障礙者之父母在障礙者不同生命階段所感知到的親職壓力與支持程度──以生態系統的觀點

An Ecological Systems Approach to Understanding Parental Stress and Perceived Support across Lifespan in Special Needs Families

在我國重視家庭的文化下，障礙者的家庭照顧隨著國人平均壽命延長會跨越不同生命階段。本研究在探究父母在障礙者不同生命階段是否會帶出不同程度的壓力與支持需求。本研究對460位父母進行問卷調查，以描述統計、變異數分析等方法分析所得資料。研究結果顯示，第一，障礙者之父母在障礙者不同生命階段有不同的親職壓力和支持需求。父母在孩子剛被診斷時較需要的為資訊性與關係性支持；以早療復健為生活重心的父母開始面臨家庭與工作上的衝突，此時最需要的是來自專業與關係的支持；孩子接受國民義務教育期間，父母渴望社會環境的友善對待；直到孩子成年後，父母將在安置與自己照顧之間掙扎，此時更需要生涯規劃的資訊支持與安置機構的專業支持。整體來說，父母感受到中高程度的親職壓力，需求被支持感受僅有中低程度。第二，父母所感受到的親職壓力和支持與父母性別、照顧時間和家庭經濟狀況有顯著相關。本研究揭示了父母在不同關鍵階段所承受親職壓力與支持需求的複雜與多樣性，也綜合考量相關背景變項對壓力與需求的影響，最後從生態觀點提出建議，為政府、社會組織及專業機構制定更加精準有效的支持政策和服務方案提供了堅實的科學依據。

Rationale & Purpose: Exploring phenomena grounded in sound theoretical frameworks provides valuable insights into the human experience, particularly for families raising children with special needs. Although various support services are available for these families, few studies have focused on their experiences and support requirements across life stages. The dearth of research hinders efforts to make evidence-based policies and enhance support services for families navigating the unique challenges associated with raising children with disabilities. To bridge this gap, the present study was conducted. Using Bronfenbrenner’s ecological systems theory as a comprehensive framework, this study explored the complex interactions between parents and their environment. The present study was conducted in collaboration with a foundation committed to providing family-centered services for families raising children with special needs in Taiwan. Two foundational research questions guided the study. The first aimed to determine the perceived levels of parental stress and support at four key life stages: diagnosis, early intervention, compulsory education, and adulthood. The second examined the correlations between perceived parental stress and support while considering covariates such as parental gender, caregiving duration, and family income. Methods: In this quantitative study, surveys were conducted among 460 parents of children with disabilities (response rate: 98%). Participant recruitment and data collection were facilitated by the partner foundation, which operates five regional offices in northern, central, and southern Taiwan. The surveys were conducted over a period of 4 months. On the basis of a grounded theory research study, survey items were developed for evaluating perceived parental stress and support across life stages. The content validity ratio was found to be greater than .85, while the Cronbach's alpha coefficients for the subscales ranged from .81 to .93, indicating strong reliability. Responses were rated on a 5-point Likert scale, which ensured a structured approach for capturing each participant’s experience. To enhance the relevance of the collected data, the respondents were asked to complete life–stage–related sections on the basis of their personal experiences. Survey data were analyzed using descriptive statistics, t tests, and analysis of variance, comprehensively exploring the correlations between parental stress, perceived support, and demographic characteristics. This methodological approach revealed varying levels of stress and support perceived by parents as they navigated the complex landscape of caring for their children with disabilities. Results: Of the survey respondents, 72% were mothers, and 70% were aged between 36 and 50 years. Approximately 65% of the respondents reported dedicating >8 hours daily to caregiving, and approximately 63% reported raising school-aged children with disabilities. The participants reported moderate to high levels of stress; the average score was 2.17 to 4.16 (on a scale where 5.0 indicates the highest level of parental stress). Out of 43 surveyed items, 37 received an average score of >3.0. The participants also reported low to medium levels of perceived support; the average score ranged from 2.05 to 3.30 (on a scale where 5.0 represents the highest level of support). Among 36 items assessed, 19 received an average score of <3.0, while the highest average of the remaining 17 items was only 3.30. During the diagnosis stage, uncertainty resulted in the highest level of stress (average score: 4.16), followed by the lack of awareness regarding how to respond to the situation (average score: 4.14) and the absence of a centralized source of information (average score: 4.01). During the early intervention stage, the participants found it difficult to balance caregiving-related stress with work and financial pressures. During the compulsory education stage, they experienced high levels of stress related to communication with teachers, specifically in cases involving unresponsive schools and negative interactions with staff (average score: 3.48–4.11). Moreover, the participants reported receiving inadequate support during their children’s transition from structured school schedules to summer or winter vacations (average score: 2.54). During the adulthood stage, the participants had concerns regarding their children’s employment and placement. In addition, they were considerably stressed about in-home caregiving (average score: 3.97) and activities of daily living (average score: 3.84). Significant gender-based differences were observed among participants raising school-aged children with disabilities (n = 283): mothers perceived higher levels of stress than did fathers during the diagnosis, early intervention, and compulsory education stages (p < .05). Notably, the duration of caregiving affected the levels of stress during the diagnosis and early intervention stages: the level of stress significantly increased when the duration of caregiving exceeded 8 hours. Regarding perceived support, mothers felt less supported than did fathers during the early intervention and compulsory education stages. Family income influenced perceived support during these stages, with families earning less than NT$20,000 per month perceiving significantly lower levels of support. Similar trends were observed for the parents of adult children with disabilities (n = 110), with mothers experiencing higher levels of stress than did fathers during the diagnosis stage. Furthermore, the duration of caregiving influenced the level of stress, with a lower level of stress associated with a caregiving duration of less than 8 hours. Caregiving duration also influenced perceived support during the diagnosis stage: parents dedicating 8–16 hours to caregiving experienced lower levels of support than did those dedicating >16 hours. Conclusions and Implications: The levels of stress and support perceived by the parents of children with disabilities vary widely across life stages. Factors such as parental gender, caregiving duration, and family income markedly influence perceived stress and support. Mothers tend to perceive significantly higher levels of stress and lower levels of support than do fathers. The level of stress substantially increases when the daily duration of caregiving exceeds 8 hours. Furthermore, family income influences perceived support, with families earning less than NT$20,000 per month receiving significantly lower levels of support. This study appears to be the first to comprehensively explore the complex correlation between perceived parental stress and perceived support in the Chinese population and factors influencing these parameters. The study illustrates dynamic changes across four key life stages: diagnosis, early intervention, compulsory education, and adulthood. The findings may inform targeted interventions and support services, ultimately contributing to better outcomes for families raising children with disabilities in Taiwan and similar contexts.