Parenting is inherently stressful at times and several studies have shown that being a caregiver of a child who is disabled is even more stressful. A number of studies have tried to identify demographic and psychosocial variables which are predictive of parenting stress levels. It is obvious from these studies that parenting stress is complex as there is no general consensus as to what the factors are which exacerbate or mediate parenting stress in caregivers of children who are disabled. The aim of this study was therefore to assess the parenting stress levels of caregivers of children who are disabled and to try to establish whether the level of the child’s disability influenced parenting stress levels. Further objectives were to ascertain whether various psychosocial and demographic variables were predictive of parenting stress levels. In order to meet these objectives the Parenting Stress Index/Short Form was sent to caregivers of children with cerebral palsy who were attending Frances Voorweg School in Johannesburg. Caregivers also completed a demographic questionnaire. The severity of disability of the children was classified using the Gross Motor Function Classification System. Thirty-five parenting stress questionnaires were returned to the researcher. Means and frequencies were used to summarise the demographic data. T-tests were performed to establish whether there was any significant difference between the parenting stress levels of caregivers of children who were more functionally disabled and those whose children were less disabled. Pearson’s correlations were used to determine whether there was any correlation between demographic variables and parenting stress levels. The parents of the children in the sample showed clinically significant, and in many cases, pathological levels of parenting stress. This stress was however, not in anyway influenced by the severity of their children’s disabilities. The only variable that correlated strongly to the level of parenting stress was found to be the income level of the family (r=0.8). The results of this study confirm that parenting stress is complex and that it is not a simple matter to predict the parenting stress levels of caregivers of disabled children. Therapists should evaluate the needs of each family individually and follow a family centred approach when managing children with cerebral palsy.

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.

Introduction: For children born with physical disabilities, the perspectives and actions of their parents prove significant to their childhood developmental outcomes clinically, educationally, socially, and with regard to community participation. The lived world and perceptions of parents who have children with disabilities however is not well investigated. This study sought to understand parents’ framing of theirs and their children’s disability experiences. Family systems together with family systems intervention models, and disability theory were used to provide structure to interview instrumentation and subsequent analysis. Child-centered and ecologic influences were also used to track the transformative processes over time that infuses parental themes. Methods: Methods for this study followed traditions of heuristic phenomenology. Open-ended parental interviews, written and spoken, together with field notes were used to explore the meanings given to disability. Analysis focused on collective descriptions and critical themes. Results: The nine parents in this study revealed four dominant themes around which their children’s lived lives were both understood and framed. Navigating normal for us; Our pride and joy; Anything but disability; Lived lives, looking back. Each is expressed in the words of parents who reared a child with disabilities into adulthood. Discussion and Recommendations: Parental disability frameworks differ from medical model frameworks and those of disability studies but share similarities with each. The parent themes provided holistic views of what these families have lived and learned. Their perspectives provide potentially vital markers and points of inquiry for interventionists and team members who work with children and families. Themes may also offer categorical means to explore well-being and child outcomes. Additionally, the themes were transformative and empowering for parents, both in the discussion of individual matters and in their narratives. All participants iterated that they welcomed having their voices invited and heard.

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