RESEARCH REPORT
Integrating mental health services into primary health care in South Sudan: a case study
ANNE DE GRAAFF HEALTHNET TPO/DUTCH CONSORTIUM FOR REHABILITATION DECEMBER 2015
Acknowledgements
I would like to express my gratitude to several people who were – in different ways – involved in this study project.
First – and most – of all, I would like to thank those people in South Sudan who were willing to take part in the study. Your contributions are reflected in this report, and therefore, without your help, this study would not have been possible. So to all of you: Shokran!
Second, I would like to thank the HealthNet TPO and DCR teams. Especially “team Leopards” for data-collection: Charles Kon, Ociti Michael, Madhieu Thiep, Marko Mayen, Michael Lopia, Geofrey Loku, Isaac Uchalla, and Taban Samuel – thank you for making the field trips so enjoyable. Also to James Maputo and Justin Madut for driving us around in Jur River County: Kirii.
Special thanks to “Those of Adiga”, the county development officers who introduced me to the communities and helped organizing the field trips and translating interviews. And to Richard Koma and Horasio Kamulete who spent many hours working with me on the surveys. Furthermore, Boniface Duku, Godfrey Kiyimba, Aidan Goldsmith, and all other colleagues in Wau, Juba and Amsterdam: it was a great pleasure working with you. Lastly, I would like to express my special appreciation to Martijn Vink, my supervisor at HealthNet TPO.
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List of abbreviations
CHD County Health Department CHW Community health worker CMW Community midwife CO Clinical officer CSO Civil society organization CSS Community systems strengthening DCR Dutch Consortium for Rehabilitation DHIS District Health Information Software FBO Faith based organization FGD Focus group discussion HDP Health development partner HFC Health facility committee HNTPO HealthNet International/Transcultural Psychosocial Organization HMIS Health Management Information System HPGSS Health Policy for Southern Sudan (2006-2011) HSB Health seeking behaviour HSDP Health Sector Development Plan (2012-2016) IC Informed consent IMC International Medical Corps JTH Juba Teaching Hospital LMICs Low- and middle-income countries MHPSS Mental health and psychosocial services PHC Primary health care PHCC Primary health care center PHCU Primary health care unit PoC Protection of civilians PTSD Posttraumatic stress disorder SSHP South Sudan Health Policy (2006-2011) SSP South Sudanese Pounds (1 SSP ≈ €0,30 or $0,34 at time of research) WBeG Western Bahr el Ghazal WHO World Health Organization WTH Wau Teaching Hospital
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List of contents
Abstract ...... 5 Chapter 1: Background of the study ...... 6
1.1 SOCIO-POLITICAL CONTEXT OF SOUTH SUDAN ...... 6
1.2 PRIOR RESEARCH ON MENTAL HEALTH ...... 7
1.3 HEALTH SYSTEM CONTEXT ...... 8
1.3.1 ORGANIZATION OF THE HEALTH SYSTEM ...... 8
1.3.2 MENTAL HEALTH POLICIES ...... 9
1.3.3 MENTAL HEALTH ORGANIZATION ...... 10
1.4 COMMUNITY PERCEPTIONS ON MENTAL HEALTH ...... 11
1.5 RESTRICTING FACTORS FOR MENTAL HEALTH CARE USAGE ...... 12
1.6 POSITIONING THE RESEARCH ...... 12
1.7 STUDY RATIONALE ...... 13 Chapter 2: Conceptual framework ...... 15
2.1 WHO’S DEFINITION OF MENTAL HEALTH ...... 15
2.2 CROSS-CULTURAL UNDERSTANDING OF MENTAL HEALTH ...... 15
2.3 MENTAL HEALTH GAP ...... 16
2.4 MHGAP PROGRAMME ...... 17
2.5 LIMITATIONS OF THE MHGAP PROGRAMME ...... 18
2.6 DEFINING THE HEALTH SYSTEM ...... 18 Chapter 3: Study’s focal point: Aims and objectives ...... 19 Chapter 4: Methodological framework ...... 21
4.1 RESEARCH METHODS ...... 21
4.2 APPLICATION OF RESEARCH METHODS PER RESEARCH QUESTION ...... 24
4.3 METHODS OF DATA ANALYSIS ...... 25
4.4 UNIT OF ANALYSIS AND SAMPLING ...... 25
4.5 LIMITATIONS ...... 27
4.6 ETHICAL CONSIDERATIONS ...... 28
4.7 RESEARCH LOCATION ...... 28 Chapter 5: Results ...... 30
SECTION 1: AVAILABILITY OF MENTAL HEALTH SERVICES ...... 31
5.1.1 PILLAR I: PUBLIC HEALTH SYSTEM ...... 32
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5.1.1.1 AVAILABILITY OF MENTAL HEALTH SERVICES IN PRIMARY HEALTH FACILITIES ...... 32
5.1.1.2 MENTAL HEALTH SERVICES IN HIGHER LEVELS OF PUBLIC HEALTH CARE ...... 35
5.1.2 PILLAR II: NGO/FBO HEALTH SYSTEM ...... 36
5.1.3 PILLAR IV: INFORMAL TREATMENT OPTIONS ...... 37
5.1.4 COMMUNITY RESPONSE: SELF-CARE AND THE TRADITIONAL COURT ...... 39
SECTION 2: ACCESS TO MENTAL HEALTH CARE ...... 41
5.2.1 DEMAND ...... 41
5.2.2 PERCEPTIONS ON MENTAL HEALTH SEEKING BEHAVIOUR ...... 45
5.2.3 CONSTRAINTS TO ACCESS MENTAL HEALTH CARE ...... 49
SECTION 3: FEASIBILITY OF THE INTEGRATION OF MENTAL HEALTH CARE ...... 51
5.3.1 PERCEIVED CHALLENGES ...... 51
5.3.2 PERCEIVED OPPORTUNITIES ...... 53 Chapter 6: Discussion and conclusion ...... 56
6.1 CONCLUDING REMARKS ON FINDINGS ...... 56
6.1.1 AVAILABILITY ...... 57
6.1.2 ACCESSIBILITY ...... 58
6.1.3 FEASIBILITY ...... 59
6.2.1.1 LOWEST LEVELS OF CARE: INFORMAL COMMUNITY CARE AND SELF-CARE ...... 61
6.2.1.3 POLICY ...... 63
6.3 RECOMMENDATIONS FOR FURTHER RESEARCH ...... 64
6.4 CONCLUDING REMARKS ...... 65 Bibliography ...... 66 Appendix A: Dutch Consortium for Rehabilitation ...... 70 Appendix B: HealthNet TPO ...... 71 Appendix C: Health Facility Survey ...... 73 Appendix D: Pharmacy survey ...... 77 Appendix E: Health Seeking Behaviour survey ...... 78 Appendix F: Interview guide for semi-structured interviews ...... 82 Appendix G: Overview health facilities Jur River County ...... 84 Appendix H: Consent form ...... 85 Appendix I: Overview of respondents ...... 87 Appendix J: Demographics overview (health seeking behavior survey) ...... 89
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Abstract
After decades of war, South Sudan became an independent state in 2011. Today, the country still suffers from political instability, with the most recent outbreak of violence in 2013. Although the war has left an epidemic of mental illness, the South Sudanese health system is equipped with few resources to treat it. There is limited research to mental health (care) in South Sudan. This study was undertaken as part of the DCR program in January-March 2015 to inform member organization HealthNet TPO and other organizations and agencies for further mental health programming. HealthNet TPO aims to improve (access to) mental health services in, amongst other regions, Jur River County. This study explored opportunities and challenges for integrating mental health care at the community level, addressing the research question: How can we efficiently integrate mental health services into primary health care in Jur River County? Three themes are central in this report: 1) availability of mental health care services, 2) accessibility of these services for inhabitants of Jur River County, and 3) feasibility of integrating mental health services into primary health care.
This report is a case study of Jur River County, a county in Western Bahr el Ghazal state. Data was gathered through (semi-structured) interviews (N = 18), focus group discussions (N = 10), household survey (N = 475) with policy makers, health care providers and (other) members of the community. Other methods used included document analysis and participant observation. The study showed that the treatment gap is large, especially for inhabitants of rural areas such as Jur River County. Mental health car is disproportionately skewed towards the capital, with very restricted treatment options for mental health problems in the region of Jur River County. Access is constrained by structural and attitudinal factors, such as the lack of transportation and stigma around mental illness. According to stakeholders, perceived challenges to integrate mental health problems at the community include low political commitments, shortage in human capacity and low mental health literacy. Perceived opportunities concern the potential benefits of training, psychotropic drug delivery, presence of supporting community structures and (strengthening) the link between formal and informal health systems. Recommendations for HealtNet TPO and other organizations and agencies working on psychosocial and mental health programming are made with reference to the findings of this report.
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Chapter 1: Background of the study
The first part of this chapter provides background information on South Sudan, its health system and prior research on mental health related to southern/South Sudan. The second part describes the background of this study and its position within the DCR programs.
KEY POINTS For decades, South Sudan has been affected by armed conflicts, leading to millions of people killed and many more displaced within and outside South Sudan. South Sudan’s political structure is subdivided into national, state, county, payam, boma, and village-level authorities. The health care system is organized around four main pillars: the public health system, the NGO/FBO run health system, the private health system, and the traditional health system. A prior situational analysis has shown that more specialized levels of care are localized in Juba Teaching Hospital and in the in-patient clinic inside Juba prison. There is a lack of research on mental health in South Sudan.
1.1 SOCIO-POLITICAL CONTEXT OF SOUTH SUDAN
After more than 20 years of civil war South Sudan became the world’s youngest independent state in 2011 (LeRiche & Arnold, 2012). During this war, which originated in the 1955-1972 war between the north and south of the former ‘Sudan’, almost 2 million people were killed by violence, disease and starvation. Another 5 million people were forced to flee their homes, of which approximately four million people were internally displaced and one million people searched for refuge in camps and cities in neighbouring countries (Roberts et al., 2009). Since the comprehensive peace agreement (CPA) in 2005, SPLA soldiers have started to demobilize and the majority of the refugees have returned to resettle (Roberts et al., 2009). However, the CPA did not call a halt to enduring conflicts at the Sudan-South Sudan border and internal conflicts (LeRiche & Arnold, 2012). The last violent outbreak was on 15 December 2013, in which there was an armed confrontation between president Salva Kiir’s army officers and soldiers loyal to ex-deputy Riek Machar. During the first months of the crisis up to 873,800 people had been displaced and thousands of people were killed (WHO, 2014; ACAPS, 2014). Jonglei, Unity and the Upper Nile states were among the most affected states. Jur River County was one of the few counties that were not directly affected by the last wave of armed violence (WHO, 2014). However, indirectly the area was affected by the violence outburst, for example by hosting internally displaced people from other counties. Through years of war and deprivation of basic resources the country has extremely high health needs (Roberts et al., 2009). To illustrate, South Sudan started its year of independence having one of the world’s highest rates for maternal and infant mortality (Mozynsky, 2011). In 2004 there were an estimated 82 to 100 doctors in the whole of South Sudan, which meant an average of one doctor for every 70.000 to 100.000 people (Roberts et al., 2009; Wakabi, 2006).
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1.2 PRIOR RESEARCH ON MENTAL HEALTH
Research has shown that rates of mental illness are much higher among populations that have experienced war, especially rates of posttraumatic stress disorder (PTSD) and depression (De Jong, Komproe, Van Ommeren, 2003). The WHO estimate that rates of common mental disorders double in the context of humanitarian emergencies from a baseline of about 10 percent to 20 percent (www.who.int, consulted on 15 Dec 2014). People with severe mental health disorders are especially vulnerable to violence, poor physical health and substance abuse (Roberts et al., 2009; Saraceno & Dua, 2009). Additionally, two studies in post-conflict areas found that mental distress was negatively associated with people’s attitudes towards reconciliation and other ethnic groups, and positively associated to feelings of retribution (Pham, Weinstein & Longman, 2004; Vinck, Pham, Stover & Weinstein, 2007). A recent study among IDPs from Abyei, a contested area on the Sudan/South Sudan border, of which 37.8 percent met the criteria for PTSD, showed that the majority of the respondents had a negative attitude towards reconciliation (López & Spears, 2015).
Psychopathology among refugees and internally displaced persons (IDPs) is often understood as resulting from the acute stressor of war. However, in this context psychopathology is merely the response to enduring, contextual stress that precedes and follows conflict situations (Porter & Haslam, 2005). Psychopathology can be significantly remediated by factors such as materially secure conditions (e.g., economical opportunities and permanent private accommodation) and the socio- political context (e.g., refugees and IDPs from conflicts that remained ongoing suffered more from mental health issues than those from conflicts that had been resolved; Porter & Haslam, 2005). Furthermore, mental health and poverty are closely related and interact in a vicious negative cycle. People living in poverty have an increased risk of developing mental illness, and in turn mental illness has such disabling effects, which impair people’s ability to search for and sustain productive employment (Saraceno & Dua, 2009). Despite the direct relation between mental health and poverty, and between mental health and other determinants of wellbeing, mental health is excluded from the Millennium Development Goals (Saraceno & Dua, 2009; Global Mental Health Group, 2007).
Mental health assessments in South Sudan or among South Sudanese refugees also indicated elevated rates of distress. A mental health assessment that took place in Juba in 2007 presented rates of 36.2 percent for PTSD and 49.9 percent for depression (Roberts et al., 2009).1 In addition to elevated PTSD rates, a 2010 mental health assessment also showed that trauma and socio-economic disadvantage was associated with higher rates of other anxiety disorders (i.e., panic disorder and generalized anxiety disorder). Another study conducted during the civil war in 2000 showed PTSD rates of 48 percent for South Sudanese residents and 46 percent for South Sudanese refugees living in Uganda (Karunakara et al., 2004).2 Furthermore, suicidal ideation was assessed amongst a small group of SPLA soldiers in the cities Juba, Torit and Aweil (Winkler, 2010). Fifteen percent of the former SPLA soldiers reported having suicidal thoughts or thoughts of self-harm. The main reasons
1 PTSD was measured using the Harvard Trauma Questionnaire, depression was measured using the Hopkins Symptom Checklist-25 (HSCL-25). 2 PTSD was measured by the Posttraumatic Stress Diagnostic Scale (PDS) on the basis of DSM-IV criteria, an often used questionnaire in North America and Europe. Back-translations were made to Lugbara (Ugandan respondents) and Arabic (Sudanese respondents).
7 given for their suicidal thoughts were poverty and medical concerns or pain (Winkler, 2010).3 Despite the urgent need for mental health provision, health services are very limited (e.g., IMC, 2013). Although studies indicate increased levels of mental disorders, all research was conducted before the internal conflict outbreak in December 2013. There is no recent data available from past year’s war. Furthermore, research has been very limited as a result of the country’s instability, and has only taken place in some parts of South Sudan.
1.3 HEALTH SYSTEM CONTEXT
Health provision in South Sudan merely relies on (I)NGOs, health development partners (HDPs), faith based organization (FBOs), and the private sector (website MoH, consulted on 27 Nov 2014). The MoH describes four pillars of the health system: 1) public health system, 2) private health system, 3) NGO/FBO health system, and 4) traditional health system. In this section the structure of South Sudan’s health system will be discussed.
1.3.1 ORGANIZATION OF THE HEALTH SYSTEM
South Sudan’s health care structure consists of different levels of health facilities that correspond with the way the country is divided into different authorities (HSDP, 2012). On a national level there are three teaching hospitals, present in the cities Juba, Malakal, and Wau (HSDP, 2012). Teaching hospitals aim to target a population of 500,000 people and are responsible for secondary and tertiary health care (HSDP, 2012). The Ministry of Health (MoH) is responsible for the three teaching hospitals (HSDP, 2012).
South Sudan’s territory is divided into ten states. The states hold populations ranging from 333,431 inhabitants in Western Bahr el Ghazal to 1,358,602 inhabitants in Jonglei, according to the 2008 Population and Housing Census (NBS, 2011). On the level of the state there are state hospitals, each having a target population of 500,000 people. The states are further divided into 79 different local government authorities, referred to as ‘counties’ (HSDP, 2012). County hospitals serve on this level and have a target population of 300,000 people. The State Ministry of Health (SMoH) and the County Health Departments (CHDs) are responsible for primary health care services on the levels of the state and the counties respectively (HSDP, 2012). In total there are 7 state hospitals and 27 county hospitals (HSDP, 2012), so in reality the hospitals’ target populations are much larger, covering a total population of 8.26 million people.
The counties are further divided into payams, which consist of a number of bomas. Bomas are the lowest administrative authority and consists of a number of villages. The County Health Departments (CHDs) are responsible for the management of primary health care services for the payams, bomas and villages. On the level of the boma there are primary health care units (PHCUs) which deliver basic primary care to a target population of 15,000 people. The main staff are community health workers and community midwifes who are residents of the area. The units are opened 8 hours a day for 5 days a week (MoH, 2011). The units can refer patients to primary health care centers (PHCCs) that
3 Suicidal ideation was measured using the scale for suicidality and substance abuse from the M.I.N.I. This diagnostic instrument had undergone cross-cultural testing and validation in Northern Uganda.
8 function on the level of the payams. Following the guidelines of the HSDP, a PHCC targets a population of up to 50,000 people. It houses trained medical personnel, such as certified nurses, and should be open 24hrs a day for the whole week. Country wide there are 792 PHCUs and 284 PHCCs (IMC, 2013). Jur River County, Western Bahr al Ghazal, hosts a community hospital, a military hospital, 7 PHCCs and 29 PHCUs, of which 2 non-functional due to lack of staff or infrastructure (HealthNet TPO, 2015). Each boma with a health facility has a health (facility) committee that consists of approximately 10 elected village representatives and a community health worker (CHW). On the level of the village there are home health promoters. Both the health facility committees4 and the home health promoters serve as a bridge between the community and the health facilities and inform communities about health issues (i.e., awareness-raising and community mobilisation).
1.3.2 MENTAL HEALTH POLICIES
The Republic of South Sudan does not hold a mental health act (IMC, 2013). Before independence mental health formed an integral part of Southern Sudan’s public health, as stated in the Health Policy for the Government of Southern Sudan 2006-2011 (HPGSS; MoH Government of Southern Sudan, 2007). In this first policy the Ministry of Health (MoH) stated to work on the development of an integrated system of mental health care support services, with an emphasis on the integration of mental health services at the level of the community. In 2011 a draft was written for a mental health strategy by the WHO (Murthy, 2011 as cited in IMC, 2013). Based on the HPGSS the Health Sector Development Plan 2012-2016 (HSDP, 2012) was developed. It comprises South Sudan’s current health sector strategy and was refined in consultation with stakeholders such as civil society organizations (CSOs), (I)NGOs, and multilateral and bilateral agencies (HSDP, 2012). No explicit link to mental health is made in this plan. However, planned actions have been defined in the Policy Framework 2013-2016 (MoH, 2013). These actions include the development of trained cadres in psychiatry and mental health counselling, the draft of a strategic plan for mental health, the establishment of trauma-counselling centers, awareness raising on mental health issues, ensuring political commitment, the establishment of mental health care at primary, secondary, and tertiary levels, the identification of vulnerable populations, collaboration with other sectors to promote mental health and prevent mental disorders, and the promotion of research into the causes of mental health disorders (MoH, 2013). However, mental health is only shortly mentioned in the basic package of health services (BPHS, 2011) and it is unclear to what extent these have been implemented or what has been achieved. Table 1 presents an overview of the service norms, as outlined in the BPHS (2011), of mental health for four institutions of care: health care at the level of the village, primary health care unit (PHCU), primary health care center (PHCC) and county hospital (CH). In the next paragraph I will discuss the status of its implementation.
4 HPF uses the term ‘health management committee’ for health facility committees.
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Table 1. Service Norms for Four Levels of Mental Health Care (table derived from BPHS, 2011) Non-communicable diseases: Mental Health Boma Payam County Village (PHCU) (PHCC) (CH) Mental health education and awareness Case detection Anxiety disorders Refer follow up (e.g. post-traumatic stress-; panic disorder) Depression: Refer follow up identification and bio-psychosocial management Epilepsy: Refer follow up identification and treatment Psychotic and psychiatric cases: Refer follow up bio-psychosocial management Mental retardation: identification, education to parents Community based care and rehabilitation incl. support groups Inpatient treatment refer + refer Reporting Monitoring and supervision
Additionally, the ‘Prevention and Treatment Guidelines for Primary Health Care Centers and Hospitals Clinical book’ contains a chapter on psychiatry, including psychosis, depression, anxiety disorders, PTSD and alcohol dependence (MoH, 2006). Another guide exists for the PHCUs (to assist community health care providers and mother and child health care providers in prevention, treatment, or referrals), but does not include mental health (MoH, 2005). However, at the moment of study the Mental Health Platform (which will be discussed in section 1.6) was in the process of drafting a Mental Health Strategy as a first step towards the development of a Mental Health Policy.
1.3.3 MENTAL HEALTH ORGANIZATION
The WHO has developed a service organization pyramid for an optimal mix of mental health services (Figure 1a). With this pyramid, the WHO argues that, mental health needs should be addressed by more than a single service setting and that these services should be decentralized. Self-care forms the lowest level of the pyramid, in which individuals manage their own problems, or with the help of their direct social environment. With each higher level individuals become more engaged with professional assistance: the second level is informal community care and is not part of the formal health and welfare system (e.g., traditional healers). Third, primary care, that offers basic services (e.g., identification, counselling or referral). The fourth level includes community mental health services (e.g., day centres, rehabilitation services, mobile crisis teams, etc.) and psychiatric services in general hospitals (e.g., 24-hour access for acute cases, or, if necessary, hospitalization). The highest level concerns long-stay facilities and specialist services offered by highly specialized health care providers such as psychiatrists and psychologists. The highest level of care demands high health care costs but is the service least needed. With each level lower in the pyramid, costs are lower and quantity of services needed is higher (WHO, 2005).
