How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study

Abstract 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 health...

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Autores principales:	Veronica Lundberg, Catharina Eriksson, Torbjörn Lind, Imelda Coyne, Anncristine Fjellman-Wiklund
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Adolescent Child Juvenile idiopathic arthritis Parent Participation Qualitative Pediatrics RJ1-570 Diseases of the musculoskeletal system RC925-935
Acceso en línea:	https://doaj.org/article/ec0034eac7f845f788b7363f629a35e6
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spelling	oai:doaj.org-article:ec0034eac7f845f788b7363f629a35e62021-11-07T12:05:39ZHow children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study10.1186/s12969-021-00642-x1546-0096https://doaj.org/article/ec0034eac7f845f788b7363f629a35e62021-11-01T00:00:00Zhttps://doi.org/10.1186/s12969-021-00642-xhttps://doaj.org/toc/1546-0096Abstract 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.Veronica LundbergCatharina ErikssonTorbjörn LindImelda CoyneAnncristine Fjellman-WiklundBMCarticleAdolescentChildJuvenile idiopathic arthritisParentParticipationQualitativePediatricsRJ1-570Diseases of the musculoskeletal systemRC925-935ENPediatric Rheumatology Online Journal, Vol 19, Iss 1, Pp 1-11 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Adolescent Child Juvenile idiopathic arthritis Parent Participation Qualitative Pediatrics RJ1-570 Diseases of the musculoskeletal system RC925-935
spellingShingle	Adolescent Child Juvenile idiopathic arthritis Parent Participation Qualitative Pediatrics RJ1-570 Diseases of the musculoskeletal system RC925-935 Veronica Lundberg Catharina Eriksson Torbjörn Lind Imelda Coyne Anncristine Fjellman-Wiklund How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study
description	Abstract 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.
format	article
author	Veronica Lundberg Catharina Eriksson Torbjörn Lind Imelda Coyne Anncristine Fjellman-Wiklund
author_facet	Veronica Lundberg Catharina Eriksson Torbjörn Lind Imelda Coyne Anncristine Fjellman-Wiklund
author_sort	Veronica Lundberg
title	How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study
title_short	How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study
title_full	How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study
title_fullStr	How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study
title_full_unstemmed	How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study
title_sort	how children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study
publisher	BMC
publishDate	2021
url	https://doaj.org/article/ec0034eac7f845f788b7363f629a35e6
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How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study

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