Participant Characteristics
Interview data was collected for 25service users (11 male, 14 female), including 18with psychosocial disabilities, two with intellectual disabilities, two with epilepsy and three with other cognitive impairments resulting from a stroke, a head injury, or an unknown cause. The mean age of service users was 29.6 (range 17–56) [Table 1].
Table 1
Characteristics of service users included in study
| Chittagong | Dhaka |
| Male | Female | Male | Female |
Psychosocial disabilities | 4 | 8 | 2 | 4 |
Intellectual disabilities | 0 | 2 | 0 | 0 |
Epilepsy | 1 | 0 | 1 | 0 |
Other cognitive impairment | 2 | 0 | 1 | 0 |
Sixteen of these service users (6male, 10 female) were unable to speak on their own behalf, including 11 of the service users with psychosocial disabilities, both of the service users with intellectual disabilities, both of the service users with epilepsy, and the service user with a cognitive impairment resulting from head injury. In each of these instances, a carer was interviewed instead. The majority of carers interviewed were parents of the service users in question (3 male, 6 female); however, in some cases the carers were siblings (2 male, 2 female); grandparents (1 male, 1 female) or a spouse (1 male, 0 female) [Table 2].
Carers commonly identified themselves as the head of family and main income source responsible for the service user’s treatment. All but one service user lived with family members; the exception was a student who lived in a hostel for his schooling.
Table 2
Characteristics of carers interviewed on behalf of service users
| Chittagong | Dhaka |
| Male | Female | Male | Female |
Parent | 2 | 5 | 1 | 1 |
Grandparent | 1 | 0 | 0 | 1 |
Sibling | 2 | 1 | 0 | 0 |
Spouse | 0 | 0 | 1 | 1 |
Content Analysis
Five overarching categories were identified to structure our analysis: 1. Explanatory models; 2. Help-seeking behaviors; 3. Impact of services; 4. Challenges and barriers to improving mental health; 5. Recommendations of users and carers. Results are presented for each of these categories below, with examples from interview transcripts used to illustrate key trends identified through content analysis.
Theme 1: Explanatory models
1.a. Unknown or supernatural causes
Most interviewees (n = 14) did not have any explanation for why a service user had become unwell. For example, one student reported: “Since September 2013 when I was an SSC[Secondary School Certificate]examinee, I was suffering from mental illness. But I don’t know why this was happening to me... I had no clue” (ID 53: 21year-old man with cognitive impairment from unknown cause). On the other hand, two participants offered supernatural explanations, i.e. that the service users had been possessed by jinn[demons], as in the below:
There was a cotton tree. The problem started after cutting that tree. She started talking abnormally. She used to cry without any reason. She stopped taking food… She didn't want to go anywhere with us. Then, she started wearing niqab with a burqa[religious attire]. And one day, she left the house without informing us… We found her later.(ID 56: Mother of 18 year-old woman with psychosocial disability)
1.b. Traumatic life events
Four respondents identified traumatic life events precipitating the onset of illness. These events included the death of a father or husband, abuse and sexual assault, and early child/forced marriage. In the below narrative, a member of the PHRPBD field staff interjects in an interview to help a mother explain what happened to her daughter after being married against her will as a teenager:
She started behaving like that after her marriage. She was 15 when she got married. She did not want to go to her in-law’s house. They [the in-laws] forced her. They took her with them forcibly… just before the wedding, I mean when the groom was on his way to the venue, she started acting abnormal. She started uttering some mantras. Gradually, her problem increased. Maybe she didn’t like her husband. Her husband was a handicapped man; she didn’t want him. She disliked him… Moreover, she wanted to pursue her education. (ID 46: Mother of 27 year-old woman with psychosocial disability)
In another instance, a carer blamed abuse by a young woman’s stepmother for causing the illness: “Her father left her mother and took her with him. Then her stepmother locked her in the house and gave her a frightened life” (ID 67: Grandmother of 20-year-old woman with psychosocial disability). Two participants identified rape as the main factor precipitating the onset of illness, as in this account by a service user:
That year on Eid day, one guest came to our house. He touched my hands and was taking me to have snacks with him. Then suddenly something happened that I didn’t want. I wasn’t feeling good about this. Since then I changed and the problem developed. (ID 52: 28 year-old woman with psychosocial disability)
1.c. Physical causes
As opposed to psychologically distressing life events, physical traumas were also reported as a key factor behind some service users’ illnesses. Two carers reported that head injuries from accidents (a severe burn, a fall from a building) may have been responsible; for example: “He fell down from the fourth floor. Not on the ground. Luckily, he fell on the third-floor terrace of the opposite building. But he broke his hand completely and also got injured in his head” (ID 48: Father of 22-year-old man with cognitive impairment).
