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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. [ABSTRACT FROM AUTHOR]

Descriptive title: Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parents' experience of caring for a child with a rare disease is limited. This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research. Background: Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parent's experience of caring for a child with a rare disease is limited. Methods: An interpretive phenomenological approach was applied in this inquiry. Fifteen parents of children with rare diseases participated in semistructured interviews. Results: Interpretive thematic analysis revealed that due to the rarity of the disease and an overall lack of knowledge of the disease, there is an increase in the burden on the family in relation to "rarity" in addition to "disability." Four insights were also revealed: (a) Parents often know more about the disease then Health Care providers, and this leads to entanglements in communication and collaboration as experts and parents; (b) there is lack of coordination of care between providers and services caring for children with rare diseases; (c) there is a gap in accessibility to government supports; and (d) due to fragmented care, parents must fill the aforementioned gaps by juggling multiple roles including that of advocate, case manager, and medical navigator. Conclusion: This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research. [ABSTRACT FROM AUTHOR]

Background: University researchers worked with 13 children's service provider agencies to conduct a programme evaluation of parents' perceptions of the family‐centredness of service spanning 3 years (January 2015 to May 2018). Parents of Ontario children with autism spectrum disorder (ASD) receiving applied behaviour analysis (ABA) programming reported outcomes of their experience of family‐centred services (FCS) using the 20‐item Measure of Processes of Care (MPOC‐20). The purpose of this paper is to report the outcomes of the quality assurance evaluation of FCS as measured by MPOC‐20 among parents of children with ASD receiving ABA services. Methods: A total of 11 490 surveys (from 21 571 potential respondents [53.3%]) were completed. Means and proportions were used to describe the demographics, service utilization and MPOC‐20 scores with its 7‐point Likert scales, ranging from 1 (lowest) to 7 (highest). Results: The overall provincial MPOC scores were consistent over the 3 years, ranging from very good to excellent, with Respectful and Supportive Care (n = 11 348, x¯ = 6.27, SD = 0.83) reporting the highest scale score and Providing General Information (n = 10 485, x¯ = 5.51, SD = 1.43) the lowest. Conclusion: Given the consistently high MPOC scores found in this and other programme evaluations, it is believed that health service providers have caught up to the FCS quality standards proposed 30 years ago. For this reason, the developers of MPOC are now planning a revision of the measure to address its ceiling effects and to integrate contemporary perspectives on family‐centred practice for children and their families. [ABSTRACT FROM AUTHOR]

Background: Families and professionals caring for a child without a definitive diagnosis face unique challenges, particularly in relation to managing uncertainty; access to healthcare; obtaining relevant information and support; and trying to navigate a healthcare system that is often fragmented. We used co‐design to inform the establishment of the first UK specialist nursing post dedicated to working with children with undiagnosed genetic conditions and their families. Objectives: (1) To understand what families and hospital staff want from the service; (2) To understand how the post should be operationalized in practice; (3) To develop the job description and person specification for the postholder. Methods: A range of approaches were used to collect data: interviews (nine parents and 10 hospital staff); a focus group (three parents); a creative workshop (six patients and siblings); and an online forum (81 parents). Data were analyzed using framework and thematic analysis. The strands of data were brought together and reviewed as a whole to formulate the postholder's job description and person specification. Results: Stakeholders identified nine key elements to the role which were incorporated into the job description: practical support; point of contact; community liaison; signposting to other services; care coordination; supporting families; advocacy; raising awareness; and emotional support. Conclusions: Highlighted in this paper are the practical aspects of engaging and involving all relevant stakeholders in the process of co‐designing a new post and subsequent staff recruitment. The flexibility employed in the setting and methods of data collection were instrumental in ensuring that the views of a diverse range of participants were ascertained. A major consideration is the resources required to undertake co‐design, in terms of time and finances. We believe that the resources required for the co‐design are offset by the advantages of having the right person in the right post, doing the right job. [ABSTRACT FROM AUTHOR]

