Participação em casa e fatores pessoais e ambientais em crianças e adolescentes com síndrome de Down.

OBJETIVO: Descrever a participação em casa atual (frequência, envolvimento) e o desejo do cuidador por mudança na participação em casa de crianças e adolescentes com síndrome de Down, bem como fatores ambientais da casa, e explorar as associações de fatores pessoais e ambientais com a participação atual e o desejo do cuidador por mudança. MÉTODO: Oitenta e dois cuidadores (média de idade = 45 anos e 10 meses) de crianças e adolescentes com síndrome de Down (média de idade = 10 anos e 7 meses) foram entrevistados sobre a participação em casa da criança e fatores ambientais utilizando a Medida de Participação e do Ambiente ­ Crianças e Jovens. Além disso, foram coletados fatores pessoais e ambientais das crianças. Os resultados são relatados por meio de análise descritiva e correlações (coeficientes de correlação de Spearman ou teste U de Mann­Whitney) para descrever a relação entre a participação atual e o desejo do cuidador por mudança, com fatores pessoais e ambientais, para as variáveis ordinais e nominais, respectivamente (p < 0,05). RESULTADOS: A participação das crianças foi maior em cuidados pessoais e menor em atividades relacionadas à escola. A maioria dos cuidadores desejava mudança nas lições de casa e nas tarefas domésticas. Maior frequência de participação foi associada ao sexo masculino, distanciamento social menos rigoroso do cuidador devido à pandemia de covid­19 e crianças recebendo terapia. O maior envolvimento na participação foi associado a uma idade mais jovem nas crianças e a um maior apoio do ambiente. A idade mais avançada das crianças foi associada ao maior desejo por mudança do cuidador. INTERPRETAÇÃO: Fatores pessoais e ambientais são correlacionados com a participação de formas específicas. Devem ser realizadas estratégias criativas para promover a participação e que considerem os desejos do cuidador.

Home participation and personal and environmental factors in children and adolescents with Down syndrome.

AIM: To describe current home participation (frequency, involvement) and caregiver's desire for change in home participation of children and adolescents with Down syndrome, as well as home environmental factors, and to explore the associations of personal and environmental factors with current participation and caregiver's desire for change. METHOD: Eighty-two caregivers (mean age = 45 years 10 months) of children and adolescents with Down syndrome (mean age = 10 years 7 months) were surveyed about the child's home participation and environmental factors using the Participation and Environment Measure-Children and Youth. Furthermore, children's personal and environmental factors were collected. Results are reported using descriptive analysis and correlations (Spearman's rank correlation coefficients and Mann-Whitney U test) to describe the relationship between current participation and caregiver's desire for change, with personal and environmental factors as ordinal and nominal variables respectively (p < 0.05). RESULTS: Children's participation was highest with regard to personal care management and lowest with regard to school-related activities. Most caregivers desired change in homework and household chores. Greater frequency was associated with male sex, caregiver less rigorous social distancing due to the COVID-19 pandemic, and children receiving therapies. Greater involvement was associated with younger age in children and higher environmental support. Older age in children was associated with caregiver's greater desire for change. INTERPRETATION: Personal and environmental factors correlated with participation in specific ways. Creative strategies to promote participation that consider caregiver's wishes should be undertaken.

Association between participation at home and functional skills in children and adolescents with Down syndrome: A cross-sectional study.

BACKGROUND: According to a biopsychosocial approach to health and disability, participation at home and functional skills are important components of the functioning. Therefore, knowledge about interactions between these components allows for targeting specific interventions. OBJECTIVE: This study investigated whether participation opportunities (frequency and involvement) for children/adolescents with Down syndrome (DS) in a realistic environment at their own home are associated with the functional skills related to the domains of Daily Activities, Mobility, Social/Cognitive and Responsibility. METHODS: This was an observational study. Forty-eight children/adolescents with DS participated (mean age: 10.73 ± 3.43; n = 27 females). Participants were evaluated using the Participation and Environment Measure for Children and Youth (PEM-CY) home environment setting (raw frequency and engagement scores) and Pediatric Evaluation of Disability Inventory speedy version (PEDI-CAT-SV) (continuous score). RESULTS: Significant and positive correlations were found between the frequency of participation at home with Daily Activities (ro = 0.320), Social/Cognitive (ro = 0.423) and Responsibility (ro = 0.455). For involvement, significant and positive correlations were found with Daily Activities (ro = 0.297), Social/Cognitive (ro = 0.380) and Responsibility (ro = 0.380). For the PEDI-CAT-SV Mobility, no significant correlation was found. CONCLUSIONS: Higher frequency and involvement of participation at home are associated with greater functional skills assessed, except for Mobility. This study provided pioneering insights about the relationships between the level of home participation and functional skills in DS, generating evidence that could guide approaches to participation-focused intervention.

