The plan of care in occupational therapy for caregivers of children with acquired brain injury (ABI), created through goal setting, is the foundation for providing services in a pediatric neurorehabilitation setting. During the first year after the injury, caregivers often experience gaps in education, feelings of decreased competence, and decreased understanding of the recovery process. These factors can make developing goals a challenge for caregivers and service providers alike. Although a number of goal-setting mechanisms exist, they currently lack options sensitive to this population’s unique needs. This project set out to explore the clinical barriers involved in goal setting in pediatric rehabilitation and to develop a relevant solution that guides the process. The results identified two theoretical models to use as “lenses” by which the problem was explored and understood. An explanatory model was developed to highlight relationships among contributing factors. A thorough review of evidence was conducted and synthesized to support the explanatory model, and existing solutions explored. Shared-decision making in healthcare through the use of decision aids was identified and investigated as a promising direction for solution development. The Guide for Occupational ALliance (GOAL) in Pediatric Rehabilitation is a shared decision-making and measurement tool designed to facilitate collaborative goal setting with caregivers of children with ABI. The GOAL fosters a family-centered approach that provides education while facilitating discussion around caregiver preferences. Additionally, it gathers helpful outcome data on caregivers’ comfort and satisfaction with goal setting in order to gauge change over time. The GOAL implementation will involve gathering insights, testing the tool, and disseminating the findings. It will be evaluated in three phases: Phase 1, a needs-assessment process involving collection of caregiver and clinician data; Phase 2, a pilot test of the GOAL to explore its effectiveness, content relevance, validity, and benefits; and Phase 3, a repeated measure-outcomes study to understand its reliability, validity, and effectiveness. The GOAL provides an opportunity to enhance collaboration during goal setting with caregivers of children with ABI and their occupational therapy service providers for optimal outcomes.

Research has shown that Family Centered Care (FCC), or a partnership between parents and health care professionals, has a positive impact on child outcomes when a child is hospitalized and post discharge as well as on psychosocial wellbeing for the family as a whole (Glang, McLaughlin, & Schroeder, 2007; Harrison, Romer, Simon, & Schulze, 2007; Bamm & Rosenbaum, 2008; An & Palisano, 2014; Foster, Whitehead, & Maybee, 2010). However, throughout the literature it is evident that FCC principles, including parent participation, are not being implemented effectively in pediatric inpatient rehabilitation, leading to a disparity between what theory and evidence supports and what is seen in actual practice (An & Palisano, 2014; Aarthun & Akerjordet, 2012; Foster et al., 2010; Arcuri, McMullan, Murray, & Silver, 2015). The aim of this doctoral project was to better understand the factors that are influencing this problem as well as explore evidence-based solutions to this problem. A literature review on these topics was used to develop an educational program for pediatric occupational therapists called Engaging Families: A Continuing Education Course on Family Centered Care Principles and Practice. Engaging Families is a two-day training course educating pediatric occupational therapists on FCC strategies and implementation of these strategies in order to effectively incorporate parents in their child’s inpatient occupational therapy process.

Increasingly, virtual reality therapy (VRT) technologies are being used to augment pediatric rehabilitation. The mechanisms underlying success/failure of VRTs are not well understood. This thesis proposed an innovative 3-phase framework for evaluating VRT technologies with respect to neuroplasticity based on results of a scoping review of 21 studies. A case study was undertaken to demonstrate use of the framework to design and evaluate ‘Musical Steps’, a VRT technology aimed at promoting heel contact in toe-walking children. 5 therapists and 4 children were engaged in this study. The system accurately detected 88%(SD=7%) of heel contacts and was rated positively in usability testing (phase 1). Feasibility studies indicated that, while enjoyable, children did not understand the feedback provided and hence, heel contact was not increased (phase 2). These findings will direct future reiterations prior to evaluating clinical impact (phase 3). The proposed framework may enhance design and translation of therapeutically relevant VRTs.

Increasingly, virtual reality therapy (VRT) technologies are being used to augment pediatric rehabilitation. The mechanisms underlying success/failure of VRTs are not well understood. This thesis proposed an innovative 3-phase framework for evaluating VRT technologies with respect to neuroplasticity based on results of a scoping review of 21 studies. A case study was undertaken to demonstrate use of the framework to design and evaluate ‘Musical Steps’, a VRT technology aimed at promoting heel contact in toe-walking children. 5 therapists and 4 children were engaged in this study. The system accurately detected 88%(SD=7%) of heel contacts and was rated positively in usability testing (phase 1). Feasibility studies indicated that, while enjoyable, children did not understand the feedback provided and hence, heel contact was not increased (phase 2). These findings will direct future reiterations prior to evaluating clinical impact (phase 3). The proposed framework may enhance design and translation of therapeutically relevant VRTs.

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).

Este proyecto consiste en el diseño de un Centro de Salud del Primer Nivel de Atención especializado en la rehabilitación integral de niños y adolescentes. Se basa en una arquitectura terapéutica con la que se diseña un establecimiento de salud generando espacios amplios y abiertos hacia jardines terapéuticos, integrando los espacios naturales y recreativos con las áreas de tratamiento. Se busca resolver la problemática de nuestra ciudad en la cual tenemos un déficit de centros de salud especializados en la rehabilitación pediátrica. El proyecto se ubica estratégicamente en el distrito de Los Olivos por la demanda en este sector de la población, y la falta de centros de salud de la zona. La población a servir son menores de 18 años con ciertas limitaciones, para que puedan desarrollarse y reintegrarse en la sociedad de manera adecuada. / The project consists of the design of a Pediatric Rehabilitation Center. It is based on a therapeutic architecture that is used in designing a healthcare building by creating wide and open spaces to the gardens thus contributing to the user’s rehabilitation.  It is intended to integrate the therapeutic gardens and natural areas of the project alongside the treatment areas with the objective to provide care for children and young people from an early age in order for them to develop and reintegrate themselves into society adequately. The project's location is in Los Olivos's district in the northern part of Lima due to the high demand of users and the lack of infrastructure in the area to help them. / Tesis