Malaysian Association of Paediatric Palliative Care

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Malaysian Association of Paediatric Palliative Care DONATE TODAY!

Persatuan Paliatif Pediatrik Malaysia
Hong Leong Bank A/C: 22500031209
Send transfer slip to: [email protected]

Kindly refer to our objective at https://mappac.org/about/objective

📢 𝗪𝗘 𝗔𝗥𝗘 𝗛𝗜𝗥𝗜𝗡𝗚! 𝗝𝗢𝗜𝗡 𝗧𝗛𝗘 𝗠𝗔𝗣𝗣𝗔𝗖 𝗧𝗘𝗔𝗠! 💙Are you passionate about marketing, creativity, and making a meaningful differen...
14/10/2026

📢 𝗪𝗘 𝗔𝗥𝗘 𝗛𝗜𝗥𝗜𝗡𝗚! 𝗝𝗢𝗜𝗡 𝗧𝗛𝗘 𝗠𝗔𝗣𝗣𝗔𝗖 𝗧𝗘𝗔𝗠! 💙

Are you passionate about marketing, creativity, and making a meaningful difference in the community? We’re looking for a Marketing Officer to join the Malaysian Association of Paediatric Palliative Care (MAPPAC)!

✨ 𝗪𝗵𝗮𝘁 𝘆𝗼𝘂’𝗹𝗹 𝗱𝗼:
📱 Create engaging social media content and marketing materials🎨 Strengthen MAPPAC’s branding and public awareness
🤝 Support fundraising, CSR initiatives, and community engagement
💙 Help raise awareness of paediatric palliative care and make a difference in the lives of children and their families.

🔎 𝗪𝗵𝗼 𝘄𝗲’𝗿𝗲 𝗹𝗼𝗼𝗸𝗶𝗻𝗴 𝗳𝗼𝗿:
✔️ At least 3 years of relevant experience
✔️ A Diploma/Degree in Marketing, Communications, Business, or a related field
✔️ Good writing, communication, and creative skills
✔️ Proficiency in social media management and basic design tools
✔️ Someone who is independent, proactive, and passionate about our cause.

📅 Application Deadline: 𝟯𝟬 𝗡𝗼𝘃𝗲𝗺𝗯𝗲𝗿 𝟮𝟬𝟮𝟲

📩 Interested? Send your resume and application to:
𝗺𝗮𝗽𝗽𝗮𝗰𝗺𝗮𝗹𝗮𝘆𝘀𝗶𝗮@𝗺𝗮𝗽𝗽𝗮𝗰.𝗼𝗿𝗴

Be part of a team that turns communication into compassion and awareness into action. 💙

💙 World Palliative Care Day 2026 | Together for More Moments ❤️Every child deserves comfort, every family deserves suppo...
12/10/2026

💙 World Palliative Care Day 2026 | Together for More Moments ❤️

Every child deserves comfort, every family deserves support, and every moment deserves to be cherished. 🌈

On 10 October 2026, MAPPAC, in collaboration with Sunway Medical Centre, came together to celebrate World Palliative Care Day under the theme “Connect • Learn • Support.”

It was a meaningful day filled with heartfelt stories, inspiring sharing sessions, engaging discussions, and practical workshops — bringing together healthcare professionals, caregivers, families, and the community to learn more about paediatric palliative care.

From the touching Kim Boon Kim Boon Portraits video montage to personal sharing sessions and caregiver empowerment workshops, each moment reminded us that palliative care is about more than medical support. It is about improving quality of life, offering comfort, empowering families, and making every moment count. 🤍

A heartfelt thank you to Sunway Medical Centre, our speakers, workshop facilitators, partners, participants, and everyone who contributed to making this event possible. Your support helps us continue raising awareness and building a more compassionate community for children with life-limiting conditions and their families.

Together, let us create a world where every child and family receives the care, dignity, and support they deserve.

Because every child, every family, every moment matters. 💙

📢 𝗪𝗼𝗿𝗸𝘀𝗵𝗼𝗽 𝗥𝗲𝗴𝗶𝘀𝘁𝗿𝗮𝘁𝗶𝗼𝗻 𝗖𝗹𝗼𝘀𝗶𝗻𝗴 𝗧𝗼𝗱𝗮𝘆 𝗮𝘁 𝟮.𝟬𝟬 𝗣𝗠!A heartfelt thank you to everyone who has registered for our workshops ...
09/10/2026

📢 𝗪𝗼𝗿𝗸𝘀𝗵𝗼𝗽 𝗥𝗲𝗴𝗶𝘀𝘁𝗿𝗮𝘁𝗶𝗼𝗻 𝗖𝗹𝗼𝘀𝗶𝗻𝗴 𝗧𝗼𝗱𝗮𝘆 𝗮𝘁 𝟮.𝟬𝟬 𝗣𝗠!

