The World Health Organization (WHO) clearly states that complete emotional and mental well-being are critical components of good health care. Efforts to improve access to mental health services continue to generate global attention as an estimated one in eight people lived with a mental disorder before the COVID-19 pandemic. While mental health continues to gain attention, inclusive mental healthcare — that ensures no one, including people with disabilities (PWDs) is left behind — is lacking.
The US Centers for Disease Control and Prevention (US CDC) puts some perspective on the importance of providing inclusive mental health services. It says adults with disabilities report experiencing frequent mental distress almost 5 times as often as adults without disabilities. This is probably due to the discrimination they face from both community and sometimes family members, as shown by a World Bank rapid assessment on disability inclusion in Nigeria.
A key recommendation from the assessment requires adults who have recently developed a disability to have access to rehabilitation services, including mental health, psychosocial and reintegration support. It is also important that PWDs know where and how to get this mental health treatment and other support services and resources, including counselling or therapy, says the US CDC.
Jela’s Development Initiatives (JDI) is a non-profit that has, since 2019, implemented interventions across several social issues including mental health. The JDI Mental Health Initiative helps provide psychosocial support services through counselling sessions to unearth the causes of depression and emotional instability and consequently reduce suicides.
‘Unburden’ is one of their mental health initiatives where individuals have access to free monthly group therapy sessions, experts, and a safe, judgement-free space where they can break the culture of silence and find possible solutions. The vision of the project is to get as many people signed in from the public to attend and give them a forum to unburden and just talk, having free access to a mental health expert.
They have had over 10 group therapy sessions including sessions for private organisations; and reached 136 people from 2019 to 2021 despite COVID-19 disruptions. The planning and execution process also helped build the JDI team’s capacity and confidence to start exploring other ways of making the meetings more inclusive. According to Angela Ochu-Baiye, JDI’s founder and Chief Executive Officer, this is because they wanted the challenge of going into a new space. Also, “we wanted an opportunity to learn and be able to share what we learnt with the society and play our part in the conversation of inclusion,” she added. Beyond the service provision part of the initiative, the knowledge-sharing component is important because the World Bank’s rapid assessment recommends improving data collection on disability related issues.
With financial support from the Liliane Foundation through the Leprosy Mission Nigeria, the JDI team designed a mental health project targeting youths with disabilities and their family members/caregivers. They received the funds as part of the Leprosy Mission’s Inclusion First Project. It is safe to say that for JDI, ‘opportunity met preparation’.
Clustering and unburdening
“Our aim was to provide psychological support for youths with disabilities and create a system that will safeguard their mental health,” said JDI’s Programme Officer, Rita Akhabue. She noted that they worked with six clusters of PWDs of 14 participants each, made up of the visually impaired, the deaf, persons affected by dwarfism, people living with sickle cell disease, persons with albinism and persons affected by leprosy. To populate the clusters, Akhabue said they partnered with associations that represent the PWDs, like the Joint National Association of Persons with Disabilities, the Impact sickle cell anaemia foundation, the Albino foundation, and others. This made the process of onboarding them and their family members or caregivers, a seamless one.
While there are contentions about including sickle cell warriors as PWDs, Winifred Otokhina, the Chief Operating Officer of Tony May Foundation, clarified that it is indeed a disability because “sickle cell is a disorder that affects the red blood cells and according to WHO and CDC, blood and inherited disorders are listed as disabilities,” she said.
Experts like Adeniyi Ojuope, a Developmental Psychologist with Elite Life Consulting provided guidance and offered suggestions on how to handle some of the challenges participants shared. To ensure strict confidentiality, all participants (including the JDI team and psychologists) signed a confidentiality agreement legally binding them from disclosing the stories shared. Ojuope said evidence shows it is helpful for people dealing with mental health issues to know that they have someone they can speak to. “It assures them that their concerns are valid and gives them a platform to share,” adding that clustering them in small groups helps them feel safe, supported and comfortable enough to open up.
Akhabue said it was critical to involve family members in the sessions as they go through mental health challenges as caregivers. Secondly, it was important to help the caregivers understand how the PWDs feel. “That’s why we targeted the PWDs’ family members so they can know how to take care of them (PWDs) and be [more] patient with them,” she added.
This strategy did not work as some of the participants were not forthcoming with their caregivers present. The JDI team then changed strategy by swapping the caregivers and PWDs, pairing them with other PWDs and caregivers. This, Akhabue said, made a difference because the whole idea was to help the caregiver understand the PWDs’ difficulties and behaviors, so that they may be more supportive
Sharing for change
The therapy sessions reached 345 participants who shared challenges ranging from isolation, inhumane treatments, extortion, discrimination in workplaces and denial of educational opportunities, among others. Shola, who has a hearing impairment said during prayers in church, the clergy would pray that everyone gets a promotion at work, growth in business or other areas of life endeavour. However, for her and others like her, the prayer always revolves around healing from the condition. “Is it that they think we don’t want to be successful too? Why don’t they pray that we also get jobs and get married?” she asked during one of the 15 sessions held by JDI in Abuja and Lagos, as part of the project.
Living with a disability can negatively affect a person’s mental health, and the exclusion and discrimination that some of PWDs experience can further aggravate their condition, JDI stated in their end of project report. Confirming this statement, Suzan Kelechi, genetic counsellor and disability inclusion advocate said “they [PWDs] don’t have peculiar mental health needs but their probability of having mental health issues is heightened in Nigeria persistently because we face stigma, discrimination and barriers to accessing basic social services and economic opportunities on an equal basis.”
For her, adequate attention is not given to the mental health needs of persons with disabilities because “it is only when society clearly understands your existence and peculiarities that necessary interventions can be made”.
Though the ‘Unburden’ group therapy sessions remained an integral part of the project, the JDI team, understanding the importance of the media in driving important civic conversations, infused advocacy campaigns into the project by involving influential media personalities in advocacy walks to raise public awareness, media engagements, surveys, and mental health assessments. They also documented the stories of consenting participants to help provide evidence for further advocacy.
The therapy sessions were held in central locations in Lagos State and the Federal Capital Territory (FCT), therefore most of the PWDs were transported from their communities to the meeting venues. As a result, logistics was a huge challenge. In one instance, a group had to terminate their journey halfway through and return home because they had an accident on their way. Akhabue hopes that future interventions will be taken to them to increase reach and encourage more participation. They also faced some language barriers and because this wasn’t factored in during the planning process, it limited participation in both the sessions and the surveys they administered.
While it made sense to reach the PWDs through their associations, it also meant that non-members missed out on the intervention. Hence, it’s important for government at the sub-national level, in particular, to work with grassroot organisations to capture the data of all PWDs to ensure that they are not left behind. In the United States for example, US CDC provides funding for two National Centers on Disability that focus on improving the quality of life of people living with disabilities. Akhabue said she is looking forward to a time when policymakers will join group therapy sessions to experience first-hand, the mental health issues PWDs deal with.
The mental health project for youths with disabilities and their family members/caregivers was implemented in January 2022 and ended in December 2022. For the JDI team however, it is not over as they are leveraging the stories of consenting participants to continue pushing for more inclusive mental health services. In addition, the findings from their surveys released publicly will continue to serve as a useful resource and inform learning and research for inclusive mental health services across Nigeria.