"Filling in the gap": A qualitative case study about identity construction of siblings of youth with a neurodisability.

INTRODUCTION: In families of children with a neurodisability, siblings have unique experiences that can shape their identity. There is limited information about the developmental process of how siblings form their identity. This study aims to understand the identity construction of young siblings who have a sibling with a neurodisability. METHODS: As part of a patient-oriented research program, we engaged with our Sibling Youth Advisory Council in Canada. In this qualitative case study, data from semi-structured interviews augmented by photo elicitation and graphic elicitation of relational maps were analyzed using reflexive thematic analysis. RESULTS: Nineteen sibling participants (median age = 19 years, range = 14-33 years) reflected on the uniqueness of their role during childhood. During adolescence and emerging adulthood, they became closer with their sibling with a neurodisability and increased communication with their parents about how to care for their sibling with a neurodisability. These experiences influenced how they explored and began to reconcile their sibling identity with their professional and social identities. CONCLUSION: Siblings of youth with a neurodisability discover their unique identity and require support in this developmental process. Future interventions could evaluate how supports for siblings can have an impact on the positive development of their identity.

Collaborative working in speech and language therapy for children with DLD-What are parents' needs?

BACKGROUND: Collaborative practice between therapists and parents is a key element of family-centred care and is essential if we want to address family priorities and needs in interventions. However, collaborative practice is challenging for speech and language therapists (SLTs) and parents. To facilitate collaboration, collaborative practices need to be implemented into speech and language therapy for young children with developmental language disorders (DLD) and their families. Actual change and implementation of collaboration in practice will be successful only when it corresponds with patients' needs, in our case the needs of parents of young children with DLD. AIMS: To explore parents' needs in their collaboration with SLTs during therapy for their young child with DLD. METHODS & PROCEDURES: Parents of children with (a risk of) DLD in the age of 2-6 years were eligible for participation. We recruited parents via SLTs. Twelve parents of children with DLD participated in semi-structured interviews about their needs in collaboration with SLTs. We used a phenomenological approach focusing on parents' lived experiences. We transcribed the interviews verbatim. All interviews were read/listened to and discussed by our parent panel, multiple researchers and the interviewer. Two researchers independently analysed the data using the reflective thematic analysis of Braun and Clarke. OUTCOMES & RESULTS: The analysis of the interviews resulted in six themes: (1) knowing what to expect, (2) knowing how to contribute, (3) feeling capable of supporting the child, (4) trusting the therapist, (5) alignment with parents and children's needs, preferences and priorities and (6) time and space for asking questions and sharing information. CONCLUSIONS & IMPLICATIONS: Parents want SLTs to invest time in collaborating with them. Parents need SLTs to empower them to become a collaborative partner and enable them to support their child in daily life. Parents need knowledge about the therapy process and diagnosis and skills in how to support their child's language development. Also, they need emotional support to feel secure enough to support their child, to ask questions to therapists and to bring up their own thoughts and opinions in therapy. Parents' needs are in line with collaborative working as described in literature, which underlines the importance of implementing collaborative working in speech and language therapy for young children with DLD. WHAT THIS PAPER ADDS: What is already known on the subject Several reviews have explored parents' perspectives on speech and language therapy. Results reveal parents' experiences with speech and language therapy in general, and parents' perspectives on specific topics such as shared decision-making and parents/therapists roles in therapy. What this study adds This study adds insights into parents' needs to ensure collaboration with speech and language therapists (SLTs). Parents of young children with developmental language disorders (DLD) need SLTs to invest time to create optimal collaboration. It is important for parents to have enough knowledge about DLD and the SLT process, skills and confidence in how to support their child and opportunities to share thoughts and questions with SLTs. Our results underline the importance of parents being empowered by SLTs to become a collaborative partner. What are the clinical implications of this work? When children are referred to speech and language therapy, parents often venture into an unknown journey. They need support from SLTs to become a collaborative partner in speech and language therapy. Parents need SLTs to invest time in sharing knowledge, skills and power and align therapy to parents' and child's needs, preferences, priorities and expectations.

Collaboration: How does it work according to therapists and parents of young children? A systematic review.

BACKGROUND: Collaboration between therapists and parents of children with developmental disabilities is a key element of family-centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review aims to make explicit how therapists can optimise their collaboration with parents of young children with developmental disabilities, according to the perspectives of parents and therapists. METHODS: A systematic review was conducted using the following databases: Medline (PubMed), CINAHL (OVID) and PsychINFO (OVID). Those papers were selected, which focused on collaboration using a two-way interaction between therapists and parents, exploring the perspectives of therapists and/or parents of children between 2 and 6 years. Papers needed to be published in English or Dutch between 1998 and July 2021. Included papers were synthesised using a qualitative analysis approach by two researchers independently. Results sections were analysed line-by-line, and codes were formulated and discussed by all authors. Codes were aggregated, resulting in a synthesis of specific collaboration strategies in combined strategy clusters. RESULTS: The search generated 3439 records. In total, 24 papers were selected. Data synthesis resulted in an overview of specific strategies organised into five clusters: (1) continuously invest time in your collaboration with parents, (2) be aware of your important role in the collaboration with parents, (3) tailor your approach, (4) get to know the family and (5) empower parents to become a collaborative partner. CONCLUSIONS: This systematic review resulted in an overview of concrete strategies for therapists to use in their collaboration with parents of children with developmental disabilities. The strategies formulated enable therapists to consciously decide how to optimise their collaboration with each individual parent. Making these strategies explicit facilitates change of practice from therapist-led and child-centred towards family-centred care.

