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 Table of Contents  
ORIGINAL ARTICLE
Year : 2021  |  Volume : 37  |  Issue : 4  |  Page : 423-429

Accessing mental health care among people with schizophrenia: Data from an Indian rural psychiatric setting


1 Center for Community Mental Health (CCMH), Mangalore, Karnataka, India
2 Young Indian Fellowship Program, Ashoka University, Haryana, India
3 Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, Karnataka, India
4 Department of Psychiatry, K.S. Hegde Medical Academy, Mangalore, Karnataka, India
5 Department of Psychiatry, Manipal University, Manipal, Karnataka, India
6 Department of Psychiatry, MIMER Medical College, Pune, Maharashtra, India
7 Nitte Rural Psychiatric Project, Mangalore, Karnataka, India

Date of Submission01-Jun-2020
Date of Decision07-Jul-2020
Date of Acceptance23-Jul-2020
Date of Web Publication25-Nov-2021

Correspondence Address:
Dr. Anish V Cherian
Associate Professor, Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, Karnataka 560 029
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijsp.ijsp_141_20

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  Abstract 


Background: “Duration of untreated psychosis” (DUP) remains a major predictor of poor outcome among people with schizophrenia (SCZ). Reducing DUP remains a challenging public health concern. Studies from various low- to middle-income countries demonstrate that many patients with SCZ remain untreated for long, especially in rural communities. However, there is paucity of data from rural India on DUP and pathways to care. Methodology: We consecutively recruited 106 patients registered at a rural psychiatric center in South India who met the International Classification of Disorders-10 criteria for SCZ. The delay from the onset of psychotic symptoms to seeking psychiatric help was measured and the pathways to care were assessed. Results: The patients were nearly equally distributed across the genders and were predominantly <40 years of age from rural and low- to middle-income backgrounds. The mean and median DUP were 3.15 ± 5.61 years and 1 year (interquartile range = 2.79), respectively. Although the longest time to contact was 28.5 years, 80% had DUP shorter than 5 years. Three major gateways to care were identified, with native/faith healers being the most popular (73.58%). Conclusion: In rural India, patients with SCZ tend to take longer to seek psychiatric help after their first psychotic episode compared to urban counterparts. Our results emphasize the necessity of developing early identification, improving mental health literacy, and providing community-based interventions for people with SCZ.

Keywords: Duration of untreated psychosis, pathways to care, rural psychiatric center, schizophrenia


How to cite this article:
Lukose A, Venkatesh RK, Cherian AV, Bhat SU, Prabhu S, Arahanthabailu P, Kumar S, Bhat A, Shetty NC. Accessing mental health care among people with schizophrenia: Data from an Indian rural psychiatric setting. Indian J Soc Psychiatry 2021;37:423-9

How to cite this URL:
Lukose A, Venkatesh RK, Cherian AV, Bhat SU, Prabhu S, Arahanthabailu P, Kumar S, Bhat A, Shetty NC. Accessing mental health care among people with schizophrenia: Data from an Indian rural psychiatric setting. Indian J Soc Psychiatry [serial online] 2021 [cited 2021 Dec 8];37:423-9. Available from: https://www.indjsp.org/text.asp?2021/37/4/423/331121




  Introduction Top


Duration of untreated psychosis (DUP) is defined as the time lag after the onset of a patient's first psychotic symptoms to his/her first contact with psychiatric care.[1] Research has consistently identified a longer DUP to positively correlate with a poorer treatment response and symptom control, more negative symptoms, cognitive deficits, and overall worse functional outcomes in patients with schizophrenia (SCZ).[2] In high-income countries where there are relatively better developed early identification systems for psychosis, the average DUP ranges from 1 to 1.4 years.[3] However, in low- and middle-income countries, health-care services are underdeveloped, and there are widespread infectious diseases, high rates of malnutrition, shorter life expectancies, higher levels of stigma, and high treatment costs. DUP in these countries is longer, ranging between 1.3 and 3.5 years.[3]

India is the second most populous country in the world with approximately 1.2 crore (12 million) individuals with serious mental disorders including SCZ.[4] The recent National Mental Health Survey estimates that the treatment gap for any mental disorder in India is as high as 83%.[5] Unlike other prognostic factors, DUP is modifiable through reduction of the treatment gap and improvement of the early identification system in the community.[6],[7] In a comparative study between three countries (Australia, Malaysia, and India), India had the longest DUP. India was also the only site where some patients had never accessed psychiatric care until the time of research.[8] The mean DUP reported from across India ranges, from 1.6 years in a tertiary care mental health hospital[9] to 10.6 years in a rural community outreach mental health service center.[10] The mean DUP reported from community psychiatric services was much higher compared to that of urban general hospitals,[10],[11],[12] state-level psychiatric hospitals,[13] or tertiary mental health centers.[14] A specialized early psychosis setting reported the least DUP (23 weeks), which was commensurate with the Canadian site.[15]

