Coproducing Health Information Materials With Young People: Reflections and Lessons Learned.

BACKGROUND: This paper describes and critically reflects on how children and young people (CYP) acted as public advisors to coproduce health information materials about Long Covid for younger audiences. This work was underpinned by the Lundy model, a framework which provides guidance on facilitating CYP to actively contribute to matters which affect them. METHODS: Coproduction activity sessions took place with CYP in schools as well as video conferences with a CYP stakeholder group and CYP with Long Covid. Activities encouraged CYP to focus on the content, format, and design of materials and used problem-based and collaborative learning to encourage engagement with the project. Using a range of methods and open discussion, CYP codesigned a series of Long Covid health information materials for younger audiences. RESULTS: Sixty-six CYP (aged 10-18), and two young adults were involved. CYP codesigned specifications for the final materials and provided feedback on early designs. The project led to the development of a series of health information materials targeted at CYP: a short social media campaign with six short videos and a 12-page illustrated leaflet about Long Covid; released on social media and distributed in local area. All the CYP were positive about the project and their involvement. DISCUSSION: Involving CYP led to the development of innovative and engaging information materials (influence). Developing rapport was important when working with CYP and this was facilitated by using approaches and activities to establish an environment (space) where the CYP felt comfortable sharing their views (voice) and being listened to (audience) by the adults in the project. Working with external groups who are willing to share their expertise can help the meaningful involvement of voices 'less heard'. PUBLIC CONTRIBUTION: One CYP coapplicant contributed to the project design and facilitation of PPIE sessions, 64 CYP were involved in the PPIE sessions to design and feedback on materials. Two young adult media producers worked with CYP to produce these materials, another CYP supported this process. Three public contributors were involved in the preparation of this manuscript.

Experiences and care needs of children with long COVID: a qualitative study.

BACKGROUND: Long COVID, the patient-preferred term, describes symptoms persisting after an acute episode of COVID-19 infection. Symptoms in children and young people (CYP) can affect daily routine, with broader impacts on education, health-related quality of life, and social activities, which may have long-term effects on health and wellbeing. AIM: To explore the lived experiences and care needs of CYP with long COVID from the perspectives of CYP with long COVID, their parents, and professionals associated with the care of children and families living with the condition. DESIGN & SETTING: CYP and their parent or carer were invited for interview following participation in a cohort study, which recruited the sample from a primary care setting. METHOD: Interviews were carried out with four CYP with long COVID (all female, aged 10-17 years); three interviews included a parent. Two focus groups were conducted, which included seven professionals involved with care of CYP or long COVID, from a range of disciplines. Interviews and focus groups were transcribed verbatim, and data analysed thematically using constant comparison techniques. RESULTS: The three main themes presented are as follows: living with long COVID; uncertainty surrounding long COVID; and seeking help for symptoms. CONCLUSION: Long COVID can severely impact the lives of CYP and their families. CYP and their families need to be listened to by professionals and have any uncertainties acknowledged. It is imperative that agencies working with them understand the condition and its impact, and are able to offer support where needed.

Chronic widespread pain in children and adolescents presenting in primary care: prevalence and associated risk factors.

ABSTRACT: A significant proportion of children/adolescents report chronic widespread pain (CWP), but little is known about clinically relevant CWP or what factors lead to onset in this population. Objectives were to report the primary care consultation prevalence of CWP and investigate risk factors associated with onset. A validated algorithm for identifying CWP status from primary care electronic healthcare records was applied to a child or adolescent population (aged 8-18 years). The algorithm records patients who have recurrent pain consultations (axial skeleton and upper or lower limbs) or those with a nonspecific generalised pain disorder (eg, fibromyalgia). Prevalence was described, and a nested case-control study was established to identify risk factors associated with CWP onset using logistic regression producing odds ratios (ORs) and 95% confidence intervals (95% CIs). Two hundred seventy-one children or adolescents were identified with CWP, resulting in a 5-year consultation prevalence of 3.19%. Risk factors significantly associated with CWP onset were as follows: mental health (eg, anxiety/neurosis consultations), neurological (eg, headaches), genitourinary (eg, cystitis), gastrointestinal (eg, abdominal pain), and throat problems (eg, sore throats). Children or adolescents with 1 or 2 risk factors (OR 2.15, 95% CI 1.6-2.9) or 3 or more risk factors (OR 9.17, 95% CI 5.9-14.3) were at significantly increased odds of CWP onset compared with those with none. Findings show a significant proportion of the child or adolescent primary care population has CWP. Most risk factors involved pain-related conditions, suggesting potential pathways of pain development. Further work is now needed to better understand the development of CWP in children and adolescents.