Table 1 summarizes the demographic characteristics of the 15 non-pilot participants. When asked how many patients they served for HOPE, and how many HLG sessions they attended, several ASHA workers gave ranges, or were unable to come up with numbers. In the case of ranges, the lower number of the range was taken to calculate an approximate mean. The included ASHAs had on average an age of 38.6 years, 10.13 years of education, and 8.67 years of experience in the government ASHA program. They each worked with approximately 10 patients for the HOPE study, and attended 12.67 HLG sessions.
Table 1
Characteristic | Range | Mean |
Age | 28–46 | 38.6 |
Number of Patients served in HOPE study | 5–15 | ~ 10 |
Years in ASHA program | 3–11 | 8.67 |
Number of HLG sessions attended | 5–21 | ~ 12.67 |
Years of education | 7–12 | 10.13 |
Over the course of 15 qualitative interviews, ASHA workers revealed their perspectives on their participation in the HOPE study and their beliefs about mental illness and non-communicable disease. The themes that emerged from these interviews were: interactions between ASHA workers and patients, ASHA workers’ knowledge and beliefs about mental illness, barriers and facilitators to treatment, and ASHA workers’ perspectives on the HOPE study.
ASHA-patient interactions
The ASHA workers described their interactions with patients as positive and productive, and these interactions were crucial to recruitment and engaging patients. ASHA workers confirmed that they helped to explain the study to patients who needed clarification and motivate patients to come to the health screening fairs, enroll in the study, and attend the HLG sessions. They stated that they encouraged patients to follow health advice and practice diet changes, exercise, and stress management techniques like yoga and breathing exercises, both during group sessions and home visits. ASHAs mostly believed that patients listened to them and took their advice.
However, not all interactions with patients were positive. Some ASHA workers mentioned that they were uncomfortable interacting with certain patients because the ASHAs did not have sufficient knowledge about relevant topics.
“Before I was not aware of the topic... and if I tell incomplete knowledge maybe the [patients] won’t accept, I was thinking like that. Later I got to know more information about smoking, smokeless tobacco, and all, I am comfortably speaking now.” [A104]
Additionally, several ASHA workers mentioned that some of their patients were hostile towards them, which led to the ASHA workers avoiding interactions with these patients – some patients refused to listen to the ASHA workers, insulted them, and told them they knew nothing.
“The patients were telling me that they are elder than us, so why should they listen to our words. That we don’t know anything, they know everything, like that they were telling. They said that other people will tell me things, and then I am coming and telling these things to them - I don’t know anything, but they [patients] are experienced and know everything.” [A113]
ASHA knowledge and beliefs about mental illness
Many of the ASHA workers reported that they had held misconceptions about mental illness prior to their participation in the HOPE study. The most commonly described beliefs were that mental illness is caused by evil spirits and that patients with mental illness do not improve. ASHA workers also occasionally mentioned that they had believed mental illness patients were different from other patients and they didn’t know how to approach these patients.
On the other hand, some ASHA workers who had received training on mental health as part of the government ASHA program were able to identify mental illness. Others had personal experiences with mental illness, which influenced their beliefs.
“Yeah, mental illness... When I was small my mom also got the same – the god rituals, all those things we did... Once my father told that all those things are not required, and he will take her to NIMHANS [Psychiatric institution] and get [her] treated.” [A111]
Most ASHAs said that following their participation in the HOPE study, they understood that mental illness is a treatable condition. ASHA workers identified sitting alone, talking to oneself, and refusing to leave the house as symptoms of mental illness.
Some of the most commonly cited causes of mental illness were the patients’ co-morbid physical problems and “overthinking”.
“Before she [a patient] was thinking too much about her disorder and about the family it seems. Because she’s staying with her husband, and he is too old now. And her children have shifted to Bangalore it seems, nobody is taking care of her now. So she was thinking too much about her life, how it will run and what should she do. All those things. And in the mean time she got this sugar [diabetes] also, how to treat, all those things she was thinking too much.” [A116]
Other causes included family problems, family deaths, and other stressors. When asked how to treat mental illness, most ASHA workers said that controlling the patient’s physical disorder would cure the mental illness. Every ASHA worker seemed to believe that mental illness is always temporary, and always treatable.
“Ok, she [a patient] got into depression because she got diabetes. So when the diabetes is under control and it’s treatable, when she got to know that, she became normal slowly.” [A104]
Another common belief among ASHA workers was that mentally ill patients needed to stop worrying too much, in order to relieve tension.
Their understanding of the complex etiology of CMD remained incomplete at the time of the interviews. No ASHA worker mentioned any genetic or neurological causes of mental illness. Additionally, they had a simplified understanding of CMD treatment, failing to mention any forms of psychotherapy, and their common advice to “stop worrying” was met with resistance.
“Patients are saying that we are telling them not to think too much about their problems... but the patients are facing family problems and they haven’t constructed their house. They have that work and this work and all those things, but still we are telling them not to think. They asked how can they be without thinking?” [A105]
Several ASHA workers mentioned a need for more formal and detailed training about mental illness, particularly to help them become more adept at giving advice about treatment for mental illness.
Treatment facilitators
Positive relationships between patients and ASHA workers helped in treatment compliance and retention, and helped improve patients’ understanding of their health conditions. ASHA workers frequently told stories where patients gave them credit for their improvement.