A heartfelt thank you to everyone who has registered for our workshops at World Palliative Care Day 2026! 💙

Registration will 𝗼𝗳𝗳𝗶𝗰𝗶𝗮𝗹𝗹𝘆 𝗰𝗹𝗼𝘀𝗲 𝘁𝗼𝗱𝗮𝘆 𝗮𝘁 𝟮.𝟬𝟬 𝗣𝗠. We look forward to welcoming all of you tomorrow for a meaningful day of learning, connection, and raising awareness about paediatric palliative care.

See you tomorrow! 💙✨

06/10/2026

振业、晓韩访谈儿童安宁疗护专科顾问医生李颉,围绕世界安宁疗护日说明安宁疗护的定义、儿童服务缺口、疼痛管理与居家照护。李颉强调,安宁疗护不是放弃治疗,而是在疾病难以根治时继续照顾病人及其家庭。

安宁疗护以人为中心,不等于放弃治疗
安宁疗护面对严重疾病患者。无论疾病是否仍有根治方式,照护都不应只围绕疾病本身,也要顾及病人的身体、心灵、家庭和日常生活。李颉说,安宁疗护的核心是“医治的是人,而不只是病”。

他认为,把安宁疗护理解为放弃治疗,是社会上常见的误解。当肿瘤等疾病经过多种治疗仍无法控制,医疗团队会放下没有帮助的治疗方式。被放下的是无效治疗,不是对病人和家属的照顾。

安宁疗护也包括放下不合适的想法和态度,帮助病人及家属面对往后的日子。重点不是预设生命终点,而是在病人最脆弱的阶段提供配合与支持。

儿童安宁疗护面对多类非肿瘤疾病
李颉说,儿童安宁疗护中约28%与肿瘤有关。儿童肿瘤以血癌为主,治疗往往有较高成功率。安宁疗护团队仍会与肿瘤专科共同照护,包括止痛和协助孩子面对疾病。
他又称,儿童安宁疗护中80%来自非肿瘤疾病。这类情况包括先天基因问题导致肺部、脑部或肾功能不健全。主要器官的问题难以改变,照护重点是让孩子获得较好的生活。需要洗肾的孩子即使接受洗肾,也可能只能延长十年生命,除非能够换肾。
- 罕见基因疾病:有些疾病可能一百万人中只有一名孩子患病。它们可造成发育迟缓、长期卧床,或让原本健康的孩子在四五岁后出现能力退化。
- 功能退化:孩子原本会说话或进食,后来可能失去这些能力。
- 其他病况:肌肉萎缩的孩子也属于儿童安宁疗护服务对象。

马来西亚服务基础已具备,但覆盖不足
李颉以盖房子比喻马来西亚的发展:地基、四面墙和屋顶都有了,但能“住进来”的儿童仍少。马来西亚每年约有8万名儿童需要安宁疗护,目前只能照顾少于1,800名。

他指出,扩大服务需要不同方面配合,也仍缺少相关专科。作为比较,他说全世界每年约有2,000万名儿童需要儿童安宁疗护。英国一名安宁疗护医生可能照顾100到10万名孩子,马来西亚一名医生则要照顾150万名孩子,差了一个零。

儿童安宁疗护与成人服务的常见印象不同。进入服务并不表示孩子必然不能回到原有生活。一些严重脑损伤、因缺氧等原因长期卧床的孩子,在避免感染、减少反复入院,并配合复健训练后,几年后可能重新坐起、进食,因而不再属于安宁疗护对象。

李颉说,儿童的大脑在五岁前仍会发展。一些基因问题在两岁前最严重,过了两岁后问题可能减少,孩子可以继续成长。安宁疗护不是一个固定地点,而是生命某个阶段所需的支持。
疼痛管理须处理身体、心理与生活问题。

2026年10月10日世界安宁疗护日的主题是“疼痛管理是安宁疗护不可或缺的一部分”。李颉认为主题贴切,因为疼痛在严重疾病中常被掩盖,尤其儿童可能不愿告诉父母。他们担心父母忧虑,也可能害怕说痛后要接受更多打针。

