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Open Access 01-12-2016 | Research article

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

Published in: Pediatric Rheumatology | Issue 1/2016

Abstract

Background

Despite 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.

Methods

Research 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.

Results

Parents 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.

Conclusions

Parents 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.

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Title: 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
Publication date: 01-12-2016
Publisher: BioMed Central
Published in: Pediatric Rheumatology / Issue 1/2016
Electronic ISSN: 1546-0096
DOI: https://doi.org/10.1186/s12969-016-0073-9

At a glance: The STEP trials

Springer Medicine

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

Abstract

Background

Methods

Results

Conclusions

At a glance: The STEP trials

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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