Study setting and design

We carried out qualitative in-depth interviews, as part of a larger five-year collaborative health systems research project supporting health reform processes in the state of Kerala, India. Fieldwork for this study was conducted between the months of July and October of 2021. Eight PHCFs were selected using multi stage random sampling (detailed elsewhere [28]) across four districts in the state.

Participant selection

The recruitment of participants (health system actors) for the study was carried out using purposive criterion sampling–we intended on having representation from PHC staff (clinical and public health), LSG members and community actors. We interviewed three categories of participants from each of the selected PHCFs. 1. Elected representatives of LSG (Panchayat President-PP, Health Standing Committee Chairperson- HSC, Ward member- WM, Welfare Standing Committee Chairperson- WSC). 2. Department of health staff (Medical Officer- MO, Nursing officer-NO, Health Inspector-HI, Junior Health Inspector-JHI, Junior Public Health Nurse-JPHN, Palliative Nurse-PN, ASHAs). 3. We requested participants from first two categories to nominate a community leader from the area, defined as someone known to be socially committed and actively engaged in the community.

Data collection process

A team of three researchers (two males, one female) trained in qualitative research methods with postgraduate degrees in areas of public health, social work, and development carried out the fieldwork. Few members of the research team met the respective District Medical Officers and requested permission from them to carry out the study in the specific facility along with providing permission for overall study from department of health- Kerala. We also informed and requested permission from Medical Officers and the Panchayat Presidents of the respective PHCF of study concerned to conduct interviews with the staff from their institution. Selected participants were provided with participant information sheets in both English and Malayalam and were briefed about the study in Malayalam. In-person and online interviews were carried out at the participant’s convenient time and in language of preference. In person interviews were carried out within their workplace premise where privacy was maintained. Some participants opted for online interviews due to their unavailability during our field work (some of them had COVID infection, while others were busy with COVID management activities). For them we carried out telephonic interviews. Three participants were not available for interviews during our data collection period. After at least three rounds of interview rescheduling per participant, we removed them from the participant list.

The in-person interviews were conducted at participant workplaces. The interviews began with a detailed written informed consent process, with separate permission for audio-recording. For those interviews held via telephone, the soft copy of the consent form was sent to the participants and were returned with the signatures. A pilot tested semi-structured interview guide was used for carrying out IDIs. The interviews lasted between 20 and 60 minutes. The interviews were held in Malayalam and covered a range of questions including participants’ experiences and impressions of recent Aardram reforms in the state, the role(s) and involvement of LSG departments in these reforms, changes and challenges experienced during COVID and how they were addressed, information about the presence of vulnerable populations in the respective panchayats that were felt to be left behind from health and other services, and suggestions from the participant’s on how to improve the primary health care in the state. Data saturation began to be achieved before the last third of participants were interviewed, however the criterion sample of participants was covered to ensure representativeness from different health system actors from selected study sites. All audio-recordings of the interviews were uploaded to a secured database, accessible only to the research team. Field notes were created to support transcripts in addition to the transliterated English transcripts of the interviews prepared by the research institution empanelled third party. To ensure quality of the transcripts, each transliterated English transcript was reviewed by one of the three research team members.

Analysis

Thematic analysis was carried out to analyse the data collected using the ATLAS.ti 9 software [29]. A four-member research team (DN, HS, JJ, GB) was involved in data perusal and inductive theme generation. A draft code book was generated using the data from the inductive coding process. Multiple discussions were held among four-member team resulted in finalizing the codebook and thematic structures. During these meetings, the team came to a consensus on merging some codes with other and redefining the codes for greater clarity. ATLAS.ti 9 files from the four team members were merged and analysis were consolidated in a narrative format.

For this paper, we specifically analysed codes and themes related to experiences of community actors and processes in COVID mitigation and response activities. The interview questions pertaining to this analysis and codes emerged that were used in analysis for this paper are attached as Annexure-1. Quotations were indexed in MS Excel, analysed and combined to form themes which were further concise to form the study results of the paper.

Ethics approval

This study was approved by the Institutional Ethics Committee of the George Institute for Global Health (Project Number 05/2019). Before initiating the project, permissions were obtained from Department of Health and Family Welfare, Government of Kerala.

What community formations became active during the COVID-19 pandemic?

