Is the RISE CBR intervention acceptable?
Assumption 1a: People with schizophrenia and caregivers are willing and have time to participate
Participants received a mean of 21 home visits (range 17–27 visits) (Table
2), matching the anticipated total. CBR participants generally welcomed the service, and most described a good relationship with the CBRW. Most CBR participants said they could rely on the CBRW. For one caregiver, the fact the CBRW was from the local area was important. CBRWs felt that a trusting relationship was essential for positive outcomes. The majority of CBR participants were happy with regular home visits, often disregarding the time cost and potential stigma as long as CBR was helpful.
Months CBR received | 11.2 (8,12) |
Number home visits | 21.1 (17,27) |
Number optional goals achieved/selecteda | 5.5/8.9 (62%) |
Number meetings with community members | 2.4 (0,10) |
Number referrals to health centre/ HEW | 1.6 (0,4) |
“I didn’t worry about shortage of time, because [CBR] was very useful for me…It is for our own good. I would be very happy to learn the whole day, let alone for two hours”.
(caregiver-1-E)
However, some participants disengaged for several weeks whilst they were visiting relatives or at holy water sites. One CBRW felt that the tapered reduction to monthly home visits made engagement harder to maintain as the intervention progressed. For three participants, clashes over the CBRWs’ recommendation to take medication contributed to unwillingness to participate in CBR. These participants felt that CBRWs ignored valid concerns about side effects and ‘nagged’ them to continue medication. These issues were sometimes resolved by minimising the emphasis on medication, but in one case there was a breakdown of trust that contributed to the participant stopping CBR after eight months.
“It is boring when such advice is given repeatedly. I think the advice you got once could help you in your life…When [the CBRW] nags me repeatedly, I tell him that I don’t want to continue [CBR]. ....He always created stress in my life.”
(woman with schizophrenia-4-E)
A further two participants withdrew at 11 months, both of whom had improvements in functioning. In one case CBR was terminated because the participant moved away for work. A minority of participants complained that CBR interrupted their work, with the potential to lose customers or neglect time-dependent farming tasks.
“When I am at the farm with the oxen…I feel irritated when [the CBRW] came because thirty minutes is too much for me…The farm work is a tiresome work as it needs much dedication…Unless the discussion with her is after the harvest work, it will be too long”.
(man with schizophrenia-1-E)
It was often easier for female participants to take part as they could do domestic tasks, such as handicrafts, whilst talking with the CBRW. In several cases CBRWs successfully adjusted visit timings or frequency to fit in with participants’ schedules. Nevertheless, there were some complaints that CBR sessions were boring or easily forgettable. Several participants requested written materials to refer back to. Only one participant indicated that home visits could be stigmatising. Several CBRWs reported initial difficulties finding a caregiver willing to engage in CBR. Whilst for some this was resolved with careful negotiations, two participants had minimal family input.
Most CBR participants did not report any negative effects of community mobilisation. However, one man was unhappy with community awareness-raising, suggesting this could result in interference from outsiders. One optional activity, for people with schizophrenia to describe their experiences in a public forum, was not carried out in any sub-district. This was due to difficulty identifying a participant who was confident to speak in public.
Assumption 1b: CBR can address the needs of people with schizophrenia
All participants achieved all core goals. Participants selected a mean of nine optional goals (range 6–11), of which a mean of 5.5 (62%) were achieved (range 13–100%) (Table
2). There was a tendency to select more goals than would be achievable in 12 months. Initially the caregivers of the participants with co-morbid intellectual disabilities reported high hopes for change. These families expected complete recovery after a few weeks of medication, and were later disappointed.
Most participants demonstrated agency, disengaging if the service did not meet their needs, and articulating concerns in interviews. There was an almost unanimous expectation of financial support or free medication from CBR, despite explanations to the contrary at recruitment. This expectation reportedly arose from experience of non-governmental organisation hand-outs and a time compensation payment at baseline data collection. Given the severe poverty experienced by many participants and the out-of-pocket payment required for medication, the inability of CBR to provide financial support created significant disappointment and confusion. Several CBRWs spent the first few weeks negotiating to continue CBR and participants generally accepted what CBR could offer. However in one case these issues contributed to the participant withdrawing.
Assumption 1c: CBRWs are willing to work with people with schizophrenia
CBRWs were willing, and sometimes highly motivated, to work with people with schizophrenia. There were 220 initial applicants and no CBRWs left the project. Reported attitudes towards people with schizophrenia improved as the pilot proceeded, including lowered fears of violence and increased expectations of recovery.