The worldwide estimate of the treatment gap in SCZ was as high as 32.2%; however, there is a lack of community-based data from developing countries.[16] A vast majority of Indians reside in the rural areas and treatment gap has been observed to be substantially higher here.[17],[18] The major reason for treatment delays leading to longer DUP in low-middle income countries (LMIC) is community misconception regarding mental health disorders,[12] prompting them to seek help at ineffective first points of contact.[12] In India, distribution of mental health facilities is skewed in favor of major cities. Hence, local faith healers (FHs) and nonqualified health providers often serve as the first point of mental health care.[19] This translates to protracted pathways to care and consequently, longer DUP. This has been confirmed by a meta-analysis in Africa.[20] Exploring the pathways to care and the sequence of contacts made by the family or patient in their efforts to seek help,[21] helps in detection and intervention at the point of delay. Subsequent to the World Health Organization (WHO) cross-cultural study on pathways to psychiatric care,[22] many studies have been conducted on the same globally.[23],[24],[25] However, most of the studies from India focused on common mental disorders[26],[27],[28] and were limited to urban general hospitals or psychiatric centers.[29] Only two studies from India have specifically focused on pathways to care among patients with psychosis including SCZ; these were also limited to tertiary care psychiatry centers or urban general hospitals.[19],[30] However, there is scarcity of literature focused on patients with SCZ from rural community settings. Our study was aimed at exploring DUP and pathways to psychiatric care in patients with SCZ availing the rural psychiatric services offered by the department of psychiatry to improve the understanding regarding treatment gap in rural SCZ patients and develop interventions to reduce it.


  Methodology Top


Setting

Nitte Rural psychiatric center is a community extension of Department of Psychiatry, K. S. Hegde Medical Academy, Mangalore. This center is around 60 km away from Mangalore town and caters to the needs of people of around 300,000, extending in six different taluks.

Participants

We recruited all newly registered outpatients with a primary diagnosis of SCZ according to the International Classification of Disorders-10 who attended the rural psychiatric services from January 2014 to April 2015, numbering a total of 106. A team of mental health professionals (MHPs) (psychiatrist, psychologist, psychiatric social worker, and psychiatric nurses) provides free mental health services every day on an outpatient basis in a rural village about 100 km away from the town. Medication as well as psycho-social care is given free of cost to all these patients by the institute. All patients were between 18 and 75 years of age and provided a written informed consent. Those with comorbid psychiatric diagnoses, including substance use disorders (except nicotine), organic brain disorders, and mental retardation, were excluded from the study. Ethical Clearance was obtained from the local Ethics Committee to conduct the study.

Assessments

Sociodemographic details including age, gender, education level, marital status, locality, family type, and economic status and clinical details such as age at onset, total duration of illness, family history, and DUP of the patients were collected through interviews with patients and caregivers.

Details regarding pathways to care and DUP were collected using the WHO Encounter Form developed for the Pioneering Pathways to Care Cross-Cultural Study,[22] which had centers in Karnataka, India, also. This form has been used in multiple other studies in developing countries,[31],[32],[33] including India.[29],[30],[34] DUP was defined as the number of years from manifestation of the first psychotic symptom to initiation of antipsychotic drug treatment by a psychiatrist. Pathway to care was defined as the path that a patient traverses during his/her referral process to a MHP.

The symptom dimensions and their severity, disability caused by illness, and insight of patients were also evaluated using the Positive and Negative Syndrome Scale (PANSS),[35] Indian Disability Evaluation and Assessment Scale, and Insight scale,[36] respectively. All the assessments were carried out by a trained research assistant. Further, diagnostic and other clinical features including the severity ratings were confirmed by the consultant psychiatrists during their clinical evaluations. The psychiatrists involved in PANSS rating received the training before initiating the study.

Analysis

The data were tabulated and analyzed using the Statistical Package for Social Sciences (SPSS) version 15 (SPSS Inc., Chicago, IL, USA). Descriptive statistics pertaining to sociodemographic and clinical variables including DUP were computed as frequencies with percentages and means with standard deviations (SD). As in previous studies, the routes taken by the participants were compiled into a “pathway diagram.”[29],[34]


  Results Top


Characteristics of the sample is described in [Table 1]
Table 1: Sociodemographic distribution of the patients studied (n=106)

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The patients were nearly equally distributed across the genders and were predominantly <40 years of age (65.1%), although their age ranged from 19 to 74 years. More than half of the patients had achieved only high school education and 13.2% had received no formal education. Nearly half of the patients were married, a third were single, and the remaining were separated or widowed. The sample was from rural background, predominantly living in nuclear families, following Hindu faith, and had low incomes (<Rs. 5000/71.81 USD per month).

