Literature DB >> 12795543

Growing up and living with cystic fibrosis: everyday life and encounters with the health care and social services--a qualitative study.

Eva Gjengedal1, Tone Rustøen, Astrid K Wahl, Berit Rokne Hanesta.   

Abstract

The purpose of this qualitative study was to illuminate experiences of growing up and living with cystic fibrosis (CF). The patients' and their families' encounters with health care and social services were of particular interest. Four focus groups (adults with CF and parents of children with CF) were conducted. Three main themes emerged from the analysis: "From uncertainty to certainty," "A demanding but normal life," and "A wish for continuity, stability, and respect." As also documented by other studies on the chronically ill, normalization seems to be an important strategy, a strategy that seems not to be fully understood by the helpers.

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Year:  2003        PMID: 12795543     DOI: 10.1097/00012272-200304000-00007

Source DB:  PubMed          Journal:  ANS Adv Nurs Sci        ISSN: 0161-9268            Impact factor:   1.824


  9 in total

1.  Spirometry-related pain and distress in adolescents and young adults with cystic fibrosis: the role of acceptance.

Authors:  Annabelle Casier; Liesbet Goubert; Tine Vervoort; Marleen Theunis; Danielle Huse; Frans De Baets; Dirk Matthys; Geert Crombez
Journal:  Pain Res Manag       Date:  2013-08-28       Impact factor: 3.037

2.  Hoping to live a "normal" life whilst living with unpredictable health and fear of death: impact of cystic fibrosis on young adults.

Authors:  Lorraine Higham; Shenaz Ahmed; Mushtaq Ahmed
Journal:  J Genet Couns       Date:  2012-12-14       Impact factor: 2.537

3.  Parental perceptions of the outcome and meaning of normalization.

Authors:  Kathleen A Knafl; Blair G Darney; Agatha M Gallo; Denise B Angst
Journal:  Res Nurs Health       Date:  2010-04       Impact factor: 2.228

4.  Living with primary ciliary dyskinesia: a prospective qualitative study of knowledge sharing, symptom concealment, embarrassment, mistrust, and stigma.

Authors:  Simon Whalley; I C McManus
Journal:  BMC Pulm Med       Date:  2006-10-13       Impact factor: 3.317

5.  Perception of first respiratory infection with Pseudomonas aeruginosa by people with cystic fibrosis and those close to them: an online qualitative study.

Authors:  Sally C Palser; Oliver C Rayner; Paul A Leighton; Alan R Smyth
Journal:  BMJ Open       Date:  2016-12-28       Impact factor: 2.692

6.  The lived experience of adults with cystic fibrosis: what they would tell their younger selves about the gut.

Authors:  L Cave; L J Milnes
Journal:  J Hum Nutr Diet       Date:  2019-11-25       Impact factor: 3.089

7.  A "pretty normal" life: a qualitative study exploring young people's experience of life with bronchiectasis.

Authors:  Julie Blamires; Annette Dickinson; El Shadan Tautolo; Catherine A Byrnes
Journal:  Int J Qual Stud Health Well-being       Date:  2021-12

8.  At the edge of vulnerability--lived experience of parents of children with cerebral palsy going through surgery.

Authors:  Anne Solveig Iversen; Marit Graue; Målfrid Råheim
Journal:  Int J Qual Stud Health Well-being       Date:  2013-02-06

9.  Living with cystic fibrosis - a qualitative study of a life coaching intervention.

Authors:  Karin Bæk Knudsen; Kirsten Arntz Boisen; Terese Lea Katzenstein; Laust Hvas Mortensen; Tacjana Pressler; Marianne Skov; Mary Jarden
Journal:  Patient Prefer Adherence       Date:  2018-04-19       Impact factor: 2.711

  9 in total

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