Complexity and outcomes among children and young people with life-limiting/life threatening conditions: establishing a multisectoral collaborative and conceptual framework to advance evidence and practice

Background Children and young people with life-limiting or life-threatening conditions have highly complex needs to be met across health, education and social care. Their parents encounter multiple challenges in engaging with and receiving appropriate care. They often fall between gaps in health, social care and special education.

There is currently no agreed method to identify and measure complexity in this population, which is crucial for allocating resources to meet their needs.

Aims and Objectives Aim: to enable delivery of high-quality child-centred care through assessment of complexity and outcomes by health, social care and education providers care for children and young people with life-limiting conditions.

Objectives: Form a new collaborative across sectors: health (NHS and voluntary sector), social care and education providers (special and mainstream education) Establish engagement across these sectors and PPI, with focus on underserved groups Conduct a realist review of the evidence for multisectoral integrated care for children with life-limiting conditions Identify stakeholder views (child, families, professionals across health, social care and education) on the meaning and practical application of “complexity” Develop a cross-sector evidence-based conceptual model of complexity to inform delivery and assessment of high quality and integrated care Write, refine and submit a Programme grant, which aims to develop and test a child-centred, nationally applicable casemix classification to enable delivery of multi-sector integrated care to meet complex needs of children with life-limiting conditions, and to support more equitable allocation of resources.

Development work plan The three workstreams have PPI and EDI embedded across all workstreams. Workstream 1 (objectives i.ii).

We will form and expand the new collaborative across sectors: health (NHS and voluntary sector), social care and education providers ensuring that we work closely with community organisations and our PPI partners to ensure diversity within this collaborative.

Workstream 2 (objectives iii,iv) We will conduct a realist review of the evidence to understand; How, why and under what circumstances is integrated multisectoral assessment and care achieved for children with life-limiting conditions?

We will then undertake a qualitative interview study to identify stakeholder views (child, families, professionals across health, social care and special education) on the meaning and practical application of “complexity”.

We will use inclusive methods of recruitment and data collection e.g. using interpreters and Talking MatsTM to optimise inclusion of those from minoritized ethnic groups and those with non-verbal communication methods. Workstream 3 (objectives v, vi).

We will develop an evidence-based conceptual model of complexity for children with life-limiting conditions using Logic Model development methodology and Nominal Group Technique to obtain consensus with stakeholders including parents and professionals across health, education and social care. Timelines for delivery Months 0-6: objectives i-iii.

Months 7-15: objectives iv. Months 16-18: objectives v,vi. Anticipated Impact and Dissemination Outputs will be published in journals and presented at conferences.

The subsequent programme grant application will aim to better quantify needs, and to support more equitable allocation of resources for children with life-limiting conditions.