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尼日利亚唇腭裂患儿家庭照顾者的生活质量:一项混合方法研究。

Quality of life of family caregivers of children with orofacial clefts in Nigeria: a mixed-method study.

作者信息

Awoyale T, Onajole A T, Ogunnowo B E, Adeyemo W L, Wanyonyi K L, Butali A

机构信息

Lagos University Teaching Hospital, Lagos, Nigeria.

Community Health and Primary Care, University of Lagos, Lagos, Nigeria.

出版信息

Oral Dis. 2016 Mar;22(2):116-22. doi: 10.1111/odi.12379. Epub 2015 Dec 18.


DOI:10.1111/odi.12379
PMID:26456150
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4744119/
Abstract

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.

摘要

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。

相似文献

[1]
Quality of life of family caregivers of children with orofacial clefts in Nigeria: a mixed-method study.

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引用本文的文献

[1]
The role of parenting stress and perceived social support in affecting family function among families of patients with cleft lip and/or palate: a path analysis based on the family adjustment and adaptation response model.

BMC Oral Health. 2025-3-29

[2]
Impact of Multidisciplinary Cleft Team Care on Oral Health Quality of Life in Children With Unilateral Cleft Lip and Palate: A Focus on Early Intervention vs. Sporadic Treatment.

Int J Dent. 2025-3-19

[3]
Quality of Life of the Primary Caregivers of Children with Cleft Lip and Palate in Guanajuato, Mexico: A Cross-Sectional Study.

Healthcare (Basel). 2024-8-20

[4]
What are they considering when they face a fetus with birth defects? A qualitative study on ethical attitudes of health professionals in China.

Glob Health Res Policy. 2024-7-15

[5]
The burden, prevention and care of infants and children with congenital anomalies in sub-Saharan Africa: A scoping review.

PLOS Glob Public Health. 2023-6-28

[6]
Improving the quality of life of parents of patients with congenital abnormalities using psychoeducational interventions: a systematic review.

Qual Life Res. 2023-11

[7]
Early Postnatal Care: Exploring Primary Caregivers' Experiences of Continuity of Care After Discharge at Selected Districts in Limpopo Province South Africa.

Patient Prefer Adherence. 2022-8-8

[8]
Resilience and Related Factors: A Comparison of Fathers and Mothers of Patients With Cleft Lip and/or Palate in China.

Front Psychiatry. 2022-1-13

[9]
Quality of life of parents with children with congenital abnormalities: a systematic review with meta-analysis of assessment methods and levels of quality of life.

Qual Life Res. 2022-4

[10]
A comparative assessment of oral health-related quality of life of children born with orofacial clefts in Sudan and their caregivers'.

BMC Oral Health. 2021-3-23

本文引用的文献

[1]
The PedsQL™ Oral Health Scale: feasibility, reliability and validity of the Brazilian Portuguese version.

Health Qual Life Outcomes. 2012-4-24

[2]
Health disparities among children with cleft.

Am J Public Health. 2012-3-15

[3]
Relationships between quality of life and family function in caregiver.

BMC Fam Pract. 2011-4-15

[4]
Relationship of family caregiver burden with quality of care and psychopathology in a sample of Arab subjects with schizophrenia.

BMC Psychiatry. 2010-9-10

[5]
Interventions with family caregivers of cancer patients: meta-analysis of randomized trials.

CA Cancer J Clin. 2010-8-13

[6]
Optimal management of Alzheimer's disease patients: Clinical guidelines and family advice.

Neuropsychiatr Dis Treat. 2010-5-25

[7]
Quality of life in school-age children with orofacial clefts and their families.

J Craniofac Surg. 2009-11

[8]
The impact of orofacial clefts on quality of life and healthcare use and costs.

Oral Dis. 2009-7-27

[9]
Coping with a cleft: psychosocial adjustment of adolescents with a cleft lip and palate and their parents.

Cleft Palate Craniofac J. 2009-7

[10]
An analysis of quality of life in 130 families having small children with cleft lip/palate using the impact on family scale.

Int J Oral Maxillofac Surg. 2007-12

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