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.
BACKGROUND
Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia.


METHODS
Participants comprised caregivers (n = 102) of children with developmental disorders attending two child mental health clinics in Addis Ababa. The majority (66.7%; n = 68) had a diagnosis of intellectual disability (ID); 34 children (33.3%) had autism spectrum disorder (ASD) as their primary diagnosis. All caregivers were administered a structured questionnaire via a face-to-face interview, which included an adaptation of the Family Interview Schedule, closed questions about socio-demographic characteristics, explanatory models of illness, type of interventions used or desired and coping strategies, and an open ended question regarding the family's unmet needs.


RESULTS
Most caregivers reported experience of stigma: 43.1% worried about being treated differently, 45.1% felt ashamed about their child's condition and 26.7% made an effort to keep their child's condition secret. Stigma did not depend on the type of developmental disorder, the child's age or gender, or on the age or level of education of the caregiver (all p > 0.05). Reported stigma was significantly higher in caregivers who had sought traditional help (p < 0.01), provided supernatural explanations for their child's condition (p = .02) and in caregivers of Orthodox Christian faith (p = .03). Caregivers gave a mixture of biomedical explanations (e.g. head injury (30.4%) or birth complications (25.5%)) and supernatural explanations (e.g. spirit possession (40.2%) or sinful act (27.5%)) for their child's condition. The biggest reported unmet need was educational provision for their child (74.5%), followed by treatment by a health professional (47.1%), financial support (30.4%) and expert help to support their child's development (27.5%). Most caregivers reported that talking to health professionals (86.3%) and family (85.3%) helped them to cope. Many caregivers also used support from friends (76.5%) and prayer (57.8%) as coping mechanisms.


CONCLUSIONS
This study highlights the stigma experienced by families caring for a child with a developmental disorder. Designing interventions appropriate for low-income settings that improve awareness about developmental disorders, decrease stigma, improve access to appropriate education and strengthen caregivers' support are needed.
Addis Ababa University, College of Health Sciences, School of Medicine, Department of Psychiatry, Addis Ababa, Ethiopia.|Jimma University, College of Public Health and Medical Science, Department of Health Education and Behavioural Sciences, Jimma, Ethiopia.
Dejene
D
Tilahun
Addis Ababa University, College of Health Sciences, School of Medicine, Department of Psychiatry, Addis Ababa, Ethiopia. charlotte.hanlon@kcl.ac.uk.|King's College London, Institute of Psychiatry, Psychology and Neuroscience, Health Service and Population Research Department, Centre for Global Mental Health, London, UK. charlotte.hanlon@kcl.ac.uk.
Charlotte
C
Hanlon
Addis Ababa University, College of Health Sciences, School of Medicine, Department of Psychiatry, Addis Ababa, Ethiopia.|King's College London, Institute of Psychiatry, Psychology and Neuroscience, Department of Psychological Medicine, Centre for Affective Disorders, London, UK.
Abebaw
A
Fekadu
The Open University, Department of Life, Health and Chemical Sciences, Milton Keynes, UK.
Bethlehem
B
Tekola
Addis Ababa University, College of Health Sciences, School of Medicine, Department of Psychiatry, Addis Ababa, Ethiopia.
Yonas
Y
Baheretibeb
The Open University, Department of Life, Health and Chemical Sciences, Milton Keynes, UK.
Rosa A
RA
Hoekstra
D000223:Adaptation, Psychological; D000328:Adult; D000067877:Autism Spectrum Disorder / Q000523:psychology* / Q000628:therapy; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002662:Child Health Services / Q000706:statistics & numerical data; D003430:Cross-Sectional Studies; D005002:Ethiopia; D005191:Family Characteristics; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology* / Q000628:therapy; D008297:Male; D016488:Medicine, African Traditional / Q000706:statistics & numerical data; D010342:Patient Acceptance of Health Care; D011203:Poverty; D057545:Social Stigma; D011795:Surveys and Questionnaires
Autism Spectrum Disorder; Developing countries, Africa; Developmental disorder; Intellectual disability; Stigma