A Qualitative Analysis of Patients’ Experiences during their Pathway to Psychiatric Care

INTRODUCTION

Mental illnesses are commonly linked with a high burden of disease. The National Mental Health Survey¹ conducted in India found that the overall prevalence of mental morbidity was 10.6% with a lifetime prevalence of 13.7%. The pathways to care are the routes whereby people with mental disorders gain access to providers of mental health services.² This consists of a detailed and systematic description of sources of care used by the patients before seeking help from metal health professionals (MHPs) and also of the factors that modify it.³ Only a limited proportion of patients with psychiatric disorders attend the mental healthcare facilities, and it is only when the condition becomes severe.⁴ Many patients are treated inadequately, which delays their presentation of illness and they become chronically ill, which depletes their resources.⁵

This is of special interest in India because of the shortage of access to trained MHPs and unique cultural diversity. Pathways to care in mental illnesses are more complicated and prolonged than other illnesses. Analyzing the pathway of care helps us to understand the health service utilization, recognizing reasons for the delay in reaching appropriate systems, and to strategically plan solutions.⁵

Culture exceptionally influences the mental health of people living in a society. India is a country with an amalgamation of vivid varieties of cultures and religious beliefs. Mental health problems, from the onset of illness to course and outcome, at every phase can be influenced by cultural beliefs. In India, blind beliefs and faith in the supernatural etiology of mental illness are highly prevalent among the majority of the population, especially in rural and tribal areas.⁶ Traditional healing has a long and significant history in India.⁷ In the Indian health system, mainly in rural India and partly in urban India, the first line of contact for any illness including mental illness is comprised of local healthcare providers, a majority of them are traditional healers (THs).⁸

In India, patients with mental illness are stigmatized invariably. Visiting the THs is less stigmatizing than visiting MHPs. The reasons given by patients for visiting THs according to Naik et al.⁹ were (1) prior encouraging results with faith-healing in self and others; (2) causality was alleged to be supernatural, which needed a religious healer rather than a doctor; and (3) as the symptoms are not seen as physical problems, a medical doctor was not considered. Also, these THs have high acceptability and accessibility as they are part of their local communities.²

Even though quantitative methods are the commonly used research methods, they may not be able to answer a few rare or unexplored phenomena related to human behavior. Qualitative studies can enhance our understanding of human behavior and health services. They provide a basic understanding of complex situations, which cannot be explained by quantitative methods.¹⁰ The use of qualitative methods is central to make progressive research in healthcare.¹¹ This study was designed to understand the patients’ experiences during the pathway to psychiatric care through qualitative research using a thematic analysis. Thematic analysis is a technique for classifying, analyzing, and recording patterns or themes within data.¹²

MATERIALS AND METHODS

This hospital-based study was conducted to collect retrospective information from patients and their caretakers on their care-seeking pathways that lead them to the Department of Psychiatry of PIMS, Puducherry. After obtaining Institutional Ethical Clearance and written informed consent, 150 adult patients accompanied by primary caregivers attending the Department of Psychiatry for the first time in the 2 months (July and August 2018) period were selected through purposive sampling. Adult patients accompanied by caregivers who cannot reasonably participate in the research were excluded. Those who fulfill the inclusion criteria were interviewed using the proforma and the WHO encounter form.¹³

Patients who had more than two encounters were invited to participate in the qualitative interview. The current qualitative study aimed to elicit and gather perspectives in a subset of patients with mental illness and or their primary caretakers and understand their subjective experiences during their pathway to psychiatric care. The participants were encouraged to elaborate on the encounters they had, the path taken by them, and the experiences they had during their journey from the onset of illness until they reach our Department of Psychiatry. In those patients who were severely symptomatic, interviews were conducted only with the primary caretakers. Totally, 18 participants accepted to participate within the timeframe. A semi-structured guided interview format was used to gather their narratives. Interviews, which lasted between 45 minutes and 60 minutes, were transcribed and translated from audio recordings. The interviews were originally conducted in Tamil and took place in a separate room in the Psychiatric Outpatient Department of PIMS, ensuring safety, confidentiality, and privacy. To ensure participant validation, at the end of the interview, the summary of the interviews was read back to the participants.

RESULTS

Table 1 depicts the details of the participants.

Even though 18 interviews were conducted, data reached theoretical saturation after analyzing 15 interviews.

Four major themes were extracted, which were further analyzed for subthemes.

• Clinical presentation and their understanding
• Encounters
• Expenditure during their pathway
• Remarks made by the patient/caregiver

SUMMARY OF QUALITATIVE RESULTS

Flowchart 1 explains the themes related to their pathway and Flowchart 2 about their encounters.