Aim The children's health state preferences learnt from animation (CHILDSPLA) project developed an interactive application presented on a touch screen device using an animated character to collect information from children about their health. Background The underlying hypothesis was that health information could be directly collected from children as young as 4 years old by the use of animated characters. This paper describes in detail how children were involved in the development of the application, and recounts both the challenges and benefits of that process. A child psychologist and an animation filmmaker worked closely with children to design a character and to animate it to represent different health states. Children were recruited from a local primary school (n = 38) and a paediatric specialist hospital (n = 36). Diverse interactive activities were organized to help children give feedback and guide the design process. The activities for each session were adjusted to the children's needs, based on the experience of previous sessions. Results The character and the animations were modified according to the feedback provided by the children. Conclusions Developing the CHILDSPLA app in collaboration with children was a worthwhile and enriching experience, despite the required iteration and extension of the design process, as it enabled us to adjust the tool to the children's needs. [ABSTRACT FROM AUTHOR]

Background In Australia, Aboriginal children experience significantly poorer health outcomes compared with non-Aboriginal children. Health policies aimed at improving Aboriginal health outcomes include interventions in the early childhood period. There is a need for government health services to work in partnership with Aboriginal people and other services to achieve the highest level of health possible for Aboriginal children, who often require a range of services to meet complex needs. Aim This paper describes the views of service providers on how paediatric outreach services work in partnership with other services, Aboriginal families and the community and how those partnerships could be improved to maximize health outcomes for children. Methods In-depth, semi-structured interviews and focus groups were conducted with managers and service providers over a 6-week period in 2010. The views and suggestions of participants were documented and a thematic analysis was undertaken. Results and Discussion Analysis of two focus groups with seven service providers and five individual interviews with service managers resulted in the identification of four themes: (i) using informal and formal ways of working; (ii) cultivating effective relationships; (iii) demonstrating cultural sensitivity; and (iv) forging strong leadership. Use of formal and informal approaches facilitated effective relationships between service providers and Aboriginal families and communities. Partnerships with the community were founded on a culturally appropriate model of care that recognized a holistic approach to health and wellness. Leadership emerged as an essential component of effective partnerships, cultivating the ethos of the workplace and creating an environment where collaboration is supported. Conclusion Culturally appropriate child health services, which utilize effective relationships and employ a range of informal and formal collaboration with other services and community members, are well positioned to implement health policy and improve access to services for Aboriginal children with better health outcomes as a result. [ABSTRACT FROM AUTHOR]

Background A range of voluntary sector organizations are involved in the delivery of services to children, particularly within the Early Year's sector and children's centres. Peers Early Education Partnership (PEEP) Early Explorers project is one example of the way in which explicit partnerships are being forged across statutory and voluntary sectors with the aim of improving outcomes for children and families. This paper reports an exploration of stakeholder views and experiences of two Early Explorer clinics located in areas of high deprivation. Methods Semi-structured interviews were conducted with a purposive sample of stakeholders ( n= 25) from children's centres, PEEP, the health visiting service and service users. Data were fully transcribed and analysed using a thematic approach. Results The data suggest that the two key groups of stakeholders providing Early Explorer clinics (i.e. health visitors and PEEP practitioners) had quite different objectives in terms of their early goals for the clinic, but that despite these differences good progress was achieved in terms of working together effectively. All stakeholders including service users referred to the presence of PEEP as having improved the quality of the clinic environment, and participating mothers identified a wide range of benefits from the enhanced service. However, somewhat restricted views about the role of practitioners within the clinics were identified by users, and the findings suggest that although the early goals for the clinic had been exceeded, these may have been limited in terms of true 'partnership' working. Conclusions Early Explorer clinics appeared to have enhanced the service provided within traditional child health clinics and to have provided practitioners with access to hard-to-reach families and parents with access to services that are consistent with the broader policy aims of improving parent-infant interaction. However, questions remain as to whether the benefit of 'partnership' working was fully realized. [ABSTRACT FROM AUTHOR]

