唇顎裂幼童主要照顧者的照顧負荷、正念特質程度，憂鬱和生活品質之相關探討

背景: 唇/顎裂（Cleft Lip and/or Palate）是幼童最常見的先天性顏面缺陷，因唇顎裂治療過程的反覆追蹤需至成年，照顧者承受身心與社會層面的負擔及壓力，然而目前缺乏了解照顧者的生活品質以及影響因素。目的: 探討唇/顎裂幼童主要照顧者生活品質的現況，照顧負荷、正念特質程度、憂鬱和生活品質之相關。方法：本研究採橫斷式、相關性研究設計，以北部某區域醫院顱顏中心門診為收案場所，共收案一百位唇/顎裂幼童主要照顧者，幼童年齡介於三個月至五歲，已完成第一次手術，採立意取樣，使用結構式問卷進行資料收集，包括：「基本資料表」、「家庭衝擊量表」（Impact on Family Scale, IFS）、「病人健康狀況問卷中文版量表（PHQ-9）」、「親職壓力量表簡式版（Parenting Stress Index: Short Form）」、「中文版止觀覺察注意量表（Chinese Mindful Attention Awareness Scale, CMAAS）」。結果：研究發現62%的照顧者家庭整體受到衝擊，且大部分照顧者（88%）出現臨床傾向的憂鬱症狀困擾。相較於台灣，中國大陸照顧者在家庭整體衝擊、財務、社會層面皆出現較差的生活品質。照顧者基本屬性中的人口學變項、唇顎裂幼童基本屬性中的人口學、疾病變項及憂鬱和其生活品質無顯著相關。多元迴歸分析發現親職壓力中越高程度的「親子失功能」、「困難兒童」壓力、初次是從「產前/唇顎裂諮詢門診」獲得資訊來源、越低正念特質程度，與較高的家庭整體衝擊相關; 在財務支持面向，初次是從「產前/唇顎裂諮詢門診」獲得資訊來源、家中罹病幼童有「其他手足」感受到財務負荷較高; 在個人層面衝擊，「正念特質程度」越高的照顧者，對個人層面影響越低; 社會關係層面，照顧者感知親職壓力中「困難兒童」越高，對社會層面衝擊越大;「正念特質程度」越高的照顧者，對社會層面衝擊則越低; 初次從「產前/唇顎裂諮詢門診」獲得資訊來源的照顧者，在應對與因應能力層面衝擊越高。結論：本研究結果發現影響唇顎裂幼童主要照顧者家庭整體生活品質的負面因子包含台灣和中國大陸不同的社會背景和醫療資源、罹病孩童有「其他手足」，與親職壓力之「親子失功能」和「困難兒童」面向，未來針對上述負面因子，了解影響照顧者生活品質的因素，提供長期照護諮詢，同時強化其正念程度（保護因子），以提升照顧者的生活品質。除此之外，還需要提供照顧者預防憂鬱的介入措施。

關鍵字

唇/顎裂幼童；主要照顧者；生活品質；照顧負荷；親職壓力；正念；憂鬱

並列摘要

Background: Cleft lip and/or palate are the most common congenital orofacial defect. Children with CLP need to receive a long-term treatment and follow up till adulthood. Therefore, their primary caregivers undertake the great body-mind-spirit burden and stress. However, there is a lack of study exploring their quality of life and associated factors. Purpose/Objectives: This study aimed to explore the quality of life of caregivers, the correlations of caregiver’s burden, mindfulness trait, depression, with quality of life in the primary caregivers of children with cleft lip and/or palate. Methods: This study adopted the cross-sectional correlational design. Primary caregivers’ (N=100) of children with cleft lip and/or palate were recruited from the outpatient department of cleft lip and palate center at the general hospital in north Taiwan. With purposive sampling method, total 100 primary caregivers of children completing the first surgery on cleft lip and/or palate and aged at 3 months to 5 years old. Data are collected by using the structured questionnaire. Questionnaire scales include: Basic characteristic information, Impact on Family Scale(IFS), Patient Health Questionnaire(PHQ-9), Parenting Stress Index: Short Form, and Chinese Mindful Attention Awareness Scale(CMAAS). Results: The results indicated that 62% of caregiver reported the significant impacts of children’s illness on their family in general. Moreover, most caregivers’ depressive level achieved the clinical depression. Compared with Taiwan, caregivers from China appeared to have a lower quality of life indicating by significant overall total impact in family, financial impact, and disruption of social relations. There were no significant correlations of caregivers’ quality of life with both caregivers’ and children’s demographic data, children’s disease factors, and caregivers’ depression. Multiple regression analysis indicated that the higher overall total impacts in family were associated with higher levels of parenting stress (parent–child dysfunctional interactions and care for difficult child), in the caregivers who obtaining the information from the prenatal/cleft lip and palate clinic for their first time consultation and lower mindfulness trait. From the aspect of financial impact, the greater financial impacts were correlated with those caregivers who obtained the information from the prenatal/cleft lip and palate clinic for the first time consultation and having other siblings in the family. The personal impact was associated with higher mindfulness trait. The greater disruption of social relations was associated with care for difficult child and lower mindfulness trait. The greater impact on caregivers’ coping was found in the caregivers who obtained the information from the prenatal/cleft lip and palate clinic for the first time consultation. Conclusion/Implications for practice: This study concludes that the negative factors of parenting stress associated with caregivers’ quality of life are the different social background and medical resources, children having other siblings, the parent–child dysfunctional interaction and care for difficult child with cleft lip and/or palate. Future interventions aiming to reducing these negative factors, enhancing mindfulness levels (protection factor), and providing the long-term care consultation can be helpful to improve quality of life for caregivers. Moreover, depression prevention program needs to be developed for caregivers.