Background: The active involvement of patients and the public in the design and conduct of research (Patient and Public Involvement) is important to add relevance and context. There are particular considerations for involving children and young people in research in potentially sensitive and emotional subject areas such as palliative care. Aim: To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study. Design: Anonymous written feedback was collected from group members about their experiences of Patient and Public Involvement in a paediatric palliative care research study. An inductive thematic analysis of the feedback was conducted using NVivo. Setting / Participants: Young people aged 12–22 years who were members of existing advisory groups at a children’s hospital, hospice and the clinical research network in the West Midlands, UK. Results: Feedback was provided by 30 young people at three meetings, held between December 2016 and February 2017. Three themes emerged: (1) Involvement: Young people have a desire to be involved in palliative care research, and recognise the importance of the subject area. (2) Impact: Researchers should demonstrate the impact of the involvement work on the research, by regularly providing feedback. (3) Learning: Opportunities to learn both about the topic and about research more widely were valued. Conclusions: Young people want to be involved in palliative care research, and recognise its importance. A continuous relationship with the researcher throughout the study, with clear demonstration of the impact that their input has on the research plans, are important.

ObjectivesTo investigate the views and experiences of general practice of children with life-limiting and life-threatening conditions, and their family members, through secondary analysis of a qualitative serial interview study. Thematic analysis was conducted on all interview data relating to experiences of primary care.SettingWest Midlands, UK.ParticipantsA total of 31 participants (10 children with life-limiting and life-threatening conditions and 21 family members) from 14 families.Study design and settingSecondary thematic analysis of qualitative interview data from a study carried out in the West Midlands, UK.Method41 serial interviews with 31 participants from 14 families: 10 children aged 5–18 years with life-limiting and life-threatening conditions, and 21 of their family members.ResultsThree key themes emerged: (1) poor experiences of general practice cause children and families to feel isolated, (2) children and families value support from general practice, and (3) there are practical ways through which general practice has the potential to provide important aspects of care. Children and families reported benefits from fostering their relationship with their general practice in order to access important aspects of care, including the assessment and management of acute illness, chronic disease and medication reviews, and holistic support.ConclusionChildren with life-limiting and life-threatening conditions and their families value the involvement of general practice in the care, alongside their paediatric specialists. Ways of developing and providing such support as part of an integrated system of care need to be developed.

AimsPatient and Public Involvement is an integral part of research in order to add relevance and context, and is a requirement of many research funders. The importance of evaluating the experience of PPI group members and the impact of PPI is gaining momentum. This abstract, which describes an evaluation of the experiences of young people providing PPI for a palliative care research project, is presented by the research team and three members of the PPI group.MethodsFollowing a PPI session with 16 young people aged between 12 and 20 years old, group members were asked to provide anonymous written feedback on any aspect of their PPI experience related to this palliative care research project. Comments were written on post-it notes using a method based on ‘Tell Me…’, as outlined in RCPCH and Us Recipes for Engagement. The comments were transcribed and an inductive thematic analysis conducted using NVivo.ResultsFeedback was provided by all 16 young people. Two overarching themes emerged from the data:Engagement in the research. Group members want the PPI work to have an influence on the research, and for the research to have an impact. Benefits to young people included opportunity to learn both about the topic and about research more widely. ‘Helps to make you feel that you are involved in helping the community’‘Relevant interesting subject that most young people are aware of, I had experience’‘Important as no-one wants to talk about it!Relationship with the researcher, which allows the discussion of sensitive topics and is an ongoing process. Young people want to see the results of their PPI in the research. ‘It has been conducted in a way that makes me comfortable to contribute’The most frequently used words in the feedback included ‘interesting’, ‘involved’ and ‘people’.ConclusionPPI in palliative care research can be a fulfilling experience for young people despite the sensitive subject. The relationship with the researcher and the conduct of the PPI work are important factors. Young people report reasons to be involved as interest in the subject area, a desire to have influence on the research process and for the research to have impact.