Background: Family‐centred practice (FCP) has become a recommended practice for early intervention services for children with disabilities in many countries. However, its feasibility in Chinese context has been unclear. This study is the first to explore the perceptions of early intervention service practitioners about the implementation of FCP in mainland China. Methods: Focus groups were employed to collect data from 37 early intervention practitioners who attended a workshop about FCP in Wuhan, China and two officers from the provincial disabled persons' federation. The data were analysed thematically. Results: Four themes were identified: (a) family‐centred early intervention is possible, (b) traditional concepts are not friendly towards FCP, (c) parents do not collaborate and (d) financing and personal resources are not sufficient to implement FCP. Chinese practitioners agreed with the philosophies of FCP; however, there was concern that widespread implementation may meet conceptual and practical challenges. Conclusions: The results highlighted practitioners were optimistic and keen for FCP implementation in the Chinese context, but to do so across China may still be some way in the future. [ABSTRACT FROM AUTHOR]

Aim: This article aims to explore the important theme of uncertainty and how this is experienced by parents of children with long‐term disability or illness. It also aims to consider how health professionals might offer support to parents to manage their uncertainty without taking away their hope. Background: Before taking up their role in a collaborative partnership with health professionals, parents first need to 'get used' to being a parent of a child with long‐term disability. During this time, parents experience considerable uncertainty and employ different strategies to try to manage this. Methods: The study was guided by a constructivist grounded theory methodology. This involved an iterative process of repeated cycles of data collection and analysis, which consisted of 12 semi‐structured, in‐depth interviews with 14 parents of children accessing paediatric services within a single National Health Service (NHS) Trust. Results The overarching theme of 'managing uncertainty' is presented with its constituent core categories/subthemes of 'minimizing concerns', 'getting an answer' and 'prioritizing the diagnosis'. Conclusions: This article presents and discusses a new understanding of how parents might be supported to manage the uncertainty associated with having a child with a long‐term disability. It is suggested that support needs to move beyond the provision of accurate and timely information, to include measures/strategies that help parents to accept and make sense of their situation. Re‐centring the child and reducing focus on diagnosis may help to allow space for continued hope. [ABSTRACT FROM AUTHOR]

Background: Educators and health professionals support the learning and participation of diverse children in school environments. Tiered approaches to service delivery may assist these efforts through consideration of universal supports that are useful to all children, targeted supports for some children and individualized supports for the smallest number of children. This study explored how an interprofessional team worked with educators to develop and implement tiered services in two school communities where many families experience economic and social disadvantages. Methods: Using a participatory action research approach and qualitative case study methods, the research and stakeholder teams jointly designed and conducted this study in two schools during the 2017–2018 school year. Data collected included weekly logs written by the interprofessional team members and 16 interviews conducted with team members, parents, educators and administrators. Results: The team provided a variety of services to individual students, groups, whole classes and the school community. Collaboration and communication were needed to define roles and expectations and to plan and share student information. Reported benefits included timely service, capacity building and student goal achievement. The main barriers were related to service fragmentation, time and workload. Conclusions: Recommendations included clearer direction about expectations and improved coordination within the systems that offer services. Further research should include exploration of comparative cases with varying contexts, the inclusion of child perspectives and direct observation. [ABSTRACT FROM AUTHOR]

Children with intellectual disability are susceptible to poor experiences of care and treatment outcomes, and this may compound existing health inequities. Evidence to date indicates three priority areas that must be addressed in order to reduce these inequities in the safety and quality of care for children with intellectual disability. Firstly, we need reliable methods to identify children with intellectual disability so that healthcare organizations understand their needs. Secondly, we need to develop quality metrics that can assess care quality and unwarranted care variation for children with intellectual disability in hospital. Finally, for a comprehensive understanding of the safety and quality of care for these children, and how to improve, it is critical that healthcare organizations partner with parents/carers and enable children with intellectual disability to voice their experiences of care. Children with intellectual disability have higher healthcare utilization than their peers; yet, their voice is rarely sought to optimize the safety and quality of their healthcare experience. Patient experience narratives enhance our understanding of the genesis of adverse events. By addressing these priorities, children with intellectual disability will be identified, and health services will measure and understand the problematic and beneficial variations in care delivery and can then effectively partner with children and their parents/carers to address the inequities in care quality and create safer healthcare. [ABSTRACT FROM AUTHOR]

