Participation in pediatric healthcare: Young people with a rheumatic diagnosis experiences during childhood.

Veronica Lundberg, Imelda Coyne, Maria Wiklund, Kristina Hörnberg, Anncristine Fjellman Wiklund
Purpose:

To explore the experiences that young people with a rheumatic disease have as children and adolescents communicating with healthcare professionals and participating in healthcare encounters.

Methods:

This study is part of a larger project which aims to improve the transition to adult healthcare for young people with a rheumatic disease. 

Ten individual qualitative interviews were held with young adult women (aged 18-30 years), who had been diagnosed with and treated for a rheumatic diagnose as a child and adolescent.

The interviews lasted between 60-90 minutes. All the interviews were audio-recorded, transcribed verbatim and analysed using Qualitative Content Analysis

Results:

The main theme “Needing to feel as the important person in the room” represent facilitators and barriers for child participation at healthcare encounter. 

By showing interest in the child’s everyday life and interests, and giving the child the space to describe made it easier to participate. If healthcare professionals (HCPs) and the children felt trust in each other the child feel comfortable and safe during healthcare encounters and participation was facilitated.

When participants were excluded from the communication or they had experienced hardship, for example with injections, during healthcare encounters they lost trust and interest in participation. Also, if they had severe physical or mental health problems or felt the situation stressful and overwhelming they were not able to communicate independently

Conclusion(s):

HCPs can facilitate children’s communication and participation in decisions regarding their health and treatment by ensuring that they feel that they are important and the HCPs value their opinion. Focusing on the child’s interests, creating a safe space and trust for each other makes participation easier for the child

Implications:

These results are important and informative for physical therapists. Physiotherapists as well as other members of the rheumatology team must consider the child's needs during healthcare encounters. It is important to create a platform so that children can describe what is important in their life, how the child can be involved in such things so that the child can be given the best possible support

Funding acknowledgements:
the Norrbacka Eugenia foundation Region Västerbotten
Keywords:
Pediatrics
Participation
Qualitative study
Primary topic:
Paediatrics
Second topic:
Systemic autoimmune diseases/rheumatoid arthritis
Third topic:
Professional issues: diversity and inclusion
Did this work require ethics approval?:
Yes
Name the institution and ethics committee that approved your work:
the Regional Ethical Review Board in Umeå, Sweden
Provide the ethics approval number:
2017/06-31, 2018/135-32, 2021-00517
Has any of this material been/due to be published or presented at another national or international conference prior to the World Physiotherapy Congress 2025?:
No

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