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Applying a Trauma-Informed Perspective to Explore the Traumatic Experience of Parents whose Children with Rare Diseases - An Example from a Medical Center in Northern Taiwan

Advisor : 劉淑瓊


美國國家兒童創傷壓力網絡(National Child Traumatic Stress Network[NCTSN], 2021)指出歷經兒科醫療處置的病童及其家庭可能產生創傷性壓力反應,進而影響其日常生活功能及醫囑遵從情形。NCTSN(2021)認為醫事人員在協助有兒科醫療創傷壓力(Pediatric Medical Traumatic Stress, PMTS)經驗的病童及家庭,可以運用創傷知情照護(Trauma-informed Care, TIC)辨識正在經歷創傷的病童及家庭,理解病童及家庭正在經歷的創傷,盡可能減少醫療過程造成其再度創傷的風險,並且提供創傷預防措施。 基於醫療場域中創傷經驗對罕見疾病病童父母的重要性,本研究從創傷知情視角出發,透過與五位罕病家庭父母與兩位醫務社工師進行半結構式訪談,探索與描繪罕見疾病病童父母之創傷與再度創傷經驗,以及其因應創傷經驗,提供深陷創傷情境中的罕病家庭與醫療團隊成員,運用創傷知情一些具體參考。 本研究發現呈現如下: 一、罕病病童父母在歷經診斷期對於未來的不確定感,並目睹罕見疾病對子女生命及健康的威脅,因而埋下了潛在性創傷與影響。進入治療期,父母會擔心侵入性醫療處置,對於孩子產生生命威脅與後遺症,出現沮喪、悲傷、擔心、無助、自責的急性創傷經驗。治療結束後,父母因為看不到長期照顧的盡頭,而產生失眠、情緒崩潰、看不到未來的恐懼、害怕子女死亡的慢性創傷經驗。 二、罕病病童父母因應創傷的方式包括:親情的力量與責任、面對問題、病況改善、親友支持、宗教與社會支持。讓他們得以調適壓力的負面影響,並重新投入新生活的正向轉變,促使創傷後成長。 三、罕病病童父母面對子女的醫療決定時,往往會感到惶恐與不安。父母的再度創傷源自於醫療權威、醫師不友善的問診方式與態度、醫病溝通衝突、旁人缺乏敏感度的話語。罕病病童父母的共同心聲,就是期待醫師多站在父母角度思考,開放的接納父母照顧經驗下的建議,並將父母視為與醫師平等的友伴關係。

Parallel abstracts

The National Child Traumatic Stress Network (NCTSN, 2021) noted that children and their families who undergo pediatric medical treatment might experience traumatic stress reactions that can affect their daily functioning and medical compliance. NCTSN (2021) recognized that medical staff could use Trauma-informed Care (TIC) to identify children and families who are suffering from trauma and understand the trauma they are facing when assisting children and families with experience of Pediatric Medical Traumatic Stress (PMTS). They also try to minimize the risk of re-traumatization from medical procedures and provide trauma prevention measures. Trauma experience in medical practice is significantly essential for parents of children with rare diseases. Therefore, this study explored the trauma and re-trauma experiences of parents of children with rare diseases through semi-structured interviews with five parents of rare disease families and two medical social workers from a trauma-informed perspective. The researcher hopes to provide a specific reference for trauma-informed use to families and medical team members in trauma-informed situations. The results show: 1.Parents of children with rare diseases experience a sense of uncertainty about their children’s future during the diagnostic period. They also witness the threat that rare diseases pose to the lives and health of their children, thus having potential trauma and impact. As children enter the treatment period, parents are concerned about life-threatening effects and sequelae of invasive procedures on their children. They might experience acute trauma, such as depression, sadness, worry, helplessness, and self-recrimination. After the treatment ends, parents have chronic traumatic experiences of insomnia, emotional breakdowns, the terror of not seeing the future, and fear of their kids' death because they cannot see the end of long-term care. 2.Parents of children with rare diseases deal with trauma in many ways: the power and responsibility of their family, confronting the problem, getting better from illness, as well as support from family, friends, religion, and society. It helps them adjust to the harmful effects of stress and serves as a positive change for them to re-engage in a new life, leading to post-traumatic growth. 3.Parents of children with rare diseases are often frightened and anxious to make medical decisions related to their children. Parents' re-trauma arises from a medical authority, unfriendly consultation and attitude of doctors, conflicts in doctor-patient communication, and insensitive words of outsiders. Parents of children with rare diseases expect doctors to be empathetic, to be open to suggestions from parents' care experience, and to treat parents as partners on an equal basis.