Background: Family‐centred care (FCC) is a model for rehabilitation practice that focuses on collaborative partnerships between providers and clients (i.e., children and their caregivers). FCC is a best‐practice standard and is expected to yield better outcomes for children and greater caregiver satisfaction with rehabilitation services. A commonly cited barrier to implementing FCC is perceptions about caregiver capability to contribute to designing an initial plan of care, due to lack of skill and/or interest. Objectives: The aim of this study is to address FCC barriers through three objectives: (a) report the proportion of caregivers that created multiple care plans using PEM+, an electronic health tool, (b) assess the proportion of caregivers that created complete and participation‐focused care plan(s) and that exceeded criteria of a complete plan, and (c) describe characteristics of caregivers that did not create a complete care plan. Methods: Study objectives were addressed via secondary analyses of a subset of data from the PEM + pilot trial. Participants were caregivers (N = 18) of children with developmental disabilities (aged 0–5 years) receiving rehabilitation services in an early childhood programme. A deductive analytic approach was used to code care plan content to criteria and to determine proportion of caregivers with a complete and participation‐focused care plan and those that exceeded the criteria. Results: Multiple care plans were created by 72% of the caregivers, 83% caregivers created at least one care plan that was complete and participation‐focused per criteria, and 83% exceeded the criteria. Conclusion: The high occurrence of caregivers who developed multiple care plans and who developed high‐quality care plans, in their completeness and participation‐focused features, suggests that caregivers are interested and capable of participating in a collaborative goal setting process when using PEM+. This indicates that FCC is feasible to implement in clinical workflow with the use of an electronic health tool, which may better facilitate such care. PEM+ warrants further efficacy testing prior to implementation. [ABSTRACT FROM AUTHOR]

Background: Inclusive educational environments can have a positive effect on the general health and well‐being of children with disabilities. However, their level of academic success and participation remains limited. Considering scarce resources and high needs, identifying efficient methods for providing interdisciplinary services is critical. This scoping review, therefore, aims to (a) synthesize current evidence about principles for organizing and delivering interdisciplinary school‐based support services for students with disabilities and (b) ascertain useful strategies for implementation of principles in the school setting. Methods: Scholarly and grey literature in rehabilitation and education were reviewed collaboratively with school‐based stakeholders. A search of five databases identified 13,141 references and resulted in 56 relevant articles published from 1998 to 2017. Information (e.g., principles to organize services and strategies for implementation) was extracted, and thematic analysis was used to summarize findings. Results: Within the documents retained, 65% were scientific and 35% were grey. Services primarily targeted students with behavioral issues, followed by those with cognitive and learning disabilities with a focus on improving social–emotional functioning and academic performance. Thematic analysis revealed 10 common principles to guide service organization (e.g., collaborative interventions and support for teachers) and seven implementation strategies (e.g., training and coordination) for employing these principles. Conclusions: Findings can guide rehabilitation professionals, educators, and policy makers in restructuring well‐coordinated collaborative services involving training and capacity‐building of school‐based service providers. Such knowledge can contribute to the improved provision of care and, consequently, promote children's school participation and inclusion. [ABSTRACT FROM AUTHOR]

Abstract: Background: Setting goals for treatment is often the core of the rehabilitation process. The quality of the set goals has however rarely been evaluated. The aims of this study were therefore to assess the quality of goals set in clinical practice of pediatric rehabilitation using SMART criteria (Specific, Measurable, Achievable, Relevant, and Timed) and to assess if the goals were considered relevant from both a client perspective and expertise perspective. Methods: In a retrospective multicase study, a total of 161 goals from 42 children with disabilities (cerebral palsy, n = 22; Down syndrome, n = 16; and developmental disability, n = 4) were assessed. The children were 1.5–5.5 years and had previously participated in goal‐directed, activity‐focused therapy at four pediatric rehabilitation centers. Collaborative goal setting had been used to define the desired treatment outcome. The quality of the goals was assessed using defined SMART criteria. Results: Specific: All goals could be reliably linked to International Classification of Functioning, Disability and Health—Children and Youth version chapters within the Activity/Participation domain. Measurable: A total of 75% of the goals were rated as having a well‐defined scaling; in 20%, the scaling was less clear, and in 5%, a scaling could not be determined. Achievable: A total of 80% of the goals were attained. Relevant: All goals were set in collaboration with the family and could therefore be considered relevant from a client perspective. Relevancy judged from a professional perspective was strengthened by the fact that age, baseline status, and diagnosis had an influence on the choice of goals. Timed: All goals were set within a specific time frame. Conclusions: The goals set in clinical practice showed high quality with respect to the SMART criteria. The most difficult part was the construction of the goal attainment scale. The goals settled in clinical practice were considered relevant from both a client perspective and expertise perspective. [ABSTRACT FROM AUTHOR]

