Destination unknown: Parents and healthcare professionals' perspectives on transition from paediatric to adult care in <scp>Down</scp> syndrome

Peters, Vincent; Bok, Levinus A.; Beer, Lieke; Rooij, Joyce J. M.; Meijboom, B.R.; Bunt, Jan Erik H.

doi:10.1111/jar.13015

Cited by 6 publications

(3 citation statements)

References 40 publications

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“…In the Netherlands, there is currently no transition protocol available for the transition from pediatric to adult care. This compromises the COC for these young adults, despite previous research on transitional care highlighting the importance of a well-organized transition for other patient groups [ 19 , 20 ]. Therefore, we recommend that future research should focus on the transition from pediatric to adult care and advocate the use of modularity to develop transition guidelines.…”

Section: Discussionmentioning

confidence: 99%

Continuity of care for children with anorexia nervosa in the Netherlands: a modular perspective

Lennips,

Peters,

Meijboom

et al. 2024

Eur J Pediatr

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Care provision for children with anorexia nervosa is provided by outpatient care teams in hospitals, but the way these teams are organized differs per hospital and hampers the continuity of care. The aim of this study is to explore the organization and continuity of care for children with anorexia nervosa in the Netherlands by using a modular perspective.We conducted a qualitative, exploratory case study and took the healthcare provision for children with anorexia nervosa, provided by outpatient care teams, as our case. We conducted nine interviews with healthcare professionals involved in outpatient care teams from six hospitals. A thematic analysis was used to analyze the data.The modular perspective offered insights into the work practices and working methods of outpatient care teams. We were able to identify modules (i.e. the separate consultations with the various professionals), and components (i.e. elements of these consultations). In addition, communication mechanisms (interfaces) were identified to facilitate information flow and coordination among healthcare professionals. Our modular perspective revealed gaps and overlap in outpatient care provision, consequently providing opportunities to deal with unnecessary duplications and blind spots. Conclusion: A modular perspective can be applied to explore the organization of outpatient care provision for children with anorexia nervosa. We specifically highlight gaps and overlap in healthcare provision, which in turn leads to recommendations on how to support the three essential parts of continuity of care: informational continuity, relational continuity, and management continuity. What is Known:• Care provision for children with anorexia nervosa requires a network of health care professionals from different organizations, as a result the organization and provision of care faces challenges. What is New:• Modular care provision sheds light on the complexity and organization of outpatient care provision and supports the three dimensions of continuity of care as experienced by children with anorexia nervosa and their parents/caregivers.

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Section: Discussionmentioning

confidence: 99%

Continuity of care for children with anorexia nervosa in the Netherlands: a modular perspective

Lennips,

Peters,

Meijboom

et al. 2024

Eur J Pediatr

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“…As individuals with DS transition into adulthood, the focus shifts to maintaining health and fostering independence. This transition from pediatric to adult healthcare services is crucial and involves continued health monitoring and support systems to ensure a high quality of life (Bray et al, 2022;Peters et al, 2022).…”

Section: Healthcare Approachesmentioning

confidence: 99%

Empowering Lives: Navigating the Landscape of Down Syndrome Support in Saudi Arabia

Parveen,

Ahmad,

Reshi

2024

Journal of Disability Research

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This study offers an in-depth analysis of Down syndrome (DS) in Saudi Arabia, encompassing healthcare, societal integration, and policy frameworks. It assesses DS prevalence within the Saudi population against global rates and underscores the progress in prenatal diagnostics and screening for early detection. The significance of neonatal care and early intervention programs in the comprehensive development of children with DS is highlighted. The paper explores societal perceptions and efforts to increase public awareness and reduce stigma, with a particular focus on media and educational initiatives. It reviews the educational landscape for individuals with DS, touching on inclusive policies and specialized programs, and evaluates the effectiveness and obstacles of these approaches. The study also compares Saudi policies and legal protections for individuals with DS to international standards, illustrating the country’s advancements toward global norms. It examines support systems, including contributions from nonprofits, community programs, and family services, and concludes with an identification of ongoing challenges and recommendations for future enhancements. This comprehensive overview underlines the importance of a multifaceted approach to supporting individuals with DS in Saudi Arabia, aiming to enhance their quality of life and ensure their full integration into society.

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“…In a national 'Transition to Adulthood' survey of AYAs with Down syndrome, less than 50% reported awareness and comfort in the transition process, and less than 10% of AYAs with Down syndrome aged 18-22 years had completed a transition readiness assessment, portable medical summary or created a written transition plan with their paediatrician [82]. Peters et al [83] reported that not having enough time for preparation, limited information about the adult-oriented care setting and lack of consistency in the transition process were major concerns during HCT. Parents preferred a warm hand-off during a joint office visit with the paediatric and adult provider.…”

Section: Down Syndrome Noonan Syndrome and Silver-russell Syndromementioning

confidence: 99%

Facilitating the transition from paediatric to adult care in endocrinology: a focus on growth disorders

Vakharia

Stanley

2022

Current Opinion in Endocrinology, Diabetes &Amp; Obesity

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Purpose of reviewMany childhood-onset growth disorders (COGDs) require continued care into adulthood, and the time of transition between paediatric and adult providers carries a high risk for interruptions in medical care and consequent worsening of disease management. Recent findingsResearch into best practices for healthcare transition (HCT) describes three distinct stages. Stage 1, transition planning and preparation, begins in the paediatric setting during early adolescence and ensures that the patient has adequate medical knowledge, self-management skills, and readiness for transition. Stage 2, transfer to adult care, occurs with variable timing depending on transition readiness and is best facilitated by warm hand-offs and, when possible, joint visits with the paediatric and adult provider(s) and/ or involvement of a care coordinator. Stage 3, intake and integration into adult care, entails retaining the patient in the adult setting, ideally through the involvement of a multidisciplinary approach. SummaryThis review covers general principles for ensuring smooth transition of adolescents and young adults (AYA) with COGD, disease-specific medical considerations for paediatric and adult endocrinologists during the transition process, and general and disease-specific resources to assess transition readiness and facilitate transition.

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Destination unknown: Parents and healthcare professionals' perspectives on transition from paediatric to adult care in Down syndrome

Cited by 6 publications

References 40 publications

Continuity of care for children with anorexia nervosa in the Netherlands: a modular perspective

Continuity of care for children with anorexia nervosa in the Netherlands: a modular perspective

Empowering Lives: Navigating the Landscape of Down Syndrome Support in Saudi Arabia

Facilitating the transition from paediatric to adult care in endocrinology: a focus on growth disorders

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