Underlying health conditions, such as epilepsy (in two cases) and stroke (in one case) were also reported. In this interview, it was unclear whether the carer may have also considered his physical violence toward his daughter to have played a role in activating symptoms shared by his brother:
I have a daughter; she also needs care. She is suffering from the same problem just like my brother… we didn’t know that she had the same problem. When she was in class three, we identified her problem. One day, I beat her. She started crying and convulsed the same as my brother and fell on the floor. (ID 58: Brotherof25 year-old man with epilepsy)
Theme 2: Help-seeking patterns
2a. Formal health care
Participants generally sought care from a number of different formal and informal providers before learning about PHRPBD’s mental health camps. Only one service user reported that the mental health camp was her first point of contact with mental health services. Most participants(n = 19) reported visiting other health services—sometimes without seeing substantial improvement: “At first in Chondona [sub-district] and from there to Amra Hospital and then in Chittagong Medical College… and then to a Psychiatrist” (ID 51: 18 year-old woman with psychosocial disability).Even at Pabna Hemayetpur Mental Hospital (PHMC), Bangladesh’s largest psychiatric hospital, service users were not always properly referred into appropriate services, as a PHRPBD field staff member helped a mother to explain:
They admitted her to Pabna Mental Hospital through a broker. But they kept her in a place which wasn’t appropriate for her. I mean a proper place. There are so many divisions in Pabna Hospital, but they kept her with drug addicts… for six months.(ID 46: Mother of 27 year-old women with psychosocial disability)
Roughly half (n = 9) of the participants who reported visiting other health services said that they went to government-run tertiary hospitals, such as Chittagong Medical College (CMC), PHMC and Shaheed Tajuddin Ahmed Medical College. Five participants said that they visited more locally accessible health services, such as nearby government hospitals or health complexes, private clinics, local doctors or family doctors. Two of these participants visited uncredentialed paramedics who are often treated as doctors in rural areas.
Four service users were seen by a psychiatrist (two at CMC). Three reported that they had been admitted to inpatient care (one at CMC and two at PHMC) before coming to the camp. Three carers said that they had taken a service user for treatment by a neurologist or neurosurgeon. Only one carer reported that his child had been referred to a specialist at the Autism Care Centre; however, his doctor had advised that there was no need to go if improvements in development were noted, so the appointment was never made:
Then I took him to a doctor, a child specialist. He told me to wait for four years. If he fails [to improve] after four years, then admit him to autism center. But he became normal by the time. His speech and other things became normal within the age of three. He started running with all his energy. (ID 48: Father of 22 year-old man with cognitive disability)
While participants were not specifically asked how long they lived with symptoms before accessing care for the first time, it was clear that many had spent long periods without treatment. According to a field staff member, at least one service user was actively prevented from accessing care by her in-laws: “She remained untreated in her husband’s home for 11 months… after 11 months she was admitted in to Pabna Mental Hospital for six months” (ID 46: Mother of 27year-old woman with psychosocial disability).
