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INTRODUCTION Halliwick aquatic therapy is a rehabilitation intervention that is gaining popularity for people with disabilities. This scoping review provides an overview on the state of research about the impact of Halliwick aquatic therapy for children with disabilities. METHODS Four electronic databases were searched to obtain research on the use of the Halliwick method for paediatric rehabilitation: Medline, CINAHL, Embase and PsycINFO. Potential citations were first screened by title and abstract, and full texts were then examined on the second round of screening. We analyzed the demographic details of their study population, how therapy was implemented (e.g., lesson frequency or structure), and what measurements were used, with measured variables mapped onto the domains of the framework for health of the WHO's International Classification of Functioning, Disability and Health (ICF). RESULTS Twenty-four publications met the inclusion criteria for this review. The majority of research included children with cerebral palsy (n = 12) or autism spectrum disorder (n = 8), with very few studies including other disabilities (n = 5). There was a wide variation in the number of lessons per study and how each lesson was structured. Fourteen studies lacked a control group. Looking at ICF domains, all 24 articles measured variables pertaining to body structure and functions, four looked for changes in performance of daily activities, four into ability to participate in social roles, and seven into changes in personal factors. CONCLUSION There is no consensus on how the Halliwick method should be structured for participants, leaving a gap for future research on programme implementation. To shift our viewpoint beyond what a disability prevents to what one's level of health and functioning allows, it is important to broaden the scope of research into the other ICF domains.

Introduction In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops. Methods Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned. Findings Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent–researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding. Conclusion Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together.

The Gross Motor Function Measure-88 (GMFM-88) is a standardized observational instrument measuring gross motor function for children with cerebral palsy and Down syndrome. Clinicians in Croatia have been showing a growing interest in GMFM-88. However, only the English version of the measure was available, which possessed a barrier for its use in Croatia. The aim of this study was to translate the GMFM-88 test from English into Croatian and adapt it for use in clinical practice in Croatia. In this study, we followed the first five steps of the Sousa & Rojjanasrirat (2010) guideline for translation and adaptation. First, two authors independently did “forward” translation; a translation of the score sheet from English into Croatian. Then, the third author performed “backward” translation, which was checked and revised by the measure’s author. The pre-final version of the translated measure was tested through cognitive debriefing with seven clinicians. Participants pointed out the importance of the consistent use of terms and provided suggestions for improvement, such as changed word order or shortening of the translated items. Seventy two of 88 items were changed. With this study, we have initiated the adaptation of the GMFM-88 to Croatian. The next steps for fully validated GMFM-88 in the Croatian language is to do psychometric testing with children with cerebral palsy and Down syndrome in Croatia., Instrument za procjenu grubih motoričkih funkcija (eng. Gross Motor Function Measure-88 – GMFM-88) standardizirani je opservacijski instrument za procjenu grubih motoričkih funkcija za djecu s cerebralnom paralizom i Downovim sindromom. Kliničari u Hrvatskoj pokazuju sve veći interes za korištenje GMFM-88 testa. No, do sada je bila dostupna samo engleska verzija instrumenta, koja je otežavala njegovu primjenu u Hrvatskoj. Cilj ovog istraživanja bio je prevesti GMFM-88 bodovni list s engleskog na hrvatski jezik i prilagoditi ga za primjenu u kliničkoj praksi. U ovom istraživanju slijedili smo prvih pet koraka smjernica Sousa i Rojjanasrirat (2010.) za prijevod i prilagodbu GMFM-88 bodovnog lista. Prvo, dva autora neovisno su napravila “forward” prijevod; prijevod bodovnog lista s engleskog na hrvatski jezik. Zatim je treći autor napravio “backward” prijevod, koji je provjeren i revidiran od strane autora GMFM-88 testa. Predfinalna verzija prevedenog instrumenta testirana je kroz tzv. “cognitive debriefing” sa sedam kliničara. Ispitanici su ukazali na važnost dosljedne upotrebe određenih riječi te su iznijeli prijedloge za poboljšanje, poput promjene redoslijeda riječi ili skraćenja prevedenih čestica. Promijenjene su 72 od 88 čestica. Ovim istraživanjem započeta je prilagodba GMFM-88 na hrvatski jezik. Sljedeći korak do potpuno validiranog GMFM-88 testa na hrvatskom jeziku je psihometrijsko testiranje djece s cerebralnom paralizom i Downovim sindromom u Hrvatskoj.

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).

Purpose of Review Traditional thinking and focus in 'childhood disability' have been on the child with the impairment - with the imperative to make the right diagnosis and find the right treatments. The implicit if not direct expectation was that interventions should aim to 'fix' the problems. Professionals have led the processes of investigation and management planning, with parents expected to 'comply' with professionals' recommendations. Much less attention has been paid to parents' perspectives or their wellbeing. Recent Findings In the past two decades, we have seen a sea change in our conceptualizations of childhood disability. The WHO's framework for health (the International Classification of Functioning, Disability and Health (aka ICF)) and CanChild's 'F-words for Child Development' inform modern thinking and action. We now recognize the family as the unit of interest, with parents' voices an essential element of all aspects of management. The goals of intervention are built around the F-words ideas of function, family, fun, friendships, fitness and future. Summary There has been world-wide uptake of the F-words concepts, with increasing evidence of the impact of these ideas on parents and professionals alike. There are important implications of these developments on the structure, processes and content of services for children with neurodevelopmental disorders, their families and the services designed to support them.

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 REHABILITATION Grandparents 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.