Siblings, Families and Cystic Fibrosis.
Aim
To develop research skills and knowledge in order to prepare a research protocol to be conducted with siblings of children with cystic fibrosis.
Scholarship Objectives
The Key objectives for the part –time study period 2012 / 2013
- a) To gaining depth theoretical and practical knowledge to enable my to development as an effective researcher.
- b) To understand the importance of effectively constructing a research protocol
- c) To explore the literature in order to inform my research protocol.
- d) To gain insight into the political and ethical frameworks in which to conduct the research.
- e) To gain research ethics committee approval
- f) To disseminate my training progress and developments
Main Report
Since gaining the Florence Nightingale Research Scholarship (Band Trust) for the academic year 2012/2013, I have experienced an exciting and challenging journey that has set the foundations for my research project. During the scholarship period I have had the privilege to undergo training and development in advanced research methods for post – graduate researchers. The training has been undertaken at the Cardiff University Graduate College/ ESCR funded Doctoral Training Centre.
As a result I have made considerable development in planning my research project to meet the required outcomes for the first year of my PhD preparation. My research question has now been formulated and my extensive training in qualitative methodology this year has informed the nature of my study design.
It will use visual elicitation and narrative to gain rich insight into the experiences of siblings living with a brother or sister with cystic fibrosis. Participants will be asked to devise two collages on separate occasions and these will be based on two identified themes. Children’s participation will guide my study.
My study has now been approved and passed by the internal Research Review and Ethics Screening Committee (RRESC) within the school of Health Care Science at Cardiff University. This was a prerequisite to submitting work for NHS Research & Development approval and Research Ethics Committee (REC) approval that I have now gained.
Background findings informing the need for this research have been disseminated at local and national level. Links are also being formulated at International level. Collaboration with local paediatric consultants and a CF Trust family advisor has been imperative for formulation of my protocol. Necessary support has also been sought from my academic supervisors.
Conclusion
I have now completed the preparatory phase of this project and gaining ethical approval will now enable me to commence recruitment and data collection with children during the academic year of 2013/2014.