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Eva Mwangome

Affiliate Stigma among Caregivers of Children with Neurodevelopmental Disorders in Kenya: Experiences, Burden, and Interventions




Caregivers of children with neurodevelopmental disorders (NDDs) experience many challenges, including stigma from the public. When caregivers encounter, accept and internalize stigma encountered from the public, they develop affiliate stigma. These experiences significantly impact on both the child and caregiver’s mental health and wellbeing, which can lead to harmful coping strategies and poorer mental health outcomes if not addressed. With a shift towards family-based interventions (FBIs) to address the needs of these children and their families, little is known about FBI effectiveness in addressing affiliate stigma among caregivers. Epidemiological studies on affiliate stigma among caregivers of children with NDDs are few in sub-Saharan Africa and in Kenya, and no measure has been validated among this population in Kenya.

 

The proposed study aims to provide empirical evidence on affiliate stigma among caregivers of children aged 2-9 years with NDDs and how this can be addressed through FBIs in both rural and informal urban settlements in Kenya. This will involve:

  1. Summarizing empirical evidence on FBIs addressing affiliate stigma among caregivers of children with NDDs in LMICs

  2. Exploring lived experiences of caregiver affiliate stigma

  3. Validating an affiliate stigma measure

  4. Providing preliminary evidence on the burden, associated factors of, and effectiveness of FBI on affiliate stigma among caregivers.

The proposed study will inform future research, service provision, and policy makers on pathways for identification and addressing affiliate stigma through FBIs for at risk caregivers of children with NDDs in Kenya.

SPARK phase 1 activities involve capacity building, awareness creation, identification and referral of children with developmental disorders, while the SPARK phase 2, the clinical trial, will evaluate the effectiveness of a family-based intervention (the CST). Eva's study will be nested in both phases of SPARK and will involve similar participants in both cases.


 

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