Literature DB >> 20442344

The stories of young people living with a liver transplant.

Rachel M Taylor1, Linda S Franck, Anil Dhawan, Faith Gibson.   

Abstract

Adolescence is a difficult time for those with chronic illness because of the constraints of the illness on developmental tasks. Little is known about the impact liver transplantation has during adolescence. In this study we aimed to explore, in their own words, young people's lived experience of life after transplantation. We used semistructured interviews to collect narrative data, and used a purposive sample of 14 young people in early, middle, and late adolescence, transplanted for a range of chronic, acute, and metabolic liver diseases. We analyzed the transcripts using a framework in which analysis progresses through a five-stage process of matrices. Six main themes emerged, related to relationships, affect on schooling, tiredness and fatigue, acceptance of the burden of medication, communication with health professionals, and view of the future. These findings add new insight into the transplantation experience, which might lead to improvements in care and help direct further research in this important aspect of clinical care.

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Year:  2010        PMID: 20442344     DOI: 10.1177/1049732310368405

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  11 in total

1.  Parental assessment of adolescent quality of life: can it replace self-assessment?

Authors:  Rachel M Taylor; Andy Grieve; Faith Gibson; Anil Dhawan; Linda S Franck
Journal:  Qual Life Res       Date:  2011-04-06       Impact factor: 4.147

2.  Posttraumatic stress and medication adherence in pediatric transplant recipients.

Authors:  Sarah Duncan-Park; Lara Danziger-Isakov; Brian Armstrong; Nikki Williams; Jonah Odim; Eyal Shemesh; Stuart Sweet; Rachel Annunziato
Journal:  Am J Transplant       Date:  2021-12-20       Impact factor: 8.086

3.  Receiving enzyme replacement therapy for a lysosomal storage disorder: a preliminary exploration of the experiences of young patients and their families.

Authors:  R Freedman; M Sahhar; L Curnow; J Lee; H Peters
Journal:  J Genet Couns       Date:  2013-03-28       Impact factor: 2.537

Review 4.  Post-transplant adjustment--the later years.

Authors:  Emily M Fredericks; Nataliya Zelikovsky; Isabelle Aujoulat; Anna Hames; Jo Wray
Journal:  Pediatr Transplant       Date:  2014-09-13

5.  Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes.

Authors:  Eve Namisango; Katherine Bristowe; Matthew J Allsop; Fliss E M Murtagh; Melanie Abas; Irene J Higginson; Julia Downing; Richard Harding
Journal:  Patient       Date:  2019-02       Impact factor: 3.883

6.  Peer Mentoring as an Avenue to Explore in Kidney Transplantation: Kidney Transplant Recipients' Perspectives on Peer Mentoring.

Authors:  Marie-Pascale Pomey; Fabián Ballesteros Gallego; Alya Affdal; Marie-Chantal Fortin
Journal:  Transplant Direct       Date:  2021-02-18

7.  Experiences and barriers to Health-Related Quality of Life following liver transplantation: a qualitative analysis of the perspectives of pediatric patients and their parents.

Authors:  David B Nicholas; Anthony R Otley; Rachel Taylor; Anil Dhawan; Susan Gilmour; Vicky Lee Ng
Journal:  Health Qual Life Outcomes       Date:  2010-12-22       Impact factor: 3.186

Review 8.  Measuring the burden of treatment for chronic disease: implications of a scoping review of the literature.

Authors:  Adem Sav; Asiyeh Salehi; Frances S Mair; Sara S McMillan
Journal:  BMC Med Res Methodol       Date:  2017-09-12       Impact factor: 4.615

9.  Health-Related Quality of Life after Pediatric Liver Transplantation: A Qualitative Analysis of the Perspectives of Health Care Providers.

Authors:  Mar Miserachs; David B Nicholas; Anthony R Otley; Vicky Lee Ng
Journal:  Can J Gastroenterol Hepatol       Date:  2017-06-20

10.  How do children and adolescents experience healthcare professionals? Scoping review and interpretive synthesis.

Authors:  Gail Davison; Martina Ann Kelly; Richard Conn; Andrew Thompson; Tim Dornan
Journal:  BMJ Open       Date:  2021-07-09       Impact factor: 2.692

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