A multi-perspective qualitative study to understand the experience and impact of the Child and Young Person’s Advance Care Plan (CYPACP)
Initiating a CYPACP involves several steps to establish that it is appropriate and is completed by a senior paediatrician or appropriately trained senior nurse who knows the family well (resuscitation section requires paediatrician discussion/signature). It usually involves dialogue over extended periods to allow the family time to make informed decisions, with input from the core and wider multidisciplinary team. Once agreed, Local CYPACP Coordinators (usually senior paediatricians, advanced/consultant nurses) ensure that plans in their area are completed appropriately, reviewed and copied to relevant parties. Local Lead Clinicians for Advanced Care Planning also act as the primary link between their organisation and the CYPACP Collaborative.
Rapid uptake of the CYPACP in the West Midlands and other regions suggests an unmet need. However, there is little evidence to determine whether it performs as intended and has benefits for families. This study will address this gap by examining how the CYPACP is implemented from the perspectives of families and professionals involved in their care.
To understand the perceptions, experiences and impact of the CYPACP on young people, parents and healthcare professionals, in order to inform improvements in supportive and palliative care.
Qualitative study, underpinned by an interpretative framework. Data will be collected using case-based serial interviews and questionnaires with families and staff who have experience of the CYPACP in the West Midlands.
Analysis will use thematic and linguistic approaches to provide in-depth understanding about the ‘decision-making ecology’ that provides the backdrop to initiating, constructing and using the CYPACP helping us understand:
- Families’ preferences for advance care planning (including communication and decision-making)
- Barriers/facilitators to co-constructing plans
- Implementation in ‘real-world’ settings
- How the CYPACP shapes the experience, delivery and quality of care
- What can be done to optimise the CYPACPs’ capacity to reach its target population and improve outcomes.
Findings will be used to develop a theoretically informed improvement strategy, including revisions to the CYPACP resources (if indicated). The widely disseminated results will also include generalized learning for improvement beyond paediatrics.