‘It’s my back…’; developing the coming to spinal clinic resource to improve the health literacy of young people with adolescent idiopathic scoliosis and their parents

Abstract

This study focussed on identifying the key concerns and information needs of young people with Adolescent Idiopathic Scoliosis (AIS) and their parents and examined what resources might help improve young people’s ‘participativeness’ and health literacy during clinic consultations. A qualitative participatory design underpinned the study. Workshops involving multiple methods were used to engage with young people with AIS and their parents, who were recruited through a regional children’s hospital. The study design was informed by patient and public consultation with eight young people and two parents. 10 young people (aged 14–16 years) and 11 of their parents participated in the study. Young people and their parents reported uncertainty and anxiety before coming to clinic and faced issues participating in the consultation, being involved in decision-making and understanding the information and language. These challenges resulted in unmet information needs. Young people’s health literacy relating to an AIS diagnosis and treatment is facilitated by them being prepared and informed before coming to clinic and be actively supported to be involved during the consultation. We collaboratively developed the ‘Coming to Spinal Clinic’ resource to help young people with AIS and parents prepare for and get the most out of their visit.

Health literacy and musculoskeletal disorders in adolescents: a scoping review

“…Ten studies mentioned or presented definitions explicitly related to HL 31–40. The definitions of the WHO,41 Nutbeam,42 and the US Department of Health and Human Services43 were used to present HL as an overall framework.…”

“…Eleven studies explored finding and accessing musculoskeletal health-related information 35 37 40 44 47–53. Among these studies, qualitative approaches were the most frequent design.…”

“…A recurrent finding was that adolescents primarily seek information from human resources, such as parents and healthcare professionals (HCPs). Family and friends were reported as an important source of information in four studies 40 44 48 50. Information was also sought from general practitioners, physiotherapists and school nurses 44 47 49 50.…”

“…Nine studies reported that adolescents searched the internet for musculoskeletal health information,40 44 47–53 but only four of these elaborated on what kind of information the adolescents searched for. All four studies included participants with an MSD, such as low back pain, juvenile idiopathic arthritis or scoliosis.…”

Using Creative Approaches and Facilitating Remote Online Focus Groups With Children and Young People: Reflections, Recommendations and Practical Guidance

“…Research with CYP should be drawing on more child-led approaches (Urbina-Garcia et al, 2022) and creative methodologies, such as drawing, writing, working on activities, games etc. can be successfully embedded within focus groups with CYP to help organise discussion and maintain concentration and interest (Bray et al, 2022; Wilkinson et al, 2021). Crucially, it can also aid meaningful inclusion of CYP with varying needs and preferences by offering flexibility regarding differences in cognitive, linguistic, social, and psychological competencies, and promote the voices of those who may be less confident within a focus group setting by engaging them in activities (Wilkinson et al, 2021).…”