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

Transcripts اقرأ أو تنزيل البرامج النصية للبودكاست

中文普通话播客

Narrated by: Natalie Deng

由娜塔莉·丁叙述。

Transcripts 阅读或下载中文播客的文字笔录

हिंदी में पॉडकास्ट।

Narrated by: Monica Sharma

इसे मोनिका शर्मा ने रिवायत किया है।

Transcripts पॉडकास्ट के लिए स्क्रिप्ट पढ़ें या डाउनलोड करें।

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)