Adolescents' social needs living with juvenile idiopathic arthritis and their views about digital resources.


Journal

Advances in rheumatology (London, England)
ISSN: 2523-3106
Titre abrégé: Adv Rheumatol
Pays: England
ID NLM: 101734172

Informations de publication

Date de publication:
08 07 2020
Historique:
received: 19 03 2020
accepted: 29 06 2020
entrez: 10 7 2020
pubmed: 10 7 2020
medline: 7 9 2021
Statut: epublish

Résumé

Juvenile Idiopathic Arthritis (JIA) and its related symptoms (e.g. pain) have been associated with interference in the daily life of adolescents with JIA including their friendships. There is little research in that sense and in consequence, interventions designed to improve this area. The objectives of this study are 1) to gain knowledge about the needs of adolescents with JIA, particularly focused on their friendships; 2) to explore the potential of the Internet to help them, and 3) to determine what kind of online resource would be the best and what elements it should include. To achieve the proposed objectives we designed a qualitative study including two phases: the first one exploratory (semi-structured interviews) and the following, confirmatory (online focus group). 14 adolescents were interviewed and 7 participated in the focus group. They reported some social challenges related to their illness: feeling different, criticized by peers, or not believed. Additionally, they specified some of the coping strategies they used, such as disclosing to others that they have JIA, using communication skills, maintaining activities with friends, trying to minimize pain, and ignoring negative comments. Adolescents considered an online resource useful and mentioned that they would like to find general information and to have the possibility to interact with others. They considered Instagram and WhatsApp as good platforms to implement the online resource. According to their perceptions, adolescents with JIA can benefit from an online resource which delivers information, strategies and facilitates interaction with others.

Sections du résumé

BACKGROUND
Juvenile Idiopathic Arthritis (JIA) and its related symptoms (e.g. pain) have been associated with interference in the daily life of adolescents with JIA including their friendships. There is little research in that sense and in consequence, interventions designed to improve this area. The objectives of this study are 1) to gain knowledge about the needs of adolescents with JIA, particularly focused on their friendships; 2) to explore the potential of the Internet to help them, and 3) to determine what kind of online resource would be the best and what elements it should include.
METHODS
To achieve the proposed objectives we designed a qualitative study including two phases: the first one exploratory (semi-structured interviews) and the following, confirmatory (online focus group).
RESULTS
14 adolescents were interviewed and 7 participated in the focus group. They reported some social challenges related to their illness: feeling different, criticized by peers, or not believed. Additionally, they specified some of the coping strategies they used, such as disclosing to others that they have JIA, using communication skills, maintaining activities with friends, trying to minimize pain, and ignoring negative comments. Adolescents considered an online resource useful and mentioned that they would like to find general information and to have the possibility to interact with others. They considered Instagram and WhatsApp as good platforms to implement the online resource.
CONCLUSIONS
According to their perceptions, adolescents with JIA can benefit from an online resource which delivers information, strategies and facilitates interaction with others.

Identifiants

pubmed: 32641112
doi: 10.1186/s42358-020-00138-4
pii: 10.1186/s42358-020-00138-4
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

36

Auteurs

Imma Beneitez (I)

PSiNET research group, Faculty of Psychology and Education, Universitat Oberta de Catalunya, Rambla Poblenou, 156, 08018, Barcelona, Spain. ibeneitez@uoc.edu.

Rubén Nieto (R)

eHealth Lab, Faculty of Health Sciences, Universitat Oberta de Catalunya, Barcelona, Spain.

Eulàlia Hernández (E)

PSiNET research group, Faculty of Psychology and Education, Universitat Oberta de Catalunya, Rambla Poblenou, 156, 08018, Barcelona, Spain.
UOC eHealth Center, Universitat Oberta de Catalunya, Barcelona, Spain.

Mercè Boixadós (M)

PSiNET research group, Faculty of Psychology and Education, Universitat Oberta de Catalunya, Rambla Poblenou, 156, 08018, Barcelona, Spain.

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