Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent-researcher partnership.

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.

Exploring the use of Halliwick aquatic therapy in the rehabilitation of children with disabilities: A scoping review.

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.

Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities.

Family-centred service (FCS) acknowledges the importance of family engagement in therapeutic processes and focuses on the needs of all family members. This way of thinking and practicing is becoming increasingly recognized as an optimal care delivery model for families of children with developmental disabilities (DDs). However, in most places, disability services are oftentimes 'child-centric', wherein family members are seen only as partners in therapy or care delivery, while their own 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 service infrastructure oriented towards parent-specific needs in existing service delivery models. This concept paper highlights the known challenges associated with parenting a child with a DD and discusses the intersectionality of factors impacting parental health and well-being, with a goal of promoting more equitable, holistic, and inclusive healthcare for all family members of children with DDs.

Co-designing solutions to enhance access and engagement in pediatric telerehabilitation.

Introduction: Prior to the COVID-19 pandemic, children's therapy appointments provided by Ontario's publicly-funded Children's Treatment Centre (CTCs) primarily occurred in-person. With COVID-19 restrictions, CTCs offered services via telerehabilitation (e.g., video, phone), which remains a part of service delivery. CTC data shows that families experience barriers in attending telerehabilitation appointments and may need supports in place to ensure service accessibility. Our study aimed to co-design innovative solutions to enhance access and engagement in ambulatory pediatric telerehabilitation services. This manuscript reports the co-design process and findings related to solution development. Methods: This research project used an experience based co-design (EBCD) approach, where caregivers, clinicians and CTC management worked together to improve experience with telerehabilitation services. Interview data were collected from 27 caregivers and 27 clinicians to gain an in-depth understanding of their barriers and successes with telerehabilitation. Next, 4 interactive co-design meetings were held with caregivers, clinicians and CTC management to address priorities identified during the interviews. Using qualitative content analysis, data from the interviews and co-design meetings were analyzed and findings related to the solutions developed are presented. Findings: Four topics were identified from the interview data that were selected as focii for the co-design meetings. Findings from the co-design meetings emphasized the importance of communication, consistency and connection (the 3C's) in experiences with telerehabilitation. The 3C's are represented in the co-designed solutions aimed at changing organizational processes and generating tools and resources for telerehabilitation services. Discussion: The 3C's influence experiences with telerehabilitation services. By enhancing the experience with telerehabilitation, families will encounter fewer barriers to accessing and engaging in this service delivery model.

Patients and Families as Partners in Patient-Oriented Research: How Should They Be Compensated?

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and family partners and report how existing resources can be leveraged to compensate patient and family partners fairly and appropriately. We also present some of our first-hand experiences with patient and family compensation and offer suggestions for research leaders, agencies, and organizations so that the health care stakeholders can collectively move toward more equitable recognition of patient and family partners in research.

A scoping review of the literature on grandparents of children with disabilities.

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 REHABILITATIONGrandparents 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.

Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review.

BACKGROUND: It is well recognized that parents of children with neurodevelopmental disabilities can experience a considerable burden of care associated with their child's disability, which can potentially impact their functioning and quality of life. Historically, the intervention efforts in pediatric rehabilitation have focused primarily on the child's development and well-being and much less on parental and family well-being. The impact that a child's diagnosis might have on parents remains unclear, and it is unknown how we can best support parents on their journey of childhood disability. It is, therefore, important to synthesize the published evidence on interventions for parents of children with neurodevelopmental disabilities so that clinicians can be better informed about the ways in which families they work with can be supported. OBJECTIVE: This manuscript presents the protocol for a systematic review of the effectiveness of interventions aiming to improve the physical, psychological, or socioeconomic well-being of parents of children with neurodevelopmental disabilities when compared to usual care or no care. METHODS: We will systematically search 4 databases (MEDLINE, Embase, PsycINFO, and CINAHL) from the year 2000 until the search date, for randomized controlled trials that evaluated the effectiveness of interventions to improve parental physical, psychological, or socioeconomic well-being. Two authors will independently screen the titles and abstracts, which will then be followed by full-text screening. After the eligibility assessment, two reviewers will independently extract data and conduct a risk of bias assessment using the Cochrane risk-of-bias tool. We will assess the quality of evidence using the Grading of Recommendations, Assessment, Development and Evaluation approach. If the data allow, we will perform a pairwise meta-analysis or network meta-analysis. We plan to evaluate the coherence of the network with a global test by using the node-splitting method. RESULTS: As of May 30, 2022, there have been two searches of data initiated: in September 2020 for articles published since 2000 and an updated search in January 2022 for articles published since 2020. We have screened all the titles and abstracts and performed eligibility assessment. However, the final number of references is still not available due to the additional information needed for some of the potentially eligible studies. The results from this systematic review will be published in an indexed journal within a year after this protocol is published. CONCLUSIONS: This study is expected to identify a variety of programs to address the well-being needs of parents of children with neurodevelopmental disabilities and provide directions on how parents can best be supported within health care. Such interventions might help professionals and stakeholders in creating service delivery models that can enhance parental well-being and minimize the risks to their physical, psychological, and socioeconomic functioning. TRIAL REGISTRATION: PROSPERO CRD42021230706; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=230706. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38686.

Parenting a Child with a Neurodevelopmental Disorder.

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.