Clinical characteristics [Table 2]
Table 2: Clinical characteristics and primary gateways to care

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The clinical characteristics and first contact in the gateway to care are detailed in [Table 2]. Most patients had onset of illness in their late twenties. Although the mean DUP was 3.15 years (SD = 5.61), the median value was 1 year (interquartile range = 2.79). Eighty percentage of the patients had DUP of <5 years. The earliest psychiatry consultation was 15 days after the onset of symptoms, and the longest recorded DUP was 28.5 years.

Pathways to care before current consultation

Nearly three quarters of the sample had first approached a native/religious healer when symptoms occurred. [Table 3] shows the distribution of the sequential visits to various portals. Eighty-two patients (77.3%) either visited a psychiatrist or reached out to Nitte in their second visit.
Table 3: Distribution of patients according to their choice of previous contact

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[Figure 1], [Figure 2], [Figure 3], [Figure 4] are the pictorial representations of each gateway to care. The Medical Practitioner gateway [Figure 2] describes the path followed by patients whose first point of contact was a general practitioner (GP) or physician (n = 10, 9.43%) before they reached Nitte. After their first visit, only one revisited a FH. Six visited other psychiatrists (one had multiple visits to the psychiatrist) before reaching Nitte. Three patients reached Nitte directly after consulting the GP/physician. The patient who had visited the FH came to Nitte at the subsequent visit.
Figure 1: Description of legends

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Figure 2: Medical practitioner gateway

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Figure 3: Mental health gateway

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Figure 4: Native/faith healer gateway

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The Mental Health gateway [Figure 3] portrays the path followed by patients whose first point of contact was a psychiatrist (either public or private) (n = 18, 16.98%). One of them subsequently visited a GP/physician and another a FH before reaching Nitte. Another visited the FH also, while continuing to consult the psychiatrist after the initial psychiatry consultation, before eventually reaching Nitte. Seven patients consulted the psychiatrist alone, multiple times before reaching Nitte, while eight others came to Nitte for their second consultation.

The native/FH gateway [Figure 4] describes the path taken by patients whose first point of contact was an FH (n = 78, 73.58%). Ten patients reached Nitte directly after a single FH visit. One visited a psychiatrist as well as a FH before reaching Nitte. Forty-six of the remaining 76 patients consulted a psychiatrist at the second visit and 20 of these patients reached Nitte after visiting the psychiatrist (3rd visit). Of the remaining 26 patients, 23 visited a psychiatrist multiple times before eventually coming to Nitte, while 3 others visited a GP before reaching Nitte at their 4th visit. Of the 16 patients who went to a GP at the 2nd visit, 8 went on to consult a psychiatrist before coming to Nitte. Of the remaining eight patients, seven came to Nitte at their 3rd visit, while one consulted the GP multiple times before eventually coming to Nitte. Five patients visited the FH multiple times; 4 of them subsequently visited a GP before arriving at Nitte. One visited a psychiatrist followed by a GP and then reached Nitte. These five patients had taken the longest path in the overall sample to reach Nitte.


  Discussion Top


We explored the DUP and pathways to care among patients with SCZ who sought treatment at the rural psychiatric outreach center of the department of psychiatry. The earlier studies on this topic from India were predominantly from general hospitals or tertiary mental health centers.[10],[14] Ours was a homogenous sample with residence in rural areas, having monthly family incomes below Rs. 5000, with the patient not contributing financially to the family income. This provides a better sketch on the existing pathways to care and treatment gap in rural India to aid policy decisions that could address the scarcity of mental health awareness and facilities, affecting the choice of help seeking including faith healing.

The mean DUP in our sample (3.15 years) is much higher than what has been reported in earlier studies from India. This includes those from urban, educated patients in general hospitals – 40–10 months;[10],[11] rural, educated patients in urban hospitals – 1.25 years;[12] and a national-level tertiary mental health-care center – 1.73 years.[14] Although the urban patients were better educated, had higher incomes, and had better access to treatment facilities, there was no significant difference in DUP between rural and urban patients.[37] However, in those recruited through rural community mental health outreach programs, the mean DUP was as high as 10.7 years.[38] It appears that, unlike the rural population that accesses treatment at urban general hospitals or tertiary care centers, in the core rural community, majority have inadequate mental health awareness and access to care, and, hence, longer DUP. Our findings are comparable to those of an influential meta-analysis (mean DUP of 3.0 years) from low-income countries including India.[3] This study did not find DUP to be related to the type of first contact, sociodemographic factors, or clinical factors. This can be explained using the deeply rooted socio-cultural explanation about the cause of “abnormality” and thereby help-seeking behavior. The socio-cultural network determines perceptions of etiology, help-seeking practices, attitudes, and stigma; this could reduce or prolong DUP.[7]

