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In our own voices

Welcome to ‘In our own voices’, a series of podcasts that capture carers’ conversations about palliative care services. Listen in as carers share their personal experiences caring for someone living with a life-limiting illness, and their advice to other carers experiencing palliative care now or preparing to use it in the near future. The recordings are available in four languages; Arabic, Chinese, Hindi and English.

Each podcast includes six short 10-minute chapters featuring health professionals and carers discussing various themes such as:

  • What is palliative care?
  • How does it work?
  • How to request culturally appropriate and sensitive care?
  • Decision-making during palliative care, and
  • Planning ahead.

If you are supporting a carer, friend, family member or someone with a life-limiting illness from a CALD background, you can help them by listening to their concerns and sharing this information with them. The carers’ stories can assist them to understand the value of palliative care and advance care planning for themselves and others.

البودكاست باللغة العربية

Narrated by: Mariette Mikhael

رواه: مارييت ميخائيل

Chapter 1, Welcome

يهدف التسجيل إلى إعطاء المستمع مقدمة عن الرعاية التلطيفية. يتم تقديمنا لمقدمي الرعاية الذين يبدأون في مشاركة قصصهم القلبية وشرح ما كان عليه الحال عندما سمعوا لأول مرة عن الرعاية التلطيفية ونأمل أن تجد هذا مفيدًا سواء كنت تقدم الرعاية لشخص ما الآن ، أو ربما في المستقبل

Chapter 2, What is palliative care?

المفتاح لاتخاذ القرارات الصحيحة بشأن الرعاية التلطيفية هو فهم ما تنطوي عليه. في هذا الفصل ، سوف نستكشف بعض القرارات والخيارات التي يتعين على مقدمي الرعاية اتخاذها ، خاصة وأن الثقافة والتقاليد لعبت دورًا مهمًا في حياتهم الأسرية

Chapter 3, What is culturally appropriate support?

في هذا الفصل سوف نستكشف الرعاية التلطيفية والتأثيرات الثقافية التي قد تؤثر على كيفية استجابتنا وكيف نتلقى دعم الرعاية التلطيفية

Chapter 4, How does palliative care work?

يهدف التسجيل إلى إعطاء المستمع مقدمة عن الرعاية التلطيفية. يتم تقديمنا لمقدمي الرعاية الذين يبدأون في مشاركة قصصهم القلبية وشرح ما كان عليه الحال عندما سمعوا لأول مرة عن الرعاية التلطيفية ونأمل أن تجد هذا مفيدًا سواء كنت تقدم الرعاية لشخص ما الآن ، أو ربما في المستقبل

Chapter 5, What do they mean by planning ahead?

يهدف التسجيل إلى إعطاء المستمع مقدمة عن الرعاية التلطيفية. يتم تقديمنا لمقدمي الرعاية الذين يبدأون في مشاركة قصصهم القلبية وشرح ما كان عليه الحال عندما سمعوا لأول مرة عن الرعاية التلطيفية ونأمل أن تجد هذا مفيدًا سواء كنت تقدم الرعاية لشخص ما الآن ، أو ربما في المستقبل

Chapter 6, Where to from here?

يهدف التسجيل إلى إعطاء المستمع مقدمة عن الرعاية التلطيفية. يتم تقديمنا لمقدمي الرعاية الذين يبدأون في مشاركة قصصهم القلبية وشرح ما كان عليه الحال عندما سمعوا لأول مرة عن الرعاية التلطيفية ونأمل أن تجد هذا مفيدًا سواء كنت تقدم الرعاية لشخص ما الآن ، أو ربما في المستقبل

Transcripts اقرأ أو تنزيل البرامج النصية للبودكاست

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I was part of the consultation, and after listening to the final podcasts, I am so proud. I hope all carers listen to these stories and find hope and options. Looking back, I wish I had these stories and voices to help me through that very difficult time. What is most important is the final message: you are not alone and the palliative care team understands our cultural needs. Don’t be afraid to reach out.

