Department of Nursing, Children's Hospital of Chongqing Medical University, Chongqing, China.
Neurological Medical Center, Children's Hospital of Chongqing Medical University, Chongqing, China.
Epilepsy Behav. 2020 Dec;113:107576. doi: 10.1016/j.yebeh.2020.107576. Epub 2020 Nov 21.
Given the importance of adolescents' participation in the care of their chronic diseases during their transitional period in the healthcare system, the present study investigated the degree of participation in healthcare behavior by Chinese adolescents with chronic epilepsy and identified factors that should be addressed by health interventions.
The study used a convenience sample of 1238 adolescent patients with epilepsy, who were hospitalized in 17 tertiary A-level children or maternal and child specialty hospitals in China between January 2017 and March 2020. Several scales were used to measure their degree of participation in healthcare behavior and the factors that influence it. Data collection was conducted after uniform training of the investigators. The adolescents who met the inclusion and exclusion criteria could scan the QR code of the questionnaire via a mobile phone.
The age of the participants ranged from 12.2 to 17.8 years (mean 14.2 years), and the sample had a male-to-female ratio of 1.25:1. The patients' average total score of participation in healthcare behavior was 125.58 (SD = 12.25), which was lower than the norm for China. Their scores on the six dimensions of participation were highest for information interaction, followed in descending order by medical decision-making, treatment and care, appeal, diagnosis and treatment decision-making, and questioning supervision. Multiple linear regression found significant associations between health-care participation and five personal and disease variables (gender, age, course of disease, number of comorbid diseases, type of family structure), self-efficacy, and coping styles (cognitive-palliative and acceptance), which explained 52.1% of the variance in patients' total scores on participating in healthcare behavior.
The participation of young Chinese patients with epilepsy in transitional healthcare behavior needs to be improved. Participation was positively associated with being female, a longer course of disease, fewer comorbidities, and living in a nuclear family. Patients who used cognitive-palliative and acceptance coping styles and those who had higher self-efficacy also had significantly higher levels of participation in healthcare behavior. The study provides useful reference points for adolescents with chronic disease to participate in healthcare programs, in order to achieve a smooth transition from childhood to adulthood.
鉴于青少年在医疗体系过渡期间参与慢性病护理的重要性，本研究调查了中国青少年慢性癫痫患者参与医疗保健行为的程度，并确定了健康干预应解决的因素。
本研究采用便利抽样法，选取 2017 年 1 月至 2020 年 3 月期间在中国 17 家三级 A 级儿童或妇幼专科医院住院的 1238 名青少年癫痫患者作为研究对象。使用多个量表来衡量他们参与医疗保健行为的程度以及影响因素。数据收集在对调查员进行统一培训后进行。符合纳入和排除标准的青少年可以通过手机扫描问卷的二维码。
参与者的年龄为 12.2 至 17.8 岁（平均 14.2 岁），样本的男女比例为 1.25:1。患者参与医疗保健行为的总分平均为 125.58（SD=12.25），低于中国的常模。他们在参与医疗保健行为的六个维度中的得分最高的是信息交互，其次是医疗决策、治疗和护理、申诉、诊断和治疗决策以及质疑监督。多元线性回归发现，健康照护参与度与五个个人和疾病变量（性别、年龄、病程、共病数量、家庭结构类型）、自我效能感和应对方式（认知-缓和和接受）之间存在显著关联，这些变量解释了患者参与医疗保健行为总分的 52.1%的方差。
中国青少年癫痫患者过渡性医疗保健行为的参与度有待提高。参与度与性别、病程较长、共病较少和生活在核心家庭呈正相关。使用认知-缓和和接受应对方式以及自我效能感较高的患者，其医疗保健行为参与度也显著较高。本研究为慢性病青少年参与医疗保健计划提供了有用的参考点，以实现从儿童到成年的顺利过渡。