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A situational analysis by the International Medical Corps (IMC) of mental health provision in South Sudan resulted in the following pyramid (Figure 1b; IMC, 2013). According to this pyramid, mental health care is centralized on the level of psychiatric services in general hospitals (i.e., Juba Teaching Hospital). It furthermore illustrates the gaps in care provision, as there is no (formal) mental health care at lower levels of the pyramid. Nationally, there is no psychiatric hospital, so the top level (i.e., highly specialized care) of the pyramid is absent (IMC, 2013). However, severe mentally ill people can be referred to the psychiatric unit located within the prison in case they form a threat to themselves or to others (IMC, 2013; Ashok & Ashok, 2014). Juba Teaching Hospital is the only public medical facility in the country that hosts both an inpatient and outpatient psychiatry unit. In 2013 it was observed that the department had a capacity of 12 beds, one psychiatrist, one psychologist, and six nurses (IMC, 2013; Ashok & Ashok, 2014). The lowest levels of the pyramid are limited to community mental health services (IMC, 2013). However, the role of this level has not been further investigated for the IMC report.
Figure 1a. WHO’s service organization pyramid Figure 1b. Status of service organization in South for optimal mix of mental health services Sudan in 2013 (derived from IMC, 2013) (derived from WHO, 2005)
1.4 COMMUNITY PERCEPTIONS ON MENTAL HEALTH
It is important to understand existing community attitudes towards the mentally ill when working on the integration of mental health into primary health care. One study was conducted in several communities in South Sudan (Ayazi et al., 2014). In this study people in rural areas held more negative attitudes (e.g., the belief that mentally ill people are dangerous) and expressed greater social distance (i.e., less willing to engage in a relationship with a person who is mentally ill) than people living in urbanized areas. Furthermore, most people preferred hospital/drug-oriented mental health care over community-oriented mental health services, as they believed that medication is required to control the symptoms of mental illness. However, the authors have suggested that these attitudes might reflect people’s unfamiliarity with ‘mental health’, and thus perceive it as something that should be treated by means of external aid, such as medication or hospitalization (Ayazi et al., 2014). Furthermore, Hugo and colleagues (2003) highlighted in a similar study in South Africa that, when people are unaware of the availability of effective treatment, ignorance and stigma around
11 mental health may prevent them from seeking help. So, even when mental health care is available, there is no guarantee for people’s usage of those services. People might be restricted to access those services due to different factors (explained in the next section).
1.5 RESTRICTING FACTORS FOR MENTAL HEALTH CARE USAGE
Limited accessibility to mental health care could be due to different factors, which include inter alia stigma around mental illness (e.g., Ayazi et al., 2014), unfamiliarity with treatment options, the health facilities’ distance from people’s homes, patients’ lack of financial resources (e.g., Hugo et al., 2003), and unsafe environments (e.g., Moszynski, 2013). These limitations all have an effect on people’s health seeking behaviour.
This has also been highlighted by Ventevogel and colleagues (2013). They investigated what people thought about the syndromes’ aetiology and potential treatment in four locations (i.e., Democratic Republic of the Congo, Burundi, and two communities in South Sudan). In case a syndrome was said to be caused by a natural factor, respondents perceived health facilities as a treatment option. However, for symptoms related to depression, family and community interventions were opted (Ventevogel et al., 2013). For severe mental health cases people reported that they thought neither traditional healers nor health facilities would be effective. In general people did not seek help for mental health problems in formal health facilities. This can be explained by the fact that, by the time the research was conducted (i.e., 2007), none of the health facilities had personnel trained on diagnosis and management of mental illness, and thus in general most people were unaware of the existence of effective (pharmacological) treatments (Ventevogel et al., 2013). These findings are in line with previous research on people’s pathways to care. Gater and colleagues (2005) found that up to 10 percent of the people with mental disorders first consult a religious or traditional healer before accessing formal psychiatric services. Often, in African settings (informal) health care providers such as traditional healers play a more prominent role in people’s health seeking behaviour compared to general practitioners (Sorketti, Zuraid, & Habil, 2013; Uwakwe & Otakpor, 2014). Furthermore, even from the PHC workers’ perspective formal health care for the mentally ill is not always the desired option. In Ethiopia 1 out of 20 PHC workers considered traditional healing as more effective for mental illness than modern medicine (Abera, Tesfaye, Belachew, & Hanlon, 2014). This has not yet been studied for the context of South Sudan specifically.
1.6 POSITIONING THE RESEARCH
This research has been conducted as part of the Dutch Consortium for Rehabilitation (DCR) program. DCR is a collaborative venture of four non-governmental organizations (HealthNet TPO, Save the Children, CARE and ZOA), currently implementing a 5-year program financed by the Dutch Ministry of Foreign Affairs. An overview of the DCR program is enclosed as appendix A.
The research took place under direct supervision of HealthNet TPO, a Dutch aid agency that works on health in areas disrupted by war or disasters. HealthNet TPO works in five counties in South Sudan: Jur River County, Wau County and Wau County (Western Bahr el Ghazal), Aweil North County
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(Northern Bahr el Ghazal), and Bor County (Jonglei State). The programs in Jur River County, Raja Cuonty and Aweil North County are supported by the Health Pooled Fund (HPF), which is a consortium working on the development of South Sudan’s primary health care system. DCR supports (mental) health activities implemented by HealthNet TPO in Jur River County. DCR-supported mental health activities are discussed below. Background information and an overview of HealthNet TPO’s mental health activities in South Sudan are enclosed as appendix B.
Mental health activities as part of the DCR program Over the years 2011-2014 different activities have been done in Jur River County for mental health integration in health facilities. Activities included inter alia: The identification and implementation of various workgroups (e.g., formation of 17 health facility committees between 2011 and 2014, platforms on public and mental health, building civil society organizations). Training for 19 health facility staff members in relevant areas (e.g., on mental health, or on the usage of the Health management Information System (HMIS)/District Health Information Software (DHIS)). Provision of 710 trainings on health issues. Rehabilitation of 17 health facilities and the monitoring of utilisation rates and patients’ satisfaction with the health services. Delivery of awareness raising programmes on health issues in communities since 2013, including topics on mental health and psychosocial education (n = 6566) and psycho-education sessions for the Stepped Family Care Program (n = 1069), as well as the monitoring of specific psychosocial interventions in the communities. Tracking current practices of health facilities through a Routine Health Management Information System (HMIS) Monthly Reporting Form (e.g., number of patients treated for malaria; website MoH, consulted at 23 Dec 2014).
The Mental Health Platform in South Sudan, led by the Director for Mental Health and co-chaired by the Dutch Consortium for Rehabilitation (DCR) until April 2015, and thereafter by Handicap International, is a small, committed group of interested State actors from the Ministry of Health, local agencies and international organisations working or with an interest in the field of mental health. Meetings are held on a monthly basis and are used as a forum for presenting and discussing ongoing activity in the mental health arena, as well as current practices, interesting initiatives and upcoming events. Members of the platform communicate in order to coordinate activities and trainings for example, though remain as independent actors.
1.7 STUDY RATIONALE
South Sudan’s health system is very limited as a result of lack of funds, health personnel, facilities, equipment, supplies and medicines (Roberts et al., 2009), and as a result of military attacks at some of those facilities (e.g., hospitals; Moszynski, 2013). Although the war has left – and is causing – an epidemic of mental illness, the South Sudan health system is equipped with few resources to treat it. Furthermore, few studies on mental health have been undertaken in South Sudan. In relatively
13 recent assessments (IMC, 2013; López & Spears, 2015) it was observed that depression, PTSD, anxiety, and substance abuse seem the major mental health issues affecting the country.
The current study is undertaken to address opportunities and challenges of integrating mental health care at the community level. The aim is to inform the organization and other agencies on how to improve access to mental health care at the community level based on this case study of Jur River County.
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Chapter 2: Conceptual framework
This chapter discusses the mental health treatment gap observed in countries worldwide, and the WHO’s action programme (mhGAP) as an initiative to bridge the treatment gap. This study was conducted against the backdrop of the mhGAP. Therefore, the mhGAP is further explained here as part of the study’s conceptual framework.
KEY POINTS It is estimated that only one third of the people with mental health problems worldwide receive adequate mental health care. This is called the mental health treatment gap. The objective of the Mental Health Gap Action Programme (mhGAP), an initiative of the World Health Organization, is to scale up care for mental, neurological and substance use disorders through simplifying evidence-based treatments. There are several limitations in the adoption of the mhGAP, including its direct appeal to the ability and willingness of primary health care workers, the assumption that people seek health care in formal facilities, and a heavy reliance on pharmacotherapy which may not be feasible in all regions. The mhGAP needs to be contextualized for successful implementation.
2.1 WHO’S DEFINITION OF MENTAL HEALTH
The WHO describes ‘good health’ as “a state of complete physical, social and mental well-being, and not merely the absence of disease or infirmity” (WHO Constitution, 1946). Hence, mental health forms and integral part of the concept health, and is thus not limited to a person’s physical state. It may be positively or negatively affected by different determinants including intrinsic and extrinsic forces. Intrinsic forces include, among other things, a person’s genetics or habits. Extrinsic forces may be related to the health sector (e.g., preventative, curative or promotional aspects) or to elements outside the health sector (e.g., social factors, such as poverty, or environmental factors, such as climate change; www.who.int, consulted on 18 Dec 2014). In the WHO’s definition ‘mental disorders’ are “characterized by some combination of abnormal thoughts, emotions, behaviour and relationships with others” (www.who.int, consulted on 18 Dec 2014). However, the interpretation of abnormal remains unspecified in this conceptualization.
2.2 CROSS-CULTURAL UNDERSTANDING OF MENTAL HEALTH
Cross-cultural psychiatry studies mental illness rather than mental disease, so that the focus is primarily on psychological, behavioural and socio-cultural dimensions which are associated with mental illness, and less on organic aspects of psychological disorders (Helman, 2007). There is an important relation of culture to mental illness. It defines what is ‘normal’ or ‘abnormal’ in a particular society, it differentiates ‘abnormality’ from ‘mental illness’, it influences the clinical presentation of mental illness, and it determines the ways mental illness is detected, diagnosed, explained and
15 treated by members of the community (Helman, 2007). The understanding of local concepts related to mental illness is particularly important in public mental health programming (Ventevogel et al., 2013).
Ventevogel and colleagues (2013) have studied local idioms of mental illness in, among other African settings, Jur River County, South Sudan. This research was done to assist HealthNet TPO’s work on the integration of mental health activities into primary health care services. They asked respondents about the manifestations of problems in thinking, feeling or behaving in their communities. Three local syndromes were identified in Kwajena Payam (Jur River County), namely moul, wehie arenjo/wehie arir, and nger yec (Ventevogel et al., 2013). Moul refers to a syndrome in which people show aggression and bizarre behaviour (i.e., walking around naked), and seems very similar to the psychiatric concept of psychosis. Wehie arenjo (‘destroyed mind’)/wehie arir (‘disturbed mind’) describe people that are suddenly and temporarily very sad, have suicidal thoughts, are easily angered or aggressive, and display strange behaviours (i.e., talking when no one is around). Nger yec (‘cramped stomach’) refers to a syndrome that includes almost all symptoms of the DSM-IV definition of depression (Ventevogel et al., 2013). Although we acknowledge that we should be careful not to become too restrictive using “a rigid set of professional definitions of mental disorder that may have limited validity in different populations” (Ventevogel et al., 2013), for the purpose of this study we will adopt the mhGAP as its conceptual framework.
2.3 MENTAL HEALTH GAP
Thirty percent of the world’s population have some form of mental disorder at some point in their life (Global Mental Health Group, 2007). Of these people only one-third receive adequate treatment. This percentage is even lower for people in low- and middle-income countries (Global Mental Health Group, 2007). Therefore, strategies are needed to bridge the treatment gap. In their call for action the Global Mental Health Group (2007) opted for scaling up services for people who already suffer from mental disorders: “the overall volume of services provided to treat people with mental disorders needs to be substantially increased (…) so that the available care is proportionate to the magnitude of need” (Global Mental Health Group, 2007: 1241). They furthermore suggested focusing on interventions that do not need to be delivered by mental health professionals. This has already been translated by researchers as task-shifting in which interventions are provided by trained non- specialists (e.g., Jordans, Luitel, Tomlinson & Komproe, 2013; Abdulmalik et al., 2013). Furthermore, stepped-care models have been introduced in different countries as to maximize efficiency of the delivery of mental health care (e.g., Honikman et al., 2012; Jordans et al., 2011).
One example of how to integrate mental health care into a PHC setting comes from South Africa (Honikman et al., 2012). A stepped care model for maternal mental health was developed as maternal mental disorders are higher in LMICs, and in addition, maternal suicide is the leading cause of death during the pregnancy (Honikman et al., 2012). The stepped care included a mental health screening by nurses and midwives at women’s first antenatal visit. If women met the criteria for diagnosis they were referred to on-site counselling by a mental health professional. Follow-up was also done through telephone calls, so women did not have to invest time and money on their travel to the clinic (Honikman et al., 2012).
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2.4 MHGAP PROGRAMME
In response to the call for action the WHO developed a mental health Gap Action Program (mhGAP), based on the idea that “[t]here is a widely shared but mistaken idea that improvements in mental health require sophisticated and expensive technologies and highly specialized staff” and that “most of the mental, neurological and substance use conditions that result in high morbidity and mortality can be managed by non-specialist health-care providers” (mhGAP guidelines, 2012: iii). The mhGAP’s objective is to scale up care for mental, neurological and substance use (MNS) disorders through simplifying treatment of mental disorders (WHO, 2008).
A technical tool for the implementation of the mhGAP has been developed to guide the delivery of care in non-specialized health-care settings (mhGAP-IG; WHO 2012). Recently, the mhGAP humanitarian intervention guide (mhGAP-HIG) has been published. This tool is specifically developed to assist non-specialist health care providers in humanitarian emergencies. The mhGAP-IG guides health care providers working in primary health care in what to do with regard to eleven priority conditions, which are selected based on their figures for mortality, morbidity or disability, economic costs and violations of human rights. These include: depression, bipolar disorders, psychosis, epilepsy, developmental/behavioural disorders (children and adolescents), alcohol/drug use disorders, self-harm/suicide and other significant medically unexplained/emotional complaints (mhGAP-IG 2012). It provides non-specialized health care providers with information on the diagnosis for each condition and the common (evidence-based) interventions that can be offered, including the possibility to refer the patient to a higher – more specialized – level. The WHO underlines that the mhGAP should be used as a template and must be adapted according to the local context (e.g., the country). Therefore, it offers a framework of seven action points needed for the integration of mental health into a country’s PHC structure, which includes (WHO, 2008):
1. Political commitment 2. Assessment of needs and resources 3. Development of a policy and legislative infrastructure 4. Delivery of the intervention package 5. Strengthening of human resources 6. Mobilization of financial resources 7. Monitoring and evaluation
In several low- and middle-income countries researchers are working towards the implementation of the mhGAP guidelines (e.g., Siriwardhana et al., 2013; Abdulmalik et al., 2013). One example is a case study in Nigeria for which the mhGAP guide has been adapted and contextualized to the Nigerian health system (Abdulmalik et al., 2013). They observed a gap between PHC workers’ and general practitioners’ knowledge on mental and neurological disorders. Some parts of the guide were not used (e.g., if the condition was not considered an issue in the Nigerian environment) or changed (e.g., rephrasing of text in order to improve PHC worker’s understanding of the concepts). They furthermore found that the guidelines itself needed adaptation with respect to the suggested actions, as task-shifting to lower levels of care was considered beyond the competence of the PHC
17 workers (e.g., instead of treatment of cases of Wernicke encephalopathy on the PHC level referral of the patient to higher levels of care; Abdulmalik et al., 2013).
2.5 LIMITATIONS OF THE MHGAP PROGRAMME
The mhGAP (WHO, 2012) is based on the assumption that people with mental illness attend primary health care services. However, research in low-income countries have shown that most people do not consult formal health care and rather seek help with traditional or alternative health care first (Uwakwe & Otakpor, 2014; Sorketti, Zainal, & Habil, 2014). Thus, a sole focus on the detection of mental illness among PHC workers does not close the gap, as most mentally ill people do not attend those services (Uwakwe & Otakpor, 2014). The mhGAP makes a direct appeal to PHC workers to detect, diagnose and refer or treat people with mental illness. However, it is not guaranteed that PHC workers have the ability to take up this new role, as they are often burdened with tasks related to other health conditions, such as infectious diseases and malnutrition (Abera et al., 2014). Moreover, although most PHC workers support the idea to integrate mental health care into PHC, not all of them express the will to provide it themselves (Abera, Tesfaye, Belachew, & Hanlon, 2014). Another point of concern is articulated by White and Sashidharan (2014) and refers to the mhGAP’s overreliance on psychotropic medication. They argue that the long-term use of anti-psychotic medication may contribute to increased morbidity, such as metabolic disorders, and a risk of premature mortality, such as sudden cardiac death. They furthermore state that, with this overreliance on psychotropic medication, mhGAP becomes a substitute of previous medical pluralism, in which multiple treatment options are available such as alternative forms of care (White & Sashidharan, 2014).
2.6 DEFINING THE HEALTH SYSTEM
In this research proposal for the study in South Sudan the ‘health system’ refers to both formal (teaching, state and county hospitals, PHCCs and PHCUs) and informal (traditional and alternative healing) care. South Sudan’s health system will thus not be approached as a four-tier system (i.e., teaching/state hospitals, county hospitals, PHCCs, PHCUs), but as a health system in which informal healing practices are included.
The WHO resolution on traditional medicine (2000) states that governments should make an effort to recognize and incorporate traditional medicine into the primary health care system (Kasilo et al., 2013). Traditional healing practices are not explicitly mentioned in South Sudan’s health policies (i.e., HSDP, 2012). For most people, especially in the rural areas of LMICs, traditional medicine is the primary health care provider (Eldam, 2003; Helman 2007; Sorketti et al., 2011). Therefore, the position of traditional healing is particularly important to find solutions for bridging the gap in mental health care provision (Sorketti et al., 2011).
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Chapter 3: Study’s focal point: Aims and objectives
The goal of this research is to investigate opportunities and challenges for the integration of mental health care in the current primary health care system. As part of the DCR program, this study aims to inform HealthNet TPO and other organizations and agencies on how to improve access to mental health care at the community level. This chapter gives an outline of the research questions posed.
KEY POINT To research how mental health can be efficiently integrated into primary health care in Jur River County, three aspects in particular are discussed: 1) the availability of mental health care services, 2) people’s access to these services, and 3) communities’ perceptions of the feasibility of mental health care integration into current health services.
The study’s findings and conclusions are based on a case study of Jur River County, Western Bahr el Ghazal, with as main research question: How can we efficiently integrate mental health into primary health care in Jur River County? Three sub research questions guided the study, focusing on mental health care availability, people’s access to mental health services, and to perceptions of (non- )specialized health care providers and policy makers on the feasibility of the integration of mental health care at the community level.
1. What community services for (mental) health care are available?
As described in the introductory chapter, HealthNet TPO supports health care services in Jur River County. The aim of this research question is to map (formal) health care services within the county, specifically for the provision of mental health care. The research question furthermore focuses on availability of mental health care in the region.
2. According to community members, what are the constraints to gain access to health care for mental health problems?
Availability plays a central role in providing mental health care. However, there could be constraints on the part of accessibility of health care services. As described in 2.4, apart from structural barriers, it is yet to be questioned whether people seek for health care for their mental health problems. Health seeking behaviours and access are further investigated in this research question.
3. According to (non-)specialized health care providers and policy makers, how could mental health be integrated into the current health system? What are the opportunities and challenges to integrate mental health into primary health care?
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The mhGAP-IG is a tool developed to facilitate the integration of mental health care into a country’s health system. It is the aim of this research question to investigate how health care providers and policy makers perceive this integration. It furthermore gives insight into the feasibility of the implementation and dissemination of the mhGAP.
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Chapter 4: Methodological framework
This chapter discusses the methodological framework. It includes an overview of the selection of research methods, plan of data analysis, the study’s unit of analysis and research location, limitations, and ethical considerations.
KEY POINTS This report is built on a case study of Jur River County, Western Bahr el Ghazal. Quantitative methods used included surveys for health facilities and pharmacies on the provision of mental health services, and surveys for community members on health seeking behaviors. Qualitative methods used included document analysis, semi-structured interviews, focus group discussions, in-depth interviews, and participant observation.
The applied research methods are based on both qualitative and quantitative methods. Triangulation strengthens the validity of the data through cross-verification (Lacey & Luff, 2001). Qualitative research methods included document analysis, semi-structured interviews, focus group discussions, in-depth interviews and observations. Quantitative research methods included service mapping and a household survey. In this section the different methods are discussed. Table 2 gives an overview of the research tools, the number of subjects interviewed, and the use of each tool for a research question (page 24).
4.1 RESEARCH METHODS
4.1.1 Document analysis Several documents are used to contextualize current policies and practices regarding mental health care services in South Sudan. Documents include reports on service delivery in South Sudan, HealthNet TPO program reports, DCR program reports on service provision and their past and current activities.
4.1.2 Surveys For a cross-sectional measurement a survey is an easy and quick way to retrieve quantifiable information (Bryman, 2008). It was chosen to undertake face-to-face surveys as most of the respondents are illiterate.
4.1.2.1 Health facility survey A health facility survey (appendix C) was conducted among the persons in charge of the selected health facilities. The health facility survey comprised an assessment of mental health care in the PHC facilities, in which information on the health facility staff members, training, mental health services and drugs provision was gathered. In total 8 surveys were conducted.
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Procedure This short survey preceded a semi-structured interview with the person in charge. If the person in charge was not available, the person in charge for that day was invited for a survey.
