Equitable access to integrated primary mental healthcare for people with severe mental disorders in Ethiopia: a formative study
© The Author(s). 2016
Received: 26 April 2016
Accepted: 21 July 2016
Published: 26 July 2016
The provision of mental healthcare through integration into primary care is expected to improve access to care, but not all population groups may benefit equally. The aim of this study was to inform delivery of a new primary care-based mental health service in rural Ethiopia by identifying potential barriers to equitable access to mental healthcare and strategies to overcome them.
A qualitative study was conducted as formative work for the PRogramme for Improving Mental healthcarE (PRIME), a project supporting delivery of mental healthcare integrated into primary care in a rural district in south central Ethiopia. In-depth interviews (n = 21) were carried out with stakeholders selected purposively from mental health service users, caregivers, community leaders and healthcare administrators. A focus group discussion (n = 12) was conducted with community health extension workers. Framework analysis was employed using an adapted version of the access framework developed for use in contexts of livelihood insecurity, which considers (1) availability, (2) accessibility and affordability. and (3) acceptability and adequacy dimensions of access.
Primary care-based mental healthcare was considered as a positive development, and would increase availability, accessibility and affordability of treatments. Low levels of community awareness, and general preference for traditional and religious healing were raised as potential challenges to the acceptability of integrated mental healthcare. Participants believed integrated mental healthcare would be comprehensive and of satisfactory quality. However, expectations about the effectiveness of treatment for mental disorders were generally low. Threats to equitable access to mental healthcare were identified for perinatal women, persons with physical disability, those living in extreme poverty and people with severe and persistent mental disability.
Establishing an affordable service within reach, raising awareness and financial support to families from low socioeconomic backgrounds were suggested to improve equitable access to mental healthcare by vulnerable groups including perinatal women and people with disabilities. Innovative approaches, such as telephone consultations with psychiatric nurses based in nearby towns and home outreach need to be developed and evaluated.
Neuropsychiatric disorders contribute to 7.4 % of the total global burden of disease . When considering years lived with disability, mental disorders make the second highest global contribution . Despite the substantial disability and high rates of premature death due to mental disorders, the current level of public policy attention and care access is extremely low, especially in countries of sub-Saharan Africa [2, 3]. Globally, it is estimated that 50 % of people with severe mental disorders remain untreated and the treatment gap in low-income countries (LICs) is as high as 90 % [4, 5].
In response to this high treatment gap, the World Health Organisation (WHO) has introduced the mental health gap action programme (mhGAP); a framework for scale-up of mental health services for selected priority disorders through integration into primary care . The mhGAP intervention guide is a contextually adaptable, evidence-based set of packages of care suitable for delivery by non-specialists in low resource settings.
Developing integrated services that are accessible to all requires rigorous understanding of the barriers experienced by disenfranchised sections of society. The concept of access to healthcare is complex as it incorporates factors beyond availability of the service . Poor living conditions, place of residence, history of previous access, low level of education, inequitable access to power and economic resources could be some of the social determinants of access to healthcare [8–11].
Ethiopia has a healthcare system focusing on disease prevention in the primary care setting . Healthcare in the country is characterised as under-resourced and, at the present time, can only be accessed by the majority of the population through out of pocket funding . Mental health conditions lead to increased financial stress as the condition causes chronic disability and requires long-term access to medications and consultations . Therefore, equitable access to mental healthcare in Ethiopia is complicated by poverty, weak infrastructure and the limited numbers of facilities providing mental healthcare, most of which are situated in or around big cities. Recent initiatives seek to expand access to mental healthcare through integration with primary healthcare [15, 16] but little is known about how equitable access to mental healthcare can be ensured.
The overall aim of this study was to inform the development of equitable and accessible mental healthcare integrated into primary care services for people with severe mental disorders in rural Ethiopia . Specifically, we sought to identify the potential barriers to equitable access to care to mental healthcare and how they might be overcome.
A qualitative study.
