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Family and community support is vital to offset the damaging effects of stigma associated with autism, intellectual disability and other developmental disorders, a study in Ethiopia shows. Without such help, children with these disorders and their families are more likely to struggle, and to isolate themselves from society.
Negative reactions to children with developmental disorders have been reported in Asia, the Middle East and in the West. In sub-Saharan Africa, on top of stigma, many parents face lack of health and educational services, poverty and widespread lack of awareness.
This research found that many parents experienced a wide range of stigma when out with their children, from staring and pity to criticism. Others felt that friends and family understood and supported them, and they tended to cope better.
This research, conducted alongside Ethiopian researchers, communities and families, should help ensure that programmes offering help and support are relevant to the specific context in Ethiopia.
What’s the issue?
Stigma and parental blame can mean that children with developmental disorders often remain isolated at home. In sub-Saharan Africa, most do not attend school and they receive no formal support. Their families often live in poverty, as caring responsibilities mean caregivers are unable to work. Caregivers report severe stress and social isolation; many caregivers report mental health problems.
Projects are underway to help these families. The World Health Organization (WHO), for example, has set up a global caregiver skills training programme, which is being tested in high-, low- and middle-income countries. The programme aims to address communication, engagement, daily living skills, challenging behaviour and caregiver coping strategies. But to be effective in settings like Ethiopia, such programmes need to account for the social, economic and cultural context.
Surveys in Ethiopia have indicated that many parents encounter stigma, but there is little information about what form it takes and what the effects are.
The study interviewed 18 parents (14 mothers and four fathers) of children with developmental disorders, including autism and intellectual disability. Half the parents lived in the capital city Addis Ababa and the others lived in the rural town Butajira. The interviews were conducted in the local language, Amharic, and translated into English.
The study identified a variety of experiences of stigma, and the factors that helped some parents cope with it well. The researchers suggest their findings could be used to tailor the help offered to families.
Four themes emerged from the interviews:
1. Parents’ negative experiences of stigma
One parent explained how people wrongly saw her daughter as a threat to their own child’s safety: “My daughter fears fight, she is calm and doesn’t touch anyone... but the community …think she will hit and push their children.”
Parents could become socially excluded, for example, because of the wider family’s embarrassment: “They told me not to bring my child to their house during daytime and they told me to bring her to their house during the night-time [so that nobody can see her].”
Some parents said their family and the public saw their child’s disorder as a curse or a punishment. One said: “They were saying I must have done something [to cause the child's condition].”
2. The consequences of stigma
Stigma had negative impacts on siblings. “The older one gets uncomfortable because they stare at his youngest brother,” one parent said. “He asks me why they stare and he gets upset.”
Parents said that stigma forced them to isolate themselves: “... truly people are killing what is left of my energy. They are just making me be ashamed when I decide to take him [my child] out.” One mother described how she was affected: “I cried until I couldn’t talk.”
3. Positive social experiences
Many parents said they were supported by their own family, neighbours, schoolteachers and the general public. People with better awareness of developmental disorders behaved more positively towards parents and their children. One mother reflected: “People who have awareness understand when he [her son] exhibits difficult behaviour on the street.” Another said: “People let me get into the taxi without queuing when they see my child biting me.”
4. Factors that helped parents
Parents who felt supported and accepted by their family did not feel embarrassed or ashamed and did not stop going out: “I take him everywhere I want. People can say different things, but I don’t give much attention to that.”
Parents’ own increased awareness about developmental disorders changed their reaction to others’ negative attitudes. One mother said: “I used to say she has a heart problem and did not say she has a developmental problem... I did not talk about it… [but] after I became aware, I started to talk with confidence.”
Why is this important?
This finding can help tailor general programmes intended to help parents, such as the WHO caregiver skills training (CST) programme.
The study showed the importance of awareness-raising. Lack of knowledge and understanding contributed to people’s negative attitudes and often provoked stigmatising behaviour. The findings showed that increased awareness among parents protected them from internalising the effects of stigma, which often resulted in negative behaviours such as social isolation.
These and other insights from the study can now be used to better plan and design projects that aim to intervene and help reduce the impact of stigma, including on the wider family.
Along with Kenyan colleagues, the researchers are using the results of this study to design a broader follow-up project. Called SPARK (SuPporting African communities to increase the Resilience and mental health of Kids with developmental disorders and their caregivers), the project has received funding for four years from the NIHR Research and Innovation for Global Health Transformation scheme.
The SPARK project aims to involve local leaders, teachers, health workers and parents of children with developmental disorders in developing interventions. To help with this, the researchers now want to gather information from the extended family of affected children, including grandparents who typically play a major role in raising children.
The SPARK project seeks to raise community awareness and will train health workers and teachers to identify children with developmental disorders, so they and their families can be included in the WHO CST programme. Researchers will test how well the CST works and whether it is cost-effective.
You may be interested to read
The full study: Tekola B, and others. Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study. Social Science and Medicine. 2020;256:113034
Research from the same group on stigma in African countries: Tilahun D, and others. Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey. BMC Health Services Research. 2016;16:152
Review following work on autism services in Ethiopia: Tekola B, and others. Challenges and opportunities to improve autism services in low-income countries: lessons from a situational analysis in Ethiopia. Global Mental Health. 2016;3:e21
Research on the impact of training about developmental disorders on community health workers in Ethiopia: Tilahun D, and others. Ethiopian community health workers’ beliefs and attitudes towards children with autism: Impact of a brief training intervention. Autism. 2019;23:39-49
Funding: The study was funded by Autism Speaks and supported by the UK Medical Research Council, Department for International Development (DFID), Wellcome Trust and the NIHR.
Conflicts of Interest: The study authors declare no conflicts of interest.
Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.