Rosie Arabic carer

中文普通话播客

Narrated by: Natalie Deng

由娜塔莉·丁叙述。

Chapter 1, Welcome

第一章 欢迎

欢迎收听舒缓护理的播客。灵感来自于用我自己的声音,让用过舒缓护理的照顾者开始讲述他们自己的故事。首先让
我们来倾听他们在第一次听到舒缓护理时的反应。

Chapter 2, What is palliative care?

第二章 什么是舒缓护理

在这一章里我们来听听医护专业人士、专业护理人员向您阐述舒缓护理的医学定义,它包涵哪些部分?也让您分享照
顾者的心声,看看照顾者都作出些什么选择和决定,文化和传统有否对决策有影响?

Chapter 3, What is culturally appropriate support?

第三章 适合文化和传统的支持

在本章中,我们将进一步探讨舒缓护理,收听更多照顾者的故事,分析文化和传统是否可能影响到我们如何看待以及 如何获取舒缓护理。

Chapter 4, How does palliative care work?

第四章 舒缓护理的具体操作

在本章中我们将讨论舒缓护理的工作原理。由谁来组织舒缓护理以及通过舒缓护理服务提供哪些选择、服务和网络化
的帮助机制。有很多专业医护人员和照顾者分享他们的经验

Chapter 5, What do they mean by planning ahead?

第五章 提前计划

在本章中我们将探讨舒缓护理阶段的决策,我们还将探讨提前计划的重要性。来听听更多的真人真事吧。

Chapter 6, Where to from here?

第六章 结语和更多的链接

在最后一章中,敦促照顾者尽早开始和专业医护人员之间的重要对话,同时为大家提供更多的网上资源。

Transcripts 阅读或下载中文播客的文字笔录

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I provided a quote and was interviewed for the podcasts. Now, listening to the final podcast, I am so proud. In the beginning it was hard to open up and talk about such sensitive things. But knowing I will help other people has made it worthwhile.
Lei Mei Chinese carer

हिंदी में पॉडकास्ट।

Narrated by: Monica Sharma

इसे मोनिका शर्मा ने रिवायत किया है।

Chapter 1, Welcome

रिकॉर्डिंग का उद्देश्य श्रोता को उपशामक देखभाल का परिचय देना है। हमें उन देखभालकर्ताओं से परिचित कराया जाता है जो अपनी हार्दिक कहानियों को साझा करना शुरू करते हैं और समझाते हैं कि जब उन्होंने पहली बार उपशामक देखभाल के बारे में सुना था तो यह कैसा था। हमें उम्मीद है कि आपको यह मददगार लगेगा, चाहे आप अभी किसी की देखभाल कर रहे हों, या शायद भविष्य में

Chapter 2, What is palliative care?

उपशामक देखभाल के बारे में सही निर्णय लेने की कुंजी यह समझना है कि इसमें क्या शामिल है। इस अध्याय में, हम उन कुछ निर्णयों और विकल्पों का पता लगाएंगे जिन्हें देखभालकर्ताओं को करना था, खासकर जब संस्कृति और परंपरा ने उनके पारिवारिक जीवन में महत्वपूर्ण भूमिका निभाई।

Chapter 3, What is culturally appropriate support?

इस अध्याय में हम उपशामक देखभाल और सांस्कृतिक प्रभावों का पता लगाएंगे जो प्रभावित कर सकते हैं कि हम कैसे प्रतिक्रिया देते हैं और हमें उपशामक देखभाल सहायता कैसे प्राप्त होती है।

Chapter 4, How does palliative care work?

इस अध्याय में, हम चर्चा करेंगे कि उपशामक देखभाल कैसे काम करती है, कौन उपशामक देखभाल का प्रबंधन/नियमन करता है और उपशामक देखभाल के माध्यम से प्रदान किए जाने वाले विभिन्न विकल्पों और सेवाओं पर।

Chapter 5, What do they mean by planning ahead?

इस अध्याय में हम उपशामक देखभाल के दौरान निर्णय लेने की प्रक्रिया का पता लगाएंगे। हम यह भी पता लगाएंगे कि आगे की योजना के रूप में क्या संदर्भित किया जाता है।

Chapter 6, Where to from here?

