‘I bring her up with love:’ Perspectives of caregivers of children with neurodevelopmental delays in western Kenya

Abstract

Objective This study aims to understand the challenges and perspectives of caregivers with neurodevelopmental delays (NDD) in rural Kenya. Methods Semi‐structured interviews and the Affiliate Stigma Scale were administered to the primary caregivers of children with NDDs recruited from the communities near Eldoret, Kenya. Constant comparison and triangulation methods were used to inductively develop relevant themes and concepts. Results Sixteen caregivers participated. Challenges, which included hardships related to safety and supervision, challenging emotions and financial difficulties, were compounded by a lack of social support and community stigma towards these children. However, caregivers still felt deep love for their children, desired acceptance from the community and found sources of strength from faith and religious institutions. Conclusion The study uncovered crucial insights into the perspectives of caregivers within this population and revealed a paucity of disability awareness and understanding within the community, possibly informing future programmes and intervention policies.

Pepea Pamoja:† Applying the Ecological Validity Framework to co‐develop a wellbeing and behavioural training program for caregivers of young children with autism in low‐resource settings of Kenya and the United States

“…The concepts domain refers to the need for an intervention to be conceptually consistent with the culture for which it is developed and implemented. Understanding that stigma, personal and community beliefs, cultural perspectives, and awareness about disability in African countries (Adugna et al, 2020; Heng et al, 2023) would impact appropriateness of the program, we built exploration of these perspectives and barriers into the curriculum. During training, the facilitators were taught basic concepts of motivational interviewing (Rollnick & Miller, 1995) to both acknowledge longstanding African perspectives on disability aetiology and management (Abubakar et al, 2016; Adugna et al, 2020; Heng et al, 2023) and to support caregivers in expanding or modifying these beliefs to take action in supporting their autistic child's communication and behavioural development.…”

“…Understanding that stigma, personal and community beliefs, cultural perspectives, and awareness about disability in African countries (Adugna et al, 2020; Heng et al, 2023) would impact appropriateness of the program, we built exploration of these perspectives and barriers into the curriculum. During training, the facilitators were taught basic concepts of motivational interviewing (Rollnick & Miller, 1995) to both acknowledge longstanding African perspectives on disability aetiology and management (Abubakar et al, 2016; Adugna et al, 2020; Heng et al, 2023) and to support caregivers in expanding or modifying these beliefs to take action in supporting their autistic child's communication and behavioural development. Specifically, facilitators provided evidence‐based information on aetiology of autism, benefit of educational and behavioural interventions, and strategies for communicating with family and community members about autism and disability.…”

“…Active partnership and equitable involvement between the United States and Kenya team in all aspects of the program development was a cornerstone of this work. Leveraging the academic infrastructure of AMPATH Kenya (Einterz et al, 2007) and previous community engagement efforts and disability research (McHenry et al, n.d.; Heng et al, 2023) provided the study team with foundational insights into both the strengths and challenges of designing a training program for Kenyan caregivers of young children with autism. Further, we used a multi‐method (i.e., meetings, workshops, site visits), longitudinal, and iterative process to undertake co‐development of Pepea to inform adaptation suited to the Kenyan culture.…”

“…Given that access to evidence-based autism interventions is a challenge in both rural and under-resourced regions of the United States (HIC) and western Kenya (LMIC) (Heng et al, 2023), there is a rich opportunity for innovation that can address health inequities across these settings . Reciprocal innovation, the bidirectional and iterative exchange between two different settings to address a common health challenge and provide mutual benefit to both sides, may be a key methodology to designing and implementing sustainable and (2) identification of shared health challenges occurs through a bi-directional and co-constituted approach; and (3) high-quality innovations from global health partnerships are identified for demonstration, replication, and dissemination across diverse settings .…”

“…Many of these barriers are particularly challenging in regions of Africa where poverty and limited resources, negative attitudes and supernatural beliefs regarding the aetiology of disability, and inadequate implementation of healthcare and disability policy further compound the challenges of building autism service capacity (Adugna et al, 2020). Poor access to care results in hardships related to child safety and supervision, financial difficulties due to lost work, family social isolation, and lack of community support (Gona et al, 2016; Heng et al, 2023). Combined, these factors place children with autism at elevated risk for maltreatment and premature death (Bayat, 2015; Olusanya & Nair, 2019).…”