Literature DB >> 27693084

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents' experiences.

Gemma Heath1, Albert Farre2, Karen Shaw3.   

Abstract

OBJECTIVE: To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services.
METHODS: Five databases were systematically searched for qualitative articles examining parents' views and experiences of their child's healthcare transition. Papers were quality assessed and thematically synthesised.
RESULTS: Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child's progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child's readiness, wellness, competence and long-term condition impacted on the child' progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child's growing independence.
CONCLUSION: Parents can be key facilitators of their child's healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. PRACTICE IMPLICATIONS: Interventions are needed which address the transitional care needs of parents as well as young people.
Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Entities:  

Keywords:  Child health; Long-term conditions; Parents; Qualitative research; Transition

Mesh:

Year:  2016        PMID: 27693084     DOI: 10.1016/j.pec.2016.08.011

Source DB:  PubMed          Journal:  Patient Educ Couns        ISSN: 0738-3991


  27 in total

Review 1.  Children's complex care needs: a systematic concept analysis of multidisciplinary language.

Authors:  Maria Brenner; Claire Kidston; Carol Hilliard; Imelda Coyne; Jessica Eustace-Cook; Carmel Doyle; Thelma Begley; Michael J Barrett
Journal:  Eur J Pediatr       Date:  2018-08-08       Impact factor: 3.183

2.  An Internet support group for parents of children with neurofibromatosis type 1: a qualitative analysis.

Authors:  Staci Martin; Kari L Struemph; Alyssa Poblete; Mary Anne Toledo-Tamula; Robin Lockridge; Marie Claire Roderick; Pamela Wolters
Journal:  J Community Genet       Date:  2018-03-02

3.  Genetic Testing in the Pediatric Nephrology Clinic: Understanding Families' Experiences.

Authors:  Suzanne M Nevin; Jordana McLoone; Claire E Wakefield; Sean E Kennedy; Hugh J McCarthy
Journal:  J Pediatr Genet       Date:  2020-12-15

4.  Facilitating transition of young people with long-term health conditions from children's to adults' healthcare services - implications of a 5-year research programme.

Authors:  Allan Colver; Tim Rapley; Jeremy R Parr; Helen McConachie; Gail Dovey-Pearce; Ann Le Couteur; Janet E McDonagh; Caroline Bennett; Gregory Maniatopoulos; Mark S Pearce; Debbie Reape; Nichola Chater; Helena Gleeson; Luke Vale
Journal:  Clin Med (Lond)       Date:  2020-01       Impact factor: 2.659

5.  Transition from pediatric to adult medical care - A survey in young persons with inflammatory bowel disease.

Authors:  Antje Timmer; Jenny Peplies; Max Westphal; Birgit Kaltz; Antje Ballauff; Martin Claßen; Martin W Laass; Sibylle Koletzko
Journal:  PLoS One       Date:  2017-05-18       Impact factor: 3.240

6.  Daily life participation in childhood chronic disease: a qualitative study on the child's and parent's perspective.

Authors:  Merel M Nap-van der Vlist; Emma E Berkelbach van der Sprenkel; Linde N Nijhof; Martha A Grootenhuis; Cornelis K van der Ent; Joost F Swart; Annet van Royen-Kerkhof; Martine van Grotel; Elise M van de Putte; Sanne L Nijhof; Marijke C Kars
Journal:  BMJ Paediatr Open       Date:  2021-05-18

7.  Mechanisms of impact and experiences of a person-centred transition programme for adolescents with CHD: the Stepstones project.

Authors:  Markus Saarijärvi; Lars Wallin; Philip Moons; Hanna Gyllensten; Ewa-Lena Bratt
Journal:  BMC Health Serv Res       Date:  2021-06-10       Impact factor: 2.655

8.  "We Sometimes Hold on to Ours" - Professionals' Views on Factors that both Delay and Facilitate Transition to Adult Care.

Authors:  Susie Aldiss; Hilary Cass; Judith Ellis; Faith Gibson
Journal:  Front Pediatr       Date:  2016-11-24       Impact factor: 3.418

9.  Chronological age when healthcare transition skills are mastered in adolescents/young adults with inflammatory bowel disease.

Authors:  Natalie Stollon; Yi Zhong; Maria Ferris; Suneet Bhansali; Brian Pitts; Eniko Rak; Maureen Kelly; Sandra Kim; Miranda A L van Tilburg
Journal:  World J Gastroenterol       Date:  2017-05-14       Impact factor: 5.742

10.  What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study.

Authors:  Suzanne Parsons; Wendy Thomson; Katharine Cresswell; Bella Starling; Janet E McDonagh
Journal:  Pediatr Rheumatol Online J       Date:  2017-07-03       Impact factor: 3.054

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