Stakeholder perspectives: Communication, care coordination, and transitions in care for children with medical complexity

Abstract

PurposeThe purpose of this study was to obtain feedback on communication, care coordination, and transitions in care for hospitalized children with medical complexity (CMC).Design and MethodsThis descriptive, mixed‐methods study used online surveys with forced‐choice and open‐ended questions to obtain stakeholder feedback. Stakeholders included parents, healthcare providers, and nurses. Participants over 18 years of age were recruited from a Midwest children's hospital inpatient unit dedicated to care of CMC. Quantitative data were analyzed using t‐tests and one‐way analysis of variance. Qualitative description was used to analyze responses to open‐ended questions.ResultsParents' ratings of communication, care coordination, and transitions in care were generally high. Transitions from other facilities to the emergency department and unit received lower ratings. Providers and nurses gave high ratings to overall care, communication among providers and nurses on the patient unit, and experiences with discharge; however, between unit communication and unit‐based coordination received lower ratings. Providers and nurses had higher ratings for discharge preparation than parents (p ≤ .001). Three themes were identified in responses to the open‐ended questions: establishing balanced and collaborative relationships between the care team and families, taking a proactive approach to care coordination, and the importance of an inclusive, interdisciplinary, and centralized approach to care coordination and communication.Practice ImplicationsCollaboration among all stakeholders is needed to achieve coordinated care, inclusive communication, and transitions with positive outcomes during hospitalization. Parents identified a need for consistent communication from care teams, with the primary inpatient team taking a lead role. Including parents in care coordination and transitions in care is key, as they are the experts in their children's health and well‐being.

Pressure injury prevention measures in pediatric wards: nursing professionals' actions

“…Desse modo, a equipe de enfermagem deve adotar uma abordagem consistente de apoio ao envolvimento dos pais e família nos cuidados com a criança mediante comunicação efetiva, como orientações de enfermagem que atuem enquanto ferramentas propulsoras de cuidados compartilhados entre a equipe e o responsável pela criança, gerando melhorias na qualidade da assistência ao paciente pediátrico (13) .…”

Stuck in transit: A qualitative study of the transitional care needs of young people with epilepsy and juvenile idiopathic arthritis

“…Indeed, pre-transfer participants anticipated less personable encounters with staff in adult services (Coyne et al (2019). YP were sometimes unprepared for shifting communication dynamics in adult services and felt frustrated when they did not feel listened to or understood, which can act as a barrier to receiving personalized care (Hislop et al, 2016; Renedo et al, 2019), and deny the expertise patients and their families have in their condition (Williams et al, 2021).…”

“…Continuity of care was identified by commissioners as being at particular risk for those with multiple or complex conditions, and for whom holistic care can fragment into multiple transitions (Williams et al, 2021). This was largely attributed to the organization and commissioning of adult services as ‘single specialty’ and unequipped for holistic care, suggesting that better integration at commissioning levels are also needed (Kolehmainen et al, 2017; Maniapoloupos et al, 2018).…”

On ‘how Children's participation ought to be practiced: A preliminary ethical framework to optimise the participation of children with osteogenesis imperfecta in health care?’

“…The inclusion of multiple stakeholders' perspectives brings a more inclusive and wide view of the topic. This is needed to achieve coordinated care, inclusive communication and transitions with positive outcomes (Williams et al, 2021). Including the child and different stakeholders is the key since they all hold expertise in some aspects of children's health and well-being.…”