Enhancing care of children with complex healthcare needs: an improvement project in a community health organisation in Ireland

Abstract

BackgroundIntegration of care for children with complex care needs is developing slowly internationally. There remains wide variation in the governance of, and access to, care for these children and their families.Local problemThere was a need to develop a service that would have a specific remit for organising the overall management and governance of the care of these children in the community.MethodA bespoke model was established specifically to support the needs of children with complex healthcare needs (CHNs). The sole focus of the team is to provide the highest standard of care to these children and their families, and to enable families to remain central to decision-making.InterventionThe service for children with CHNs was established in August 2017 with the appointment of a service manager and case managers. A comprehensive training and education programme was put in place to support care to the children and their families.ResultsThe service is viewed as delivering high-quality care. Parents and stakeholders highlighted the value placed within the service on individualised care, specialist knowledge and the importance of advocacy.ConclusionsThe model recognises the exceptional lives these children and families live, given the complexities and challenges they have to overcome on a daily basis. The team have built a specialist knowledge and skill set in supporting families and others involved in the care of the child, as they are solely employed and dedicated to the provision of care to children with CHNs. The corporate governance structures seem strong and stand up to scrutiny very well in terms of parents’ and stakeholders’ perspectives and in the context of published international best practice.

Integrated care for children living with complex care needs: an evolutionary concept analysis

“…Children with complex care needs (CCNs) have a dynamic and individual set of care needs that can only be addressed through long-term and ongoing support delivered by a range of different health and social care providers across diverse sectors [1]. They often live with multiple concurrent conditions with significant functional limitations, high symptom burden, along with frequent and prolonged hospital stays, and in some cases high rates of pediatric emergency department (ED) and pediatric intensive care unit (PICU) admissions [1][2][3]. It has been cited internationally that children with CCNs and their families experience difficulties accessing adequate and consistent psychological support, health education, and community services [2,4,5].…”

“…They often live with multiple concurrent conditions with significant functional limitations, high symptom burden, along with frequent and prolonged hospital stays, and in some cases high rates of pediatric emergency department (ED) and pediatric intensive care unit (PICU) admissions [1][2][3]. It has been cited internationally that children with CCNs and their families experience difficulties accessing adequate and consistent psychological support, health education, and community services [2,4,5]. Dissatisfaction with care coordination and inadequate communication among multiple providers involved in the child's care are also two key issues experienced by families, which leads to the provision of inconsistent information and confusion for families over points of accessing care [1,2,6].…”

“…It has been cited internationally that children with CCNs and their families experience difficulties accessing adequate and consistent psychological support, health education, and community services [2,4,5]. Dissatisfaction with care coordination and inadequate communication among multiple providers involved in the child's care are also two key issues experienced by families, which leads to the provision of inconsistent information and confusion for families over points of accessing care [1,2,6]. A key barrier in accessing the relevant support and information families require is the fragmented design of healthcare systems, as many operate using traditional models of care that are designed to deliver episodic care, and do not adequately support children and families who require ongoing care [3].…”

Families with complex needs: an inside perspective from young people, their carers, and healthcare providers

“…In healthcare settings, this is reflected in the multidimensional health and social care needs, both in the presence of a recognized medical condition or in the absence of a unifying diagnosis (Brenner et al 2018 ). Complex needs most often involve additional medical, psychological, or social support; long-term personalized care; constant re-evaluation, adaptation, and management of care planning; involvement of several and often new stakeholders; accessing appropriate health, educational and community services; adapting family life according to each member’s needs (Brenner et al 2018 , 2021 ; McGregor et al 2016 ). Recent research suggests that the impact of the unmet needs in this population may have been underestimated (McGregor et al 2016 ; Smith et al 2015 ).…”

“…Coordinating the healthcare framework with the family dynamic can be even more challenging when children and adolescents with complex needs transition into young adulthood (Bradford et al 2018 ; Black et al 2009 ; Slater et al 2016 ; Woodgate et al 2015 ). Young people’s needs and expectations vary significantly depending on their age and condition and require constant transitions, transformations and re-adaptations of care (Brenner et al 2021 ; Kirk 2008 ). For example, young people have to adjust from co-care with parents to independence and autonomy in self-care, from pediatric to adult healthcare, from special education to special work conditions (Kirk 2008 ; Slater et al 2016 ).…”