4.1.2.2 Pharmacy survey A pharmacy survey (appendix D) was conducted in a small selection of pharmacies. Information on the pharmacies, such as the availability of psychotropic medication, was gathered. In total three surveys were conducted.
Procedure First, all pharmacies and drug stores in Wau were listed. Second, they were ordered according to the type of pharmacy (i.e., pharmacy, pharmacy company (whole sale), or drug store). Lastly, one pharmacy of each type was selected for the survey to get an idea of the medication provision in Wau capital.
4.1.2.3 Health seeking behaviour survey A household survey (appendix E) was conducted among community members living in the six payams under the study (i.e., whole of Jur River County). Data was collected on demographics, health seeking behaviours for sick household members, and expenditures on health care in their area (e.g., distance of travelling, payment of medication or consult). In addition, five questions were included for this mental health study specifically, to systematically collect data on community members’ awareness of mental health problems and their (mental) health seeking behaviour.
Sample size calculation In order to calculate the sample size the Kish and Leslie formula (1965) was used. We assumed an alpha error of 0.05, an acceptable error of 5%, a design effect of 1.2 (based on other studies in the region; e.g., Korenromp et al., 2004; Emerson et al., 2008; Williams et al,. 2014) and an expected prevalence of people seeking health care in health care facilities in the past months of 50%. Hence, the minimum sample size of 460 was required.
Data collectors Six university students or graduates from Wau University were trained to conduct the surveys. The training took two days, in which they were taught basic interviewing skills, developed a basic understanding of mental health, and gained experience in the use of the tools.
Participants Households within each boma (of the selected facilities) were selected using the spin-the-pen method (Smith & Morrow, 1996). In total 14 clinics (corresponding to 14 bomas) were visited. We aimed to include 36 households per PHCC and 30 households per PHCU, so that the required sample size was met (i.e., N = 462).
Procedure After spinning the pen, every second household was included. The head of the household, or one of
22 the adults living in the household, was asked to participate in the questionnaire. The spin-the-pen method was chosen because of a lack of geographical and demographic information of the area.
4.1.3 Semi-structured interviews Although semi-structured interviews follow a general script, they are open ended. The respondent has some leeway in replying, in which the interviewer can focus the next question on what the respondent has replied. A topic list ensures that certain topics and questions are covered (Bryman, 2008). Semi-structured interviews were conducted with different target groups for which different topic lists (appendix F) were used. There was a version for (non-)specialized health care providers and one for policy makers. Both types of topic lists were based on items in domain 1 and 2 of the WHO-AIMS, a tool for collecting essential information on mental health systems (WHO, 2009). The topic list for (non-)specialized health care providers and policy makers is based on WHO-AIMS items in domain 1 and 2.
4.1.4 Focus group discussions Focus group discussions (FGDs) are interviews with several participants in which a particular topic is discussed, that can complement other interviews such as surveys and semi-structured interviews. FGDs allow the researcher to understand why people think or feel as they do (Bernard, 2011). In this study FGDs were used to explore people’s attitudes and views towards mental health services in the area. Specific groups of people, such as health facility committees, were identified prior to the research.
4.1.5 In-depth interviews In-depth interviews are either unstructured or semi-structured and can be used to gain information on specific aspects of the respondent’s life (Bryman, 2008). In this study the main aim of the in-depth interviews was to explore health care seeking pathways of families taking care of a mentally ill person.
4.1.6 Participant observation Participant observation entails the researcher’s observations of the way people behave. A research diary with notes about field observations, photographs taken during field trips, and the researcher’s own experience of living in another place, are all part of participant observation (Bernard, 2011). A research diary was kept in order to reflect on possible factors of bias: How do people respond to HealthNet TPO’s work, on the presence of a Dutch female researcher, and on the theme of mental health? What is the position of HealthNet TPO within Jur River County? This research was performed within the context of South Sudan’s enduring instability. Therefore, socio-political changes on a broader scale or local events might change the research dramatically. This method was not applied in order to answer any of the research questions, but was used to position this research within the context of South Sudan.
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Table 2. Overview of Research Tools Tool N Research question Focus group discussions 10 2 + 3 Semi-structured interviews 14 1 + 2 + 3 In-depth interviews 4 2 Health seeking behaviour surveys 475 2 Health facility surveys 8 1 Pharmacy surveys 3 1
4.2 APPLICATION OF RESEARCH METHODS PER RESEARCH QUESTION
4.2.1 Methods applied for research question 1: Availability of mental health services In order to answer the first research question mapping tools (short survey, GPS coordinates) were used. The short survey was undertaken with primary health care providers. With this survey information was gathered on the extent to which the health facilities are providing mental health care (e.g., detecting mental disorders, referral). This research question required quantitative measures, which makes a survey a suitable interview tool. Further elaboration on mental health service delivery was done through semi-structured interviews, to allow the respondent to add topics not primed by the researcher. GPS coordinates were taken and used to draw a map of the area and to indicate the positions of the health facilities. Furthermore, document analysis was used to contextualize current practices against the backdrop of policies, health services implemented by the MoH and services by HealthNet TPO.
4.2.2 Methods applied for research question 2: Access to mental health services In order to answer the second research question a household survey, focus group discussions (FGDs), in-depth interviews and semi-structured interviews were used. The household survey is a large-scale survey on health seeking behaviour among inhabitants of Jur River County. We chose to use a survey because it is a structured data collection method that can be applied on a larger scale. However, surveys do not give information on people’s reasoning. Therefore, we also asked questions about people’s health seeking behaviour during FGDs. In addition, because participants in the FGDs were not necessarily known with mental health problems in their direct social environment, families of people with mental illness (N = 3) were approached for an in-depth interview. The aim of the in- depth interviews was to gain more insight in the ways people accessed health care (e.g., encountered opportunities and challenges), the role of their social environment (e.g., experiences with support or stigma) and to learn more about the treatment they received (e.g., pharmacological therapy, psychosocial therapy, traditional healing). Semi-structured interviews were undertaken to gain more insight into health care providers’ experiences with patients who come to seek for help.
4.2.3 Methods applied for research question 3: Feasibility of the integration of mental health care In order to answer the third research question semi-structured interviews and FGDs were used. Semi-structured interviews form the best option when there are not many possibilities to interview a respondent (Bernard, 2011). In our case, we could visit certain bomas only once, due to their distant locations, while we could visit other (nearby) bomas for different subsequent days. Following a topic list we ensured that certain topics were covered in semi-structured interviews. Semi-
24 structured interviews were held in Juba, Wau capital and Jur River County. Key informants were identified based on their profession and field of expertise (e.g., medical doctors based in hospitals). The snowball technique was used in order to find key informants working in the field of (mental) health.
In total ten FGDs with members of the community, fourteen semi-structured interviews with (non-) specialized health care providers and policy makers, and four in-depth interviews with community members were held (see appendix I for a more detailed overview). Specific groups of people were identified prior to the research. For example, members of health facility committees are volunteers from the community who seem to play an important role in connecting the health facilities to the community, and vice versa. Policy makers include members of the parliament representing Jur River County, directors working at the (State) Ministry of Health, and administrators on the level of the payams and bomas in Jur River County. There were in total 475 respondents for the health seeking behaviour survey.
4.3 METHODS OF DATA ANALYSIS
The qualitative data analysis process comprised the identification of themes and patterns within the raw data using a framework analysis method (Lacey & Luff, 2001). Interviews, including field notes, were transcribed in English. Key themes were a priori identified, including: observed mental illness, availability, access, and feasibility. These key themes were based on the theoretic framework of the research, whereas inductive categorization continued throughout the analysis process. Connections between themes and research goals were identified using ATLAS.ti software.
Quantitative data analysis of the health seeking behaviour survey was done using the SPSS software package. For this mental health study mainly survey data related to demographic information and mental health were analyzed. Separate reports were written on all the findings of the Health Seeking Behaviour survey and the Patient Satisfaction Survey. A short survey for primary health care providers was used to map current mental health practices in Jur River County, as described under 4.2.1.
4.4 UNIT OF ANALYSIS AND SAMPLING
One of the foci of the study is to explore the perceptions of community members and stakeholders on how mental health could be integrated into the health system, and specifically into the primary health care system of Jur River County. Hence, the primary units of analysis are the community members and stakeholders. Community members are people from the community in Jur River County. In this case stakeholders are individuals that are (indirectly) involved in health care, either on the level of policy making or on the level of (in)formal health care service delivery. Stakeholders do not necessarily belong to the communities of Jur River County, as decision making on national and state levels have an effect on health provision on the ground. Therefore, health care providers and authorities/policy makers outside Jur River County, at higher authority levels, were approached as well (i.e., Juba and Wau capital).
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A purposive sampling technique has been used (Bernard, 2011). Health facilities in Jur River County were chosen by use of a maximum variation sampling method. This purposive sampling method ensures that clinics with different characteristics would be represented in the research. First, an overview of all health facilities was made (N = 38; appendix G). Of this list, two non-functional PHCUs (due to a lack of staff or infrastructure were excluded). A third facility was excluded because this concerned a military hospital not supported by DCR. We aimed to include at least one PHCC and one PHCU per payam to ensure an equal representation of both types of facilities.5 All PHCCs were included (n = 7). The remaining unordered list of 27 PHCUs was then subdivided according to mental health training (i.e., trained vs not trained staff),6 distance from Wau (i.e., < 1 hour drive vs > 1 hour drive), and accessibility by road. In each of the resulting 8 groups every first PHCU was included, while safeguarding equal representation of each payam. In order to get equal numbers of facilities, Maranya PHCU was replaced for Mapel PHCC, as these facilities had the same characteristics (the only difference being the type of health facility). Figure 2 presents the tree diagram used for the selection of health facilities, using their list numbers (see appendix G).
Trained Not trained (n = 5) (n = 22) ↙ ↘ ↙ ↘
Far from Wau Not far from Wau Far from Wau Not far from Wau (n = 3) (n = 2) (n = 12) (n = 10) ↙ ↘ ↙ ↘ ↙ ↘ ↙ ↘
Road No road Road No road Road No road Road No road (n = 2) (n = 1) (n = 1) (n = 1) (n = 2) (n = 10) (n = 9) (n = 1) ↓ ↓ ↓ ↓ ↓ ↓ ↓ ↓
Maranya Bararud Gette Mbili Nyinakok Alelthongy Alelchock Wadalel ↓
Mapel PHCC
Figure 2. Tree Diagram Maximum Variation Sampling
5 At the moment of the study authorities in Jur River County were in the process of increasing the number of payams, whereby each payam was divided into two or more payams. For the purpose of this study we chose to base our study site on the old organizational structure; the research took place in a selection of bomas throughout all six (old) payams. 6 This division was based on the participation list from the mental health workshop that was organized by HealthNet TPO in October/November 2014.
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4.5 LIMITATIONS
This study faced several limitations that possibly affected the outcomes. The position of the researcher as an outsider to the communities might have influenced the research outcomes. Being a non-South Sudanese female researcher who does not speak the local languages and is unknown to the environment might have created some respondent bias. Firstly because, especially in the rural areas, a different physical appearance raised community members’ curiosity, who now knew ‘something is going on’, which restricted the privacy of respondents. Secondly, it might have led to suspicion amongst respondents to participate in the study. During interviews a translator mediated the conversation, inherently placing another person between the researcher and the respondent. Translations were made by local HealthNet TPO staff members who were known with the communities. A benefit of this is that people were more likely to trust the translator, who could introduce the researcher. At its disadvantage, it was more difficult for the researcher to position oneself as independent from the organization. For example, sometimes work-related meetings between the HealthNet TPO staff member and the respondent preceded or followed an interview. Lastly, it might have been the case that respondents did not want to share information with known people. Another disadvantage is that translations are difficult in terms of language, as vocabulary might not be concurrent with mental health issues discussed in English. Translators might have added or deviated from what the researcher intended to say, with the risk of putting their own views or suggestions in the conversation.
Another limitation entailed the socio-political situation in South Sudan. Fieldwork was restricted twice due to fighting in the area. Along with security incidents and volatile situations, the fieldwork period of 9 weeks was a relatively short time to gather all data. Due to security reasons daily trips were made from Wau to the field, instead of staying overnight in the research area. People live in scattered places and inhabitants living in places far away could not be reached in this time-frame and with these security restrictions.
In this study concepts such as ‘mental illness’ and ‘mental health’ were studied, which are sensitive concepts that are understood differently across cultures. For practical use, mental health problems were defined as a set of behaviours, emotions and interpersonal relationships that were seen as ‘abnormal’. In addition, minimal reference was made to English terms for DSM diagnoses. Nevertheless, there is still a risk of bias, resulting from a lack of shared conceptualizations. Also, discussing such a sensitive topic sometimes led to reluctance and hesitation to answer questions. As a consequence the full picture concerning mental illness might not always have been captured. For example, as a consequence of this bias it is expected that certain mental illnesses (i.e., internalizing disorders) are underreported.
The sample of informants and respondents is not representative for the total population of Jur River County. Only people living relatively close to the health facilities were approached, as data collectors moved on foot from the health facility to households and had to return within one day. Data gathered in the health seeking behaviour survey are thus not generalizable to people living further away from the health facilities. This might have introduced a bias, as it could be expected that people living far from health facilities will present other health seeking behaviours than people living close to
27 health services (e.g., Hugo et al., 2003). However, the views of the majority of the population of Jur River County were captured, because the proportion of people in remote locations is relatively small.
Third, in line with the second point, due to limited time to conduct the study (9 weeks) the results might not offer a complete representation of the area. For example, informants in all FGDs were predominantly active community members (e.g., committee members, field facilitators), male, and living close to the center of the visited boma. Lastly, this study is limited to health care providers at the primary and secondary level of care in the area under study. There was no specific focus on religious leaders, although some community members mentioned that they play an important role in coping with mental illnesses.
4.6 ETHICAL CONSIDERATIONS
Internal ethical approval was obtained from the DCR KN coordinators. The research plan was also discussed in all payams with the local authorities who gave approval. Given low literacy levels in South Sudan, all informants provided verbal consent. However, in case of a patient/family interview, written informed consent (IC) was given (appendix H). The consent form was translated by the translator and signed by both the informant and the researcher.
4.7 RESEARCH LOCATION
This research was mainly conducted in Jur River County where HealthNet TPO implements (mental) health programs. Jur River County falls, with Wau County and Raja County, within the state borders of Western Bahr el Ghazal (WBeG, see Figure 3). WBeG is located in the north western part of South Sudan and shares international borders with Sudan and the Central African Republic. Neighbouring states are Northern Bahr el Ghazal, Warrap, and Western Equatoria. WBeG comprises 91.076m2 and has an estimated population size of 334,127 with 48.7 percent females and 51.3 percent males (DHIS, 2014). Jur River County has 141,762 inhabitants (IOM, 2013), mainly working in agriculture, fishing, and animal keeping (Johanniter International Assistance, 2014). It is the most eastern county of the state and shares borders with the three neighbouring states and with Wau County (see Figure 3, page 29). Jur River has no official county hospital. Wau is the WBeG state’s capital and is located in Wau County close to the border with Jur River County. The city hosts one of the three teaching hospitals of South Sudan.
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Figure 3. Map of South Sudan (Derived from: http://www.geographicguide.com/africa-maps/south- sudan.htm)
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Chapter 5: Results
Two groups of key informants were approached. Community informants include representatives of the community, such as members of committees, police officers, and chiefs. The second group comprised of key informants that represented the health system, including medical doctors working in hospitals, primary health care providers and traditional healers in Jur River County. An overview of the respondents can be found in appendix I.
The following three sections set out to explore the three research questions of this study. In section 1 an overview of the availability of mental health services is laid out. In section 2 the accessibility of those mental health services will be discussed. In section 3 the feasibility of integrating mental health services will be explored, on the basis of the view of (non-) specialized health care providers and policy makers.
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SECTION 1: AVAILABILITY OF MENTAL HEALTH SERVICES
KEY POINTS A large treatment gap is observed in South Sudan, especially in rural areas such as Jur River County. This is illustrated by a lack of mental health professionals on different levels of care and the absence of a (specialized) mental health clinic or department in the hospital(s). Few NGOs work on MHPSS in South Sudan. At time of research, HealthNet TPO was the only NGO implementing MHPSS programs in Jur River County Health care providers of 13 out of Jur River County’s 38 health facilities were trained on mental health by HealthNet TPO. However, health care providers were not trained on-the-job. Witch doctors, spearmen and traditional healers make up the traditional health system. Officially, there is no established referral system between the formal and informal health care system. In practice, primary health care providers refer their patients to informal health care providers, and vice versa. Especially in case there is no treatment option (locally) available. Due to the absence of treatment options patients merely rely on self-care, i.e., support from family and community members. Chiefs play an important role in the support of families in the community.
The health system of South Sudan is roughly organized around four main pillars. These include the public, the NGO/FBO run, the private and the traditional health systems (MoH RH policy, 2013). This study also set to explore health seeking behaviour of inhabitants of Jur River County across these pillars. However, there was no specific focus on the health care provision by the private health system and no further elaboration on the role of private practitioners is made in this report.
The aim of this research question was to map community mental health care services available for the inhabitants of Jur River County, and more specifically the provision of mental health care in the region. In this section we would like to draw a picture of the availability of mental health care in the region. Before looking at the availability of health services, HealthNet TPO’s position in relation to Jur River County’s health care organization is discussed.
As described in the introductory chapter, HealthNet TPO supports health care services in Jur River County. Support is provided at different levels. HealthNet TPO works closely together with the State Ministry of Health (SMoH), the County Health Department (CHD) and primary health care facilities in Jur River County. For example, at the moment of research HealthNet TPO assisted the SmoH, together with the WHO and IMC, in releasing the EPI campaign for polio. Although the headquarters of the CHD is based in Nyinakok, some offices of the CHD are located within the HealthNet TPO compound in Wau. During the period of this study, several trainings were provided, such as a four- day training for nurses and community health care providers on the treatment of postpartum haemorrhage. Apart from health-specific tasks, HealthNet TPO works on community systems strengthening (CSS). Six community development officers (CDOs) work with the communities of Jur River County to strengthen (existing) community structures, establish committees, and release awareness raising campaigns on (mental) health.
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5.1.1 PILLAR I: PUBLIC HEALTH SYSTEM
First, the public health system will be discussed. An overview of mental health services at the primary health care level within Jur River County and at higher levels of care in Wau and Juba, respectively, will be provided. Secondly, informal healing practices and community responses in Jur River County will be discussed.
5.1.1.1 AVAILABILITY OF MENTAL HEALTH SERVICES IN PRIMARY HEALTH FACILITIES
Out of the 38 health facilities in Jur River County 14 health facilities, representing 14 bomas, were included in the health facility survey (see section 4.1.2.1, page 21). Together with UNMISS a map was created in which the locations of the selected health facilities could be indicated by use of their GPS coordinates (Figure 4).
Training Of the 14 selected health facilities, staff members of 10 facilities had received the mental health training organized by HealthNet TPO in October/November 2014 (see Figure 4; trained staff-bomas with a red mark, non-trained staff-bomas with a blue mark). However, in fact health care providers of 13 out of Jur River County’s 38 health facilities were trained on mental health (34.2%). This number includes only 5 of the 27 PHCUs (13.2%). Due to the sampling strategy, the ratio of trained/non- trained facilities is not representative for all the health facilities in Jur River County. Namely, all seven PHCCs (100%) and seven out of the 27 PHCUs (25.93%) in the county were included. In this sample, staff of all seven PHCCs and four PHCUs were trained (78.6%). Hence, the biased sample with a much higher percentage of health facilities trained on mental health.
Interviews held with primary health care providers who had received the mental health training in November/October 2014 differed from interviews with primary health care providers who had not taken part in the training. For example, they were more likely to talk about different types of mental illnesses or topics covered in the mental health training of HealthNet TPO. None of the mental health care providers were trained on mental health in the last year through another institution or organization. Only certified nurses had received a course on mental health/hygiene as part of their nursing degree.
Box 1. Mental Health Training Organized by HealthNet TPO From 28 October to 1 November 2014 nineteen health care providers from hospitals in Wau city and primary health care facilities in Jur River County received a training on mental health. This training was facilitated by two (mental) health professionals from the Southern Sudan Psychosocial Program (SSPP). The training aimed for a basic understanding of mental health (problems)/common mental disorders, causes, (pharmacological) treatment and psychosocial support, case management and reporting.
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Figure 4. Map Jur River County
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Pharmacological treatment As a current practice, all basic drugs are distributed in Jur River County via two channels: through HealthNet TPO (Health Pooled Fund) and through the CHD (Emergency Medicines Fund7). The drugs are stored in the warehouse in Nyinakok, a boma in Jur River County where the headquarters of the CHD is located.
Health care providers of all facilities mentioned that, at the moment of research, they could not provide (pharmacological) treatment to mentally ill patients. Psychotropic medication has not been delivered since 2011, when for a short period anti-epileptic drugs (i.e. phenobarbital) and diazepam were available at the PHCC level. By 2011 these drugs were delivered by HealthNet TPO under the Basic Services Fund (BSF) program, but the delivery stopped due to different reasons. First, the BSF program was followed up in 2012 by the Health Pooled Fund (HPF) program, whose essential drug list did not include psychotropic drugs. Second, psychotropic drugs are not yet part of South Sudan’s essential drug list. In addition, according to some of the health care providers the South Sudan government had decided that only ‘trained staff’ should be allowed to prescribe psychotropic drugs. Therefore, psychotropic drugs supply stopped altogether. Two out of the 14 clinics reported that in 2014 a small supply of diazepam was delivered, but that these were exclusively used for patients with convulsions. At the moment of study medication for anxiety disorders (with the exception of diazepam), mood disorders, psychotic disorders and Parkinson’s disease were not available at the primary health care level.8
Counselling No (specific) psychosocial counselling is done in the primary health care facilities. Some health care providers said they sometimes mediate in case of marital problems or give advice on nutrition when patients complain of low energy. The staff members trained on mental health by HealthNet TPO reported giving psycho-education to patients with mental health problems. Furthermore, some of the health care providers mentioned they normally try to include people in (social) activities who tend to isolate themselves.
