Evidence map›Paper›PMID 32789897›Full record

ArticleChild: care, health and development2020

Swedish parents' experiences of their role in treatment for children with congenital limb reduction deficiency: Decision-making and treatment support.

Lis Sjöberg, Liselotte Hermansson, Helen Lindner, Carin Fredriksson

Open access · hybridAbstract read
In one paragraph

Article in Child: care, health and development, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
0.4field-weighted citation impact, top 40% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed, 7 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors at 1 institution in 1 country.

Lis SjöbergSchool of Health Sciences, Örebro University, Örebro, Sweden.ORCID 0000-0002-7670-0885
Liselotte HermanssonSchool of Health Sciences, Örebro University, Örebro, Sweden.ORCID 0000-0003-4247-2236
Helen LindnerSchool of Health Sciences, Örebro University, Örebro, Sweden.ORCID 0000-0002-5567-9431
Carin FredrikssonSchool of Health Sciences, Örebro University, Örebro, Sweden.ORCID 0000-0002-9188-7510
Örebro University · SE

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundParents 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.

methodsA 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.

resultsTwo 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.

conclusionsThis 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.

Indexed as

Decision MakingAdultChildChild, PreschoolFemaleHumansLimb Deformities, CongenitalMaleMiddle AgedParentsProfessional-Family RelationsQualitative ResearchSwedenfamily-centred servicepaediatric rehabilitationparental rolequalitative

Identifiers

PMID32789897
PMCPMC7589220
OpenAlexW3049212059

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.