What does shared decision-making mean to children aged 8-12 years with Acute Lymphoblastic Leukaemia?

Description

Aims:

• To develop a research method that is feasible and acceptable to children aged 8-12 years with ALL to elicit their perspectives on complex scenarios in healthcare
• To obtain new insight into understanding of children's perspectives regarding their involvement in decisions about their treatment for ALL

Method

8-12 children/young people who are currently in the maintenance phase of their treatment for ALL or have completed treatment within the last 12 months will be recruited. Children in the maintenance phase of treatment will be aged 8-12 years and children/young people who have completed treatment may be between 9 and 15 years.

Children and young people will be interviewed using a topic guide designed to explore their understanding of decisions and decision making before moving on to considering treatment and care related decisions. Data will be analysed using Framework Analysis to enable a structured and systematic approach to analysis. Each child/young person’s responses will be considered individually and more broadly to compare and contrast data across the treatment trajectory.

Once data has been analysed the participants and their parents along with members of the advisory group will be invited to an optional engagement workshop. Findings will be shared and discussions held to identify priorities for future research.

Background

Participation in decision-making is advocated as it has been shown to improve health and social care outcomes for some patients as they become active participants in managing their own health. The Department of Health are clear that ‘no decision about me, without me’ should apply to all patients including children and young people (C&YP). Whilst children have the right to be included in the decision-making process they are often excluded, possibly because of their actual or perceived level of competence. Although there is emerging work considering parents and professionals involvement in treatment related decision-making little is known about how children make decisions or how they can be included in the decision-making process.

Children with Acute Lymphoblastic Leukaemia (ALL) undergo treatment lasting between 2-3 years and acquire a vast amount of knowledge about their illness and its treatment. Due to the length of their treatment they are increasingly likely to develop the capability to participate in the decision-making process during their illness trajectory.

People

Kirsten Huby (PI), Professor Veronica Swallow, Dr Linda Milnes

Funding body: School of Healthcare Research Pump Priming Fund, £2,820

Contact: Kirsten Huby