“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. It's my back

Research output: Contribution to journalArticle (journal)peer-review

13 Downloads (Pure)

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. Study design was informed by patient and public consultation with eight young people and two parents. Ten young people (aged 14-16 years) and eleven 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.
Original languageEnglish
JournalJournal of Child Health Care
Early online date18 Apr 2022
DOIs
Publication statusE-pub ahead of print - 18 Apr 2022

Keywords

  • scoliosis
  • young people
  • Health literacy

Fingerprint

Dive into the research topics of '“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. It's my back'. Together they form a unique fingerprint.

Cite this