Referral system It was reported that, in case mental health problems were detected, patients are normally referred to hospitals in Wau. This is especially done for epileptic cases. However, some health care providers stopped referring patients to Wau, because they had many experiences with people referred back from the hospital(s) in Wau without being treated. Patients in Alelthongy and Mapel are normally referred to hospitals in Warrap state (e.g., Kuajok or Tonj hospital respectively) due to their geographical locations. Referral within the hospital level (e.g., from Wau Teaching Hospital to Juba Teaching Hospital) normally does not occur:
“Mental health I doubt whether somebody goes to Juba. We don’t advise them because… how can they go? On the lorry? By bus? Or plane? No one will accept the (inaudible section). Yeah… And usually they end up in the prison.” [4]
7 USAID, UK Department for International Development (DFID), Norwegian Ministry of Foreign Affairs (NMFA) 8 Author’s note: a reference to these specific drugs is made as they are listed by the WHO (2007)
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5.1.1.2 MENTAL HEALTH SERVICES IN HIGHER LEVELS OF PUBLIC HEALTH CARE
Mental health services in Wau There are no hospitals in Wau city with a separate psychiatric unit. Medical personnel from St. Daniel Comboni Catholic Hospital and Wau Teaching Hospital, not specialized in mental health care, reported that they rarely see patients for mental health problems. Psychosocial interventions were not available in any of the hospitals. However, counselling was offered for some cases (e.g., HIV-clinic Wau Teaching Hospital, Daniel Comboni Hospital).
At the moment of this study, Wau Teaching Hospital did not provide any psychotropic drugs. So, if prescribed, patients have to buy them in the local pharmacies (see Box 2). St. Daniel Comboni Catholic Hospital had some psychotropic drugs in stock, but faced some problems with drug provision. Firstly, the continuation of the drugs supply, as they were sometimes out of stock for months. Secondly, the hospital does not charge for consultation or drugs, but requests a single registration fee of 10 SSP. In case long-term psychotropic drugs are prescribed, this becomes very costly for the hospital. Thirdly, medication such as fluoxetine (an antidepressant) was not very well known by the health care providers, therefore this type of medication was very rarely prescribed and subsequently expired.
Although it was not confirmed by the prison personnel, community members said that violent mentally ill people are normally sent to prison. Wau prison had some anti-depressant medication available, as depression was the most observed illness among long-term prisoners.
Box 2. Pharmacies in Wau There are about 25 local pharmacies in Wau: drug stores, run by community health care providers or certified nurses, offering over-the-counter basic drugs, and pharmacies, run by pharmacists, MDs, or registered nurses, offering various types of drugs. In addition, there are pharmaceuticals companies and wholesalers that sell different types of drugs and equipment in large quantities to pharmacies and drug stores. It was not clear whether patients could buy from wholesale companies too. A visit was made to one pharmacy of each type to ask what kind of psychotropic drugs were available. Both pharmacies and the wholesale company were selling diazepam (either as tablets or injections). Diazepam costs 3 South Sudanese Pounds (SSP)9 per package of ten tablets. The pharmaceutical company sold diazepam injections for 2 SSP per ampule. Anti-epileptic drugs (i.e. carbamazepine) were available in the pharmacy for 21 SSP per package of 30 tablets and in the pharmaceutical company for 15 SSP per 100 tablets. The drug store did not sell any anti-epileptic drugs. Anti-psychotics were not available in any of the pharmacies. However, in the pharmacy it was reported that haloperidol could be ordered on request. Other psychotropic drugs of the WHO essential medicine list (2007) were not available, such as anti-depressant medication, anti-psychotic medication, or anti-parkinsonian medication.
Mental health services in Juba Although this research mainly focuses on Jur River County and WbeG’s capital Wau, interviews were also held at the most specialized level of mental health care provided by the Ministry of Health. Therefore, current practices in Juba are shortly discussed here.
9 1 SSP ≈ €0,30 or $0,34 at time of research (http://ec.europa.eu/budget/contracts_grants/info_contracts/inforeuro/inforeuro_en.cfm)
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There are two psychiatrists who are both working in Juba Teaching Hospital and Juba prison. One of them also works in the military hospital of Juba and runs a private clinic. The other psychiatrist teaches at Juba University. Juba Teaching Hospital (JTH) has a separate psychiatry department hosting both in- and outpatients. At the day of visit there were seven inpatients, but it was unclear what the number of outpatients was.10 That day a mental health campaign, led by one of the psychiatrists, took place. Potentially mentally ill people were taken from the street, washed, given new clothes, provided with food and received some medication. Apart from the campaign, there was at least one outpatient who came with her family for consultation with the psychiatrist and the psychologist on duty.
The team working in the psychiatry department (both outpatient and inpatient clinic) consists of three psychologists, two clinical officers and ten nurses. The psychiatrists take turns in doing their rounds in the prison or the teaching hospital. Accompanied by two psychologists or clinical officers they visit the prison three to four times a week. The ward inside the prison is meant for patients with violent or unpredictable behaviour. In the prison patients primarily receive pharmaceutical treatment. Once they are stabilized with medication they normally get referred to the outpatient clinic of JTH for psychotherapy.11
5.1.2 PILLAR II: NGO/FBO HEALTH SYSTEM
There are a few organizations with (planned) MHPSS activities. A psychosocial support (PSS) task force has been established by UNICEF, which coordinates and maps PSS services with a key focus on the conflict affected areas. Also Mental Health Platform was established and chaired by HealthNet TPO to support the development of the broader mental health sector, including policy, advocacy and improved access to integrated mental health services (see section 1.6, page 12). The platform has a strong focus on advocacy for the recognition of mental health (care) by the government and stakeholders. Members of the platform share their (planned) activities and recent developments are discussed (e.g., policy development, proposal for psychotropic drugs on the national essential drug list). At time of study, the International Medical Corps (IMC) and Organismo di Volontariato per la Cooperazione Internazionale (OVCI) have a strong focus on the provision of mental health services. Furthermore, Handicap International (HI) supported mental health care in Juba prison (Box 3, page 37).12
Apart from these examples, there are more INGOs that are working on setting up mental health care as part of current work. For example, at the time of the research the International Organization for Migration (IOM) was in the process of setting up MHPSS activities in the Bor IDP camp. However, in Jur River County HealthNet TPO was the only (I)NGO implementing mental health programs, such as awareness raising campaigns, establishment of health facility committees, the stepped family care program and organizing (mental health) trainings (see section 1.6, page 12).
10 According to the psychiatrist there were no monthly track records of the number of patients. 11 This study was limited to mental health care in Juba provided by psychiatrists and no further research was done to the mental health care of PHCCs/PHCUs in or around Juba. 12 Author’s note: These are descriptions of the mental health programs of these organizations at time of study. These do not represent the organizations’ work at present.
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Box 3. Examples Pillar II Mental Health Services IMC: After an assessment of mental health in different parts of South Sudan (i.e., IMC, 2013) IMC has implemented mental health activities in different parts of the country. Currently a consultant psychiatrist from Ethiopia and a clinical psychologist from the USA have been assigned to organize mental health services in protection of civilians (PoC) and refugee camps in Juba, Akobo, Malakal, Awerial and Maban. Primary health care providers are trained following the mhGAP and national guidelines and receive on-the-job training. Apart from training, the consultant psychiatrist is on call in case of severe mental cases. This specific program has started in August 2014. IMC furthermore provides essential psychotropic drugs in specific health facilities in Juba, Akobo, Malakal, Awerial and Maban, where nurses, clinical officers and medical doctors have been trained on mental health.
OVCI: OVCI delivers health and education services to children with a physical disability In Juba. They furthermore run a PHCC with services for children with a physical disability and other patients. Since Fall 2014 a MHPSS coordinator has been assigned to organize services for mental cases. At the moment OVCI has an EEG scanner for the detection of epileptic disorders and also provides psychotropic drugs. Furthermore, several mental health trainings have been organized (in cooperation with national and international psychiatrists or psychologists) for interested parties. However, OVCI has no human capacity to deliver pharmacological and psychological treatment to mentally ill patients. In case of severe mental illnesses, patients are referred to Juba Teaching Hospital.
Handicap International (HI): HI works on strengthening the organizational capacity of MHPSS in de public health sector, specifically on mental health services provided in the Juba Teaching Hospital and the Juba prison. The organization itself is not delivering mental health care to patients. The mental health project has started in the Fall of 2014.
5.1.3 PILLAR IV: INFORMAL TREATMENT OPTIONS
People reported to make use of informal treatment options for different reasons: It may be the preferred treatment option for the disease the patient has, it may be chosen as a type of treatment that runs parallel to other types of treatment, or it may be an alternative for formal health care when formal health care services are unable to help the patient or are simply not available. In Jur River County there are three informal health care providers: witch doctors, spearmen and traditional healers. Although they have different roles and different treatment methods, there seems to be no clear-cut difference between them. During FGDs community members often argued about their specific roles and tasks. In addition, a person who initially introduced himself as a traditional healer seemed to be both a traditional healer and a spearman, indicating that two roles can also be fulfilled by one person. In addition to this, some people said that a “spearman is traditional witchcraft” [20], and that ‘spearman’ is just another name for a witch doctor. Community members reported to consult these informal health care providers alternately: when one doctor failed to cure the illness, people would consult another (type of) doctor. The decision to consult any of the three depends mostly on what people believed to be the cause of the illness.13
Witch doctor A witch doctor is consulted when a disease is believed to be caused by a curse or by a traditional healer. Witch doctors treat diseases that are related to hatred or bad spirits. Their healing power is something learned from others, so a person is not born as a witch doctor. A witch doctor will refer the person to a traditional healer if the disease is caused by another person. The relation between
13 This section on informal health care is not a complete overview of informal healing practices. The main aim of this section is to provide some insight into alternative health care options.
37 witch doctors and traditional healers could be described as a ‘business’ relation, as they often refer patients to one another.
According to community members witch doctors treat their clients by use of the power of devils. A family member of a child with epilepsy explained that there was a ritual in which the child was taken to the bush. As part of the ritual, the child was bound to a tree, where the chicken was slaughtered and a sum of money was left under the tree. After the chicken was killed, the child’s head was covered with the bed sheet like a headscarf. Hereafter, the father and the child had to leave the bush without looking back, leaving the dead chicken, the money and the witch doctor behind. Another community member explained his wife was supposed to be treated by a witch doctor through a washing ritual. However, the husband could not afford the price of the treatment (500 SSP).
Ways of payment were either through direct money (the lowest amount mentioned was 60 SSP) or by giving an animal such as a chicken, goat or cow. Depending on the size and colour, a chicken costs around 20-35 SSP, a goat around 200 SSP, and a cow can be between 1000 and 2000 SSP. Sometimes the animal was used to pay the witch doctor and sometimes it was part of the slaughter ritual in the treatment.
Spearman It seems that spearmen are specific for the rural areas of Western Bahr el Ghazal and are less known in other parts of South Sudan. A spearman’s powers are believed to come from the gods. According to community members you cannot learn to become a spearman, but you have to be born with these powers. Apart from treating patients, spearmen can also ask the gods for rain. A spearman is mostly consulted when women are unable to get pregnant. Here again, it seems that aetiology plays an important role in the choice for a specific healer: when a certain illness is believed to run within a family (“When it already happened to the grandparents” [18]) people mostly decide to consult a spearman.
“[A] witch doctor can send you to a spearman when related to family. (…) A witch doctor can see whether it’s related to your family. Then you have to go to sit with your family and the spearman can intervene.” [23]
A spearman offers spiritual support; he talks and gives advice, mostly through “call[ing] gods” [23]. Other mentioned rituals in treatments are sacrificing animals and preparing a mixture of herbs (e.g., in case of epilepsy) or alcohol (e.g., in case of alcohol abuse) that the patient has to drink. Community members found the practices of spearmen quite costly. You can pay either through direct money or animals, such as a chicken, goat or cow. It was mentioned by different community members that the spearman asks for a small amount before the treatment, and will claim the rest after treatment success.
“We already had to pay 200 SSP for the introduction. If Mary would recover I would have to pay him 1000 SSP. I wanted it because I love my wife. But my wife did not recover so I also did not pay the spearman and also the spearman is remaining silent and not asking for the money, as he heard in the market that Mary is still sick.” [26]
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Every clan has a spearman and every now and then spearmen of different clans meet. A spearman mentioned it is common practice to refer your patient to a spearman of another village.14 For example, one spearman will detect the problem and then the other will treat it.
Traditional healer In terms of aetiology of the illness a traditional healer is normally consulted when the illness is believed to be caused by another (alive or dead) person. Other reasons mentioned were trust, the absence of formal health care or when formal health care failed to help a patient and people had nothing else to rely on. Traditional healers often treat patients by use of traditional medicine (i.e. herbs). The administration of herbs is often preceded by, or part of, a ritual. Community members with experience of consulting a traditional healer said the ritual often takes place in the forest. Animals can be slaughtered or the patient and the traditional healer will collect the necessary herbs as part of treatment. These herbs are often used as a drug to be rubbed on the skin or to cook soup from. Payment is either through direct money transfer or payment of an animal such as a chicken or goat.
Link formal and informal health care As stated before, people make use of both informal and formal practices. Although community members reported an increase in the use of formal health care, it does not necessarily lead to the non-use of informal healing practices. People had mixed ideas about collaboration between informal and formal health care providers. The majority of the formal health care providers, including the psychiatrists, had a positive attitude towards collaboration with informal health care providers.
“Normally we encourage them to collaborate. Because they can help the patients for many months. When the patient is wasting… because we know very well traditional healers can treat diseases like convulsion disorder, like depression, mild depression, they can treat as a result of (…) mental disharmony.” [2]
Although not officially formalized, in practice this link has already been established, as some primary health care providers and informal healers refer their patients to one another. According to one health care provider, in the past witch doctors came to visit Mapel PHCC to offer (additional) treatment. A traditional healer/spearman explained that he could see whether the illness was something he could treat (called “microscope test” [28], in which the healer can look inside the body with his/her own eyes only) or whether the patient should visit the hospital. In one case he treated a person for ‘madness’, after which the patient’s body had become weak. For this reason the traditional healer/spearman sent him to the hospital for blood transfusions. Illustrative for the link between formal and informal health care providers is the fact that the researcher got in touch with the traditional healer/spearman through a primary health care provider, who called him his friend.
5.1.4 COMMUNITY RESPONSE: SELF-CARE AND THE TRADITIONAL COURT
Severe mentally ill people who are no longer capable to take care of themselves were kept at home. Initially, families take care of them: they provide them with food, look after their sanitary needs, and talk to them. In certain situations they also control the behaviour of the person by locking him or her inside the house or under a tree. “Locking” the person (e.g., a padlock on the legs or locking inside
14 A spearman reported that there are cases in which spearmen cannot diagnose and treat the same patient.
39 the house) is only done in case a person is aggressive or harmful to others or oneself. In rare cases the person is taken to the police, after which the person is either kept at the local prison (i.e., under the traditional court’s administration), or sent to Wau prison, which requires transport money from the family. Personnel of Wau prison and one of Wau’s police stations, where people can be put in custody, said that mentally ill people were rarely referred to them (for mental illness specifically). In case of epilepsy it depends on the frequency and severity of seizures whether families keep the person at home. If the seizures are very often, families prefer to keep the person at home and to restrict their movement close to the river or fire. I often heard that, because of this, children with epilepsy did not attend school, because parents were afraid that a seizure could be fatal. However, epilepsy patients are generally not locked inside the house and can move around freely.
The chief is the local authority of a village, boma or payam, and for this reason also the head of the traditional court (i.e., customary law). The verdict of a chief is legitimate so that he can send a person to Wau prison without interference from another formal hearing. The chief and community elders are seen as confidants. The chief gives advice to families and patients and can act on behalf of the traditional court. For example, a village chief ordered a husband not to have any more children, because of the severe mental state of his wife. Furthermore, the majority of chiefs reported that they were providing some form of counselling to community members in need. The most frequently mentioned situations were marriage problems and alcohol abuse. If the family does not have the financial means to get transport to Wau or to pay for treatment, a chief can help by giving the person some money. Lastly, some chiefs reported they had several experiences in preventing suicide attempts.
When people visit the hospital for mental health problems they are often accompanied by a family member. The hospitals depend on family members as ‘co-patients’ (helpers of patients), since hospitals are often understaffed, and food and medication are not provided.
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SECTION 2: ACCESS TO MENTAL HEALTH CARE
KEY POINTS Access to mental health care services is challenged in different aspects. This section seeks to explore demand for (mental) health care, health seeking behaviors and constraints to access mental health services. There seems to be a low conscious demand for mental health care. Communities reported to observe problems related to syndromes called ‘jue’/’nok’ (epilepsy), ‘moul’/’amuol’ (“madness”), and furthermore, alcohol use, affected mood and suicidal behaviors. Communities most often reported difficulties faced with epilepsy. Community members reported that most people seek help with informal healers, such as traditional healers. If asked about the most preferred place for mental illnesses, most people reported hospital-care. Informal and formal health services are both consulted (at the same time or interchangeably). Constraints to access mental health services include: a lack of transportation, financial resources, or appropriate infrastructure (especially during rainy season), and furthermore, insecurity due to (local) political instability, stigma, negative previous experiences with health care, and language barriers.
This section seeks to explore constraints to gain access to health care for mental health problems according to community members. First, the demand for mental health care is discussed, providing an overview of observed mental health problems as discussed by community members during interviews. The next part describes health seeking behaviours with regard to mental health problems. Finally, barriers to access mental health care services are discussed.
The main aim of the mhGAP tool is to scale-up mental health services in order to bridge the gap between mental health needs and mental health care (WHO, 2008). In the previous section the availability of mental health services in Jur River County has been explored. In this research question the accessibility of mental health services in the area will be explored, including local health seeking behaviour and limitations to access health care services for members of the communities. We made use of the health seeking behaviour survey, interviews, and our own observations during field visits.
5.2.1 DEMAND
In the focus group discussions participants were asked to identify and list mental health problems. Informants were first asked whether they observed any people with a mental illness in the community, and if so, how these illnesses are normally portrayed. In this section patterns of mental illness, as described by the informants, are shortly discussed.
Depression, anxiety, psychotic disorders (e.g., schizophrenia), suicide, posttraumatic stress disorder (PTSD), substance abuse, and medically unexplained were mentioned as most frequently observed mental health problems by health professionals working in secondary or tertiary health care.
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Dementia and sexual dysfunction were observed by one of the psychiatrists, while a nurse mentioned epilepsy as the main observed mental health problem in the hospital she was working. In contrast, epilepsy (‘jue’ or ‘nok’) and madness (‘moul’ or ‘amuol’) were most often described during FGDs with community members and interviews with primary health care providers. ‘Raan jok’ or ‘jok’ are names for people who are possessed by demons, but has only been mentioned by two people during the health seeking behaviour survey. The different terms used to describe mental illness will be further explained in the next paragraphs. According to community members and health care providers, the main factors contributing to mental illness in general were (traumatic) experiences of war and current socio-political tensions, daily stressors associated with poverty (e.g., unemployment, lack of food, loss of property), high disease and mortality burdens in families and curses caused by witch doctors or dead people.
‘Jue’ or ‘nok’ Respondents often described the visual symptoms of ‘jue’ or ‘nok’, the Luo and Dinka names for epilepsy: seizures, losing consciousness, saliva running from the mouth and biting the own tongue. Community members observed it both among children and among adults who did not have it during childhood. Epilepsy comes and goes with the position of the moon:
“Epilepsy comes periodically when the moon is here [points towards the road side] or here [points towards the bush, away from the road side].” [16].
“[It comes] at the end or beginning of the month, when the moon appears, they fall sick. It is jue. (…) At the end of the month when the moon appears, a person falls down and does not move for a couple of minutes.” [9].
A seizure can be caused by seeing your own reflection in the water, as illustrated by one of the nurses: “The brain is not functioning, so when they see their own reflection it looks terrible or scary.” [9]. Observed factors leading to epilepsy are head injuries from motorbike accidents, incidents during the war, or a complicated delivery. Some respondents said the disease episode started with another illness, such as malaria or typhoid, and then later developed into epilepsy. A preceding, but not necessarily present, stage of ‘jue’ was called ‘weth’. This illness was described as something that starts as severe fever, but then becomes worse in older age. One respondent explained how ‘weth’ could be caused by different reasons in babies. The first is called ‘weth abuor’ (i.e., high temperature, fainting, vomiting), and is due to catching a cold as a baby or when the mother steps onto a monkey’s foot trail while being pregnant. A second group of symptoms is called ‘bungur’ (i.e., stomach pains, diarrhoea, high temperature), and occurs when green leaves are wiped onto the baby’s face. Lastly, some children get ‘mangeng’ (i.e., high temperature, paralysis) at the time the child is developing teeth.
‘Moul’ or ‘amuol’ ‘Moul’, translated from Dinka as ‘madness’, seems a very broad illness category, characterized by aggressive behaviour, walking around naked, talking to oneself, destroying things and wandering around. Most often these people are seen as very dangerous, because they can be very aggressive towards other people. There was a wide range of symptoms and abnormal behaviours described under this term. One community member said there was a difference between ‘mental retardation’ (“abel” [22]) and ‘madness’, as mentally disabled people, in contrast to ‘mad’ people “can stay
42 peacefully… they don’t hurt people, they need help of others” [22]. In none of the other interviews mental disability was mentioned. According to community members, risk factors for ‘moul’ were the loss of a loved one, thinking for a long time (e.g., about traumatic experiences), overuse of drugs or alcohol, and (severe cases of) epilepsy.
“Thinking for a long time can cause madness. You need to get motivation. (…) If nothing good happens it can develop. You don’t get them in one week. For example soldiers who fought for a long time. When he thinks about the fighting he develops illness.” [17].
