Listening to Parents’ Stories

Over the last few weeks, Living Life to the Fullest co-researchers have been working on writing an interview schedule for use with the parents and carers of disabled children and young people with the label of life-threatening and life-limiting impairment (hereby LL/LTIs).

Co-researchers have recently finished data collection with young disabled people living with LL/LTIs. Living Life to the Fullest collected young people’s narratives through a unique peer-to-peer interviewing model, as co-researchers in the Co-Researcher Collective led data collection with fellow young disabled people. In our next phase of the project, co-researchers will undertake a series of qualitative semi-structured interviews with parents and carers, seeking stories of their lived experiences of the intersections of parenting and disability.

An interview schedule is, essentially, ‘a list of open questions that allow the participant to respond in a focussed way to the researcher’s interests’ (Martin, 2016). According to Martin (2016), ‘schedules often outline specific questions, with an order and prompts, and suggested wording’. Co-Researchers collectively wrote an interview schedule that contained questions rooted in lived experiences and their inner worlds of what it means to live short(er) lives as young people with precarious futures. Practically-speaking, this involved co-writing the schedule itself and then coming together to discuss – question by question – whether questions are ethical, sensitive, and ultimately, will enable parents to tell their stories in ways meaningful to them.

These questions, and the reflexive dialogues they create, centre emotion in ways repudiated in much research employed in the field of social sciences. As Jones and Liddiard (2018: 390) proclaim, ‘we follow Burkitt (2012: 458), conceptualising emotion and feeling not as barriers ‘to clear reflexive thought’ but as necessary’. Thus emotion is generative towards a human understanding of disabled childhoods in times of extensive ableism (the cultural privileging of ability) and disablism (the discrimination disabled people face).

As Runswick-Cole et al (2018: 649) suggest, it is imperative ‘to delve into the life worlds of children and their families and to understand lived experience through the lenses of emotion, intimacy, love, care and proximity’. Taking such a position means acknowledging experiences of disability ‘in ways seldom considered in other ways of knowing and theorising childhood’ (Runswick-Cole et al 2018: 649).

Are you the parent of a child or young person living with a life-limiting or life-threatening impairment?

Do you want the chance to tell your own story and speak about your experiences?

If so, we would like to invite you to participate in our research project that seeks to forge new understandings of the lives, hopes, desires and contributions of children and young people with life-limiting or life-threatening impairments and their families. We are looking for people to take part in an interview, either over Skype and/or Facebook messenger or email.

Please see here for more information, or email



  1. Burkitt, I. (2012) ‘Emotional Reflexivity: Feeling, Emotion and Imagination in Reflexive Dialogues’, Sociology, 46: 3, 458–472

  2. Jones, L. and Liddiard K. (2017) ‘A Diversity of Crip Childhoods? Considering the Looked After Childhood’. In K. Runswick-Cole, T. Curran and K. Liddiard, (eds.) The Palgrave Handbook of Disabled Children’s Childhood Studies. Basingstoke: Palgrave Ltd

  3. Martin, C. (2016) Qualitative Research Methods: Interviewing. Online. Available from file:///Users/kirstyliddiard/Downloads/Interviewing_MMC_12.1.16.pdf [Accessed 30/7/2018]
  4. Runswick-Cole, K., Curran, T. and Liddiard, K. (eds.) (2018) The Palgrave Handbook of Disabled Children’s Childhood Studies. Basingstoke: Palgrave Ltd.






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