O002. Factors facilitating the self- and shared-management of Juvenile Idiopathic Arthritis

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_5) ◽  
Author(s):  
Simon Stones
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Paediatric Rheumatology ◽  
The Self ◽  
Self Management ◽  
Management Support ◽  
Children And Young People ◽  
Realist Approach ◽  
Shared Management ◽  
Initial Question

Abstract Background Juvenile idiopathic arthritis (JIA) requires some form of lifelong management, with at least one third of children symptomatic in adulthood. Therefore, empowering children to competently self-manage their health and wellbeing across the lifecourse is logical, while supporting families in their shared-management role during childhood. However, there was a limited theoretical basis to the self- and shared-management of JIA across the lifecourse. The objective is to explore the factors facilitating the self- and shared-management of JIA using a realist approach to evaluation. Methods Guided by the Individual and Family Self-management Theory, a three-stage realist approach to evaluation was undertaken: 1) initial JIA self- and shared-management question theories were elicited from literature reviews and stakeholder insights [1]; 2) seven initial question theories were tested using teacher-learner cycle interviews with 20 participants; 3) findings were analysed using a theory-driven approach to thematic analysis, using deductive, inductive, and retroductive reasoning to extend or refute the initial question theories, in order to identify demi-regularities in the data. Results Six refined JIA self- and shared-management question theories emerged: 1) meaningful and bespoke self-management support across the life course for children and young people with JIA; 2) recognised and valued shared-management support for the families of children and young people with JIA, with autonomy in mind; 3) individual healthcare plans as a shared management communication tool to facilitate optimal management of JIA; 4) consistent recognition, value, and encourage of self- and shared-management support from the paediatric rheumatology multi-disciplinary team and associated professionals; 5) child, young-person, and family-focused paediatric rheumatology care and support services across the lifecourse; and 6) bespoke and inclusive approaches by education providers to enable children and young people with JIA to feel safe, supported, and able to fulfil their potential. Conclusion There is an increasing recognition of the importance of self- and shared-management of JIA and other paediatric-onset chronic conditions. However, there is a lack of an overall, cohesive approach to self- and shared-management between healthcare providers, education providers, and patient/parent organisations. The findings from this study illuminate the factors facilitating JIA self- and shared-management at individual, interpersonal, institutional and infrastructural levels, bearing relevance to individuals and organisations involved in caring for, and supporting children with JIA and their families.

scholarly journals POS0154-HPR FACTORS FACILITATING THE SELF- AND SHARED-MANAGEMENT OF JIA BY CHILDREN, YOUNG PEOPLE, THEIR FAMILIES, AND PROFESSIONALS INVOLVED IN THEIR CARE: A REALIST EVALUATION

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 290.1-290
Author(s):  
S. Stones ◽  
V. Swallow ◽  
L. Milnes
Keyword(s):  
Young People ◽  
Healthcare Professionals ◽  
Third Sector ◽  
Realist Evaluation ◽  
The Self ◽  
Self Management ◽  
Management Support ◽  
Children And Young People ◽  
Education Professionals ◽  
Shared Management

Background:Juvenile idiopathic arthritis (JIA) is a long-term condition, often requiring some element of lifelong management. Therefore, it is logical that children and young people are empowered to become competent at self-managing their health and wellbeing, while families are supported in their shared-management role during childhood, relinquishing control at age- and developmentally appropriate periods in their child’s development. However, there are limited theoretical foundations underpinning optimal self- and shared-management support for children, young people and families living with JIA.Objectives:To explain the factors facilitating the self- and shared-management of JIA by children, young people, and their families, with professional support from healthcare professionals, third sector organisations, and education professionals.Methods:Guided by the Individual and Family Self-management Theory and the Shared Management Model, a three-stage realist evaluation was undertaken: 1) initial JIA self- and shared-management question theories were elicited from a document review, integrative review, and stakeholder insights [1]; 2) seven initial question theories were tested using qualitative research methods with 20 participants (young people, families, healthcare professionals, education professionals, and third sector representatives); 3) analysis of findings using a theory-driven approach to thematic analysis, in order to identify demi-regularities to extend or refute the initial question theories. The analysis drew on deductive, inductive, and retroductive reasoning.Results:There were six refined JIA self- and shared-management question theories: 1) meaningful and bespoke self-management support across the life course for children and young people with JIA; 2) recognised and valued shared-management support for the families of children and young people with JIA, with autonomy in mind; 3) individual healthcare plans as a shared management communication tool to facilitate optimal management of JIA; 4) consistent recognition, value, and encourage of self- and shared-management support from the paediatric rheumatology multi-disciplinary team and associated professionals; 5) child, young-person, and family-focused paediatric rheumatology care and support services across the lifecourse; and 6) bespoke and inclusive approaches by education providers to enable children and young people with JIA to feel safe, supported, and able to fulfil their potential.Conclusion:There is an increasing recognition of the importance of self- and shared-management of JIA. However, there is a lack of an overall, cohesive approach to self- and shared-management between healthcare providers, education providers, and the third sector. Findings from this study illuminate the factors facilitating JIA self- and shared-management at individual, interpersonal, institutional and infrastructural levels. Further work is required to empirically test these refined question theories with interventions designed to enhance JIA care, education, and support.References:[1]Stones et al. (2020). A realist approach to eliciting the initial programme theories for the self- and shared-management of juvenile idiopathic arthritis by children, young people, families and professionals involved in their care. Pediatric Rheumatology 18(Suppl 2): O062.Acknowledgements:The authors thank all of the participants who helped to shape the findings of this study. This work formed part of a PhD study funded by the University of Leeds.Disclosure of Interests:Simon Stones Speakers bureau: Janssen, Consultant of: Parexel, Envision Pharma Group, 67 Health, On The Pulse Consultancy, Veronica Swallow: None declared, Linda Milnes: None declared

