Biographical accounts of the impact of fatigue in young people with sickle cell disease
Bibliographic Data
| ID | 2250078 |
|---|---|
| Authors | Brenda Agyeiwaa Poku (0000-0002-2265-7041, School of Sociology and Social Policy University of Nottingham Nottingham UK, corresponding author), Alison Pilnick (0000-0003-0987-8760, School of Sociology and Social Policy University of Nottingham Nottingham UK) |
| Year | 2022 |
| Volume | 44 |
| Issue | 6 |
| Pages | 1027-1046 |
| Publication date | 2022-06-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Sociology of Health & Illness (JOURNAL) |
| Journal identifiers | ISSN: 0141-9889 • E-ISSN: 1467-9566 |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/1467-9566.13477 |
| PMID | 35488415 |
| OpenAlex | W4225142581 |
| Language | EN |
| Citations received | 10 |
| References cited | 60 |
Children and young people (CYP) with sickle cell disease (SCD) are a 'missing voice' in the debate on biography and sociology of chronic illness, meaning we know little about the social consequences of the illness for CYP. This paper examines the meaning of fatigue (a common symptom) for adolescents with SCD. Analysing 24 in-depth interviews with adolescents aged 12-17 years in Ghana, we draw on the distinction proposed by Bury (1988) between 'meanings as significance' and 'meanings as consequence' to examine biographical aspects of fatigue. We argue that concepts of 'biographical disruption' and 'normal illness' do not easily accommodate the experience of CYP with congenital chronic illnesses like SCD, as their sense of (un)disruption and normality/continuity is contextualised relative to normative expectations about what it is to be a young person. At biographical transition points, illness/symptoms present from birth may evolve, shift and become experienced as 'new', 'different', or 'non-normal'. They may become restrictive rather than continuous or disruptive. These experiences are influenced primarily by normative biographical expectations and the pursuit of identity affirmations. We propose that biographical restriction, biographical enactment, biographical abandonment and biographical reframing are more relevant concepts for understanding the experiences of CYP living with SCD
Abandonment (legal · Biography · Cognitive reframing · Developmental psychology · Disease · Epistemology · Health care · Identity (music · Meaning (existential · Normality · Normative · Psychotherapist · Sociology · Sociology of health and illness · Hemoglobinopathies and Related Disorders · History · Iron Metabolism and Disorders · Medicine · Prenatal Screening and Diagnostics · Psychology · Social Psychology
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Research knowledge transfer to improve the care and support of adolescents with sickle cell disease in Ghana
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Chronic Concealment and Awareness in the Affective Worlds of Young People Living With Chronic Illness
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Biographical accounts of the impact of fatigue in young people with sickle cell disease
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| Citations per year | 2.5 |
|---|---|
| Citation span | 2022 - 2026 (5) |
| Highly cited | No |