2.b. Traditional healing
Eight participants reported that traditional healers(religious person, ojha, kabiraj, boiddo) were consulted prior to attending the mental health camp. In some cases, multiple healers were visited:
My uncle-in-law was a healer, and we took her [the service user] to show him. After that, we were unable to feed her for five to seven days. Water was flowing out of her mouth. After listening to other people, we took her to the Dohazari [where the healer lives].(ID 56: Mother of 18year-old woman with psychosocial disability)
Several participants (n = 6) reported disappointment with the services of traditional healers. One carer said there was no change after treatment by healers. Two service users complained that they had wasted time and money on traditional healers in hopes that they might be able to find a cure; one had spent the equivalent of nearly $3,000 US: “Went to religious leaders for 10 years. I mean Hujur, Badiya [priest/healer], almost 2.5 lakhs taka was spent”(ID 60: 39 year-old man with psychosocial disability).One carer reported skepticism about healing practices, even as they were being performed on his son:
Initially when it started, I mean the convulsions [epilepsy], we were roaming around here and there. He [traditional healer] came here. Then he inspected him [service user] and treated him with a broomstick. But we didn’t believe him. We didn’t allow him to give him Tabij [amulet]. These are actually of no use.(ID 64: Father of 18 year-old man with epilepsy)
2.c. Mental health camp
Many participants (n = 10) learned of PHRPBD’s mental health camps through the outreach of its field staff, self-help group members, “apex body” (an umbrella group for local self-help groups) or partners in the health system. Several participants (n = 16) noted how important the support of field staff was in facilitating access to PHRPBD’s services. Here, a man interjects in his sister’s interview to explain: “Then we heard about the [self-help] group, and then they [field staff] supported us with many things. We visited doctors through their help. And also brought her [with the carer] to their official programs” (ID 52:28-year-old woman with psychosocial disability).
Other participants(n = 15) learned of the camp indirectly through word-of-mouth from community members such as teachers, local police officers, social welfare officers, political party members and other recipients of the camp’s services. A few of these respondents (CG: n = 2; SU: n = 1) said that service users were brought to the camp with help from family members and neighbors:
My brother told me about Asharalo [name of the camp]. They gave us different kinds of supports, they told us to never think that we are mentally ill persons and [therefore] unable to do anything. They gave us mental strength. Once I used to feel that I was very weak. Now I feel good. (ID 53: 21year-old man with unknown condition)
Camps were often the entry-point into PHRPBD’s self-help groups and other activities, even for those who were already known to the program, as a member of the local field staff explained during an interview with a mother:
We talked about it in the team. We discussed the information in the team… She is our group member plus… we identified her severity of illness... Then when she came to the camp, she got selected as a service user.(ID 46: Mother of27year-old woman with psychosocial disability)
Theme 3: Impact of services
3.a. Mental health care
One service user felt that there had been no change in his condition after receiving treatment from the camp, and two carers reported that service users had relapsed. However, the majority of participants noted improvements and felt treatment to be beneficial, even though it was mostly limited to medication. Twenty respondents reported significant improvements, leading a few families(n = 2) to stop using physical restraints, as the health worker quoted above commented: “There is a huge change in her! They [family members] used to tie her up… Now she cooperates” (ID 46: Mother of 27-year-old women with psychosocial disability). A carer of another young woman made similar observations: “[We used to restrain her] with [a] chain…. We kept the door closed. Sometimes she disturbed us in [our] work, didn’t want to understand. Now she understands if we say [she needs to be quiet] and stays silent” (ID 43: Mother of 17-year-old woman with intellectual disability).
Examples of improvements were in communication and social skills, interpersonal relationships, sleep and general affect: “There are some changes, like she talks with others, interacts and participates in the group meetings. Earlier, in the self-help group meetings she couldn’t sit. She used to walk away” (ID 49: Sister of 22-year-old woman with psychosocial disability). In another instance, small changes resulting from treatment opened the door to more substantial and positive life changes resulting from a new work opportunity:
After taking medicine, a few developments were noticed. ‘Changes’ means, he didn’t want to talk or share anything with us before. He used to watch TV all the time and didn’t talk much. After he started working at [name of electronics store], the improvement in his behavior began. I know that he won’t get salary but there were 10–15 people working with them… because of working together, now he feels free and shares things. (ID 48: Father of 22-year-old man with cognitive impairment)
Distressing symptoms such as wandering, aggression and epileptic seizures were also reported to have subsided with treatment: “She used to cry and scream [in her sleep] … she used to hit people with whatever she has… it was more intense before [she was given the treatment]” (ID 43: Mother of 17-year-old woman with intellectual disability); “She is better than before. ‘Better’ means, earlier she used to say a lot of ‘akrum’,‘makrum’ [incoherent speech], used to sing and go here and there. Eventually, she became calm. Now she sits at home” (ID 61: Mother of 25-year-old women with psychosocial disability). Another carer reported: “Sir [doctor from the camp] gave me medicine and after taking that medicine, things were almost under control. His convulsions stopped” (ID 58: Brother of 25-year-old man with epilepsy).
