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

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 POS0057-PARE SUMMARY OF PATIENT/PARENT ORGANISATION SERVICES PROMOTING SELF- AND SHARED-MANAGEMENT OF JIA IN THE UK AND IRELAND

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 235.1-235
Author(s):  
S. Stones ◽  
V. Swallow ◽  
L. Milnes
Keyword(s):  
Young People ◽  
Visual Information ◽  
Mode Of Delivery ◽  
Skills Training ◽  
Self Report ◽  
Long Term Conditions ◽  
Children And Young People ◽  
Shared Management ◽  
Management Interventions ◽  
The Uk

Background:Various patient/parent organisations provide information, education, and support services to children and young people with JIA and their families. Some organisations are JIA/uveitis focused, while others are umbrella rheumatic and musculoskeletal disease (RMD) organisations or have a broader remit to long-term conditions (LTCs). However, there are no summaries of such collective services offered in the UK and Ireland, which can add to confusion for children, young people, and families, while contributing to inconsistent signposting to services from healthcare professionals.Objectives:To summarise current and recent services promoting self- and shared-management of JIA by patient/parent organisations in the UK and Ireland.Methods:An electronic search of known patient/parent organisation platforms (website and/or social networking sites) was performed between August 2020 and January 2021. Materials provided at conference exhibitions since October 2016 were also reviewed. Services were identified, including their aims and further details, if available. These were then mapped by format (e.g., educational, telemedicine, art therapy) and element (e.g., informational videos, monitoring through self-report diaries, discussing art and related feelings), according to their mode of delivery (individual or group), adapted from Sattoe et al. (2015) [1].Results:Twelve patient/parent organisations in the UK and Ireland were identified (11 of which had some form of charity/company registration): seven were JIA-specific, one was uveitis-specific, two were RMD-focused, and two were LTC-focused. In total, 48 services were identified across the twelve organisations. Generally, group mode of delivery was more popular than individual mode of delivery. Of group-based services, educational and/or support sessions and residential/excursion programmes were the most frequently observed. Of individual-based services, educational sessions including written and visual information were predominant. No one organisation provided services across all formats and elements identified. There appeared to be a limited focus on goal setting, individual level skills training, and explicitly improving self-and/or shared-management capacity. Gamification techniques were notably absent, as was the use of psychotherapeutic approaches, such as cognitive behavioural therapy and motivational interviewing.Conclusion:Various services are offered by multiple patient/parent organisations with an interest in JIA across the UK and Ireland to promote self- and shared-management. However, no single organisation provides a comprehensive package of services to address the entire information, education, and support needs of children and young people with JIA, or their families. Furthermore, clarity of services offered across the sector is poor. Enhanced collaboration between organisations, together with a clearer focus on enhancing self- and shared-management of JIA across the lifecourse, may help to improve the offering to children, young people, and their families, so that they can more competently manage JIA.References:[1]Sattoe et al. Self-management interventions for young people with chronic conditions: A systematic overview. Patient Education and Counseling 2015; 98(6): 704-715.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., Veronica Swallow: None declared, Linda Milnes: None declared.

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

Theoretical and contextual considerations for self-management strategies of children and adolescents with chronic diseases: An integrative review

2021 ◽  
pp. 136749352110136
Author(s):  
Logan J Camp-Spivey ◽  
Ayaba Logan ◽  
Michelle Nichols
Keyword(s):  
Children And Adolescents ◽  
Chronic Diseases ◽  
Management Strategies ◽  
Healthcare Providers ◽  
Integrative Review ◽  
Self Management ◽  
Intervention Delivery ◽  
Management Interventions ◽  
Technological Platforms ◽  
Management Behaviors

The primary aim of this integrative review was to critically evaluate and synthesize published, peer-reviewed research to better understand self-management strategies of children and adolescents with chronic diseases. This review was guided by Whittemore and Knafl’s methodological framework. The Pediatric Self-management Model provided the theoretical framework for understanding how self-management behaviors operate within the domains of individual, family, community, and healthcare systems. In June 2019, the electronic databases of EBSCOhost, PubMed, and Scopus, along with reference lists of applicable studies, were searched for appropriate publications. The initial searches yielded 920 citations. Of these, 11 studies met inclusion criteria. A key finding was that involving children and adolescents in the design and delivery phases of interventions was most effective in improving self-management when the interventions did not outweigh cognitive ability or maturity level. In addition, incorporating self-efficacy promotion into self-management interventions may lead to greater sense of responsibility and improved health outcomes. In terms of intervention delivery of self-management strategies, the use of technological platforms and devices was revealed as a promising avenue for youth. A final implication was the importance of family members, peers, and healthcare providers in supporting children and adolescents in adopting self-management behaviors.

