Illuminating their reality: the use of metaphor by parents of children with disabilities to express their experiences of health care.

PURPOSE: To explore the nature and meaning of metaphors used by parents of children with disabilities when describing their healthcare experiences. METHOD: A systematic procedure was used to identify and analyze metaphors spontaneously mentioned by parents in 13 focus groups held with 65 Canadian parents of children with disabilities. Attention was paid to identifying deep (i.e., meaningful) metaphors rather than common expressions. RESULTS: A total of 214 deep metaphors were identified and categorized into four target-source groupings. Parents used journey metaphors to describe experiences of uncertainty, conflict and harm metaphors to describe confrontational, harmful, and demeaning experiences of care, games and puzzles to describe the unknowns of care and attempts to resolve these unknowns, and metaphors concerning environmental barriers (i.e., walls and doors) to express feelings of exclusion and difficulties accessing care. CONCLUSIONS: Parents' metaphors expressed experiences of uncertainty, powerlessness, and attempts to exert agency in healthcare interactions. The metaphorical groupings provide new insights into how and why lack of family-centeredness in service delivery is bewildering, distressing, and disempowering to parents. Implications for service providers include paying attention to what metaphor use reveals about parents' experiences, and discussing parents' metaphors with them to create joint understanding, providing a fertile ground for collaboration.

Study findings indicated a clear lack of family-centeredness in gaining access to services, communicating with service providers and being listened to, and in decision-making power.Given that many service providers believe they are family-centered, the strong negative connotations of the metaphors used by parents are surprising and worrisome.Parents' use of metaphors not only reflects a lack of family-centered care, but indicates that parents experience unintentional harm in their interactions with service providers.Service providers can benefit from knowing the fundamental issues of uncertainty and power that underlie parents' use of metaphors to communicate vividly the tensions and issues they face.

Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health.

BACKGROUND: When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions. AIMS: This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery. METHODS AND PROCEDURES: A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis. RESULTS: For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized. CONCLUSIONS: The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service.

Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research.

BACKGROUND: While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15-17 years old. Our research team created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout our multi-year and multi-stage project. MAIN BODY: This commentary, initiated and co-authored by members of our PFAC, researchers, staff, and a trainee, describes how we corrected the course of our partnership in response to critical feedback from partners. We begin by highlighting an email testimonial from a young adult PFAC member, which constituted a "critical turning point," that unveiled feelings of unclear expectations, lack of appreciation, and imbalanced relationships among PFAC members. As a team, we reflected on our partnership experiences and reviewed documentation of PFAC activities. This process allowed us to set three intentions to create a collective goal of authentic and meaningful engagement and to chart the course to get us there: (1) offering clarity and flexibility around participation; (2) valuing and acknowledging partners and their contributions; and (3) providing choice and leveraging individual interests and strengths. Our key recommendations include: (1) charting the course with a plan to guide our work; (2) learning the ropes by developing capacity for patient-oriented research; (3) all hands on deck by building a community of engagement; and (4) making course corrections and being prepared to weather the storms by remaining open to reflection, re-evaluation, and adjustment as necessary. CONCLUSIONS: We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research.

Tasks performed by parents to enable telepractice for children with communication disorders: an interview study with clinicians and parents.

PURPOSE: Current service models in childhood rehabilitation promote the active participation of parents/caregivers in their children's therapies. The existing literature provides a limited understanding of the tasks and responsibilities parents undertake in their children's therapies, especially over telepractice. This study describes the tasks undertaken by parents in their children's speech therapy delivered virtually during the COVID-19 pandemic. METHODS: A qualitative descriptive study was conducted with parents and speech-language pathologists, using open-ended interviews. Interviews were analyzed using a combination qualitative content analysis and thematic analysis. RESULTS: Parents performed many tasks to enable telepractice. These tasks happened before (e.g., setting up both physical and virtual space for therapy), during (e.g., managing child's behavior), and after the virtual therapy session (e.g., carrying out home practice). While parents were willing to perform these tasks in order to help their children, some expressed the toll that it can take on them. CONCLUSIONS: Compared to what is known from in-person visits, some of these tasks were novel and unique to telepractice. We recommend that clinicians and parents collaboratively decide on tasks and responsibilities to avoid burdening parents, and that they weigh the costs associated with performing these tasks against the benefits of teletherapy.IMPLICATIONS FOR REHABILITATIONParents perform many tasks to support their children's therapies, both during and outside of therapy sessionsTherapies delivered virtually require parents to assume additional tasks to support their childrenFor services to be Family-Centered, tasks and responsibilities need to be decided collaboratively between parents and clinicians.

