Faculty of Health Social Care and Medicine, Edge Hill University, Ormskirk, UK.
Alder Hey Children's NHS Foundation Trust, Liverpool, UK.
J Child Health Care. 2023 Dec;27(4):628-642. doi: 10.1177/13674935221083767. Epub 2022 Apr 18.
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 coming to clinic and be actively supported to be involved 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.
本研究旨在确定青少年特发性脊柱侧凸 (AIS) 青少年及其家长的主要关注点和信息需求，并探讨哪些资源可能有助于提高青少年在就诊期间的“参与度”和健康素养。该研究采用定性参与式设计。通过区域儿童医院招募了 AIS 青少年及其家长，他们参与了多个方法的研讨会。该研究设计得到了 8 名青少年和 2 名家长的患者和公众咨询的支持。研究共招募了 10 名青少年（14-16 岁）和 11 名家长。青少年及其家长在就诊前报告了不确定性和焦虑，并且在参与咨询、参与决策以及理解信息和语言方面存在问题。这些挑战导致了未满足的信息需求。青少年的 AIS 诊断和治疗相关健康素养可以通过他们在就诊前做好准备和知情，以及在咨询中得到积极支持来实现。我们共同开发了“就诊脊柱科”资源，以帮助 AIS 青少年及其家长做好准备并充分利用就诊机会。
