Program evaluation is becoming increasingly important in pediatric rehabilitation settings that adhere to FCS philosophy. This philosophy recognizes that each family is unique, that parents know their children best, and that optimal child functioning occurs within a family context. However, researchers know little about the specific evaluation activities occurring in these settings or the extent to which evaluators uphold FCS philosophy in their activities. The primary goal of this study is to examine the strengths, limitations, and consequences of current evaluation practice, including its compatibility with FCS philosophy. As a secondary goal, the study aims to understand the promise and prospects of alternative evaluation approaches that, in theory, are compatible with FCS philosophy. To address these goals, this study uses a mixed-methods approach and includes three phases. Phase 1 involves a survey of staff members involved with program evaluation at 15 Canadian pediatric rehabilitation centres. It determines the level of program evaluation occurring in these settings, verifies on the motivation for evaluation, and describes the degree to which evaluation activities are consistent with the FCS philosophy. Phase 2 involves interviews with staff members and explores the values, factors, and conditions that support and inhibit the evaluation of family-centred programs in pediatric rehabilitation settings as well as the benefits and limitations of using mainstream practices for evaluating these programs. Phase 3 then uses focus groups with staff members and interviews with parents to explore how the evaluation of family-centred programs can be improved as well as to identify the compatibility and practicality of using alternative evaluation approaches within these settings. Overall, the findings show that the amount of evaluation activities occurring within these centres is variable; that the majority of individuals working in program evaluation do not have formal training in it; and that the centres have limited resources for evaluation. The findings also demonstrate that participatory evaluation approaches are more compatible with FCS philosophy but that it might be difficult to implement such approaches given the limited resources and diverse characteristics of rehabilitation settings. In light of these circumstances, the study notes ways for improving program evaluation activities.

Program evaluation is becoming increasingly important in pediatric rehabilitation settings that adhere to FCS philosophy. This philosophy recognizes that each family is unique, that parents know their children best, and that optimal child functioning occurs within a family context. However, researchers know little about the specific evaluation activities occurring in these settings or the extent to which evaluators uphold FCS philosophy in their activities. The primary goal of this study is to examine the strengths, limitations, and consequences of current evaluation practice, including its compatibility with FCS philosophy. As a secondary goal, the study aims to understand the promise and prospects of alternative evaluation approaches that, in theory, are compatible with FCS philosophy. To address these goals, this study uses a mixed-methods approach and includes three phases. Phase 1 involves a survey of staff members involved with program evaluation at 15 Canadian pediatric rehabilitation centres. It determines the level of program evaluation occurring in these settings, verifies on the motivation for evaluation, and describes the degree to which evaluation activities are consistent with the FCS philosophy. Phase 2 involves interviews with staff members and explores the values, factors, and conditions that support and inhibit the evaluation of family-centred programs in pediatric rehabilitation settings as well as the benefits and limitations of using mainstream practices for evaluating these programs. Phase 3 then uses focus groups with staff members and interviews with parents to explore how the evaluation of family-centred programs can be improved as well as to identify the compatibility and practicality of using alternative evaluation approaches within these settings. Overall, the findings show that the amount of evaluation activities occurring within these centres is variable; that the majority of individuals working in program evaluation do not have formal training in it; and that the centres have limited resources for evaluation. The findings also demonstrate that participatory evaluation approaches are more compatible with FCS philosophy but that it might be difficult to implement such approaches given the limited resources and diverse characteristics of rehabilitation settings. In light of these circumstances, the study notes ways for improving program evaluation activities.