Exploring individual parent-to-parent support interventions for parents caring for children with brain-based developmental disabilities: A scoping review.

BACKGROUND: Brain-based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a child with BBDD face multiple challenges that cause increased stress and high risk of mental health problems. Peer-based support by fellow parents for a various range of patient groups has shown potential to provide emotional, psychological and practical support. Here, we aim to explore existing literature on individual peer-to-peer support (iP2PS) interventions for parents caring for children with BBDD with a view to (1) explore the impact of iP2PS interventions on parents and (2) identify challenges and facilitators of iP2PS. METHOD: An extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings. RESULTS: Fourteen relevant articles revealed three major themes regarding the impact of iP2PS on parents: (1) emotional and psychological well-being, (2) quality of life and (3) practical issues. Four themes were identified describing challenges and facilitators of iP2PS: (1) benefits and burden of giving support, (2) matching parent-pairs, (3) logistic challenges and solutions and (4) training and supervision of parents providing peer support. CONCLUSIONS: This review revealed that iP2PS has a positive impact on the emotional and psychological well-being of parents, as well as the overall quality of life for families caring for a child with a BBDD. Individual P2PS offers peer-parents an opportunity to support others who are facing challenges similar to those they have experienced themselves. However, many questions still need to be addressed regarding benefits of different iP2PS styles, methods of tailoring support to individual needs and necessity of training and supervision for peer support providers. Future research should focus on defining these components and evaluating benefits to establish effective iP2PS that can be provided as standard care practice for parents.

Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood.

BACKGROUND: During the transition to adulthood, a common challenge that youth with a neurodisability may experience is learning how to navigate services in the adult care system. During this transition youth may rely on their families, including siblings, for support. However, delineation of sibling roles and responsibilities during this transition period are unclear. This study aims to identify the roles and responsibilities that siblings perceive to have with their sibling with a neurodisability during the transition to adulthood, and describe the decision-making process of how siblings chose these roles. METHODS: In this descriptive qualitative case study, siblings were eligible to participate if they were between 14 to 40 years old, had a sibling between 14 to 21 years with a childhood-onset neurodisability and spoke English. Semi-structured interviews augmented by techniques of photo elicitation and relational maps were conducted. Reflexive thematic analysis was applied to identify sibling roles, as well as the emotional and decision-making process associated with these roles. Our team partnered with siblings with lived experience in all study phases. RESULTS: Nineteen participants (median age = 19 years, range = 14 to 33 years) from 16 unique families were interviewed. Six unique roles were described: friend, role model/mentor, protector, advocate, supporter, or caregiver. The emotions that siblings experienced with each role, also known as emotional responsibility, were categorized into levels of low, medium or high. Siblings also described a four-phase decision-making process for their roles: (1) acquiring knowledge; (2) preparing plans; (3) making adjustments; and (4) seeking support. Intrapersonal characteristics, including personal identity, values and experiences, influenced roles assumed by siblings. CONCLUSIONS: Siblings identified needing support as they process their decisions and emotional responsibility in their roles when their sibling with a neurodisability is transitioning to adulthood. Resources should be developed or further enhanced to support siblings.

How can we reach long-lasting inclusive participation for all? A vision for the future.

In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.

How to support children to develop and express their coping preferences around minor invasive medical procedures: children's and parents' perspectives.

Invasive medical procedures in hospitals are major sources of stress in children, causing pain and fear. Non-pharmacological interventions are indispensable in effective pain and fear management. However, these interventions must be personalized to be effective. This qualitative study aims to gain insight into children's and parents' experiences, needs, and wishes related to supporting children to develop and express their coping preferences for dealing with pain and fear during minor invasive medical procedures in order to decrease pain and fear. A qualitative study using thematic analysis was performed. Data were collected through semi-structured interviews with children and parents who had undergone at least five minor invasive medical procedures in the last year. Nineteen children (8-18 years) and fourteen parents were interviewed individually. The experiences, needs, and wishes expressed in the interviews could be classified into one overarching theme, that of the personal process, and two content-related sub-themes: feeling trust and gaining control. The personal process was divided into two different phases, that of developing and of expressing coping preferences. Children and parents both reported it as a continuous process, different for every child, with their own unique needs. Children and parents expected personalized attention and tailored support from professionals.     Conclusion: Professionals must combine clinical skills with child-tailored care. In the process of searching for and communicating about coping preferences, children's unique needs and personal boundaries will thereby be respected. This gives children and parents increased trust and control during invasive medical procedures. What is Known: • Untreated pain and stress caused by medical procedures can have severe and important short- and long-term consequences for children. Personalized non-pharmacological interventions are an essential element of procedural pain management. What is New: • A personalized coping strategy is important for children when undergoing medical procedures. Each individual child has a personal way of expressing their own coping strategy. Children and their parents need information and the space to develop and express their individual coping preferences. • Children and parents expect to receive child-tailored care from professionals including respect for their own, unique needs and boundaries. Professionals should build trustful relationships and provide appropriately tailored autonomy around medical procedures.