Kerala has a strong legacy of community participation for social causes including health. Various institutional arrangements for community participation in health have been in place in Kerala since at least the time of the PPC in the 1990s. As part of Aardram health sector reforms put in place 2017 onwards, community volunteer groups called Arogya senas (literally translated into health armies) were mandated by the health department to assist staff with documenting local health and health related issues, mostly surveillance of vector-borne disease and outbreaks in general. Prior to COVID pandemic, however, Arogya sena formation, activities and presence were erratic: a household survey of over 3,000 individuals we carried out in the same four districts in November of 2019 found that 1.4% of individuals surveyed knew what the Arogya sena was. These were early days of reform: health system actors we interviewed and even those we spoke to informally indicated that these groups were taking some time to establish themselves and only in some locations were they active in work related to prevention of communicable disease outbreaks locally.

Early into the COVID-19 pandemic in 2020, however, this changed. The government created state level RRTs and instructed LSG leaders to establish ward-level RRTs. Health workers we interviewed noted that Arogya senas constituted as part of Aardram reforms evolved to form RRT, once COVID 19 pandemic started in 2020. A medical officer said the following:

Aarogya sena was started 5 years ago. In a locality of 25 houses, somebody who stays there was assigned,… If some disease happens there or some communicable diseases occur there, they will come to know… At that time (pre-COVID time), this did not work out well. But once COVID came, several people started volunteering. Now we have a really good RRT team…They take the initiative for several issues. They work really well as informers and for source reduction (communicable disease control). (41_MO)

One community leader however mentioned a different perspective regarding the formation of RRTs. This participant pointed to the community participation which followed the 2018 floods in the state as the origin for RRT evolution: “RRT was formed initially as a disaster management group during the floods. We then diverted the group to COVID response. We could mobilise the RRT as a response to both these crisis, even though the ways to handle a flood and pandemic are completely different.” (41_CL)

Members of established youth organizations affiliated to political parties supplemented and/or supported Arogya senas, as observed by a Community Health Worker. In other cases, serving or former government employees were also closely involved. A community leader we interviewed, whose wife is an elected representative of the Panchayat, noted an adaptation they had incorporated in the membership of the RRTs in their ward.

I chose 22 members for the RRT [in our ward]. This is more than the number they had suggested. Among them, 18 are men and 4 are women. By women, I mean girls. To [supervise] this group, we also had two teachers… They are government employees. They helped us. We publicised four contact numbers as the control room. One was mine, one belonged to one of these teachers, my wife’s number and another woman’s number. (32_CL)

What did community formations do?

RRTs received directions from the Health and Family Welfare Department as well as the LSG department. Weekly trainings by panchayat officials were conducted online or in person, in abidance of COVID restrictions. Panchayat leaders used instructions provided by their local PHC and identified contextual needs to handhold volunteers. Volunteers were also provided with personal protection equipment in circumstances as needed. This training support given to volunteers was resonated by both a health facility official and by a community leader.

…during the first phase of COVID, before any others in the (anonymised) district, we met at the Panchayat level… we selected 10 volunteers from each ward and prepared a list of almost 160 volunteers. We selected a leader from each ward…So we had a working system earlier and later it became a common trend, and it was made official. We had formed the RRT by then…There was training at the panchayat level through Zoom. (11_MO)

The training they received as per the government instruction made them able to understand the situation at the panchayat level and act accordingly. (22_CL)

Panchayat leaders provided essential Personal Protective Equipment (PPE) for RRT volunteers so they would avoid risk of COVID-19 infection. One Panchayat leader also commented on this, saying that “we (Panchayat) bought masks, sanitisers and other peripherals for the volunteers (RRTs) to fulfil their duties.” (22_PP)

There was a wide array of activities that were assigned to RRTs, ranging from support for basic supplies to medicine support, and funerary assistance. As one panchayat leader pointed out, in the initial period, even food access was a challenge. Food made in community kitchens with the support of Kudumbashree SHG members and panchayats was delivered free to people who were confined to their homes either due to lock-down protocols in the local area or due to the quarantine imposed on households where someone had tested COVID positive.