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.

A Mixed-Methods Feasibility Study of Integrated Pediatric Complex Care: Experiences of Parents With Care and the Value of Parent Engagement in Research.

Introduction: Children with medical complexity (CMC) are among the most vulnerable children in society. These children and their families face challenges of fragmented care and are at risk for poorer health outcomes. Families with CMC play a vital role in providing care and navigating the complexities of healthcare systems. It is essential to understand the best ways to engage these families in research to improve the care and optimize the health of CMC. Objectives: This study explored parent engagement within the context of a feasibility study evaluating an Integrated Tertiary Complex Care (ITCC) clinic created to support CMC closer to home. This paper aimed: (1) to understand the family experiences of care and (2) to explore parent engagement in the study. Method: This mixed-methods feasibility study included three components. First, feedback from focus groups was used to identify the common themes that informed interviews with parents. Second, one-on-one interviews were conducted with parents to explore their experience with care, such as the ITCC clinic, using an interpretative description approach. Third, the questionnaires were completed by parents at baseline and 6-months post-baseline. These questionnaires included demographic and cost information and three validated scales designed to measure the caregiver strain, family-centered care, and parental health. The recruitment rate, percentage completion of the questionnaires, and open-ended comments were used to assess parent engagement in the study. Results: The focus groups involved 24 parents, of which 19 (14 women, five men) provided comments. The findings identified the importance of Complex Care Team (CC Team) accessibility, local access, and family-centered approach to care. The challenges noted were access to homecare nursing, fatigue, and lack of respite affecting caregiver well-being. In this study, 17 parents participated in one-on-one interviews. The identified themes relevant to care experience were proximity, continuity, and coordination of care. The parents who received care through the ITCC clinic appreciated receiving care closer to home. The baseline questionnaires were completed by 44 of 77 (57%) eligible parents. Only 24 (31%) completed the 6-month questionnaire. The challenges with study recruitment and follow-up were identified. Conclusion: Family engagement was a challenging yet necessary endeavor to understand how to tailor the healthcare to meet the complex needs of families caring for CMC.

Promoting capacities for future adult roles and healthy living using a lifecourse health development approach.

Purposes: First, to describe how young adults with cerebral palsy (CP) experience lifecourse health development, and second, to create key messages for pediatric health service providers to promote children's capacities for future adult roles and healthy adult living.Methods: Interpretive description qualitative design. Participants were a purposive sample of 23 young adults with CP, 25-33 years of age, who varied in functional abilities, education, living, and work situations. Three experienced interviewers conducted 50-60 min interviews. Transcripts were analyzed to identify themes. Subsequently, a one-day meeting was held with an advisory group to inform our interpretive description of key messages.Results: Four themes emerged from the interviews: personal lifecourse, contexts for healthy living, health development through everyday experiences, and healthy living as an adaptive process. Key messages for service providers are: (a) address healthy living across the lifecourse, (b) focus on contexts of healthy living, (c) focus on everyday experiences and experiential learning, and (d) pay attention to the timing of opportunities and experiences.Conclusion: The findings provide first steps toward adoption of an approach to lifecourse health development for individuals with CP that emphasizes physical, mental, and emotional wellbeing and goals for desired social participation over the lifecourse.Implications for rehabilitationYoung adults with cerebral palsy experience lifecourse health development as a personal ongoing and dynamic process occurring in many contexts.Individuals with cerebral palsy continually adjust to changing contexts (adaptive process).Everyday experiences and experiential learning enable individuals with cerebral palsy to develop capacities for current and future healthy living including social participation."Timing" of opportunities and experiences is important for health development.

Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians.

BACKGROUND: Health for people with cerebral palsy (CP) must extend beyond physical impairments to include social, environmental, and psychological factors that are rarely captured by quantitative research alone. This qualitative study sought to explore the lived experience of young people with CP with their physical, mental, and emotional health in the context of a larger longitudinal Canadian study focusing on brain function, physical and mental health, and well-being. METHODS: An integrated research team (including people with CP or other impairments, clinicians, and researchers) was formed to study participant-identified research needs. A purposive sample of 16 people with CP (seven female), aged 17-29, Gross Motor Function Classification System (GMFCS) levels I-V, participated in three focus groups that were conceptualized and analysed using interpretive description methodology. RESULTS: This study reports the experiences of people with CP across GMFCS levels and identifies some consequences of growing up with the condition: physical and mental health issues, importance of meaningful participation, impact of the environment, and identity formation. Participants shared challenges related to accessibility, healthcare, social/environmental supports, relationships, and sustainable employment. DISCUSSION: Body structure and function challenges impact participation in activities of daily living, threatening participants' ability to form positive identities and live meaningful lives. People with CP desire to work but may require additional training, accommodation, and support to do so. Environmental conditions, including relationships, supportive people, and accessibility, shape participants' health, well-being, and social/civic engagement. This study confirms the need for improved care for adults with CP, including multidisciplinary adult health team(s) and community services.

Life course health development of individuals with neurodevelopmental conditions.

The life course health development (LCHD) model by Halfon et al. conceptualizes health development occurring through person-environment transactions that enable well-being and participation in desired social roles throughout life, areas that have not received adequate attention in healthcare. The aim of this 'perspectives' paper is to apply the six core tenets of the LCHD model and the concept of health development trajectories to individuals with lifelong neurodevelopmental conditions. We share the perspective that modifiable aspects of the environment often restrict health development; we then advocate that children, beginning at a young age, should engage in 'real-world' experiences that prepare them for current and future social roles. LCHD encourages future planning from the outset, continuity of care between pediatric and adult systems, and coordination of services and supports. We believe LCHD can be transformative in enabling healthy living of individuals with neurodevelopmental conditions.

Are two youth-focused interventions sufficient to empower youth with chronic health conditions in their transition to adult healthcare: a mixed-methods longitudinal prospective cohort study.

OBJECTIVES: To assess use, utility and impact of transition interventions designed to support and empower self-management in youth with chronic health conditions during transition into adult healthcare. DESIGN: A 4-year mixed-method prospective cohort study. SETTING: 2 academic paediatric hospitals (13 clinics) in Canada. PARTICIPANTS: 50 adolescents (42% male; mean age 17.9±0.9 years; 20 underlying diagnoses) with transfer to adult care planned within 1 year. INTERVENTIONS: The Youth KIT (an organisational tool that includes goal setting activities); an online transition mentor. MAIN OUTCOME MEASURES: Frequency of use, utility and impact of the transition interventions; goal achievement; post-transfer qualitative interviews with youth. RESULTS: 50 participants were enrolled during their last year of paediatric care; 36 (72%) were followed into adult care. All participants had access to the transition interventions from enrolment until the end of the study (exposure time: 12-47 months). Most youth (85%) reported using the medical/health section of the Youth KIT at least once; 20 (40%) participants engaged in chats with the mentor. The overall perceived utility of both interventions was modest; the Youth KIT received the highest ratings for 'help with goal setting': (mean (SD): 4.2 (2.3)) on a 7-point Likert scale. 45 (90%) participants set 294 transition goals. Goal achievement performance and satisfaction increased over time (p≤0.001). The qualitative evidence revealed reasons behind the variability in use and utility of the interventions, the interconnectedness of life-course and healthcare transitions, and the need for stronger partnerships between paediatric and adult healthcare systems. CONCLUSIONS: Participants' perceptions about the utility of the Youth KIT and the online mentor were modest. Transition supports need to be carefully tailored, timed and integrated into healthcare systems. Individualised goal setting may be an important 'active ingredient' in optimising transition supports and outcomes. Interventions that focus on youth only are insufficient for empowering self-management.