Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana

Abstract

Background Empowerment is an increasingly popular goal, considered core to a transformative agenda for children with disabilities and their families. However, it can still be a poorly understood concept in practice. Objective This article is an empirical analysis of the ‘empowerment journeys’ of caregivers participating in a community-based training programme in Ghana. Method In-depth interviews were conducted with 18 caregivers at three time points over 14 months. Thematic analysis was conducted on the full data set, with three representative case studies selected for more detailed analysis to illustrate the dynamism of time and context in shaping the empowerment journey. Results Our findings illuminate the complexity and non-linearity of the caregiver empowerment journey. There were important gains in individual dimensions of power and the nascent emergence of collective power, through improved knowledge and valuable peer support from group membership. However, further gains were impeded by their limited influence over wider economic and sociopolitical structural issues that perpetuated their experiences of poverty, stigma and the gendered nature of caregiving. The support group facilitator often played a valuable brokering role to help traverse individual agency and structural issues. Conclusion A richer and more nuanced understanding of caregiver empowerment in the community and family context can inform the wider discourse on disability. Guidelines on working with people with disabilities, and the role of empowerment, should not neglect the pivotal role of caregivers. There are important lessons to be learnt if we want to improve family-centred interventions and transform the lives of children with disabilities.

Experiences, Motivations, and Perceived Impact of Participation in a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study

“…This lack of control was described as a particularly important motivation for seeking Facebook-based P2P support. These findings support previous investigations suggesting an association between participation in P2P support groups and knowledge of health-related resources among caregivers of children with disabilities [ 54 ]. The availability and accessibility of the Facebook group was also identified as a reason why participants used the group; many participants described feeling overwhelmed in their role as a caregiver, with very less time.…”

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

“…The ability of caregivers to challenge stigmatising attitudes within the family, as a result of training received, was less evident within our study. This highlights the potential limitations of an individual caregiver agency to influence the power dynamics of the household, and is explored in more detail in a separate publication on caregiver empowerment (Zuurmond et al 2020). It also emphasises the need for a multi-faceted approach to stigma mitigation which engages with different levels and gatekeepers, as focusing on the individual caregiver alone will likely be inadequate.…”

Group-based caregiver support interventions for children living with disabilities in low-and-middle-income countries: Narrative review and analysis of content, outcomes, and implementation factors

“…While age was not always specified (n = 8, 26%), five studies (16%) focussed exclusively on the early childhood period (aged under five years) while the remainder included older children and some included adolescents (Table 2, Figure S1 in the Online Supplementary Document). Most studies were conducted in UMICs (n = 12, 38.7%) [18][19][20][21][22][23][24][25][26][27][28][29] and LMICs (n = 14, 45.2%) [8,14,[30][31][32][33][34][35][36][37][38][39][40][41]. Four studies (12.9%) [42][43][44][45] were conducted in LICs, and one study was conducted across multiple regions (Figure 2).…”

“…Detailed descriptions of intervention content and materials were included in 20 studies (64.5%) [8, [18][19][20][21][22][23][25][26][27][28][29]31,33,38,40,41,44,46,47]. Detailed intervention descriptions were linked in the supplemental material of five studies (16.1%) [30,32,35,36,43] and six studies (19.4%) [24,34,37,39,42,45] 3).…”

“…The median length of support group interventions was 10.5 weeks. Two support groups convened five days a week [18,36], 16 support groups convened weekly [14,[19][20][21][22][23][25][26][27][28][29][30][31]40,43,45] and four support groups convened monthly [8, 33,34,41]. The frequency of support groups was unspecified or not applicable (i.e.…”