Literature DB >> 21890712

"This is the best fatal illness that you can have": contrasting and comparing the experiences of parenting youth with cystic fibrosis and congenital heart disease.

Fiona J Moola1.   

Abstract

Despite the important instrumental and emotional role that parents play in the lives of children with cystic fibrosis (CF) and congenital heart disease (CHD), qualitative researchers have not examined the similarities and differences between caregivers' experiences. Informed by thematic analysis, in this qualitative study I explored what it is like to care for a child with a chronic illness from the perspective of CF and CHD parents at a children's hospital in Canada. Pediatric caregiver stress was qualitatively different between CF and CHD parents, whereas temporal dilemmas were unique sources of stress for CF parents only. To alleviate stress, all parents drew on a three-way, interrelated process to comprehend their child's illness and acquire perspective. By opening up the social worlds of parents, I illuminate important similarities and differences in the caregiving experience of parents of youth with CF and CHD, and offer novel contributions to the literature.

Entities:  

Mesh:

Year:  2011        PMID: 21890712     DOI: 10.1177/1049732311421486

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


  5 in total

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Authors:  Elisabeth Daae; Kristin Billaud Feragen; Jan C Sitek; Charlotte von der Lippe
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2.  Higher mobility scores in patients with cystic fibrosis are associated with better lung function.

Authors:  Aneesha Thobani; Jessica A Alvarez; Shaina Blair; Kaila Jackson; Eric R Gottlieb; Seth Walker; Vin Tangpricha
Journal:  Pulm Med       Date:  2015-02-18

3.  Can positive parenting program (Triple P) be useful to prevent child maltreatment?

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Journal:  Indian J Psychiatry       Date:  2018 Jul-Sep       Impact factor: 1.759

4.  A meta-ethnographic study of fathers' experiences of caring for a child with a life-limiting illness.

Authors:  Gianina-Ioana Postavaru; Helen Swaby; Rabbi Swaby
Journal:  Palliat Med       Date:  2020-12-18       Impact factor: 4.762

5.  Signs of deterioration in infants discharged home following congenital heart surgery in the first year of life: a qualitative study.

Authors:  Jenifer Tregay; Katherine L Brown; Sonya Crowe; Catherine Bull; Rachel L Knowles; Liz Smith; Jo Wray
Journal:  Arch Dis Child       Date:  2016-01-28       Impact factor: 3.791

  5 in total

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