Affected mood and suicidal behaviours Prolonged sadness was only mentioned in four interviews, two with community members and two with health care providers. These respondents had participated in a mental health awareness campaign or the mental health training organized by HealthNet TPO. One of the health care providers called it ‘anok’, and described it as “someone who is different and does not like to cooperate.” [14]. In four FGDs community members described this condition as a person who is “sad throughout” and who “does not want to speak” [20]. Furthermore, such persons were characterized as having the tendency to isolate themselves, being easily agitated, inactive, sleeping a lot and who do not laugh, all this for a prolonged period of time. These symptoms seem to relate to the DSM-IV description of depression However, a depressed mood was almost never observed as a mental health problem. Some people talked about people having a fluctuating mood, which was called “taktak” by one of the respondents [HSB]. In five other FGDs community members were asked about internalizing symptoms, like they were described by community members during other FGDs. In some FGDs informants said they did not know anyone with these symptoms. In one FGD community members acknowledged the symptoms, but said they would not see that as a mental illness:
“Sad naturally is not a disease… it is how the person is born, it is not a disease.” [21].
Suicidal behaviours were mentioned in some of the interviews. Some hospital staff had received patients who tried to commit suicide through drinking a poisonous dye. In the communities there were cases in which people tried to burn themselves inside their tukul (i.e., house of bricks and grass). Risk factors most often mentioned for both depressive symptoms and suicide were family issues, such as marital problems. Substance abuse and poverty were also given as reasons for internalizing symptoms. Poverty was often mentioned in concordance with a lack of food and high rates of sickness in the family, and these two problems were also put forward as risk factors for depressive symptoms. Furthermore, the loss of a loved one and the loss of property were observed as risk factors. Another form of loss was defined as the ‘failure of change’ or the ‘failure of expectations’, as illustrated by one of the community members: “Once we had the war and peace came up; many were expecting we would become rich people. (…) But it became the opposite.” [18].
Substance abuse
Not in all communities substance use was observed to be a problem (i.e., substance abuse), however, almost all communities reported high rates of substance use (e.g., alcohol, marihuana, opium). Alcohol and marihuana were most often mentioned as drugs being used. One health care provider
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Table 3. Overview of Demographics Payam Kangi Kuajiena Marial Bai Rocrocdong Wau Bai Udici Respondents N (%) 72 (15.2) 104 (21.9) 69 (14.5) 66 (13.9) 65 (13.7) 99 (20.8) Gender n (%) Male 28 (38.9) 26 (25.0) 17 (24.6) 19 (28.8) 16 (24.6) 44 (44.4) Female 44 (61.1) 77 (74.0) 52 (75.4) 47 (71.2) 48 (73.8) 54 (54.4) Missing 0 (0.0) 1 (1.0) 0 (0.0) 0 (0.0) 1 (1.5) 1 (1.0) Age M (SD) 33.9 (11.08) 32.8 (10.56) 35.9 (11.93) 35.12 (10.70) 35.69 (10.94) 38.4 (11.88) Min 18 18 18 18 18 18 Max 67 76 69 63 64 70 No. of people in household n (%) 6.4 (2.58) 6.8 (2.66) 6.4 (2.58) 7.6 (3.35) 7.3 (3.40) 6.9 (2.43) Min 2 3 1 2 1 2 Max 13 18 14 15 18 16 Residence status n (%) Resident 72 (100.0) 102 (98.1) 39 (56.5) 64 (97.0) 61 (93.8) 94 (94.9) Returnee 0 (0.0) 0 (0.0) 27 (39.1) 1 (1.5) 0 (0.0) 0 (0.0) IDP 0 (0.0) 0 (0.0) 2 (2.9) 0 (0.0) 0 (0.0) 0 (0.0) Other 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0) 4 (6.2) 0 (0.0) Missing 0 (0.0) 2 (1.9) 1 (1.4) 1 (1.5) 0 (0.0) 5 (5.1) Source of income n (%) Farming 46 (68.1) 54 (51.9) 44 (63.8) 29 (43.9) 36 (55.4) 70 (70.7) Business 7 (9.7) 9 (8.7) 10 (14.5) 19 (28.8) 13 (20.0) 8 (8.1) Casual labour 2 (2.8) 1 (1.0) 3 (4.3) 1 (1.5) 1 (1.5) 1 (1.0) Civil service 12 (16.7) 36 (34.6) 9 (13.0) 14 (21.2) 13 (20.0) 19 (19.2) Other 1 (1.4) 4 (3.8) 3 (4.3) 3 (4.5) 2 (3.1) 1 (1.0) Missing 1 (1.4) 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0) Member of community group n (%) 39 (52.0) 22 (20.8) 8 (11.4) 15 (23.4) 14 (20.9) 27 (27.3) Vulnerability in family n (%) 21 (28.4) 25 (23.6) 15 (19.4) 12 (18.2) 13 (19.4) 22 (22.2)
said that some people took some tablets which made them “very happy and active” [13], but he did not know what it was. Furthermore, in Wau city solvent abuse among street children was often observed. However, solvent abuse was never seen in Jur River County, nor was it mentioned by people in Jur River County.
According to some of the community members, alcohol or drug use could result into ‘madness’, indicating that it was a problematic behaviour in their communities. Others said it was not a problem, as people were still able to work, or even better at work after using alcohol. An important reason to drink alcohol is to reduce the feeling of an empty stomach. Drug use is a way to relax from stress or to withdraw from reality. In one boma people told that alcohol use is a tradition at funerals; visitors may bring alcohol for the bereaved to forget about the situation.
5.2.2 PERCEPTIONS ON MENTAL HEALTH SEEKING BEHAVIOUR
In total 475 households within Jur River County were interviewed. Table 3 (page 44) presents an overview of the respondents. A more detailed overview of the respondents is attached as appendix J.
Almost half of the respondents said they did know a person in their community with mental health problems (n = 218, 45.9%). We asked these respondents to describe the illness of those people (frequencies of this subgroup are depicted in Table 4). In total, 117 respondents reported “jue” or “nock”, the Luo and Dinka terms translated into English as epilepsy (24.6%). “Muol” or “amuol”, the Luo and Dinka terms translated into English as madness, were the second most often reported illnesses by respondents (n = 82, 17.3%). Five respondents described symptoms related to an affected mood and two respondents mentioned spirit possession (.4% and 1.1%, resp.). There were some other illnesses described, but the descriptions were too limited to cluster them (n = 33, 6.9%).
Table 4. Overview of Reported Mental Health Problems in the Communities Frequency Mental illness n % Jue/nock 117 24.6 Muol/amuol 82 17.3 Spirit possession 2 .4 Mood-related symptoms 5 1.1 Other 33 6.9
These figures present mental illnesses, as observed by community people, and (as some diseases may remain relatively unnoticed), they cannot give a full picture of the (estimated) prevalence of mental diseases in Jur River County. Research shows a life-time prevalence of common mental disorders of 18.1-36.1 percent globally (Kessler et al., 2009). This percentage is likely higher in (post) conflict areas for priority disorders such as depression, psychosis and anxiety disorders (De Jong, Komproe & Van Ommeren, 2003). Applying previous global research on mental illnesses and specifically in (post) conflict areas to the context of South Sudan, it seems that local people do not consider or recognize certain behavioural and mood problems as mental illnesses.
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Scaling up mental health services in order to meet the needs of people, for instance through task- shifting, requires a deeper understanding of people’s demand for health care. Health seeking behaviour for mental health problems is one of the main premises of the mhGAP framework. However, the assumption that people will seek (formal) mental health care is yet to be questioned. Therefore, this part of the study will focus on people’s perceptions related to health seeking behaviour for mental health problems. The analysis was done on the 258 respondents who answered positively on any of the questions related to being acquainted with mental illness in their community (items 4.1-4.3, appendix E). Four respondents had missing data, so these responses are not depicted in Table 5.
Respondents were asked where they think people with mental health problems seek help. Hospital- care was most often answered (n = 165, 34.1%), followed by traditional healing (n = 137, 28.3%). However, when dividing the response options in formal health care (i.e., PHCC/PHCU, private clinics, hospital) and informal health care (i.e., traditional healers, witch doctors, religious leaders), formal and informal health services were almost equally often reported (formal n = 163, 46.7%, informal n = 186, 53.3%; not in table). None of the respondents reported private clinics (see Table 5).
Table 5. Mental Health Seeking Behaviour Where do people go for What is the best place for mental health care? mental health care? n (%) n (%) PHCC/PHCU 8 (1.7) 2 (.8) Private clinic 0 (.0) 0 (.0) Hospital 165 (34.1) 185 (71.7) Traditional healer 137 (28.3) 19 (7.4) Witch doctor 99 (20.5) 6 (2.3) Religious leader 42 (8.7) 10 (3.9) Other 4 (.8) 2 (.8) Don’t know 29 (6.0) 30 (11.6) Total 484 (100.0)a 258 (100.0)b a This total refers to the total frequency of responses as opposed to the total number of respondents who answered positively on any of the three mental health stem questions (N = 258). A total of 237 respondents answered this particular question, and because it has multiple response options, 237 respondents could give 482 responses in total. b Four cases had missing data on this question, accounting for 1.6 percent.
Furthermore, people were asked about their opinion what, according to them, would be the best place for the treatment of mental illness. The majority of people said this would be the hospital (n = 185, 71.7%) versus 35 respondents who referred to informal health care (i.e., traditional healers, witch doctors, and religious leaders; 13.6%). There seems to be a discrepancy between reported actual and ideal health seeking behaviour. Namely, only few people report informal health care services as preferred treatment option, while, according to the survey reports, many people normally consult these doctors.
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Table 6. Relation Reported Mental Health Problems and Perceived Best Mental Health Services Best place for mental health services PHCU/C Hospital Trad. Religious Witch Otherb Don’t Total healer leader doctor know Nock/Jue 0 37 5 3 2 1 7 55 Muol/Amuol 0 24 3 2 1 0 3 33 Other 0 12 0 0 0 0 2 14 Multiplea 0 6 0 0 0 1 3 10 No answer 2 106 11 5 3 0 15 142 Total 2 185 19 10 6 2 30 254c a When more than one observed mental illness was reported b Refers to the response “anywhere” and “[person] should be left like that” respectively c Missing values for four respondents were excluded.
Table 6 shows the frequency of observed mental illness by community members (first column) and the reported ideal treatment option for mental illness (first row). There was no relation between these response patterns (i.e., columns and rows; X2 (1, N = 254) = 23.602, p = .485). Noteworthy, almost none of the respondents (n = 2, .8%) found a PHCC/PHCU the best place for mental health care.
Pathways of health seeking behaviour People normally try out many informal treatment options. There are different reasons given for a high use of locally available treatment resources. First, especially in the rural areas, where there is no public health facility with staff being trained on mental health treatment, people often first seek help with members of their own community. This can be the chief, asking for advice, but also informal health care providers such as witch doctors, spearmen or traditional healers. Second, people have more trust in alternative forms of health care. It is mostly through word-of-mouth that people know about treatment successes of other community members. Especially in rural areas far from the city, information about available treatment options in Wau is very limited, as illustrated by this citation from a family member of a child with epilepsy:
“I thought witchcraft would really help. I do not know whether medical treatment will help. I heard from others who were ill that they were cured by traditional healers.” [25]
Consulting an informal health care provider was often seen as ‘something from the past’ and something associated with traditional belief systems. In several focus group discussions informants explained that for mental health treatment a shift was taking place from traditional healing practices towards hospital-based treatment. However, community attitudes varied and messages about informal health care held some ambivalence. Although many informants thought informal healing practices were ineffective, they did report having consulted informal healers. For example, the father of a child with epilepsy had consulted several informal health care providers and the only option that seemed to decrease the number of convulsions was a treatment provided by a traditional healer. The father himself was a community health worker in one of the PHCUs we visited. Opinions of community members about the effectiveness of informal healing practices varied. Some community members evaluated the treatment negatively (“[They] just consume people’s property.” [20]) while others stressed the importance of these healers in the communities, as illustrated by the following quote of a nurse working in a PHCC:
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“[It is] important to know the cause so you know how to treat. You need to find the witch or relative who caused it. It will not go away, but the convulsion will be less. But with drug treatment they will improve.” [13]
Furthermore, the decision to consult either a formal or an informal health care provider is often based on what is perceived to be the cause of the mental illness. When a person is believed to be cursed, a witch doctor or traditional healer is consulted first.
“Actually they believe that the mental illness is caused by… you know… supernatural things. Yeah… so for them, the supernatural things should be treated by a supernatural doctor.” [3].
Most hospital health staff said their mental health patients often simultaneously consulted traditional healers, but also that they lacked knowledge about those practices. Negative previous experiences (personally or as heard from others) in the hospital or primary health care facilities may also lead to reluctance to visit a formal health care provider for mental health problems. People said having heard that treatment did not help or that patients were sent back because there was no (pharmacological) treatment or specialist. Others had never heard that mental health treatment was available in public health care.
Shame was often reported as a reason not to seek health care. People were ashamed to visit the hospital with a mentally ill family member and preferred to keep the person at home. Families reported to consult formal health care providers when the patient has a medical condition. In addition, somatic expressions of mental illness were often observed by the psychiatrists.
“People do come to the hospital because they have [a] physical illnesses. So this is the cause of their visitation to the hospital. But most probable it is not the cause of their illnesses. Yah... because if you trace them... this person will start behaving [differently] even before this person is having this malaria or typhoid.” [3].
Low awareness also resulted in stigmatizing behaviour in the community. Community members said that in general people are scared of other community members who are seen as ‘mad’ or who show symptoms of epilepsy. It was mentioned that sexual intercourse with a person with epilepsy might infect you as well or that people refused to greet community members with epilepsy. Even siblings of a person with epilepsy or a mental illness faced difficulties, such as finding a partner to marry with. A woman taking care of her grandchildren with epilepsy said that people in the market talk very negative about the children, claiming that they are “already a dead body” and they are “not beneficial anymore” [25].
One of the psychiatrists called Juba prison a ‘dumping place’ for families that did no longer want to take care of their mentally ill family member. At times the prison had difficulties tracing back family members to pick up the patient after being discharged. In Jur River County I heard several reports that families abandoned their mentally sick children and that these children ended up living in the street. According to health care providers many are sent to Wau city where they are likely to get addicted to drugs.
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Difference in health seeking behaviour for internalizing versus externalizing problems
“So you find that very few cases... this one... which is presented with violent behaviour... normally they go to the hospital. But if they’re very quiet... not talking to people... [the family] take[s] care of them.” [2]
Patients and their family members tend not to seek health care for internalizing mental health problems, such as anxiety or depression. A person with a depression is often not viewed as mentally ill, but seen as someone who is stubborn and unwilling to participate, as illustrated by this quote from a nurse working in one of Wau’s hospitals:
“Depression is not understood as.... we understand it as an illness. But if people themselves... maybe is not understanding it as an illness. When they come to us sometimes they come with physical illness that we realize this is a case of depression.” [8]
This was also observed during focus group discussions, in which only a few informants mentioned symptoms of a depressed mood by themselves. It was only after giving examples of symptoms of depression (i.e., using DSM-IV criteria), that some informants recognized this in other community members and saw it as a ‘problem’.
“There are some people here [who are] always sad. Big people who are supposed to marry but they have not married. Their lives are affected. If they don’t marry now their life will be very hard.” [14]
For externalizing problems such as aggression and psychosis patients and their family members consult both formal and informal health care providers. It seems that, whenever the person becomes a burden -not only for the family, but also for other community members the problem is acknowledged and help is sought. This could be with formal or informal health care providers, but also with civil services, such as the police, or elders from the community.
5.2.3 CONSTRAINTS TO ACCESS MENTAL HEALTH CARE
“You know one of the senior officers came to me yesterday, in the clinic... one of the senior officers! Army officers... he came to me and said... ‘Doctor... I have now [understood] why people are becoming mad.’ I said: ‘Why?’ ‘You see I have a child who [has a] very high fever, who is vomiting, and I don’t have money in my pocket. What can I do?’ (...) Somebody who is a senior officer! What do you expect of somebody who is not working or who is getting that little amount? So it’s terrible! So the standard of living is really a problem...” [4]
Although a lack of financial resources was often mentioned as a barrier to access health care, transportation was even seen as a bigger problem. Apart from transportation costs, transportation means, such as a bicycle or getting a lift from a passing car, are often not available, so that people have to travel to the nearest facility on foot. The importance of the transportation issue is illustrated by the following quote from a member of the payam administration in Mbili:15
15 Author’s note: Although DCR refers to Mbili as a boma, Mbili upgraded from boma to payam the week prior to the interview. Here the respondents are called ‘payam administrators’ and not ‘boma administrators’, as this study considered Jur River County’s political structure as known in 2014 and thus refer to Mbili as a boma.
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“First, transport is not there. Second, people don’t have money for transport and treatment.” [17]
Communities live in scattered locations and have to walk a long distance before they reach the nearest PHCC or PHCU. For bomas such as Alelthongy and Mbili, the infrastructure during the rainy season does not allow them to travel by road. This means that for inhabitants of these bomas access to health care in other areas, as well as the medication supply to their own health facilities, are very restricted. In addition, although none of the respondents mentioned insecurity as a restricting factor to health seeking behaviour, during the time of research some health facilities were not reachable because of fighting in the area. Due to a short violence outbreak medication supply by the CHD was cancelled for that week and one nurse tragically was shot dead.
As described in the previous section, people normally rely on informal health care and much less on formal health care services. However, in case of severe mental health problems (range of symptoms clustered as ‘moul’) or epilepsy caretakers seek help in Wau capital, but often return untreated. Such negative previous experiences with higher levels of formal mental health care (e.g., no doctor present, no treatment options for mental illness) also spreads the message that in general there is no treatment option for mental health problems. A family member of a child with epilepsy expressed her wish to consult a medical doctor in the city, but felt restricted as she has no experience going there and does not speak the language used by medical doctors in the city (i.e., English or Arabic). More informants mentioned language as a barrier, of which also medical health professionals who reported feeling restricted doing consultations. Most of the (interviewed) medical health professionals went to Khartoum to study Medicine, where they were educated in Arabic. Unless the medical health professionals are from the region themselves, it will be unlikely for them to speak the many different local languages of Western Bahr el Ghazal.
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SECTION 3: FEASIBILITY OF THE INTEGRATION OF MENTAL HEALTH CARE
KEY POINTS Perceived barriers to integrate mental health services into primary health care include a lack of political commitment, shortage in human capacity and low mental health literacy. Perceived opportunities to integrate mental health services into primary health care include the potential benefits from training and psychotropic drug delivery, the presence of supporting community structures, and (strengthening) the link between formal and informal health systems.
The mhGAP-IG is a tool developed to facilitate the integration of mental health care into a country’s health system. This section sets to explore how health care providers and policy makers perceive the integration of mental health into PHC: According to (non-)specialized health care providers and policy makers, how could mental health be integrated into the current health system? What are the opportunities and challenges to integrate mental health care into primary health care?
It furthermore gives insight into the feasibility of the integration of mental health care in primary health care within the region. First, challenges to the integration of mental health care will be discussed. Second, opportunities for the integration of mental health care are laid out.
5.3.1 PERCEIVED CHALLENGES
Health care providers and policy makers were asked to sketch opportunities and challenges for the integration of mental health care in the current health system. The following list of perceived challenges is derived from conversations with respondents, through FGDs and semi-structured interviews, about mental health care delivery in Jur River County.
5.3.1.1 Lack of political commitment With the absence of a national Mental Health Act, a specific budget for mental health services and clear national Mental Health policies, political commitment on the national level is lacking. Recently, moves are made to establish a Mental Health Directorate in the Ministry of Health, which is led by one of the psychiatrists and falls under the Directorate of Medical Services. The Mental Health Platform is trying to facilitate the process of developing a Mental Health Act, but a politically tense relationship between stakeholders seems partly to hinder further development of mental health services as there is limited cooperation between the psychiatrists involved in national policy drafting and mental health planning.
Furthermore, the absence of clear national Mental Health policies (e.g., Mental Health Act, budget for Mental Health interventions) restricts NGOs in carrying out mental health services, such as the prescription of psychotropic medication at lower levels of care. The fact that NGOs implement mental health programs in order to build up the national mental health services, while trying to stick to strict national guidelines, does create tension. For example, although some INGOs try to make
51 psychotropic drugs available at primary health care levels (following the mhGAP model), psychotropic drug provision at lower levels of care is not part of health policies (e.g., BPHS, 2011). Eventually this negatively affects the implementation of mental health programs. Furthermore, since there is no clear Mental Health plan on the national level, policy makers on the level of the (Western Bar-El-Ghazal) State feel they have no power to influence current policies. A feeling of ‘ownership’ is lacking. The members of the State parliament expressed their wish to be in control themselves, and not to leave all the work in the hands of INGOs. In their experience INGOs leave after a couple of years, and therefore they prefer a closer collaboration between INGOs and local organizations, to hand over expertise focused on long-term development. However, although support to integrate mental health into Primary Health Care (PHC) was seen as important by the members of the State Parliament, there seemed to be a low sense of motivation to do so among state policy makers: policy makers working within the State Ministry of Health (SMoH) seemed reluctant to be involved in this process. For example, while discussing the integration of mental health, policy makers often supported the idea that HealthNet TPO should take actions for change, not the SMoH. So, the final responsibility for this process was often pushed aside to the INGO, rather than taking up the responsibility as a governmental institution.