3.b. Social and economic support
PHRPBD subsidizes the cost of medication for some participants in vulnerable situations: “They [the camp authority] offered us medicine for one month” (ID 56: Mother of 35 year-old woman with psychosocial disability).Seven respondents reported that they had received some of their medication from the camp free of charge, though they were aware that this support would not be permanent and many felt that it was not sufficient as-is: “I got it [medicines] from camp, most probably for one month and highest two months” (ID 45: 38 year-old woman with psychosocial disability).
Other types of support accessed via PHRPBD included disability allowance, education support and vocational training. Seven participants reported that service users were receiving disability allowance, which is paid by the government but often difficult to access without the aid of more experienced members of the self-help group and field staff:
We tried Apa[addressing a woman] but could not get it [allowance]. Not even in seven years! So, she didn’t receive the disability allowance. She is trying to get eligibility for the allowance. And I mentioned that there are not sufficient allocations for disability allowance. So, I also raised this issue at district level. It is not high enough. The government allocated [budget for] two disabled persons [to receive allowance]in each ward five years back. Now it has increased but still not sufficient. (ID 49: Sister of 22-year-oldwomen with psychosocial disability)
Three participants explained that service users were also receiving support to exercise their right to education: “When I asked for a disability certificate from the councilor, he gave one... It helped him [the service user] to sit for the exams and further studies” (ID 48: Father of 22year-old man with cognitive impairment). A mother of a PHRPBD service user described how the self-help group intervened when another one of her children with an intellectual disability was being discriminated against by a teacher:
The teacher said he doesn’t read or write, always [just] sits there, [so] give him home schooling. I told her that he doesn’t study at home, that’s why I bring him here. If it is not today, maybe he will learn to read and write tomorrow, he will learn at least something. After all that, when he failed at exams, my elder daughter went to the school. The teacher said,‘I have told your mother to take him home, he doesn’t study here, give him home schooling.’ I told [the self-help group] about it here and the group went to the school...I’m feeling good after seeing the change of my son. (ID 43: Mother of 17 year-old girl with cognitive impairment)
The emotional support provided by self-help groups was seen as important by most participants (n = 17), including both service users and carers. Here, one woman contrasts the difficulty of her relationships at home with the positive relationships she has established with self-help group members: “They are cheerful. I was beaten by my sisters-in-law and brothers, but here I am getting medicines and everyone loves me a lot” (ID 45: 38-year-old woman with psychosocial disability). The mother quoted above also remarked on the change self-help groups had made in carers’ lives:
If anybody says something [cruel] to them [my children] or hits them or does something to them, they [the self-help group] tell me to report to them, call them. They inspire me and give me courage, tell me not to neglect [my children], this type of courage. (ID 43: Mother of 17 year-old girl with intellectual disability)
Theme 4: Challenges and barriers to improving mental health
4.a. Medication
Despite a general sense of positivity regarding the benefits of treatment, side effects of medication were described as a challenge by six participants. Common complaints were feeling drowsy or lethargic after taking medication, though some side effects were more severe: “We gave him the dose of medicine. We noticed his legs swelled. My mother started crying” (ID 58: Brother of 25-year-old man with epilepsy).
