Continuity of Care for Persons With Serious Mental Illness in a Rural Rehabilitation Program During the COVID-19 Pandemic in India

Over the past 5 years, a collaboration of the National Institute of Mental Health and Neurosciences with the state government and nongovernmental organizations (NGOs) has run a CBR program in Jagaluru, an economically disadvantaged rural taluk (subdistrict) in Karnataka, a state in southern India (4).

Our team runs biweekly in-person mental health clinics in 10 primary health centers (PHCs), one PHC subcenter, and one taluk hospital. The CBR program works closely with various stakeholders, including government health staff, district mental health program (DMHP) staff, taluk health officers, PHC medical officers, pharmacists, nurses, auxiliary nurse midwives, and lay health workers (i.e., accredited social health activists [ASHAs]). Our work involves identifying persons with mental illness and initiation and continuation of mental health treatment (4).

Apart from providing free psychotropic medications, the program also offers home visits for those in need, telephonic reminders before the scheduled clinic visits, facilitation of disability certification, and welfare benefits. Because families are primary caregivers for nearly all persons with mental illness, periodic residential camps are conducted for families to educate them about their rights and various government programs for persons living with mental illness. In addition, a family federation serving persons with mental illness conducts monthly meetings.

So far, >800 persons with mental health issues have benefited from the program, and >300 persons with mental illness receive regular follow-up. At the beginning of the pandemic, 169 persons with serious mental illness residing in Jagaluru had follow-up. Nearly all of these persons live below the poverty line. Persons with serious mental illness are accompanied by their family, an ASHA, or both; assessed in person; and given free medications during each follow-up visit. Currently, we are studying in a randomized controlled trial (RCT) funded by the Indian Council for Medical Research whether ASHA-delivered CBR is more effective than treatment as usual in reducing disability associated with serious mental illness (4).

The abrupt announcement by the Indian government of a lockdown in March 2020 to contain the COVID-19 pandemic made both local and long-distance travel very challenging. For instance, the psychiatrist in state headquarters based in Bengaluru could no longer travel the 300 kilometers to Jagaluru. Persons with mental illness and their families who relied on public transport could not attend scheduled clinic visits, and the case records and stock of psychotropic medications were stuck with our NGO partner in Davangere (i.e., district headquarters).

As workers at the front lines of COVID-19, the ASHAs are involved in identifying COVID-19 cases, contact tracing, and ensuring COVID-19 vaccination of eligible people. Because ASHAs were engaged in COVID-19–related activities, we could not involve them in activities envisioned in the ongoing RCT of the CBR for persons with serious mental illness (4).

Most donor organizations began diverting funds for COVID-19–related expenditures (5), affecting our NGO partner’s funding for disability sector–related activities. Its workforce was reduced, which affected activities of the CBR program. We also discontinued home visits to families of persons with mental illness and residential family camps because of COVID-19–related restrictions. The family federation for persons with mental illness could not meet monthly as planned during the lockdown. Moreover, because the government system was overwhelmed by pandemic-related disruptions, persons with mental illness and their families faced significant challenges in pursuing disability certification and welfare benefits. The CBR program adapted to these COVID-19–related challenges by prioritizing uninterrupted medical care for persons with mental illness over other rehabilitation interventions.

We maintain a database of the contact details of all persons with mental illness in the taluk. All known persons with mental illness have the contact details of the project staff who coordinates the CBR activities in the taluk. Nearly all family members of persons with mental illness residing in Jagaluru have a mobile phone. In rare instances where the family does not have a mobile phone, we contact a relative, neighbor, ASHA, or another person with mental illness from the same village with the consent of the person with mental illness for reminders about scheduled clinic visits. In lieu of home visits, we started regular telephone contacts with persons with mental illness to provide reassurance, check for symptoms, identify early signs of relapse, facilitate referrals if necessary, and offer telephonic reminders before a scheduled clinic visit.

The rapport and collaborative spirit built among CBR program staff over the past 5 years helped us in coordinating required clinic visits for patients during the first- and second-wave pandemic lockdowns. Although the ASHAs could not be involved in rehabilitation activities as part of the research project, they helped ensure continued medical care for persons with mental illness in their villages.

A PHC medical officer (who traveled from district headquarters to his PHC) had a vehicle pass to travel during the lockdowns and helped us transport case files and medications from an NGO partner to the clinics. He also permitted project staff to use the vehicle for local transport to other PHCs. The government health system and the DMHP team helped us with obtaining psychotropic medications. The NGO partner that provided monthly psychotropic medications ensured that medications reached us on time for delivery to the clinics, and research project funds helped us purchase additional medications during shortfalls.

As a further response to the lockdowns, and enabled by good Internet connectivity in our rural area, our program shifted from in-person to telepsychiatry consultations coordinated by the project staff through Skype video calls from the PHC and the taluk hospital. Besides teleconsultations, we dispensed medications and referred patients to the PHC medical officers for health issues that required in-person care. All COVID-19 precautions, including social distancing, were followed during the scheduled clinic visits.

Families of persons with mental illness accepted teleconsultations because it ensured follow-up care by a familiar treating psychiatrist. The telepsychiatry consultations were conducted in accordance with India’s telemedicine practice (6) and telepsychiatry operational (7) guidelines.

