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Background: A primary rationale for scaling up mental health services in low and middle-income countries is to address human rights violations, including physical restraint in community settings. The voices of those with intimate experiences of restraint, in particular people with mental illness and their families, are rarely heard. The aim of this study was to understand the experiences of, and reasons for, restraint of people with schizophrenia in community settings in rural Ethiopia in order to develop constructive and scalable interventions. Methods: A qualitative study was conducted, involving 15 in-depth interviews and 5 focus group discussions (n = 35) with a purposive sample of people with schizophrenia, their caregivers, community leaders and primary and community health workers in rural Ethiopia. Thematic analysis was used. Results: Most of the participants with schizophrenia and their caregivers had personal experience of the practice of restraint. The main explanations given for restraint were to protect the individual or the community, and to facilitate transportation to health facilities. These reasons were underpinned by a lack of care options, and the consequent heavy family burden and a sense of powerlessness amongst caregivers. Whilst there was pervasive stigma towards people with schizophrenia, lack of awareness about mental illness was not a primary reason for restraint. All types of participants cited increasing access to treatment as the most effective way to reduce the incidence of restraint. Conclusion: Restraint in community settings in rural Ethiopia entails the violation of various human rights, but the underlying human rights issue is one of lack of access to treatment. The scale up of accessible and affordable mental health care may go some way to address the issue of restraint. Trial registration:Clinicaltrials.gov NCT02160249Registered 3rd June 2014.
The study was conducted in Sodo district and the adjacent districts around Butajira town, in the Gurage administrative zone of the Southern Nations, Nationalities and Peoples’ Region of Ethiopia. Sodo is 100 km from Addis Ababa and Butajira is 130 km away. The majority of the population live in rural areas. The topography is variable, encompassing both cool mountainous areas and lowlands with higher temperatures. Most of the population work as subsistence farmers and live in mud and straw houses. Around 51% of the population is estimated to be literate [27]. In the Butajira area, the majority are Muslim, whilst in Sodo district the majority are Orthodox Christian. Biomedical care, traditional healers and holy water are utilised for mental health problems in this area. Holy water, which is believed to have curative properties, is accessed by both Christians and Muslims at specific sites associated with the Ethiopian Orthodox Church. There are various other types of traditional healers, ranging from herbalists to tanqway (sorcerers), who use tinctures, animal sacrifices and rituals, and debtera, who are priests believed to have magical powers [28]. There is a psychiatric nurse-led outpatient clinic in Butajira hospital, through which the participants with schizophrenia and caregivers were identified in this study. At the time the study was conducted there were no mental health services in Sodo district. People with mental health problems in this area either had to attend the Butajira clinic or otherwise travel 100 km to Ammanuel psychiatric hospital in Addis Ababa. Sodo district is the setting for the Ethiopian arm of the PRogramme for Improving Mental healthcarE (PRIME) project. PRIME is a five-country research consortium that aims to generate evidence on the integration and scale up of mental health into primary and maternal care settings [29]. As part of PRIME a scalable mental health care plan was developed and implemented in Sodo district across community, facility and district healthcare levels [30]. From July to September 2013, five focus group discussions (FGDs) with a total of 35 participants and 15 in-depth interviews (IDIs) were conducted with people with schizophrenia, their caregivers, community and religious leaders, health extension workers (community health workers), community-based rehabilitation (CBR) workers and primary care staff (see Table Table1).1). The primary aim of the IDIs and FGDs was to determine the acceptability and feasibility of CBR for people with schizophrenia in this setting. This formed part of the Rehabilitation Intervention for people with Schizophrenia in Ethiopia (RISE) project. The results of this formative work have been published previously [31]. A secondary aim of the IDIs and FGDs was to explore the issue of restraint in community settings, with a view to understanding the best way to intervene. Hence, the topic guides covered (i) current problems and needs (ii) experiences or awareness of restraint and (iii) potential ways to address restraint. IDI and FGD participants Primary care staff and health extension workers were identified through Sodo district health bureau. CBR workers and supervisors were employees at the Rehabilitation And Prevention Initiative against Disabilities (RAPID) project in Adama, which supports children with disabilities. People with schizophrenia and their caregivers were identified through the Butajira psychiatric outpatient clinic. Community leaders were either members of the PRIME community advisory board [30] or were identified through PRIME field workers. Participants were selected purposively to ensure a spread of gender, work experience, type of community leader and functional status of people with schizophrenia. The participants were invited by telephone or face-to-face and all those approached agreed to take part. All participants received modest remuneration (equivalent to US$3) for their time and transportation costs. The IDIs and FGDs were conducted in Amharic by an Ethiopian psychiatrist (ST) and an Ethiopia PhD student with a psychology MSc (KH). Both had experience in conducting IDIs and FGDs with people with schizophrenia and their caregivers [32–34]. No relationship between the researchers and participants existed in advance. The interviews were conducted at local health centres and private offices. IDIs lasted between 40 and 60 min and FGDs lasted between 60 and 120 min and all were audio-recorded. LA observed the interviews and discussed the content with the interviewers immediately after each one, making hand written notes. The audio-recordings were transcribed in Amharic, and then translated into English. If the translation was ambiguous or included cultural references that required interpretation, LA discussed and clarified the meaning with ST and KH. A thematic analysis of the IDIs and FGDs was conducted, using NVivo for Mac software to manage the data. Thematic analysis is a method which sits between a realist approach (in which experiences are described) and a constructionist approach (where experiences are seen to reflect wider discourses operating in society) [35]. An inductive (data driven) approach to identifying themes was employed; we did not consider the data with an a priori coding frame [35]. LA first familiarised herself with all transcripts, noting initial impressions. Two transcripts were independently coded by LA and ST, and a meeting was held to discuss differences and make minor adjustments to the coding scheme. Once a consensus was reached, all manuscripts were indexed by LA using the final coding scheme developed, but also adding additional codes as required by the data. LA collated the codes into potential themes and sub-themes, through seeking repeated patterns of meaning across the dataset [36]. LA created a map of how the themes were related, which was discussed and finalised with ST. Themes and sub-themes were reviewed by checking whether the collated quotes for each theme were coherent, and collapsing or expanding sub-themes as required. LA then reread the full transcripts to check the final thematic framework adequately reflected the totality of the data collected. We summarised and interpreted the themes using a contextualist approach, in that we retained focus on the data and the reported experiences of individuals, but we tried to understand how the broader social context, for example living conditions and access to healthcare, shaped those experiences [35, 37]. Associations between themes and patterns relating to participant characteristics were noted, for example we compared the reports of people with schizophrenia against those of caregivers. Quotes were selected by LA to exemplify each theme and sub-theme. We were able to examine the validity of emerging themes, and supplement quotations to support themes, using a second qualitative dataset obtained for the PRIME project. The PRIME dataset included 13 IDIs and five FGDs conducted with similar stakeholders to the RISE study [38]. The primary aim of the PRIME qualitative study was to inform development of the district mental health care plan, the results of which have been published elsewhere [30, 39]. In relation to this aim the topic guide enquired about the experience of physical restraint and possible approaches to address restraint. Ethical approval was obtained from the Addis Ababa University College of Health Sciences Institutional Review Board (reference 039/13/PSY) and from the London School of Hygiene and Tropical Medicine Research Ethics Committee (reference 6408). Written informed consent, or a witnessed thumbprint for those who were illiterate, was obtained from all study participants. Prior to conducting the interviews with people with mental illness, capacity to consent to participate in the study was evaluated by a psychiatrist. Consent for publication was obtained from all participants.
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