Validation of the EDSS for ASHAs.

More than 50 different profiles were entered in the ASHA EDSS and the ability of the EDSS to identify screen positive cases correctly based on the algorithm developed for this study, was matched with the paper-based PHQ9 and GAD7 tools. A perfect match was obtained.

Validation of the EDSS for PHC doctors.

Once developed the tool was populated with 20 mock patient profiles by another researcher and the diagnoses made by it was compared against the original mhGAP-IG independently by a psychiatrist, for validation. There was perfect agreement between the mobile based EDSS and the paper based mhGAP-IG guidelines. This version was tested in the field.

Field testing and evaluation of the EDSS using mixed methods.

Four ASHAs and one PHC doctor from the PHC associated with the three villages chosen for this study were included. Both the ASHAs and the doctor were initially trained about mental health symptoms and its management, and the EDSS that they would use. Besides training on pharmacotherapy, the doctor was also provided training on simple psychological therapies that involved talking to the individual about stress, treatment adherence, social support, and need for engagement in activities. The ASHAs were trained for one week using a training manual and the doctors were provided an intensive 2 hour training and presentation using the mhGAP-IG tool. Before handing over the EDSS, both ASHAs and doctor were provided additional booster training on how to navigate the tools and all their doubts were clarified. This occurred about 2–3 weeks later.

Each ASHA was asked to screen 20 individuals and refer those who screened positive to the PHC doctor. They were advised to screen in an opportunistic manner and combine it with their routine home visits. Additionally, they were also advised to use their spare time whenever possible. The PHC doctor used the mobile based mhGAP-IG application to diagnose referred individuals and provide appropriate treatment. Screen positive individuals visited the PHC outpatient clinic on a particular day and time of the week as indicated by the doctor. This allowed the doctor to devote more time to these patients, without affecting the routine clinical commitments. The work of both the ASHAs and the doctor were monitored by the research staff, and their time was financially compensated at the rates provided by the government.

Quantitative data was collected by using a mobile–based questionnaire used by ASHAs that also had PHQ9 and GAD7 [10, 12] embedded within it. Data about service usage was tracked by gathering such information from the field by following up on individuals who had been screened positive and were asked to visit the PHC doctor and supplementing it with information gathered from the data obtained through the EDSS. The questionnaire provided details about the population screened, e.g., age, gender, depression and anxiety symptoms, total depression and anxiety scores, whether a person qualified as screen positive for CMD. Analytics from the EDSS allowed us to identify the number of individuals screened by each ASHA, number of screenings done on a particular day by a particular ASHA (which helped in monitoring the activities of ASHAs), number of screen positive individuals e who visited the PHC doctor, final confirmed diagnosis as per the doctor’s EDSS, and the appropriateness of the treatment provided.

Qualitative data provided additional information about the usability of the applications (S1 Table). Open ended questions with additional probes to clarify any particular issues were used. One focus group discussion (FGD) was done for the ASHAs and a semi-structured interview was conducted with the doctor. Information was obtained about their experiences in using the EDSS, including facilitators and barriers during its implementation. Suggestions for improvement of the EDSS per se, or specific aspects related to the processes involved in implementing the intervention in the community were also enquired. Additionally, field notes and observations made by field investigators were used to supplement the information.

Focus Group Discussions (FGD) and in-depth interviews (IDI).

This part of the research mainly focused on gathering information about the knowledge and attitude of the community, ASHAs, and the PHC doctor about mental health and mental health services. It was conducted in 2 villages.

Altogether four FGDs were conducted- two with male and one with female members of the community and one FGD with the ASHAs. An IDI was conducted with the PHC doctor. Purposive sampling was used for the recruitment of participants from the community to ensure participation of both genders, as women generally avoid attending such meetings in villages.

Two team members—one moderator and one note-taker—conducted the FGDs and IDI. The moderator explained the purpose and procedure of the FGDs and IDI to the participants, and the note-taker was responsible for audio-taping the discussions and taking notes during interviews.

The FGDs and IDI were conducted in the local language, Telugu, at a scheduled time and place, as per the convenience of the participants and at a venue within the community. The confidentiality of responses was assured.

The FGDs and IDI were done using interview guidelines which comprised of open-ended questions and prompts. The questions were translated from English to Telugu. The questions were asked to elicit participants’ responses about knowledge related to mental disorders and their treatment; about their practices or beliefs related to culturally relevant methods to treat mental disorders; about their opinion on social inclusion of people with mental disorders and suggestions about how to increase mental health knowledge and reduce stigma against mental illness in the community.

The IDI involving the doctor focused on different kinds of mental disorders seen by the doctor in the community, stigma, types of treatment available, use of traditional faith healers as mental health service providers by the community, importance of increasing mental health awareness in the community and best way to deliver mental health care in the community.

Data management and analyses.