scholarly journals POS1473-HPR SELF- AND SHARED-MANAGEMENT INTERVENTIONS FOR CHILDREN, YOUNG PEOPLE, AND FAMILIES LIVING WITH RHEUMATIC AND MUSCULOSKELETAL DISEASES: AN INTEGRATIVE REVIEW

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1022.1-1022
Author(s):  
S. Stones
Keyword(s):  
Young People ◽  
Musculoskeletal Diseases ◽  
Integrative Review ◽  
Research Articles ◽  
Self Management ◽  
Children And Young People ◽  
Shared Management ◽  
Management Interventions ◽  
Family Nursing ◽  
Patient Reported

Background:Self-management refers to the manner in which individuals manage the symptoms, treatment, physical and psychosocial impact of long-term conditions (LTCs). The importance of equipping children and young people living with LTCs, like rheumatic and musculoskeletal diseases (RMDs) with the capacity to self-manage is increasingly recognised in the literature, and in conversation. In addition, there is a strong case to support families who assume a shared-management role for their child. However, there is a limited understanding of interventions designed to improve self- and shared-management capacity in this population, prompting for a review of the literature, across multiple study designs.Objectives:The aim of this integrative review was to identify and describe interventions promoting self-management of RMDs by children and young people, and shared-management of RMDs by families.Methods:The integrative review followed a six-stage process [1]. Studies published since 2010 were identified through a search of eight bibliographic databases. Studies reporting on any paediatric-onset RMD were included, as were those in multiple condition areas where RMDs were included in the analysis. Twenty-six articles met the inclusion criteria: 24 research articles reporting on 17 interventions, and two review articles containing a further four research articles. The methodological quality of included articles was assessed using the Mixed Methods Appraisal Tool, and a thematic synthesis was undertaken.Results:Most study participants were CYP and families living with JIA. A minority of studies included CYP and families living with other RMDs, as well as chronic pain, type 1 diabetes mellitus, epilepsy, sleeping disorder, and cancer. Around half of the articles reported a specific theory and/or model or framework guiding the intervention. Interventions tended to be focussed at either CYP or families, with few designed to span the lifecourse from birth to young adulthood, while supporting all members of the family unit. Intervention types included: decisional aids; comic educational book; family retreat weekend; internet- and group-based cognitive behavioural programme; internet-based peer mentoring intervention; internet-based self-guided self-management intervention with weekly social support; internet-based electronic patient-reported outcome platform; smartphone applications; telenursing intervention; therapeutic recreational camp; therapeutic family nursing conversations; transition programme/clinic; and video games-based task-orientated activity training.Conclusion:This integrative review identified a range of interventions that have been evaluated to promote self- and shared management of RMDs by CYP and their families. There is a noticeable lack of emphasis on targeting the whole lifecourse for CYP, as well as supporting both CYP and families as they manage their RMD. Further work is needed to explore the underlying mechanisms which dictate how self- and shared-management interventions influence outcomes for CYP and families, under differing contexts, since this was overlooked by the majority of included studies.References:[1]De Souza et al. Integrative review: What is it? How to do it? Einstein (São Paulo) 2010; 8(1): 102-106.Acknowledgements:This work formed part of a PhD study funded by the University of Leeds.Disclosure of Interests:Simon Stones Speakers bureau: Janssen, Consultant of: Envision Pharma Group

scholarly journals OP0278-PARE PROVIDING SUPPORT TO FAMILIES OF CHILDREN NEWLY-DIAGNOSED WITH CHILDHOOD ARTHRITIS: A PATIENT AND PARENT-LED PILOT STUDY TO DEVELOP AND ASSESS ‘A LITTLE BOX OF HOPE’ SUPPORT PACKS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 168.1-169
Author(s):  
S. Chibnell-Smith ◽  
A. L. Chibnell-Smith ◽  
R. Beesley
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Pilot Study ◽  
Young People ◽  
Musculoskeletal Diseases ◽  
Paediatric Rheumatology ◽  
Free Text ◽  
Newly Diagnosed ◽  
Online Questionnaire ◽  
Children And Young People ◽  
Childhood Arthritis

