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Therapeutic metamorphosis: Findings from a grounded theory study of the impact of low-dose prophylaxis in children living with haemophilia in India.

التفاصيل البيبلوغرافية
العنوان: Therapeutic metamorphosis: Findings from a grounded theory study of the impact of low-dose prophylaxis in children living with haemophilia in India.
المؤلفون: T R; Haemophilia Treatment Centre, Aluva, India.; Samaritan College of Nursing, Pazhanganad, India., Thomas G; Haemophilia Treatment Centre, Aluva, India., Paul L; Haemophilia Treatment Centre, Aluva, India., Mathew S; Haemophilia Treatment Centre, Aluva, India., Biss T; Haemophilia Treatment Centre, Aluva, India.; Haemophilia Comprehensive Care Centre, Newcastle upon Tyne Hospitals NHS Trust, Newcastle upon Tyne, UK., Hanley JP; Haemophilia Treatment Centre, Aluva, India.; Haemophilia Comprehensive Care Centre, Newcastle upon Tyne Hospitals NHS Trust, Newcastle upon Tyne, UK., Narayana Pillai V; Haemophilia Treatment Centre, Aluva, India.
المصدر: Haemophilia : the official journal of the World Federation of Hemophilia [Haemophilia] 2020 Jul; Vol. 26 (4), pp. 615-621. Date of Electronic Publication: 2020 Jun 12.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: Blackwell Science Country of Publication: England NLM ID: 9442916 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1365-2516 (Electronic) Linking ISSN: 13518216 NLM ISO Abbreviation: Haemophilia Subsets: MEDLINE
أسماء مطبوعة: Original Publication: Osney Mead, Oxford, UK : Blackwell Science, [1994-
مواضيع طبية MeSH: Grounded Theory*, Hemophilia A/*drug therapy , Hemophilia A/*psychology , Parents/*psychology, Child ; Child, Preschool ; Educational Status ; Female ; Hemophilia A/prevention & control ; Humans ; India/epidemiology ; Interviews as Topic/methods ; Male ; Models, Theoretical ; Qualitative Research ; Quality of Life/psychology
مستخلص: Introduction: The clinical benefits of administering low-dose prophylaxis in children with haemophilia are well established. Qualitative research describing the impact of prophylaxis on quality of life is comparatively rare in this area.
Aim: The aim of this study was to investigate in children the experiences of living and becoming adjusted to haemophilia before prophylaxis, by collecting information directly from children and their parents or guardians. A further goal was to evaluate whether and how the use of low-dose prophylaxis impacts the disease experience.
Methods: A grounded theory design according to Strauss and Corbin was chosen for this study. The study was conducted in the Haemophilia Treatment Centre at Aluva, Kerala, India and involved nineteen participants (children, mothers, father and grandmothers) who were selected by theoretical sampling. Data were collected through audiotaped interviews, which included demographic and semi-structured interview questions. Data were coded and evolved into concepts and categories that lead to the emergence of theory.
Results: The study resulted in the construction of 'Theory of Therapeutic Metamorphosis'. It comprised two stages: stage of bondage (enduring hardships), experienced during the absence of prophylaxis or on-demand treatment and stage of freedom (deliverance/reductions, energized life/improvements and behaviour to seek prophylaxis) experienced during low-dose prophylaxis.
Conclusion: This study illustrates the challenges faced by children with haemophilia and their families and the positive impact of low-dose prophylaxis. Further prospective research studies are required to add to the growing knowledge in this area.
(© 2020 John Wiley & Sons Ltd.)
References: What are the signs and symptoms of Haemophilia? NHLBI July 13, 2013. Archived from the original on 17 September 2016. Retrieved 8 September 2016.
World Federation of Haemophilia report on the Annual Global Survey 2017 [Internet]. [Cited 2019 May 23]. http://www1.wfh.org/publications/files/pdf-1714.pdf.
What Is Hemophilia? Definition, Symptoms of Hemophilia A and B [Internet]. [cited 2019 May 26]. https://www.medicinenet.com/hemophilia/article.htm.
Wu R, Luke KH. The benefit of low dose prophylaxis in the treatment of hemophilia: a focus on China. Expert Rev Hematol. 2017;10(11):995-1004.
Sidharthan N, Sudevan R, Narayana Pillai V, et al. Low-dose prophylaxis for children with haemophilia in a resource-limited setting in south India-a clinical audit report. Haemophilia. 2017;23:e382.
Verma SP, Dutta TK, Mahadevan S, et al. A randomized study of very low-dose factor VIII prophylaxis in severe haemophilia - a success story from a resource limited country. Haemophilia. 2016;22(3):342-348.
Khair K, Meerabeau L, Gibson F. Self-management and skills acquisition in boys with haemophilia. Health Expect. 2015;18(5):1105-1113.
Perceptions of Men With Moderate to Severe Hemophilia Regarding the Management of Their Chronic Disorder and Utilization of Community-Based Support - Erik B. Rolstad, 2015 [Internet]. [cited 2019 May 27]. https://journals.sagepub.com/doi/full/10.1177/1557988314551360.
Potì S, Palareti L, Emiliani F, Rodorigo G, Valdrè L. The subjective experience of living with haemophilia in the transition from early adolescence to young adulthood: the effect of age and the therapeutic regimen. Int J Adolescence Youth. 2018;23(2):133-144.
Strauss A, Corbin JM. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Thousand Oaks, CA: Sage Publications Inc; 1990.
Cutter S, Molter D, Dunn S, et al. Impact of mild to severe hemophilia on education and work by US men, women, and caregivers of children with hemophilia B: the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study. Eur J Haematol. 2017;98(Suppl 86):18-24.
فهرسة مساهمة: Keywords: Haemophilia; grounded theory; low-dose prophylaxis; on-demand treatment; therapeutic metamorphosis
تواريخ الأحداث: Date Created: 20200613 Date Completed: 20210519 Latest Revision: 20210519
رمز التحديث: 20240829
DOI: 10.1111/hae.14053
PMID: 32530117
قاعدة البيانات: MEDLINE
الوصف
تدمد:1365-2516
DOI:10.1111/hae.14053