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Children with juvenile idiopathic arthritis: health-related quality of life and participation in healthcare encounters
Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Section of Physiotherapy.
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Growing up with Juvenile Idiopathic Arthritis (JIA) can be associated with functional limitations, feelings of being different, and an impaired health-related quality of life (HRQOL). Children’s and parents’ reports of child HRQOL may differ. Children report difficulties in communicating their problems to healthcare professionals and in participating at healthcare encounters. The overall aim of the thesis was to explore similarities and differences in how girls and boys with JIA and their parents reported child HRQOL, and to explore how children can be enabled to communicate their health concerns and participate at healthcare encounters.

Methods: Fifty-three children diagnosed with JIA (38 girls and 15 boys), with a median age of 14 years, and their parents, responded to three HRQOL questionnaires and a screening instrument for mental health. Twenty-three healthcare professionals from different professions in JIA teams participated in focus groups. Four children and two young adults diagnosed with JIA and four parents of children with JIA participated in 10 separate workshops. The focus groups and workshops were analysed using qualitative content analysis.

Results: No gender differences were found between girls’ and boys’ self-reported HRQOL and mental health, measured with the questionnaires. Girls reported their HRQOL and mental health better than their parents reported their child’s health in several sub-domains. Boys tended to report their HRQOL worse than their parents reported their child’s health. Children and parents reported the same child HRQOL with the disease specific HRQOL questionnaire.

The theme “Creating an enabling arena” illustrates how healthcare professionals face possibilities and challenges when enabling children to communicate and participate in healthcare encounters. Healthcare professionals, parents, and the healthcare system must adjust to the child. Children and their parents cooperated and complemented each other during healthcare encounters. Healthcare professionals addressed the child’s self-identified needs and made the child feel comfortable during encounters. Healthcare professionals’ working methods aided child participation at healthcare encounters, but the healthcare organisation could be a hinder.

The theme “Feeling alienated or familiar with healthcare encounters” illustrates how the children needed extra support from healthcare professionals and their parents to be able to participate. Children felt reluctant to engage in healthcare encounters and experienced difficulty expressing how they really felt. Therefore, children must feel safe, understood, and respected by healthcare professionals and receive the help they need. Over time, children felt more comfortable at healthcare encounters once they knew what would happen and once they were assured that healthcare professionals would give them the support they needed to participate.

Conclusions: Child and parent differences in the assessment of HRQOL may depend on the questionnaire used. Differences between child and parent reports of child HRQOL must be taken into account at healthcare encounters.

Healthcare professionals adjust their interaction and communication with the child depending on the child’s maturity, and talk about the child’s experiences and challenges in everyday life. Collaboration between children and parents before a healthcare encounter and between children, parents, and healthcare professionals during an encounter help children express their wishes and experiences. Healthcare professionals enable child participation by creating a good relationship with the child and their parents, and by strengthening the confidence and autonomy of the child.

Children’s active participation in healthcare encounters varies depending on if they feel alienated or familiar with the encounter. Children distance themselves and resist healthcare encounters if they find them emotionally distressing and feel disregarded and labelled. Over time, children can become more familiar and at ease with healthcare situations once they feel safe and experience personal and positive encounters. When children are prepared for the encounter, provided with the space and support they want, and receive tailored help, they are more enabled and empowered to participate.

Place, publisher, year, edition, pages
Umeå: Umeå Universitet , 2020. , p. 72
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2088
Keywords [en]
Child, Gender, Healthcare professionals, Health-related quality of life, Informant discrepancies, Juvenile Idiopathic Arthritis, Parents, Participation, Pediatrics, Qualitative, Questionnaire
National Category
Pediatrics
Research subject
Pediatrics
Identifiers
URN: urn:nbn:se:umu:diva-170739ISBN: 978-91-7855-265-8 (print)ISBN: 978-91-7855-266-5 (electronic)OAI: oai:DiVA.org:umu-170739DiVA, id: diva2:1430193
Public defence
2020-06-12, Bergasalen, Norrlands universitetssjukhus, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2020-05-20 Created: 2020-05-14 Last updated: 2020-05-19Bibliographically approved
List of papers
1. Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study
Open this publication in new window or tab >>Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study
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2012 (English)In: Pediatric Rheumatology, ISSN 1546-0096, E-ISSN 1546-0096, Vol. 10, article id 33Article in journal (Refereed) Published
Abstract [en]

Background: Juvenile Idiopathic Arthritis (JIA) affects children and adolescents with both short-term and long-term disability. These children also report lower health-related quality of life (HRQOL) compared to their healthy peers. However, there seems to be some discrepancies between self- and parent-reports, and gender differences need to be further studied. This study aims to describe HRQOL in girls and boys with JIA, and to explore gender differences in self-reports compared to parent-reports of HRQOL in children with JIA.

