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

TY - CONF

T1 - The meaning of ‘normality’ among children and young people with life-limiting or life threatening conditions

AU - Braybrook, Debbie

AU - Coombes, Lucy

AU - Roach, Anna

AU - Harðardóttir, Daney

AU - Scott, Hannah

AU - Bluebond-Langner, Myra

AU - Bristowe, Katherine

AU - Harding, Richard

PY - 2022/5/26

Y1 - 2022/5/26

N2 - 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

AB - 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

M3 - Abstract

T2 - 5th Maruzza International Congress on Paediatric Palliative Care

Y2 - 25 May 2022 through 28 May 2022

ER -