5.3.1.2 Shortage in human capacity There is a shortage of human capacity on both the lower and the higher levels of care. In Wau city, at higher levels of care, there are no health care providers specialized in mental health. Medical doctors are capable to recognize severe mental health problems and epilepsy, but have difficulties in providing treatment, due to a high patient load, a lack of knowledge on psychosocial interventions and a lack of medication. Although there is some knowledge on pharmaceutical treatment, knowledge on psychotherapy is limited. Furthermore, medical doctors seemed less willing to provide mental health care compared to medical personnel at lower levels of care (the next paragraph will focus more on primary health care providers). Most of them said they would not have enough time, due to a high patient load in the hospital and multiple professional obligations. For example, some medical doctors were also running a private clinic, as a single salary is not enough:
“..[t]he issue is not the doctors, they are underpaid. So I [cannot] depend on the government’s money… I will not go and specialize in the field that will not get me money. (…) For example this one… I wake up at four and treat my clinic. I come back home at nine or ten at night. Imagine I don’t stay at my house. If I don’t work like that my children will not get a proper education.” [4]
Knowledge about mental health care among primary health care providers (certified nurses, community health workers) was very low. And for this reason health care providers working in PHCCs or PHCUs felt incapable to take care of patients with mental health problems, as they are lacking the means to treat their patients, such as knowledge and psychotropic medicines. In the interviews they always indicated a need for training, as they had no idea about the causes, treatment, and management of mental illnesses. Furthermore, there was a very low level of awareness on (the existence of) biomedical treatment options among primary health care providers. This could partly be due to the fact that in Wau city psychosocial and pharmaceutical treatment options are very limited. At the time of research there were few primary health care providers that had received the mental health training by HealthNet TPO (Box 1, page 32). However, this training mainly contributed to mental health awareness and less on mental health care in practice. Also, because of an absence
52 of on-the-job training, the unavailability of psychotropic drugs and a lacking referral system, the implementation of mental health care remains limited. Furthermore, although severe mental illnesses should be diagnosed by trained staff, there is no place to refer patients to. Supervision on the quality of mental health diagnoses was absent. So, primary health care providers said it is impossible to manage severe cases, as they are lacking knowledge, drugs and referral options.
5.3.1.3 Low mental health awareness and low demand for mental health care As mentioned before, there is low awareness among community members about mental health problems and possible treatment options.
“If you [researcher] can tell us then we know. Is it by air, or through food? We don’t know how people get affected.” [24]
Low awareness is likely to be related to a low demand for mental health care, as mental health problems might not be recognized and knowledge about biomedical treatment options is limited. Although people are more likely to seek any kind of health care for severe conditions (e.g., frequent epileptic convulsions), community members indicated that the primary health care units or centers are not specialized enough to provide care for these severe conditions.
According to health care providers working at different layers, PHCUs, PHCCs and hospitals receive only a small number of patients with specific mental health problems, leaving out the number of patients with unrecognized complaints. Mental health problems are not specifically recorded in the health management information system (HMIS), which makes it hard to track exactly how many patients with mental illnesses are attended to.
During the fieldwork visits the number of patients that came to the primary health care facility per day (not restricted to mental health care) was often very low. Sometimes patients had already stayed away for days, because they heard medication was not delivered and medical treatment was thus unavailable. There were a few health facilities that only received three patients a day. In addition, during fieldwork it was observed that clinics often opened much later than their official opening hours. There were some clinics that were closed when we arrived (well before closing time) and often staff members were absent without notice given. Health care providers become less motivated when a low number of patients come to the clinic for help. Low staff motivation may in turn lower the number of patients traveling a long distance, while ‘risking’ the possibility to find the clinic closed.
5.3.2 PERCEIVED OPPORTUNITIES
Health care providers and policy makers were also asked about opportunities for integrating mental health into the current health system or for ways to develop mental health care in the region. The following list is comprised of perceived opportunities by health care providers and policy makers, as derived from semi-structured interviews and FGDs.
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5.3.2.1 High need for training, potentially with a high outcome The most common response to questions about ways to improve mental health care was that training for health care providers and key figures in the community, such as chiefs, is urgently needed. Community members also indicated how youth could play an important role in mental health care at the community level, for example in the mobilization of community members. Primary health care providers, in contrast to overburdened medical doctors who have a specialization other than psychiatry, were willing to take up mental health care activities. The importance of training lower level health staff is illustrated by the quote of one of the medical doctors:
"Yeah counselling is I think is an important part of the treatment. Yeah not only giving medicine. But if you train somebody… not that medical doctor. Because the medical doctor will run away. Yeah. But (laughing) you train somebody… a nurse… a social worker… who is there always. (…) He’s a social worker, he is nothing else, and cannot become a medical doctor. He will always… concentrate… I mean… on counsel[ling].” [4]
Furthermore, according to medical doctors the demand for mental health care is too low for a person to specialize in that field. So although the estimated prevalence of mental illness in (post) conflict South Sudan is high, the (conscious) demand for mental health care is low:
“[Y]ou [will] also be redundant… redundant… you will not have a lot of work. Because as I told you… only one case per month, or two cases… in six months and so on. If you train someone only specific for mental health cases you will have no job to do. You just sit there – do nothing.” [2]
Therefore, the integration of mental health care would be a better solution. In the experience of trainers, health care providers working in the PHCCs and PHCUs are eager to learn about mental health care. This also applies to policy makers working in other institutions, such as the Legislative Assembly. Members of parliament expressed a willingness to be part of mental health awareness raising campaigns in Jur River County, and so to be more involved in the development of their communities.
5.3.2.2 Building on existing community structures In addition, chiefs and youth expressed a willingness to learn more about mental health and to take part in supporting mentally ill community members. The chief’s role already includes counselling, such as mediating in marriage problems. Therefore, community members and chiefs themselves saw involvement of the chiefs (e.g., in training, mobilization, counselling, advice) as a logical extension of their responsibilities. In addition, it was often proposed to address youths as ‘mobilizers’. They are active members of the community and therefore it was perceived to be a suitable task for them to go to villages, informing people about mental health problems and the availability of treatment. It is likely that by raising awareness in the communities about mental illnesses, their impact, and the options for treatment, the demand for mental health care will also increase.
5.3.2.3 Psychotropic drugs In the experience of psychiatrists, the most severe mental health cases can be helped by making psychotropic drugs available at the primary health care level:
“At PHC level, my expectation is that, as long as we have drugs… those people with severe conditions can be helped most.” [1]
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Although primary health care providers were lacking knowledge on the prescription of psychotropic drugs, all of the interviewees requested the delivery of these medicines. This was especially requested for epilepsy. However, most forms of epilepsy are very ‘visible’ (e.g., tonic-clonic seizure) and thus noticed by members of the community. Therefore, it might be that people requested for these drugs because this disorder is easily recognized.
However, drug supply is a challenging task in the rural areas. Dependency on INGOs is high, while INGOs have limited elbow-room to implement programs due to a lack of clear policies on mental health. This problem of dependency on INGOs specifically was also expressed by the members of State Parliament, who wished to have responsibilities shifted from INGOs to local initiatives. There could be opportunities for the private sector as well, such as pharmacies to sell psychotropic drugs, as to increase access to mental health care. However, it should be further researched what would be needed for pharmacies to sell these drugs (e.g., legal aspects, demand for psychotropic drugs, its effect on free drug provision in hospitals).
Link with informal health care The importance of the informal health care sector was acknowledged by the majority of formal health care providers. Some had concrete ideas about a way to collaborate with the informal health care sector, such as including them in the referral system and involve them in detection of cases and management of mild mental illnesses:
“Normally we encourage them to collaborate, because they can help the patients for many months. When the patient is wasting… because we know very well traditional healers can treat diseases like convulsion disorder, like depression, mild depression, they can treat as a result of (…) mental disharmony.” [2]
Others merely acknowledged the fact that people consult informal healers first, rather than going to a health facility, but did not see them as part of a shared health system. However, in the BPHS (MoH, 2011) the traditional health system is acknowledged as one of the four pillars in the country’s health system. That the traditional health system is mentioned as one of the four health pillars of South Sudan, seems not to have any practical implications yet.
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Chapter 6: Discussion and conclusion
This study explored mental health care in South Sudan from three perspectives: availability of mental health services, accessibility of mental health services and opportunities and challenges for integrating mental health services into primary health care. In this chapter the main findings of this study are discussed against the backdrop of the theoretical framework. It is the aim of this chapter to provide an answer to the main research question: How can we efficiently integrate mental health into primary health care in Jur River County? Furthermore, recommendations for action and further research are discussed.
KEY POINTS There is a large treatment gap in South Sudan, especially for rural areas such as Jur River County. Specialized mental health care is disproportionately distributed across the country. Access to mental health care is challenged in different ways. Patients with mental health problems face both structural and attitudinal barriers, which prevent them access into the health system. There is a low sense of agency among community members and local authorities to make decisions about (mental) health planning. However, at the community level, there is a window of opportunity to integrate mental health services into primary and informal/community health care. Recommendations are formulated in relation to the lowest levels of care, such as informal and self-care, the primary health care system, and policy. These recommendations are directed at HealthNet TPO and related organizations and agencies. This study raised new questions for research, such as possibilities to collaborate with informal health care providers. It is recommended that further research will be carried out to (stronger) collaboration with the informal health system, and to opportunities for the private sector (which remained relatively unexplored in this report).
6.1 CONCLUDING REMARKS ON FINDINGS
Only around one third of people worldwide who suffer from mental illness do receive adequate mental health care. This treatment gap is estimated to be larger for low- and middle-income countries and needs are expected to be higher in countries affected by conflict (Mental Health Group, 2007; De Jong, Komproe & Van Ommeren, 2003). This study explored mental health care in the context of South Sudan, the world’s youngest country affected by different conflict outbreaks. It sought to answer the question how we can efficiently integrate mental health into primary health care in Jur River County.
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6.1.1 AVAILABILITY
Discussion The health system of South Sudan is structured around four pillars: the public, the private, the NGO/FBO, and the traditional health system (MoH, 2011). This study specifically focused on the possibility of integrating mental health services in lower levels of care, including the primary health care system and informal services (Figure 1, page 11). Thus, less focus was placed on more specialized levels of care, which are not within reach for the inhabitants of Jur River County.
Both formal and informal treatment options are common practice. However, in Jur River County or Wau city, there is no mental health specialist or unit in general hospitals, nor in Wau Teaching Hospital. Although medical doctors in the area do see patients with mental health problems, there is no specific ward or available treatment protocols for mental illnesses. Inherent to the absence of a mental health specialist is the absence of a well-defined referral system. In Juba there are biomedical treatment options available for mental illness, but these services are out of reach for the people living in Jur River County. In addition, we failed to identify community mental health services in the area. So, it seems that formal mental health services in Jur River County are very restricted. Mentally ill patients have to be referred to Juba to find these services.
In the sample of health facilities, staff members of 10 health facilities had been trained on mental health care by HealthNet TPO. At the moment of study, detection and referral by primary health care providers was restricted due to a lack of supervision, knowledge and availability of psychotropic drugs (at higher levels of care). Only trained staff members were able to detect common mental health problems. Thus, many facilities did not meet the service norms for mental health care, as stated in the basic package for health services (see section 1.3.2, page 9; MoH, 2011). Countrywide, some INGOs are working on the provision of mhGAP based mental health care. However, HealthNet TPO is the only organization in Jur River County implementing mental health programs on the community level. Alternative healers in the area are witch doctors, spearmen and traditional healers.
Conclusion With only two psychiatrists and a few (clinical) psychologists working in Juba, specialized mental health care is disproportionately distributed across the country. There is a large treatment gap for mental illness in South Sudan, especially in rural areas such as Jur River County. There are over 140,000 inhabitants in the county, but there are no primary or secondary health care providers with a background in mental health available. In the capital Juba mental health services are offered in at least two hospitals and the prison, which hosts an inpatient clinic for chronic and aggressive mentally ill patients. In Wau, the second largest city of the country, there are no specialized mental health services and mental health services in general hospitals or primary health care services are very limited.
Mental health care in general hospitals is challenged by low human capacity, a high patient load and a lack of equipment, supplies and psychotropic medicines. Health care providers at lower levels of care have few resources to treat patients with mental health problems. Low mental health literacy among primary health care providers (e.g., background knowledge on mental illness, awareness on possible treatment options) restricts detection and referral. Patients primarily depend on their
57 families, and often turn to informal community services, such as informal doctors (i.e., witch doctors, spearmen, traditional healers), or other community members (i.e., family members, chiefs). These lower levels of care play an important role in many African societies (e.g., Sorketti et al., 2011; Uwakwe & Otakpor, 2014). For example, Ventevogel and colleagues (2013), who studied a community in Jur River County, found that family and community interventions are preferred in case of depression related symptoms.
6.1.2 ACCESSIBILITY
Discussion Health care seeking pathways were discussed against the backdrop of mental health problems as they were observed and described by the community. Among the most frequently discussed mental health problems were ‘madness’, epilepsy, mood-related problems, suicidal behaviours and substance abuse.
Low awareness about mental health problems and their treatment among community members decreases conscious demand for mental health services. Epileptic cases were sometimes registered at the clinic (e.g., in clinic’s registration book), but these numbers were not reported in the HMIS system. Patients visiting for mental health problems were not (systematically) recorded in the registration book, nor were they reported in the HMIS system. This observation could be the result of a low conscious demand, because community members may be unaware of mental health problems and treatment options. In addition, it may also be the result of low mental health literacy among primary health care providers, leaving mental health problems undetected and thus unreported. Hugo and colleagues (2003) also found that unawareness of mental illness lowers demand for health care services. In general, externalizing problems (e.g., aggression) and epilepsy were more likely to be seen as a mental illness than internalizing problems (e.g., depression, anxiety).
According to community members, people often seek informal health care for mental illnesses, which counteracts with their opinion that formal health care services are the best option. Patients normally try out many different treatment options, both in formal and informal health structures. There are different reasons (not) to consult informal and formal health care providers. The absence of mental health services in the clinics, more trust in traditional healing practices and low awareness about mental health problems and biomedical treatment options are main reasons for the high use of locally available treatment resources, such as traditional healing.
Lastly, constraints to access health care were explored, in which transport, a lack of financial resources, stigma around mental health problems and unfamiliarity with formal treatment options in the rural areas were the main barriers to access formal health care. Andrade and colleagues (2014) made a distinction between structural barriers (here: lack of transport, lack of financial resources, language barrier) and attitudinal barriers (here: negative prior experiences, stigma or shame). They observed that attitudinal barriers were most important for people with mild mental illnesses, whereas structural barriers dominated for people with severe mental illnesses. In this study similar results were found. Externalizing problems were often seen as a real ‘mental illness’ for which help
58 was sought at either formal or informal health care levels, whereas people with (mild) internalizing problems were not seen as ill and thus help was not sought.
Conclusion Access to mental health services is challenged in different ways. A main challenge is the low mental health awareness among community members, contributing to a low demand of mental health care (e.g., low ‘push’ factor). In addition, low mental health literacy among (local) health care providers leaves mental health problems undetected and untreated (e.g., low ‘pull’ factor). These factors contribute to the fact that most patients who suffer from mental illness do not get into the health system. Especially for communities living far from health facilities, help is sought with community members and informal health care providers.
6.1.3 FEASIBILITY
Discussion Stakeholders, such as health care providers and policy makers, were asked about perceived challenges and opportunities to integrate mental health care into primary health care. Health care providers at different levels of the South Sudan health system, ranging from mental health specialists to community health workers, contributed to the discussion about the feasibility of integrating mental health care into primary health care.
Challenges mostly related to structural difficulties, such as a lack of political commitment, a shortage of human capacity in the field of mental health, and a low awareness among community members, were stated. Low political commitment at the national level restricts implementation of mental health services at all health care levels. State or county level policy makers expressed a low sense of power with respect to influencing policy. Also primary health care providers expressed a low sense of control or ‘ownership’. They highly depend on what comes to the facility (in terms of information and drugs supply). In general, respondents found the lack of human capacity (i.e., staff trained on mental health) at both primary and secondary levels of care a challenge for the integration of mental health care. Without training and necessary equipment (i.e., protocols, medication) formal mental health care service delivery is not possible. Awareness of mental health problems is very low among community members, which affects detection of mental illnesses at the community level.
The following opportunities for the integration of mental health care services were reported by stakeholders: the willingness of primary health care providers and other community members for task-shifting and training, the possible effect of drug delivery and possibilities in establishing a strong link between the formal and informal health care system. This last opportunity was pointed out by stakeholders since many community members make use of informal health services.
Training of health care providers and drug delivery at lower levels of public health care were found to be the most important steps needed for the integration of mental health into current health services. Health care providers felt incapable of taking care of a mentally ill patient without having any background knowledge and equipment. However, as Pérez-Sales and colleagues (2011: 352) point out, “training per se, without a framework and a global plan, creates frustration and discourages
59 people in the short term”. Furthermore, training should not only focus on primary health care providers, but also target key figures in the community such as chiefs, thereby building on existing community structures.
Willingness to be involved in mental health care delivery (e.g., through increasing of knowledge, taking up a caretaking role towards the patient) was generally higher among primary health care providers and key community figures than among health care providers at higher levels of care. In addition, stakeholders focused strongly on opportunities related to the delivery of psychotropic drugs. However, while drugs are necessary for the treatment of those who do not respond to psychotherapy and counselling (e.g., in case of epilepsy or severe mental illnesses), pharmacological treatment demands systematic organisation, such as linking organisations and clinics that treat epilepsy, training of nurses, and ensuring a stable drug supply (e.g., Newman, 2011).
Working on a link between formal and informal health care providers was suggested by some health care providers as a way to improve mental health services (e.g., improved referral system, early detection, case management). Informal treatment was seen as a ‘social treatment’ which might contribute to biomedical treatment.
Conclusion Stakeholders provided information on different levels of health care organization. Through low political commitment at higher levels of authority, there are no local policies available or implemented. There is a low sense of ownership and agency among community members and local authorities, whereby health facilities are seen as ‘owned’ by the national government and (I)NGOs. Stakeholders see opportunities in active involvement of key community members (e.g., chiefs, primary health care providers) for the improvement and dissemination of health care services. Furthermore, they see drug delivery as one of the most necessary resources.
6.2 RECOMMENDATIONS FOR THE INTEGRATION OF MENTAL HEALTH INTO PRIMARY HEALTH CARE IN JUR RIVER COUNTY
As part of this study, health care providers, policy makers and community members expressed their view on mental health care integration. In section 6.1.3 these views have been further discussed. In this section, recommendations based on these views are provided for the integration of mental health care at the community level.
The mhGAP states that non-specialized health care providers are able to offer interventions for common mental disorders, including epilepsy and substance abuse. In a process of task-shifting trained primary health care providers can diagnose mental illnesses, initiate treatment for these diseases and carry out follow-up visits. In case of more complex mental illnesses, referral to and supervision by higher levels of mental health care are provided. This process leads to an increased access to mental health services. Although the mhGAP often refers to lower levels of care, the framework addresses the total health system. In line with the findings of this study, recommendations are presented in order to enhance mental health integration into primary health care in Jur River County. The recommendations are stated generally, but have been formulated from
60 the perspective of a (mental) health NGO. In other words, the recommendations provided are formulated against the backdrop of what is feasible for HealthNet TPO as well as for other mental health related organizations’ and agencies’ programming.
Challenges specific for HealthNet TPO HealthNet TPO is, under the DCR program, active in Jur River County since 2011.16 Mental health program activities primarily focused on the lowest levels of care (i.e., community and self-care) and primary health care. One of the challenges is limited technical support from the organization’s headquarters for the Mental Health program in South Sudan. At the time of study, there was one person based in Wau who is responsible for the implementation of mental health activities in Jur River County, without the back-up of a focal person in the headquarter for mental health programming in South Sudan. However, shortly after this study was conducted, a technical advisor in Juba had been assigned. What seems lacking is a clear mental health strategy leading the mental health programs in South Sudan, that can direct and connect all mental health activities in the country. Lastly, the DCR program is ending in December 2015, which restricts possibilities for program implementation in the short period remaining. In this section, recommendations based on the mhGAP guidelines and the previous findings are discussed. Recommendations for HealthNet TPO, DCR member organizations and related agencies working on mental health care in South Sudan, are classified per level of mental health care (as presented in the pyramid of mental health services; WHO, 2005).
6.2.1.1 LOWEST LEVELS OF CARE: INFORMAL COMMUNITY CARE AND SELF-CARE
1) Raise awareness within communities through mental health campaigns In order to ‘pull’ people into the health care system, it is necessary to address mental health illiteracy (e.g., through use of film, radio talks, theatre). Mental health awareness is low among community members, which contributes to stigma, a reduction in mental health seeking behaviour due to shame and ignorance and low awareness about treatment options.
2) Raise mental health literacy among key figures within the community Apart from raising awareness among community members in general, raise mental health literacy among key figures within the community, such as chiefs and teachers. Include these key figures, and groups such as youth, in activities aimed to lower the threshold of getting access to (mental health) services. For example, youth were often put forward for mobilization of other community members and for spreading (mental) health messages in villages far from the health facilities, whereas chiefs can intervene with counselling or help community members in getting (access to) care.
3) Establish and enhance self-help groups HealthNet TPO successfully established self-help groups, such as the Stepped Family Care program. Continued support for these groups is necessary, such as follow up (inventory of (changed) needs, observed problems in or by the self-help group), to facilitate the groups’ functioning. At the moment the support seems too short or insufficient, because no active self-help group was seen during this study.
16 See appendix B; HealtNet TPO was already present in Jur River County in 2009 under the MFS-I program.
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Self-help groups are local initiatives, working on primary prevention and early detection of mental health problems. These groups can be trained on detection of common disorders by the use of vignettes (e.g., PRIME17). Such groups need to be actively established and should receive long(er)- term support from the organization. However, solely focussing on raising awareness and improving detection, and thereby creating expectations, is unethical if psychosocial or pharmacological treatments cannot be ensured (e.g., Pérez-Sales et al., 2011).
For example, HealthNet TPO has set up resource mapping and mobilization (RMM) projects in various communities in Burundi.18 These projects are aimed at rebuilding social cohesion and enables community members to address and work on (mental health related) problems as observed in the community. In order for these groups to be established, HealthNet TPO works with community committees. For further mental health programming in South Sudan it is recommended to use the organization’s experience with the successful implementation of self-help groups and mental health programs in similar contexts, such as Burundi.