'This battle, between your gut feeling and your mind. Try to find the right balance': Parental experiences of children with spinal muscular atrophy during COVID-19 pandemic.

AIMS: Parents of children with spinal muscular atrophy (SMA) often struggle with the all-consuming nature of the demands of caring for a child with substantial physical needs. Our aim was to explore experiences, challenges and needs of parents of a child with SMA in a COVID-19 pandemic situation. METHOD: Nineteen parents of 21 children (15 months to 13 years of age) with SMA types 1-3 participated in semi-structured interviews in June to July 2020. The interviews were analysed using inductive thematic analysis. RESULTS: Parents mentioned the protection of the health and well-being of the child as the central perspective and driving force during the COVID-19 pandemic. Three subthemes were identified: (1) responsibility, (2) balancing vulnerability and resilience and (3) (in)security. Some parents focused on the positive aspects during the lockdown, such as continuation of nusinersen treatment and family life. Some parents described helpful and positive cognitions to cope with the situation. In general, parents described a need for information with regard to COVID-19 and their child with SMA and a need for discussing their dilemmas and insecurities with a healthcare professional. INTERPRETATION: Parents put the health and well-being of their children first during the pandemic. From this study, we learned that parents of children with SMA need information and value direct contact with a healthcare professional to share their dilemmas and insecurities. The dialogue can help to empower parents in the conflicts and decisions they have to make during a pandemic.

Exploring key elements of approaches that support childrens' preferences during painful and stressful medical procedures: A scoping review.

PROBLEM: Children undergoing medical procedures can experience pain and distress. While numerous interventions exist to mitigate pain and distress, the ability to individualize the intervention to suit the needs and preferences of individual children is emerging as an important aspect of providing family-centered care and shared decision making. To date, the approaches for supporting children to express their preferences have not been systematically identified and described. A scoping review was conducted to identify such approaches and to describe the elements that are included in them. ELIGIBILITY CRITERIA: Studies that (a) described approaches with the aim to support children to express their coping preferences during medical procedures; (b) included the option for children to choose coping interventions; (c) included a child (1--18 years). SAMPLE: Searches were conducted in December 2019 and November 2020 in the following databases: Cinahl, Embase, PubMed and Psycinfo. RESULTS: Thirteen studies were identified that included six distinct approaches. Four important key elements were identified: 1) Aid to express preferences or choice, 2) Information Provision, 3) Assessment of feelings/emotions, 4) Feedback/Reflection and Reward. CONCLUSIONS: Identified approaches incorporate components of shared decision-making to support children in expressing their preferences during medical procedures and treatments. IMPLICATIONS: Children undergoing medical procedures can be supported in expressing their coping needs and preferences by using components of shared decision-making.

Sleep problems in children with cerebral palsy and their parents.

AIM: To describe: (1) the frequency and types of sleep problems, (2) parent-rated satisfaction with their child's and their own sleep, and (3) child factors related to the occurrence of sleep problems in children with cerebral palsy (CP) and their parents. The secondary objective was to compare the sleep outcomes of children with CP with those from typically developing children and their parents. METHOD: The Sleep section of the 24-hour activity checklist was used to assess the sleep of children with CP and their parents and the sleep of typically developing children and their parents. RESULTS: The sleep outcomes of 90 children with CP (median age 5y, range 0-11y, 53 males, 37 females, 84.4% ambulatory) and 157 typically developing peers (median age 5y, range 0-12y; 79 males, 78 females) and their parents were collected. Children with CP were more likely to have a sleep problem than typically developing children. Non-ambulatory children with CP were more severely affected by sleep problems than ambulatory children. The parents of non-ambulatory children were less satisfied about their child's and their own sleep. Waking up during the night, pain/discomfort in bed, and daytime fatigue were more common in children with CP and more prevalent in children who were non-ambulatory. INTERPRETATION: These findings highlight the need to integrate sleep assessment into routine paediatric health care practice. What this paper adds Children with cerebral palsy (CP) are more likely to have a sleep problem than typically developing peers. Non-ambulatory children with CP are more severely affected by sleep problems. One-third of parents of children with CP report feeling sleep-deprived often or always compared to a quarter of parents of typically developing children.