RRTs were involved with support for transportation of patients to health facilities, and in distribution of medicine and essential items for persons unable to get medicines on their own, persons who were ill and bedridden. One Health Standing Committee leader furnished an example:

If someone’s condition worsens and there is an emergency, they [the RRTs] provide ambulance service…They deliver food (and medicines) for patients. Sometimes all the medicines would not be available in our pharmacy. They get it from other pharmacies as soon as I call and inform them and deliver it to the patients. (31_HSC)

In some cases, RRT members were able to carry out tasks that there was nobody else to help with, like funerary arrangements. As explained by a panchayat leader:

One incident that happened in my ward was the sudden death of a person due to COVID. He only had a brother and unfortunately, none of the family members were able to claim the dead body due to risk of infection. Members of (political party–name masked) were ready to carry his body wearing PPE kits at the time. (41_PP)

Some volunteers were also trained to provide psycho-social support to families when members or friends had a COVID positive diagnosis. RRTs had a significant role in helping people to register for COVID vaccination by going door-to-door to encourage enrollment. Finally, in some places, initiatives like small surveys were carried out by civil society organisations to support LSG department and Health department activities as well. However, there were criticisms related to political favouritism during COVID vaccination priority listing. A Medical Officer expressed his appreciation that “many gave access to their buildings to shelter COVID patients…, sponsored different things…In their respective wards, ward members unified these efforts. With the cooperation from many departments, these activities were done very well. Similarly, many volunteers came forward to manage crowds [at the COVID vaccination centres and general crowd as well] and ensure [the] COVID protocol was followed.” (42_MO)

In one of our study districts, RRTs had been collaborating with complementary community formations like the Mash (means teacher) team. This team of government school teachers was deployed by the district authorities to monitor compliance to COVID-19 guidelines at the ground level. Over time, this initiative was scaled up to other districts as well. The MO from this district also mentioned another ward-level approach for disease control measures called Jagratha Samithi (or awareness committee). This committee comprised frontline health workers (called ASHAs), public health staff, creche workers (called Anganwadi workers), elected representatives for the ward level at LSG, and local Kudumbashree members. Along with the Panchayat leadership, both Mash and Jagratha Samithis oversaw response efforts at the ward level by RRT volunteers and other youth volunteer groups, making household visits as necessary:

In [the] ward level we have Jagratha Samithi (health force led by health department and LSG)… The convener of the Jagratha Samithi is an RRT member and the chairman is the ward member. Then we have a team of people which is only in the (masked the name) district, named as Mash. Other than them, we have 3 or 4 local people and police. So, this is the team known as Jagratha Samithi. Every ward has this kind of team, and they are having regular meetings and work. But I think it should be more efficient. (12_MO)

A final role that community members and formations came to play was when COVID vaccination drives were underway in the state. RRT volunteers helped community members register online for COVID vaccination, a process that had many steps and was unfamiliar to some.

Impact of community formations

Both LSG and health department stakeholders reported meaningful engagement between communities and the health department, which they felt had a positive impact during the worst of the COVID outbreak in the state. But this was just the beginning, as pointed out by an outreach worker; there likely were future benefits as well:

We used to manage all those roles alone (COVID control activities) but with the introduction of RRT and social involvement, our burden was reduced substantially…So our roles were reduced because of the social responsibility initiative. One benefit because of the social responsibility initiative was that it made people aware of their roles and responsibilities… Now it is possible to tackle any other disease with this structure. That is the benefit. (22_JHI)

PHC staff were able to cater the community members without any hiatus during the COVID- 19 pandemic. One of the Medical Officers at the PHCF attributed this feature to the volunteering efforts of RRTs.

Especially during COVID, they [RRTs] have been useful. Prior to the pandemic, such groups have been mostly inactive…But during the crisis we are able to utilise them in several ways…We deliver it [medicines] for COVID patients, their families as well as to those in the primary contact list [and to] the NCD patients as well. We do this with the help of our volunteers. Apart from the institution staff, we have so many volunteers including students. (31_MO)

This optimism was not ubiquitous, however. Some participants raised concerns about the sustainability of RRTs as and when the pandemic restrictions were eased. An outreach worker in another district felt that “RRT was formed during COVID time…since it was lockdown and people couldn’t…go for their jobs, they were able to spend a lot of time in voluntary services…Later when the lockdown was lifted, people went back to their jobs.” (11_HI)

Others in the same district felt that even if people go back to work, there may still be a minority–about one in ten volunteers, who may remain available and be able to help in the future.

Strengths and limitations

The core purpose of our qualitative analysis was not to document or catalogue community or voluntary action, so we may not have captured all the efforts that may have been underway in each district. Further, our sample was skewed to reflect health system actor perspectives more than community representatives (more specifically RRT members and volunteers This paper does not reflect on the experiences or perceptions of community members other than leaders, who in some cases were themselves identified by health system actors (and could reflect selection bias). An analysis drawing directly from the community could provide important insights on roles as well as impact. It is quite possible that they view their engagement in different terms, we have initiated such an analysis and look forward to learning what it reveals!