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.

BACKGROUND: Autism is a complex neurodevelopmental disability with global prevalence of one in 100 individuals. Poor access to interventions in both under-resourced regions of high-income countries and low- and middle-income countries has deleterious effects on the health and wellbeing of individuals with autism and their families. Our objective was to utilize a reciprocal innovation framework and participatory methods to adapt and co-develop a culturally grounded group-based wellbeing and naturalistic developmental behavioural intervention (NDBI) training program for caregivers of young children with autism to be implemented in Kenya and rural Indiana. METHODS: This study was conducted within the Academic Model Providing Access to Healthcare (AMPATH) program. An evidence-informed Naturalistic Developmental Behavioral Intervention (NDBI) previously utilized in Indiana was adapted and iteratively refined using the Ecological Validity Framework (EVF) by a team of US and Kenyan disability experts. Key adaptations to the program were made across the EVF domains of language, persons, metaphors/content, concepts, goals, methods, and context. RESULTS: Substantial cultural adaptations were made to the NDBI following the EVF model, including the addition of traditional Kenyan cultural practices, use of narrative principles, and focus on daily routines over play. Pepea, the adapted program, involves 10 group sessions covering content in basic education on autism, positive caregiver coping strategies, and behavioural skills training to promote child communication and reduce challenging behaviour. Key adaptations for Pepea were integrated back into a US NDBI caregiver training program. CONCLUSIONS: This study fills a critical gap by detailing the adaptation process of a caregiver wellbeing and naturalistic developmental behavioural training program for caregivers of children with autism in low-resource settings. Our next steps are to report on mixed-methods outcomes from pilot implementation. Our long-term goal is to apply these insights to advance sustainable and scalable autism intervention services across the globe.

Clinical Findings and Evaluation of Newborns Who Were Anonymously Surrendered.

This cohort study examines clinical findings, medical treatment, and outcomes for infants in Indiana who were surrendered under Safe Haven laws.

"If it benefits someone, it will be good:" perspectives on research participation from pregnant women living with HIV.

Pregnant women living with HIV (PWLHIV) are becoming increasingly involved in HIV research; however, the ethical concerns regarding their decision-making related to research participation are understudied. This qualitative study aimed to understand the perspectives and lived research experiences of PWLHIV, intending to identify important considerations to inform best practices. This study used semi-structured interviews (SSIs) of PWLHIV who participated in research studies in Eldoret, Kenya. All interviews were audio-recorded, transcribed, and translated. Qualitative analyses were performed, with line-by-line coding, constant comparison, axial coding, and triangulation to identify central concepts. Twelve PWLHIV participated. Overall, participants had positive experiences with HIV research. Most participants had difficulty distinguishing the differences between the research process and enhanced clinical care. They reported a willingness to participate in future HIV research studies and indicated altruism as the primary motivator. Participants identified their preferences and experiences with recruitment, consenting, reimbursement, and enrolment of infants in HIV research. The largest barrier for participating in HIV research was identified as a concern that participation would lead to HIV disclosure. By understanding the lived experiences of PWLHIV who participate in HIV research, future researchers can design studies and consenting processes to optimize ethical research practices.

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

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.

Global Health Partnerships During the COVID-19 Pandemic: Perspectives and Insights from International Partners.

Global health partnerships (GHPs) have encountered many challenges during the coronavirus disease 2019 (COVID-19) pandemic. New perspectives and insights are needed to guide GHPs when navigating current and future collaborations. This study aimed to understand perspectives and insights of international partners regarding how the COVID-19 pandemic impacted their GHPs with institutions in the United States. We performed a cross-sectional qualitative study conducted through virtual semi-structured interviews performed between June 12, 2020 and July 22, 2020. We queried academic institutions based in the United States to refer individuals from their corresponding international GHP organizations. We invited these individuals to participate in virtual interviews that were audio-recorded and transcribed. We analyzed data qualitatively to identify themes. Eighty-four United States partners provided e-mail addresses for international partners. Ten individuals from these GHPs completed the interview. Participants reported overall positive experiences with their United States-based partners during the pandemic. The following themes emerged: imbalanced decision-making; worry about partnership continuity; opportunity to optimize communication within partnerships; interest in incorporating technology to facilitate engagement; and a desire for increased bilateral exchanges. Several challenges appeared to exist before COVID-19 and were highlighted by the pandemic. Most respondents were optimistic regarding the future of their GHPs. However, concerns were expressed regarding the implications of fewer in-person international experiences with United States trainees and the desire for stronger communication. Although our results do not represent the perspectives and insights of all GHPs, they provide considerations for the future. We urge institutions in the United States to re-examine and strive for equitable relationships with their international partners.