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Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and family partners and report how existing resources can be leveraged to compensate patient and family partners fairly and appropriately. We also present some of our first-hand experiences with patient and family compensation and offer suggestions for research leaders, agencies, and organizations so that the health care stakeholders can collectively move toward more equitable recognition of patient and family partners in research.

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Hemiplegic cerebral palsy (CP), the most common subtype, is characterized by high levels of mobility. Despite this, children with hemiplegic CP can face challenges functioning in and adapting to situations of everyday life. The purpose of this cross-sectional study (Hemi-NET database) was to identify factors associated with adaptive behaviour in 59 children with hemiplegic CP (ages 4-18; GMFCS I-IV). Using multivariate regression analyses, the relationship between demographic, medical, and developmental factors and adaptive behaviour (measured by the Adaptive Skills Composite score of the BASC-2) was explored. Results indicate that 34% of children had impaired adaptive skills. An autism diagnosis and lower communication functioning were significantly associated with poorer adaptive skills (R2 = 0.42, F(4, 43) = 7.87, p < 0.001), while factors such as IQ scores and GMFCS level were not. The results contribute to the growing literature that suggests that clinicians and researchers need to look beyond motor functioning when working with individuals with CP.

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PURPOSE: The objectives of this review were to: (a) explore the extent and nature of available research on non-custodial grandparents of children with physical, intellectual, or neurodevelopmental disabilities and (b) descriptively summarize the research findings from those studies. METHODS: We followed the five-stage scoping review methodology to identify relevant studies from four databases: Medline, CINAHL, Embase, and PsycINFO. Primary, peer-reviewed studies that explored grandparent-related topics in the context of childhood disability were included. RESULTS: Thirty-one studies were identified and analyzed. All of the studies followed non-experimental and qualitative study designs. In the last decade, there has been a growing interest in research on this population (n = 15). Grandparents varied considerably in age, education, employment status, and living arrangements (n = 4680). Grandmothers represented the vast majority of the population (82%). We grouped the grandparent-related findings from the individual reports into four categories: 1. Adjustment to grandchild's disability, 2. Roles, 3. Perceptions, and 4. Experiences. CONCLUSION: Grandparents of children with disabilities are a heterogeneous population that experiences unique challenges in their grandparenting role. Future studies on this topic should be oriented toward high-quality, experimental study designs that take into consideration cultural, religious and demographic factors. Grandparents' involvement in healthcare should be encouraged.IMPLICATIONS FOR REHABILITATIONGrandparents of children with developmental disabilities who are not primary caregivers to their grandchild(ren) are significant family members in many families.They face unique challenges in adapting to their grandchild's disability and interacting with professionals regarding their grandchild's disability and functioning.Although there is considerable heterogeneity within this population, most grandparents share the experiences of gradual emotional adjustment to their grandchild's disability, active family involvement, positive perceptions of their family and grandchild's disability and lack of services for them.There are no identified interventions in the research literature that aimed to support grandparents of children with disabilities.

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BACKGROUND: The prevalence of cerebral palsy (CP) in countries in Africa is suggested to be higher than in Western countries. Research in Western resource-rich contexts has demonstrated the importance of environmental factors in the activities and participation of individuals with CP, as illustrated by the International Classification of Functioning, Disability and Health (ICF). Although the domains of the ICF are often acknowledged in research on CP in western contexts, the extent to which these domains have been explored in resource-limited areas is unknown. The current review aims to describe the nature of the current published literature on CP in African countries and how it aligns with the domains of the ICF. METHODS: Key informants familiar with the literature on CP in Africa were consulted, and a literature search was conducted to identify articles on CP originating from countries in Africa. Identified articles were assessed to determine the ICF domains that align with the studies. Themes relating to each domain were identified. RESULTS: Twenty-seven studies were included. The majority of studies were quantitative (70.3%) and focused on children or caregivers. Most studies included a body functions and structures component (70.4%), focusing on impairment rather than functioning. Activities and participation domains were addressed, but often focused solely on mobility. Environmental factors typically related to resources and policies and personal factors were often unexplored. CONCLUSIONS: Research on CP in Africa tends to be grounded in a biomedical approach to disability and does not explicitly use the ICF as a guiding framework. Studies exploring body function and structures tend to be descriptive in nature, whereas activities and participation, and environmental and personal factors, represent modifiable factors that may be addressed with interventions. Knowledge translation activities that promote the ideas of the ICF in an African context should therefore be considered.

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