Awoyale T, Onajole A T, Ogunnowo B E, Adeyemo W L, Wanyonyi K L, Butali A
Lagos University Teaching Hospital, Lagos, Nigeria.
Community Health and Primary Care, University of Lagos, Lagos, Nigeria.
Oral Dis. 2016 Mar;22(2):116-22. doi: 10.1111/odi.12379. Epub 2015 Dec 18.
BACKGROUND: Orofacial clefts (OFCs) are common birth defects that may impose a large burden on the health and psychosocioeconomic well-being of affected individuals and families. This study aims to identify qualitative factors that affect the quality of life (QOL) of family caregivers of children with OFCs. METHODS: A mixed-method study in which family caregivers of OFCs children were consecutively recruited from cleft clinics over a 3-month period. Quantitative data were analyzed using SPSS version 17 and focus group discussion by framework analysis. RESULTS: A total of 107 caregivers participated in the entire study, and 24 caregivers participated in the focus group discussions. About 50% of the children had cleft lip and palate (CLP), 28% with cleft lips only (CL) and 23.4% with cleft palate only (CP). Poor access to specific information and lack of empathy of professionals affected the quality of life and delivery of family-centered care. CONCLUSIONS: To improve the quality of life of family caregivers, individual-focused counseling sessions should be organized for caregivers soon after birth. This will provide an opportunity to discuss the laid out plans for supportive care. It will also be as an avenue to address the arising social issues by health professionals and counselors.
背景:口面部裂隙(OFCs)是常见的出生缺陷,可能给受影响的个体和家庭的健康以及心理社会经济福祉带来沉重负担。本研究旨在确定影响口面部裂隙患儿家庭照顾者生活质量(QOL)的质性因素。 方法:一项混合方法研究,在3个月的时间里从腭裂诊所连续招募口面部裂隙患儿的家庭照顾者。使用SPSS 17版分析定量数据,并通过框架分析进行焦点小组讨论。 结果:共有107名照顾者参与了整个研究,24名照顾者参与了焦点小组讨论。约50%的儿童患有唇腭裂(CLP),28%仅患有唇裂(CL),23.4%仅患有腭裂(CP)。获取特定信息困难以及专业人员缺乏同理心影响了生活质量和以家庭为中心的护理服务提供。 结论:为提高家庭照顾者的生活质量,应在患儿出生后不久为照顾者组织以个体为重点的咨询会议。这将提供一个讨论既定支持性护理计划的机会。它还将成为卫生专业人员和咨询师解决出现的社会问题的途径。
J Craniofac Surg. 2009-11
Int J Pediatr Otorhinolaryngol. 2020-10
Int J Pediatr Otorhinolaryngol. 2019-11
Rev Esc Enferm USP. 2019-4-29
Cleft Palate Craniofac J. 2013-3
J Dent Res. 2017-12
PLOS Glob Public Health. 2023-6-28
Health Qual Life Outcomes. 2012-4-24
Am J Public Health. 2012-3-15
BMC Fam Pract. 2011-4-15
CA Cancer J Clin. 2010-8-13
Neuropsychiatr Dis Treat. 2010-5-25
J Craniofac Surg. 2009-11
Cleft Palate Craniofac J. 2009-7
Int J Oral Maxillofac Surg. 2007-12