Further, the cost of treatment was described as a barrier by several participants (n = 11), and sometimes led to incomplete or missed dosages, despite the partial subsidies offered by PHRPBD to some service users: “At times, I could not bring medicines because of financial problems. Almost 15 days it was stopped. After stopping medicine, he started talking abnormally again. 1200 taka after every 15 days is too much for me” (ID 57: Father of 25year-old man with psychosocial disability). These challenges were especially pronounced for those who had not yet been able to access their disability allowance or to attend the mental health camp:
Fees of the doctors range from 500 or 1000 taka. For medicine I have to spend 2000 taka, 2500 taka or sometimes 3000 taka approximately. I can’t afford his treatment. I have money problems. I don’t have any income, not a single penny at all. If he [the service user] could be given disability allowance, he would be benefitted. If we get free medicine from the doctor, we can feed him. (ID 55: Brother of 35year-old man with psychosocial disability)
Although interviewees did not raise this as a concern, it is possible that overprescribing may have contributed both to the side effects and high cost of treatment. Several participants(n = 6) were prescribed three or more different medications at the same time—up to five, in one case: “At first he [psychiatrist] gave five types of medicine… after one week he reduced it to four types… [now it is] two or three types” (ID 57: Carer of 25-year-old with psychosocial disability).
Some carers explained that they had very little knowledge of mental health or how best to treat the service user, and yet still took it upon themselves to make decisions about service users’ medication, without consulting health professionals. One carer gave his brother’s medication to his young daughter when she started having similar symptoms. Two carers said they stopped the service user’s medication, as in the below quote:
He [doctor]didn't say to stop the drug. He said if she [service user] feels good, we should contact him… she won’t continue the medication. If we took her to the doctor, he would either reduce the drug dose or discontinue the medication. So we stopped the medicines by ourselves. We didn’t take her to the doctor. (ID 56: Mother of 18year-old woman with psychosocial disability)
4.b. Accessibility
While many participants (n = 14) reported that the mental health camp was easily accessible, one service user said that the cost of transport was a barrier. Two carers complained that because the camp was not based in their area, it was more difficult for them to attend. Five carers explained that it was logistically difficult to transport service users who were very unwell, even to a nearby camp, and that service users were often unable to travel on their own:
After visiting there [camp], she [the service user] is getting better. But it’s been a lot of trouble to give her medication. She was behaving abnormally during the medical tests. One day, she lost her way to home and went to the club of Selpata. Then again, she was behaving abnormally. (ID 56: Mother of 18-year-old woman with psychosocial disability)
In especially desperate situations, service users were physically restrained and brought to the camp by force: “After binding his [service user’s] hands and feet we have to carry him by vehicle to the camp” (ID 58: Brother of 25-year-old man with epilepsy). Stigma was also a barrier for some. In this same case, where a man was tied up to be taken to camp, the man’s brother explained that he didn’t want to bring his daughter to the camp or to any other mental health services, as this might affect her marriage prospects:
We discussed about her [service user] problem with our uncle. He forbade us to reveal her disease. He hid, Apa[term for addressing a woman].My child is very young. She is my daughter, that’s why I could not say or reveal. I didn’t take her to the hospital for fear of people [learning of her condition]. She is a girl that’s why.(ID 58: Brother of 25 year-old man with epilepsy)
4.c. Violence and abuse
Nearly half of participants (n = 12) talked about the stigma and discrimination they faced from their families and communities, who considered them cursed, called them names, and otherwise bullied or isolated them. Sometimes, mistreatment of service users grew violent. There were two reported cases in which service users had been beaten and raped by local men. A member of the field staff helped one carer to explain how this had led to an unwanted pregnancy, and as an unmarried woman the service user faced further stigma and estrangement from her family as well as criticism from community members:
We don’t know [who the culprit is] and she also isn’t saying anything… She speaks very little and only with her sisters... She doesn’t talk about this thing. Gradually she stopped talking with everyone. We are trying to find out the culprit…after this problem when she got pregnant, we went to the government hospital, but it was already three to four months [into the pregnancy]. So the doctor said that abortion is not possible… Now she is five months pregnant… Big problem for them is the community people. How can I explain to you? The community people always disturb her with different types of criticism. The society doesn’t want to keep her in this hospital. So, the family wants to send her to some other place for the delivery. After her delivery, then they [family members] can take her. But, the family also wants to send her away because they are ashamed or they can’t maintain her.(ID 49:Sister of 22 year-old woman withpsychosocial disability)
As well as sexual violence in the community, domestic violence was also especially prominent among female service users. Although this was not the subject of our questioning, three service users described the violence they faced at home. In one case, physical abuse was intertwined with a service user’s struggle to maintain financial autonomy from the rest of her family:
My elder sister-in-law, she is a bad woman. She was our tenant. She took my money, all my earnings from the garments job… My brothers also took my money, beat me and threw me out of the house... His wife has also beaten me, held a knife on my throat… My younger brother saved me. (ID 45: 38 year-old women with psychosocial disability)
Theme 5: Recommendations of service users and carers
5.a. Scale-up mental health camps
As described earlier, many participants felt they had benefitted from the mental health camp, and therefore wanted to see it held more regularly in their own locations and also scaled up nationally so that others in need of mental health care could benefit (n = 10): “If it spreads in the whole area, it will be great… I wish the program spreads widely” (ID 65: Husband of 39-year-old woman with psychosocial disability).