All quantitative data from the EDSS were automatically uploaded into secure electronic data bases from where de-identified data was downloaded to conduct the analyses. Descriptive analyses was undertaken to provide an understanding about the ability of both the ASHA and doctor EDSS to identify screen positive individuals and diagnose them clinically. Some socio-demographic correlates were also analyzed. STATA 13 [15] was used for the analyses.

The qualitative interviews were digitally recorded. The tapes were first transcribed to Telugu and then translated to English. The research team familiarized with the response by going through the data repeatedly. During the familiarization process, broad thematic areas were identified and a coding scheme was formulated using an inductive approach. All transcripts were reviewed by three researchers (SK, AT, SD) to identify recurrent themes across individuals and groups, which were then refined into codes, using an inductive method. Next, two researchers (SK, AT), working together, defined each code category and then individually proceeded to code the text of the interviews and FGD data. This ensured reliability and reduced bias. Discrepancies in coding were discussed and a consensus was reached. Interviews and focus groups were analyzed separately using NVIVO 9. Thematic analysis based on an analytic framework [16, 17] was used. No systematic difference was observed among the FGDs and interviews so the data was pooled together for analysis.

Quantitative analysis.

A total of 77 community members were screened by ASHAs (Male– 50.7%, Mean age (SD)– 35.2 years (12.7), Range 18–72 years). Twelve (15.6%) were found to be screen positive and were referred to the doctor, 7 of whom were women. Compared to the age of those who did not need a referral to doctor (Mean 33.3 years, SD 1.3 years), those who needed referral, were significantly older (Mean 45.9 years, SD 5.0 years, p < .001). Nineteen (24.7%) had scored ≥5 on either the PHQ9/GAD7, suggestive of depression. Moderate to severe depression (≥10 on PHQ9/GAD7) was identified in 11.7% of the screened population. Five out of the twelve persons who were referred to the doctor actually visited the doctor. One of them was found to have depression with psychotic features and was referred to a psychiatrist.

Qualitative analyses.

During the FGD, the ASHAs mentioned that they felt empowered to talk to the community members about mental health with the new skills. They reported that the community also was more willing to discuss their mental health symptoms with them as they were asking more mental health specific questions. They were satisfied with the training and support provided by the institute. They mentioned that initially they required more support from the research staff in using the tool, but later they were comfortable.

They cited that the two main reasons for people not visiting the doctor were distance of the PHC from their homes, and old age which prevented them from traveling long distances. Additionally they felt that it would be difficult to do the intervention effectively during harvest season as both ASHAs and many villagers work as seasonal labourers in the fields during harvest. Overall, they felt that the project would have definite benefits for the community.

During the semi-structured interview with the PHC doctor, no major issues with the EDSS were identified. The doctor felt that the training received was useful and had helped him to use the tool quite effectively. However, he mentioned that the length of the mhGAP-IG was too long and that may be an issue in the clinic. He also observed that many elderly people complain of ‘a wish to be dead’–a culturally relevant style of expressing their frustrations related to their physical or social problems, due to age-related factors, which is not a true reflection of the severity of their depressed mood. Hence a low threshold for identifying suicidal risk may lead to increased number of false positive cases. The role played by the research team to coordinate the referral of screen-positive individuals to the PHC doctor was also mentioned. The need to ensure some system to facilitate continuity of care between ASHAs and PHC doctors was stressed by the doctor. Absence of medications, like anti-depressants, to treat people with CMD, hence the need to refer all such cases to the next level of care, was identified as a potential barrier to accessing care at PHCs by the doctor. The need to update the EDSS application regularly was also indicated as a potential challenge to deliver care smoothly.

Additionally field notes written by the field investigators also corroborated some of the points by indicated by ASHAs. They also mentioned that it was difficult to motivate people to go to see the doctor due to distances, and lack of time, as often their regular farm-related work overlapped the timing of the PHC clinic. Given many of them were daily wage earners, missing work was not an option for most, especially the men. The notes also indicated that the field investigators had to play a crucial role to ensure that screen positive individuals visit the PHC doctor by acting as facilitators in the whole process of linking the individual with the doctor.

Community-based qualitative research to gather information about perceptions of the community towards mental health.

A total of 25 community members (17 male; 8 female; age 20–70 years) and 6 ASHAs (females aged 35–46 years) participated in the FGDs. The participants were illiterate or had primary and secondary school level education. Most of the male participants worked as farmers or labourers working in the fields with additional jobs as small storekeepers, or other small businesses. A few had government jobs. Most of the female participants were housewives or engaged as teachers or health workers. In almost all the discussion the village heads were also present.

Each FGD took approximately 45 minutes and the IDI lasted for 30–35 minutes. The results of both the FGDs and IDI are presented below under major themes, and a summary is presented under S2 Table.