Background Recent evidence suggests that fostering strategies to enable youth with chronic health conditions to work towards gradual self-management of their health is key in successful transition to adult healthcare. To date, there is limited research on self-management promotion for youth. The purpose of this study is to explore self-management from the perspectives of youth, parents and healthcare providers in transition to adult healthcare. Methods Part of a larger longitudinal transition (TRACE-2009-2013) study, interpretive phenomenology was used to explore the meaning of the lived experiences and perceptions of youth, parents, and healthcare providers about transition to adult healthcare. Purposeful sampling was utilized to select youth with a range of chronic health conditions from the TRACE cohort (spanning 20 diagnoses including developmental disabilities and chronic conditions), their parents and healthcare providers. Results The emerging three themes were: increasing independence of youth; parents as safety nets and healthcare providers as enablers and collaborators. The findings indicate that the experiences of transitioning youth, parents and service providers are interconnected and interdependent. Conclusions Results support a dynamic and developmentally appropriate approach when working with transitioning youth and parents in practice. As youth depend on parents and healthcare providers for support in taking charge of their own health, parents and healthcare providers must work together to enable youth for self-management. At a policy level, adequate funding, institutional support and accreditation incentives are recommended to allow for designated time for healthcare providers to foster self-management skills in transitioning youth and parents. [ABSTRACT FROM AUTHOR]

Background In the UK and internationally, there have been increasing calls for interagency collaboration across mental health services for children and young people. However, it is not clear whether such practices do, indeed, have a positive impact and, if so, what factors facilitate and inhibit collaboration across agencies. Methods Electronic searches were carried out on seven key computerized bibliographic databases. For inclusion in the review, studies needed to report on close working by two or more services that provided mental health support for children and/or young people and that had some systematic collection of qualitative and/or quantitative data. Outcomes were analysed narratively, and facilitating and inhibiting factors were examined using thematic analysis. Results A final sample of 33 studies was identified from 4136 initial records. Outcomes were mixed, with some findings indicating that interagency collaboration was associated with greater service use and equity of service provision, but other suggesting negative outcomes on service use and quality. However, interagency collaboration was perceived as helpful and important by both service users and professionals, and collaborative initiatives were evaluated positively. The factors most commonly identified as facilitating interagency collaboration were good interagency communication, joint trainings, good understandings across agencies, mutual valuing across agencies, senior management support, protocols on interagency collaboration and a named link person. The most commonly perceived barriers to interagency collaboration were inadequate resourcing, poor interagency communication, lack of valuing across agencies, differing perspectives, poor understandings across agencies and confidentiality issues. Conclusions The results are consistent with findings from previous reviews of interagency collaboration across adult and child services: there were some indications of benefit; and facilitating and inhibiting factors involved working relationships and multi-agency processes, resources and management. The identification of these factors has implications for practitioners, service managers, trainers, commissioners and researchers. [ABSTRACT FROM AUTHOR]

