Patient and public involvement (PPI) risk assessment
| Stage of PPI | Potential risks | Plan to mitigate risks |
| Approaching groups of young people | Young people who live with life-limiting or life-threatening conditions are at constant risk of a deterioration in their health. These are situations that other young people may not be familiar with and which they therefore might find difficult. | Groups of young people, some of whom have life-limiting conditions and others who do not, were approached separately and through two different organisations (the hospital and hospice). PPI work with each group is carried out concurrently but not at the same group sessions. |
| Support for PPI group members | Discussion of experiences of life-limiting conditions can cause distress for children and young people. | Should any children or young people require support either during or following the meeting, this is provided by the researcher or by the group facilitators. While PPI work can result in open and honest conversations about difficult topics, this is not the same as professional emotional support. If necessary, group members can be provided with information about whether to access further support. |
| Using research findings to develop recommendations | There are ethical considerations for the research study participants in terms of ensuring their anonymity and to avoid misinterpretation of qualitative data. | The researcher will be responsible for conducting the data analysis before this is shared with PPI group members and for ensuring that findings remain in context. No identifiable or raw data will be shared. |