1. Perception about mental health and mental disorders.

In general, the community members perceived that people with mental disorder are not able to do their regular activities properly. According to them mental disorders are due to personal or situational problems. Some participants felt that any kind of stress, pressure or tension leads to mental disorders, whereas others felt that this is due to loss of immediate family members or close friends. One of the participants indicated, “There are many people with tension due to loss in business or somebody’s death in the family” (35 years old male participant).

Some participants thought that financial crisis or loss in business are the cause of mental disorders. One female participant was particularly concerned about pregnant women. According to her, pregnant women get anxious because of the fear of childbirth or procedures to be adopted for delivery, such as Caesarian section or normal delivery, and this worry leads to symptoms of mental disorders.

Most participants remarked on the connection between mental health problems and excessive consumption of alcohol. Most people believed that excessive drinking and drunkenness were associated with interpersonal quarrels and domestic violence. One participant mentioned, “Alcohol consumption is the root cause for mental disorder and all other problems” (45 years old male participant).

ASHA’s opined that often young married women suffer humiliation due to arguments /violence with husband and mother-in-law, which leads to mental disorders—“Young married women suffer from problems in marital relations resulting in mental disorder” (34 years old ASHA).

Few respondents were able to describe someone who had mental disorder. One community member said, “We do not observe anyone particularly as we are engaged in our daily work.” (72 years old male participant).

Most of the participants felt that mental disorder was a major health problem and it ruined many lives. Some participants who were able to indicate the signs/ symptoms in detail. They felt that people with mental disorder want to be left alone.

Some other participants mentioned that people considered mental disorder as a form of paranormal or supernatural form of activity. One participant said, “By seeing these symptoms our people think that it is the effect of ghost or some spirit” (48 years old female participant).

The IDI with the doctor identified daily stress, economic hassles, and loneliness amongst the elderly as some of the causative factors for mental disorders. The doctor was able to differentiate between CMD and severe mental disorders.

2. Lack of awareness about treatment facilities.

Service related issues were mentioned by several participants, notably within the context of a desire to seek treatment in the community settings. Most of the participants were not aware about the treatment options and indicated that no medicines are available for people suffering from mental disorders. One participant indicated, “There is medicine for all illness except mental disorder” (52 years old male participant).

A majority of the participants felt that services are not available locally and it is difficult to consult a psychiatrist at the district level hospital—“In our locality there are no facilities for mental health problem, we have only one PHC where they treat fever and other physical problem” (43 years old male participant).

3. Community beliefs and practices.

Faith healers and traditional health practitioners were generally well accepted and their roles appreciated by the community people. The majority of the participants thought that irrespective of religion everyone believes in traditional healers /faith healers for treatment of mental disorders. ASHA’s mentioned that if any person suffers from a mental disorder, the first step is to take the person to a faith healer where they are given amulets /thread and other various items, and only if there is no improvement will visiting a doctor or hospital for treatment be considered.

During the IDI, the doctor mentioned that villagers think that traditional healers play an important role in treating people with mental disorders due to cultural beliefs and often such is a shared practice based on the experience of one person who had used such services.

4. Attitude towards people with mental disorders.

Most of the participants shared the view that people were not concerned about persons with mental disorders. An adult male participant said, “We are not interested in observing people with mental health problems” (65 years old male participant).They also felt that often they are looked down upon or abused, harmed physically and neglected, even by family members and relatives. Often people make jokes and tease them. A respondent mentioned, “the problem is usually people don’t help who need such help; in fact they will ridicule and throw stones at such people but genuinely nobody will help people” (45 years old male participant). Most of the time they are neglected by the family and friends. There were few participants who felt that if a person suffered from mental disorders, their relatives were more interested about usurping the property of that person rather than helping the ill person.

The doctor identified stigma and lack of awareness about mental health in the community as a major issue.

5. Suggestions from the participants.

All participants unanimously suggested creating awareness about mental disorders among community members, so that people suffering from such disorders can get support and treatment in time. One participant suggested forming a committee where female members can easily reach out and register their complaints for domestic violence, for example, if it was the causal factor for mental health problems.

Both community members and ASHAs suggested various methods to create awareness, including creating social networks, and group meetings to educate community members. They also suggested that doctors from government hospitals, celebrities, and other educated people should be involved in the awareness campaign as people in the community respect such persons, especially if it includes a doctor. Another suggestion was to organize door-to-door campaigns for those who cannot share their problem in public and need personal attention. They felt that all such meetings should be organized in each locality so that more people from across the community can attend them and gain knowledge. An important feedback was not to conduct the meetings near the village administrative (panchayat) office, as it did not provide enough privacy for everyone to express their opinions due to differences in socio-economic status, further the distances of such offices from their homes can prevent people from attending.

The doctor suggested that the mental health awareness campaigns are needed and should involve volunteers, religious persons, teachers, local leaders and health professionals from local clinics.