Parents' perspectives on nusinersen treatment for children with spinal muscular atrophy.

AIM: To gain insight into parents' perspectives about their decision-making process concerning nusinersen treatment for their child, including perceived needs and concerns, and to explore factors that influence this process. METHOD: This was an exploratory qualitative interview study among parents of children with spinal muscular atrophy types 1 to 3. Data were analysed using inductive thematic analysis. RESULTS: Nineteen parents of 16 children representing 13 families participated. A wide variety of perspectives was reported ranging from a biomedical approach, which focused on battling the disease, to a holistic approach, which aimed for a good quality of life for their child. The most important factors that helped parents to decide were honest and neutral communication with their physician and access to available information. INTERPRETATION: It is important physicians understand that there are different perspectives influencing the decision-making process. Physicians should create an environment that allows parents to accept or reject treatment by communicating honestly and openly with them and by discussing both options extensively. Clear information about pros and cons, recent developments in research, and the experiences of other parents should be made available to enable parents to make an informed decision. What this paper adds Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences. Parents' perspectives varied from battling the disease to preserving quality of life. Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment. Open communication about the pros and cons of treatment with clinicians facilitated decision-making. Clear and honest information facilitated the alignment of values and goals.

Evaluating communication partner training in healthcare centres: Understanding the mechanisms of behaviour change.

BACKGROUND: Communication between people with aphasia and their healthcare professionals (HCPs) can be greatly improved when HCPs are trained in using supportive conversation techniques and tools. Communication partner training (CPT) is an umbrella term that covers a range of interventions that train the conversation partners of people with aphasia. Several CPT interventions for HCPs have been developed and used to support HCPs to interact successfully with people with aphasia. AIMS: The objective of this study was to identify the mechanisms of change as a result of a Dutch CPT intervention, named CommuniCare, in order to evaluate and optimise the intervention. METHODS & PROCEDURES: A total of 254 HCPs from five different healthcare centres received CommuniCare. An explorative qualitative research design was chosen. Two interviews were conducted with 24 HCPs directly after and 4 months after receiving the training that was part of CommuniCare. Two conceptual frameworks were used to deductively code the interviews. HCPs' perspectives were coded into a four-part sequence following CIMO logic: the self-reported use of supportive conversation techniques or tools pre-intervention (Context), the intervention elements (Intervention) that evoked certain mechanisms (Mechanisms), resulting in the self-reported use of supportive conversation techniques and tools post-intervention (Outcomes). The Capabilities Opportunities Motivation-Behaviour (COM-B) model was used to fill in the Mechanisms component. OUTCOMES & RESULTS: Three themes were identified to describe the mechanisms of change that led to an increase in the use of supportive conversation techniques and tools. According to HCPs, (i) information, videos, e-learning modules, role-play, feedback during training and coaching on the job increased their psychological capabilities; (ii) information and role-play increased their automatic motivations; and (iii) information, videos and role-play increased their reflective motivations. Remaining findings show HCPs' perspectives on various barriers to use supportive conversation techniques and tools. CONCLUSIONS & IMPLICATIONS: HCPs in this study identified elements in our CPT intervention that positively influenced their behaviour change. Of these, role-play and coaching on the job were particularly important. HCPs suggested this last element should be better implemented. Therefore, healthcare settings wishing to enhance HCPs' communication skills should first consider enhancing HCPs' opportunities for experiential learning. Second, healthcare settings should determine which HCPs are suitable to have a role as implementation support practitioners, to support their colleagues in the use of supportive conversation techniques and tools. WHAT THIS PAPER ADDS: What is already known on this subject? Several communication partner training (CPT) interventions for healthcare professionals (HCPs) have been developed and used to support HCPs to interact successfully with people with aphasia. To date, there is limited evidence of the mechanisms of change that explain exactly what changes in HCPs' behaviour after CPT and why these changes take place. What this paper adds to existing knowledge Evaluating our CPT intervention by identifying mechanisms of change from the perspectives of HCPs provided us with: (i) a better understanding of the elements that should be included in CPT interventions in different contexts; and (ii) an understanding of the important remaining barriers identified by HCPs to use supportive conversation techniques, even after CPT is implemented. What are the potential or actual clinical implications of this work? This study shows the different intervention elements in our CPT intervention that improve HCPs' capabilities, motivations or opportunities to use supportive conversation techniques and tools. Essential ingredients of CPT according to HCPs in this study were role-play and coaching on the job by an expert and were linked to an increase in HCPs' motivations or beliefs about self-competency. Healthcare settings wishing to enhance HCPs' communication skills should therefore consider appointing implementation support practitioners to coach and support HCPs, and facilitate these practitioners to fulfil this role.

Professionals' motivation to support parental self-management regarding children with physical disability in Dutch rehabilitation services: 'Please mind your gap'.

