Partnering with families to mobilize a holistic family-centred approach to childhood disability: A multi-faceted integrated knowledge translation project

Abstract

Background: This thesis aimed to develop, implement, and evaluate a multi-faceted integrated knowledge translation (iKT) intervention to disseminate and support adoption of the ‘F-words in Childhood Disability’. Grounded in the WHO’s ICF framework, the ‘F-words’ (Function, Family, Fitness, Fun, Friends, and Future) offer a holistic family-centred approach to childhood disability. Methods: This thesis was guided by the action cycle of Graham et al.’s (2006) knowledge-to-action (KTA) framework. Chapter 2 reports a knowledge translation (KT) initiative (i.e., an online video) to disseminate the ‘F-words’ and explore people’s reception of these ideas. Chapter 3’s scoping review identifies and assesses KT strategies that directly target families raising children and youth with special health care needs. Chapter 4 describes a pilot study to evaluate the usability and utility of an online ‘F-words’ KT resource. Chapter 5 reports a case study of our longitudinal KT research program, and uses Diffusion of Innovation (DOI) theory to understand the factors that contributed to the adoption of the ‘F-words’. Results: Multi-faceted KT strategies, co-developed with stakeholders, were essential to moving the ‘F-words’ into practice. The video (Chapter 2) reached >700 views in two months and 98% of 137 survey respondents indicated they ‘extremely liked’/‘liked’ the ideas. The scoping review (Chapter 3) identified six studies, all of which evaluated educational materials and deemed them to be useful and important to families. The pilot evaluation (Chapter 4) revealed the online resource to have positive usability and utility for families and service providers. The case study (Chapter 5) highlighted that diffusion, dissemination and implementation strategies were all needed and that DOI factors (i.e., the innovation characteristics, communication channels, social networks, and time) contributed to the adoption of the ‘F-words’. Based on a multi-faceted integrated KT research program we now have extensive examples of ‘F-words’ adoption by families, service providers, and health care organizations. Conclusions: This thesis illustrates a step-wise theory-informed approach to the development and evaluation of a multi-faceted iKT intervention. By studying each step of the action cycle, this work contributes new knowledge to both the processes involved in disseminating research evidence, and associated outcomes from a multi-faceted iKT intervention. Findings from this thesis contribute new discoveries to both KT practice and science.