Literature DB >> 20616181

Parents' experiences one year on from their child's hematopoietic stem cell transplant for primary immunodeficiency.

Elizabeth McDowell1, Penny Titman, Sarah Davidson.   

Abstract

This study explored parental experience one year after hematopoietic stem cell transplant for primary immunodeficiency. Eight parents whose child had undergone transplant were interviewed one year after their child's transplant. Transcripts were analysed using interpretative phenomenological analysis. Four themes emerged: parents' paradoxical existence within an 'abnormal normality'; isolation felt by parents; gender differences between mothers and fathers; and the 'positive growth' parents attribute to their experience. As well as describing stressful or traumatic experiences they identified aspects of post-traumatic growth. The methodology used allowed contrasting experiences to emerge and highlights the importance of follow-up for parents as well as children.

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Year:  2010        PMID: 20616181     DOI: 10.1177/1359105309359331

Source DB:  PubMed          Journal:  J Health Psychol        ISSN: 1359-1053


  4 in total

Review 1.  Posttraumatic growth in parents and pediatric patients.

Authors:  Joseph A Picoraro; James W Womer; Anne E Kazak; Chris Feudtner
Journal:  J Palliat Med       Date:  2014-01-20       Impact factor: 2.947

Review 2.  Life with a Primary Immune Deficiency: a Systematic Synthesis of the Literature and Proposed Research Agenda.

Authors:  Morgan N Similuk; Angela Wang; Michael J Lenardo; Lori H Erby
Journal:  J Clin Immunol       Date:  2016-02-12       Impact factor: 8.317

3.  Health-Related Quality of Life and Emotional Health in X-Linked Carriers of Chronic Granulomatous Disease in the United Kingdom.

Authors:  Alexandra C Battersby; Helen Braggins; Mark S Pearce; Fiona McKendrick; Mari Campbell; Siobhan Burns; Catherine M Cale; David Goldblatt; Andrew R Gennery
Journal:  J Clin Immunol       Date:  2019-03-13       Impact factor: 8.317

4.  Impact of Primary Immunodeficiency Diseases on the Life Experiences of Patients in Malaysia From the Caregivers' Perspective: A Qualitative Study.

Authors:  Ruwaydah Ahmed Meelad; Intan Juliana Abd Hamid; Ilie Fadzilah Hashim; Zarina Thasneem Zainudeen; Firdaus Farhani Abu Bakar; Fahisham Taib; Norsarwany Mohamad; Ernest Mangantig; Intan Hakimah Ismail; Amir Hamzah Abdul Latiff; Lokman Mohd Noh
Journal:  Front Pediatr       Date:  2022-03-31       Impact factor: 3.418

  4 in total

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