孩子是否疼痛,不能只看零到十的疼痛分数。李颉说,孩子不痛时会玩、睡和吃。如果其中一项做不到,可能有无法说出的疼痛。即使孩子报八分痛,也可能仍在玩手机或游戏,因为每个人的忍受程度不同。

疼痛不是单纯的数字,也不只是身体症状。 它还可能牵涉心理、过去经历、对疾病的理解、恐惧、害怕和家庭处境。吗啡剂量很高的孩子仍可能在夜里哭喊,原因可能是害怕疾病或死亡。夜晚不敢睡觉,也会让疼痛显得更严重。

李颉说,处理这类疼痛时,团队除了用药,也会教呼吸方法。焦虑较严重时,可能给予药物对抗忧虑。曾有一名约十岁的癌症孩子,腹部肿瘤手术后仍然疼痛,吗啡无法减少。李杰颉发现孩子有许多恐惧后,教他处理恐惧的方法。第二天,孩子不再需要吗啡。

他还举例说明冥想方法:让孩子闭眼寻找疼痛所在,观察疼痛的大小或控制方式,再想象把它调小。孩子每天练习三次。小韩认为,这让孩子重新获得掌控感。李颉认同,并说孩子喜欢觉得自己能够做到、能够控制一部分生活。

疼痛管理的目标不只是减少痛感,而是让孩子回到原本生活。孩子能上学、吃饭、睡觉、和家人玩,也能继续承担自己在家中的角色。 寂寞地坐着无事可做也会加重痛感。若能回到学校,孩子可能会暂时忘记疼痛。

回家照护可让家庭重回生活
李颉说,安宁疗护常被看作通往死亡的过程,但也有积极故事。许多病童不能回家,是因为需要多种机器。父母还要工作和照顾家庭,难以成为全职照顾者。病童可能在ICU或HCU住上一年、两年、三年,曾有孩子在病房住了七年仍无法回家。

他去年协助一名已住院三年的孩子回家。孩子因脑部状况会忘记停止呼吸,家庭又面对单亲等困难。团队与母亲讨论并做了许多准备。回家当天,护士既高兴又不舍。李颉到孩子家中后,看见公寓旁有泳池,兄弟姐妹与祖父母都在身边,感到自己让整个家庭重新回到生活。孩子回家后只活了约六个月,但他认为这段回归很重要。

家属在回家前需要掌握紧急抽筋、呕吐等情况的处理方法,知道该联络谁、何时回医院,以及何时请安宁疗护家访团队到场。家中也可能需要喂奶机、氧气机等器材,并面对失去工作后的财务压力。
- 器材申请:可向政府医院申请,但可能需等六个月到一年。
- 过渡支援:等待期间可向社会团体求助,借用或租用器材。
- 企业协助:部分器材公司愿意提供较低价格,让家庭能把设备带回家。
- 财务援助:团队也会协助家庭争取财务帮助。

社区、义工与专业训练
李颉认为,生死议题人人都会面对,可能发生在自己、家人或朋友身上。公众可以学习安宁疗护知识,在疾病发生时帮助自己和身边人。这是他所说的“全社区医疗”。

训练内容包括理解安宁疗护概念,以及学习如何用药、聆听、陪伴和陪病人走过困难。李颉承认,现代人忙碌,未必有时间学习。但他认为放慢生活脚步,对自己和身边人都有帮助。

马来西亚目前有五间儿童安宁疗护中心。受训者可回到社区提供服务。义工可陪伴孩子、陪他们玩和吃饭,也可协助筹款及组织活动。李颉说,社区中的这些服务都是免费的。
义工分为三类:
- 一次性义工:大型活动时参与,先听一小时课程。
- 兼职义工:接受四小时培训,再协助举办各类活动。
- 家访义工:接受两天训练,随后跟随护士家访,直到有信心参与照护。
家访义工不会单独照顾病人。两名义工会一起服务一个家庭,并让长期照顾者获得四小时个人时间,可以休息、喝咖啡或做自己想做的事。十八岁以上即可参与。李颉说,没有特别条件,只要能走能动并且愿意付出即可。

世界安宁疗护日庆典与参与渠道
马来西亚将首次举行安宁疗护庆典。李颉说,安宁疗护能让受苦的病人活得更好,因此值得庆祝。活动将在2026年10月10日星期六举行,为全天活动;摄影展已在双威医疗中心D座一楼举行。