4) Establish a link between the informal and formal health systems People in the rural areas are more likely to consult informal health care providers and are less known with formal levels of care. In practice informal health care providers and primary health care providers have established a link (through referral to each other) and in policies the informal health care sector is acknowledged to be part of South Sudan’s health system. However, no official link is made to aide referral pathways or to exchange knowledge. Using existing networks such as informal healers may contribute largely to social support and self-help within the community, as well as improved access to formal levels of care.
5) Build upon existing relationships and structures Since 2009 HealthNet TPO is working in Jur River County and has been actively involved with the local communities (e.g., through close contact between community members and HealthNet TPO’s community development officers). Long-term relationships have been established and as a result community members know the organization very well. For further implementation of mental health programs the organization should build upon existing structures and relationships. For example, it is recommended to lay less emphasis on people who are part of the ‘official health system’, and more on (capacity building of) existing structures within the community, as they may be a more powerful way to make mental health services accessible. Possible target groups can be key figures in the community who perceive it as their task to ‘take care of their community’, rather than focusing on health care providers only. Traditional healers are already part of the informal layer of health care, and they offer, according to the reports of many community members, successful treatments. On the other hand, chiefs are not included in the informal health care system, while these naturally respected figures in the community see it as an extension of their work to counsel other community members. Addressing these key persons in awareness campaigns or even training might create a strong network for the implementation of mental health programs and, more specifically, psychosocial support. Newly identified people who fulfil a certain task (e.g., HealthNet TPO’s field
17 http://www.prime.uct.ac.za/ 18 Pamoja project under DCR: http://healthnettpo.bi/hntpo/index.php/projets-fr/projet-pamoja-fr
62 facilitators who help in mental health awareness raising campaigns in their own communities) might be less powerful than key persons in existing powerful structures (e.g., chiefs).
6.2.1.2 MENTAL HEALTH SERVICES IN PRIMARY HEALTH CARE
6) Offer a learning path; not a single training At the moment mental health services in the primary health care system are very restricted. A mental health training organized by HealthNet TPO has increased mental health literacy among health care providers. However, to instil clinical skills, training should be combined with on-the-job training, supervision, materials adapted to the local context (e.g., referral forms, assessment tools such as vignettes) and a clear referral pathway (e.g., Pérez-Salez et al., 2011). Psychotropic drug provision is a challenging task in the context of South Sudan. Therefore, the training should have a strong focus on psychosocial interventions, so that the prescription of drugs can be avoided for those who can be helped with psychotherapy. Lastly, a practice-oriented participatory training method, building on the experience and knowledge of the participants, is recommended. In this way local attitudes and experiences can be taken into account while creating mental health services in the community.
7) Include secondary health care providers in training Ideally, there would be a mental health specialist based in one of Wau’s hospitals, in order to give (psychotropic) treatment and to function as a point of referral for primary health providers. However, in absence of mental health specialists in Wau, medical doctors and nurses working in the secondary level of health care in Wau should be included in the mental health training.
8) Psychiatric and epileptic patients: drugs In order to treat patients with severe psychiatric or epileptic disorders, psychotropic drugs are a necessity. The mhGAP shows how severely ill patients can be treated at lower levels of care with generic drugs. However, drug delivery in general is highly challenging (e.g., continuation of drug supply, possible low demand might lead to out-dated medicines), and should only be initiated when primary health care providers are supervised and trained on-the-job. The other way around, training health care providers on various interventions without providing the tools (e.g., drugs) is also highly ineffective.
6.2.1.3 POLICY
9) Involve policy makers in mental health programming Policy makers on the state level expressed to have relatively little influence on policy development and decision making. Policies are developed on the national level and are organized in a top-down manner. However, involving state policy makers, such as the members of the State Parliament, in campaigns and mental health programming in Jur River County, could contribute in putting mental health on the state agenda. Advocacy among stakeholders is needed to put mental health on both the national and state agenda.
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6.3 RECOMMENDATIONS FOR FURTHER RESEARCH
10) Contextualization of the mhGAP This study brought up new issues for further research on the integration of mental health into primary health care. This study focused on the current state of mental health care and opportunities for its integration into lower levels of care. However, the mhGAP states that the guidelines have to be contextualized: “mhGAP provides a template for an intervention package that will need to be adapted for countries or regions within countries, on the basis of the local context” (WHO, 2008: 4). Further research should therefore focus on the contextualization of the mhGAP-IG in rural areas of South Sudan, as well as on its adapted version to humanitarian settings, the mhGAP-HIG. For example, applied research on the implementation of the mhGAP guidelines with respect to disorders prioritized by community members (e.g., epilepsy) is recommended. For example, Abdulmalik and colleagues (2013) adapted the mhGAP-IG to the specific context of Nigeria. In addition, vignettes have been used in Nepal to implement mental health programs (i.e., PRIME consortium). Use of such tools to increase detection of mental illnesses at the community level could also be applied to the context of South Sudan.
11) Theory of Change development In line with the previous recommendation, developing a Theory of Change (TOC) together with stakeholders might be a next step for integrating mental health. A workshop to develop such a TOC was initially planned during this study, but was cancelled due to socio-political tensions during the period of implementation. In a TOC a group of experts set out a ‘pathway to change’. It is a tool that enables people to develop solutions for complex social problems (See: Anderson, www.theoryofchange.org, consulted on 23 Dec 2014). It enables people to reflect on implicit assumptions and on existent models that might be relevant for the current situation (Valters, 2014). Valters (2014: 1) furthermore states that in “the international development industry (…) critical reflection on these assumptions is essential; in one (more limited) sense so that interventions ‘do no harm’, and more optimistically to ensure they genuinely improve the lives of those at the receiving end”. A TOC thus enables people to deconstruct basic assumptions that underpin interventions, instead of only ‘being critical’ towards our own world views (Valters, 2014). In further research a TOC can be used as a broader approach to think about the integration of mental health in PHC (see Jordans et al., 2013).
12) Further research on informal and private health care sectors Furthermore, this study highlighted the importance of the informal health care system. This study did not specifically focus on the traditional health system (i.e., informal health system), as well as on the private health system. However, these two health systems seem to be important pillars of health care in Jur River county, as people try various treatment options in the absence of clear (formal) mental health care services. People never mentioned having consulted a health care provider in a private clinic, and it was not further explored whether this is because private clinics do not offer (psychosocial) treatment, or due to other reasons (e.g., costs of treatment). However, private pharmacies reported to sell psychotropic drugs (such as diazepam) on a monthly basis. In addition, the household survey showed that people often buy drugs (for general health problems) from private pharmacies directly, without consulting a health care provider first. Therefore, it is suggested to further explore opportunities of the provision of psychotropic drugs through private pharmacies. This
64 study has shown that informal health care providers play a prominent role in the communities. Traditional doctors, witch doctors and spearmen are often consulted for different types of illness, including mental health problems. Further research may focus on opportunities to establish a more pronounced link between formal and informal health care services. Informal health care providers may be involved in detection and management of mental health problems, including referral to (and from) formal health care services.
6.4 CONCLUDING REMARKS
This study sought to explore how mental health services can be integrated into primary health care, with the aim to increase access to mental health care. The study was conducted against the backdrop of the mhGAP-IG, a model intervention guide for low- and middle-income countries where access to treatment options and mental health specialists is limited. However, up-scaling mental health services might not be applicable to extremely resource poor contexts such as the rural areas in South Sudan. Based on this study, it is proposed to organize mental health activities at the community level, thus within the community and by the community. It is recommended to focus on existing power relations within the communities (i.e., on people who are ‘naturally’ trusted and respected), rather than limiting mental health care to the formal health system. This can be done through inter alia skill- transfer (i.e., task-shifting), the establishment of self-help groups and raising awareness. However, raising awareness on mental illnesses and treatment options creates expectations among community members, which is unethical if psychosocial or pharmacological treatments cannot be ensured. Therefore, it is strongly suggested to cooperate with other related organizations (e.g., as a point of referral) and to advocate for mental health care to improve mental health services in the long-term.
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28. Roberts, B., Damundu, E. Y., Lomoro, O., & Sondorp, E. (2009). Post-conflict mental health needs: a cross-sectional survey of trauma, depression and associated factors in Juba, Southern Sudan. BMC Psychiatry, 9, 1-10.
29. Saraceno, B., & Dua, T. (2009). Global mental health: the role of psychiatry. European Archives of Psychiatry and Clinical Neuroscience, 259, 109-117.
30. Sorketti, E. A., Zainal, N. Z., & Habil, M. H. (2011). The characteristics of people with mental illness who are under treatment in traditional healer centres in Sudan. International Journal of Social Psychiatry, 58, 204-216.
31. Siriwardhana, C., Adikari, A., Van Bortel, T., McCrone, P., & Sumathipala, A. (2013). An intervention to improve mental health care for conflict-affected forced migrants in low-resource primary care settings: a WHO MhGAP-based pilot study in Sri Lanka (COM-GAP study). Trials, 14, 1-7.
32. Uwakwe, R., & Otakpor, A. (2014). Public mental health – using the mental health gap action program to put all hands to the pumps. Frontiers in public health, 2, 1-5.
33. Valters, C. (2014). Theories of change in international development: communication, learning, or accountability? The Justice and Security Research Programme: London.
34. Ventevogel, P., Jordans, M., Reis, R., & De Jong, J. (2013). Madness or sadness? Local concepts of mental illness in four conflict-affected African communities. Conflict and Health, 7, 1-16.
35. Wakabi, W. (September 2006). Peace has come to southern Sudan, but challenges remain. The Lancet, 368, 829-830.
36. White, R. G., & Sashidharan, S. P. (2014). Towards a more nuanced global mental health. The British Journal of Psychiatry, 204, 415-417.
37. The World Bank (2015). Economic overview, accessed 13 November 2015, http://www.worldbank.org/en/country/southsudan/overview
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38. World Health Organization (2000). Promoting the role of traditional medicine in health systems. Strategy for the African region. WHO. AF/RC50/R3 Resolution.
39. World Health Organization (2005). The optimal mix for services for mental health: WHO pyramid framework, accessed 10 July 2015, www.who.int/mental_health/policy/services/2_Optimal%20Mix%20of%20Services_Infosheet.pd f
40. World Health Organization (2005). Assessment instrument for mental health systems (WHO- AIMS) version 2.2. WHO Press: Switzerland.
41. World Health Organization (2008). Scaling up care for mental, neurological and substance use disorders. WHO Press: France.
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Appendix A: Dutch Consortium for Rehabilitation
The Dutch Consortium for Rehabilitation (DCR) is a collaborative venture of four non-governmental organizations (HealthNet TPO, Save the Children, CARE and ZOA), currently implementing a 5-year program financed by the Dutch Ministry of Foreign Affairs. Figure 4 presents DCR’s organizational structure, specified for South Sudan only. The DCR aims to contribute to greater stability and sustainable economic growth in these six (post)conflict countries. Activities include improving basic services, creating employment opportunities, and strengthening civil society (http://dcr- africa.org/en/ consulted on 5 Dec 2014). The DCR works together with communities in 6 fragile states on the rehabilitation of service delivery and local economies. These countries are South Sudan, Burundi, DR Congo, Sudan, Liberia and Uganda. In each country one of the four consortium members is the leading organization. In South Sudan Save the Children has the lead, and HealthNet TPO and ZOA are the additional program managers.
Organizational Dutch Consortium for Rehabilitation structure Knowledge Network (HealthNet TPO) Advocacy (Save the Children) Communication (CARE) M&E (ZOA)
↙ ↙ ↓ ↓ ↘ ↘
Country South Sudan Burundi DR Congo Sudan Liberia Uganda
Leading organization (Save the Children) (HealthNet TPO) (ZOA) (CARE) (ZOA) (Save the Children)
Active organizations HealthNet TPO, Save the Children, ZOA Not further specified here Themes Knowledge Network, Advocacy, M&E
Figure 4. Organizational structure of DCR in South Sudan
The purpose of the DCR Knowledge Network (KN) is to effectively formulate evidence-based recommendations and lessons learned, and to help put these lessons into practice in the ongoing work. The KN consists of around 50 staff of the four agencies in the consortium, its partners in the field, and several Universities around the world. For 2012-2013, the following themes had been selected for applied research: (1) Local development; (2) Accountability of local governance; (3) Inclusion of the poorest; (4) Conflict sensitivity; (5) Adult literacy and livelihoods; and (6) Partnership.
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Appendix B: HealthNet TPO
HealthNet TPO is a Dutch aid agency that works on health in areas disrupted by war or disasters. ‘Health’ is used both as a goal and means: the goal is to reach accessible health care for all. By working on that together with local communities ‘health’ is used as a means to bring people together and to restore mutual trust (HealthNet TPO website, December 2014).
HealthNet TPO works in five counties in South Sudan: Jur River County, Wau County and Raja County (Western Bahr el Ghazal), Aweil North County (Northern Bahr el Ghazal) and Bor County (Jonglei State). HealthNet TPO’s work in all three counties is supported by the Health Pooled Fund (HPF), which is a consortium working on the development of South Sudan’s primary health care system. DCR supports (mental) health activities implemented by HealthNet TPO in Jur River County. In Aweil North specifically HealthNet TPO conducts activities on reproductive health in cooperation with KIT and CORDAID.
HealthNet TPO has been present in South Sudan since 1996 (at that time as HealthNet International) and works on disease control, health systems development, mental health and psychosocial care (MHPSS). HealthNet TPO specifically focuses on mental health, basic services, sexual and reproductive health rights (SRHR), and HIV/Aids. Before the merger of HealthNet International (HNI) and the Transcultural Psychosocial Organization (TPO) in 2005, both organizations have been working on (mental) health care in what is now the independent state of South Sudan.
Background of HNI’s work in the area HNI has actively been working in (South) Sudan since 1996, when it started with coordinating activities of NGOs for the reduction of River Blindness in former southern Sudan. In 1996 HNI worked on the implementation of a basic package of health services (BPHS) in Western Upper Nile. This work was handed over to MSF Holland in 1998. From 2002-2004 HNI supported Operation Lifeline for Kala Azar disease control in collaboration with the WHO.
Background of TPO’s work in the area TPO has been running programs in the area since 2002, while working with Sudanese refugees in Uganda since 1994. Before the merge in 2005 TPO implemented two psychosocial programs in (South) Sudan: a community and school based psychosocial program (Kajo Keji) and a psychosocial program based in a PHCC in Yei in cooperation with St. Bakhita.
Figure 5 presents a timeline with an overview of all activities related to mental health and psychosocial support. Of some of the programs mentioned only the mental health aspect is pointed out.
Since the merger in 2005 HealthNet TPO is active in Western Bahr el Ghazal through TMF funding, which was continued with the MFS-I and MFS-II funding in January 2009 until December 2015. The programs included the encouragement of the State Ministry of Health (SMOH) to take charge over the health system development, including the establishment of a County Health Department (CHD) for direct health care management of Jur River County. Apart from the integration of psychosocial services into the health system, other components of the program include inter alia the UNICEF
71 expanded Program for Immunization (EPI) and the distribution insecticide-treated nets to pregnant women. MHPSS activities were implemented in Yei (Central Equatoria State) in 2005 and included community awareness on social problems, basic mental health care treatment, training of community health workers and teachers in psychosocial and mental health care, and psychosocial care for children. This was done in cooperation with St. Bathika PHCC and through ECHO funding.
Figure 5. Timeline Mental Health Activities HealthNet TPO in South Sudan19,20,21,22
19 TMF: “Thematische Medefinanciering”, fund of the Netherlands’ Ministry of Foreign Affairs 20 ECHO: European Union for Humanitarian Aid and Civil Protection 21 BSF: Basic Services Fund (round 1: 2006-2008, round 2: 2007-2008, round 3: 2009-2010, round 4: 2010-2011, round 5: Jan-Dec 2012) 22 MFS II: Sixty-seven Dutch development organizations received funding for the period 2010-2015 under the MFS II fund.