Telemedicine Practice Guidelines (6) clauses 4.1–4.3 permit consultations of a registered medical practitioner with a patient, caregiver, or health worker. The guidelines define a health worker as a “nurse, allied health professional, mid-level health provider, auxiliary nurse midwife, or other health worker designated by an appropriate authority.” Using these clauses, we involved the ASHAs and family caregivers to provide telemedicine consultations during the lockdowns when public transport to the clinic was unavailable for persons with mental illness and family.

The ASHAs readily agreed to the initiative and were reimbursed with 150 Indian rupees (approximately US$2) per visit with a person with serious mental illness. They obtained consent for the teleconsultation from the persons with mental illness, received updates from them on their clinical status (i.e., medication adherence, symptom status, and any problems they had), and brought the follow-up treatment records to the clinic. Because public transport was unavailable, the ASHAs traveled to the PHC on motorcycles owned by their own family or by families of the persons with mental illness.

Our team reviewed the treatment follow-up records and obtained updates on patients’ clinical status during caregiver and ASHA consultations. If the patient was doing well on maintenance care, we wrote a prescription and sent it to the project staff through WhatsApp. Medications were dispensed from the hospital for 3-month prescription fills. The ASHAs collected the medications and delivered them to the patients. Because most persons with mental illness were symptomatically stable on regular treatment, only 10 (including five persons with serious mental illness) required DMHP psychiatrist referral for an in-person assessment.

In the aforementioned RCT, the control group of ASHAs was not planned to be part of activities to assist patients (4). However, because many persons with mental illness could not use services during the pandemic lockdowns, we needed to deviate from the RCT protocol and use control group ASHA services to ensure continuity of care for persons with mental illness. We reimbursed these ASHAs for their help as described above.

Many families who had migrated to urban areas for work lost their jobs and returned to their villages during the pandemic lockdowns (6). Many poor people’s livelihoods depended on daily wages and were therefore significantly affected by the pandemic, and many had to depend on government support to meet their basic needs. The NGO partner delivered ration kits—funded by philanthropic organizations and containing food grains, cooking oil, salt, sugar, soap, detergent, toothpaste, handwashing lotion, and sanitizer—to the poorest persons with mental illness (85 in the first wave and 90 in the second wave) during the lockdowns.

Table 1 depicts the clinical status of persons with serious mental illness as of June 2021 and shows a breakdown of teleconsultations offered during the first- and second-wave pandemic lockdowns. We could ensure continuity of care for >80% of persons with serious mental illness under our follow-up protocol during the lockdowns. Most persons with serious mental illness who did not attend the consultations scheduled during the first lockdown were followed up either during our follow-up clinic visits or with the DMHP team for treatment within the next 3 months. Some had stopped medications because they had no discomfort or symptoms and did not see the need to continue treatment. In our experience, these patients will consult us when symptoms recur.

During the first-wave lockdown, we facilitated only ASHA-initiated teleconsultations because persons with mental illness could not reach PHCs on foot or by motorcycle or public transport because of the strict travel restrictions. During the second-wave lockdown, the travel restrictions were less stringent, and persons with mental illness could reach PHCs by walking or using private vehicles. ASHA-initiated consultations were primarily for persons with mental illness who could not reach the PHC by public transport.

In India, the health and livelihood of residents in rural areas were affected more by the second wave of the COVID-19 pandemic than by the first wave (8), and a greater number of COVID-19 cases were observed in rural Jagaluru. Because a few COVID-19 cases were reported in a PHC, we asked patients and caregivers not to attend the clinic and instead facilitated ASHA-initiated consultations at the request of the PHC medical officer so that clinic visits did not increase the risk for community transmission.

Despite some challenges, continuity of care of persons with mental illness was feasible in the rural region of Jagaluru. The rapport and collaboration among various stakeholders (including lay health workers from the government sector and resources from NGOs) in the CBR program built over the years ensured that care was available when needed.

We note that lay health workers can be involved in mental health service delivery and should be incentivized by reimbursing them for their efforts. We believe that the incentivization of ASHAs helped ensure continuity of care for persons with mental illness during the lockdowns. There is a need to systematically study the cost-effectiveness of such a strategy and to scale up such initiatives (9).

Mobile technology and free-to-use technology platforms made telepsychiatry feasible in the rural areas studied and can facilitate access to expert care for persons with mental illness. There is a need, however, to bridge the digital divide (10). Other resource-constrained settings can develop their telemedicine practice guidelines based on Indian guidelines. We found that telemedicine infrastructure needs to be developed at the PHC level, and at least one staff per PHC should be trained in handling telemedicine technology.

The authors thank the patients and their families and the district health officer, district leprosy officer, and district mental health program of Davangere, India, and the health officer and staff in Jagaluru, India. They also thank the Association for People With Disability, Chittasanjeevani Charitable Trust, The Live Love Laugh Foundation, and National Institute of Mental Health and Neurosciences for their contribution to the implementation of the trial. The authors are thankful to the national coordinating unit of ICMR for NMHP projects for their support and guidance.