“
my perception of a mentally ill person has changed after I visited [the CBR participant]…My confidence was very little at the start. I used to think that mentally ill people always carried daggers to hurt people. But when I entered the house, I understood that he is not that kind of person.”
(CBRW-8-E)
However, two CBRWs noted that whilst not all people with schizophrenia are violent, there are cases where this is true, and procedures to ensure CBR safety were felt to be important by supervisors. Some CBRWs and supervisors described stressful situations and also sadness at difficult circumstances. Peer support, during group supervision and also informally, was appreciated as a chance to gain new perspectives on how to overcome problems, or simply to derive relief from discussing issues.
Community leader meetings were difficult to arrange but were held in all sub-districts. Some community leaders were too busy or difficult to contact, whilst others were suspicious that the project was related to a political party. Several CBRWs felt community leaders were expecting financial benefits from participation, which was resolved by piggy-backing the meetings onto existing sub-district gatherings. Awareness-raising events were held in all sub-districts, at the sub-district council, Women’s groups,
edir (traditional support association) groups and development meetings, with up to 100 participants (Table
2). CBRWs were generally well received within the community.
Targeted mobilisation of community figures was undertaken for six participants, including with a priest, government officials, an agricultural worker, health extension worker, edir leader and businessmen. All three community members interviewed had sacrificed time and money, but none perceived this as a hardship. Instead, giving support was portrayed as a gratifying experience, especially when improvements were seen.
“You feel happy when you help someone whose economy is below you. When you see improvement in the person you are helping, you will be satisfied. I am very glad since I have helped him. I got happiness.”
(male benefactor-7-E)
Assumption 1e: Traditional healers are willing to engage in CBR
Whilst priests and other religious leaders were identified, no traditional or religious healers were identified during resource mapping by CBRWs. Two CBR participants visited holy water sites, but these were located outside of Sodo district. There was therefore little potential for CBR engagement.
Is the RISE CBR intervention feasible?
Assumption 2a: Non specialists can be trained to deliver CBR for schizophrenia
Competence varied between CBRWs but overall was good. CBRWs completed the required assessments for all participants and undertook 91.7% of indicated modules, suggesting ability to select appropriate CBR components. Many participants considered CBRWs as experts, who were able to explain clearly and give constructive advice. Most CBR participants described the pleasant manner of the CBRWs, as well as appreciating their listening skills (“she asked me how I am feeling and I told her what I really feel” (caregiver-1-B)). Whilst some weaker areas were identified (problem-solving, risk assessment and response, and giving advice without lecturing), in general problems with competence were not a barrier to CBR delivery.
Assumption 2b: CBRWs can overcome logistical issues
Practical challenges included the long distances on foot between households and patchy public transport. Whilst these were largely manageable in the pilot, there were concerns this would be problematic when CBR was delivered on a larger scale. Problems with the phone network made it difficult to arrange home visits and supervision meetings. Despite this there was strong support for home visits from CBRWs and supervisors to encourage engagement, understand the family environment and give advice to the extended family.
Assumption 2c: Primary care staff are supportive of CBR
CBRWs were advised to accompany participants to primary care appointments around the time they conducted each of the three periodic CBR needs assessments. In the pilot, CBRWs accompanied participants to primary care a mean of twice over 12 months (range 1–3 times). Some participants appreciated support in discussing their treatment with health officers. CBRWs made fourteen referrals to the health centre, relating to eight participants, for medication reviews due to side effects, physical illness, relapse and suicide risk. Health centre staff described a productive working relationship with CBRWs, which enhanced the quality of facility-based care.
“I think [the CBRWs’] presence is useful for us to give better treatments to patients…We have a very good relationship…they directly come to us when they encounter problems and need our help.”
(health officer A)
Assumption 2d: Anti-psychotic medication is accessible
The majority of CBR participants reported that medication, particularly depot injection, was unaffordable.
“Now the main problem is the boy refuses to take the [oral] medicine and the injection is expensive and I am poor and a newcomer to the town, I have no one to help me...the medicine had [brought] improvement. Now my problem is the money to buy the medicine…The boy who was having improvement is going to be ill.”
(caregiver-8-B)
None of the four CBRWs who endeavoured to obtain the medication fee waiver were successful. Several participants reported frustration at medication being unavailable at the health centre or not being dispensed due to a lack of pharmacist, receipts, or because the caregiver was not present. All participants reported medication side-effects, most commonly drowsiness and weakness. These effects were frequently intolerable, particularly due to the impact on physical labour required for farm work. Side-effects resulted in interrupted adherence (particularly during harvest time) despite medication also conferring benefits, according to some participants. Some stopped once they felt well, or because they saw no positive impact. One CBR participant interrupted medication whilst at holy water, believing the two treatments were not compatible and another stopped medication altogether partly due to her family’s belief that the illness was caused by spirit possession.
