The meaning of ‘normality’ among children and young people with life-limiting or life threatening conditions

Debbie Braybrook*, Lucy Coombes, Anna Roach, Daney Harðardóttir, Hannah Scott, Myra Bluebond-Langner, Katherine Bristowe, Richard Harding

*Corresponding author for this work

Research output: Contribution to conference typesAbstractpeer-review


Background: Parents of children and young people (CYP) living with life-limiting or life-threatening conditions (LLLTCs) describe the importance of normality for CYP - being able to engage in the same activities as other children of their age. Yet, research in this area is dominated by the experiences of proxies, not children themselves.
Aim: To examine the meaning and importance of normality to CYP with LLLTCs. Methods: Qualitative semi-structured interviews with purposively sampled CYP with LLLTC (aged 5-17) across nine UK inpatient and outpatient settings. Framework analysis of verbatim transcripts was conducted for the theme of normality within a framework of symptoms and concerns, supported by NVIVO.
Results: 26 CYP with LLLTCs (10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Participants described experiences of: 1) pursuing normality, particularly when comparing themselves to healthy CYP. This was challenging physically, emotionally and existentially, and forced them to try to minimise the challenges their condition imposed; 2) adjusting to a new normal, new physical norms and practical routines, and ways of managing their psychological wellbeing; and 3) the importance of living their normal life, developing friendships during inpatient stays, and helping others living similar lives, as ways of reinforcing normality and contributing something meaningful.
Conclusions: CYP with LLLTCs value the concept of normality and utilise it in different ways. Comparing themselves to healthy CYP can be challenging, so helping them to find normality, and ways to function in ‘normal’ ways is meaningful and validating for CYP. These insights from CYP with diverse diagnoses about their experience of normality can inform practice, by guiding richer and more therapeutically beneficial discussions about their condition, their everyday lives and planning for the future.
Funding: European Research Council [Grant ID: 772635]

, M. Bluebond-Langner3,4
, K. Bristowe1
R. Harding1
Original languageEnglish
Publication statusPublished - 26 May 2022
Event5th Maruzza International Congress on Paediatric Palliative Care - Auditorium Antonianum, Rome, Italy
Duration: 25 May 202228 May 2022


Conference5th Maruzza International Congress on Paediatric Palliative Care
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