Methods: Fifty-three children and adolescents with JIA (70% girls and 30% boys) with a median age of 14 years (8–18 years), and their parents, participated in this cross-sectional study in Sweden. Data was systematically collected prior to ordinary visits at a Pediatric outpatient clinic, during a period of 16 months (2009–2010). Disability was assessed with the Childhood Health Assessment Questionnaire (CHAQ), and disease activity by physicians’ assessments and Erythrocyte Sedimentation Rate (ESR). The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) was used to assess self- and parent-reports of HRQOL in the child.

Results: In this sample of children with generally low disease activity and mild to moderate disability, more than half of the children experienced suboptimal HRQOL, equally in girls and boys. Significant differences between self- and parent-reports of child HRQOL were most evident among girls, with lower parent-reports regarding the girl’s physical- and psychosocial health as well as in the total HRQOL score. Except for the social functioning subscale, where parents’ reports were higher compared to their sons, there were no significant differences between boys- and parent-reports.

Conclusions: More than half of the girls and boys experienced suboptimal HRQOL in this sample, with no gender differences. However, there were differences between self- and parent-reports of child HRQOL, with most significant differences found among the girls. Thus, differences between self- and parent-reports of child HRQOL must be taken into account in clinical settings, especially among girls with JIA.

National Category
Pediatrics
Identifiers
urn:nbn:se:umu:diva-60562 (URN)10.1186/1546-0096-10-33 (DOI)000312638500001 ()22985358 (PubMedID)
Note

Correction: Lundberg V, Lindh V, Eriksson C, Petersen, S, Eurenius, E. Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study. Pediatric Rheumatology 2018;16:53. DOI: 10.1186/s12969-018-0269-2

Available from: 2012-10-17 Created: 2012-10-17 Last updated: 2020-05-18Bibliographically approved
2. Health-related quality of life among Swedish children with Juvenile Idiopathic Arthritis: parent-child discrepancies, gender differences and comparison with a European cohort
Open this publication in new window or tab >>Health-related quality of life among Swedish children with Juvenile Idiopathic Arthritis: parent-child discrepancies, gender differences and comparison with a European cohort
2017 (English)In: Pediatric Rheumatology, ISSN 1546-0096, E-ISSN 1546-0096, Vol. 15, article id 26Article in journal (Refereed) Published
Abstract [en]

Background: This study investigates gender differences in self-reports and between parent and child reports in Healthrelated Quality of Life (HRQOL), measured with disease-specific and generic instruments for chronic disease. Comparison of HRQOL results in this Juvenile Idiopathic Arthritis (JIA) sample to a European cohort of children with JIA and one of children with other health conditions are also made. Methods: Fifty-three children with juvenile idiopathic arthritis (JIA), aged 8-18 years, and their parents completed the condition-specific DISABKIDS for JIA, and the DISABKIDS generic instrument for chronic conditions (DCGM-37) in a cross-sectional study. European reference data were used for comparison of child and parental reports. Results: Child self-reports in DCGM-37 and DISABKIDS for JIA showed no gender differences. Parental and child reports of the child's HRQOL differed only in DCGM-37; this was among girls who scored their independence (p = 0.03), physical limitation (p = 0.01), social exclusion (p = 0.03), emotions (p < 0.01), and general transformed score (p < 0.01) higher than did their parents. Our sample of children with JIA reported more physical limitation compared to samples of European children with JIA (p = 0.01), European children with chronic conditions (p < 0.01), and their parents (p = 0. 01 and p < 0.01). The Swedish children reported more problem with understanding compared to the European JIA sample (p = 0.03). Swedish parents perceived their children's independence significantly lower than did the European parents of JIA children (p < 0.01), as well as European parents of children with chronic conditions (p = 0.03). The Swedish parents also perceived their children to have significantly lower social inclusion (p < 0.05) and general transformed score (p = 0.04), in comparison to European parents of children with chronic conditions. Conclusions: Parent-child differences in assessment of quality of life depend on the HRQOL instrument used, especially among girls. In comparison to European cohorts, our sample of children with JIA experienced more physical limitations and less understanding.

