特殊需求家庭非障礙手足在不同生命發展階段之需求與服務期待調查研究

Support Needs and Expectations of Siblings of People with Disabilities Across Developmental Stages

本研究旨在探討特殊需求家庭非障礙手足在不同生命發展階段之需求與服務期待、需求與服務期待差異情形，以及不同背景變項之手足在不同階段的需求與服務期待差異情形。研究對象為十三歲以上、具自我表達能力且與特殊手足有血緣關係之非障礙手足，以自編調查問卷為研究工具，透過問卷調查法，採立意取樣之後以滾雪球方式取得有效樣本共445人。經過量化分析得以下結果：一、非障礙手足在幼兒時期、小學時期、青春期，成人期的需求有顯著差異。二、非障礙手足在前述四個階段之服務期待有顯著差異。三、非障礙手足之背景變項（性別、出生序、特殊手足性別、出生序與特殊手足性別交互作用、年齡差距、父母婚姻狀況、主要照顧者）在不同生命發展階段之需求表現有部分顯著差異。四、非障礙手足之背景變項（出生序與特殊手足性別交互作用、年齡差距、特殊手足障礙別、父母婚姻狀況）在不同生命發展階段之服務期待有部分顯著差異。本研究結論為：一、隨著生命發展階段不同，非障礙手足有不同的需求與服務期待。二、男性非障礙手足在「關係」產生需求，女性非障礙手足則在「照顧」。三、具有這些條件的非障礙手足其需求與服務期待更為顯著，值得被關注：非障礙手足出生序為姊姊、處於學齡期、與特殊手足年齡差距小、特殊手足障礙別為多重障礙。

Rationale & Purpose: Although siblings of individuals with disabilities are crucial parts of their family structures, they have historically been overlooked in social welfare systems and research inquiries. The literature on nondisabled siblings of individuals with disabilities, particularly within Chinese-speaking contexts, remains predominantly focused on caregiving dilemmas, limiting our understanding of nondisabled siblings’unique experiences and needs. This narrow focus has failed to provide an adequate foundation for the development of systematic support services addressing the multifaceted challenges siblings face before caregiving discussions can begin. Measures to identify and adequately address the support needs of siblings at each critical stage of development can better equip their families to navigate the complexities they face. In this study, a survey was conducted to explore the lived experiences of nondisabled siblings of individuals with disabilities across their progression through various stages of development. This study focused on the factors influencing these siblings’support needs and expectations. This systematic examination of (a) the current support needs and expectations of nondisabled siblings of individuals with disabilities and (b) the effects of background variables on these needs and expectations can inform both policy and practice. Methods: Purposive and snowball sampling approaches were used. Eligible participants were individuals at least 13 years old with a blood-related sibling with a disability who were capable of completing a survey independently. For participant recruitment, the research team collaborated closely with the Angel Heart Family Social Welfare Foundation, a prominent organization in Taiwan dedicated to supporting families affected by disabilities. Both paper-and-pencil and online surveys were distributed over a 4-month period. A total of 445 valid surveys were collected for analysis. The survey instrument was developed through a comprehensive literature review and a funded qualitative research initiative (project no. MOST 104-2410-H-152-002-). To examine the factor structure of the data, exploratory factor analysis was conducted using a principal component analysis of a sample of 60 participants. A clear factor structure was identified, and the cumulative variance explained ranged from 62.42% to 72.12%. This structure supported the identification of five distinct factors within the support needs subscale (mental stress, family relationships, sibling relationships, parentification, external systems) and four factors within the expectations subscale (family, support services agencies, school/peers, government agencies/society). Reliability tests revealed strong internal consistency for both the support needs and expectations measurement subscales, with Cronbach’s alpha values ranging from .71 to .96. The two-section survey included 42 items within the support needs subscale and 21 items within the expectations subscale across four developmental stages: early childhood, middle childhood, adolescence, and adulthood. Descriptive statistics were calculated, and analysis of variance was employed to delineate patterns and relationships within the dataset. The empirical findings of this study can deepen our understanding of nondisabled siblings’support needs and foster the development of tailored interventions to improve overall familial and individual well-being. Results: The study findings revealed that nondisabled siblings of individuals with disabilities may experience a range of support needs, including those related to mental stress, family relationships, sibling relationships, parentification, and systemic support requirements across all four developmental stages: early childhood, middle childhood, adolescence, and adulthood. These needs demonstrate the complexity of the experience of siblings. Research indicates that nondisabled siblings experienced heightened levels of mental stress during adolescence, which subsequently diminished as they transitioned into adulthood. Furthermore, these siblings express a desire for improved and closer relationships with their siblings with disabilities during early and middle childhood; however, this aspiration tends to decline in later years. The phenomenon of parentification emerged as a significant challenge during middle childhood, adolescence, and adulthood. Overall, nondisabled siblings exhibit markedly increased support needs during middle childhood and adolescence, particularly during the latter stage. Secondly, outcomes significantly differed depending on the gender of the nondisabled sibling, birth order, gender of the sibling with disabilities, interaction between birth order and the gender of the sibling with disabilities, age differences, parental marital status, and the identity of the primary caregiver. Finally, the study also highlighted distinct expectations that nondisabled siblings held regarding their family, service providers, educational institutions, peers, and broader societal structures across all developmental stages. The interplay between numerous factors affected these expectations, including that between birth order and sibling gender, age differences, the disability diagnosis of the sibling, and parental marital status. Conclusions & Implications: The nondisabled siblings of individuals with disabilities have a unique developmental trajectory and set of support needs. Adults should facilitate healthy sibling relationships during early childhood to ensure that nondisabled siblings are comfortable with their siblings with disabilities. During adolescence, the support needs of nondisabled siblings may become more pronounced, particularly regarding mental stress and parentification experiences. Study participants expressed specific expectations for emotional support within a friendly campus environment and sought peer acceptance. As they transitioned into adulthood, these siblings reported making efforts to balance their familial responsibilities with their personal developmental goals. Notably, gender played a major role in shaping the support needs of nondisabled siblings. Male participants tended to prioritize relational dynamics, whereas female participants generally prioritized caregiving responsibilities. These distinctions underscore the necessity of tailored support services that take possible gender differences into account. To sufficiently address the support needs and expectations identified, service providers must develop proactive and age-appropriate support systems, particularly for nondisabled siblings in specific circumstances—namely, older siblings, those navigating middle childhood and adolescence, those close in age to their disabled sibling, and those whose siblings have multiple disabilities. Parents are encouraged to educate their children regarding disabilities to foster a positive and communicative home environment, which can mitigate the risks of parentification. Concurrently, family support service providers should also base the design of their programs on the developmental stages of nondisabled siblings. Educational institutions must promote an inclusive atmosphere that acknowledges the challenges faced by students with disabilities and their siblings. Educational efforts should include ongoing community education on disabilities and the integration of sibling support into professional development for teachers and counselors. Finally, government entities must prioritize societal awareness of disabilities and invest in comprehensive family support services. Such efforts should entail the recognition of nondisabled siblings as integral components of the support network for individuals with disabilities, ensuring equitable access to resources that remain parallel to those available for parents, thereby fostering a holistic approach to family and sibling support within social care frameworks.