FRI0562 THE PERSPECTIVE OF YOUNG PEOPLE WITH INFLAMMATORY ARTHRITIS ON PATIENT REPORTED OUTCOME MEASURES: RESULTS OF A EUROPE-WIDE SURVEY

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 883-883
Author(s):  
A. Alunno ◽  
E. Mosor ◽  
T. Stamm ◽  
P. Studenic
Keyword(s):  
Young People ◽  
Qualitative Study ◽  
Personal Experience ◽  
Large Scale ◽  
Young Patients ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Research Support ◽  
Patient Reported

Background:Although patient-reported outcome measures (PROMs) are widely used in clinical practice and research, it is unclear if these instruments adequately cover the perspective of young people (18-35 years) with inflammatory arthritis (IA). We recently performed focus groups on PROMs with 53 young IA patients from 4 European countries, but the perspective of these patients has never been explored on a large scale.Objectives:To explore personal experience, opinions and beliefs of young people with IA across Europe concerning PROMs content, characteristics and ways of administration in order to inform EULAR points to consider (PtC) for including the perspective of young patients with IA into PROMs.Methods:Based on the results of our previous qualitative study, a task force including patients, rheumatologists and health professionals developed an online survey. The survey covered personal experience, preferences and opinions concerning PROMs. After being pilot tested and revised accordingly, the survey was distributed through the EULAR people with arthritis and rheumatism in Europe (PARE), Young PARE networks and the Emerging EULAR Network (EMEUNET).Results:547 people (88% females) from 29 countries aged 18-35 years with a diagnosis of juvenile idiopathic arthritis, rheumatoid arthritis, Still’s disease, psoriatic arthritis or spondyloarthritis completed the survey (Figure 1). Thirty-seven percent of respondents reported they never filled a PROM. A North-South and West-East Europe gradient was observed (30.4% vs 56.3% and 25.5% vs 58.8% respectively). Figure 2 outlines key findings of our survey. Among respondents having filled PROMs (n=313), two thirds perceived their access to PROM results useful for self-management of their health. Discomfort while filling PROMs was an issue for nearly half of the respondents, as questions were perceived as scaring or not relevant. This discomfort, the fear of judgement, or inadequate assessed time frames were major reasons for difficulties in translating the health experience into a rating scale. Still 75% use their own experience in the past as reference. Among several reasons, people scored differently from what they felt to emphasize how much better or worse they felt from previous assessment. Concerning preferences of numerical rating scales (NRS) or visual analogue scales (VAS) explored in all respondents regardless having ever filled in PROMs, those in favour of VAS mainly reasoned this by having more possibilities to select and those favouring NRS by better readability and interpretation. Maintaining a sitting position, preparing food, doing physical activity, intimacy and sleep problems were the items selected most frequently in the survey as in the qualitative study to be included in PROMs. The implementation of discussion on self-management, education/work and support possibilities at regular clinic visits was considered important by over 60% of responders. Overall, electronic capturing of PROMs was preferred over paper-based questionnaires (57% vs 13%).Conclusion:Our survey explored for the first time the personal experience and opinions of young people with IA concerning PROMs on a large scale and confirmed the results obtained in the qualitative study. This survey informed the EULAR PtC for including the perspective of young patients with IA into PROMs.References:[1] Mosor E et al. Arthritis Rheumatol. 2019; 71 (suppl 10)Disclosure of Interests:Alessia Alunno: None declared, Erika Mosor: None declared, Tanja Stamm Grant/research support from: AbbVie, Roche, Consultant of: AbbVie, Sanofi Genzyme, Speakers bureau: AbbVie, Roche, Sanofi, Paul Studenic Grant/research support from: Abbvie

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