The study was conducted in Sodo district, one of the 15 districts in the Gurage zone of the Southern Nations, Nationalities and Peoples Regional state, located around 100 km from Addis Ababa. The total population of Sodo district is about 170,000 . Sodo district was selected because it is reflective of the broader agroclimatic, geographical and social dynamics of the country and is the location of the Programme for Improving Mental health care, a multi-country initiative to implement, evaluate and scale-up primary care-based mental healthcare [16, 17]. Sodo district neighbours Butajira, the site of longstanding mental health and public health research, thus providing an infrastructure from which to operate. The main inhabitants of the district are the Gurage ethnic group and most people are followers of Orthodox Christianity (97 %). Sodo district has diverse agro-ecological zones including highlands and lowlands, with an elevation of 1500 m above sea level. The district is characterised by difficult terrain, a lack of reliable means of transportation and limited reach of all-weather roads. Carts, motorbikes, lorries and minibuses are the only available forms of transportation, with no fixed departure time, stops, or defined routes. Transportation fares are mostly negotiable and subject to abrupt hikes particularly if the person traveling has a serious health problem, including mental illness, or if it is an emergency.
Mental healthcare context of the district
Historically, biomedical care for people with mental disorders has not been available in the Sodo district. Help for people with severe mental disorders has, therefore, either been sought from a psychiatric nurse-led out-patient clinic in the neighbouring district (30–50 km away) or from traditional and faith healing sites located within and outside the community [19, 20]. As part of PRIME, general primary care workers will be trained to deliver basic mental and neurological healthcare for priority disorders: psychosis, depression, epilepsy and alcohol use disorders .
Population and sample
The sample from this study was nested within the broader qualitative study conducted for the PRIME formative study, focusing on stakeholders from the community and district level administration . For community participants, inclusion criteria were communicated to the health extension workers (community health workers with 1 year training in preventive care), who then facilitated identification of representative participants from different segments of the community. As there was no mental health service in the district at the time of this study, the service user and caregiver interviews were conducted with people selected from the neighbouring district who were accessing care through a hospital based, psychiatric outpatient clinic. The neighbouring district shares similar socioeconomic and cultural characteristics with the study site.
Mode of data collection
One year training after completing grade 10 or 12
All rural residents, non-literate
Rural residents, non-literate
Traditional and faith healers
Herbalists, holy water attendants
4th -8th grade
District health office representative
In-depth interviews were transcribed in Amharic and translated verbatim into English. Data were analysed using OpenCode version 4.02, an open source programme to support management and analysis of qualitative data . Framework analysis [29, 30], an approach to qualitative data analysis used increasingly in the areas of healthcare and policy analysis, was employed during data collection and analysis. Codes from the data were generated and further categorised into the different dimensions of access based on a pre-existing framework (see additional file 2). MH did the initial coding of all the interviews and the FGD. CH reviewed lists of codes and checked consistency of codes against the data and the framework. MH and CH discussed, adapted the framework and agreed on the final codebook for analysis.
Sociodemographic characteristics of participants
Theme I: Availability
Most participants spoke of the current absence of a service in the district as one of the biggest barriers to accessing mental healthcare, affecting decisions about where to seek care and when to initiate help seeking. At present, only those with sufficient financial resources are able to access mental healthcare by travelling to distant places:
If treatment starts [in the district], I can’t explain how happier I would become. Instead of travelling to far places in search of treatment and spending too much money and lose their assets in the process, it would be very good if they are treated here. People go to Amanuel [a psychiatric hospital in Addis Ababa] and other places including holy water (tsebel) places like Shenkora….People travel to different countries, regions to receive treatments. 04_community elder
The plan to bring mental health closer to the community was expected to overcome the financial and logistical barriers associated with distant travel for many people:
…there is no service at the health centre level. Many people are affected by the problem because there is no treatment or counselling at the health centre level. Having the service at the local level is invaluable. Mental illness is a big problem that degrades people…..Someone who cannot afford to go to Addis Ababa for treatment will [be able to] access the service. 05_religious leader, Orthodox church
Participants suggested that making mental health services locally available would enhance the quality of life, functioning and productivity of people with severe mental disorders. It was also mentioned to reduce human rights abuses such as physical assualts and shackling. Restraining a person with mental illness, for example with chains, was reported to be a common response to the lack of accessible care. Participants also remarked that people in traditional healing places were mostly restrained when being brought to, or while attending care at traditional and faith healing sites.