The community thinks that this kind of help is very good for them [service users] and the community also wants more services from them [PHRPBD]. Community people, all kind of disabled people, mentally ill people can easily get this service. So, people think that this type of camp should be arranged on a regular basis.(ID 53:21 year-old man with cognitive impairment from unknown cause)
Implicit in many participants’ responses(n = 19) however were critiques of PHRPBD’s current model of mental health care: that for those who relied on the camps for subsidized treatment, they were too infrequent, and that more follow-ups were needed between camps. To illustrate: “We're in financial trouble. So, if you're arranging a health camp two or three times, it will be good for us” (ID 56: Mother of 18year-old woman with psychosocial disability); “If the team [of field staff] would be well formed, they could work more effectively. Apa [local term for addressing a woman], if our camp becomes easier, that will be great. More follow-up and rapid improvement” (ID 44: Mother of 24-year-old woman with intellectual disability). A man interjected in his sister’s interview to explain that services generally are not provided on a regular enough basis: “From this project [there are] different types of support my community people are getting, like my sister. Sometimes the project gave us some medicine, sometimes advice or other services. These services are not constant. It should be regular” (ID 52: 28 year-old woman with psychosocial disability). One carer suggested that the limited number of camps in the area might also place pressure on those from the communities hosting camps, as they become the de facto contact people for those coming from outside PHRPBD’s catchment areas:
You see, I am getting treatment in my area. The project you have started is area-based. If anyone gets information from me, they will communicate with me always. If the camp is in every place, it will be easier for everyone to keep in communication with you. Thus, they will be benefitted a lot. (ID 64: Father of 18year-old man with epilepsy)
Another carer also suggested that PHRPBD could use additional outlets to improve communication and raise awareness of their services:
They treat patients, which is helpful to everyone. The way you promote through leaflets is not enough. If you do the same in newspaper and television advertisements more people will get benefited. You can also organize health camp two or three times in a year. (ID 57: Father of 25year-old man with psychosocial disability)
5.b. Increase social and economic support
In addition to those who complained they were not receiving enough support with the cost of medicines (n = 2), a few participants (n = 4) requested that PHRPBD increase its employment and educational support (including vocational training) for service users, for example: “If you donate some of the money, it will be good. Help her to give a flower shop. It will be beneficial for her” (ID 67: Grandmother of 20 year-old woman with psychosocial disability).Participants argued that by becoming more independent, service users could meet their own expenses, reducing the burden on the program as well as their families: “There are many people who are disabled and mentally ill persons, if there is an opportunity to give them any training, then they are not being a burden for their family” (ID 53: 21 year-old man with cognitive impairment from unknown cause);“If we get jobs through this group, this would be better. I am a visually impaired man, but if my son gets good education, he will get a job, that will bring about a big change” (ID 55: Brother of 35 year-old man with psychosocial disability).In terms of social support, two carers recommended more recreational activities for service users and to find ways to increase their involvement during group meetings: “He wants to do something like this...like, singing, dancing. If any marriage ceremony is held here, then he wants to dance with others. If you can arrange some recreation, then there are some chances to be cured” (ID 63: Mother of a 25-year-old man with psychosocial disability).