Background Collaboration is a key facilitator of cognitive development in early childhood; this review evaluates which factors mediate the impact of collaborative interactions on cognitive development in children aged 4-7 years. Methods A systematic search strategy identified relevant studies ( n = 21), which assessed the role of ability on the relationship between collaboration and cognitive development. Other factors that interact with ability were also assessed: gender, sociability/friendship, discussion, age, feedback and structure. Results Immediate benefits of collaboration on cognitive development are highlighted for same-age peers. Collaborative interactions are beneficial for tasks measuring visual perception, problem-solving and rule-based thinking, but not for word-reading and spatial perspective-taking. Collaboration is particularly beneficial for lower-ability children when there is an ability asymmetry. High-ability children either regressed or did not benefit when paired with lower-ability participants. Conclusions Overall, the studies included within this review indicate that brief one-off interactions can have a significant, positive effect on short-term cognitive development in children of infant school age. The longer-term advantages of collaboration are still unclear. Implications for practice and future research are discussed. [ABSTRACT FROM AUTHOR]

Background Integrated care has important implications for children with medical complexity ( CMC) who rely on care and service delivery involving multiple providers in different places over time. Most studies describing complex care programmes focus on the effectiveness of care co-ordination rather than the process of system integration. This pilot study explores the implementation process of the Integrated Complex Care Model: a voluntary partnership between acute, rehabilitative and community care aimed at system integration through a key worker model to improve care co-ordination for CMC. Methods This descriptive study used qualitative analyses and syntheses to explore the process of inter-organizational collaboration under 'real-life' circumstances. Multiple methods and sources of data were gathered to support triangulation in understanding of enablers and barriers to model implementation. Forty hours of meeting minutes and administrative databases housing patient records were reviewed. Baseline demographic information was available for 23 families, including child health-related quality of life and healthcare utilization. A subset of 12 parental caregivers and 21 additional key informants participated in individual interviews or focus groups. Findings are presented using King and Meyer's description of system integration and care co-ordination. Results Model enablers included dedication, timing, leadership and electronic care plan use/communication among key workers, families and health providers. Barriers included assumptions about partner organizations, differing organizational structures and client information systems, constrained project resources and limited engagement of primary care. Parents perceived an electronic care plan as a facilitator of timely and effective care for CMC across multiple settings. Conclusions At a systems level, the integrated model fostered collaboration between partner organizations. At a family level, development of inter-organizational management structures and communication platforms; provision of adequate resourcing; and increased engagement of primary care may enable high level organizational integration aimed at improved care co-ordination for CMC. [ABSTRACT FROM AUTHOR]

Purpose In this qualitative study, school-age children between 7 and 11 years, living with a bleeding disorder or other chronic illness, defined how they understand their partnership role in family-centred care (FCC), and recommended FCC strategies. Methods This systematic ethnography had three phases: unstructured interviews explored how children understood FCC partnership roles (phase I); document review provided FCC institutional context (phase II); and validation interviews generated FCC partnership recommendations (phase III). This study took place within the area served by a Western Canadian children's hospital. Interviews were held at the hospital or children's home. In phase I, purposive sampling was used to recruit children receiving outpatient care for a bleeding disorder ( n= 4) or another chronic illness ( n= 4). In phase II, policies and legislation were compared with how children understand their FCC partnership role. In phase III, validation interviews were conducted with children ( n= 3) to confirm domains and generate FCC supporting strategies. Data collection and analysis were based on domain analysis and qualitative ethnographic content analysis. Results Phase I outcomes included seven domains regarding how children understood their role as partners in FCC: my best interests, virtues, talking and listening, being involved, knowing, making decisions and being connected. Phase II outcomes revealed how these domains were represented in institutional contexts. Phase III outcomes confirmed domains and generated key strategies to support children's role as FCC partners through graphic representation of FCC as a treasure map, interactive workshop and online game. Conclusions School-age children, living with a bleeding disorder or other chronic illness, similarly want to learn how to be FCC partners by developing competence as healthcare team members, identifying their own best interests, learning how to communicate with 'grown-ups', clarifying roles and goals, and guided opportunities for decision making. Facilitating school-age children's FCC partnership roles is worthy to explore in youth transition programmes. [ABSTRACT FROM AUTHOR]

The article presents an abstract of the article "Medical-Legal Partnership: Impact on Patients With Sickle Cell Disease" by R. Pettignano, S. B. Caley and L. R. Bliss and presents a brief commentary on the abstract.