Assumption 2e: Edir support will be available and sustainable
There were no examples of practical or financial support for CBR participants from edir (traditional support association) groups. CBR workers highlighted that this was an optional component of CBR that had not been emphasised in the training. Where involvement was attempted, there was a lack of firm interest or engagement from edir groups or in other cases people with schizophrenia or families did not wish to receive support from such organisations. Edir groups were however used as a vehicle for awareness-raising.
Can the RISE CBR intervention produce an impact and if so, how?
Assumption 3a: CBR can improve functioning in people with schizophrenia
Increased understanding of mental illness and human rights
Several participants reported an improved understanding of the symptoms, causes, and basic rights of people schizophrenia, and appreciation of the potential benefits of medication.
Increased family stability and care
Involving family members in CBR was seen as central to improving functioning. Several CBRWs noted that until disruptive and strained family environments were stabilised, improvements were difficult. In several instances CBRWs acted as mediators in family conflicts, leading to individuals being able to return home and therefore addressing basic needs of shelter and food.
“[the man with schizophrenia] was expelled from home because he kicked his mother….He was roaming the streets and was unable to stay at home because of his illness…But the family relationship improved significantly after I gave them the lesson from the module about interpersonal relationships in the family...he asked for her forgiveness and they started living together happily.”
(CBRW-8-E)
Most caregivers described strategies they had learnt to avoid aggravating their relatives, including communicating calmly, avoiding stressors and telling them of plans in advance. Some caregivers began facilitating self-care, for example by buying their relative soap. Caregiver burden scores reduced between baseline and six months, and then plateaued at 12 months (Table
4 and Additional file
8). Several caregivers described relief from constant worry. There was less need to supervise their relative meaning that daily tasks could be completed. Others welcomed the increased contribution to communal work.
Table 4
CBR participant outcomes
Outcome | Month 0 (n=10a) | Month 6 (n = 10) | Month 12 (n = 8) |
Clinical global impression (% normal/borderline) | 0% | 50% | 62.5% |
Discrimination (DISC-12 total) | 2 (0,4) | 0 (0,4) | 0 (0,3.5) |
Depression (PHQ9 total) | 10.5 (6,13) | 6 (2,11) | 3.5 (1.5,8.5) |
Alcohol use (AUDIT total) | 3.5 (0,7) | 4.5 (2,13) | 2.5 (0,5.5) |
Caregiver burden (IEQ) | 46 (37,61) | 26.5 (21,48) | 30.5 (19,41.5) |
Increased access to mental healthcare and anti-psychotic medication adherence
CBRWs showed participants where and how to buy medication, reminded them to attend follow-up and escorted them to appointments. Whilst initially there was optimism that this support alone would be sufficient, unaffordability of medication later emerged as an important barrier. In three cases, CBRWs addressed this by facilitating local benefactors or family members to purchase medication. Family members also learnt how to recognise and respond to relapse and to remind their relative to take medication.
Decreased relapse and symptoms
The proportion assessed as normal or borderline on the Clinical Global Impression rose from zero at baseline to 62.5% at endline (Table
4 and Additional file
8). Many participants felt that simply taking medication had made individuals ‘well’. Whilst a priest spoke of one man with schizophrenia gaining a ‘peaceful and free mind’ through treatment, for most CBR workers and caregivers being healthy was associated with a reduction in behaviours such as collecting objects, throwing stones, wandering away from home and talking to themselves. In many cases, improvements in symptoms led to better functioning. Median depression scores decreased over the pilot (Table
4 and Additional file
8). A ‘see-sawing’ effect was seen in two participants, with scores either much higher or lower at six months, compared to baseline and endline. It was difficult to directly tally these patterns with the participants’ accounts in qualitative interviews. Several people with schizophrenia reported feeling calmer or better able to cope with suicidal thoughts. This was attributed to improvements in the family environment or their functioning, or taking medication, but also to new coping strategies.
“
I used to get depressed when I sit at home. I used to cry and go outside the house. These things have reduced now. I have built my own house and have started making my bed and living like other people….When I was sitting alone at night, I used to think that it would be better if I hanged myself or threw myself into a river than live like this...But I have significant improvements after [the CBRW] advised me to go outside, watch TV and relax, when I feel low and bad ideas come to my mind.”
(man with schizophrenia-5-E)
Increased income
Participation in livelihood activities brought various benefits: improved self-esteem, reduced caregiver burden, a shift in community attitudes, but also income. Increased income in turn brought the ability to pay for medication, to support the wider family and to make financial contributions to community organisations.