“Overall the patients told that even we [ASHA] are taking care of their health so much, why can’t they take [responsibility for their own health]? Now, even they start taking care of their health, they thank me for my help and support. Before the patient was not knowing anything about her health condition and how to take care of health. But now she has learned everything and whenever I do home visit, she will be telling, thankful, that because of me only she got the treatment and learned many things.” [A116]
ASHAs viewed the HLG sessions as very helpful for patients, especially due to the friendships that patients made in the groups. In addition, they believed participation in HLG sessions helped patients bring structure and regularity to their schedule.
“Usually... if a person is going [to the] office... every day they will eat at 8:30. If the person is staying at home, they won’t [eat at] this exact time – they’ll eat whenever they are free. The same thing happens [to the patients] – if they are taking the sessions, they’ll come regularly in time and start doing [the techniques]. If they are staying at home, it’s not possible for them.” [A107]
Many ASHA workers claimed to have implemented lifestyle changes in their own lives following participation in HOPE, and to have disseminated their new knowledge informally among other ASHA workers and village members.
Perhaps the most frequently mentioned facilitator to treatment was that it was offered free of cost. ASHA workers often used this to motivate patients to attend screening fairs and sessions. ASHA workers occasionally mentioned that support from patients’ families helped facilitate treatment, with families pushing the patients to go to sessions and take care of their health.
Treatment barriers
An important barrier to treatment was the lack of accessibility to both the district hospitals and to the HLG sessions at the PHCs. Every ASHA worker mentioned at least one accessibility-related barrier during her interview, including distance to the PHCs, the transportation costs, the financial consequences of losing a full day’s work, disability-related issues, and work and family obligations.
As described previously, negative relationships between patients and ASHA workers were occasionally a barrier to treatment. Also, ASHAs involvement in the government-sponsored ASHA program and/or their personal housework sometimes interfered with effective participation in the HOPE study.
ASHA workers occasionally mentioned that some patients were particularly distrustful of the medical system and government health programs.
“At the start when we were visiting village members, the villagers would think that we are coming for some survey, and we’ll do our work, we will not do anything for the villagers. The villagers were refusing to take me [ASHA] into the home... Usually we wear a pink colored sari, so when we wear that and go [to houses], they [villagers] think that we are coming for some survey – larvae survey or some other thing, leprosy.. It’s not going to benefit them. So they were not responding properly to us.” [A117]
This lack of trust occasionally extended to HOPE study staff, especially regarding the study’s intentions.
“Some of the patients were saying that [study staff] will come 1 or 2 times and they won’t take care then – they'll do whatever they want... This means, that some NGOs will come for 1 or 2 days and the NGOs will give all [kinds of] hopes to the villagers, but they will leave [after 1 or 2 days] and they will not come back again. [Patients thought] that even the HOPE study staff also do same thing, that they’ll come today and then the next day they won’t come.” [A107]
Similarly, ASHAs mentioned that some patients did not understand the purpose of medical procedures like blood tests, which scared them away from taking part in the HOPE study. With such patients, however, ASHA workers and study staff were able to intervene and explain the purpose of study procedures.
ASHA perspectives on the HOPE study
Most ASHA workers were able to remember the general procedures of the HOPE study and the content of the HLG sessions, without prompting. Some ASHAs were unable to recall all of the topics of the HLG sessions. One ASHA worker was unable to recall any of the components of the HOPE study.
In general, ASHA workers believed the HOPE study was useful for patients, claiming that the health of almost all participating patients improved. They reported that most patients enthusiastically participated in HLG sessions and practiced the tasks taught, and some patients still maintained the relationships they formed with other patients.
“65 year male. Having BP (blood pressure) and sugar [diabetes]. Before, his BP and sugar was not under control. Once he started practicing our techniques, it became under control, and now also he’s practicing the things... he’s taking medication regularly, and walking every day. And maintaining the diet pattern, which was not there when he first came here. And he is not taking tension for every matter. He’s well and good now.” [A108]
The ASHA workers claimed that patients were grateful for the opportunity to participate in the HOPE study, especially because many patients had not known about their various illnesses, and the screening fairs helped them become aware.
“...some patients were not at all checked for the BP and sugar [diabetes]. Once they got checked and got to know they have BP and sugar, the treatment got started. Those people were telling that because of me only they got to know about their health condition.” [A113]
ASHA workers were reticent when asked about challenges associated with the HOPE study. The most consistent challenge they identified was irregular attendance. They occasionally told stories of patients whose health declined following the end of the study. ASHAs believed that these declines usually occurred because of a death in the patient’s family and/or because patients stop practicing the tasks taught during the HLG sessions.
“A: But one patient, his wife died recently, so because of that he’s a bit... sad. Before her death he was doing [the techniques] it seems. Now he is not doing anything.
SB: He’s not doing anything... Are there any techniques he’s using at all?
A: No. He’s in a sad [mood] so he’s not..
SB: How often do you visit him?
A: Every day I go.
SB: You see him every day? Have you tried to remind him about the techniques?
A: Every day I’m telling but he’s not..
SB: Why doesn’t he do it, what does he say?
A: He’s not refusing and he’s not doing. He’s just listening. He’s not interested in that now.” [A105]
ASHA workers did not have many suggestions for improving the HOPE study. Most simply asked that the program include more patients and be of longer duration. Some requested that additional topics be added, like menstrual health and hygiene. Several ASHA workers asked for more information regarding mental illnesses other than CMD, more details on NCD, and more formal training in mental health intervention.