当天安排包括父母分享、摄影活动故事分享、照顾孩子与家人的工作坊,以及通过游戏沟通的工作坊。现场也有展览,让公众认识不同单位和团体。想当义工的人可到各单位摊位了解,马来西亚医疗护协会也会设摊。

李颉把活动形容为嘉年华,希望公众带更多人前来认识安宁疗护,也可现场报名成为义工。更多详情可通过马来西亚医疗护协会的应用程序和网站查询。
www.mappac.org

安宁疗护,不只是面对死亡,更是让生命的每一天,都活得有尊严、有温度。当孩子面对严重疾病,我们能为他们做些什么?除了治疗疾病,我们还能如何减轻痛苦、守护尊严,让孩子和家人拥有更多理解、陪伴与选择?🎙️ 本周二|6.10.2026⏰ 早上 9:...
05/10/2026

安宁疗护,不只是面对死亡,
更是让生命的每一天,都活得有尊严、有温度。
当孩子面对严重疾病,我们能为他们做些什么?

除了治疗疾病,我们还能如何减轻痛苦、守护尊严,
让孩子和家人拥有更多理解、陪伴与选择?

🎙️ 本周二|6.10.2026
⏰ 早上 9:15 – 9:45
📻 Ai FM《早安爱上线》

诚邀 儿童安宁疗护专科顾问医生 李颉医生与大家一起谈谈:
❤️ 什么是儿童安宁疗护?
❤️ 安宁疗护是不是等于“放弃治疗”?
❤️ 面对生命末期,我们还能为孩子做些什么?
❤️ 如何让孩子在有限的生命里,活得更有质量、更有尊严?

安宁疗护,是守护生命的最后一程,
也是守护爱、尊严与希望的每一程。

📻 6.10.2026(二)|9:15am–9:45am
锁定 Ai FM《早安爱上线》
https://www.youtube.com/.malaysia

一起认识儿童安宁疗护,重新理解生命的意义。
因为生命的长度或许无法选择,但我们可以一起守护生命的温度。 ❤️

📸 𝗔 𝗦𝘁𝗼𝗿𝘆 𝗧𝗼𝗹𝗱 𝗧𝗵𝗿𝗼𝘂𝗴𝗵 𝗣𝗼𝗿𝘁𝗿𝗮𝗶𝘁𝘀Every photograph carries a story. Every story holds a moment.As part of World Palliative...
05/10/2026

📸 𝗔 𝗦𝘁𝗼𝗿𝘆 𝗧𝗼𝗹𝗱 𝗧𝗵𝗿𝗼𝘂𝗴𝗵 𝗣𝗼𝗿𝘁𝗿𝗮𝗶𝘁𝘀

Every photograph carries a story. Every story holds a moment.

As part of World Palliative Care Day 2026, we invite you to experience “𝗩𝗶𝗱𝗲𝗼 𝗠𝗼𝗻𝘁𝗮𝗴𝗲 & 𝗞𝗶𝗺 𝗕𝗼𝗼𝗻 𝗣𝗼𝗿𝘁𝗿𝗮𝗶𝘁𝘀” by Kim Boon - a meaningful visual journey that brings together photographs, memories and stories that remind us of the people and moments that matter.

Through these portraits, we hope to create a space to pause, connect and reflect on the experiences behind each image because sometimes, a photograph can say what words cannot.

❤️ Video Montage & Kim Boon Portraits
📅 10 October 2026 (Saturday)
⏰ 9.30 AM
📍 SunMed Convention Centre, Level 4, Tower A, Sunway Medical Centre

Come and be part of a day where we Connect • Learn • Support and celebrate the importance of every child, every family and every moment.

Registration is FREE!
Scan the QR code on our poster to register and discover more about the programme.

#安宁疗护

🎤 𝗖𝗔𝗧𝗖𝗛 𝗗𝗥 𝗟𝗘𝗘 & 𝗠𝗔𝗣𝗣𝗔𝗖 𝗕𝗢𝗢𝗧𝗛 𝗔𝗧 𝗧𝗛𝗘 𝗖𝗘𝗥𝗘𝗕𝗥𝗔𝗟 𝗣𝗔𝗟𝗦𝗬 𝗦𝗬𝗠𝗣𝗢𝗦𝗜𝗨𝗠 𝟮𝟬𝟮𝟲! 💙We’re excited to share that Dr Lee will be one of t...
05/10/2026

🎤 𝗖𝗔𝗧𝗖𝗛 𝗗𝗥 𝗟𝗘𝗘 & 𝗠𝗔𝗣𝗣𝗔𝗖 𝗕𝗢𝗢𝗧𝗛 𝗔𝗧 𝗧𝗛𝗘 𝗖𝗘𝗥𝗘𝗕𝗥𝗔𝗟 𝗣𝗔𝗟𝗦𝗬 𝗦𝗬𝗠𝗣𝗢𝗦𝗜𝗨𝗠 𝟮𝟬𝟮𝟲! 💙

We’re excited to share that Dr Lee will be one of the speakers at the Cerebral Palsy Symposium 2026, happening this 9–10 October 2026!

