Ethical dilemmas and participant access in qualitative research for childhood bereavement

So what’s the problem for researchers? A conversation ‘stopper’ in my own professional and personal context. Limited access to research communities of relevance. Where do I ‘fit’? Limited local contacts; organisations work with their own ethical guidelines for access to staff and clients. National charities have their own research staff and agenda for projects and are focused on future sustainability. Discussing any research with personal and professional connections can breach confidentiality and has the potential to create unknown emotional stress with those involved.

Ethical dilemmas in gaining participants Ethics form – passed twice due to changes in participant inclusion criteria. Timescale July 2015 to December 2015. Sensitively worded letters and information sheets to all participants. Carefully worded emails to 350+ local settings (two Local Authorities) with children aged 2-7. Responses in February 2016 gained 3 case studies (Parent, Practitioner and Headteacher/Manager). Further email requests across another two Local Authorities, social media requests and direct contact with a national charity from March 2016 to Dec 2017 resulted in 4 more case studies.

Ethical dilemmas in collecting the data Pilot studies enabled practice at managing sensitive conversations and responses to distressed participants. Protecting the interview space Knowing when to listen, pause the interview and reschedule as necessary. Follow up information with local and national support services were shared after the interview but also an offer to talk through anything else they wanted to share after the interview session. Researcher well-being

When is consent not consent? Participant willingness via email and conversations to agree an interview time. Conversations critical in reassuring all participants. Interview times re-arranged and again not able to participate. Work commitments and annual leave cited as reasons for non- participation at the mutually agreed time. Knowing when to stop pressing for a re-arranged interview. Interview information consent declined part way through for certain detail for exclusion. Additional notes after interview worthy of gaining consent.

Further considerations Don’t underestimate the time it takes to negotiate access to local and national organisations who may be supportive of your research. Plan for lengthy negotiated access to confirmed participants especially for sensitive studies. Be prepared for spontaneous stories told…they are important to the participant and need to be valued even if they might not be relevant to your study. Cutting a participant off mid story is not to be taken lightly and can undermine your relationship. Seek Twitter and LinkedIn support.