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Swedish parents' experiences of their role in treatment for children with congenital limb reduction deficiency: Decision‐making and treatment support
Örebro University, School of Health Sciences. (REAL)ORCID iD: 0000-0002-7670-0885
Örebro University, School of Health Sciences. Department of Prosthetics and Orthotics, University Health Care Research Center. (REAL)ORCID iD: 0000-0003-4247-2236
Örebro University, School of Health Sciences.ORCID iD: 0000-0002-5567-9431
Örebro University, School of Health Sciences.ORCID iD: 0000-0002-9188-7510
2020 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 46, no 6, p. 723-732Article in journal (Refereed) Published
Abstract [en]

Background: Parents of children with congenital limb reduction deficiency have an essential role in making treatment decisions during their child's first years of life. Treatment options usually concern surgical and/or prosthetic treatment. To tailor treatment options to fit different family values and priorities, the family‐centred approach indicates the importance of understanding the parental role in partnership with health care professionals. The aim of this study was to describe parents' experiences of their role in decision‐making and treatment for children with congenital limb reduction deficiency.

Methods: A descriptive design with a qualitative approach was used. Semi‐structured interviews were conducted with 17 parents (12 mothers and 5 fathers) of children with upper and/or lower limb deficiency (mean age 5.9 years). The interview data were analysed using qualitative content analysis with an inductive approach.

Results: Two major themes emerged from the data. The first theme, being a decision maker for someone else, was described as an ambivalent parental role, including collaboration within the family and with health care professionals. The second theme, becoming and being a treatment supporter in the child's everyday life, was made up of four categories: being a supporter of the child in everyday activities, mentoring the child to handle encounters with others, becoming a coordinator of information and being an ‘extended arm’ of the health care provision for the child.

Conclusions: This study enhances our understanding of the parental role in decision‐making and treatment for children with congenital limb reduction deficiency. The results may contribute to the continued development of the family‐centred service approach by providing guidelines for treatment programmes, with the goal of improving decision support and broadening the support for parents during treatment for these children.

Place, publisher, year, edition, pages
John Wiley & Sons, 2020. Vol. 46, no 6, p. 723-732
Keywords [en]
family-centred service, paediatric rehabilitation, parental role, qualitative
National Category
Occupational Therapy
Research subject
Occupational therapy
Identifiers
URN: urn:nbn:se:oru:diva-84974DOI: 10.1111/cch.12802ISI: 000560146800001PubMedID: 32789897Scopus ID: 2-s2.0-85089484429OAI: oai:DiVA.org:oru-84974DiVA, id: diva2:1459354
Note

Funding Agencies:

Faculty of Medicine and Health, Örebro University, Örebro, Sweden  

Research Committee, Region Örebro County, Sweden  

Norrbacka-Eugenia Foundation, Stockholm, Sweden 

Available from: 2020-08-19 Created: 2020-08-19 Last updated: 2024-03-04Bibliographically approved
In thesis
1. Healthcare interventions in children with congenital limb reduction deficiency: long term outcomes and experiences of decisions made during childhood
Open this publication in new window or tab >>Healthcare interventions in children with congenital limb reduction deficiency: long term outcomes and experiences of decisions made during childhood
2021 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to describe experiences and long-term outcomes of healthcare interventions for children with congenital limb reduction deficiency (CLRD). 

The four studies included were conducted with descriptive designs. Semi-structured interviews were carried out with parents (n=17) in study I and adolescents (n=10) in study III. Data were analyzed using a qualitativecontent analysis (study I) and a phenomenographic approach (study III). Study II was conducted with a prospective case-control design, where data from cases (n=9) and controls (n= 27) concerning prosthesis use and skills were collected for 17 years and analyzed with independentsamples tests. In study IV, a cross-sectional survey was conducted, using a study-specific questionnaire, analyzed with chi-square tests and descriptive statistics. 

The involvement of parents in decision-making and treatment for their child with a CLRD generates several roles derived from the child’s and family’s needs, with tasks assigned to the parents by HCPs. Concerning young children’s development of prosthetic skills and prosthesis use over time, our results show no additional advantages from fitting a myoelectric hand prosthesis before the age of 2½ years. The treatment received during childhood had shaped the adolescents by creating opportunities, allowing them to choose their own paths, and enabling a sense of belonging in a context. The majority of children with CLRD will, as adults, have a life situation with opportunities for education, employment, and social life, a life situation that corresponds well to the Swedish population as a whole.

This thesis shows that decisions made at an early stage for the treatment of children with CLRD contribute to physical and social skills that shape the children through their later choices and appear to be important for their future life situation. Despite different constraints people with CLRD have similar lives to their peers.

Place, publisher, year, edition, pages
Örebro: Örebro University, 2021. p. 93
Series
Örebro Studies in Medicine, ISSN 1652-4063 ; 243
Keywords
Childhood, daily occupation, decision-making, family-centered service, life situation, limb deficiency, myoelectric prosthesis, parental role, rehabilitation, surgery
National Category
Other Health Sciences
Identifiers
urn:nbn:se:oru:diva-92051 (URN)9789175293943 (ISBN)
Public defence
2021-09-10, Örebro universitet, Forumhuset, Hörsal F, Fakultetsgatan 1, Örebro, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2021-06-01 Created: 2021-06-01 Last updated: 2024-03-04Bibliographically approved

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Sjöberg, LisHermansson, LiselotteLindner, Helen YFredriksson, Carin

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