Tuyishimire Benjamin, Niyonsenga Japhet, Mutamuliza Janvière, Kanazayire Clementine, Ntete Jeanne Marie, Mutesa Leon, Mutabaruka Jean
Clinical Psychology Department, College of Medicine and Health Sciences, University of Rwanda.
Human Genetics Unit, Rwanda Military Hospital.
Rwanda J Med Health Sci. 2024 Jul 31;7(2):165-177. doi: 10.4314/rjmhs.v7i2.6. eCollection 2024 Jul.
This study addresses a critical gap in research by examining the psychosocial impact on parents of children with genetic diseases compared to those with non-genetic conditions. While existing literature mainly focuses on medical aspects, it overlooks the emotional and mental health challenges faced by these parents.
The main objective was to investigate and compare levels of depression, anxiety, perceived stress, parenting stress, self-esteem, and intimate partner violence between parents of children with genetic diseases and parents of children with non-genetic conditions.
A cross-sectional comparative study was conducted with 100 caretakers of children with genetic diseases and 109 caretakers of patients with non-genetic diseases. Data were collected using standardized measures of self-esteem, intimate partner violence, perceived stress, and the Parenting Stress. Independent sample t-tests were performed to compare the means between the two groups.
Parents of children with genetic diseases exhibited significantly higher levels of depression (t(207) = 5.683, p < 0.001), anxiety (t(207)= 6.107, p<0.001), perceived stress (t(207)=11.680, p<0.001), parenting stress (t(207)= 12.893, p<0.001), and intimate partner violence (t(207)= 10.617, p < 0.001) compared to parents of children with non-genetic conditions. Low self-esteem was also more prevalent in the case group (t(207)=-14.565, p<0.001).
These findings underscore the urgent need for comprehensive support systems to address the psychosocial challenges faced by parents and caregivers of children with genetic diseases. Recognition and targeted interventions for these issues can significantly enhance healthcare services, benefiting both patients and their parents.
本研究通过考察与患有非遗传疾病儿童的父母相比，患有遗传疾病儿童的父母所面临的心理社会影响，填补了研究中的一个关键空白。虽然现有文献主要关注医学方面，但它忽视了这些父母所面临的情感和心理健康挑战。
主要目的是调查和比较患有遗传疾病儿童的父母与患有非遗传疾病儿童的父母之间的抑郁、焦虑、感知压力、育儿压力、自尊和亲密伴侣暴力水平。
对100名患有遗传疾病儿童的照料者和109名患有非遗传疾病患者的照料者进行了横断面比较研究。使用自尊、亲密伴侣暴力、感知压力和育儿压力的标准化测量方法收集数据。进行独立样本t检验以比较两组之间的均值。
与患有非遗传疾病儿童的父母相比，患有遗传疾病儿童的父母表现出显著更高水平的抑郁（t(207)=5.683，p<0.001）、焦虑（t(207)=6.107，p<0.001）、感知压力（t(207)=11.680，p<0.001）、育儿压力（t(207)=12.893，p<0.001）和亲密伴侣暴力（t(207)=10.617，p<0.001）。低自尊在病例组中也更为普遍（t(207)=-14.565，p<0.001）。
这些发现强调了迫切需要全面的支持系统来应对患有遗传疾病儿童的父母和照料者所面临的心理社会挑战。对这些问题的认识和有针对性的干预可以显著改善医疗服务，使患者及其父母都受益。
