Empowerment of families raising a child with a developmental disability:
: a multi-case study approach

Student thesis: Doctoral ThesisDoctor of Philosophy

Abstract

Developmental disabilities (DDs) are lifelong conditions involving difficulties in the acquisition and execution of intellectual or social functions. Individuals with DDs can face a range of health and social adversities. Their wellbeing and meeting their basic needs often rely on their family members and other caregivers, who provide an environment where they are supported and protected. Raising a child with a DD impacts the quality of life and socioeconomic stability of families. The global burden of DDs affects low- and middle-income countries disproportionately. Many families are bound by poverty when setting priorities for their child with a DD. Furthermore, structural inequalities impact their access to services. Caregivers of children with DDs often experience difficulties with claiming the rights of their family and exercising agency to support their children according to their needs. Therefore, empowerment of families and development of accessible support services is an important policy imperative and focus in global health research. The overall aim of this PhD project is to contribute to our understanding of empowerment of caregivers raising a child with a DD. I explored how social, economic, and cultural factors impact caregiver empowerment in different contexts. Specifically, I investigated 1) the extent to which caregiver-mediated interventions can empower families and their communities; 2) perceptions of stakeholder groups involved in supporting families with children with a DD on empowerment and service development and 3) how social determinants impact accessing information and support services in different income settings. The project consists of three phenomenological, qualitative studies. First, I conducted an international study including data from focus group discussions with 15 respondents, and individual interviews with 25 participants from five continents. In this study I investigated perceptions of the role that context plays in the adaptation and implementation of caregiver-mediated interventions globally. I ran two analyses of this study, allowing for the exploration of key directions regarding service development and caregiver empowerment cross-culturally. I went on to use a multiple case study design to investigate caregiver empowerment in two specific contexts: Ethiopia (including data from 63 respondents) and Argentina (including data from 32 respondents). The methods of the two case studies were kept as similar as possible and comprised of perspectives from multiple stakeholders. Lastly, I conducted a comparative analysis of thetwo case studies to identify key similarities and differences in caregiver empowerment across the two settings. Participants in all studies included stakeholders supporting children with DDs: health and education professionals, researchers, professionals in policymaking, and caregivers of children with DDs. I analysed data thematically.

A key finding of this thesis was the need to position caregiver empowerment as a two-way process in which decision-making power is transferred among stakeholders. The goal of caregiver empowerment was conceptualised as removing barriers that would hinder caregivers from doing what they think is best for their child and family, on their own terms. To achieve this structural change, respondents emphasised the need to overcome social exclusion. The implication was that those in positions of power should provide access to resources, often through intervention, to facilitate decision-making opportunities for caregivers. Empowerment was articulated to exist in the individual, community, and organisational domain, while being shaped by macro, meso, and micro level contextual elements. Most importantly, poverty and socio-economic inequalities posed important barriers to caregivers in exercising their agency and supporting their children in the ways they wished to. Caregiver participants across studies highlighted that while they wished to be the key agents in their child’s support, they were also looking for help and resources from the health, education, and social care sectors. This indicated that an empowering approach in interventions should not only aim to help caregivers become self-reliant. Instead, they should offer support to caregivers according to their needs. As a second component of empowerment, caregivers shared the expertise they gained through the experience of raising a child with a DD. While formal interventions may have failed to acknowledge or draw upon this expertise by experience, this expertise was channelled to advocate for improved support and services for their children. While being in an unequal position, through solidarity and the recognition of one another's unique expertise, caregivers were seeking to shift power dynamics.
Date of Award2023
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorRosa Hoekstra (Supervisor) & Charlotte Hanlon (Supervisor)

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