Involving parents/carers of children with life-limiting conditions in research can be perceived as difficult and even unethical, due to the potential for causing participants distress (Hynson et al 2006). However, it is essential to obtain the views of these parents/carers in order to improve available services. Following identification of the need to provide parents/carers with access to 24/7 advice (Craft and Killen 2007), a project funded by the Department of Health in 2011 canvassed the views of parents/carers about establishing a telephone helpline for this purpose. Qualitative methods were employed: 26 parents/carers were interviewed, 8 face-to-face and 18 by telephone. One face-to-face interview was conducted with a bereaved parent. As the putative service would cover a wide geographical area, much of it rural, cost and time constraints precluded conducting only face-to-face interviews. Issues identified as requiring particular thought and planning included participant recruitment, interviewer preparation, ethical clarity, relevant differences between conducting telephone and face-to-face interviews, dealing with participant distress in both types of interviews and post-interview support for both participants and interviewers. As interviews were recorded and transcribed verbatim, it was also recognised that transcribers might be affected by some interview content. This paper discusses strategies adopted by the research team to address these issues. During the process of conducting the research, it became apparent that parents/carers actively wanted to participate in it, and to have their voices heard. The researchers concluded that, with proper planning and attention to the issues identified, research can be conducted with these individuals in a sensitive, effective and timely manner. Such research can provide a valuable contribution to the evidence base underpinning services for children with life-limiting conditions.
Hynson JL et al (2006) Palliative Medicine 20(8) 805-811
Craft A, Killen S (2007)Palliative Care Services for children and young people in England. DH, London.
Pollard, K., Beringer, A., & Frost, J. (2013, March). Interviewing parents of children with life-limiting conditions: issues and strategies. Paper presented at RCN International Nursing Research Conference, hosted in Belfast, UK