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蝴蝶之家儿童舒缓护理中心（简称蝴蝶之家）由来自英国的金林女士及其丈夫古英俊先生，与长沙市第一社会福利院于2010年4月合作创办，是国内首家专门为危重症儿童提供儿童舒缓护理与安宁疗护服务的慈善机构。2011年11月，蝴蝶之家在长沙市民政局正式注册，全面开启为重症儿童及其家庭提供专业支持的历程。
Butterfly Children’s Hospices was co-founded in April 2010 by Lyn Gould from the UK and her husband Alan Gould, in collaboration with Changsha No.1 Social Welfare Institute. It is China’s first charitable organization dedicated to providing palliative and hospice care for children with life-limiting conditions. In November 2011, Butterfly Children’s Hospices was officially registered with the Changsha Civil Affairs Bureau, marking the beginning of its professional services for children and families.
理念 · Philosophy
每个生命都是一份值得珍惜的礼物。
Every life is a gift worth cherishing.
愿景 · Vision
通过引领、合作、倡导和教育，推动中国（及其他类似地区）儿童舒缓护理与安宁疗护的卓越发展。
Our vision is to promote excellence in children’s palliative and hospice care in China (and other similar locations) through leadership, collaboration, advocacy, and education.
我们将通过以下方式实现这一愿景：
We will achieve this vision by:
- 支持患儿及其家庭在身体、情感和社会层面的复杂需求；
- Supporting the complex physical, emotional and social needs of children and their families
- 持续与政府合作，建立可持续、可推广至多个社区的儿童舒缓护理与安宁疗护模式；
- Continuing to work in cooperation with the government to establish models of children’s palliative and hospice care that are sustainable and scalable to multiple communities.
- 致力于推动在国际层面的文化与政策支持。
- Committing to the promotion of cultural and policy changes on an international level.
使命 · Mission
无论孩子是活着还是离世都确保他们会受到关爱和尊重。
All children are afforded dignity and love in life and death.
价值观和信仰 · Values and Beliefs
我们相信
We believe that:
无论生命的长短，每个孩子的生命都弥足珍贵、值得被珍视。
Every child’s life is valuable, and should be valued, no matter how short.
孩子及其家庭的迫切需要，是我们开展每一项工作的原动力
The voice of the child and their family underpins every action we take.
每个弥留之际的孩子都能有尊严的离开人世
Dignity in death should be afforded to every child.
每个孩子都应享有生于世便善存于世的机会
Every child should be given the opportunities to achieve their full potential in life.
争取每一个劝导和支持有需要的家庭的机会，帮助他们做出更好的选择而不是简单的遗弃。
Every opportunity should be taken to educate and support families and assist them to make an alternative choice to abandonment of their child.
服务与成就 · Services & Achievements
蝴蝶之家目前主要与长沙市儿童福利院合作开展服务，机构内设有21张床位，现有约20名儿童长期入住。自成立以来，已为200余名0至17岁的重症孤残儿童提供舒缓护理与康复救治服务。其中，100多名儿童接受了临终关怀；近40名被家庭收养；另有40余名转至其他福利机构继续康复照护。
Currently, Butterfly Children’s Hospices collaborates with Changsha Children’s Welfare Institute, operating 21 beds with around 20 resident children. Since its establishment, it has served more than 200 children aged 0–17 with severe illnesses or disabilities. Over 100 children received hospice care, nearly 40 were adopted into families, and more than 40 were transferred to other welfare facilities for continued rehabilitation.
合作与拓展 · Collaboration & Development
2023年，蝴蝶之家与湖南省儿童医院合作开设湖南省首家儿童安宁疗护病房“福蝶小家”，为患儿及家庭提供个性化的多学科舒缓疗护方案，帮助他们减轻不适、面对心理困扰，以尊严和安心度过生命的重要阶段。
In 2023, Butterfly Children’s Hospices partnered with Hunan Children’s Hospital to establish “Fudie Little Home”, the province’s first pediatric hospice ward. This unit provides individualized, multidisciplinary palliative care to children and families, helping them alleviate suffering, cope with emotional distress, and face life’s most profound moments with dignity and peace.
专业理念 · Professional Approach
儿童舒缓护理是一种积极的全人（身体、心理、精神、社交）、全程（疾病全过程及哀伤辅导）、全家（患儿及家庭成员）、全队（跨学科团队）服务模式，旨在最大限度保障患儿及家庭的生命质量。（世界卫生组织定义）
Pediatric palliative care is a holistic approach addressing the needs of the whole child (physical, emotional, spiritual, social), across the entire course of illness (including bereavement), for the whole family, and through the whole care team. Its focus is to ensure the best possible quality of life (WHO definition).
影响力 · Impact
蝴蝶之家秉持 “Love（关爱）·Hope（希望）·Care（照护）” 的理念，推动国内儿童舒缓护理与安宁疗护的发展。自2014年起，相关服务模式在南京儿童福利院成功复制；2023年又与湖南省儿童医院合作，探索社会组织与医疗机构协作的新模式。同时，机构也在积极研究落地家庭护理中心的可行性，推动标准化、可复制的家庭护理模式。
Butterfly Children’s Hospices upholds the philosophy of “Love · Hope · Care”, setting benchmarks for pediatric palliative care in China. In 2014, its model was successfully replicated at Nanjing Children’s Welfare Institute; in 2023, it pioneered a new collaboration model with Hunan Children’s Hospital. The center also continues to explore scalable, replicable home-care models for wider impact.
公益推广 · Advocacy & Awareness
蝴蝶之家长期致力于推广儿童舒缓护理理念，通过国际帽子日联动、国际论坛、公益短片、专业培训、沉浸式摄影展、演唱会及公益活动等形式提升公众认知；同时引进国外培训资源，筹备专业书籍翻译，推动国内儿童舒缓护理的专业化与社会关注。
Butterfly Children’s Hospices actively advocates for children’s palliative care through initiatives such as International Hats On Day, global forums, short films, professional training, immersive art exhibitions, concerts, and community events. By introducing overseas training resources and translating specialized publications, it fosters professional growth and public empathy for pediatric palliative care in China.
