1. Exploring families’ perceptions of their needs during the acute stage of severe traumatic brain injury in childhood Claire Fraser, Dr Susan Kirk, Dr Debbie Fallon University of Manchester Dr Grace Vassallo, Miss Gillian Robinson Royal Manchester Children’s Hospital, CMFT

2. Overview Background to the research Research aims Developing the methodology PPI: Involving families in research design Refining the methodology Benefits of PPI Next steps…

3. Background Annually 600 children admitted to PICU in UK with TBI May lead to parental stress & challenges to family functioning Studies suggest families have unmet information & support needs Needs during acute phase of childhood TBI are under-researched

4. Research Aims Study will explore: – Parents’ perceptions of their support needs – Parental involvement in treatment decision making – How parent information & support needs could be met during the acute stage – Relationship between degree of impairment (KOSCHI) and perceptions of need

5. Developing the methodology Questionnaire to families of children with severe TBI admitted to PICU at RMCH since 2007 (N=100) Need for more in-depth, qualitative approach identified Opportunity for research collaboration Need for parent advisory group input into research design

6. Involving Families 4 families identified and invited to take part in parent advisory group 3 chose to take part – individual meetings at family homes Discussion topics: – Research aims – how best to ask these questions – Feedback on draft Parent Information Leaflet PPI vs. research interview – parents want to share their experiences

7. Refining the Methodology Parent advisory group input extremely helpful What does ‘acute’ mean? ‘Life or death?’‘Whilst on PICU?’ ‘Ward stage? This was more traumatic’ – Changed to: ‘early days & weeks whilst your child was in hospital’ – Even then – this is not a static period – needs & level of coping will change – More information can = more support needed

8. Refining the Methodology Involvement in treatment decision making will certainly change over time Ask who should provide support/information as well as type of support/info needed

9. Refining the Methodology Refined research title – ‘too long’ Removal of reference to ‘perceptions’ and ‘acute’ Clear definition of purpose of study – in lay terms: ‘you could make a difference to other parents’ General language refinements, e.g., ‘being interviewed’ rather than ‘participating’

10. Benefits of PPI Good support for the research: – ‘the questions you are considering asking parents are thorough, sensitive and really would be appropriate at a time that is very difficult for the families involved’ – ‘the leaflet is great…it clearly answers all the questions you might have’ Importance of emotional support procedure post interview highlighted– ‘there may be a lot of unresolved issues for some families’ REC commendation

11. Next Steps… Ethical approval granted Now recruiting families (n = 21) Data collection (Nov – Feb 2013) Data analysisIncluding Write UpPPI Involvement (January – April 2013) Dissemination (May 2013)

12. Any Questions? Research team contact details: Claire Fraser, Research Associate E-mail: claire.fraser@manchester.ac.uk Tel: 0161 306 7882 Dr Sue Kirk, Chief Investigator E-mail: sue.kirk@manchester.ac.uk Tel: 0161 306 7872