In the absence of mental health services, participants reported that people tried different avenues to find solutions for their situations. Costs associated with seeking treatment from traditional healers, including payment for gifts, traditional medicines, travel expenses and other forms of contributions were reported to be much higher than would be incurred if people were able to access modern care.
Theme II: Affordability, Accessibility
Participants reported sets of interwoven potential barriers to access to mental healthcare in a primary care context. Among these were challenges with leveraging social support, the severity and persistence of illness and difficulty conveying a person with severe mental disorder. Reachability of the service in terms of geographic proximity to one’s area of residence was one of the key recurring themes across the interviews. Increased accessibility and better affordability of mental health services were said to result in better help-seeking behaviour. Shorter distance travelled was also said to increase affordability due to the decline in the indirect costs of treatment.
It was indicated that inability to pay for treatment or associated expenses is considered as one of the major potential barriers to accessing care:
“If the family is poor it is very difficult to get treatment. I guess it is clear. It is poverty. Unless it is financial problem who would ever like to keep his/her family at home with such a suffering? It is lack of money that hinders people from getting treatment”. 02_traditional healer
The other argument by some of the participants is that the provision of mental healthcare in the local setting would address affordability concerns. Establishing the service within reach implies reduction in the indirect costs of treatment such as transportation, meal and accommodation.
Theme III: Acceptability and adequacy
Excitement about the planned service was evident across the interviews. Previous encounters with mental health services and level of awareness about treatment of mental disorders were mentioned to be important predictors of acceptability. People with no previous experience of modern mental health services were said to have potential difficulty to accept health service-based care. Causal attribution of mental illnesses was underlined as an essential factor affecting help-seeking. The majority of participants considered poverty, thinking too much, anguish and adverse life events to be the causes of mental disorders. There was also a strong belief in the community that some mental illnesses were attributable to evil spirits or demonic possession.
“Some spirit that babbles as ‘I’m Satan, or I’m a magic spirit’, a spirit that makes them feel dizzy and mentally strained would go away”. 08_holy water attendant
The protestant church leader also confirmed this stating that some forms of mental disorders are caused by evil spirits and are healed only through prayer and exorcism. According to him, due to such overarching beliefs, people tend to seek care first at traditional healers and may not find healthcare-based treatment to be acceptable. The HEWs also emphasised that these beliefs were shared by majority of the population. However, the impact of having such beliefs on help-seeking is not discussed in the in-depth interviews.
Various explanatory models of illness were mentioned across all the community representatives. In some cases, it was likely that one person might hold more than one explanation as to how and why illness started. One’s fate, curse, wearing perfumes during the sun, worries about life/school and falling in love were some of the explanations given to cause mental disorders. It was reported that people who hold these explanatory models strongly believe that traditional healings are more suitable than modern treatments.
