Interviewing parents of children with life-limiting conditions: issues and strategies Dr Katherine Pollard, University of the West of England Dr Antonia Beringer, University of the West of England Dr Jo Frost, Children’s Hospice South West

Today’s presentation will briefly …… Discuss the need for interviewing parents Outline a project undertaken with parents Discuss issues and strategies using examples from the project Present conclusions based on our experience

Why interview parents? Can be perceived as difficult/unethical (Hadjistavropoulos & Smythe, 2001; Dyregrov, 2004; Hynson et al, 2006; Stevens et al, 2010) BUT... Important to find out what parents think and want for their children (Hynson et al, 2006; Stevens et al, 2010)

Why interview parents? A growing body of research has started to point out that research participation may even serve the interests of the participants and not only those of the researchers. Instead of causing distress, research may be educational, enriching, therapeutic or empowering for vulnerable populations (Dyregrov, 2004, p.392)

The 24/7 project A qualitative project to explore parents’/ carers’ views about establishing a 24/7 telephone advice service Conducted by Children’s Hospice South West (CHSW) Funded by the Department of Health

The 24/7 project Based on work identifying need for parents/carers to have access to 24/7 advice (Craft & Killen, 2007) 26 parents/carers interviewed – 8 face-to-face; 18 by telephone Two interviewers –1 with a midwifery background –1 paediatrician

The 24/7 project Frost J, Beringer A, Pollard K (2011)The 24/7 project: The development of a service specification for 24/7 access to specialist nursing and medical telephone advice for parents and professionals caring for children with palliative care needs across the South West Peninsula. Project Report. Children's Hospice South West.

The 24/7 project Why did parents want to talk to us? That’s why I agreed to do this, because I’ve used them (CHSW) on occasions. Respondent 1 I don’t know how much help I will be but I’m quite happy you know if it helps. Respondent 16

The 24/7 project Methodological issues Ethics? Data collection? Recruitment? Support for parents, interviewers and transcribers?

The 24/7 project – ethics Formal ethical approval –What if it it is not required? Sound ethical principles –Do no harm Remember who the research is for –Who benefits?

The 24/7 project – data collection Methodological rationale –How can the research aim best be met? Pragmatic reasons –What practical issues affect the project design? Interviews or focus groups? –Talk to people individually or together? What type of interviews? –Face-to-face or telephone interviews?

The 24/7 project – recruitment Initial contact with parents –What is the best way to approach them? Response rate –How do you manage numbers? Gatekeepers

The 24/7 project – support Parents –What support should interviewers offer? Interviewers –What preparation do they need? Transcribers –What issues may affect them?

Conclusions Be clear about your ethical stance –who benefits? Check that data collection methods are: –appropriate for the research aim –feasible within the project restraints

Conclusions Recruitment –avoid cold calls for recruitment –explain why the project is required, why you are asking them to take part, and exactly what they will have to do Support for parents, interviewers and transcribers –make sure that interviewers are equipped to support parents –have appropriate back-up for interviewers –prepare transcribers for distressing material

References Craft A, Killen S (2007) Palliative Care Services for Children and Young People in England. HMSO, London. Dyregrov K (2004) Bereaved parents’ experience of research participation. Social Science & Medicine –400. Hadjistavropoulos T, Smythe WE (2001) Elements of risk in qualitative research. Ethics and Behavior 11(2) Hynson JL et al (2006) Research with bereaved parents: a question of how not why. Palliative Medicine 20(8) Stevens MM et al (2010) Research With Vulnerable Families Caring for Children With Life-Limiting Conditions. Qualitative Health Research 20(4) 496–505.

Thank you for listening. Any questions? For more information about the CHSW 24/7 project, please contact Dr Antonia Beringer (Project Lead) For more information about Children’s Hospice South West, please contact Dr Jo Frost, Acting Medical Director