Child and family adaptation to Juvenile Idiopathic Arthritis - a systematic review of the role of resilience resources and mechanisms

Background: Juvenile Idiopathic Arthritis (JIA) is the most common rheumatic disease in childhood, with chronic pain being a main symptom. JIA symptoms can lead to substantial disability in children and their families. While preliminary evidence reveals the potential beneficial role of resilience in dealing with chronic pain, research on the role of resilience in how families of a child with JIA cope with pain-related symptoms is scant and dispersed. Objectives: Using the framework of the Ecological Resilience-Risk Model, this review aims to identify (1) family characteristics that are associated with both risk and resilience in children with JIA and (2) the contribution of individual and parental resilience mechanisms and resources to resilience outcomes in children with JIA and their families. Methods: MEDLINE, EMBASE, EBSCO, Psycharticles, and PsycINFO were systematically searched. Longitudinal, cross-sectional, and treatment studies written in English with a focus on resilience resources and/or mechanisms in families of a child (6-18 years) with JIA were included. The original search (July 2016) produced 415 articles, with a final sample of 6 articles remaining after screening. An updated search (July 2018) did not identify new articles, but identified one extra article through personal communications. The 7 articles were included in a narrative review and study quality was assessed. Results: Limited research was available on the role of family characteristics, with just one study revealing how family dysfunction is related to reduced child resilience. Studies evaluating the role of individual resilience mechanisms and resources most commonly assessed resilience outcomes in terms of recovery and sustainability outcomes, such as health-related quality of life (HRQL) and functional disability. The findings revealed that children’s psychological flexibility, self-efficacy, adherence, pain acceptance and perceived social support contribute to resilience outcomes. Findings were inconclusive for the influence of coping strategies, such as seeking social support. Conclusions: While our knowledge is growing, a better understanding of how familial and individual resilience resources and mechanisms influence adjustment to chronic pain as part of JIA is needed and can stimulate development of targeted interventions to enhance outcomes for children with JIA

Family resilience and adaptive coping in children with juvenile idiopathic arthritis: protocol for a systematic review

Background  This systematic review is the first step in a study investigating the resilience methods and processes in families of children with juvenile idiopathic arthritis. In particular, this review will focus on chronic or persistent pain, as a common symptom of juvenile idiopathic arthritis, which is the most common rheumatic disease in childhood. The experience of persistent pain can add to the functional disability associated with juvenile idiopathic arthritis. Resilience has relevance to all areas of paediatric psychology, and targeted attention to child, sibling, and parent strengths within the context of paediatric chronic pain and juvenile idiopathic arthritis in particular will augment the field on numerous levels. The objective is to determine which resilience processes are associated with a favourable quality of life in terms of academic, communication, emotional, interpersonal, physical, psychological, and social well-being in families of children with chronic pain associated with JIA.  Methods/design  This systematic review will be conducted and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement and the PRESS (Peer Review of Electronic Search Strategies) guideline.  Longitudinal, cross-sectional, and treatment studies written in English will be included, as will grey literature (i.e. conference abstracts and dissertations).  Studies involving participants who are 6–18years of age, have been diagnosed with juvenile idiopathic arthritis, are experiencing chronic pain, and are currently undergoing treatment will be included regardless of sex, arthritis type, and type of treatment. Studies including siblings who are 6–18years of age and the patient’s parents will be included.  Discussion  Research exploring resilience within the adult population is accruing. Shifting our focus to protective factors of resilience in the context of paediatric chronic pain, specifically juvenile idiopathic arthritis, is a novel and promising pursuit that has the potential to optimize and inform future clinical practice and interventions. A better understanding of the role of reliance in family adaptation will facilitate the development of more effective treatment approaches and lay the foundation for more effective self-management in paediatric chronic pain.  Systematic review registration  This protocol is registered with the International Prospective Register of Systematic Reviews (PROSPERO) database (registration: CRD42016047226)

Self-management needs of Irish adolescents with Juvenile Idiopathic Arthritis (JIA): how can a Canadian web-based programme meet these needs?

Background Juvenile Idiopathic Arthritis (JIA) affects over 1000 children and adolescents in Ireland, potentially impacting health-related quality-of-life. Accessible self-management strategies, including Internet-based interventions, can support adolescents in Ireland where specialist rheumatology care is geographically-centralised within the capital city. This study interviewed adolescents with JIA, their parents, and healthcare professionals to (i) explore the self-management needs of Irish adolescents; and (ii) evaluate the acceptability of an adapted version of a Canadian JIA self-management programme (Teens Taking Charge: Managing Arthritis Online, or TTC) for Irish users. Methods Focus groups and interviews were conducted with Irish adolescents with JIA (N = 16), their parents (N = 13), and Irish paediatric healthcare professionals (HCPs; N = 22). Adolescents were aged 12–18 (Mage = 14.19 years), and predominantly female (62.5%). Participants identified the needs of adolescents with JIA and evaluated the usefulness of the TTC programme. Data were analysed using a thematic analysis approach. Results Five themes emerged: independent self-management; acquiring skills and knowledge to manage JIA; unique challenges of JIA in Ireland; views on web-based interventions; and understanding through social support. Adolescents acknowledged the need for independent self-management and gradually took additional responsibilities to achieve this goal. However, they felt they lacked information to manage their condition independently. Parents and adolescents emphasised the need for social support and felt a peer-support scheme could provide additional benefit to adolescents if integrated within the TTC programme. All participants endorsed the TTC programme to gain knowledge about JIA and offered suggestions to make the programme relevant to Irish users. Conclusions There is scope for providing easily-accessible, accurate information to Irish families with JIA. The acceptability of adapting an existing JIA self-management intervention for Irish users was confirmed

Additional file 1: of Family resilience and adaptive coping in children with juvenile idiopathic arthritis: protocol for a systematic review

PRISMA-P 2015 Checklist. This checklist is approved for use with systematic review protocol submissions. (DOCX 32 kb