BACKGROUND: Professionals in child healthcare increasingly endorse the support of self-management in paediatric rehabilitation services for children with physical disability. Less understood though are their views regarding the role of the children's parents, as well as their own role in supporting parents. This study aimed to investigate the motivation of rehabilitation professionals to support self-management of parents regarding their child with physical disability, professionals' beliefs about parental self-management, and the perceptions underlying their motivation. METHODS: A mixed-methods strategy was followed using a survey among rehabilitation professionals (n = 175) and consecutive semi-structured interviews (n = 16). Associations between autonomous (intrinsic) versus controlled (extrinsic) motivation and beliefs on parental self-management were tested. For deeper understanding of their motivation, directed content analysis was used to address key themes in the qualitative data extracts. RESULTS: Professionals reported autonomous motivation for parental self-management support more often than controlled motivation (t[174] = 29.95, p < .001). Autonomous motivation was associated with the beliefs about the importance of parental self-management (r = .29, p < .001). Approximately 90% of the professionals believed that parents should have an active role, though less than 10% considered it important that parents also are independent actors and initiative takers in the rehabilitation process. Interviews revealed that individual professionals struggled with striking a balance between keeping control and 'giving away responsibility' to parents. A 'professional-like' attitude was expected of parents with 'involvement' and 'commitment' as essential preconditions. Furthermore, professionals expressed the need for additional coaching skills to support parental self-management. CONCLUSION: Professionals were predominantly autonomously motivated to support self-management of parents. However, the dilemmas in giving or taking responsibilities within the partnership with parents may limit their effectiveness in empowering parents. Reflection on the potential gaps between professionals' motivation, beliefs and actual behaviour might be crucial to support parental self-management.

Autonomy in participation in cerebral palsy from childhood to adulthood.

AIM: To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. METHOD: Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12-34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (p<0.05). RESULTS: In most domains, over 90% of participants (n=189, 400 observations, 80% in GMFCS levels I and II) reached autonomy in participation in their late twenties, except for intimate/sexual relationships. Those in GMFCS levels III to V compared to those in GMFCS levels I and II had less favourable development of autonomy in the transportation, intimate relationships, employment, and housing domains, and more favourable development in the finances domain. Compared to references, fewer individuals with CP were autonomous in participation. INTERPRETATION: This knowledge of autonomy may guide the expectations of young people with CP and their caregivers. Furthermore, rehabilitation professionals should address autonomy development in intimate relationships, employment, and housing, especially in individuals with lower gross motor function. WHAT THIS PAPER ADDS: Individuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains. Regarding intimate relationships, they continued to have less experience compared to age-matched references. Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V.

AUTONOMÍA EN LA PARTICIPACIÓN EN LA PARÁLISIS CEREBRAL DESDE LA INFANCIA A LA EDAD ADULTA: OBJETIVO: Determinar el desarrollo a largo plazo de la autonomía en la participación de individuos con parálisis cerebral (PC) sin discapacidad intelectual. MÉTODO: Individuos con PC (n=189, 117 varones, 72 mujeres; edad media [DE] 21 años y 11 meses [4 años y 11meses], rango 12-34 años); fueron evaluados de forma transversal (46%) o hasta cuatro veces (54%), entre las edades comprendidas entre los 12 y los 34 años. La autonomía en la participación fue clasificada usando la fase 3 del perfil de transición de Rotterdam (Rotterdam Transition Profile). Se utilizó un modelo de regresión logístico generalizado estimando la ecuación para analizar la autonomía en 6 dominios (variables independientes: edad, nivel del Sistema de Clasificación de la Función Motora Gruesa, [GMFCS], y la interacción entre la edad y el nivel GMFCS). Las proporciones de la autonomía se compararon con las referencias mediante pruebas binomiales (p<0,05). RESULTADOS: En la mayoría de los dominios, más del 90% de los participantes (n=189.400 observaciones, 80% en los niveles I y II de la GMFCS) alcanzaron la autonomía en la participación bien entrados los 20 años, excepto para las relaciones íntimas/sexuales. Aquellos en los niveles III y V de la GMFCS en comparación con los niveles I y II de la GMFCS tuvieron un desarrollo de la autonomía menos favorable en el transporte, relaciones íntimas, empleo y en el dominio de la vivienda, y un desarrollo más favorable en el dominio de las finanzas. En comparación con las referencias, menos individuos con PC fueron autónomos en la participación. INTERPRETACIÓN: Este conocimiento de la autonomía puede guiar las expectativas de los jóvenes con PC y de sus cuidadores. Además, los profesionales de la rehabilitación deberían abordar el desarrollo de la autonomía en las relaciones íntimas, el empleo y la vivienda, especialmente en aquellos individuos con una función motora gruesa más baja.

