Evidence map›Paper›PMID 26961237›Full record

ArticlePediatric rheumatology online journal2016

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

Oralia Gómez-Ramírez, Michele Gibbon, Roberta Berard, Roman Jurencak, Jayne Green, Lori Tucker, Natalie Shiff, Jaime Guzman

Open access · goldAbstract readMulticenter Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Pediatric rheumatology online journal, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
31citing papers in PubMed, 3 pooled it
5.8field-weighted citation impact, top 5% 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

31 citing papers in PubMed, 3 syntheses or guidelines pooled it, 50 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

8 authors at 6 institutions in 2 countries.

Oralia Gómez-RamírezDepartment of Anthropology, University of British Columbia, 6303 NW Marine Drive, Vancouver, British Columbia, V6T 1Z1, Canada.
Michele GibbonDivision of Rheumatology, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, K1H 8 L1, Canada.
Roberta BerardDepartment of Pediatrics, Western University and Children's Hospital, London Health Sciences Centre, 800 Commissioners Road East, London, Ontario, N6A 5 W9, Canada.
Roman JurencakDepartment of Pediatrics, University of Ottawa and Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, K1H 8 L1, Canada.
Jayne GreenBritish Columbia Children's Hospital, Room K4-116, 4480 Oak Street, Vancouver, British Columbia, V6H 3V4, Canada.
Lori TuckerDepartment of Pediatrics, University of British Columbia and British Columbia Children's Hospital, 4480 Oak Street, Vancouver, British Columbia, V6H 3V4, Canada.
Natalie ShiffDepartment of Pediatrics, University of Florida, and Department of Community Health and Epidemiology, University of Saskatchewan, 1600 Archer Road, Gainesville, Florida, USA.
Jaime GuzmanDepartment of Pediatrics, University of British Columbia and British Columbia Children's Hospital, 4480 Oak Street, Vancouver, British Columbia, V6H 3V4, Canada. jguzman@cw.bc.ca.
BC Children's Hospital · CAChildren's Hospital of Eastern Ontario · CALondon Health Sciences Centre · CAUniversity of British Columbia · CAUniversity of Florida · USUniversity of Ottawa · CA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundDespite the wealth of clinical research carried out in children with juvenile idiopathic arthritis (JIA), little is known about the emotional experiences of their parents. This article describes the predominant emotional experiences reported by parents of children with JIA in two Canadian cities.

methodsResearch participants included 15 experienced parents and 8 novice parents (<6 months since children's JIA diagnosis). Their children were 2 to 16 years old with various JIA categories. A qualitative dataset including audio recordings and verbatim transcripts of three focus groups, and written reports of 59 reciprocal interviews (parents interviewing each other) were examined by a multidisciplinary research team following a four-step qualitative analytical process.

resultsParents of children with JIA experienced recurrent mixed negative and positive emotions that varied over time. Between disease onset and diagnosis, mounting anxiety, fear and confusion were the predominant emotions. Shortly after diagnosis there were shock, disbelief, and fear, with a sense of having being blindsided by the disease. At times of disease quiescence there was hope and gratitude, but also fatigue and frustration with ongoing treatment and fear of flares. During periods of increasing or ongoing symptoms there was admiration and sympathy for the courageous way children coped with JIA, as well as sorrow and frustration for ongoing pain and limitations. There were at times, frustration and indignation with peers and teachers unable to understand the child's fluctuations in physical activity and schoolwork. Throughout the disease, parents felt an underlying anxiety and powerlessness.

conclusionsParents of children with JIA described complex emotional journeys akin to the recurring ups and downs of rollercoaster rides, instead of ordered emotional phases ending in resolution. This has implications for healthcare providers who need to be aware of the complexity of these emotional journeys to support parents more effectively, thereby helping improve patient outcomes.

Indexed as

Adaptation, PsychologicalParent-Child RelationsAdolescentAdultArthritis, JuvenileChildChild, PreschoolEmotionsFemaleFollow-Up StudiesHumansMaleParentsPlay and PlaythingsQuality of LifeRetrospective Studies

Identifiers

PMID26961237
PMCPMC4784365
OpenAlexW2293293086

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.