Stigma experienced by families with members with intellectual disabilities in Kinshasa, Democratic Republic of the Congo

Introduction: This article outlines the results of a participatory action research project to (a) understand stigma experienced by family members of people with intellectual disabilities (IDs) in Kinshasa, Democratic Republic of the Congo and (b) identify strategies used by these family members to mitigate or cope with stigma.

Methods: We conducted 20 semi-structured interviews with family members of people with ID.

Results: All participants in this study discussed experiencing stigma. This stigma was most commonly felt when people directed negative looks, used negative language and names, or refused to touch their family member with ID. Stigma was also directed at the family members as being the ’cause’ of the ID. Family members noted engaging a range of coping mechanisms or strategies to minimise the stigma.

Conclusion: Insight from this study could be used to develop interventions benefiting families affected by ID. A sample of suggested interventions include creating opportunities for targeted, local contact with stigmatised persons; reducing or eliminating use of negative and stigmatising names (e.g. kizengi) for people with ID; and promoting self-help and self-advocacy groups for people with ID and their families

KEY IMPLICATIONS FOR PRACTICE

• Families of people with intellectual disabilities in Kinshasa, Democratic Republic of the Congo experience personal and family-level stigma
• Family members use a range of coping strategies, such as referencing religion; educating others; and participating in self-help associations
• Future interventions might create opportunities for targeted, local contact with stigmatized persons; reduce or eliminate negative and stigmatizing names for people with ID; and promote self-help for people with ID and their families.