Although this could be partly linked with non-availability of modern treatment in the district, people tended to go to places as far as 300kms away from their residence to attend traditional healings. The HEWs focus group discussion also shed light into the importance of awareness of families and acceptability of services. How these two affect the decision where to seek care from is illustrated below:
There is awareness problem in the community. This means instead of coming to health centres, the community prefers to go to holy water [tsebel] and other places. They think that tsebel is effective than modern medication. If we start service for mental illness, this may have some good thing for our community. But as our health centres do not have medication, the community may not trust them and seek service. HEW_FGD
The decision to seek help from traditional healers could be related to lack of trust in modern medication or absence of any modern mental healthcare providers in the vicinity. Although the need for comprehensive healthcare was acknowledged by many, lack of awareness from the community’s side is presented as a potential barrier to access:
Health by itself is a manifold issue and mental health treatment is one of it. I don’t think our community would be against having these services. They’d prefer to have it near to them. But the thing is our community has its traditions, so a lot of work should be done. Awareness creation should address this. There are people who go through a lot of stress and lose their mind. So in light of redeeming these people’s lives it will be very essential to have these services and enabling the community to understand and utilize it. 10_preacher in protestant church
Another caregiver of a person with severe mental disorder also strengthened the above claim as:
For the first two years, we thought it was an evil spirit and sought for traditional help. Around the end of the second year, we took him to modern treatment…..13_Caregiver
Such attitudes were reported to be some of the potential barriers to access. The belief that mental illness is not curable contributes to the low priority given to modern medication. The health extension workers also mentioned that many families opt to seek care at traditional care providers first before they consider travelling to modern facilities.
The participants did not prioritise concerns related to the adequacy of a primary care-based service. Availability of the service within the community was perceived to encourage early access as people would get the opportunity to witness changes in the lives of those who had been treated. The decision to access services was said to be largely influenced by the success or failure of those who had previous experience with mental health facilities. The HEWs also indicated that success stories of those treated will wipe away doubts regarding effectiveness of modern care.
According to the community elders, the number of people treated by the programme and the impact of treatment on the lives of those treated would be considered to be the most important indicator of quality of care. Two of the religious leaders disclosed their fear that the quality of care could be compromised if the service was provided at the health centre level. This was also shared by another participant below:
From our experiences so far, when [services] are decentralised, we face problems with maintaining the quality. This may be in terms of the health professionals; the follow up. There are instances where they neglect their responsibilities. The person with a mental illness may not get the proper treatment. This is my concern. Such problems may be faced at this level. IV11_NGO representative 2
The above argument is based on the current lack of training and absence of psychotropic medications at the health centre level. Hence, referrals to the nearby psychiatric hospitals, supervision by trained psychiatrists and consultations with existing primary healthcare workers with better training in mental healthcare was recommended to enhance quality.
If there is a pregnant woman or if there is someone who is physically weak, accessing services may be difficult. If they do not have money, that will make it even difficult. If you do not have money, you can access nothing. It is not because the person is a woman or a man. The main thing is having money. If they do not have money, they cannot benefit from the service being provided. 05_religious leader Orthodox church
Different households have various problems. They may not be able to cover the treatment costs due to poverty. The other problem is that it is a long-term illness. People will get tired of you if you are ill for longer period of time. Your relatives could help you till you get well. But, people will get tired of you when you have an illness that stayed with you for years. Female service user
“As long as the service being provided is in government health centres, it is affordable for most people as the government also subsidizes it. We do not have that poor people who fail to access the service at health centre level”. 03_community elder
The above assertion was not endorsed by everyone. Some of the participants disclosed their fear that the cost of medication could keep some people away. Although primary care facility based services were believed to enhance affordability, it was stated that poverty poses significant burden especially when the condition causes chronic disability requires long-term care. Interview with the district health office head confirmed that the government has introduced fee waivers for community members who are considered ‘poorest of the poor’. Nevertheless, service users and caregivers reported that obtaining the poverty certificate (certificate declaring eligibility for fee waivers) is often a challenge or they still have to pay for some medications.
“I do not believe in giving the medication for free. It should consider the economic background of families. It will be effective this way. The community does not appreciate free medication. Even when we give them vaccinations for free, they would consider it effective when they spend some money.” HEW_FGD
Some of the HEWs however, disagreed saying that the whole package of treatment should be given for free. Nevertheless, majority of the FGD participants believed that complete abolition of fees would result in less regard to the effectiveness of the treatment.
