PDF(Pubmed)
Abstract：
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
摘要：
■肛门直肠畸形（ARM）的治疗和临床结果的管理对家庭来说是具有挑战性的。虽然大多数研究都集中在患有护理负担的母亲身上，高应力,生活质量低，对有ARM经历的孩子的父亲的知识有限；因此，这项研究旨在研究父母如何照顾ARM患儿的经验，以及信仰和文化问题如何影响对先天性异常的感知。
■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。
■采访了10位母亲和6位父亲，他们的平均年龄为32.5±4.2岁。在75％（n=12）的文盲和93.7％（n=15）的家庭类型扩大中，他们所有的宗教信仰都是穆斯林。四个主要主题是(1)模糊，（2）挑战，（3）污名，(4)应对，这与父母对拥有和照顾ARM儿童的看法的数据分析结果一致。
■在这项研究中，许多索马里父母报告说他们缺乏疾病和治疗知识，身体疲惫,以及由于生活在农村地区而无法进入医院的一些困难，照顾孩子,处理长期并发症，结肠造口术,肛门扩张,在肛门成形术之前或之后灌肠。虽然所有的父母都提到有一个ARM的孩子是一种命运，这被他们密切的社会环境视为惩罚。因此,这项研究可以为多学科卫生专业人员规划全面的医疗保健以及身体和心理社会支持奠定基础.
■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。
■采访了10位母亲和6位父亲，他们的平均年龄为32.5±4.2岁。在75％（n=12）的文盲和93.7％（n=15）的家庭类型扩大中，他们所有的宗教信仰都是穆斯林。四个主要主题是(1)模糊，（2）挑战，（3）污名，(4)应对，这与父母对拥有和照顾ARM儿童的看法的数据分析结果一致。
■在这项研究中，许多索马里父母报告说他们缺乏疾病和治疗知识，身体疲惫,以及由于生活在农村地区而无法进入医院的一些困难，照顾孩子,处理长期并发症，结肠造口术,肛门扩张,在肛门成形术之前或之后灌肠。虽然所有的父母都提到有一个ARM的孩子是一种命运，这被他们密切的社会环境视为惩罚。因此,这项研究可以为多学科卫生专业人员规划全面的医疗保健以及身体和心理社会支持奠定基础.
