Evaluation of services for children with complex needs: mapping service provision in one NHS Trust

Abstract

The aim of this paper is to identify and descriptively map the key characteristics of the model of service delivery in operation, and to explore the user, carer and professional experience of service provision. This included an exploration of congruity and mismatch between the different stakeholder groups. In the United Kingdom (UK), 15% of the children under five years of age and 20% of the 5 to 15-year age group are reported to have a complex long-term condition, with the likelihood of having a condition increasing according to socio-economic circumstances. An increasing number of young people with complex needs are now surviving into late adolescence and early adulthood. However, service provision for children with complex needs is an area that, nationally, has been underdeveloped. An exploratory single-site case study was undertaken across one Primary Care Trust in the UK. Documentary and policy review were undertaken along with in-depth qualitative exploration. Eighteen in-depth interviews were undertaken with relevant stakeholders and professionals across the multidisciplinary teams. Families with children between 12 months and 16 years of age who have continuing complex care needs were invited to take part in an interview to give their views about the care they receive. Interviews focused on the family experience and understanding of the child's condition, transition between secondary and primary care, effectiveness of admission and discharge planning and the overall contribution of different professionals. Professionals were also asked about their experiences of delivering care. Findings This study highlighted issues of communication between professionals and with parents and children as a major factor in determining the quality of service provision. Key aspects relating to the model of service provision, namely, paucity of communication, interagency collaboration and the parent as health worker, are highlighted. Parents experienced both health and social service communication challenges when seeking care for their child. These challenges can be located within a general systems theory and hierarchy approaches to understand the complexity of service provision.