Constantinou Christina, Payne Nicola, van den Akker Olga, Inusa Baba
Psychology Department, Middlesex University, London, UK.
Evelina London Children's Hospital, Guy's and St Thomas NHS Foundation Trust, London, UK.
Psychol Health. 2023 Jan;38(1):125-146. doi: 10.1080/08870446.2021.1955119. Epub 2021 Aug 2.
This study explored the health-related quality of life (HRQL) and health behaviours of children with sickle cell disease (SCD) and healthy siblings, drawing on Gap theory, which suggests HRQL is the discrepancy between current and ideal selves.
Thirty-two interviews, facilitated by children's drawings of their current and ideal selves were thematically analysed.
Two themes were identified. First, limitations of SCD and adjusted expectations. Children with SCD report some discrepancy in HRQL as they would like to participate in more physical activity, but overall, they appear to have normalised their condition and adjusted their expectations in the context of the limits of their condition. Healthy siblings worry about their sibling and have greater expectations about engaging in adventurous activities and for their future. Second, coping with SCD. Children have limited social support, although children with SCD seek support from their mothers. They also modify health behaviours, like reducing exercise to help prevent and cope with sickle-related pain.
Children have some discrepancies in their HRQL but adjusted expectations among children with SCD may reduce discrepancy. Adapting health behaviours may help to cope with SCD but it is important that reductions in physical activity do not impair HRQL.
本研究利用差距理论探讨镰状细胞病（SCD）患儿及其健康兄弟姐妹的健康相关生活质量（HRQL）和健康行为，该理论认为HRQL是当前自我与理想自我之间的差异。
通过儿童绘制其当前自我和理想自我的图画辅助进行了32次访谈，并进行了主题分析。
确定了两个主题。第一，SCD的局限性和调整后的期望。患有SCD的儿童报告在HRQL方面存在一些差异，因为他们希望参加更多体育活动，但总体而言，他们似乎已适应自身状况，并在自身状况限制的背景下调整了期望。健康的兄弟姐妹担心他们患病的兄弟姐妹，对参与冒险活动和自己的未来有更高期望。第二，应对SCD。儿童获得的社会支持有限，尽管患有SCD的儿童会向母亲寻求支持。他们还会改变健康行为，比如减少锻炼以帮助预防和应对与镰状细胞相关的疼痛。
儿童在HRQL方面存在一些差异，但患有SCD的儿童调整后的期望可能会减少差异。调整健康行为可能有助于应对SCD，但重要的是体育活动的减少不能损害HRQL。