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Appendix C: Health Facility Survey
0. Source Data Date of visit Interviewer Health facility name Health facility type □ PHCC □ PHCU County Payam Boma Village 1. Respondent Profile 1.1 Name of respondent 1.2 Gender □ Male □ Female 1.3 Age of respondent ___ years 1.4 Position of (approx if actual age unknown) respondent 1.5 Length of work period of (Number of months) ___ 1.6 Educational level □ Informal education respondent of respondent □ Primary education □ Secondary education □ Tertiary education (institution or University) □ Primary education not completed / no education □ Other: ____
2. Health Facility 2.1 How many days a week is this facility opened for Days: ___ to ___ patients? Working hours: ___ to ___ 2.2 How many people are working for this health Total number of PHC workers: ___ facility? PHCC: ___ Clinical officer(s)/medical Note: number of people employed at the moment assistant(s) ___ (Community certificated) nurse(s) ___ (Community) midwife(s)___ Nutritionist(s) ___ Laboratory assistant(s) ___ Pharmacy assistant(s) ___ Other: ___ PHCU: ___ Community health worker(s) ___ MCHW(s) ___ Statistical clerk(s) ___ Dispenser(s)/assistant(s) ___ Other: ___ 2.3 How many people are working in this facility per (Total number of PHC workers per day): ___ day? Note: Number of people on the days that the facility is open 3. Mental Health 3.1 How many people are trained for mental health Total number of PHC workers trained: ___ care (e.g., awareness, detection) within this health PHCC: ___ Clinical officer(s)/medical facility during the past year? assistant(s) ___ (Community certificated) nurse(s) ___ (Community) midwife(s)___ Nutritionist(s) ___ Laboratory assistant(s) ___ Pharmacy assistant(s) ___ Other: ___ PHCU: ___ Community health worker(s) ___ MCHW(s) ___ Statistical clerk(s) ___ Dispenser(s)/assistant(s) ___ Other: ___
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3.2 How many patients have come for Total number of patients: problems/complaints related to mental health in A) Gender ___ females the last three months? ___ males □ Not available B) Age group ___ < 18 yrs □ Not available C) Tribal group ___ Neur ______Dinka Angwa ___ Shilluk k ___ Nuba ______Balenda Felata ___ Pojulu ______Bongo Bari ___ Jur Luo ______Nyima Kakwa ___ Brun ___ Nyang wara ___ Kuku ___ Burun ___ Other: ____ □ Not availab le D) Religion ___ Christian ___ Muslim ___ Other: ____ □ Not available 3.3 How many patients have been treated for Total number of patients: mental illness in the last three months? A) Gender ___ females ___ males □ Not available B) Per age group ___ < 18 yrs □ Not available C) Per tribal group ___ Neur ______Dinka Angwa ___ Shilluk k ___ Nuba ______Balenda Felata ___ Pojulu ______Bongo Bari ___ Jur Luo ______Nyima Kakwa ___ Brun ___ Nyang wara ___ Kuku ___ Burun ___ Other: ____ □ Not availab le D) Per religion ___ Christian ___ Muslim
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___ Other: ____ □ Not available E) Per diagnosis ___ Depression ___ Bipolar disorder ___ Psychosis ___ Epilepsy ___ Dev./behav. (children/adolesc.) ___ Alcohol/drug use disorders ___ Self-harm/suicide ___ Medically unexpl./emot. compl. ___ Other: ___ □ Not available 3.4 What was the average number of contacts for (Average number of contacts per person): ___ mental health patients in the last three months? □ Not applicable 3.5 Are any of the psychotropic medicines of the Generic antidepressant medication □ Available; national medicine list (BPHS, 2007) available in this (amitriptyline, fluoxetine) ___ facility? □ Not - Generic antidepressant medication available □ Don’t know (amitriptyline, fluoxetine) Generic anti-anxiety medication □ Available; - Generic anti-anxiety medication (diazepam; (diazepam) ___ tablets/injections) □ Not - Generic anti-psychotic medication (haloperidol available tablets/injections) □ Don’t know - Generic anti-epileptic medication Generic anti-psychotic medication □ Available; (phenobarbital, carbamazepine, diazepam inj, (haloperidol) ___ valproic acid) □ Not - Generic antiparkinsonian medicine (biperiden) available □ Don’t know □ Available; Note: Hospitals should have all psychotropic Generic anti-epileptic medication ___ medicines, PHCC only anti-anxiety and anti-epileptic, (Phenobarbital, carbamazepine, diazepam, valproic acid) □ Not according to recommended medicine list (2007). available PHCU not! □ Don’t know Generic antiparkinsonian medication □ Available; (biperiden) ___ □ Not available □ Don’t know 3.6 Who are allowed to prescribe psychotropic □ No one medication within this facility? □ Don’t know PHCC: ___ Clinical officer(s)/medical assistant(s) ___ (Community certificated) nurse(s) ___ (Community) midwife(s)___ Nutritionist(s) ___ Laboratory assistant(s) ___ Pharmacy assistant(s) ___ Other: ___ PHCU: ___ Community health worker(s) ___ MCHW(s) ___ Statistical clerk(s) ___ Dispenser(s)/assistant(s) ___ Other: ___ 3.7 How many people are trained on (the delivery (Number of people): ___ of) psychotropic medication in the past year? 3.8 How many people are trained on (the delivery (Number of people): ___
75 of) psychosocial (non-biological) interventions in the past year? 3.9 Did you get referrals from other clinics or □ Yes (Number of patients in last 3 months): ___ private practitioners (e.g., PHCUs, traditional (Name/place of facilities/practitioners): ___ healers) for patients with mental illness? □ No 3.10 Is this facility routinely collecting data on □ Yes, but not for mental Checklist / HMIS / Other: patient information (mental health specifically)? health specifically ______□ Yes, also for mental health Shared with: ______□ No
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Appendix D: Pharmacy survey
0. Source Data Date of visit Interviewer Pharmacy name Pharmacy type □ Pharmacy whole sale □ Pharmacy □ Drug store County Payam Boma Village 1. Pharmacy Information 1.1 How many days a week is the pharmacy opened for Days: ___ to ___ customers/patients? Working hours: ___ to ___ 1.2 Are any of the psychotropic medicines of the national medicine list (BPHS, 2007) available in this store? o Generic antidepressant medication □ Available; ______South Sudan Pounds (amitriptyline, fluoxetine) □ Not available per ______□ Don’t know o Generic anti-anxiety medication □ Available; ______South Sudan Pounds (diazepam; tablets/injections) □ Not available per ______□ Don’t know o Generic anti-psychotic medication □ Available; ______South Sudan Pounds (haloperidol tablets/injections) □ Not available per ______□ Don’t know o Generic anti-epileptic medication □ Available; ______South Sudan Pounds (phenobarbital, carbamazepine, diazepam inj, □ Not available per ______valproic acid) □ Don’t know o Generic antiparkinsonian medicine □ Available; ______South Sudan Pounds (biperiden) □ Not available per ______□ Don’t know o Others: □ Available; ______South Sudan Pounds ______□ Not available per ______□ Don’t know 1.2b Was there a shortage of any type of psychotropic □ No medication in this pharmacy in the last three months? □ Yes, specify: ______1.3 How often do you sell psychotropic medication? □ Never □ Few times a □ < Once a month week □ Once a month □ Daily □ Once a week □ Don’t know □ Not applicable 1.4 Do people always come with a prescription? □ Yes, always □ They mostly come with a prescription, but some people buy it without prescription □ Sometimes, but most people buy without prescription □ No, never 1.5 Is this pharmacy routinely collecting data on patient □ Yes, but not for Checklist / HMIS / Other: information (mental health specifically)? psychotropic medication ______specifically Shared with: ______□ Yes, also for mental health □ No
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Appendix E: Health Seeking Behaviour survey
0. Source Data Date of visit Name of interviewer Position interviewer Organisation name Payam Boma Village Position from HF No ___ 1. Respondent profile 1.1 Name of respondent 1.2 Gender □ 1 Male □ 2 Female 1.3 Age of respondent 1.4 What is your □ 1 Resident (Approx if actual age unknown) residence status? □ 2 Returnee □ 3 Refugee □ 4 IDP □ 5 Other: ______1.5 How many people live in Total number of people: ____ this household in total? (eat Children < 1 yr: ____ from the same place) Children 1-5 yrs: ____ Children 6-14 yrs (school age): ____ Adults 15-49 yrs (reproductive): ____ Adults >50 yrs: ____ 1.6 Do you or your family have □ 1 Disabled person/ caring for 1.7 Are you a member □ 1 IGA group □ 6 HFC any particular vulnerability? disabled family members of any other □ 2 VSLA □ 7 (Multiple answers possible) □ 2 Female HH (no husband/ community group? □ 3 Women’s ADC/BDC divorced/widowed) (Multiple answers group (not □ 8 □ 3 Child HH possible) farmers group) Other: □ 4 Caring for orphans □ 4 Youth group ______□ 5 Other: ______□ 5 PTA ______□ 6 None of the above □ 9 None of the above 1.8 How many people are (Number of HH members): ___ 1.9 What is the main □ 1 Farming working in the household? source of income for (agriculture/fishing/animal the household? keeping) (One option only) □ 2 Business □ 3 Casual laborer □ 4 Civil service (e.g., teacher, police officer) □ 5 Other: ______2. Illness Episodes (past 30 days) 2.1 Were you or any other household member ill □ 1 Yes □ 2 No (If no, verify with question 3.1 and 4.1) during the last 30 days? 2.2 Please give the age and sex of the sick household Person 1: Age: ___ years Sex: □ 1 Male □ 2 Female member Number of days sick: ___ days What were the main symptoms? ______Person 2: Age: ___ years Sex: □ 1 Male □ 2 Female Number of days sick: ___ days What were the main symptoms? ______Person 3: Age: ___ years Sex: □ 1 Male □ 2 Female Number of days sick: ___ days What were the main symptoms? ______
Interviewer explains: “In the next section I will ask you some questions about the sick household member(s). I will start asking you some questions about household member 1”
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3. Health Seeking Behavior (past 30 days) Household member [1] 3.1 How often did you buy drugs directly from a pharmacy/drug store/shop (Number of times): ___ without consultation during the last 30 days for this household member? □ I did not buy drugs directly from a drug Note: Without consultation means that the person bought drugs without going to store ( Continue with question 3.4) a health facility first 3.2 How much did you pay in total for the drugs you bought directly from the ______South Sudan Pounds pharmacy/drug store for this household member? 3.3 Why did you buy drugs directly from the pharmacy/drug store without □ 1 Cheaper consultation and not from a health facility with consultation? □ 2 Faster □ 3 Health facility is too far Note: Ask as an open question and then tick the right box; □ 4 Staff in health facility not present Multiple answers possible □ 5 Not satisfied with the health facility □ 6 Better quality of drugs □ 7 Consultation was perceived as unnecessary □ 8 Other: ______3.4 Did you seek health care in a health facility for this sick □ 1 Yes household member in the past 30 days? □ 2 No, why? □ 1 No money □ 2 Not so seriously ill □ 3 No transport □ 4 No person available to join the patient □ 5 Head of HH decided not to Note: Ask as an open question and then tick the right box go □ 6 Other reason: ______(continue with the next household member, or Part 5) 3.5 Was this household member’s diagnosis confirmed by your medical care provider? □ 1 Yes □ 2 No 3.6 Where did you seek health care for this household □ 1 PHCU (Name/place: ______) member? □ 2 PHCC (Name/place: ______) □ 3 Hospital (Name/place: ______) Note: Multiple answers possible □ 4 Private clinic (Name/place: ______) □ 5 Witch doctor □ 6 Traditional healer / medicine man □ 7 Religious healer □ 8 Other: ______3.7 What were your main reasons for seeking health care □ 1 The service is nearby with this health care provider? □ 2 The quality of the health facility is good (clean rooms, drugs, ...) Note: Ask as an open question and then tick the right box; □ 3 Low costs of the health services Multiple answers possible □ 4 I have trust in the knowledge/skills of the health care provider □ 5 The health provider speaks my language/understands the local culture □ 6 Other: ______3.8 Were there any diagnostic tests done for the household member? (Multiple answers possible) □ 1 Yes (specify below) □ 2 No If so, what type of test? □ 1 Blood □ 2 Urine □ 3 Feces □ 4 Saliva □ 5 X-ray □ 6 Ultrasound □ 7 Other test; ______3.9 What treatment has the household member received? (Multiple answers possible; specify below) □ 1 Drug treatment (Name): ______□ 2 Advice/Health Education □ 3 Surgical treatment □ 4 Admission □ 5 Other: ______3.10 Has the household member been referred to another health facility? □ 1 Yes, namely (Name/place): ______□ 2 No 3.11 In case drugs were prescribed: Where have you purchased the drugs □ 1 Obtained in the health facility itself that were prescribed by the health care provider? □ 2 Bought in a pharmacy/drug store/shop □ 3 Not applicable 3.12 In case drugs were prescribed: How did you pay for the drugs? □ 1 Direct □ 2 I did not pay □ 3 Don’t know □ 4 NA 3.13 How much did you have to pay for the (Total): 1 ______SSP □ 2 Don’t know treatment in total? (Consultation): 1 ______SSP □ 2 NA □ 3 Don’t know Can you specify the costs spent? (Medicines): 1 ______SSP □ 2 NA □ 3 Don’t know □ 4 (Diagnostic tests): 1 ______SSP Pharmacy Note: NA means “Not applicable” (Admission/surgery): 1 ______SSP □ 2 NA □ 3 Don’t know □ 2 NA □ 3 Don’t know 3.14 How have you managed to cover the costs for □ 1 I managed without any problems this household members’ treatment? □ 2 I needed to take a loan/borrow it from someone □ 3 I sold something □ 4 I managed to pay it, but with (great) difficulty
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□ 5 I abandoned treatment, because I could not afford it □ 6. Not applicable 3.15 How is the present situation of this sick □ 1 Fully recovered (no symptoms left) household member? □ 2 Symptoms decreased, but did not disappear □ 3 Symptoms persisted with the same intensity □ 4 Symptoms increased □ 5 The household member died If there were more household members sick in the last 30 days, tell the respondent: “I will now ask you the same questions for the other household member(s)” If no one else was sick, tell the respondent: “I will now continue with some questions about mental health” 4. Mental Health 4.1 Have you ever heard someone in the community talk about mental health problems? □ 1 Yes □ 2 No 4.2 Have you ever attended a mental health awareness raising campaign? □ 1 Yes □ 2 No 4.3 Do you know someone in your family or village that □ 1 Yes suffers from mental health problems? What mental health problem does the person/do these people have? Person 1:______Person 2:______Person 3:______□ 2 No 4.4 Where do people go to for help for mental health □ 1 PHCC/PHCU problems in your area? □ 2 Private clinic/hospital □ 3 Hospital Note: Ask as an open question and then tick the right box; □ 4 Witch doctor Multiple answers possible □ 5 Traditional healer/medicine man □ 6 Religious leader □ 7 Other: ______□ 8 I don’t know 4.5 In your opinion, what is the best place where people □ 1 PHCC/PHCU should go for help for mental health problems? □ 2 Private clinic/hospital □ 3 Hospital Note: Single answer only □ 4 Witch doctor □ 5 Traditional healer/medicine man □ 6 Religious leader □ 7 Other: ______□ 8 I don’t know 5. Reproductive Health 5. 1 Is there a woman in this household who had a delivery in the past 24 months? □ 1 Yes □ 2 No Preferably this part of the survey should be completed by the woman/one of the women who had a delivery in the last 24 months. If there were multiple deliveries, ask for the most recent one. Who is answering the questions regarding reproductive health? □ 1 The woman who delivered □ 2 Another HH member 5.2 When was your/the woman’s delivery? Date: ___/___/_____ (dd/mm/yyyy) or (approximately) ___ months ago 5.3 How is the present condition of this child? □ 1 The child died during the delivery Note: Ask as an open question, then tick one of the □ 2 The child was born alive, but died later categories. □ 3 The child is alive up till now 5.4 Where did you/the woman deliver? □ 1 At own home/home of another person □ 2 In a PHCU □ 3 In a PHCC □ 4 In the hospital □ 5 Other: ______5.5 What were your/the woman’s main reasons for □ 1 The service is nearby going to this health facility/stay at home for the □ 2 The quality of the health facility is good delivery? □ 3 Low costs of the health services □ 4 I have trust in the knowledge and skills of the health service Note: Ask as an open question; provider(s) Multiple answers possible □ 5 Availability of female staff member(s)
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□ 6 Availability of a separate delivery room □ 7 Te health service providers speak my language and understand our culture 5.6 Who helped you/the woman with the delivery? □ 1 No one □ 2 A friend or relative □ 3 A traditional birth attendant (TBA) □ 4 A community health worker □ 5 A trained midwife/nurse/medical doctor □ 6 Other: ______5.7 How much did you/the woman have to pay for □ Nothing this assistance during the delivery? □ Something, namely: _____ South Sudan Pounds 5.8 Did you/the woman have any medical controls □ 1 Yes, (number of controls): ___ during pregnancy during you pregnancy? (e.g., health status baby) □ 2 No 5.9 Where did you/the woman go to for these medical controls of the pregnancy? □ 1 PHCU □ 2 PHCC □ 3 Hospital Note: Multiple answers possible □ 4 Another place: ____ 5.10 How much did you/the woman have to pay for □ Nothing these control visits? □ Something, namely: ___ South Sudan Pounds per control visit
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Appendix F: Interview guide for semi-structured interviews
Prevalence - Most frequent cases - Priority disorders (depression, anxiety, PTSD, suicidality) - Causal factors/stressors (for risk developing mental disorders)
Current practices - Protocols related to mental health - Psychosocial interventions - Medication; provided by who, expenses, policy - Referral; how often, where to, adherence patients - Follow-up; how often, where, by whom, adherence patients
Working towards integration mental health - Ideas about integrating mhGAP guidelines (in general) - The role of this facility in provision of mh care (also: attitude) - The role of policy in integrating mental health - Barriers/hindering factors - Facilitating factors
Patients - Health seeking behavior - Constraints to get access to (mental) health care - Social support - Follow-up: adherence - Role of alternative/traditional practitioners
Policies and legislation - Last policies - Status Mental Health Department; activities, goals - Status Development of Guidelines for Mental Health Services in SS - Developments in mental health legislation
Patients/detained persons - How long do they stay? - Who brings them here?
Mental health - Do community members observe mental illness/mental health problems in the community? - How is mental illness presented?
Mental health care - Where should people with mental illness go? - Role of PHC facilities
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- Role of traditional healers/religious leaders/community members - What can we do to help people with mental illness?
Social support - What would you do if you knew someone with mental health problems? - Do people with mental illness get support from family, friends or other community members?
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Appendix G: Overview health facilities Jur River County
Table 4. Original List of Health Care Facilities in Jur River County Assigned number Facility name Facility type Payam 1 Kangi PHCC Kangi 2 Alelthongy PHCU Kangi 3 Dhekou PHCU Kangi 4 Ajugo PHCU Kangi 5 Warrieth PHCU Kangi 6 Mapel PHCC Kuajiena 7 Kuajiena PHCC Kuajiena 8 Chono PHCU Kuajiena 9 Maranya PHCU Kuajiena 10 Mbili PHCU Kuajiena 11 Medil PHCU Kuajiena 12 Achongchong PHCC Marial Bai 13 Alelchok PHCU Marial Bai 14 Kuom PHCU Marial Bai 15 Maluil PHCU Marial Bai 16 Marial Bai PHCC Marial Bai 17 Marial Ajieth PHCU Marial Bai 18 Eastern Bank PHCC Rocrocdong 19 Achot PHCU Rocrocdong 20 Akrok PHCU Rocrocdong 21 Rocrocdong PHCU Rocrocdong 22 Wadalel PHCU Rocrocdong 23 Udici PHCC Udici 24 Abou PHCU Udici 25 Atido PHCU Udici 26 Barakol PHCU Udici 27 Barurud PHCU Udici 28 Baryar PHCU Udici 29 Gette PHCU Udici 30 Kayango PHCU Udici 31 Tharkueng PHCC Wau Bai 32 Adet PHCU Wau Bai 33 Mabior PHCU Wau Bai 34 Nyinakok PHCU Wau Bai 35 Thilic PHCU Wau Bai 36* Kapara PHCU Kuajiena 37* Mapel Military PHCU Kuajiena 38* Agur PHCU Kuajiena * Facilities excluded due to non-functionality at the time of research or because not supported by the DCR and HPF program.
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Appendix H: Consent form
Study number: ......
Consent form
A. Introduction: We request you that you read this form and ask any questions you may have before agreeing to be in the study.
This study is being conducted as part of the Dutch Consortium of Rehabilitation by Anne de Graaff of HealthNet TPO (Research and Development Department).
B. Study purpose: The purpose of this study is to get a better understanding of South Sudan’s health care system and how mental health care could be integrated into primary health care services. If you choose to participate in this study, this means that you agree to be interviewed by the researchers of HealthNet TPO.
C. Risks of study participation Taking part in this research will have no foreseeable consequences or risks for the participant. However, in a study like this, there is a risk that study questions could feel embarrassing. We shall try not to ask questions that will embarrass you. If you feel that a particular question or test is embarrassing, there is no requirement that you answer the question. There is no risk of the release of information from this interview because records will be kept safe and not shared with anyone else. Reports about this research will not reveal your identity.
D. Benefits of study participation Participation in this study will help us to better understand how best to organize mental health care provision in Jur River County. It is the aim of this study to improve mental health services for people with mental illness.
E. Alternatives to study participation You are participating in this interview voluntarily. You have the right to withdraw from this interview at any time as you wish. This will be without any consequences.
F. Study costs/compensation You will not incur any costs in participating in this study. All your travel expenses shall be reimbursed in full.
G. Confidentiality The records of this study will be kept private. In any publications or presentations, we will not include any information that will make it possible to identify you as a subject. Any study data that is to be
85 transmitted via the Internet will not have any information which will allow you to be identified.
H. Contacts and questions If you have any questions about this research study, please contact the responsible investigator Anne de Graaff at [email protected] (0924153271). You can also contact the country director of HealthNet TPO Dr. George Lutwama (0956324351).
I. Consent A copy of this consent form will be given to you to keep.
The consent form (point A through I) has been explained to me and I give consent to take part in the study. I understand that by signing this consent form, I do not waive any of my legal rights. Signing this consent form indicates that I have been informed about the research study in which I am voluntarily agreeing to participate. I will be given a copy of this form for my records.
Name of informant
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Signature or fingerprint of informant Date
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Name of person administering consent form
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Signature of person administering consent form Date
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Appendix I: Overview of respondents
Semi-structured interviews Juba Interview Gender Position number 1 Male Psychiatrist 2 Male Psychiatrist/neurologist, lecturer 3 Female Psychiatrist
Semi-structured interviews Wau Interview Payam Boma Gender Position number 4 Wau Wau Male Director general State Ministry of Health 5 Wau Wau Male Medical director Wau Teaching Hospital 6 Wau Wau Male Medical officer Wau Teaching Hospital 7 Wau Wau Male Medical doctor Wau prison & Director Wau prison 8 Wau Wau Female Nurse
Semi-structured interviews Jur River County Interview Payam Boma Gender Position number 9 Kangi Kangi Male Nurse 10 Kuajiena Mbili Male Community health worker 11 Kuajiena Mapel Male Nurse (in-charge) 12 Marial Bai Achongchong Male Nurse 13 Rocrocdong Eastern Bank Male Nurse 14 Rocrocdong Wadalel Male Community health worker
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Focus group discussions Interview Payam Boma Gender Position number 15 Wau Wau 4 males Members of parliament 1 female 16 Kangi Alelthongy 5 males Chief, health care providers, members HFC 1 female and women’s group 17 Kuajiena Mbili 4 males Payam administrators, sub-chief, secretary 1 female sub-chief, member women’s group 18 Kuajiena Kuajiena 4 males Honorable, village sub-chief, boma administrator, payam administrator 19 Kuajiena Kuajiena 4 males Members youth group and BDC 20 Kuajiena Mapel 4 males Field facilitator, mobilizer, members HFC 1 female 21 Kuajiena Mapel 4 males Payam administrators, chiefs, visitor 22 Marial Bai Achongchong 1 male Members HMC 3 females 23 Marial Bai Alelchock 2 males Home health promotor, chairperson 1 female committees, member women’s group 24 Wau Bai Gette 15 males Chief, police officers, visitors chief’s compound
In-depth interviews Jur River County Interview Payam Boma Gender Position number 25 Kangi Kangi Female Grandmother of patients 26 Marial Bai Alelchock Male Husband of patient 27 Wau Bai Nyinakok Male Father of patient 28 Udici Udici Male Traditional healer/spear man
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Appendix J: Demographics overview (health seeking behavior survey)
Table 5. Geographical information Payam Boma N (%) Kangi Alelthongy 36 (7.6) Kangi 36 (7.6) Total 72 (15.2) Kuajiena Kuajiena 35 (7.4) Mbili 33 (6.9) Mapel 36 (7.6) Total 104 (21.9) Marial Bai Achongchong 36 (7.6) Alelchock 30 (6.3) Total 69 (14.5) Rocrocdong Eastern Bank 36 (7.6) Wadalel 30 (6.3) Total 66 (13.9) Wau Bai Tharkueng 35 (7.4) Nyinakok 26 (5.5) Total 65 (13.7) Udici Udici 35 (7.4) Bararud 30 (6.3) Gette 34 (7.2) Total 99 (20.8) Total 475 (100.0)
Table 6. Gender and Age of Respondents Agea Gender N (%) Mean (SD) Range Males 150 (31.6) 37.33 (12.307) 18-70 Females 322 (67.8) 34.11 (10.545) 18-76 Total 472 (99.4) 35.28 (11.295) 18-76 Missing 3 (.6) 46.67 (19.732) 24-60 a 11 missings for Age (3 males and 8 females)
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Figure 6. Gender of Respondents Figure 7. Age of Respondents
Figure 8. Main Source of Income Figure 9. Residence Status
Table 7. Number of people in household Mean SD Min Max Missing Children <1 yrs .55 .629 0 4 0 Children 1-5 yrs 1.61 .990 0 8 0 Children 6-14 yrs 1.75 1.229 0 7 2 Adults 15-49 yrs 2.45 1.272 0 10 1 Adults >49 .53 .762 0 6 2 Total 6.88 2.824 1 18 0
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Figure 10. Number of People Living in Household Figure 11. Number of Children Below 1 Years Old
Figure 12. Number of Children 1-5 Years Old Figure 13. Number of Children 6-14 Years Old
Figure 14. Number of People Reproductive Age Figure 15. Number of People Above 50 Years Old
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Table 8. Family vulnerabilty N (%) % of cases (total) Taking care of a disabled person 46 (9.6) 9.7 Female headed household 18 (3.7) 3.8 (no husband, widowed, or divorced) Child headed household 1 (.2) .2 Taking care of orphans 18 (3.7) 3.8 Other 21 (4.4) 4.4 None of the above 377 (78.4) 79.5 Total 481 (100.0) 101.5
Figure 16. Percentage of Families with Vulnerability
Table 9. Member of community group N (%) % of cases (total) IGA group 24 (5.0) 5.1 VSLA group 6 (1.2) 1.3 Women’s group 10 (2.1) 2.1 Youth group 12 (2.5) 2.5 PTA 23 (4.8) 4.9 HFC 20 (4.2) 4.2 BDC 18 (3.7) 3.8 Other 12 (2.5) 2.5 None of the above 356 (74.0) 75.6 Total 481 (100.0) 102.1
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Figure 17. Percentage of Respondents Who are Community Group(s) Members
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