[[alternative]]An Investigation on the Developmental Atmosphere for A Child with Wolf-Hirschhorn Syndrome

[[abstract]] 本研究的目的係在探究一個沃夫-賀許洪氏症幼兒的發展氛圍。本研究採用深度訪談法，除以一個沃夫-賀許洪氏症幼兒為主要研究對象外，尚包括幼兒父母及祖父母、學前特殊教育班老師、物理治療師、語言治療師七位研究參與者，以作為本研究三角驗證之用。 本研究係以半結構式的訪談大綱作為訪談的工具。研究者將訪談內容謄寫為逐字稿；接著請受訪者確認繕打資料是否正確，再加以編碼整理分析。資料分析之步驟包含範疇的歸類及形成概念。研究者則根據所形成之主要概念，並輔以所蒐集的相關資料如細胞遺傳學檢驗報告、心理衡鑑轉介及報告單、兒童發展聯合評估綜合報告書、觀察紀錄及母親育兒手札五項資料，以進行整理分析。 從本研究所蒐集的資料，可獲得以下的結論：一、個案的身心發展狀況： (一)個案是第四號染色體部分缺失的孩子，在生理及心理發展狀況都出現嚴重發展遲緩的現象。(二)父母與祖父母知道孩子是沃夫-賀許宏氏症時所出現的五個反應階段：從怎麼會這樣？要怎麼辦？焦慮與面對孩子餵食困難的沮喪、我們認了調適自己、到永不放棄的接納。二、個案父母、祖父母的教養態度及個案對家庭的影響： (一)父母及祖父母對個案的教養方式似顯現出正面積極、民主、包容、保護、耐心、接納、權威及永不放棄的態度。 (二)個案對家庭的影響：大人常手忙腳亂很慌張、驚嚇、無法有完整的睡眠、帶出門很麻煩且不好照顧又須面對懷疑異樣的眼光、生病又更難帶、且在經濟上有不利的影響、大人沒有自己的時間、去做復健到處跑很危險，且對父親工作上有負面的影響等。三、個案父母、祖父母教養態度之背後因素： (一)個案父母、祖父母的教養態度其背後因素，多是因為他們仍對個案還充滿了期待和希望。 (二)家庭中的人文環境及父母身教的氛圍，似對個案的身體動作、認知、語言、生活自理能力、情緒與人格各方面發展皆具有影響。四、個案接受早期介入的狀況： (一)父母親與祖父母為個案所做的努力就是盡量做復健治療、考量孩子的健康狀況及加強生活自理能力的訓練。 (二)個案原本不會走路復健後會走路、原本不會說話復健後也會說話了；有復健是真的有進步，且現在去讀書也變得更加活潑了。五、專業人士對個案發展的看法： (一)個案在各方面的發展得以進步，是因為家長及專業人士對個案都還有期待，大家通力合作一起努力及家長積極的執行與配合的結果，期望她在動作、認知、語言、生活自理各方面的能力可以變得更強、更棒。 (二)個案在療育環境中的發展氛圍對於個案身體動作、認知、語言各方面的發展有顯著的影響。 最後，根據研究結果，本研究對懷孕婦女、家長、專業人士及未來研究者，也提出相關的建議。[[abstract]] The purpose of this study was to explore the developmental atmosphere for a young child with Wolf-Hirschhorn Syndrome. The in-depth interview method was used in the study. In addition to a young child with Wolf-Hirschhorn Syndrome as a major research subject, seven research participants of parents and grandparents of the young child, preschool teacher of special education class, physical therapist, as well as speech therapist were included for the purpose of triangle verification of Research. In this study, a semi-structured interview outline was used as a tool of interview. The researcher transcribed interview contents into verbatim, asked the interviewees to check the accuracy of the verbatim, and then conducted the coding and analysis work. The procedure of analysis included categorization and conceptualization. The researcher based on the formation of the main concepts supplemented by information collected such as cytogenetics inspection reports, the psychological assessment referral and the report card, the comprehensive report of joint assessment for children's development, observation records and mother's parenting records to analyze the data. Based on the data collected from this study, the following conclusions were obtained:1. The physical and mental development of the case : (1) The case is the child with the fourth chromosome partial deletion and has severely developmental delay in both physical and psychological conditions. (2) When the parents and grandparents know that their child born with Wolf-Hirschhorn Syndrome, the following five reaction stages were revealed: From why so? How to do it? Anxiety and frustration for difficulties in feeding the child; We acknowledge it and adjust ourselves;To never give up and accept it. 2. The parenting attitudes of the case’s parents and grandparents, and the impacts from the case on the family: (1) The parents and grandparents' parenting styles on the case seemed to show positive, democratic, inclusive, protective, patient, accepting, authoritative, and never give up attitudes. (2) The impacts from the case on the family: The adults showed a great bustle, frightened, unable to have a full night's sleep, having a lot of trouble to go out and not easy to take care of the case and had to face a strange look; More difficult to take care of the case while sick; Adverse impacts on home finance; the adults did not have their own time; It was dangerous to have the case receive rehabilitation everywhere; There were negative impacts on father's job and so on.3. Factors behind parenting attitudes of the case's parents and grandparents: (1) Factors behind parenting attitudes of the case's parents and grandparents are due to still full of expectation and hope. (2) The humanistic environment in the family and the atmosphere of parents' role model seem to have an impact on the case's development of physical movement, cognition, language, self-help skills, emotion, and personality. 4. The condition of early intervention the case received: (1) The efforts made by the parents and grandparents for the case is to try to do rehabilitation therapy, consider the child's health condition and enhance living skills training. (2) Originally the case could not walk and talk, she now is able to walk and talk after rehabilitation; Rehabilitation is really making progress, and now she becomes more lively while goes to school. 5. The professionals' opinions about the case's development: (1) The reasons for the case's progress are that the parents and professionals have expectations, they work together, the parents positively cooperate with professionals to hope her to become much better in various aspects of motor, cognition, language, self-help skill development. (2) The developmental atmosphere for the case in intervention environment has a significant impact on her development of physical movement, cognition, and language. Finally, according to the research results, some relevant recommendations were also made for pregnant women, parents, professionals and future researchers in the study