ACP Experiences Project
Research type
Research Study
Full title
A multiple case study of the views and experiences of young people, their parents/carers and healthcare professionals in the advance care planning process.
IRAS ID
206015
Contact name
Ben Hughes
Contact email
Duration of Study in the UK
1 years, 10 months, 31 days
Research summary
The study will explore the views and experiences of young people aged 13-19 years, their parents/carers and healthcare professionals in the advance care planning process. In doing so, the study will identify the challenges and facilitators to engaging young people in their own Advance Care Plan (ACP). The ACP is used to provide information and guidance on the best way to provide care for the patient and to support the young person and their parents/carers wishes. The document provides a framework for discussions with the young person and their parents/carers about choices for end of life and is a record of the decisions made.
This study will adopt a case study methodology and consists of two phases of data collection, using semi-structured interviews, to explore the implementation and use of Advance Care Plans for Young People (ACPfYP). Phase One will explore the views and experiences of young people and their parents/carers; Phase Two will explore the views and experiences of Healthcare Professionals (HCPs) implementing and using advance care planning with the young people identified in Phase One. Data analysis will be conducted using a thematic approach, with NVivo as a qualitative data management tool.
Although research has been conducted separately with each of the three participant groups identified in the study, there is currently a lack of qualitative evidence-based research into the views and experiences of all three participant groups concurrently around individual cases. This study will contribute to existing knowledge by building case studies around the young people to identify the views and experiences of young people, their parents/carers and healthcare professionals as part of the ACPfYP process.
REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
16/NW/0643
Date of REC Opinion
14 Oct 2016
REC opinion
Further Information Favourable Opinion