ABSTRACT
Good communication is central to good healthcare. As a result of poor communication between parents and healthcare professionals (HCPs) in clinical settings, this study aimed to address this problem by developing a communication tool to empower parents and act as a prompt for HCPs to talk about the child's care and gather information at the point of admission to hospital about what is important to families, therefore supporting patient-centered communication. A design thinking process was used to develop a physical copy of Chloe's card and evaluate its use. Design thinking is a problem-solving approach, which uses an empathetic lens to integrate viewpoints of different stakeholders throughout the process of creating solutions. Design thinking involves five processes: (1) empathise-including a literature review and data synthesis, (2) define-by completing semi-structured interviews with parents about their experience of communication and HCPs perceptions of parent's experience of communication, (3) ideate-iterate the design of Chloe's card with parents and HCPs, (4) prototype-develop the design of Chloe's card, and (5) test-pilot test in clinical practice. Results from this initial study suggest that a small hand-held card, with emoticons and a place to write concerns, was acceptable to parents and feasible to use in clinical practice. Parents do not always feel heard by HCPs and a tool such as Chloe's card may help facilitate sharing of information about matters important to them and their child. However, some HCPs felt the need for a communication tool undermined their clinical skills. Feedback from HCP participants suggests that the idea of Chloe's card was acceptable and perceived as potentially being useful in clinical practice. Further work is required, as part of a larger study, to further refine this communication tool, identify those parents who would benefit most from Chloe's card, as well as to further refine the HCP process prior to implementing it into clinical settings. It was noted future iterations would benefit from a digital version linked with a child's electronic record, as well as multi-language versions and information for parents.
ABSTRACT
Background: Chronic pain in young people is prevalent in the UK. Young people are digital natives, yet there has not been any online intervention developed in a UK context to help them manage chronic pain. Key to understanding the context in which young people engage with online interventions is better understanding their internet use for chronic pain management. The overarching aim of this study was to explore young peoples' experiences of searching for information about chronic pain using the internet. This included experiences of using search engines (e.g. Google), health information websites (e.g. the National Health Service [NHS] website) and social media (e.g. Facebook and Instagram). Methods: Semi-structured interviews were conducted with young people aged 16-24-years (n = 24), online, via Microsoft (MS) Teams. The study was advertised online and via patient partner charities. Interview data was analysed using reflexive thematic analysis. Results: Participants presented with a variety of chronic pain conditions, including joint hypermobility syndrome (n = 6), chronic headache and/or migraine (n = 4) and fibromyalgia (n = 3). Four themes were generated: 'Trustworthy information, or experiences?', 'Diagnostic labels in a digital world', 'The online chronic pain community' and 'A mind and body approach to self-management'. Young people trust advice from others in their online community and having a diagnostic label help them find relevant pain management strategies and support networks online. Conclusions: This study is the first qualitative exploration of internet use in UK-based young people with chronic pain. Findings highlight the importance of considering internet use when developing new online interventions for young people with pain and that internet use, particularly social media use, is an important psychosocial consideration in pain management. Young people should be encouraged to verify practical pain management techniques found online with their doctor and be empowered in the safe use of appropriate psychology-based self-management resources.
ABSTRACT
BACKGROUND: Adolescent chronic pain is prevalent, and interdisciplinary treatment is recommended. Although it is well known that technology is a key part of adolescents' daily lives, there have not been any online, interdisciplinary interventions developed for adolescents with chronic pain in a UK healthcare context. Little is known about how adolescents currently use online resources to manage chronic pain, or what guidance they seek. METHODS: Ninety-five participants from the community answered this mixed-methods, online survey (adolescent n = 54, parent n = 41), which assessed the needs of UK-based adolescents for a new online chronic pain management resource. RESULTS: Findings indicated that, at the time of the survey, adolescents frequently used social media platforms, such as Instagram, for chronic pain management. Desired techniques for a new interdisciplinary resource for adolescents included 'advice on explaining chronic pain to others' (86.7% of adolescents) and sleep hygiene (82.2% of adolescents), though access to a range of pain management techniques was desired. Qualitative results indicated endorsement of a new programme by adolescents and parents. CONCLUSIONS: Adolescents and parents had a positive outlook towards the development of a UK-specific online resource to help manage chronic pain. Such an intervention should aim to be made accessible via the National Health Service. Adolescent use of social media platforms to seek support for chronic pain requires further exploration in future research.
ABSTRACT
BACKGROUND: Many online interventions for paediatric chronic pain have been developed and evaluated. In accordance with the biopsychosocial model, the recommended treatment approach for chronic pain is multidisciplinary. Despite this, multidisciplinary components within existing online interventions have not been examined. The objective of the present review was to summarise and evaluate the content of existing online interventions for paediatric chronic pain by mapping intervention content to evidence-based guidelines for chronic pain management. METHODS: Interventions were identified using an updated systematic review. Nine chronic pain management strategies that reflect evidence-based guidance for multidisciplinary chronic pain management were defined by the authors, examples of which include 'pain education', 'activity pacing' and 'physiotherapy'. Identified interventions were then coded against the target strategies. These codes were compiled descriptively to provide an overview of how well each chronic pain management strategy was represented across the dataset, and which interventions represented the most strategies. RESULTS: Thirty-five articles, relating to 13 unique interventions for paediatric chronic pain management were identified; few encompassed a complete multidisciplinary approach. Many CBT-based interventions included multidisciplinary elements. Across interventions, physiotherapy and non-pharmacological physical therapies were the least represented chronic pain management strategies. CONCLUSIONS: The content analysis revealed a lack of online interventions encompassing complete multidisciplinary pain management. It is important that new interventions for paediatric chronic pain management are evidence-based and reflect current best practice guidelines. Established intervention development approaches should be utilised and include a process evaluation to help identify which intervention components are effective in which contexts. SIGNIFICANCE: This content analysis of online interventions for paediatric chronic pain highlights the need for multidisciplinary practices in pain management to be translated into online interventions. Improving the availability of pain management resources is essential for many families who cannot attend specialist pain clinics, particularly in the context of the COVID-19 pandemic. There is potential for new resources, as well as for established resources, to be further developed to deliver a broader range of pain management content.
