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How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a
Veronica Lundberg1,2, Catharina Eriksson3,4, Torbjörn Lind3
1Department of Community Medicine and Rehabilitation, Physiotherapy, Umeå University, SE 901 87, Umeå, Sweden. veronica.lundberg@umu.se.
Insights
Children with Juvenile Idiopathic Arthritis (JIA) feel alienated in healthcare when encounters are distressing, leading to reluctance. Familiarity, safety, and tailored support improve their participation in healthcare.
Area of Science:
- Pediatric Rheumatology
- Patient-Centered Care
- Qualitative Health Research
Background:
- Children desire greater participation in their healthcare, despite legal rights to express views.
- Healthcare professional (HCP) participatory styles enhance patient and parent satisfaction.
Purpose of the Study:
- To explore the perspectives of children, adolescents, and young adults with Juvenile Idiopathic Arthritis (JIA) and their parents on healthcare participation and communication.
- To understand how JIA patients and their families experience interactions with healthcare professionals.
Main Methods:
- Qualitative study employing participatory workshops with separate groups of children/young adults with JIA and their parents.
- Data analyzed using Graneheim and Lundman's Qualitative Content Analysis.
Main Results:
- A central theme emerged: "Feeling alienated or familiar with healthcare encounters."
- Children felt alienated when healthcare was emotionally distressing, leading them to withhold information.
- Reluctance to engage stemmed from difficulty expressing true feelings, while familiarity grew with predictable, supportive encounters.
Conclusions:
- Children's healthcare participation is contingent on feeling familiar and safe, rather than alienated or distressed.
- Emotional distress and feeling disregarded cause children to distance themselves from healthcare.
- Preparation, adequate support, and personalized care empower children to participate more effectively in their healthcare journey.
Background:
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 them. Children and parents appeared to be more satisfied when healthcare professionals (HCP) use a participatory style in healthcare encounters.
Aim:
To explore how children, adolescents and young adults with Juvenile Idiopathic Arthritis (JIA) and parents of children with JIA view their participation and communication in healthcare encounters with healthcare professionals.
Methods:
Using a qualitative study design, participatory workshops were 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 resulting in one main theme and two subthemes.
Results:
The theme "Feeling alienated or familiar with healthcare encounters" illuminates how children felt alienated at healthcare encounters if they found the encounters emotionally distressing. Children could withhold information regarding their health and function from both HCPs and their family and friends. The subtheme "Distancing oneself from healthcare" describe 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" describe how children felt more comfortable over time engaging with HCPs when they knew what would happen, and felt that HCPs gave them the necessary support they needed to participate.
Conclusions:
Children's participation in healthcare encounters varied depending if children felt alienated or familiar to the healthcare situations. Children distance themselves and are reluctant to engage in healthcare encounters if they find them emotionally distressing and feel disregarded. Over 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.
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