DISCUSSION

Most of the cultural practices are reiterated from the themes and subthemes found in the study. Patients with mental illness are taken for help only when they have severe symptoms such as harm to self or others. Their understanding of mental illnesses and attributions typically reflected cultural beliefs. Only one person acknowledged that this could be a mental illness.

Treatment initiatives were taken by others most of the time. The encounters with magicoreligious treatment posed a unique challenge due to overlapping terms such as Pujari, Samiyar, and Saadhu. Each has differences in their practices. According to Trivedi and Jilani,³ common factors that are associated with seeking help from THs are:

• Previous successful exposure to faith healing,
• Faith in supernatural healing may run in families,
• Monetary constraints,
• The apprehension of social stigma in being labeled,
• Easy accessibility of faith healers,
• Failure of medical care,
• Influence of neighbors and friends, and
• Lower socioeconomic status.

Though most of these factors apply to our patients as well, the financial aspects need special consideration. Though we could not make an appropriate estimate of the cost, patients had spent more on natural healing pathways than with allopathic/alternative care. Borrowing and pledging jewels, etc., which are unhealthy ways of handling finances, managed the financial needs.

The explanations and remedies given by the native healers are similar to the one found by Schoonover et al.⁷ and Kurihara et al.¹⁴ They attributed it to the evil forces and tried to nullify it by doing various rituals. Sometimes, violent and horrific methods were used. They have hit, verbally abused, pulled hair and made them drink blood. Also, the list of objects they had to purchase to do the rituals varied from five to thirty-five. Most (10/15) of them had asked for alcohol. Some remedies were very expensive such as changing the house. Doing rituals in the graveyard and growing yagna were also common practices as a remedy. Many patients have visited multiple faith healers and obliged to their instructions piously. A similar scenario was found in Bali as well.¹⁴ However, the same patients did not take the medications as advised. This may be related to the factor of fear or reverence associated with the THs. Schoonover et al.⁷ found that people consider them next to God. But the respect they had for doctors is visibly decreasing.

The encounter with a psychiatrist or medical practitioner was less frequent in this subgroup. Surprisingly, one of the medical practitioners had tried to normalize the mood symptoms probably causing a delay in seeking further care. This awakens us to the reality of other practitioner’s knowledge about mental illness. Whenever they have met a psychiatrist, the standard of care was followed.

Even though we had not asked, one of the subthemes that was identified, the final remark they made about the TH. Most of the patients had developed a negative attitude toward the magico-religious healing practices. This may be due to the bitter experiences they had or failure to relieve symptoms. Few of them regretted spending a huge amount of money.

World Health Organization has already mentioned that these alternate pathways may hinder access to mental health services because of low awareness of available services, insufficient connections between services, a dearth of knowledge among rural populations about the causes of and treatments for mental disorders resulting in the underutilization of mental health services, insufficient mental health training of general practitioners and THs adding to low rates of detection, treatment, and referral of mental disorders in traditional and primary care settings, and so on. These hurdles frequently lead to undesirable outcomes, such as delays in pursuing care until full-blown disorders have established with a higher probability of unfavorable long-term outcomes and huger expenses of treatment.

In a country like India where cultural relativism is very important, we do agree that we have to respect the cultural explanatory model given by the patients,⁸ but WHO² also has recognized that some of the traditional healing practices were associated with the human rights violation, as seen in our study participants. In our study also, we found that patients with serious conditions such as delirium tremens were considered to be possessed and taken to temple, which could have been life-threatening. Hence, cultural relativism cannot be preserved at the cost of the safety of the patient.

Bathla et al.¹⁵ has suggested that attempts should be made in every region to drive these godmen away from our society and to create knowledge about mental illnesses. In our view, we cannot completely remove the traditional healing system from the pathway, as it has become part of the collective subconscious of our culture¹⁵ and ingrained in our society for centuries. The community may not accept such measures. Rather, gaining their trust and working closely with THs would give us a better opportunity to gain acceptance from the community and modify certain harmful practices they have been performing.¹⁶

The Dawa-Dua model of Erwadi village of Tamil Nadu has paved a way forward for such efforts. Even though this village became popular after the tragic fire accidents of mentally ill persons in 2001, the religious leaders in Erwadi opened up to the idea of combining medical treatment with traditional healing. And in 2014, Erwadi Dargah incorporated a clinic run by the district mental health program within its campus and started offering its visitors access to professional psychiatric care, diagnosis, treatment, and medication. Patients were encouraged to continue their prayers alongside professional medical treatment and return for follow-up visits to improve their well-being.¹⁷ Other religious places popularly known for mental health remedies should also be incorporated in such a plan.

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