I don’t think so [physical disability is a problem] because mentally ill people are brought to healthcare facility by other people in most cases. We can take this one as a factor that hinders them from coming to the service for example if you don’t have money for transport it is very difficult to take your ill relative to hospital. 07_NGO representative
I was breastfeeding when I first went for treatment. My neighbours were kind enough to breastfeed my baby who I left behind. I was mentally ill. I was not willing to breastfeed or take care of him. All breastfeeding women in my neighbourhood took turns breastfeeding my baby. But the baby did not survive because he was breastfed by other people and was also malnourished. Had there been treatment in the nearby, my baby would have survived. Female service user, 01
HEWs also underlined the challenges experienced by perinatal women. The HEWs training has contents that remarks pregnant women should not be given any medication throughout the pregnancy. As one of the participants stated, “We the HEWs prevent them from using any tablet during pregnancy. Therefore, they may possibly think taking tablets including those taken for treating mental illnesses are wrong”. There is a fear that lack of awareness of the HEWs on how mental healthcare delivery works in relation to pregnant women might create potential complications in access to care in this group.
If a woman suffers from psychosis or depression, both the community and her family may think that she should remain at home. They may think that it is costly to take her to treatment places. Therefore, they will put her in chain at home. They may think she should stay at home because staying at home does no harm to the woman or they may also take her to different worship places. They may go to tsebel places. Therefore, taking such alternatives may make treatment a difficult task. HEW_FGD
The above factors are believed to cause disproportionate representation of women, the economically poor and people with disabilities in those who did not access care.
Strategies to overcome barriers
The participants recommended the approaches and strategies detailed in Table 1 to overcome the potential barriers to accessing care.
We have learned that the absence of mental healthcare in the district contributed significantly to delayed help-seeking and non-engagement with care. The majority of participants indicated that families opt to seek traditional help for their member with mental disorder as indicated in a previous population-based quantitative survey .
In this qualitative study to inform mental health service planning in a rural Ethiopian district, the integration of mental healthcare into primary care was anticipated positively by stakeholders. Stakeholders maintained high expectations in terms of improving access to care, reduce delays in obtaining treatment and improving quality of life for people with severe mental disorders.
Affordability and accessibility
Affordability was seen as the main on-going barrier to accessible care, even when locally available, because of expenses associated with long-term treatment. Although the monthly costs might look insignificant, long-term care poses a significant financial burden on families in this subsistence farming community, particularly as their ability to leverage social support declines over the years . Healthcare planners tend to rely on Euclidean distance rather than taking into account the complexities of topography or the scarcity of means of transportation . Findings of this study elucidate that factors beyond straight-line distance define the perception of accessibility. For example, conveying the person to health facility poses a tremendous challenge when the person is acutely disturbed or where the carer is a female or physically weak.
In all of the interviews, it was said that accessibility of services is related to increased ability to pay due to reduction in indirect costs of treatment. In some of the interviews it was indicated that the service being available will increase acceptability since there will be success stories coming out from the service.
Interventions to address poverty and raise the living standards of families are essential to ensure equitable access to care for families experiencing financial challenges . For improved mental health outcomes, mechanisms to bring about improvement in clinical outcomes for persons with severe and persistent mental disorders should go parallel with economic interventions . Outreach programmes, community mental health awareness campaigns and clinics located in renowned places of traditional healing should be considered.
Acceptability and adequacy
Acceptability of the new service was considered a potential barrier due to differing attributions for mental health problems. Adequacy of a primary-care based service was not a priority concern. Although the importance of cultural beliefs often distracts planners, having the financial resources was repeatedly indicated to be the deciding factor for access. Nevertheless, given the poor transportation infrastructure in the district, experiences show that even those who are able to pay may not be able to access public transportation due to stigma and discrimination towards people with mental disorders.
The salience of sociocultural barriers appeared to have been eclipsed by barriers exclusively pertaining to financial access in the narratives of respondents. The extent to which this is truly the case can be evaluated empirically when PRIME makes biomedical mental healthcare affordable and accessible geographically.
