How patient involvement enhances research into feeding children during bone marrow transplantation
By sharing their views patients, families and researchers can ensure research is relevant
Patients, families and researchers can share their understanding and perspectives of an illness to ensure research is relevant
Patient and public involvement (PPI) in research refers to an active partnership between patients, the public and researchers (National Institute for Health Research (NIHR) and INVOLVE 2012). It can include family members and other people with an interest in the research topic, and can take place at any stage from proposal development to circulation (NIHR 2015).
Patients have perspectives based on their understanding of their illness. They may have different but valuable thoughts about health results from researchers.
Research funders tend to require PPI as a rule of funding. This article describes PPI activities that children, parents, dietitians and nurses undertook to inform the development of a research proposal exploring feeding in children during bone marrow transplantation (BMT).
PPI activities included: a focus group at a national meeting of ten children’s dietitians working in BMT centres; focus group of five newly qualified and specialist BMT nurses from Great Ormond Street Hospital (GOSH); and individual semi-structured interviews with three GOSH BMT patients, and three parents with experience of tube and intravenous feeding.
Discussions concerned which specific topics in the broader area of research were important, the acceptability and feasibility of research methods, and what outcomes should be investigated.
All participants provided consent to take part and each session was recorded.
Arranging the activities required detailed planning and preparation. A request was made months in advance for a focus group discussion to be added to the dietitians’ meeting, and a brief presentation of the proposed project was given at this meeting.
The researcher then asked the group specific pre-planned questions, including what the research questions should be, what outcomes were important and whether other centres were interested in becoming involved.
The remaining PPI activities were carried out on wards, which meant only minimal rearrangement of clinical commitments was needed to fit in the PPI work.
The nurses’ focus group was undertaken during nurses’ lunch breaks, when they were free from clinical work. To encourage discussion, the nurses were asked what feeding issues were important to them and why.
Children old enough to engage in conversation and parents were identified, and invited to take part in interviews.
Children were offered gift cards to encourage participation and, due to infection prevention and control issues, were interviewed in their rooms. Two children felt more comfortable talking without their parents and one preferred their mother to be present.
Parents were interviewed individually and one volunteered to be part of an advisory group for the proposed project. They were asked to talk about the feeding interventions their child had received, what they thought about them and what feeding issues were important to them.
- Feeding children during BMT is challenging and requires a team approach.
- Including PPI with a variety of people at this early stage of the project was crucial to provide opinions from different viewpoints.
- This approach, backed up by funding from the hospital’s Biomedical Research Centre, strengthened the proposal and ensured the research is addressing relevant topics important to patients and the public.
- National Institute for Health Research, INVOLVE (2012) Briefing Notes for Researchers: Public Involvement in NHS, Public Health and Social Care Research
- National Institute for Health Research (2014) Patient and Public Involvement in Health and Social Care Research. A Handbook for Researchers.
About the author
James Evans is a specialist paediatric dietitian, department of nutrition and dietetics, Great Ormond Street Hospital for Children, London, on behalf of the RCN’s Research in Child Health community.
This extended abstract summarises a research proposal made by the author to explore feeding during bone marrow transplantation