AUTONOMIA NA PARTICIPAÇÃO EM PARALISIA CEREBRAL DA INFÂNCIA À VIDA ADULTA: OBJETIVO: Determinar o desenvolvimento em longo prazo da autonomia na participação de indivíduos com paralisia cerebral (PC) sem deficiência intelectual. MÉTODO: Indivíduos com PC (n=189, 117 do sexo masculino, 72 do sexo feminino; média de idade [DP] 21a 11m [4a 11m], variação 12-34a); foram avaliados transversalmente (46%) ou até quatro vezes (54%), entre as idades de 12 e 34 anos. A autonomia na participação foi classificada usando a fase 3 do Perfil de Transição de Rotterdam. Um modelo de regressão logística com generalizada com equações estimadas foi usado para analisar a autonomia em seis domínios (variáveis independentes: idade, Nível segundo o Sistema de Classificação da Função Motora Grossa [GMFCS], e interação entre idade e nível GMFCS). As proporções de autonomia foram comparadas com as referências usando testes binomiais (p<0,05). RESULTADOS: Na maior parte dos domínios, cerca de 90% dos participantes (n=189.400 observações, 80% nos níveis GMFCS I e II) atingiram autonomia na participação no final da terceira década de vida, exceto para relações íntimas/sexuais. Aqueles nos níveis GMFCS III a V comparados com os níveis I e II tiveram desenvolvimento menos favorável nos domínios da autonomia no transporte, relações íntimas, emprego, e domicílio, e mais desenvolvimento mais favorável no domínio das finanças. Em comparação com as referências, menos indivíduos com PC foram autônomos na participação. INTERPRETAÇÃO: Este conhecimento sobre a autonomia pode guiar as expectativas de jovens com PC e seus cuidadores. Além disso, profissionais da reabilitação devem abordar o desenvolvimento da autonomia nas relações íntimas, emprego e domicílio, especialmente nos indivíduos com menor função motora grossa.

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties.

AIM: To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. METHOD: Five databases were searched. Instruments that quantified 'attendance' and/or 'involvement' aspects of participation according to the family of participation-related constructs were selected. Data on measurement properties were extracted and methodological quality of the studies assessed. RESULTS: Thirty-seven instruments were used to assess participation in children with ABI or CP. Of those, 12 measured attendance and/or involvement. The reliability, validity, and responsiveness of eight of these instruments were examined in 14 studies with children with ABI or CP. Sufficient measurement properties were reported for most of the measures, but no instrument had been assessed on all relevant properties. Moreover, most psychometric studies have marked methodological limitations. INTERPRETATION: Instruments to assess participation of children with ABI or CP should be selected carefully, as many available measures do not align with attendance and/or involvement. Evidence for measurement properties is limited, mainly caused by low methodological study quality. Future studies should follow recommended methodological guidelines. WHAT THIS PAPER ADDS: Twelve instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) aligned with attendance/involvement. Seven instruments have some psychometric evidence supporting their use with children with CP. For children with ABI, only the Child and Adolescent Scale of Participation has shown preliminary evidence of measurement properties.

Development curves of communication and social interaction in individuals with cerebral palsy.

AIM: To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP). METHOD: This Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow-up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age90 ) using nonlinear mixed-effects modeling. RESULTS: One-hundred individuals without intellectual disability were aged 21 to 34 years at follow-up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty-one individuals with intellectual disability were between 21 and 27 years at follow-up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large. INTERPRETATION: Individuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development. WHAT THIS PAPER ADDS: Communication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals. Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation.

CURVAS DE DESARROLLO DE COMUNICACIÓN E INTERACCIÓN SOCIAL EN NIÑOS CON PARÁLISIS CEREBRAL: OBJETIVO: Determinar las curvas de desarrollo de la comunicación y la interacción social desde la infancia hasta la edad adulta para las personas con parálisis cerebral (PC). MÉTODO: Esta Investigación de Rehabilitación Pediátrica en el Estudio de los Países Bajos (PERRIN)-DECADE evaluó longitudinalmente 421 individuos con PC, de 1 a 20 años en el inicio, después de 13 años (n=121 en el seguimiento). La comunicación y las interacciones sociales se evaluaron utilizando la Escala de comportamiento adaptativo de Vineland. Estimamos el límite promedio de rendimiento máximo (nivel) y la edad a la que se alcanzó el 90% del límite (edad90 ) utilizando un modelo no lineal de efectos mixtos. RESULTADOS: Cien individuos sin discapacidad intelectual tenían entre 21 y 34 años en el seguimiento (39 mujeres, 61 varones; edad media [DS] 28 y 5 meses [3 años y 11meses]). Los límites de las personas sin discapacidad intelectual, independientemente del nivel del Sistema de Clasificación de la Función Motora Gruesa (GMFCS), se acercaron a la puntuación máxima y fueron significativamente superiores a los de personas con discapacidad intelectual. Edad 90s entre 3 y 4 años para la comunicación receptiva, 6 y 7 años para la comunicación expresiva y las interrelaciones, 12 y 16 años para la comunicación escrita, 13 y 16 años por juego y ocio, y 14 y 16 años por sobrellevarlo. Veintiún individuos con discapacidad intelectual tenían entre 21 y 27 años en seguimiento (8 mujeres, 13 hombres; edad media [DS] 24 años y 7 meses [1 año y 8 meses]). Las personas con discapacidad intelectual en el nivel V de GMFCS mostraron el desarrollo menos favorable, pero la variación entre las personas con discapacidad intelectual fue grande. INTERPRETACIÓN: Las personas con PC sin discapacidad intelectual muestran curvas de desarrollo de comunicación e interacciones sociales similares a las personas con desarrollo típico, no considerando su nivel de función motora. Las personas con PC y discapacidad intelectual alcanzan niveles de rendimiento más bajos y varían en gran medida en el desarrollo individual.

