Narrative as re-fusion: Making sense and value from sickle cell and thalassaemia trait

Young people develop new behaviours and redefine their identities during health transitions when they move from paediatric to adult healthcare environments. Their identities help to guide their health‐related actions in response to life changes. Young people's health is increasingly recognised as important, yet we lack understanding of how health transitions shape identities and how they relate to other transitions to adulthood. We conducted a longitudinal interview study with young people with sickle cell disease to explore how young people define new identities as they transition to adulthood. We show how ‘disciplining at a distance’ via healthcare self‐management discourses and neoliberal norms governing adolescence play out in the tensions participants encounter when they are crafting new identities. Health transitions involve struggles to negotiate competing demands for self‐discipline. It is crucial to create enabling spaces for young people to protect their health while still developing identities that help them achieve life goals.

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“…Atkin and Ahmad , Dyson et al . , , ) there is a paucity of research into the lived experience of sickle cell (Dyson ).…”

Section: Complex Transitions and Identity Workmentioning

confidence: 99%

Transitions to adulthood: self‐governance and disciplining in the making of patient citizens

Renedo

Miles

Marston

2019

Sociology Health & Illness

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“…It is commonly characterised by chronic fatigue and unpredictable and episodic acute painful episodes/crises (Poku et al, 2018) that cause cumulative damage to multiple organ systems. Living with SCD can give rise to significant challenges, resulting from both symptoms and related psychosocial responses-stigma, shame, blame, social withdrawal and social exclusion (Atkin & Ahmad, 2001;Dyson et al, 2011Dyson et al, , 2016Poku et al, 2018Poku et al, , 2020. This article aims to develop new conceptual insights for understanding the biographical experiences of adolescents with SCD in Ghana regarding SCD-related fatigue.…”

Section: Introductionmentioning

confidence: 99%

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

Poku

Pilnick

2022

Sociology Health & Illness

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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.

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“…In addition to numerous research articles available on the Internet of varying quality (based on evidence) and relevance, there are numerous online accounts of SCT patients reporting a range of symptoms they believe to be caused by SCT but not recognized by their physicians. This may leave anyone with SCT worried and unresolved in how they interpret their symptoms and how they interact with family members and their wider community(41). A call for healthcare providers to stop ignoring reports of SCT related symptoms, was made at a recent symposium including people with the trait: Y us, nor will you use it to deny us health care .…”

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confidence: 99%

Incidental Findings of Sickle Cell Trait From an Everyday Diabetes Test: Should General Health Care Providers and Testing Centers Report, Retest, or Refer?

et al. 2020

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The A1C (HbA1c test) is increasingly used as a diagnostic and screening test for type 2 diabetes (T2DM). With an estimated 8.8% of adults globally having diabetes, effective screening, diagnosis, and monitoring is of major global importance (1). The biomarker of A1C refers to glycated hemoglobin A molecules and has gained prominence in the diagnosis of type 2 diabetes because it offers certain advantages over plasma glucose testing regimens (2). It is well established that some of the hundreds of hemoglobin (Hb) variants, including the clinically relevant HbS, HbE, HbC, and HbD (3,4) may interfere with the validity of A1C results. Thus, testing strategies and tools employing A1C should ideally identify variants when they are present. Incidental findings of Hb variants present several ethical challenges for laboratories, health care providers, patients, and their families. These challenges have, to date, received little attention. This article reviews some of the advantages of detecting sickle cell trait,

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Narrative as re-fusion: Making sense and value from sickle cell and thalassaemia trait

Cited by 6 publications

References 32 publications

Transitions to adulthood: self‐governance and disciplining in the making of patient citizens

Transitions to adulthood: self‐governance and disciplining in the making of patient citizens

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

Incidental Findings of Sickle Cell Trait From an Everyday Diabetes Test: Should General Health Care Providers and Testing Centers Report, Retest, or Refer?

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