Establishing and sustaining authentic organizational partnerships in childhood disability research: lessons learned.

There is an increased interest from both researchers and knowledge users to partner in research to generate meaningful research ideas, implement research projects, and disseminate research findings. There is accumulating research evidence to suggest the benefits of engaging children/youth with disabilities and their parents/families in research partnerships; however, less is known about the benefits of, and challenges to, engaging organizations as partners in research. The purpose of this commentary is to reflect on successful organizational partnership experiences from the perspectives of researchers at an internationally-recognized childhood disability research centre (CanChild), and to identify and share key ingredients for developing partnerships between organizations and academic institutions. A companion study is underway to examine partnership experiences with CanChild from the partners' perspective. Four CanChild researchers and two co-facilitators participated in a collaborative auto-ethnography approach to share experiences with organizational research partnerships and to reflect, interpret, and synthesize common themes and lessons learned. The researchers and facilitators met virtually via Zoom for 105 min. Researchers were asked to discuss the following: the formation of their organizational partnerships; if/how partnerships evolved over time; if/how partnerships were sustained; and lessons learned about benefits and challenges to building research partnerships with organizations. The meeting was recorded, transcribed verbatim, and analyzed by the facilitators to identify and synthesize common experiences and reflections. Multiple rounds of asynchronous reflection and feedback supported refinement of the final set of analytic themes. Researchers agreed that partnerships with organizations should be formed through a mutual interest, and that partnerships evolved by branching to include new organizations and researchers, while also involving trainees. Researchers identified the importance of defining roles and responsibilities of key individuals within each partnering group to sustain the partnership. Lessons learned from organizational partnerships included reciprocity between the partnering organization and academic institution, leveraging small pockets of funds to sustain a partnership over time, and building a strong rapport with individuals in a partnership. This commentary summarized lessons-learned and provided recommendations for researchers and organizations to consider when forming, growing, and sustaining research partnerships over time.

Researchers and people who use research findings are partnering to create research projects and share results. There are examples of children with disabilities and their families participating in research partnerships, but less is known about the involvement of healthcare organizations and community organizations as research partners. The purpose of this article is to share successful examples of partnership between organizations and a childhood disability research centre from the perspective of researchers. Four researchers and two facilitators met to reflect on their experiences with organizational research partnerships. They met online for 105 min using Zoom software. The researchers were asked to talk about how their partnerships with organizations were formed, how they grew over time, and how they were maintained. The meeting was recorded, and the facilitators took the researchers' experiences and summarized them into common messages. Everyone then read the summary on their own and added their ideas. This happened three different times until everyone agreed on one set of ideas. The researchers agreed that partnerships with organizations should be formed through common goals, that they should grow to include new partners and junior researchers, and that clear roles and responsibilities were needed to keep the partnership going. The experiences shared in this article are valuable to other researchers and organizations that are interested in forming research partnerships.

What do parents want from healthcare services? Reports of parents' experiences with pediatric service delivery for their children with disabilities.

PURPOSE: Family-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0). METHODS: A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis. RESULTS: Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child's care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling. CONCLUSIONS: This article identifies components of healthcare that families find helpful and desirable.Implications for RehabilitationFamily-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare.However, parents continue to experiences aspects of care that are not family-centred.Parents of children with disabilities identified components of care that they want from healthcare services.New components of care that go beyond what was identified in the original measure of FCS (MPOC) include: effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling.

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 commentary on the healthcare transition policy landscape for youth with disabilities or chronic health conditions, the need for an inclusive and equitable approach, and recommendations for change in Canada.

There is a growing number of youth with healthcare needs such as disabilities or chronic health conditions who require lifelong care. In Canada, transfer to the adult healthcare system typically occurs at age 18 and is set by policy regardless of whether youth and their families are ready. When the transition to adult services is suboptimal, youth may experience detrimental gaps in healthcare resulting in increased visits to the emergency department and poor healthcare outcomes. Despite the critical need to support youth with disabilities and their families to transition to the adult healthcare system, there is limited legislation to ensure a successful transfer or to mandate transition preparation in Canada. This advocacy and policy planning work was conducted in partnership with the Patient and Family Advisory Council (PFAC) within the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities (BBD) Project and the CHILD-BRIGHT Policy Hub. Together, we identified the need to synthesize and better understand existing policies about transition from pediatric to adult healthcare, and to recommend solutions to improve healthcare access and equity as Canadian youth with disabilities become adults. In this perspective paper, we will report on a dialogue with key informants and make recommendations for change in healthcare transition policies at the healthcare/community, provincial and/or territorial, and/or national levels.