Program evaluation is becoming increasingly important in pediatric rehabilitation settings that adhere to FCS philosophy. This philosophy recognizes that each family is unique, that parents know their children best, and that optimal child functioning occurs within a family context. However, researchers know little about the specific evaluation activities occurring in these settings or the extent to which evaluators uphold FCS philosophy in their activities. The primary goal of this study is to examine the strengths, limitations, and consequences of current evaluation practice, including its compatibility with FCS philosophy. As a secondary goal, the study aims to understand the promise and prospects of alternative evaluation approaches that, in theory, are compatible with FCS philosophy. To address these goals, this study uses a mixed-methods approach and includes three phases. Phase 1 involves a survey of staff members involved with program evaluation at 15 Canadian pediatric rehabilitation centres. It determines the level of program evaluation occurring in these settings, verifies on the motivation for evaluation, and describes the degree to which evaluation activities are consistent with the FCS philosophy. Phase 2 involves interviews with staff members and explores the values, factors, and conditions that support and inhibit the evaluation of family-centred programs in pediatric rehabilitation settings as well as the benefits and limitations of using mainstream practices for evaluating these programs. Phase 3 then uses focus groups with staff members and interviews with parents to explore how the evaluation of family-centred programs can be improved as well as to identify the compatibility and practicality of using alternative evaluation approaches within these settings. Overall, the findings show that the amount of evaluation activities occurring within these centres is variable; that the majority of individuals working in program evaluation do not have formal training in it; and that the centres have limited resources for evaluation. The findings also demonstrate that participatory evaluation approaches are more compatible with FCS philosophy but that it might be difficult to implement such approaches given the limited resources and diverse characteristics of rehabilitation settings. In light of these circumstances, the study notes ways for improving program evaluation activities.

Neurodevelopmental disorders (NDD) refer to conditions that can be present during a child’s early developmental period, and are typically characterized by challenges in a child’s personal, social, academic, or occupational functioning. Autism spectrum disorder (ASD) is an example of NDD, impacting 1 in 66 children in Canada. While interventions vary across this heterogeneous group of impairments, everyday functioning is an important outcome to families. However, this concept of functioning needs further examination with respect to whether and how it is incorporated within the instruments and concepts used in family-centred services (FCS), and how this is understood by parents. This thesis is composed of two studies: a narrative review identifying function-focused measures published in the literature for children with NDD; and a qualitative study examining how parents of children with ASD perceive their child’s abilities in relation to family-centred services. Fourteen clinical measures were described in the review based on how they utilized the International Classification of Functioning, Disability, and Health (ICF) to describe child functioning. In the qualitative study, five themes (Parenting Approaches, Accepting My Child, Managing Child’s Challenges, Doing the Right Thing for My Child, and “The Disability Tag”) were identified as influential factors that can affect how parents perceive their child’s abilities and functioning. As the cultural shift within interventions for children with NDD continue to move beyond the historically prominent deficit-focused lens, and towards the integration of neurodiverse abilities, this study enables us to understand better how concepts of function-focused care are operationalized in family-centred services and intervention systems. / Thesis / Master of Science Rehabilitation Science (MSc) / To support the shift in health care that focuses on the abilities of children with neurodevelopmental disorders (NDD) rather than their ‘problems’ or ‘deficits,’ we need to further understand how family-centred services (FCS) can better fit this change in thinking. This thesis explores paediatric health care focused on addressing ‘everyday abilities’ for children with NDD in research and clinical practice over two studies. Study #1 reviews some of the current ways that everyday functioning is measured in paediatric health care, examining 14 clinical tools developed for children with NDD. Study #2 reports key patterns that describe the experiences of parents of children with autism, in regards to how they think about their child’s abilities, and the care their child receives. Overall, this thesis studied new ways that we can explore the abilities of children with NDD in FCS, specifically concerning how parents and clinicians describe and measure functioning.

Parent engagement in children’s developmental rehabilitation services is thought to be a fundamental component that is needed for children to reach their potential. This is especially true in the approach known as family-centre services – an approach that positions parents as partners in their child’s services. However, service providers and organizations can have difficulty engaging those parents who often miss their child’s appointments. These families are typically referred to as ‘hard-to-reach’, however this label may ascribe ‘blame’ to parents and lead service providers, researchers and policy makers to overlook the social, organizational, and economic barriers that can limit families’ use of services. Chapters 2-4, explore multiple avenues to contextualize parents’ attendance and engagement in children’s therapy services by applying family centred service tenants, Family Stress Theory, and ethical principles. These chapters lay the foundation for the grounded theory study presented in Chapter 5. This study, conducted with parents of children who use developmental rehabilitation services, describes the conditions that affect parent engagement and presents The Phoenix Theory of Parent Engagement to illustrate how parents attend, participate and engage in their child’s therapy service. These results are presented as a metaphorical journey through children’s developmental rehabilitation services in pursuit of child health and happiness. The implications of this theory are presented as they might be relevant to service providers, organizational leadership, and policy makers. These ideas are offered in an effort to inspire a coordinated effort to improve access and excellence in the provision of developmental rehabilitation services for children and families. / Thesis / Doctor of Philosophy (PhD) / Children’s developmental rehabilitation services are thought to be most effective when parents consistently attend, participate and engage in the service. When families do not consistently attend, participate or engage in services they can be labelled as ‘hard-to- reach’. Little is known about why families are hard-to-reach, if there are organizational barriers to service use, and how to promote engagement. This thesis provides a foundation for understanding parent engagement by exploring the clinical application of family-centred service, Family Stress Theory, and ethical principles. A grounded theory study is presented to contextualize parent engagement and explain how parents engage in their child’s developmental rehabilitation services. Service providers, organizational leadership, and policy makers can apply this theory to promote access and engagement in children’s developmental rehabilitation services.