The new model of integrated mental health in the primary care setting is likely to be important to address the issue of equitable access. The approach takes into account context and is sensitive to barriers to equitable access by identifying bottlenecks from the outset. Settlement patterns, configuration of health facilities and access to a reliable means of transportation are key to ensuring equitable access to mental healthcare.
Summary of barriers and strategies
Theme I: Availability
Absence of mental health services
Making the service locally available
Integration to primary care
Absence of psychotropic medications
Ensure availability of medications
Include psychotropic medications in the drug list
Theme II: Affordability and accessibility
Inability to cover treatment related costs
Providing cheaper treatment
Financial support to ‘poorest of the poor’
Subsidising mental health treatment
Longer distance travelled to access services
Establishing the service within reach
Facilitate emergency transportation
Plan outreach mental health service
Indirect expenses of seeking care
Interventions to improve household income
Theme III: Acceptability and adequacy
Causal attribution: attribution to some evil spirits
Involving HEWs in raising awareness and initiating discussions
Engaging religious leaders in awareness raising
Lack of trust in modern medication
Involving service users who recovered
Telling success stories of those treated
Lack of awareness (the belief that mental illnesses are not curable)
Engage traditional healers in educating the community
Amplify success stories from treatment
Engage service users who recovered in assisting HEWs in their awareness raising endeavours
High regard given to traditional healing
Train traditional healers on detection of core symptoms of mental disorders
Create referral linkage framework
Work with church leaders
Mainstream mental health contents in community conversations
Concerns about quality of the service
Supportive supervision by psychiatric nurses
The majority of participants did not endorse gender as an important barrier to access. Some of the participants dismissed the claim that women lack wherewithal to make adequate cash for treatment, even though previous studies have indicated low financial empowerment of women in rural Ethiopia . In our study, little was mentioned about the femininity of poverty with respect to access to financial resources. Nevertheless, the female HEWs emphasised the unique challenges that women are confronted with in when they try to access care with a focus on perinatal women. There is also evidence that perinatal women are at risk of discontinuing the treatment . Due to the limitations in training of primary care workers, the WHO mhGAP intervention guide recommends the referral of perinatal women to specialised providers . Nevertheless, there is a fear that this may result in perinatal women being unable to access care at all. Being referred to a hospital necessitates additional travel or accommodation costs which some of these women may not find affordable. To promote access in this group, innovative approaches like telephone consultations with psychiatric nurses might help.
Of the 22 in-depth interviews, only five were women. This is mainly because the patriarchal community structure where mainly the men hold majorities of the leadership positions. To understand the issues of women, we involved 12 female HEWs in the FGD as they work closely with women. We did not obtain feedback from our participants about the emerging findings with respect to our framework.
Understanding the barriers to access to mental healthcare in a primary care setting from the outset significantly enhances the focus on equity. The approach helps to identify vulnerable groups like people with disabilities and perinatal women who might experience unique challenges to access care. Establishing an affordable service within reach, raising awareness and financial support to families from low socioeconomic backgrounds were suggested to improve equitable access to mental healthcare in this group. The introduction of innovative approaches such as telephone consultations with psychiatric nurses based in the nearby towns was also mentioned essential. We hope that the next step would be to evaluate whether the programme succeeds in providing equitable access to mental healthcare from the dimensions of treatment initiation, retention in care and benefit from care.
FGD, Focus Group Discussion; HEW, Health Extension Worker; mhGAP, mental health Gap Action Programme; NGO, Non-Governmental Organisation; PRIME, PRogramme for Improving Mental health carE; WHO, World Health Organisation
The authors declare that they have no competing interests.
MH and CH conceived the idea. MH drafted the manuscript. All authors contributed to the draft manuscript, read the final version and approved it.
Ethics approval and consent to participate
The study was approved by the Institutional Review Board of the College of Health Sciences of Addis Ababa University. Study was explained to participants and they were given an Amharic copy of the information sheet before they were asked to sign an informed consent. Service users who were found to be in need of care were referred to the nearby psychiatric nurse-led clinic in Butajira hospital.
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