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 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.

‘That's what makes me better’: Investigating children and adolescents' experiences of pain communication with healthcare professionals in paediatric rheumatology

“…This study extends findings established in previous research about the roles and values of parents in relaying information to healthcare professionals (Lundberg et al, 2021). Similar to our study, Lundberg et al (2021) found mixed perspectives from children and adolescents about the value of parents in pain communication. In this research, some children and adolescents believed parents provided a useful external perspective and they spoke to them frequently about their pain.…”

“…This study extends findings established in previous research about the roles and values of parents in relaying information to healthcare professionals (Lundberg et al, 2021 ). Similar to our study, Lundberg et al ( 2021 ) found mixed perspectives from children and adolescents about the value of parents in pain communication.…”

“…Some literature has highlighted that children and adolescents believe that healthcare professionals do not understand their pain and healthcare professionals rarely provide them with strategies on how to manage pain in specialized chronic pain programs (Dell'Api et al, 2007 ). Children and adolescents with juvenile idiopathic arthritis report that it can be challenging to engage directly in conversation with healthcare professionals, often relying on parents to relay important information in general to healthcare professionals (Lundberg et al, 2021 ).…”

Children's and young people's experiences of expressing their views and having them heard in health care: A deductive qualitative content analysis

“…The desire to protect children, particularly those who are vulnerable, is strong but can result in boundaries around children that silence them (James et al., 2007). Despite the reported benefits of being included in healthcare decision‐making (Bjønness et al., 2020; David et al., 2018; Miller & Jawad, 2019) and children's capacity and desire to have a voice in their care (Coyne & Gallagher, 2011; Foster et al., 2022; Kilkelly & Donnelly, 2006; Viksveen et al., 2022), children are still routinely excluded (Coyne et al., 2014; Kilkelly & Donnelly, 2011; Lundberg et al., 2021; O'Connor et al., 2021). Additionally, children's views are often excluded from service evaluations, even when the views of their parents are taken into consideration (Nordlind et al., 2022; Schalkers et al., 2016; Starlight Children's Foundation, 2021).…”

Analysis of the Role of Parents in Online Learning in the Covid-19 Pandemic

“…Especially if the child is still young, they can still be affected and sensitive to the things around him. So, the role of parents is needed and essential for children (Lundberg et al, 2021).…”