Factors influencing the success of telepractice during the COVID-19 pandemic and preferences for post-pandemic services: An interview study with clinicians and parents.

BACKGROUND: There has been a significant uptake in the use of telepractice during the coronavirus SARS-CoV-2 (COVID-19) pandemic. This study explored the experiences of speech and language therapists (SLTs), assistants (SLTAs) and parents with telepractice during the COVID-19 pandemic. AIMS: (1) To identify factors that influenced success of telepractice; and (2) to describe clinicians' and parents' preferences for the future mode of service delivery for preschoolers with communication disorders. METHODS & PROCEDURES: The study was conducted in partnership with one publicly funded programme in Ontario, Canada, that offered services to preschoolers with speech, language and communication needs at no cost. SLTs (N = 13), assistants (N = 3) and parents (N = 13) shared their experiences and perspectives during semi-structured videoconference interviews. OUTCOMES & RESULTS: Factors that influenced the success of telepractice were reported in three categories: the setting (i.e., where and how telepractice was being delivered); the nature of telepractice (i.e., the services that were provided via telepractice); and the individuals (i.e., who was involved in telepractice). These factors were reported to interact with each other. As the needs for each child and family are unique, parents and clinicians reported a preference for a hybrid and flexible service delivery model in the future. CONCLUSIONS & IMPLICATIONS: The themes identified in this study can be used by clinicians and managers to consider factors that influence the success of telepractice for children and families. WHAT THIS PAPER ADDS: What is already known on the subject? Studies conducted before the COVID-19 pandemic showed that telepractice was an effective and acceptable service approach. However, some clinicians and parents reported wanting to resume in-person visits. The provision of telepractice services to families with children with communication disorders increased significantly during COVID-19. What this paper adds to existing knowledge? Parents and clinicians shared factors that influenced the success of telepractice during semi-structured interviews. Factors were identified in three categories: the setting (i.e., where and how telepractice was being delivered); the nature of telepractice (i.e., the services that were provided via telepractice); and the individuals (i.e., who were involved in telepractice). As each child's and family's needs are unique, parents and clinicians reported a preference for a hybrid and flexible service delivery model in the future. What are the potential or actual clinical implications of this work? SLTs and SLT managers can use the factors identified to discuss with parents and decide whether telepractice may be well suited to the needs of each child and family.

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.

ENabling VISions and Growing Expectations (ENVISAGE): Parent reviewers' perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability.

AIMS: This study reports parents' perspectives of, ENVISAGE: ENabling VISions And Growing Expectations. ENVISAGE - co-designed by parents and researchers - is an early intervention program for parents raising children with neurodisability. METHODS AND PROCEDURES: Using an integrated Knowledge Translation approach, this feasibility study explored parents' perspectives of the comprehensibility, acceptability, and usability of ENVISAGE workshops. Participants were Australian and Canadian parents of children with neurodisabilities, ≥12 months post-diagnosis, who independently reviewed ENVISAGE workshops using an online learning platform. Parents completed study-specific 5-point Likert-scaled surveys about individual workshops. Following this, qualitative interviews about their perceptions of ENVISAGE were conducted. Survey data were analysed descriptively, and interviews analysed inductively using interpretive description. OUTCOMES AND RESULTS: Fifteen parents completed surveys, of whom 11 participated in interviews. Workshops were reported to be understandable, relevant, and meaningful to families. ENVISAGE was judged to empower parents through enhancing knowledge and skills to communicate, collaborate and connect with others. Pragmatic recommendations were offered to improve accessibility of ENVISAGE. CONCLUSIONS AND IMPLICATIONS: ENVISAGE workshops address key issues and concerns of parents of children with neurodisability in a way that was perceived as empowering. Involving parents as reviewers enabled refinement of the workshops prior to the pilot study.

Building a culture of engagement at a research centre for childhood disability.

BACKGROUND: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. METHODS: This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. RESULTS: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family-researcher partnerships. CONCLUSION: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.

More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.