Literature DB >> 23314519

Detached, distraught or discerning? Fathers of adolescents with chronic illness: a review of the literature.

Henry Goldstein1, Christina Akré, Richard E Bélanger, Joan-Carles Suris.   

Abstract

Parenting a child with chronic disease provides a unique set of challenges for both mothers and fathers throughout all phases of the illness. However, fathers of these children are under-represented in existing research. This review focuses on the fathers of children with chronic disease included in 44 original articles. We address the challenges to the father's role as breadwinner, leader and strength-giver in the family. Three time-periods describe the obstacles fathers tackle when parenting children with chronic disease: a) diagnosis and short-term, characterized by distress, isolation and uncertainty; b) the mastery period, characterized by the struggle to establish routine and by support and spirituality; and c) the long-term, characterized by relationship and personality change, worries and bereavement. Overall, whilst current research has revealed some key themes pertaining to fathers of children with chronic disease, further studies are required to foster the development of support mechanisms for the specific needs of these fathers.

Entities:  

Mesh:

Year:  2013        PMID: 23314519     DOI: 10.1515/ijamh-2013-0018

Source DB:  PubMed          Journal:  Int J Adolesc Med Health        ISSN: 0334-0139


  6 in total

1.  Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents.

Authors:  Nina A Zeltner; Markus A Landolt; Matthias R Baumgartner; Sarah Lageder; Julia Quitmann; Rachel Sommer; Daniela Karall; Chris Mühlhausen; Andrea Schlune; Sabine Scholl-Bürgi; Martina Huemer
Journal:  JIMD Rep       Date:  2016-08-13

2.  Development and Psychometric Evaluation of the MetabQoL 1.0: A Quality of Life Questionnaire for Paediatric Patients with Intoxication-Type Inborn Errors of Metabolism.

Authors:  Nina A Zeltner; Matthias R Baumgartner; Aljona Bondarenko; Regina Ensenauer; Daniela Karall; Stefan Kölker; Chris Mühlhausen; Sabine Scholl-Bürgi; Eva Thimm; Julia Quitmann; Peter Burgard; Markus A Landolt; Martina Huemer
Journal:  JIMD Rep       Date:  2017-03-01

Review 3.  Anxiety in Children with Cystic Fibrosis and Their Parents: A Systematic Review.

Authors:  Hayley Kimball; Tonia Douglas; Matthew Sanders; Vanessa E Cobham
Journal:  Clin Child Fam Psychol Rev       Date:  2021-03-04

4.  Key patient-reported outcomes in children and adolescents with intoxication-type inborn errors of metabolism: an international Delphi-based consensus.

Authors:  Martina Huemer; Markus A Landolt; Florin Bösch; Nina A Zeltner; Matthias R Baumgartner
Journal:  Orphanet J Rare Dis       Date:  2022-01-29       Impact factor: 4.123

5.  Caregiver burden, and parents' perception of disease severity determine health-related quality of life in paediatric patients with intoxication-type inborn errors of metabolism.

Authors:  Florin Bösch; Markus A Landolt; Matthias R Baumgartner; Susana Fernandez; Patrick Forny; Matthias Gautschi; Sarah C Grünert; Johannes Häberle; Carolina Horvath; Daniela Karall; Danila Lampis; Marianne Rohrbach; Sabine Scholl-Bürgi; Gabor Szinnai; Martina Huemer
Journal:  Mol Genet Metab Rep       Date:  2022-05-06

6.  When Control Exacerbates Distress: A Qualitative Study Exploring the Experiences of Hong Kong Chinese Parents in Caring for a Child with Asthma.

Authors:  Yuen-Yu Chong; Doris Leung; Yim-Wah Mak
Journal:  Int J Environ Res Public Health       Date:  2018-06-30       Impact factor: 3.390

  6 in total

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