Literature DB >> 19805806

I've never not had it so I don't really know what it's like not to: nondifference and biographical disruption among children and young people with cystic fibrosis.

Brian Williams1, Joanne Corlett, Jon S Dowell, Joanne Coyle, Somnath Mukhopadhyay.   

Abstract

The relevance of biographical disruption and loss of self for children and young people is unclear, particularly in cases of congenital illness such as cystic fibrosis, where no prior period of wellness, stability, or perceived normality might exist. We explored the meaning, importance, and forms of maintenance of ideas of normality among 32 children and young people with cystic fibrosis. We examine the ways in which normalcy is produced, maintained, and threatened, and discuss the implications for the applicability and relevance of these traditional sociological concepts. Analysis of children's and young people's accounts resulted in a conceptualization of four forms of normalcy based on personal and social definitions and audiences. Biographical disruption appeared relevant but in a more nuanced form than its usual conceptualization when applied to adult populations. Maintaining normality within the family resulted in continual biographical revision in anticipation of future illness trajectory and life course.

Entities:  

Mesh:

Year:  2009        PMID: 19805806     DOI: 10.1177/1049732309348363

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  9 in total

1.  Self-management and skills acquisition in boys with haemophilia.

Authors:  Kate Khair; Liz Meerabeau; Faith Gibson
Journal:  Health Expect       Date:  2013-05-27       Impact factor: 3.377

2.  Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study.

Authors:  Hilary Pinnock; Marilyn Kendall; Scott A Murray; Allison Worth; Pamela Levack; Mike Porter; William MacNee; Aziz Sheikh
Journal:  BMJ       Date:  2011-01-24

3.  "Sometimes I feel like a pharmacist": identity and medication use among adolescents with juvenile arthritis.

Authors:  J E McDonagh; K L Shaw; J Prescott; F J Smith; R Roberts; N J Gray
Journal:  Pediatr Rheumatol Online J       Date:  2016-10-19       Impact factor: 3.054

4.  Untimely illness: When diagnosis does not match age-related expectations.

Authors:  Susan Kirkpatrick; Louise Locock; Albert Farre; Sara Ryan; Helen Salisbury; Janet E McDonagh
Journal:  Health Expect       Date:  2018-02-09       Impact factor: 3.377

5.  The impact of living with long-term conditions in young adulthood on mental health and identity: What can help?

Authors:  Ceri Wilson; Jennifer Stock
Journal:  Health Expect       Date:  2019-07-25       Impact factor: 3.377

6.  'It's like the bad guy in a movie who just doesn't die': a qualitative exploration of young people's adaptation to eczema and implications for self-care.

Authors:  D Ghio; I Muller; K Greenwell; A Roberts; A McNiven; S M Langan; M Santer
Journal:  Br J Dermatol       Date:  2019-07-28       Impact factor: 9.302

7.  Biographical accounts of the impact of fatigue in young people with sickle cell disease.

Authors:  Brenda Agyeiwaa Poku; Alison Pilnick
Journal:  Sociol Health Illn       Date:  2022-04-29

8.  Unsettling experiences: A qualitative inquiry into young peoples' narratives of diagnosis for common skin conditions in the United Kingdom.

Authors:  Abigail McNiven; Sara Ryan
Journal:  Front Psychol       Date:  2022-09-15

9.  Being as Normal as Possible: How Young People Ages 16-25 Years Evaluate the Risks and Benefits of Treatment for Inflammatory Arthritis.

Authors:  Ruth I Hart; Janet E McDonagh; Ben Thompson; Helen E Foster; Lesley Kay; Andrea Myers; Tim Rapley
Journal:  Arthritis Care Res (Hoboken)       Date:  2016-07-28       Impact factor: 4.794

  9 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.