“What I did for my patient was to make her do the job she was doing in the past. So, she started distilling araki [local gin] to cover her household expenses. Doing some work will help them generate income and they will be happy because they will be able to do whatever they want. They will not expect anything from anyone…the community will start thinking that they can take care of themselves and do some work.”
(CBRW-10-E)
Improved physical health and appearance
CBRWs had some successes in supporting physical wellbeing. Two people with schizophrenia were referred to the health centre for musculoskeletal problems that were preventing farm labouring. However one woman with schizophrenia, whose family were resistant to the CBRW’s efforts to facilitate treatment, ultimately died of an undiagnosed physical illness. Quantitative data indicated that three of the four participants who exhibited problem drinking cut down (Table
4 and Additional file
8). Whilst there were indications from the qualitative data that CBRW advice played a role in some cases, in one case the CBRW felt problem drinking had not reduced over time.
Increased social inclusion
There were reductions in reported discrimination for most participants (Table
4). At baseline, seven of the participants reported any experience of discrimination; by endline only the two participants who initially had the highest scores continued to report discrimination (Additional file
8). For some, non-participation in social activities was a personal choice but others reported social exclusion due to the stigmatising attitudes of community members. The priest described how a change in attitudes had reduced social exclusion.
“Before, [the man with schizophrenia] was considered to be crazy and he wasn’t allowed to participate in any activities in the community. But today he participates in activities in the community. They take care of him…He is healed and today he is healthy and is now working…he wasn’t invited to weddings, or attend funerals...However, today the community supports him, the community has embraced him.”
(priest-5-E)
Notably the account of the man supported by this priest differed from the priest’s own account. For this man, re-integration was problematic due to persistent negative perceptions from community members. According to this man, CBR had not assisted with the social exclusion he experienced; this was also reflected in his
DISC score, which remained high at the end of CBR, despite some improvement.
“The medication and the [CBR] education have helped me a lot in my recovery [...] But, I have to start a social life […] I don’t go to anyone’s funeral and no one will bury me if I die […] No one invites me because I am living alone and I don’t have social life […] I am lonely.”
(man with schizophrenia-5-E)
Decreased stigma and abuse
Some caregivers began treating their family members with dignity or ensuring they had sufficient food, and in one case physical abuse ended. There were two instances of physical restraint (of one and three days duration). In one case the CBRW resolved the situation by negotiating with the caregiver and encouraging access to treatment. One participant described learning strategies to deal with stigmatizing comments.
Increased self esteem and hope
Increased self-esteem and hope seemed to underpin sustained changes in functioning; whilst functioning – whether participation in work, social life or improved self care - fostered a feeling of self-worth. For some the experience of receiving support at all, and therefore feeling valued, appeared to have an independent influence on wellbeing. Often the knowledge that the illness could improve was transformational, whilst some CBRWs were great motivators. Self-esteem manifested in various ways including participants taking pride in their appearance and work, feeling equal to others, and being assertive.
“When he eats he wants to get good food…when he goes to parties he doesn’t accept leftovers, he wants good food and he wants to be seated and served like normal people. He says he is not less than anyone, he is fine.”
(caregiver-7-E)
Many felt that CBR had increased public understanding about the signs and treatability of mental illness. Several participants suggested that visibly improved functioning in people with schizophrenia was a turning point in changing attitudes. There was agreement that improved community attitudes can potentially impact on mistreatment and social exclusion. However, few participants, and no people with schizophrenia, provided concrete examples of awareness affecting inclusion. Several participants reported that awareness-raising meetings had led to local people with psychosis accessing treatment for the first time. There were four participants for whom CBRWs mobilized tangible community support. Support included provision of a house, food and medication; identification of employment opportunities; moral support; family mediation; advocacy for a medication fee waiver; a small business loan; and support with medication and social activities. Those providing support had minimal previous involvement with the CBR participant, which had been enhanced and formalized by CBR.
“I used to feel very sad when I saw [the man with schizophrenia] in the street…I used to give him some food or some small things and encourage him. I was giving him some unsustainable support…There was no fixed thing. I used to forget him and pass him. But now there is someone in the middle who can ask for him and arrange for us to meet.”
(benefactor-7-E)
CBRWs sometimes faced difficulties finding benefactors anywhere except in the wealthier urban areas, and sustaining support was problematic.
Assumption 3c: Family support groups are perceived to be useful
Only one sub-district set up a family support group, which ended after three meetings. The lack of a saving and loans element was not given as a reason for non- participation. Instead participants felt uncomfortable discussing personal issues or their relative was too ill to be left unattended.