Children and Young People

The BRAVES project (Barriers to Research Access: Voices, Experiences and Solutions) is a collaboration between The Marie Curie Research Department and The Institute of Child Health. The project aims to provide evidence based guidance for recruitment to studies involving children with life limiting conditions or life threatening illnesses. This mixed methods project will explore the impact and effectiveness of recruitment practices from the perspective of children and young people, their families, researchers and health care professionals over the course of illness (e.g. diagnosis, deterioration, death and bereavement). The findings of this project could inform the design and evaluations of recruitment in future studies and contribute to increasing research participation both in this population and other populations in which research recruitment has been an issue.

The Team:

For more information, please visit the ICH web site.

Understanding decision making for children with high risk brain tumours: A Prospective, Longitudinal Study of Parents, Children and Clinicians to Provide Guidance for Clinical Consultations

A prospective, longitudinal, ethnographic study exploring decision making in children with high risk brain tumours. The project was set at the joint Children and Young People's Cancer Centre at Great Ormond Street Children's Hospital Foundation NHS Trust and University College Hospital London Foundation NHS trust (GOSH & UCLH). The project focused on interactions as they took place in real time, for 20 months from the February 2014 - October 2015, amongst clinicians, parents and children with high risk brain tumours (median survival is < 2 years at diagnosis) from diagnosis through to the death of the child. All encounters were recorded and transcribed verbatim. Interactions included consultations, informal encounters, palliative care team visits, MDTs and interviews. The dataset stands at over 3200 encounters. Data analysis is now underway.

Research aims:

• To inform the development of evidence based guidance which will assist parents, children and clinicians in decision making regarding care treatment and research participation.

• To provide a robust description and analysis of decision making for children with high risk brain tumours over the entire course of the illness with attention to the views, perspectives and actions of parents, children and clinicians.

The Team:

Emma Beecham

Background and Significance

Parents of children with a HRBT face a number of decisions throughout their care and treatment. A review of the literature reveals that QoL is a factor which frequently features in discussions to reach those decisions. However, it's meaning to CYP and parents is not well understood (Hinds 2010). Also worthy of note are recent studies on decision making indicating that most parents with a child with a life-limiting condition (LLC) prefer decision making to be a joint process between themselves and the healthcare professionals (HCPs) (Day et al, 2014; Oostendorp et al, 2015). Preliminary analysis of our collected data suggests there are differences in what quality of life means and indeed what is important to children, parents and HCPs respectively. How then are decisions to be made jointly between parents and the HCPs if a term used frequently in discussions of the child's care is interpreted differently?

In addition to differences in conceptualisation of Qol and its place in decision making, previous studies are in the main retrospective, conducted at single points in the illness with samples that are not reflective of the current population seen at major tertiary CYP oncology centres in the UK. This project builds on the project 'Understanding decision making for children with high risk brain tumours: A prospective, longitudinal study of parents, children and clinicians to provide guidance for clinical consultations'[1] which has just completed data collection and has generated a unique dataset of verbatim transcripts. Over the course of 20 months (February 2014-October 2015) two ethnographers, embedded in the clinical teams who provide care and treatment for these children, followed 24 children, 14 children from diagnosis through to death. They observed and audio recorded 3001 unique encounters, including 351 consultations and 609 informal encounters with clinicians.

Aims

1. To provide a robust description and understanding of what 'quality of life' (QoL) means to: (a) Children and young people (CYP) with a high risk brain tumour (HRBT); (b) their parents and (c) and healthcare professionals (HCP) involved in their care and treatment over the course of the illness.
2. To examine the role that their views of what constitutes QoL play in the decisions that children, parents and clinicians make about care and treatment over the course of the illness.
3. To develop recommendations and guidance for policy and practice: (a) for discussions of options and goals of care and treatment over the course of the illness and (b) to facilitate joint decision making

This will be accomplished through analysis of verbatim transcripts of consultations, informal conversations and interviews from the prospective, longitudinal study (mentioned above) of decision making for children and young people with a high risk brain tumour, their parents and healthcare professionals. We employ an open approach to conceptualisation of QoL looking at (but not limited to) perceptions of burden of treatment, individual's priorities, preferences, wishes, goals and values over the course of the illness.

Primary Supervisor: Myra Bluebond-Langner, Louis Dundas Centre, Institute of Child Health, UCL,

Secondary Supervisor: Darren Hargrave, Neuro-oncology & Experimental Therapeutics, Great Ormond Street Hospital for Children and Reader in Paediatric Neuro-oncology, Institute of Child Health

[1] Bluebond-Langner M [PI], Hargrave D (co-applicant), Kelly P (co-applicant), Gibson F (co-applicant), Bayliss J (co-applicant) Henderson E (Research Team), Pountney J (Research Team); Beecham, E (Research Team) ; Langner, R (Research Team). Informed decision-making for children with high-risk brain tumours: A prospective study of the exchange and processing of information among parents, children and clinicians providing guidance for clinical consultations (2013-18). [Funding received 13 July 2013]; Data Collection complete.