Literature DB >> 21890716

Parents' emotional and social experiences of caring for a child through cleft treatment.

Pauline A Nelson1, Susan A Kirk, Ann-Louise Caress, Anne-Marie Glenny.   

Abstract

Little is known about the experiences of parents caring for a child through long-term treatment for cleft lip and/or cleft palate. We conducted in-depth interviews with 35 parents with children between the ages of 20 weeks and 21 years to explore experiences across the treatment program. We analyzed the data using a constructivist grounded theory approach and present in detail in this article one subcategory from the analysis: managing emotions. Throughout childhood and adolescence, parents experienced conflicting emotions about their child's impairment, uncertainty about cleft treatment, and stigmatizing attitudes. Although parents attempted to manage emotional tensions by pursuing cleft treatments, the interventions could themselves be a source of conflict for them. We suggest that routine assessment of parents' emotional and social well-being should be included in cleft treatment programs, and access to psychosocial support made available.

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Year:  2011        PMID: 21890716     DOI: 10.1177/1049732311421178

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


  17 in total

1.  The impact of participation in genetic research for families with cleft lip with and without cleft palate: a qualitative study.

Authors:  Lynley J Donoghue; Margaret A Sahhar; Ravi Savarirayan; Supriya Raj; Nicky M Kilpatrick; Laura E Forrest
Journal:  J Community Genet       Date:  2014-02-06

2.  A Qualitative Study to Explore the Views and Attitudes towards Prenatal Testing in Adults Who Have Muenke Syndrome and their Partners.

Authors:  Julie Phipps; Heather Skirton
Journal:  J Genet Couns       Date:  2017-03-22       Impact factor: 2.537

3.  Oral health-related quality of life in patients with cleft lip and/or palate or Robin sequence.

Authors:  D Payer; M Krimmel; S Reinert; B Koos; H Weise; C Weise
Journal:  J Orofac Orthop       Date:  2022-07-19       Impact factor: 2.341

4.  Falling through the gap: Dental treatment experiences of patients affected by cleft lip and/or palate.

Authors:  N M Stock; N D Sharratt; J Heath; D Nankivell; A Martindale; M Ridley; A Ahmed; A McMullin; C Cunniffe
Journal:  Br Dent J       Date:  2018-08-03       Impact factor: 1.626

Review 5.  Educational paper: parenting a child with a disfiguring condition-how (well) do parents adapt?

Authors:  Willem H Leemreis; Jolanda M E Okkerse; Peter C J de Laat; Gerard C Madern; Léon N A van Adrichem; Frank Verhulst; Arnold P Oranje
Journal:  Eur J Pediatr       Date:  2013-06-18       Impact factor: 3.183

6.  Coping With Cleft: A Conceptual Framework of Caregiver Responses to Nasoalveolar Molding.

Authors:  Lacey Sischo; Hillary L Broder; Ceib Phillips
Journal:  Cleft Palate Craniofac J       Date:  2014-09-16

7.  "Concurrent Ropes and Ladders": Mapping and Conceptualizing the Emotional Loss Experience of Parents Following Pediatric Acquired Brain Injury.

Authors:  Einat Yehene; Pnina Steinberg; Maya Gerner; Amichai Brezner; Jana Landa
Journal:  Qual Health Res       Date:  2021-05-24

8.  A recurring rollercoaster ride: a qualitative study of the emotional experiences of parents of children with juvenile idiopathic arthritis.

Authors:  Oralia Gómez-Ramírez; Michele Gibbon; Roberta Berard; Roman Jurencak; Jayne Green; Lori Tucker; Natalie Shiff; Jaime Guzman
Journal:  Pediatr Rheumatol Online J       Date:  2016-03-09       Impact factor: 3.054

9.  "I smile, but Without Showing My Teeth": The Lived Experience of Cleft, Lip, and Palate in Adults.

Authors:  Asgjerd Litleré Moi; Harald Gjengedal; Kari Lybak; Hallvard Vindenes
Journal:  Cleft Palate Craniofac J       Date:  2020-04-30

10.  Development of an implementation intention-based intervention to change children's and parent-carers' behaviour.

Authors:  Karen Davies; Christopher J Armitage; Yin-Ling Lin; James Munro; Tanya Walsh; Peter Callery
Journal:  Pilot Feasibility Stud       Date:  2017-07-17
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