Siblings, families and cystic fibrosis.

Aim

To develop research skills, gain new knowledge and gain clinical networks to enable me to conduct research with siblings of children with cystic fibrosis.

Scholarship Objectives

The Key objectives for the part –time study period 2013 / 2014

a)     To gaining depth theoretical and practical knowledge to enable my to development as an effective researcher.

b)    To understand the importance of safely and effectively recruiting participants.

c)     To explore the literature and attend training in relation to recruitment of participants and early data collection.

d)    To apply ethical frameworks and principles when conducting research.

e)      To gain entry to the ‘field’.

f)      To begin recruiting participants.

g)    To collect data.

Main Report

Since gaining the Florence Nightingale Research Scholarship (GNC) for the academic year 2013/2014, I have continued on an exciting and challenging journey that has moved from setting the initial foundations of a research project in preparing a protocol and gaining ethical approval, to seeing the project ‘come to life’.  During the scholarship period I have had the privilege to undergo training and development in relation to recruitment of participants, participatory research methods, entering ‘the field’ and data collection.  The training has been undertaken at the Cardiff University Graduate College/ ESCR funded Doctoral Training Centre.  In addition I have conducted my own reading, attended seminars of interest as well as one to one supervision sessions.

As a result I have made considerable development in recruiting participants and collecting early data.  As a result of attending cystic fibrosis clinic within a local health board and placing information on the cystic fibrosis forum as well as talking to people about my work, I have successfully recruited 9 of my 10 participants required for my study.  This has been a tremendous leap in taking my work forward and using my research methods of visual elicitation and narrative inquiry to gain rich insight into the experiences of siblings living with a brother or sister with cystic fibrosis.  Participants have been asked to devise two collages/pictures on separate occasions and are based on two identified themes.  Children’s participation is guiding my study.

The first and second phase of my data collection in relation to the topics ‘me and my family’ and ‘future selves’ has been completed with 5 of the siblings during my part time study period over the academic year.  Children have produced their own creative pictures and have engaged in narrative interviews and ‘getting to know you sessions.  Each family has four 1 hour visits on separate occasions. The siblings and their families have stated that the children have benefited from being participants in the project and it has helped them to talk about living with a brother and or sister with CF.

The study design and early data collection results have been disseminated at local, national and International level. Links have also been formulated at International level.  Collaboration with local paediatric consultants and the cystic fibrosis team is ongoing and remains an essential aspect of the study.  Dedicated time in the field with siblings and their families is still ongoing. Necessary support has also been sought from my academic supervisors.

Conclusion

I am have now recruited 9 of my 10 participants and I have completed data collection with 5 of the participants.  Data collection is ongoing with 4 participants and I still need to recruit my final participant, but do not envisage a problem with this.