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

Abstract

BackgroundUnderstanding 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.MethodsParticipants 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.ResultsMost 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.ConclusionsThis 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1383-9) contains supplementary material, which is available to authorized users.

Caregivers’ characteristics and family constellation variables as predictors of affiliate stigma in caregivers of children with ASD

“…Findings are commensurate with other recent studies, in which caregivers' characteristics and other family factors accounted for a significant portion of the variation in affiliate stigma (Kolshorke et al, 2014(Kolshorke et al, , 2017Singh et al, 2016;Thara et al, 2000). Previous research however highlighted caregivers' age, gender, ethnicity, and earning potential, as predictors of affiliate stigma (Singh et al, 2016;Tilahun et al, 2016). This was not the case in the current study.…”

“…Caregivers who prescribed to a supernatural explanation for their child's condition were also more likely to report affiliate stigma (Tilahun et al, 2016). More recently, in a group of ASD caregivers from China, self-esteem negatively, and feelings of shame positively, predicted reports of affiliate stigma (Zhou et al, 2018).…”

Nigerian Teachers’ Understanding of Autism Spectrum Disorder: A Comparative Study of Teachers from Urban and Rural areas of Lagos State

“…Research across a range of disciplines including health (Heidgerken et al, 2005), social work (Preece and Jordan, 2007) and education (Jones et al, 2008) has identified the importance of professionals having a sound understanding of ASD, and the positive impact this can have on the lives of children with ASD and their families (Tilahun et al, 2016). Moreover, accurate knowledge about ASD and the use of ASD-appropriate strategies have been shown to improve teacher selfefficacy and confidence and to reduce likelihood of stress and burnout (Jennett et al, 2003;Ruble et al, 2011).…”

Ghanaian traditional and faith healers' explanatory models of intellectual disability

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