Suluhan Derya, Haji Mohamud Rahma Yusuf
Department of Pediatric Nursing, Gulhane Faculty of Nursing,University of Health Sciences Türkiye, Ankara, Türkiye.
Department of Education, Mogadishu Somalia-Turkey Recep Tayyip Erdoğan Training and Research Hospital, Mogadishu, Somalia.
J Multidiscip Healthc. 2024 Jun 7;17:2789-2798. doi: 10.2147/JMDH.S462391. eCollection 2024.
Treatment of anorectal malformations (ARM) and the management of clinical outcomes are challenging for families. While most studies focus on mothers suffering from care burden, high stress, and low quality of life, there is limited knowledge of what fathers of children with ARM experience; therefore, this study aimed to examine how both mothers and fathers have experience caring for children with ARM and how beliefs and cultural issues affect the perception of congenital anomalies.
A qualitative design. Consolidated criteria for reporting the qualitative research guidelines were used in this study. The guidelines for thematic analysis were followed for data analysis.
Ten mothers and six fathers were interviewed, and their mean age was 32.5 ± 4.2 years. Of the 75% (n = 12) illiterate and 93.7% (n = 15) had an expanded family type, all their religious affiliations were Muslim. The four main themes were (1) ambiguity, (2) challenges, (3) stigma, and (4) coping, which were determined in line with the results of the data analysis of parents' views on having and caring for children with ARM.
In this study, many Somali parents reported that they lacked disease and treatment knowledge, physical exhaustion, and some difficulties related to a lack of access to the hospital because of living in rural areas, caring for the child, and dealing with long-term complications, colostomy, anal dilatation, and enema before or after anoplasty. While all parents mentioned that having a child with ARM was a fate, it was seen as punishment by their close social environment. Consequently, this study could serve as a foundation for planning comprehensive healthcare and physical and psychosocial support for multidisciplinary health professionals.
对于家庭而言，肛门直肠畸形（ARM）的治疗及临床结果的管理颇具挑战。虽然大多数研究聚焦于承受护理负担、高压力及低生活质量的母亲，但对于患有ARM的儿童的父亲的经历了解有限；因此，本研究旨在探讨父母双方在照顾患有ARM的儿童方面的经历，以及信念和文化问题如何影响对先天性异常的认知。
采用定性设计。本研究使用了报告定性研究指南的综合标准。数据分析遵循主题分析指南。
对10位母亲和6位父亲进行了访谈，他们的平均年龄为32.5±4.2岁。75%（n = 12）为文盲，93.7%（n = 15）为大家庭类型，他们均为穆斯林宗教信仰。根据对父母关于生育和照顾患有ARM的儿童的观点的数据分析结果，确定了四个主要主题：（1）模糊性，（2）挑战，（3）污名，（4）应对。
在本研究中，许多索马里父母报告称，他们缺乏疾病和治疗知识，身体疲惫，并且由于生活在农村地区、照顾孩子以及处理长期并发症、结肠造口术、肛门扩张和肛门成形术前后的灌肠等问题，在就医方面存在一些困难。虽然所有父母都提到生育患有ARM的孩子是一种命运，但他们亲密的社会环境却将其视为一种惩罚。因此，本研究可为多学科健康专业人员规划全面的医疗保健以及身体和心理社会支持提供基础。
