Literature DB >> 11478541

Living a 'normal' life: young people coping with thalassaemia major or sickle cell disorder.

K Atkin1, W I Ahmad.   

Abstract

This qualitative paper explores the strategies and resources young people use to cope with sickle cell disorder or thalassaemia major, two haemoglobin disorders with serious implications for health and survival. By focusing on coping strategies, we explore how young people attempt to take control over their lives. The respondents, largely of South Asian and African Caribbean origin, aged between 10 and 19 years, valued maintaining a normal' life and struggled to achieve this normalcy. Strategies were employed to minimise difference from peers but these strategies remained vulnerable. Coping occurred in a dynamic space, involving negotiation and engagement with both personal and structural factors. Threats to normalcy did not always reside in the condition; life transitions, changes in social relationships and racist. disablist or sexist marginalisation also threatened coping strategies.

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Year:  2001        PMID: 11478541     DOI: 10.1016/s0277-9536(00)00364-6

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  27 in total

1.  Successful Aging with Sickle Cell Disease: Using Qualitative Methods to Inform Theory.

Authors:  Coretta M Jenerette; Gloria Lauderdale
Journal:  J Theory Constr Test       Date:  2008-04-01

2.  Revealing the hidden agency of children in a clinical setting.

Authors:  Christine Dedding; Ria Reis; Bart Wolf; Anita Hardon
Journal:  Health Expect       Date:  2014-03-11       Impact factor: 3.377

3.  A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs.

Authors:  Li Ping Wong; Elizabeth George; Jin-Ai Mary Anne Tan
Journal:  J Community Genet       Date:  2011-02-24

4.  Managing the need to tell: Triggers and strategic disclosure of thalassemia major in Singapore.

Authors:  Neha Kumar; Erin Turbitt; Barbara B Biesecker; Ilana M Miller; Breana Cham; Katherine C Smith; Rajiv N Rimal
Journal:  Am J Med Genet A       Date:  2019-03-01       Impact factor: 2.802

5.  Coping and health service utilisation in a UK study of paediatric sickle cell pain.

Authors:  K A Anie; A Steptoe; S Ball; M Dick; B M Smalling
Journal:  Arch Dis Child       Date:  2002-05       Impact factor: 3.791

6.  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

7.  "What I got to go through": normalization and HIV-positive adolescents.

Authors:  Morgan M Philbin
Journal:  Med Anthropol       Date:  2014

8.  Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research.

Authors:  Marsha J Treadwell; Kathryn Hassell; Roger Levine; San Keller
Journal:  Clin J Pain       Date:  2014-10       Impact factor: 3.442

9.  Health related quality of life in Middle Eastern children with beta-thalassemia.

Authors:  Giovanni Caocci; Fabio Efficace; Francesca Ciotti; Maria Grazia Roncarolo; Adriana Vacca; Eugenia Piras; Roberto Littera; Raji Suleiman Dawood Markous; Gary Stephen Collins; Fabio Ciceri; Franco Mandelli; Sarah Marktel; Giorgio La Nasa
Journal:  BMC Blood Disord       Date:  2012-06-22

10.  Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school.

Authors:  Simon M Dyson; Karl Atkin; Lorraine A Culley; Sue E Dyson; Hala Evans
Journal:  Sociol Health Illn       Date:  2011-03
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