Much of Indian research on pathways to psychiatric care in India is based on general psychiatric disorders in hospital populations.[27],[29],[34],[39] The proportion in which psychiatrists were the first point of contact varied from as high as 74% in Kerala[40] to as low as 9.29% in central India.[29]

We identified the three major gateways for seeking help: (a) FHs were the first choice of contact among a huge majority of patients (73.5%) followed by (b) psychiatrists (16.98%) and (c) GP or physician (9.43%). Multiple studies mirror these findings with high reliance on FHs as the primary contact for help seeking,[19],[41] and attribution of magico-religious beliefs to the psychotic symptoms,[42] except in metropolitan cities.[43] In high-income countries, either primary care physicians or MHPs were the primary points of contact for mental illnesses.[44],[45],[46] However, in India, FHs were the primary contact for help seeking,[34] irrespective of whether they were residing in urban or rural areas.[19] Other developing countries in Asia and Africa show a similar trend, with FHs in Cambodia (56.7%)[47] and Malaysia (61.7%),[48] traditional healers in Saudi Arabia (60%),[1] and Nigeria (69%)[49] being the first contacts for a majority of those with psychosis seeking help. It has been observed that FHs/local religious practitioners are more preferred by the patients for resolving their psychotic symptoms than nonpsychotic symptoms.[41] Cultural and societal acceptance of a supernatural model for psychosis, easy accessibility, and lower expenditures in FHs, combined with the lack of trained MHPs in the community, could be the reasons for this. Qualitative studies on the socio-cultural influence on people's perception and choice on help-seeking behavior for psychosis show that, albeit recognizing the abnormality in behavior, the culturally acceptable explanation about its etiology and help-seeking revolves around faith-healing concepts.[50]

We found that a majority (77.3%) either consulted psychiatrists or approached Nitte for their second visit. Only two patients visited an FH after consulting psychiatrists/GP. Albeit reaching out to FHs, possibly due to cultural beliefs and customary attitudes, most patients have approached appropriate mental/medical health-care facilities subsequently.

Developed countries have guidelines and policies formulated for early identification and intervention of first-episode psychosis.[51] The Goldberg and Huxley's model[52],[53] focuses on “gatekeepers” in the pathways. This works well in developed countries where the hierarchical system of care is well established, and individual private practitioners or GPs act as gatekeepers to the psychiatric service.[54] However, in developing countries, data on pathways to care in psychosis from all sectors are unavailable.[41],[49],[55] Our findings support the evidence from Asian and African countries suggesting that caregivers approach multiple service providers, predominantly FHs before reaching MHPs.[20],[31] An exhaustive cross-sector study of the gateways to care in India is important in policy-level recommendations for early identification and intervention. The WHO Mental Health Action Plan 2013–2020[56] recommends the inclusion of traditional and FHs as a resource for early identification (Mental Health Global Action Programme Intervention Guide [mhGAP-IG]),[57] through dialog between them and clinicians. This has been already recorded in the management of depression.[58] The widespread acceptability of traditional, complementary, and alternative medicine practices among patients with mental illnesses, highlights the significance of establishing collaboration between these informal care providers and MHPs and conducting community-based outreach programs by MHPs from both public and private sectors[59] in order to reduce the immensity of the treatment gap observed in our study.

Limitations and further research

This is in effect, a pilot study, focused on a prototype rural sector, that needs to be replicated in geographically and culturally distinct regions with more comprehensive sampling and larger sample sizes. As in any pathway study, retrospective recall bias needs to be taken into account in the present study. Owing to nonavailable/unreliable information regarding the time frames of symptom onset and initial psychiatry consultation, the sample size for DUP estimation was smaller (n = 83). Community-based door-to-door studies could provide more in-depth understanding. Further exploration is warranted regarding mental health literacy, community perception, economic constraints, and other possible gateways in psychosis.


  Conclusion Top


This preliminary study on the pathways to psychiatry care among rural patients with psychosis through a community outreach program, uncovers the magnitude of treatment gap in the rural sectors of a low-resource country. FHs/local practitioners are often the first gateway to care, supporting the WHO mhGAP-IG[57] recommendation to train nonspecialists including traditional and FHs, as potential referral points to reduce the treatment gap in low-resource countries.

Acknowledgment

The authors would like to thank Ms. Divya, Mr. Hariprasad and other staff at the rural psychiatry Center.

Financial support and sponsorship

The study was funded through the Nitte University Seed Grant for Early Career Faculties, 2014–2017, PI: Dr. Anish V. Cherian

Conflicts of interest

There are no conflicts of interest.



 
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