Breaking down barriers to mental health services in Jordan
Using design research to learn from users’ experiences
After surviving a bombing during the Syrian civil war, Ihsan, a 33-year-old man, fled his home with his wife and two children. Now in Jordan, Ihsan finds that he is extremely sensitive to sudden noises, which cause him to jump and relive the bombing experience. After six months, his wife, who sees and hears him scream while asleep, urges him to seek treatment. Ihsan then embarks on a multi-phased journey, which begins with a visit to a general practitioner to prescribe him sleeping pills. The GP refers him to a mental health clinic. Unable to overcome the stigma associated with that, Ihsan instead visits a traditional healer and a sheikh. A year later, when his symptoms have become unmanageable, he agrees to go to a mental health clinic for help. He receives several months of treatment for post-traumatic stress disorder, including medication. Ihsan is lucky that the first medication prescribed was fairly effective, and he felt he could manage the side effects. When his case is closed at the clinic, he is referred to another organization. While he is past the crisis period, he still has problematic symptoms and would like to continue his path to recovery. However he cannot afford to pay for transportation to the clinic and stops receiving care.
Ihsan is not alone.
The mental health needs within refugee communities
Unsurprisingly, mental health is a particular challenge for refugee populations. In addition to the initial strain and distress associated with fleeing, prolonged displacement has been shown to compound the original trauma. When people face protracted immobility following displacement, they are at greater risk for common mental health disorders than the general population, with research indicating that 30 to 40% of displaced communities may be affected by mental health problems.
In contexts of crisis, the World Health Organization (WHO) reports:
People experiencing displacement are less likely to access mental health services than the general population: 86% of refugees reside in low to middle income countries where 75–80% of refugees in need do not receive appropriate services. This is due to issues in both supply (only 2% of health providers in these contexts are trained in mental health) and demand (for example, stigmatization of mental health issues).
Untreated mental health challenges have far-reaching impacts. The Harvard School of Public Health estimates that the global cost of mental health conditions in 2010 was at $2.5 trillion, with the cost projected to surge to $6.0 trillion by 2030. These challenges are also associated with problems like substance abuse, a host of non-communicable diseases, and a general lack of self-care. The effects do not stop with the patient, either. Mental health disorders can and do impact children, leading to enduring negative outcomes across generations.
We are interested in targeting people experiencing light to moderate distress. If we could effectively address challenges before they get worse, people like Ihsan might never progress to needing the more dedicated care. Put another way, our particular target population requires services that lie in the second and third tier of the Inter-Agency Standing Committee’s Mental Health and Psychosocial Support (MHPSS) Intervention Pyramid, shown below.
These services do exist in Jordan. Out of the approximately 35 organizations collectively delivering mental health services, programs and activities for communities across the country, 38% and 21% of the activities focused on the second and third tiers of the intervention pyramid, respectively. However, with close to 680,000 registered Syrian refugees in Jordan, these services are not able to meet the scale of the need.
Given the availability of evidence-based Mental Health and Psychosocial Support interventions, Airbel seeks to develop ways to deliver these services at scale. We aim to test 4–5 early stage prototypes to identify and understand the best and most effective ways of delivering existing mental health services, with an explicit focus on ensuring they align with the behaviors, attitudes and practices of the affected community. As a first step, we conducted design research to understand the barriers refugees face in accessing mental health services.
Critical to this effort is the Community Design Group, made up of former Mahali Community Innovation Lab participants who have been trained in design research, and Our Step, a patients’ advocacy group. The Community Design Group led the field research, while the patients’ group was critical to our developing the personas and understanding the overall system of care from a patients’ perspective.
We wanted to know: how exactly do displaced populations manage the psychological stressors that affect their daily lives? Who do people seek care from, both informally and formally? Are those actors able to help? How do people perceive the symptoms or expressions of mild and moderate mental health disorders? What influences whether people will try and access formal mental health services? What are possible ways to overcome the stigma and silence around mental health, and how do communities treat people with mental health challenges?
We conducted interviews and focus group discussions with both community members, service delivery organizations and formal and informal service providers. Initial ideation workshops have helped us develop a set of user personas and archetypes and prioritize the challenges people face as they attempt to address their mental health issues. The joint nature of the process has been extremely useful, allowing us to hear and incorporate people’s real, lived experiences related to accessing (or not accessing) mental health services. Our personas thus reflect the full spectrum of people’s demographic backgrounds, clinical needs, and mental health service journeys.
The user journeys describe the key insights. Barriers to access can be broadly grouped, for instance, into four categories: a lack of awareness of services; lack of awareness of mental health issues; lack of access to services; and lack of trust in mental health services. Often, people face a combination of these barriers. Effective interventions will thus have to be comprehensive and flexible.
Take the case of Rana, a 14-year old girl who fled with her family from her home in Syria in 2015, eventually arriving in Jordan. Two years later, after enduring painful bullying and discrimination in school, she and her family decide that she should drop out. That same year, at age 16, Rana’s parents arrange for her to be married to a man fourteen years her senior. Two years into her marriage, Rana enrolls in cosmetology classes offered by a local community-based organization (CBO); her somewhat controlling mother-in-law accompanies her. After successfully getting a part-time job, she faces abuse from her husband, who struggles to accept this new reality. He takes her salary while verbally and sometimes physically abusing her. Rana withdraws, begins having crying spells and resorts to feigning sickness in front of her family to avoid having to spend time with them. Eventually, Rana returns to the CBO, where she is referred to an internal case manager who provides support to victims of gender-based violence. When a neighbor sees Rana at the CBO, she tells Rana’s mother-in-law, who — fearing for her family’s reputation — forbids Rana from returning.
Then there is Um Mustafa, a 51-year-old Syrian woman who fled in 2015 with her family of nine. In Jordan, she works as an office cleaner. As the head of her household, Um Mustafa is constantly worried about how to meet her family’s needs and expenses. When she develops high blood pressure, she seeks cash assistance from various organizations but she is told she does not meet the eligibility requirements for this kind of aid. Um Mustafa eventually takes on a second job and seeks peace in Quranic reading sessions. When she falls ill, she is worried about having to go into debt for her own treatment, but equally worried that if she does not get better she have to stop work. Her anxiety gets worse, and she feels worried all the time. She feels she is not in control, and lashes out at her children although she has never done that in the past.
These personas and their journeys have highlighted the importance of clearly recognizing and responding to the complex landscape of mental health service barriers.
We have also developed stakeholder personas to help us understand the perspectives of service providers, both informal and formal. Our profiles of a volunteer, a counselor at a CBO, a case manager at an NGO, a psychologist at an NGO and a project coordinator help us understand things like their availability and skill-level. We can see, for instance, that already overburdened psychologists and case managers would not be able to extend themselves much further. Scaling up would thus require an innovative way to equip volunteers and counselors to provide some of these services.
We also know that many people are providing support informally, for example, friends and families, religious leaders, and pharmacists. Understanding more about each of these actors allows us to think through how they can be enlisted to help the person experiencing distress access the appropriate care.
Now that we have understood more deeply about what the problem looks like from these different perspectives, the next step is to design solutions that build on people’s existing practices to transform how we deliver these services.
