Consumer health information needs and preferences ... Consumer health information needs and...

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  • April 2017

    Consumer health information needs and preferences: Perspectives of culturally and linguistically diverse and Aboriginal and Torres Strait Islander people

    The Cultural and Indigenous Research Centre Australia (CIRCA) have prepared this report on behalf of the Australian Commission on Safety and Quality in Health Care.

  • Published by the Australian Commission on Safety and Quality in Health Care Level 5, 255 Elizabeth Street, Sydney NSW 2001 Phone: (02) 9126 3600 Fax: (02) 9126 3613 Email: [email protected] Website: www.safetyandquality.gov.au

    ISBN: 978-1-925224-85-6 © Commonwealth of Australia 2017 All material and work produced by the Australian Commission on Safety and Quality in Health Care is protected by Commonwealth copyright. It may be reproduced in whole or in part for study or training purposes, subject to the inclusion of an acknowledgement of the source. The Commission’s preference is that you attribute this publication (and any material sourced from it) using the following citation:

    Cultural and Indigenous Research Centre Australia. Consumer health information needs and preferences: perspectives of culturally and linguistically diverse and Aboriginal and Torres Strait Islander people. Sydney: ACSQHC; 2017

    Enquiries regarding the use of this publication are welcome and can be sent to [email protected]

    http://www.safetyandquality.gov.au/ mailto:[email protected]

  • Preface The Australian Commission on Safety and Quality in Health Care (the Commission) is committed to supporting meaningful partnerships with consumers as a way of improving the safety and quality of health care in Australia. Providing understandable and accessible health information can improve people’s knowledge, understanding and recall about their health and care. It can also increase their feelings of empowerment, improve their ability to cope, increase satisfaction, support shared decision making and contribute to improved health literacy, so that people can be partners in their health care. Today, people expect information to be easily available in a format that they understand. People seek out, or are provided with, health information from a variety of sources including:

    • their social community, including their parents, families, friends, neighbours and work colleagues

    • the education system, including preschools, primary and secondary schools, adult education centres and universities

    • the health, social and community care systems, including care providers, health organisations, and government and nongovernment care organisations

    • private industry, including manufacturers and providers of food, pharmaceuticals, alcohol, exercise products and services

    • mass media, including health promotion campaigns, the internet and private companies promoting their health-related products.

    The Commission wants to support consumers to understand safety and quality issues for health care, and aims to develop information materials for consumers in key areas of interest. The Commission understands that for some populations there may be different requirements, expectations, experiences, needs and preferences when it comes to information about health and health care, and different understanding and perspectives on safety and quality. The Commission engaged the Cultural and Indigenous Research Centre Australia (CIRCA) to explore the experiences and perspectives of two populations: culturally and linguistically diverse (CALD) and Aboriginal and Torres Strait Islander people. Specifically, CIRCA sought to understand specific issues for these populations in relation to their needs and preferences for health information and information about safety and quality. In parallel to this work, the Commission engaged the Sax Institute to broker a rapid evidence review on consumer health information needs and preferences. This report is entitled Consumer health information needs and preferences: A rapid evidence review and can be found on the Commission’s website.

  • Key points CIRCA conducted seven focus groups across four CALD communities (Chinese, Vietnamese, Lebanese and Iraqi) and six focus groups with Aboriginal and Torres Strait Islander people from urban and regional communities. In-depth interviews were also conducted with Aboriginal health workers from remote communities. The focus groups and interview process identified a number of key issues within and across the CALD and Aboriginal and Torres Strait Islander groups. Both groups considered that their confidence in seeking out, accessing and understanding health information was significantly influenced by a combination of their culture and their experience. Both CALD and Aboriginal and Torres Strait Islander participants preferred simple, plain- language information to be available in both English and their first language. Both groups were seeking information that was short and visually appealing. Aboriginal and Torres Strait Islander participants reported a preference for information with a culturally appropriate visual design. The majority of CALD participants were seeking to be more involved in their health care, but reported a lack of information and confidence to question doctors. They expressed a strong preference for bilingual general practitioners to meet their language needs. However, there were differing views about capacity for openness, privacy and confidentiality when working within small communities. Aboriginal and Torres Strait Islander participants reported not feeling culturally safe in hospitals, especially when there was no Aboriginal healthcare worker to provide support and alleviate their concerns. Key themes for Aboriginal and Torres Strait Islander participants included feelings of ‘shame’ in not understanding healthcare information or asking questions of doctors, and difficulties when having to travel far from home for health care. There was also a preference for culturally sensitive in-person support and information to be provided through face-to-face discussions. The researchers highlighted a range of opportunities for better aligning health information with the needs and preferences of CALD and Aboriginal and Torres Strait Islander people, such as:

    • engaging multicultural agencies, consumer organisations and local groups to assist in identifying information priorities for CALD consumers, facilitating access to and acting as a conduit for healthcare information delivery

    • including tailored strategies and information materials in broader health information communication programs

    • enhancing access to culturally appropriate resources, in consumers’ first language, on health issues

    • working with Aboriginal and Torres Strait Islander health and consumer organisations to identify information priorities, to develop tailored information materials and to support strategies for accessing culturally appropriate information through a variety of mechanisms.

  • Next steps The Commission’s work on health literacy, partnerships with consumers and actions within the National Safety and Quality Health Service (NSQHS) Standards (second edition) all highlight the importance of understanding the diversity of consumers, tailoring strategies for vulnerable groups, and the importance of developing high-quality easy to understand health information to support effective partnerships. The Commission will consider the findings of this targeted consultation with Aboriginal and Torres Strait Islander people and CALD communities, and the associated rapid evidence review, to develop guidance and key principles that should be considered when developing health information for consumers, including information on safety and quality. This guidance will be used by the Commission when developing resources for consumers, and will also be provided to stakeholders to support the development of consumer health information and to help support health services to meet the requirements of the NSQHS Standards (second edition).

  • TRIM: D16-42685

    Consumer health information needs and preferences: Perspectives of culturally and linguistically diverse and Aboriginal and Torres Strait Islander people

    Final Report for the Australian Commission on Safety and Quality in Health Care

    April 2017

  • Developed by the Cultural & Indigenous Research Centre Australia 2017

    All research conducted by CIRCA for this project was in compliance with ISO20252

  • i

    Contents

    Executive summary .................................................................................................................................. i

    CALD findings.................................................................................................................................. ii

    Aboriginal and Torres Strait Islander findings ................................................................................. v

    1. Introduction ........................................................................................................................................ 1

    1.1 Background ................................................................................................................................... 1

    2. Methodology ...............................................................................................................