Exploring caregiver experiences of stigma in Ghana

They insult me because of my child

Bibliographic Data

ID12312608
AuthorsMaria Zuurmond (0000-0002-0347-0126, London School of Hygiene and Tropical Medicine, Faculty of Infectious and Tropical Diseases, International Centre for Evidence in Disability, London, UK, corresponding author), Janet Seeley (0000-0002-0583-5272, London School of Hygiene and Tropical Medicine, Faculty of Public Health and Policy, London, UK), Gifty Gyamah Nyant (University of Ghana, Legon, Ghana), Marjolein Baltussen (CBM International, Bensheim, Germany), Jedidia Abanga (Presbyterian Church of Ghana, Accra, Ghana), Sarah Polack (0000-0002-7524-7396, London School of Hygiene and Tropical Medicine, Faculty of Infectious and Tropical Diseases, International Centre for Evidence in Disability, London, UK), Bernay (0000-0001-7628-8408, London School of Hygiene and Tropical Medicine, Faculty of Public Health and Policy, London, UK), Tom Shakespeare (0000-0003-2571-2787, Twitter (United States))
Year2020
Volume37
Issue5
Pages827-848
Publication date2020-12-01
Peer ReviewedYes
Open AccessNo
TypeARTICLE
VenueDisability & Society (JOURNAL)
Journal identifiersISSN: 0968-7599 • E-ISSN: 1360-0508
PublisherTaylor & Francis (PUBLISHER • GB)
DOI10.1080/09687599.2020.1851172
OpenAlexW3110388158
LanguageEN
Citations received7
References cited63

Families of children with disabilities experience stigma by association with their child. This article examines social and internalised stigma experienced in the family by caregivers who participated in a caregiver programme in Ghana. Stigma is pervasive, and gendered, with most mothers blamed for bringing disability into the home. Emotional distress, isolation and lack of support are common experiences. We argue that the mothers can experience forms of disablism. Stigma is multi-layered, and a range of factors intersect with disability-related stigma, including poverty. A support group model can have a positive impact on caregiver internalised stigma and begin to address isolation. This should be part of a wider package of support to address wider structural issues. Families can play an important role in mediating change, but first we need to better understand the social disruption caused by disability-related stigma at the familial level. Points of interestStigma amongst family members with a child with cerebral palsy, is very common in the Ghana context, and fuelled by traditional beliefs.Caregiving and disability-related stigma is gendered. The stigma of childhood disability is often associated with women's role in child bearing and rearing.Better engagement with fathers, and other key members of the family, is needed.Emotional distress, isolation and lack of support are common caregiver experiences in Ghana.A support group model for caregivers has an impact on how they feel about themselves, reducing levels of self-blame and feelings of isolation.We know that the quality of caregiving is really important in the early years of a child's development, so it is important to address any stigma.Factors, such as poverty, play a role in fuelling stigma. These other factors also need to be addressed if we want to reduce levels of stigma experienced by families

Blame · Developmental psychology · Distress · Feeling · Isolation (microbiology · Poverty · Psychiatry · Social isolation · Social support · Stigma (botany · Clinical Psychology · Family and Disability Support Research · Family Caregiving in Mental Illness · Global Maternal and Child Health · Psychology · Social Psychology