यह अंतिम अध्याय है। हम स्वास्थ्य पेशेवरों और देखभाल करने वालों का अंतिम संदेश सुनते हैं और उन लोगों के बारे में अधिक सीखते हैं जिन्होंने पॉडकास्ट विकसित किया है।

Transcripts पॉडकास्ट के लिए स्क्रिप्ट पढ़ें या डाउनलोड करें।

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I found it very emotional listening to so many of our carers struggling while caring for someone near their end of life. The advice and stories in the podcasts are incredibly real and honest. I hope more people listen to these and find help and advice during these difficult times. The message that you are not alone is very encouraging.

Lopa Hindi carer

Chapter 1, Welcome

The recording aims to give the listener an introduction to palliative care. We are introduced to the carers who begin to share their heartfelt stories and explain what it was like when they first heard about palliative care. We hope you will find this helpful, whether you are providing care to someone now, or perhaps in the future.

Chapter 2, What is palliative care?

The key to making the right decisions about palliative care is to first understand what it entails. In this chapter, we will explore some of the decisions and choices carers had to make, especially as culture and tradition played an important role in their family life.

Chapter 3, What is culturally appropriate support?

In this chapter, we will explore palliative care and the cultural influences that may affect how we respond to, and how we receive, palliative care support.

Chapter 4, How does palliative care work?

In this chapter, we will discuss how palliative care works, who manages and regulates palliative care, and the different options and services provided through palliative care.

Chapter 5, What do they mean by planning ahead?

In this chapter, we will explore the decision-making process during palliative care. We will also explore what is referred to as ‘planning ahead’.

Chapter 6, Where to from here?

In this final chapter, we hear the health professionals’ and carers’ final messages, and we learn more about the people who developed the podcast.

Transcripts

The name of this resource was inspired by the original ECCNSW digital CALD storybook titled ‘In my own words’, developed by the members of the NSW Multicultural Access Network and ECCNSW. The Carers NSW resource will become part of the ‘In my own words’ library. This library focuses on the carer delivering key messages derived from their lived experiences, thus providing carers with a sense of trust and a level of expertise.

Carers from Arabic-speaking, Chinese-speaking, and Hindi-speaking backgrounds were engaged through the ECCNSW bilingual facilitators and advisory group. Carers participated in focus groups, individual and group interviews. These were conducted over the phone or via Zoom to record their stories. Men and women from 26 to 82 years of age, across the four (4) language groups were involved. Over 43 CALD carers participated in the program.

While it was challenging for carers to discuss palliative care, the results were incredibly rewarding for them.

Many caregivers from Arabic, Chinese and Hindi families didn’t know at the time that their experience caring for a loved one could be considered palliative care. The carers stated that when sharing their story about being in this difficult position, many listeners commented that it was very important to have good support around them during this time. When asked to reflect on the interview for ‘In our own voices’, they said they learnt so much from telling their story as part of this program. One carer’s words of advice for other people going through tough times was ‘you are not alone’ and ‘reach out and ask for help’.

About the advisory group

The CALD Palliative Care Project Advisory Group was established by Carers NSW to provide input into the design and implementation of the project aimed at improving service delivery for CALD carers. The advisory group consists of members from peak bodies and organisations who are experienced in working with the CALD community and palliative care health professionals. The members included:

  • Ethnic Communities’ Council of NSW
  • Calvary Health Care, Kogarah
  • Multicultural Communities’ Council of Illawarra
  • Ethnic Community Services Co-operative

The members provided advice on the design and content of the project, including feedback on the online platform. They also assisted in the additional recruitment of CALD participants for interviews, reviewed findings from the interviews, and advised on appropriate information to be included in the online resource.

About the bilingual facilitators

The Arabic-speaking, Chinese-speaking and Hindi-speaking facilitators selected for the program are highly skilled, receptive to, and understood, the cultural nuances that can play a significant role in how carers from CALD communities communicate their views about palliative care. They also have an innate ability for language-rich expression, which assisted them to translate concepts into culturally appropriate messages.

