以家庭情境詮釋腦性麻痺兒童父母親之育兒經驗

Child-rearing Experiences of Parents in the Family Context of Children with Cerebral Palsy

羅安慈(Am-Tzu Lo)

指導教授 ： 高碧霞

國立臺灣大學/醫學院/護理學研究所/碩士(2011年)

https://doi.org/10.6342/NTU.2011.02377

摘要

背景：醫療品質的提升，卻無法降低新生兒或兒童腦性麻痺的發生率，因腦部損傷的主因，腦性麻痺兒童終其一生的殘疾，對整個家庭而言無疑是一沉重的負擔與壓力，不僅造成家庭的功能改變，對於父母、手足、醫療政策、社會成本，都造成嚴重的影響，近年來國內針對腦性麻痺兒童家庭的研究已逐漸增加，但大多為教育、復健、心理等相關領域的研究，從護理的觀點探討腦性麻痺兒童父母親育兒經驗的研究較缺乏。
目的：本研究從護理的角度切入，藉由腦性麻痺兒童父母親的育兒經驗，了解父母親在照顧腦性麻痺兒童的心路歷程、父母親的親職壓力以及面對問題時的調適與決策過程，以提升腦性麻痺兒童的家庭功能以及照護品質。
方法：本研究採量性與質性研究方法進行兩個層級研究，第一部分為問卷調查法，邀請腦性麻痺兒童的父母親填寫臺灣版親職壓力量表，了解父母親在親職壓力上所遭遇到的實際發生或潛藏的問題。第二部分以詮釋學的方法，運用具半結構式的訪談指引，深入訪談並引導父母親們表達內心的真實感受，經由編輯分析型式歸納出父母親遇到問題的主因及因應方式。
結果：納入10組擁有腦性麻痺兒童的家庭，父親10位、母親10位，共20位訪談對象，計20份有效問卷。量性研究結果：藉由無母數統計分析方法分析親職壓力得分，包含兒童因素分量表、父母因素分量表、總分以及生活壓力四組分數，分兩主題呈現（一）父親與母親的親職壓力與生活壓力：（1）兒童因素分量表-父親比母親有較高的兒童因素壓力，以接納性壓力最高，其次為子女增強父母與情緒心情，母親則是在強求性部分感受到較多的壓力；（2）父母因素分量表-父親在親職角色投入、親職能力、社會孤立上感受壓力高於母親，母親則是以父母健康狀況、夫妻關係壓力大，其次為親職角色限制與憂鬱；（3）親職壓力總分：整體性親職壓力總分在腦性麻痺父母親身上無顯著的差異；（4）生活壓力：生活壓力得分父親低於母親。（二）家庭整體社經地位的高低對親職壓力與生活壓力的影響：（1）兒童因素分量表-社經地位中高的家庭在子女增強父母與適應性所感受的壓力高於高社經地位的家庭，高社經地位的家庭在過動無法專注與接納性較中高社經地位家庭感受到壓力為高；（2）父母因素分量表-中高社經地位的家庭在親職角色限制與夫妻關係所感受到的壓力高於高社經地位的家庭，高社經地位的家庭以親職角色投入、憂鬱、社會孤立以及父母健康狀況感受到較高的壓力；（3）親職壓力總分：整體性親職壓力總分與社經地位的高低無顯著的差異；（4）生活壓力：生活壓力得分與家庭社經地位的高低無顯著差異。
質性訪談結果根據育兒經驗現象，歸納出三個主題：折翼天使的降臨、困境中的學習與成長、大雞晚啼的未來。「折翼天使的降臨」包含六個次主題：（1）父母難以面對的真象（2）自責、難過、無法達成母性功能（3）期待與現實之間的拉距（4）哀傷情緒，封閉自我（5）家人與親友關心的迴避（6）調適自我，重新面對；「困境中的學習與成長」包含四個次主題：（1）徬徨無助的新生活（2）為母則強的韌性（3）醫療資源的獲得與協助（4）夫妻關係衝突與重建；「大雞晚啼的未來」包含七個次主題：（1）家庭支持系統的重建（2）按部就班的復健之路（3）人云亦云的民俗療法（4）不如預期的早療效果（5）國民義務教育體制的失望（6）對孩子未來人生的期望（7）手足的心理影響與責任。
結論：綜合量性分析與質性訪談的研究結果發現，父母親在照顧腦性麻痺兒童的過程中會面臨到四種潛在的議題：（一）腦性麻痺兒童父母心境上的轉換（二）腦性麻痺兒童父母親職壓力與支持系統的建立（三）腦性麻痺兒童父母對早期療育成效的失望（四）腦性麻痺兒童父母面對轉銜教育的擔憂；根據父母親的育兒經驗，醫療從業人員與政府機關若能在早期就將父母們會面對到的現況，針對兒童疾病特性做個別分析與政策擬定，積極教育父母親，相信可以降低整體的家庭壓力與潛在問題的發生，並提升家庭功能。

