Title: Families' Needs Following Severe Traumatic Brain Injury in Childhood
Project timescale: From 07 May, 2012 to 06 May, 2013 (Added to website on: 05 November, 2012 - Date last updated: 09 May, 2013)
Source of funding: Research for Patient Benefit (RfPB) Programme (NIHR)
Aims: Research Aims:
• To explore parents’ perceptions of their support needs during the acute stage of a traumatic brain injury
• To explore parents' involvement in treatment decision-making (including critical care choices)
• To identify how parents’ information and support needs would be best met during the acute stage
• To examine the relationship between degree of impairment and parent perceptions of need
Research designs used:Study of views/experiencesOther:
Methods used to collect data: Interviews
Research project description: Annually 600 children are admitted to paediatric intensive care units (PICUs) in the UK with Traumatic Brain Injury (TBI). However, the particular experiences and needs of families during the acute phase of a childhood TBI have been under-researched. A qualitative approach will be taken with data collected from parents/carers by semi-structured interviews and analysed using the Framework approach. Twenty one families in the North West will be invited to take part in the study and they will be sampled to ensure the sample includes a range in impairment.
Stages at which the public were involved: Planning the researchDesigning the research instruments (eg questionnaires, patient information sheets)Final Research ReportContributing / commenting on final report
Description of public involvement in research stages: During the meetings with the three families we were looking for guidance on how best to approach families and collect the information we needed - by jointly exploring the Research Aims. We also asked the families to comment on the draft ‘Parent Information Sheet' and draft 'topic guide'. The families have also been asked to comment on the research summary for participants and to suggest any areas for further research in the future.
Training and support provided for either members of the public or researchers involved in the project:
Examples of ways the public have made a difference to the research project: The input of the three families was extremely helpful and insightful. As a result of their input we have reduced the research project title (previously considered 'too long and off-putting'); we have removed reference to terms such as 'acute' and 'perceptions' in the Parent Information Leaflet/Project title - and other general language refinements.
Evaluating the impact of public involvement in the research: The involvement of the three families was commended by the NHS Research Ethics Committee – both the decision to involve families at the very early stages of the research which the committee ‘applauded’ and the final version of the Parent Information leaflet which was described as ‘excellent’.
Details of publications or reports resulting from the research: The final report has recently been submitted to the research commissioner/funder. We are currently working with the Parent Advisory Group to prepare a brief version of this report for all participating families.
Was/is your project user controlled: No
For further information on the project, please contact: Claire FraserResearch AssociateUniversity of ManchesterSchool of Nursing, Midwifery & Social WorkJean McFarlane BuildingOxford RoadManchesterM13 9PLUnited Kingdomclaire.email@example.com
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