Place, publisher, year, edition, pages
BioMed Central, 2017
Keywords
Gender, Informant discrepancies, Paediatrics, Questionnaire
National Category
Pediatrics Rheumatology and Autoimmunity
Identifiers
urn:nbn:se:umu:diva-136078 (URN)10.1186/s12969-017-0153-5 (DOI)000401189900002 ()28403864 (PubMedID)
Available from: 2017-06-14 Created: 2017-06-14 Last updated: 2020-05-18Bibliographically approved
3. How children with juvenile idiopathic arthritis participate in their healthcare: Health professionals' views
Open this publication in new window or tab >>How children with juvenile idiopathic arthritis participate in their healthcare: Health professionals' views
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(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background: This study explores how juvenile idiopathic arthritis (JIA) teams experience participation of children with arthritis in their own healthcare.

Methods: This qualitative study includes focus groups of HCPs from different professions. The interviews were analysed with qualitative content analysis.

Results: The theme “Creating an enabling arena” illuminates how HCPs face possibilities and challenges when enabling children to communicate and participate in clinical encounters. HCPs, parents, and the healthcare system need to adjust to the child. The sub-theme “Children and parents bring different perspectives” describes how children and their parents cooperate and complement each other during healthcare encounters. The sub-theme “Building a comfortable setting” includes how HCPs address the child’s self-identified needs and make the child feel comfortable during encounters. The sub-theme “Facilitating methods in a limiting system” includes how HCPs’ working methods and organization may help or hinder child participation during encounters.

Conclusions: Using age-appropriate explanations, HCPs encourage children to express their everyday challenges. Collaboration between children and parents before a healthcare encounter and between children, parents, and HCPs during an encounter help children express their wishes and experiences. HCPs enable child participation by creating a good relationship with the children and their parents and by strengthening the children’s confidence and autonomy. 

National Category
Pediatrics
Identifiers
urn:nbn:se:umu:diva-170735 (URN)
Note

Have the title "How children with juvenile idiopathic arthritis can be more involved in their healthcare: Health professionals’ views" in list of  Original papers in the published thesis.

Available from: 2020-05-14 Created: 2020-05-14 Last updated: 2020-05-18
4. How children with juvenile idiopathic arthritis experience participation and communication in healthcare encounters: Children’s, young adults’ and parents’ views
Open this publication in new window or tab >>How children with juvenile idiopathic arthritis experience participation and communication in healthcare encounters: Children’s, young adults’ and parents’ views
Show others...
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Children report that they do not participate in their healthcare as much as they want, despite having the lawful right to form their own views and the right to express those views freely in all matters affecting themselves. Children and parents are more satisfied when healthcare professionals (HCP) use a participatory style in healthcare encounters.

Aim: The aim was to explore children and young adults with Juvenile Idiopathic Arthritis (JIA) experiences and parents of children with JIA about the children´s participation and communication with healthcare professionals.

Methods: A qualitative study design was used, with participatory workshops, held separately for children and young adults with JIA and parents of children with JIA. The workshop data were analysed with Graneheim and Lundman’s Qualitative Content Analysis (QCA) framework resulting in one main theme and two subthemes. 

Results: The theme “Moving from alienation to familiarity with healthcare encounters” illustrates how the children needed extra support from healthcare professionals (HCPs) and their parents to be able to participate. They needed to feel safe, understood and respected by the HCPs and they wanted to receive the help they needed. The subtheme “Distancing oneself from healthcare” describes why children felt reluctant to engage in the healthcare encounters and experienced difficulty expressing how they really felt. The subtheme “Being a normal event in life” explains how children felt more comfortable in healthcare over time when they knew what would happen, and felt that HCP gave them the support they needed to participate.

Conclusions: Children’s participation in healthcare encounters varied depending on if children felt alienation or familiar to the healthcare situations. Children distance themselves and are reluctant to healthcare encounters if they find them emotionally distressing and feel disregarded. In time children can become more familiar and at ease with healthcare situations when they feel safe and experience personal and positive encounters. When the children are prepared for the encounter, provided with the space and support they want and receive tailored help they are more enabled to participate.

National Category
Pediatrics
Identifiers
urn:nbn:se:umu:diva-170736 (URN)
Available from: 2020-05-14 Created: 2020-05-14 Last updated: 2020-05-18

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