Departments of Dermatology, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB, Groningen, The Netherlands.
Department of Health Psychology, HPC FA12, University of Groningen, POB 196, 9700 AD, Groningen, The Netherlands.
Orphanet J Rare Dis. 2022 Aug 13;17(1):313. doi: 10.1186/s13023-022-02462-y.
Epidermolysis bullosa is a rare, often severe, genetic disorder characterized by fragility of the skin and mucous membranes. Despite the important role of parents during wound care, an essential factor in adapting to this disease, studies focusing on the parent-child relationship during wound care are scarce. The current study is aimed at addressing this gap.
A quantitative study among 31 children (n = 21 ≤ 17 years; n = 10 17-25 years) and 34 parents (including 27 parent-child dyads) was conducted to examine the relationship between pain, itch, anxiety, positive and negative feelings, and coping strategies assessed with the newly developed Epidermolysis Bullosa Wound Care List. The majority of the analyses were descriptive and the results were interpreted qualitatively because of the small sample size.
Children and parents both showed significantly more positive (i.e. 'protected', 'proud', 'calm', 'connected to each other' and 'courageous') than negative feelings (i.e. 'helpless', 'angry', 'insecure', 'guilty', 'gloomy' and 'sad') during wound care, with parents reporting both feelings more than children. The more children experienced pain, the more they were anxious, had negative feelings, were inclined to use distraction, to postpone wound care and to cry. The more parents experienced feelings (either positive or negative), the more likely they sought distraction. With regard to child-parent dyads the results showed that the more children expressed anxiety, the more parents experienced negative feelings. Furthermore, those who reported more negative feelings were more likely to hide their feelings, while those who reported more positive feelings were more inclined to show their feelings. Pain, itch and anxiety in the child were associated with more distraction or postponement of wound care by the parent.
This study underlines the importance of paying attention to the relationship between feelings and coping strategies in child-parent dyads in the management of pain and anxiety during wound care. Further research could provide more insight how these feelings and coping strategies are related to the psychological well-being of both the child and the parent in the short term as well as in the long term.
大疱性表皮松解症是一种罕见的、通常严重的遗传性疾病，其特征是皮肤和黏膜脆弱。尽管父母在伤口护理中起着重要作用，这是适应这种疾病的重要因素，但专注于伤口护理期间亲子关系的研究很少。本研究旨在解决这一差距。
对 31 名儿童（n=21≤17 岁；n=10 17-25 岁）和 34 名父母（包括 27 对亲子）进行了一项定量研究，以检查用新开发的大疱性表皮松解症伤口护理清单评估的疼痛、瘙痒、焦虑、积极和消极感受以及应对策略之间的关系。由于样本量小，大多数分析都是描述性的，结果是定性解释的。
儿童和父母在伤口护理期间都表现出明显更多的积极感受（即“受保护”、“自豪”、“平静”、“彼此相连”和“勇敢”）而不是消极感受（即“无助”、“愤怒”、“不安”、“内疚”、“忧郁”和“悲伤”），父母的感受比孩子更强烈。儿童经历的疼痛越多，他们就越焦虑，负面感受就越多，就越倾向于分心、推迟伤口护理和哭泣。父母感受到的情绪（无论是积极的还是消极的）越多，他们就越有可能寻求分心。关于儿童-父母对子，结果表明，儿童表达的焦虑越多，父母感受到的负面情绪就越多。此外，那些报告更多负面感受的人更倾向于隐藏自己的感受，而那些报告更多积极感受的人则更倾向于表达自己的感受。孩子的疼痛、瘙痒和焦虑与父母更多地分心或推迟伤口护理有关。
本研究强调了在管理伤口护理期间的疼痛和焦虑时，关注亲子对子中感受和应对策略之间关系的重要性。进一步的研究可以提供更多的见解，了解这些感受和应对策略如何与孩子和父母的短期和长期心理健康相关。
