Exploring caregiver experiences of stigma in Ghana: They insult me because of my child

Abstract

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 interest

• Stigma 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.

Keywords:

• Disability
• child
• caregiver
• stigma
• Ghana

Acknowledgements

We would like to thank members of our Ghana team and advisory board members including Dr Norgrove Penny, Dr Eben Badoe, Dr Mel Adams, Maxwell Akandem, Dr Cally J. Tann, Sandra Carsamer, and Hannah Awadzi. Most importantly, we would like to thank all the participating families, especially the caregivers and children who participated in the programme.

Disclosure statement

There is no financial benefit or conflict of interest arising from this research.

Data availability statement

At the time of conducting this research, the ethics permission allowed for the data to be shared within the research team only.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This work was supported by the CBM International.