Family-centred service (FCS), which acknowledges the importance of family engagement in therapeutic processes and focuses on needs of all family members, is increasingly being recognized as an optimal care delivery model for families of children with developmental disabilities. However, services for families are oftentimes ‘child-centric’, wherein family members are seen as partners in therapy or care delivery only, while their own or family needs are not addressed. This arises from the lack of awareness of complex and highly individual family needs by professionals with whom they interact, but also from a significant lack of services oriented toward parent-specific needs in current delivery models. This thesis aims to address this knowledge gap and provides solutions for parental support in the context of pediatric developmental rehabilitation, which might also be applicable to other settings (e.g., community, education). The objectives of this thesis were: (a) to conduct a systematic review synthesizing randomized controlled trials aiming to address parents’ physical, psychological and socioeconomic well-being; (b) to perform cross-cultural and language adaptation and proof-of-concept pilot exploration of an innovative, strengths-based support program ‘ENabling VISions And Growing Expectation’ (ENVISAGE) for parents of children with neurodevelopmental disabilities in Croatia; (c) to refine the Croatian version of the program according to the pilot study results; (d) to run the first set of ENVISAGE workshops and evaluate their impact on Croatian parents’ perception of self, their child with a disability and their family; and (e) to learn about participants’ experience with the program. The findings show that interventions aiming to improve parents’ well-being have limited but promising effectiveness on parents’ health and well-being outcomes. ENVISAGE has proven to be a comprehensive, acceptable, usable, feasible and impactful program for parents of children with developmental disabilities in Croatia. / Dissertation / Doctor of Science (PhD) / Parents raising children with developmental disabilities have unique challenges in their parenting role, which might impact their health and well-being. However, there has been very little focus on parental and family needs in the context of pediatric developmental rehabilitation. Parents are often expected to focus on their child’s issues when their own support needs are usually also significant. This thesis aimed to address this research and practice gap through: a) evaluating best quality evidence on how to support parental well-being; and b) piloting a novel ‘early intervention’ support program for parents of children with disabilities, ‘ENabling VISions And Growing Expectation’ (ENVISAGE), in a new culture and language setting, Croatia. These findings have implications for spreading awareness of innovative programs to improve well-being of parents of children with developmental disabilities in various sectors (e.g., healthcare, community).

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. / Thesis / Doctor of Philosophy (PhD) / In the 21st century, research supports a holistic family-centred approach to childhood disability. Unfortunately, a research to practice gap remains, and the professional-led biomedical approach still informs many practices. In 2012, Rosenbaum and Gorter published “The ‘F-words’ in childhood disability: I swear this is how we should think!” They highlighted the importance of ‘Function, Family, Fitness, Fun, Friends, and Future’, grounded in the World Health Organization’s framework for health. This thesis developed and evaluated a knowledge translation research program to move the ‘F-words’ into practice. Objectives, all achieved, were to: i) apply strategies to spread awareness of the ‘F-words’ and explore people’s reception of these ideas; ii) identify and assess strategies to share research with families; iii) develop and evaluate an online resource to support use of the ‘F-words’; and iv) study the processes involved and factors that contributed to the ‘F-words’ adoption. These findings have implications for both doing and studying knowledge translation.