Importance and Feasibility of Transitional Care for Children With Medical Complexity: Results of a Multistakeholder Delphi Process

Leyenaar, JoAnna K.; Rizzo, Paul A.; Khodyakov, Dmitry; Leslie, Laurel K.; Lindenauer, Peter K.; Mangione-Smith, Rita

doi:10.1016/j.acap.2017.07.005

Cited by 20 publications

(15 citation statements)

References 37 publications

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“…Most CWT in this study receive care in a medical home in an urban hospital setting. Consistent with the literature on care integration and medical home, 14,69 many participants identified health care providers (nurses, social workers, care coordinators, and physicians) as great resources. 24,48 Consistent with prior literature, care coordination and peer support were emphasized by participants as particularly helpful.…”

Section: Discussionsupporting

confidence: 55%

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Mai

Davis

Hamilton

et al. 2020

Clin Pediatr (Phila)

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This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.

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Section: Discussionsupporting

confidence: 55%

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Mai

Davis

Hamilton

et al. 2020

Clin Pediatr (Phila)

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“…However, informal processes within each discipline were followed and many teams had developed their own discharge planning tools to ensure all appropriate actions and processes were taken to ensure smooth transitions in care. While there are a number of recommendations and guidelines aimed at the supporting the care management of this population [8,48,50,51], there remains a limited number of empirically evaluated programs and interventions informing the transition from hospital to home [18]. Although the transition process should be customized to the individualized needs of children and families, overarching guidelines and structures should to be in place to ensure timely transition planning and continuity in care.…”

Section: Discussionmentioning

confidence: 99%

Improving transitions in care for children with complex and medically fragile needs: a mixed methods study

2020

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Background: Children with medical complexity are a small yet resource intensive population in the Canadian health care system. The process for discharging these children from hospital to home is not yet optimal. The overall goal of this project was to develop recommendations to be included in a provincial strategy to support transitions in care for children with complex and medically fragile needs. Methods: A wide assortment of stakeholders participated in this mixed method, multiphase project. During Phase 1, data was gathered from a range of sources to document families' experiences transitioning from an inpatient hospital stay back to their home communities. In Phase 2, pediatricians, nurses, and health administrators participated in key stakeholder interviews to identify barriers and facilitators to a successful transition in care for children and families with complex care needs. A multi-sector consensus meeting was held during Phase 3 to discuss study findings and refine key recommendations for inclusion in a provincial strategy. Results: Six case studies were developed involving children and families discharged home with a variety of complex care needs. Children ranged in age from 15 days to 9 years old. Nine telephone interviews were conducted in Phase 2 with pediatricians, nurses, and administrators from across the province. A variety of interinstitutional communication challenges were described as a major barrier to the transition process. A consistent message across all interviews was the need for improved coordination to facilitate transitions in care. The consensus meeting to review study findings included physicians, nurses, paramedics, senior administrators, and policy analysts from different health and government sectors and resulted in six recommendations for inclusion in a provincial strategy. Conclusions: This project identified policy and practice gaps that currently exist related to transitions in care for children with complex and medically fragile needs and their families. Our collaborative patient-centred approach to understanding how children and families currently navigate transitions in care provided a foundation for developing recommendations for a provincial wide strategy.

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“…Community nurses explicitly reflect this within their perceptions of their role, describing themselves as poorly educated and trained in complex paediatric care (Law et al, 2011). (Leyenaar et al, 2018). The use of a step-down service within a hospice model reviewed by Price et al (2017) was also recommended by the Regulation and Quality Improvement Authority (2013) to provide increased education and support for families through its phased discharge home.…”

Section: Implications For Practice and Educationmentioning

confidence: 99%

Parents' experiences of transition from hospital to home of a child with complex health needs: A systematic literature review

Ronan

Brown

Marsh

2020

Journal of Clinical Nursing

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Aims and objectives To critically appraise primary research on the views and experiences of parents of children with complex health needs during the transition from hospital to home. Background Children with complex health needs frequently transition across and within healthcare systems, due to their age, care needs and ongoing health conditions. Repeated and unplanned admissions are significantly higher for children with complex health needs. Yet parents, as the primary providers of care, report being unsupported and unprepared during the transition from hospital back to home due to poor communication, inadequate discharge planning and education, resulting in stress and anxiety within the home environment. Design Systematic review following PRISMA guidelines. Methods A systematic search was completed of the databases CINAHL, MEDLINE, PsycINFO, EMBASE and the Cochrane Library Review between January 2009 and September 2019. Data were extracted, categorised and analysed using a thematic analysis approach. An adapted CASP qualitative assessment tool was utilised for quality assessment. All included articles were marked for validity and relevance to current research with an overall score from 0–20. Results A total of 13 studies of mixed quality were identified. CASP quality scores ranged from 13–18. Four themes emerged highlighting parents' experiences of the emotional processes, communication, coordination and support and resources when transitioning from hospital to home. Conclusions Hospital discharge and transition from hospital to home is a complicated and at times frustrating process for parents of children with complex health needs. Parents report being exhausted and stressed during this often‐challenging period of adjustment which was perceived as a difficult and emotional process. There is a clear lack of support available for parents both from hospital and community services.

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Importance and Feasibility of Transitional Care for Children With Medical Complexity: Results of a Multistakeholder Delphi Process

Abstract: Parents and health care professionals considered several transitional care interventions important as well as feasible. This research might inform hospitals' transitional care programs and policies.

Cited by 20 publications

References 37 publications

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Improving transitions in care for children with complex and medically fragile needs: a mixed methods study

Parents' experiences of transition from hospital to home of a child with complex health needs: A systematic literature review

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