📅 9–10 October 2026 (Fri & Sat)
⏰ 9.00 AM – 5.00 PM
📍 Selangor International Trade Centre
(formerly Shah Alam Convention Centre)

And while you’re there, come visit the MAPPAC Advocacy Booth! 💙

Drop by to learn more about Paediatric Palliative Care, connect with the MAPPAC team, and find out how we advocate for better support and quality of life for children and families with complex needs.

📣 See you at the symposium!

💙 𝗪𝗢𝗥𝗟𝗗 𝗣𝗔𝗟𝗟𝗜𝗔𝗧𝗜𝗩𝗘 𝗖𝗔𝗥𝗘 𝗗𝗔𝗬 𝟮𝟬𝟮𝟲 💙Making moments and creating memories.Join MAPPAC x Sunway Medical Centre for a meaning...
02/10/2026

💙 𝗪𝗢𝗥𝗟𝗗 𝗣𝗔𝗟𝗟𝗜𝗔𝗧𝗜𝗩𝗘 𝗖𝗔𝗥𝗘 𝗗𝗔𝗬 𝟮𝟬𝟮𝟲 💙

Making moments and creating memories.

Join MAPPAC x Sunway Medical Centre for a meaningful day of learning, connection and support, centred on paediatric palliative care.

✨ 𝗙𝗥𝗘𝗘 𝗔𝗗𝗠𝗜𝗦𝗦𝗜𝗢𝗡 — 𝗘𝗩𝗘𝗥𝗬𝗢𝗡𝗘 𝗜𝗦 𝗪𝗘𝗟𝗖𝗢𝗠𝗘!

🎓 WORKSHOPS
On caregiver empowerment, practical skills, communication and more, including session by Dr Lee Chee Chan, Consultant Paediatric Palliative Care Practitioner.

🤝 EXPLORE OUR BOOTHS
Meet our healthcare, caregiving and community partners. Learn, connect and discover ways to support families.

💛 ALSO FEATURING:
* Family stories & palliative care journeys
* Photographer Lim Kim Boon Paediatric Palliative Care Family Portraits
* The Stories We Carry photography talk
* Interactive activities & more

📅 10 October 2026 (Saturday)
⏰ 8.30 AM – 4.00 PM
📍 SunMed Convention Centre, Level 4, Tower A

Come explore, learn and connect with us.

Because every child, every family, every moment matters. 💙

30/09/2026

A life-limiting diagnosis doesn't decide how well a child lives. The right care does. That's what paediatric palliative care is all about.

Join us LIVE on Facebook with 𝗗𝗿 𝗟𝗲𝗲 𝗖𝗵𝗲𝗲 𝗖𝗵𝗮𝗻, 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝗻𝘁 𝗣𝗮𝗲𝗱𝗶𝗮𝘁𝗿𝗶𝗰 𝗣𝗮𝗹𝗹𝗶𝗮𝘁𝗶𝘃𝗲 𝗣𝗵𝘆𝘀𝗶𝗰𝗶𝗮𝗻, as he debunks common misconceptions about paediatric palliative care and explains how it can help children with life-limiting conditions and their families.

📆 11 October 2026 (Sunday)
🕧 11.00 am (GMT +8)

💬Don’t miss your chance to have your questions answered live!
🎁3 lucky viewers will each win a 𝗥𝗠𝟱𝟬 𝗧𝗼𝘂𝗰𝗵 ‘𝗻 𝗚𝗼 𝗥𝗲𝗹𝗼𝗮𝗱 𝗣𝗶𝗻!

𝗖𝗹𝗶𝗰𝗸 "𝗚𝗼𝗶𝗻𝗴" 𝗻𝗼𝘄 𝘀𝗼 𝘆𝗼𝘂 𝗱𝗼𝗻'𝘁 𝗺𝗶𝘀𝘀 𝗶𝘁: https://www.facebook.com/share/19jomNiAnD/

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Petaling Jaya

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