A multiple case study to explore the views and experiences of young people, their parents and carers, and healthcare professionals of the advance care planning process

Abstract

Background: This thesis presents a multiple case study of the views and experiences of young people, their parents/carers, and healthcare professionals (HCPs) of advance care planning (ACP). There is a need to understand the engagement of young people in their own ACP from the different, concurrent, perspectives of those people involved in the process.

Method: A qualitative research design was employed to recruit participants, where young people were identified as the unit of analysis. Data were collected using semi-structured interviews. Findings are presented using thematic analysis and critical discourse analysis to recognise the optimal timing of ACPfYP discussions, and barriers and facilitators to engaging young people in their own care planning.

Findings: The study identified six key themes: understanding of ACP; advance care planning for young people (ACPfYP) in practice; communication; education and training for HCPs; relationships; and organisational structure and culture. Experiences of ACPfYP were mixed across the case studies, but generally positive. Facilitators to the engagement of young people include the initiation of ACPfYP by a consultant when young people are in their mid-teens and their condition is stable. Triggers should be identified to begin age- and developmentally-appropriate discussions, supported by written information. Standardised documentation aids the communication and sharing of ACPfYP. Barriers to engagement include poor communication, relationships which are dominated by a power discourse, organisational structures and cultures which are inflexible and underfunded, and access to affordable training for HCPs.

Conclusions: Unique and significant contributions to knowledge have been provided through the research design and method of data analysis. Findings from this study provide a new insight and understanding into the experiences of ACPfYP, and are important to inform both practice and policy.

Date of Award	9 Aug 2019
Original language	English
Awarding Institution	Edge Hill University
Supervisor	KATHERINE KNIGHTING (Director of Studies)