關鍵字

:腦性麻痺兒童 ； 育兒經驗 ； 親職壓力 ； 家庭功能 ； 早期療育 ； 轉銜教育

並列摘要

Background: The incidence of cerebral palsy in newborns or young children has been not reduced in spite of the substantial improvement in the quality of medical care. Children with cerebral palsy develop brain damage and result in lifelong disability, which is undoubtedly a heavy burden and pressure for the entire family. The devastating conditions not only change the functions of a family, but also have serious impact on parents, siblings, health policy and social costs. There have been increased studies focusing on the families whose children with cerebral palsy, however, most are restricted to education, rehabilitation and psychological problems. Empirical research untaken from the point of view of nursing care to investigate how parents parenting the children with cerebral palsy still remain in lack.
Objective: This study was undertaken from the point of view of nursing care to obtain an insightful understanding of spiritual experiences, parental stress, as well as decision-making and adjustment processes while those parents facing difficulties in parenting the children with cerebral palsy, which ultimately aimed to improve family functioning and quality of care.
Methods: The study consisted of two parts and employed quantitative and qualitative methods. The goal of part 1 was to identify the parenting experiences under pressure for the actual or potential problems by applying a Parental Stress Index (PSI) questionnaire (Chinese version) to the parents of children with cerebral palsy. The second part was a hermeneutic approach using semi-structured interview guidelines. In-depth interviews were provided to guide the parents to express their true feelings. The main causes of problems and coping strategies of parents facing problems were then summarized by editing analysis.
Results: Twenty interviewees including 10 fathers and 10 mothers from 10 families of children with cerebral palsy were enrolled in this study. Quantitative evaluation using a nonparametric statistical method was applied for scaling parenting stress, which consisted of child and parent subscales, as well as life stress and total stress scores. The results were presented in two divided topics as the follows: (A) Parenting stress and life stress of fathers and mothers. (1) Subscale of children. Fathers had higher stress scores in accepting stress, followed by promoting emotional stability and balanced mood for children as compared with the mothers. Mothers suffered more assertive pressure than fathers. (2) Subscale of parents. Fathers had higher stress scores in parenting role, parenting capability and social isolation than mothers. Mothers had stress scores in the following orders: health status of parents, marital relationships, limitations of parenting role and depression. (3) Total scores of parenting stress. There was no significant difference in overall parenting stress between fathers and mothers. (4) Life stress. The life stress was lower for fathers in comparison to mothers. (B) The impact of family’s socio-economic status on parenting stress and life stress. (1) Subscale of children. High socio-economic families showed higher stress scores of promoting emotional stability and balanced mood for children than low socio-economic families. High socio-economic families also had higher pressure in admissibility and facing children with poor concentration and hyperactivity than moderate-to-low socio-economic families. (2) Subscale of parents. The scores of limitations of parenting role and marital relationships were higher in moderate-to-low socio-economic families in comparison to high socio-economic families. In contrast, higher scores of parenting role, depression, social isolation and health status of parents indicated higher stress in high socio-economic families. (3) Total score of parenting stress. No significant difference in the association of overall parenting stress with socio-economic status was observed.
(4) Life stress. No significant difference in the association of life stress score with socio-economic status was found. The results of hermeneutic approach based on child-rearing experiences were summarized to three themes: “the coming of children born with illness”, “learning and growing in difficulties” and “ the late bloomer ”. There were 6 sub-themes included in “the coming of children born with illness”: (1) a difficult truth to face for parents, (2) self-blame, sadness and unable to implement the functions of a mother, (3) a gap between expectations and reality, (4) conflict resolution and reconstruction of martial relationships, (5) avoidance of concerns from family members and friends, and (6) self-adaptation and facing challenge. The 4 sub-themes of “learning and growing in difficulties” consisted of (1) starting a new life without help, (2) mental toughness of mothers, (3) access to medical resources and assistance, and (4) conflict resolution and reconstruction of martial relationships. Seven sub-themes were included in “the good time in the future”, including (1) reconstruction of family supporting system, (2) step-by-step rehabilitation, (3) complementary alternative therapy, (4) unexpected efficacy of early treatment, (5) disappointment over compulsory education, (6) expectations of the future life for individuals, and (7) the psychological impact and responsibilities of siblings.
Conclusions: According to the summarized results of quantitative analysis and hermeneutic approach, there were four potential problems needed to be coped during parenting the children with cerebral palsy. Those problems were (1) mood conversion, (2) parenting stress and establishment of supporting systems, (3) disappointment over the fact of unexpected efficacy of early intervention, and (4) worries about transition education for the parents of children with cerebral palsy. Based on the parental child-rearing experiences, strategies can be made by medical practitioners and government authorities according to the analysis of illness characteristics in children. The functions of families can also be promoted by active education for parents in order to reduce the overall family stress and to lower the risk of potential problems.

並列關鍵字

Children with Cerebral Palsy ； Parenting/Child-Rearing Experience ； Parenting Stress ； Family Function ； Early Intervention Program ； Transitional Education

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