CURVAS DE DESENVOLVIMENTO DA COMUNICAÇÃO E INTERAÇÃO SOCIAL EM CRIANÇAS COM PARALISIA CEREBRAL: OBJETIVO: Determinar as curvas de desenvolvimento e interação social da infância para a adolescência para indivíduos com paralisia cerebral (PC). MÉTODO: Este estudo Europeu de Reabilitação Pediátrica na Holanda (PERRIN)-DECADE avaliou longitudinalmente 421 indivíduos com PC, com idades de 1 a 20 anos na linha de base, após 13 anos, (n=121 no acompanhamento). A comunicação e interação social foram avaliadas usando as Escalas Vineland de Compartamento Adaptativo. Estimamos o limite máximo de desempenho médio (nível) e idade em que 90% do limite foi atingido (idade90 ) usando modelos não-lineares de efeitos mistos. RESULTADOS: Cem indivíduos sem deficiência intelectual com idades entre 21 e 34 anos no acompanhamento (39 do sexo feminino, 61 do sexo masculino; média de idade [DP] 28a 5m [3a 11m]). Os limites de indivíuduos sem deficiência intelectual, independente do nível do Sistema de Classificação da Função Motora Grossa (GMFCS), se aproximou da pontuação maxima e foram significativamente maiores do que os valores de indivíduos com deficiência intelectual. A idade 90s variou entre 3 e 4 anos para comunicação receptiva, 6 e 7 anos para comunicação expressiva e intercomunicações, 12 e 16 anos para comunicação escrita, 12 e 16 years para brincadeiras e lazer, e 14 e 16 anos para adaptabilidade. Vinte e um indivíduos com deficiência intelectual estavam entre 21 e 27 anos no acompanhamento (8 do sexo feminino, 13 do sexo masculino; média de idade [DP] 24a 7m [1a 8m]). Indivíduos com deficiência intelectual no nível GMFCS V mostraram o desenvolvimento menos favorável, mas a variação entre indivíduos com deficiência intelectual foi grande. INTERPRETAÇÃO: Indivíduos com PC com e sem deficiência intelectual mostram curvas desenvolvimentais de comunicação e interação social similares a indivíduos com desempenho típico, independente do nível de função motora. Aqueles com deficiência intelectual tiveram menores níveis de performance e variaram amplamente no desenvolvimento individual.

Participation Restrictions and Satisfaction With Participation in Partners of Patients With Stroke.

OBJECTIVE: To investigate participation restrictions and satisfaction with participation in partners of patients with stroke. DESIGN: Cross-sectional study. SETTING: Five rehabilitation centers and 3 hospitals in The Netherlands. PARTICIPANTS: A consecutive sample of 54 partners of patients with stroke. The patients were participating in a multicenter randomized controlled trial. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participation restrictions as a result of the patient's stroke and satisfaction with participation measured with the Utrecht Scale for Evaluation of Rehabilitation-Participation. RESULTS: The number of participation restrictions differed between partners of patients with stroke. The median number of participation restrictions experienced was 2 for the 11 activities assessed. Most participation restrictions were reported regarding paid work, unpaid work, or education, relationship with partner (ie, patient), and going out. Partners were least satisfied regarding going out, sports or other physical exercise, and day trips and other outdoor activities. The participation restrictions and satisfaction with participation were significantly correlated (ρ=0.65; P<.001), although this relation between participation restrictions and satisfaction with participation differed for the various activities. Differences between satisfied partners with participation restrictions and dissatisfied partners concerned anxiety (U=93.0; P=.026), depression (U=81.5, P=.010), and the number of restrictions experienced (U=50.0; P<.001). CONCLUSIONS: There is great variety in restrictions experienced by partners regarding different activities and in their satisfaction with these activities. Specific assessment is therefore important when supporting partners of patients with stroke.

Prediction of Psychological Distress Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others.

