Department of Communication Sciences and Disorders, University of Utah, Salt Lake City, UT, USA.
Huntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA.
Cleft Palate Craniofac J. 2021 Jun;58(6):746-754. doi: 10.1177/1055665620959995. Epub 2020 Sep 29.
The objective of this study was to examine practices regarding cleft lip and palate (CLP) among medical professionals and caregivers of children with CLP and to identify barriers and facilitators to comprehensive CLP care at a hospital in West Africa.
Qualitative methods used consisted of individual semistructured interviews with caregivers of children with CLP and one focus group with CLP team members.
A majority of the interviews took place in the hospital, with some occurring during home visits. The focus group was conducted in the same hospital.
Forty-five caregivers of children with CLP and 1 adult with CLP completed an interview. Additionally, 2 of the caregivers had CLP and completed an interview from their perspective. The focus group consisted of 13 CLP team members from a comprehensive CLP team in Ghana.
Interviews consisted of semistructured, open-ended questions, and the focus group relied on a discussion guide. Line-by-line coding was used to identify common themes regarding barriers and facilitators to CLP care.
Barriers to CLP care that were consistent across caregiver interviews and the focus group were lack of knowledge regarding CLP, stigma and cultural beliefs surrounding CLP, transportation, financial, and feeding/nutrition issues. Barriers to care identified in the interviews and focus group were similar; however, facilitators to care varied greatly between the 2.
Two different qualitative methods provided unique perspectives on barriers and facilitators to CLP care. However, patients and caregivers continue to face substantial barriers to obtaining care.
本研究旨在调查西非某医院的唇腭裂（CLP）患儿医护人员和照顾者的 CLP 治疗实践情况，并确定全面 CLP 护理的障碍和促进因素。
采用的定性方法包括对 CLP 患儿的照顾者进行个体半结构化访谈和对 CLP 团队成员进行一次焦点小组讨论。
大多数访谈在医院进行，部分访谈在家庭访视中进行。焦点小组在同一家医院进行。
45 名 CLP 患儿的照顾者和 1 名成人 CLP 患者完成了访谈。此外，有 2 名照顾者患有 CLP，并从自己的角度完成了访谈。焦点小组由加纳综合 CLP 团队的 13 名 CLP 团队成员组成。
访谈包括半结构化的开放式问题，焦点小组则依赖讨论指南。采用逐行编码来确定有关 CLP 护理障碍和促进因素的常见主题。
在照顾者访谈和焦点小组中，CLP 护理的障碍包括缺乏 CLP 相关知识、CLP 相关的污名和文化观念、交通、财务以及喂养/营养问题。访谈和焦点小组中确定的障碍是相似的；然而，促进因素在两者之间存在很大差异。
两种不同的定性方法提供了对 CLP 护理障碍和促进因素的独特视角。然而，患者和照顾者仍然面临着获得护理的巨大障碍。