Background:Juvenile Idiopathic Arthritis (JIA) is a heterogenous group of autoimmune disorders characterised by chronic joint inflammation, diagnosed in around 1 in 1,000 children and young people (CYP) under the age of 16. Delays in diagnosis are common [1], awareness is low, and paediatric rheumatological conditions have a considerable impact on young people and their families [2]. A lack of understanding amongst families of newly-diagnosed children leads to uncertainty and anxiety.Objectives:This patient and parent-led project developed a resource pack for parents of CYP newly-diagnosed with JIA, to provide information and support. Following a pilot, feedback from recipients was collated and analysed to help improve future provision.Methods:A young person with JIA identified the need for direct family support. Juvenile Arthritis Research (a UK charity) developed a unique pack of support information, containing resources for both children and their families - called A Little Box Of Hope. This included information about JIA and support services available for families, as well as Kipo (a children’s book about JIA) and accompanying finger puppet. Clinicians at one paediatric rheumatology centre provided information about the packs to newly diagnosed families, who then requested a free box to be posted to them.Following an initial pilot study, recipients were invited to complete a short online questionnaire and provide feedback to allow refinement of the provision.Results:Respondents were asked a series of questions, each on a scale of 1-5. Every respondent gave a score of 5 in response to “What do you think of the idea of A Little Box Of Hope?”Every parent of children under ten years old gave a score of 5 for every item when asked “How useful is each item in your Little Box Of Hope?”Respondents also gave free-text comments:* “It was very well thought out and I felt supported”* “I know so much more about JIA now than I did before. I cannot thank you enough.”* “It was extremely useful and made me feel supported during a very stressful time and this enabled me to support my son more effectively.”* “It made my daughter feel less alone.”Some parents of older children felt that some information specifically for teens would be useful, and a Teen pack is being developed.Conclusion:Recipients of A Little Box Of Hope have found the information useful and feel supported. Following the pilot study, we have developed My JIA, a booklet reviewed by a multi-disciplinary clinical team, with comprehensive information for families affected by JIA. A Teen pack, for children aged around 10 years or older, is being developed to provide targeted support to this group.The COVID-19 pandemic has adversely affected access to healthcare services, increasing the need for remote parent- and charity-provided support through A Little Box Of Hope.As such, we intend to expedite the roll-out of the project across the country building on the success of the pilot project.References:[1]McErlane F, Foster HE, Carrasco R, et al. Trends in Paediatric Rheumatology Referral Times and Disease Activity Indices over a Ten-Year Period among Children and Young People with Juvenile Idiopathic Arthritis: Results from the Childhood Arthritis Prospective Study. Rheumatology (Oxford) 2016;55(7):1225–34.[2]Foster HE, Scott C, Tiderius CJ, et al. Improving Musculoskeletal Health for Children and Young People - A “Call to Action”. Best Pract Res Clin Rheumatol 2020;34(5):101566.[3]Dejaco C, Alunno A, Bijlsma JWJ, et al. Influence of COVID-19 Pandemic on Decisions for the Management of People with Inflammatory Rheumatic and Musculoskeletal Diseases: A Survey among EULAR Countries. Ann Rheum Dis 2020;0:1-9.Disclosure of Interests:None declared

Self-management in children and young people with epilepsy: A systematic review and qualitative meta-synthesis

2020 ◽  
pp. 135910532096353
Author(s):  
Orla Mooney ◽  
Aoife McNicholl ◽  
Veronica Lambert ◽  
Pamela Gallagher
Keyword(s):  
Social Support ◽  
Systematic Review ◽  
Young People ◽  
Management Strategies ◽  
The Self ◽  
Self Management ◽  
Future Research ◽  
Limited Evidence ◽  
Self Monitoring ◽  
Children And Young People

The aim of this review was to conduct a meta-synthesis of qualitative studies exploring the self-management experiences, attitudes and perspectives of children and young people (CYP) living with epilepsy. Five databases were systematically searched up to September 2019. Fourteen papers were included. One analytical theme: self-management strategies was generated informed by four descriptive themes; concealment; medicine adherence; self-monitoring of activities; and seeking social support. The synthesis identified that while CYP with epilepsy engage in specific self-management strategies, there is limited evidence in understanding self-management and the processes underlying the use of it. Future research examining self-management in childhood is required.

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