OBJECTIVES: To identify intra- and interpersonal sociodemographic, injury-related, and psychological variables measured at admission of inpatient rehabilitation that predict psychological distress among dyads of individuals with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others (ie, individuals close to the individual with a disability, mostly family members) 6 months after discharge. Differences in predictors were investigated for persons with SCI or ABI and their significant others and were compared between diagnoses. DESIGN: Prospective longitudinal study. SETTING: Twelve Dutch rehabilitation centers. PARTICIPANTS: Dyads (N=157) consisting of adults with SCI or ABI who were admitted to inpatient rehabilitation and their adult significant others. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Psychological distress (Hospital Anxiety and Depression Scale). RESULTS: Sociodemographic and injury-related variables were not or were only weakly associated with psychological distress among individuals with SCI or ABI and their significant others 6 months after discharge. Bivariately, higher baseline psychological distress, lower scores on adaptive psychological characteristics (combination of self-efficacy, proactive coping, purpose in life, resilience), and higher scores on maladaptive psychological characteristics (combination of passive coping, neuroticism, appraisals of threat and loss) were related to higher psychological distress, as well as crosswise between individuals with SCI or ABI and their significant others, although less strongly. Combined prediction models showed that psychological distress among persons with SCI or ABI was predicted by education level of their significant other, their own baseline psychological distress, and their own maladaptive psychological characteristics (explained variance, 41.9%). Among significant others, only their own baseline psychological distress predicted psychological distress (explained variance, 40.4%). Results were comparable across diagnoses. CONCLUSIONS: Although a dyadic connection was shown, primarily one's own baseline psychological distress and psychological characteristics were important in the prediction of later psychological distress among both individuals with SCI or ABI and their significant others. Screening based on these variables could help to identify persons at risk for psychological distress.

Self-Efficacy Predicts Personal and Family Adjustment Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others: A Dyadic Approach.

OBJECTIVES: To investigate whether the combination of self-efficacy levels of individuals with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others, measured shortly after the start of inpatient rehabilitation, predict their personal and family adjustment 6 months after inpatient discharge. DESIGN: Prospective longitudinal study. SETTING: Twelve Dutch rehabilitation centers. PARTICIPANTS: Volunteer sample consisting of dyads (N=157) of adults with SCI or ABI who were admitted to inpatient rehabilitation and their adult significant others. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Self-efficacy (General Competence Scale) and personal and family adjustment (Hospital Anxiety and Depression Scale and McMaster Family Assessment Device General Functioning). RESULTS: In 20 dyads, both individuals with SCI or ABI and their significant others showed low self-efficacy at baseline. In 67 dyads, both showed high self-efficacy. In the low-self-efficacy dyads, 61% of the individuals with SCI or ABI and 50% of the significant others showed symptoms of anxiety 6 months after discharge, vs 23% and 30%, respectively, in the high-self-efficacy dyads. In the low-self-efficacy dyads, 56% of individuals with SCI or ABI and 50% of the significant others reported symptoms of depression, vs 20% and 27%, respectively, in the high-self-efficacy dyads. Problematic family functioning was reported by 53% of the individuals with SCI or ABI and 42% of the significant others in the low-self-efficacy dyads, vs 4% and 12%, respectively, in the high-self-efficacy dyads. Multivariate analysis of variance analyses showed that the combination of levels of self-efficacy of individuals with SCI or ABI and their significant others at the start of inpatient rehabilitation predict personal (V=0.12; F6,302=2.8; P=.010) and family adjustment (V=0.19; F6,252=4.3; P<.001) 6 months after discharge. CONCLUSIONS: Low-self-efficacy dyads appear to be more at risk for personal and family adjustment problems after discharge. Screening for self-efficacy may help healthcare professionals to identify and support families at risk for long-term adjustment problems.

Understanding the essential components and experiences of youth with autism spectrum disorders in peer mentorship programmes during the transition to adulthood: A qualitative meta-ethnography.

Youth with an autism spectrum disorder (ASD) often require additional supports during the period of transition to from high school to post-secondary education or career paths. Peer mentorship (PM) programmes create opportunities to support youth with ASD in identifying their personal, academic and career goals after graduating from high school; however, there is limited insight about the components of these programmes that are valued by both participants and peer mentors and that are perceived to contribute to the overall success of a programme in achieving their goals. Our objective was to identify, describe and synthesize the components of PM programmes valued by youth with ASD and their peer mentors, as well as to document their experiences in these transitional support services. A meta-ethnography was conducted to synthesize qualitative and mixed methods studies of PM programmes for youth with ASD. A systematic search of seven databases yielded 142 nonduplicate articles. Data analysis and synthesis involved (1) extraction of raw data; (2) extraction of study authors' interpretations, followed by inductive coding; (3) synthesis of key themes and (4) schematic diagram development to illustrate the relationship of themes. Ten studies of PM programmes from Canada (2), United States (4), Australia (3) and United Kingdom (1) were included. Extracted data reflected experiences of 131 mentees and 82 mentors. The essential programme components identified were (1) mentorship, (2) skill building, (3) peer group and (4) facilitating transition. PM characterized by clear communication and connection between mentors and mentees was valuable to the success of the programme. Peer mentors played an essential role to facilitate the positive experiences that mentees had with programme components, including interactions with peer groups. Successful PM programmes created a safe environment for mentees to practice skills and helped mentees gain confidence to expand their roles to take leadership in their learning.