help, there are multiple other factors that can influence patients and their families when considering mental health services. Additionally, participants in this study were part of a specific mental health service, M-ACT, so their experiences may differ from those in other settings. Another limitation is the lack of involvement of care providers in the study, who may have unique insights into barriers to care. Furthermore, participants were invited to participate by their treating team, which may have influenced their willingness to share their experiences. Additionally, this study only included participants who were actively seeking mental health care. The barriers faced by those who did not seek any mental health services may be different.

CONCLUSIONS

Multiple factors contribute to the barriers faced by mental health service utilizers when seeking help. Our study identified service-related, societal-related, and illness-related factors as major obstacles. Effective utilization of mental health services can be achieved by expanding extension services such as telepsychiatry, improving mental health literacy, and engaging other health professionals and stakeholders within the community.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.