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 . 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: 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
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.