Living with epilepsy in adolescence-A qualitative study of young people's experiences in Singapore: Peer socialization, autonomy, and self-esteem
Living with epilepsy in adolescence-A qualitative study of young people's experiences in Singapore: Peer socialization, autonomy, and self-esteem
复制标题
DOI：
10.1111/cch.12648
复制
发表时间：
2019-03-01
影响因子：
1.9
通讯作者：
Haase, Anne M.
中科院分区：
文献类型：
--
作者：
Chew, Judith;Carpenter, John;Haase, Anne M.
对儿童癫痫影响的定量研究的系统评价已经确定，与同龄人相比，儿童癫痫与较高水平的精神病诊断、外化和内化问题、较低的健康相关生活质量、社会能力和较差的学术成就有关。然而，人们对年轻人患有癫痫的经历及其对他们自身发展的影响知之甚少。方法对15名13 ~ 16岁青少年进行半结构式访谈。参与者被招募作为一个更大的混合方法研究的一部分，研究个人和家庭对年轻癫痫患者结局的影响。这些年轻人参加了新加坡KK妇女儿童医院的癫痫诊所。数据管理和分析的框架方法涉及主题的归纳和演绎生成。结果从年轻人的访谈结果提供了深入的描述所遇到的压力的情况。强调了损伤的严重程度与其对独立性、自主性和社会发展等关键发展任务的影响之间的相互联系。癫痫发作和与疾病有关的需求扰乱了他们的日常运作，并对他们完成这些任务的能力提出了挑战。除了这些不利影响外，青年人遭受社会排斥的经历还受到社会和环境因素的影响，这些因素是参与的系统性障碍。反过来，这也会影响他们的自尊。然而，年轻人报告了积极的经历，如家人和朋友的支持，这是抵御慢性疾病生活压力的保护因素。结论癫痫患者的需求影响着青少年生活的各个领域。为了全面了解青年人参与或被排斥的情况，有必要考虑损害影响、行动障碍和存在障碍。
Background Systematic reviews of quantitative research on the effects of childhood epilepsy have established its association with higher levels of psychiatric diagnosis, externalizing and internalizing problems, lower health-related quality of life, social competence, and poorer academic achievements, compared with their peers. However, much less is known about young people's experiences of living with epilepsy and its impact on their development from their own perspectives. Methods Semistructured interviews were conducted with 15 young people aged between 13 and 16 years. Participants were recruited as part of a larger mixed methods study examining individual and family influences on outcomes for young people with epilepsy. These young people attended an epilepsy clinic in KK Women's and Children's Hospital, Singapore. The framework approach to data management and analyses involved both inductive and deductive generation of themes. Results Findings from young people's interviews provided in-depth descriptions of stressful circumstances encountered. Interconnectedness between severity of the impairment and its impact on key developmental tasks, such as independence, autonomy, and social development, were emphasized. Seizures and illness-related demands disrupted their day-to-day functioning and challenged their abilities to meet these tasks. In addition to these impairment effects, young people's experiences of social exclusion were also affected by social and environmental factors, which act as systemic barriers to participation. In turn, this has an effect on their self-esteem. Nevertheless, young people reported positive experiences, such as support from both family and friends, which served as protective factors against the stress of living with a chronic medical condition. Conclusion The demands of epilepsy affect various domains of young people's lives. In order to obtain a holistic understanding of young people's inclusion or exclusion to participation, it is necessary to consider impairment effects, barriers to doing, and barriers to being.