For Arabic, Chinese and Hindi carers who speak English as a second language and required assistance communicating their ideas about palliative care, our bilingual facilitators offered options for conveying information between cultures. It was important to carefully select facilitators who had language, cultural and research expertise and were able to work closely with the Arabic, Chinese or Hindi carers to capture their heartfelt stories about palliative care.

The interview framework used by the facilitators allowed carers to share the stories that matter the most to them, giving a voice to previously silenced narratives around palliative care. In each case, bilingual facilitators helped bridge these cultural gaps for a more inclusive and culturally sensitive experience in which both parties can be understood equally.

In this way, carers received high-quality support from people with a deep understanding of their culture and language.

We would like to thank the many carers who participated in the program consultations, recordings and review of content.

ونود أن نشكر العديد من مقدمي الرعاية الذين شاركوا في البرنامج والمشاورات والتسجيلات ومراجعة المحتوى.

鸣谢参与方案磋商、录音和内容审查的许多照顾者。

हम कार्यक्रम परामर्श, रिकॉर्डिंग और सामग्री की समीक्षा में भाग लेने वाले कई देखभालकर्ताओं को धन्यवाद देना चाहते हैं।

We would like to thank the many people who contributed to the program by recording their voices for the carers who wish to remain anonymous.

نود أن نشكر العديد من الأشخاص الذين ساهموا في البرنامج من خلال تسجيل أصواتهم لمقدمي الرعاية الذين يرغبون في عدم الكشف عن هويتهم

鸣谢为无记名的照顾者配音的各方人士。

हम उन कई लोगों को धन्यवाद देना चाहते हैं जिन्होंने गुमनाम रहने की इच्छा रखने वाले देखभालकर्ताओं के लिए अपनी आवाज रिकॉर्ड करके कार्यक्रम में योगदान दिया।

We would like to thank the many health professionals who participated in the program, recordings and review of resources.

نود أن نشكر العديد من المهنيين الصحيين الذين شاركوا في استشارات البرنامج والتسجيلات ومراجعة الموارد لضمان جودة ودقة البودكاست

鸣谢专业医护人员、专业护理人员参与方案磋商、录音、审查和确保播客信息准确高质量。

हम पॉडकास्ट की गुणवत्ता और सटीकता सुनिश्चित करने के लिए कार्यक्रम परामर्श, रिकॉर्डिंग और संसाधनों की समीक्षा में भाग लेने वाले कई स्वास्थ्य पेशेवरों को स्वीकार करना और धन्यवाद देना चाहते हैं।

We would also like to acknowledge and thank the remaining 19 CALD carers who participated in the project but requested to remain anonymous. Your input and contribution have been invaluable and we thank you for opening your hearts and sharing your personal stories and experiences.

نود أيضًا أن نشكر 19 مقدم رعاية من الذين شاركوا في المشروع لكنهم طلبوا عدم الكشف عن هويتهم. لقد كانت مساهمتك لا تقدر بثمن ونشكرك على فتح قلبك ومشاركة تجربتك الشخصية

我们还要鸣谢其余接受了舒缓护理的采访但选择作为无记名的照顾者,由衷感谢他们敞开心扉为我们分享了他们的经验和感受,感谢他们的投入和奉献。

हम परियोजना में भाग लेने वाले शेष देखभालकर्ताओं को भी स्वीकार करना और धन्यवाद देना चाहते हैं लेकिन गुमनाम रहने का अनुरोध करते हैं। आपका इनपुट और योगदान अमूल्य रहा है और हम आपके दिल खोलने और अपनी व्यक्तिगत कहानियों और अनुभवों को साझा करने के लिए धन्यवाद करते हैं।

Translations, content checking and coordination of content and the quality assurance processes conducted by ECCNSW;

  • Patricia Jacinta Vaz for the Hindi podcasts and accompanying resources
  • Wenying Han for the Chinese podcasts and accompanying resources
  • Mariette Mikhael for the Arabic podcasts and accompanying resources
  • Multilingual Language Services (Public Connect Australia)