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尼日利亚中北部某三级医疗中心镰状细胞病患儿家庭功能及照料者心理社会负担研究

Family Functioning and Psychosocial Burden in Caregivers of Children with Sickle Cell Disease in a Tertiary Centre in North-Central Nigeria.

作者信息

Abdulkadir Mohammed, Alabi Kola M, Oyeleke Oyeronke A, Alabi Anthonia N, Ademola Christy O, Yusuf Adebayo R, Obalowu Ismaila A

机构信息

Department of Family Medicine, Kwara State University Teaching Hospital, Ilorin, Nigeria.

Department of Family Medicine, University of Ilorin Teaching hospital, Nigeria.

出版信息

Ethiop J Health Sci. 2024 Nov;34(6):530-535. doi: 10.4314/ejhs.v34i6.13.

Abstract

BACKGROUND

Sickle cell disease (SCD) is a chronic genetic disorder that has significant psychosocial consequences for both patients and their families. This study aimed to investigate family functioning and the psychosocial burden experienced by caregivers of children with SCD.

METHODS

This descriptive, cross-sectional study involved 170 caregivers of children with SCD, selected through systematic random sampling. Data were collected using both structured and semi-structured questionnaires. Family functioning was assessed using the Family APGAR (Adaptation, Partnership, Growth, Affectation, Resolve) while the psychosocial burden was evaluated using the Sickle Cell Disease Burden Instrument (SCDBI). Statistical analysis was performed using the Statistical Package for Social Sciences (SPSS) version 24.

RESULTS

The mean age of the participants was 34.7 years, and 83% were female. The majority of caregivers reported a high level of family functioning. However, significant psychosocial burden was observed in areas such as finances, disruption of routine family activities, and the caregivers' coping abilities. The impact on family interactions was minimal.

CONCLUSION

Most caregivers in this study demonstrated good family functioning. Although caring for a child with sickle cell disease imposed a significant psychosocial burden, the negative impact on family interactions was minimal.

摘要

背景

镰状细胞病(SCD)是一种慢性遗传疾病,对患者及其家庭都有重大的社会心理影响。本研究旨在调查SCD患儿照料者的家庭功能以及他们所经历的社会心理负担。

方法

本描述性横断面研究纳入了170名SCD患儿的照料者,通过系统随机抽样选取。使用结构化和半结构化问卷收集数据。家庭功能采用家庭APGAR量表(适应、合作、成长、情感、解决问题)进行评估,而社会心理负担则使用镰状细胞病负担量表(SCDBI)进行评估。使用社会科学统计软件包(SPSS)24版进行统计分析。

结果

参与者的平均年龄为34.7岁,83%为女性。大多数照料者报告家庭功能水平较高。然而,在财务、日常家庭活动中断以及照料者的应对能力等方面观察到了显著的社会心理负担。对家庭互动的影响最小。

结论

本研究中的大多数照料者表现出良好的家庭功能。尽管照料患有镰状细胞病的儿童带来了重大的社会心理负担,但对家庭互动的负面影响最小。

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