Bray, L, Wilkinson, C, Bruce, C, Davidson, N, Satchwell, C and Carter, B (2022) ‘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. Journal of Child Health Care. pp. 1-15. ISSN 1367-4935

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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.

Item Type:	Article
Uncontrolled Keywords:	Young people; adolescent idiopathic scoliosis; children’s participation; consultation; health literacy; 1110 Nursing; 1114 Paediatrics and Reproductive Medicine; 1117 Public Health and Health Services
Subjects:	L Education > LB Theory and practice of education > LB1603 Secondary Education. High schools R Medicine > RJ Pediatrics
Divisions:	Education
Publisher:	SAGE Publications
SWORD Depositor:	A Symplectic
Date Deposited:	20 Sep 2022 13:38
Last Modified:	21 Sep 2022 10:42
DOI or ID number:	10.1177/13674935221083767
URI:	https://researchonline.ljmu.ac.uk/id/eprint/17617

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