How children and adolescents with juvenile idiopathic arthritis participate in their healthcare: health professionals’ views

Lundberg, Veronica; Sandlund, Marlene; Eriksson, Catharina; Janols, Rebecka; Lind, Torbjörn; Fjellman‐Wiklund, Anncristine

doi:10.1080/09638288.2020.1811406

Cited by 4 publications

(3 citation statements)

References 29 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…According to Fadyl et al, participants will relate to both' in-the-moment knowledge' and 'retrospective knowledge', during interviews [36]. In our earlier study, HCPs found children and parents to complement each other, and that older children could recall their health better [28]. Children and adolescents in this study described that they could remember health events well, but their parents could explain these in more detail.…”

Section: Methodological Considerationsmentioning

confidence: 57%

“…Likewise in a qualitative study by author date, HCPs could perceive that children and parents have different ways of communicating the child's health at healthcare encounters. Children were seen by HCPs to live in the moment, focusing on positive aspects, while the parents had a longer perspective and focused on the child's problems [28]. The concept Voice relates to these findings.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

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

et al. 2021

Self Cite

View full text Add to dashboard Cite

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.

show abstract

Section: Methodological Considerationsmentioning

confidence: 57%

Section: Discussionmentioning

confidence: 99%

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

et al. 2021

Self Cite

View full text Add to dashboard Cite

show abstract

“…These families manage complex treatment regimens and regular visits with multiple subspecialists, including ophthalmology, psychology, and physical and occupational therapists, and usually require the long-term use of injectable and infusion therapies [ 14 ]. It is also known that children, parents, and clinicians have different views of disease and expectations of treatment outcomes, and it is important to enable children to actively communicate their views with their clinician [ 15 ].…”

Section: Introductionmentioning

confidence: 99%

Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing

Taxter¹,

Johnson²,

Tabussi³

et al. 2022

J Particip Med

View full text Add to dashboard Cite

Background The coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences, to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision-making. Increasing communication between patients and care teams is particularly important for children with chronic conditions. Juvenile idiopathic arthritis (JIA), the most common chronic pediatric rheumatic condition, is associated with increased pain, decreased function, and decreased quality of life. Objective The aim of this study is to design a dashboard prototype for use in coproducing care in patients with JIA. We evaluated the use and needs of end users, obtained a consensus on the necessary dashboard data elements, and constructed display prototypes to inform meaningful discussions for coproduction. Methods A human-centered design approach involving parents, patients, clinicians, and care team members was used to develop a dashboard to support the coproduction of care in 4 ambulatory pediatric rheumatology clinics. We engaged a multidisciplinary team (n=18) of patients, parents, clinicians, nurses, and staff during an in-person kick-off meeting followed by biweekly meetings. We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. The final dashboard components were determined via Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated by using the Plan-Do-Study-Act methodology. Patients and clinicians were surveyed regarding their experiences. Results Teams achieved consensus on what data mattered most at the point of care to support patients with JIA, families, and clinicians collaborating to make the best possible health care decisions. Notable themes included the right data in the right place at the right time, data in once for multiple purposes, patient and family self-management components, and the opportunity for education and increased transparency. A final set of 11 dashboard data elements was identified, including patient-reported outcomes, clinical data, and medications. Important design considerations featured the incorporation of real-time data, clearly labeled graphs, and vertical orientation to facilitate review and discussion. Prototype paper-testing with 36 patients and families yielded positive feedback, with 89% (8/9) to 100% (9/9) of parents (n=9) and 80% (8/10) to 90% (9/10) of clinicians (n=10) strongly agreeing or agreeing that the dashboard was useful during clinic discussions, helped to talk about what mattered most, and informed health care decision-making. Conclusions We developed a dashboard prototype that displays patient-reported and clinical data over time, along with medications that can be used during a clinic visit to support meaningful conversations and shared decision-making among patients with JIA, their families, and their clinicians and care teams.

show abstract

Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing (Preprint)

Taxter¹,

Johnson²,

Tabussi³

et al. 2021

Preprint

View full text Add to dashboard Cite

BACKGROUND Coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision making. Increasing communication between patients and care teams is particularly important for children with chronic conditions, such as juvenile idiopathic arthritis (JIA), which is the most common, chronic rheumatic condition of childhood, and is associated with increased pain, decreased function, and decreased quality of life. OBJECTIVE We aimed to design a dashboard prototype for use in coproducing care for JIA patients. We evaluated the context use and needs of end users, obtained consensus on the necessary dashboard data elements, and constructed display prototypes to inform meaningful discussions for coproduction. METHODS A human-centered design approach involving parents, patients, clinicians, and care team members was used to develop a dashboard to support coproduction of care in four diverse ambulatory pediatric rheumatology clinics across the United States. We engaged a multidisciplinary team (n=18) of patients/parents, clinicians, nurses, and staff during an in-person kick-off meeting, followed by bi-weekly meetings. We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. Final necessary dashboard components were determined using Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated using PDSA methodology. Patients and providers were surveyed about their experiences. RESULTS Teams achieved consensus on what data matters most at point-of-care to support JIA patients, families, and clinicians partnering together to make the best possible decisions for better health. Notable themes included: the right data, in the right place, at the right time; data in once for multiple purposes; patient and family self-management components; and opportunity for education and increased transparency. A final set of 11 dashboard data elements were identified which include patient-reported outcomes, clinical data, and medications. Important design considerations include incorporation of real-time data, clearly labeled graphs, and vertical orientation to facilitate review and discussion. Prototype paper testing with 36 patients/families yielded positive feedback about the dashboard’s usefulness during clinic discussions, helped to talk about what mattered most, and informed healthcare decision making. CONCLUSIONS Our study developed a dashboard prototype that displays patient-reported and clinical data over time, along with medications, that can be used during a clinic visit to support meaningful conversations and shared decision making between JIA patients/families and their clinicians and care teams. CLINICALTRIAL N/A

show abstract

How children and adolescents with juvenile idiopathic arthritis participate in their healthcare: health professionals’ views

Cited by 4 publications

References 29 publications

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

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

Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing

Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing (Preprint)

Contact Info

Product

Resources

About