Enhancing digital inclusion to enhance carer wellbeing in ...

Enhancing digital inclusion to enhance

carer wellbeing in rural NSW

8th Rural Innovations Changing Healthcare Forum

24 March 2021

I would like to acknowledge the Traditional Custodians of this Land. I would

also like to pay respect to the Elders both past and present and extend that

respect to other Aboriginal people here today.

Acknowledgment of Country

About Carers NSW

Carers NSW is the peak non-government organisation for carers in New South

Wales (NSW). Our goals are to:

• Be a leading carer organisation in which carers have confidence

• Actively promote carer recognition and support

• Actively support carers to navigate a changing service landscape that will

be characterised by ongoing policy reform

• Promote connected community experiences and opportunities for carers

that are inclusive of diverse carer groups

• Lead and advocate for carer-specific and carer-inclusive policy making,

research and service delivery

• Continue to be a quality-driven, responsive and carer-focused organisation.

• What we know about carers in rural and regional areas:

• Health service usage

• Digital literacy/access

• Recent changes and challenges:

• ‘Black summer’ bushfires

• COVID-19 pandemic

• Carer Gateway rollout

• Carers NSW digital literacy/access initiatives

• Digital Access Points

• Connecting Carers Online

Presentation outline

• Provide care and support to a family member

or friend who has a disability, mental illness,

drug and/or alcohol dependency, chronic

condition, terminal illness or who is frail.

• This definition does not include:

• paid care workers

• formal volunteers

• parents / foster carers / kinship carers

• 854,300 carers in NSW, including

approximately 273,900 primary carers *

* 2018 Survey of Disability, Ageing and Carers

Who are carers?

What we know about carers

Carers in rural and regional areas

• State-wide survey of family and friend carers in NSW (aged 16+ years),

developed in consultation with expert reference committee

• Conducted nationally for the first time in 2020 with the support of the

state and territory Carer Associations

• Range of topics to inform research and advocacy:

o The caring relationship

o Services and support

o Experiences of paid work

o Health and wellbeing

• Survey distributed in online and hard copy form

Carers NSW biennial Carer Survey


• Represents around 1 in 3 carers

• Higher rates of disability and

chronic health conditions

• Lower service availability

• Lower high school completion,

lower labour force participation

• Higher costs of caring

• More socio-economic disadvantage

• Telecommunications issues

Rural and remote carers


“Living in rural NSW, services of any

kind are few and far between. At times,

this has a substantial impact on my

ability to be the best carer I can be as

often I am exhausted, feel isolated and

overwhelmed.”

Respondent to 2016 Carer Survey

“The additional challenges faced by

carers who live in rural and remote

areas should be acknowledged and

recognised”.

Carers (Recognition) Act 2010 NSW

• Lower usage of mobile phone for accessing internet

• Higher rate of financial hardship

• Otherwise fairly similar level of online engagement to other areas

Carers NSW 2018 Carer Survey


Sydney region Newcastle and

Wollongong regions

Non-metropolitan

regions

Used internet on a computer in

past 3 months1

84% 86% 82%

Used internet on a mobile phone

in past 3 months

87% 85% 83%

Difficulty meeting living expenses2 36% 41% 48%

Never used online peer support

forum3

62% 64% 58%

1 n=1643 2 n=1617 3 n=1482

• Slightly lower confidence levels with digital engagement

• Relatively high overall confidence with digital engagement, but lowest for

accessing services online

• Similar levels of acute financial stress, approx. 1 in 5

Carers NSW 2020 National Carer Survey


Confident /

very confident

finding

information

online1

Confident /

very confident

accessing

support

services online2

Confident /

very

confident

communicat

ing online3

Three or more

financial stress

experiences in

past 12

months4

Major Cities of Australia 68% 59% 74% 22%

Inner Regional Australia 60% 51% 67% 20%

Outer Regional Australia 59% 51% 66% 21%

Remote / Very Remote Australia 66% 55% 72% 15%

1 n=5043 2 n=4984 3 n=4979 4 n=4966

• NSW respondents overall indicated that it was relatively uncommon for

public and community health services ask about carers’ needs and provide

carer specific support

Carers NSW 2020 National Carer Survey


0

10

20

30

40

50

60

70

Hospital asked aboutcarer needs

Hospital providedcarer with

information

Sufficient carersupport options and

facilities

%

Agree Disagree

Recent changes and challenges

• Many rural and regional areas in NSW

affected

• Delayed, confusing and limited

information about level of risk,

evacuation and support

• Very little messaging or planning

tailored to the needs of people with

disability, older people and their carers

• Recent Disability Royal Commission

report: carers “at risk of systemic

neglect during natural disaster

emergencies.”

‘Black summer’ bushfires


• Closure and reduction of in-person

services, businesses and activities

• Enforced restrictions on public movement

and private gatherings

• Anxiety and reluctance to move around

the community

• Visitor restrictions in residential care

environments

• Reduced face to face social contact

• Rapid digitisation of services

COVID-19 pandemic


• Not all services offer high quality, engaging accessible digital

alternatives – or any at all!

• Not everyone can, or wants to, engage in digital services

• Barriers preventing effective uptake:

o Digital literacy and confidence

o Resources to purchase/upgrade adequate devices

o Resources to pay for adequate internet quality, speed and data

o Mobile and internet coverage and reception

o Competition between household members for use of devices

o Lack of space and privacy for accessing digital services

COVID-19 pandemic


Carer Gateway rollout – April 2020


Carer Support Planning

In-Person Peer Support

In-Person Counselling

Emergency Respite Care

Carer Directed Support

In-Person Carer Coaching (from 2021)

www.carergateway.gov.au

1800 422 737

http://www.carergateway.gov.au/

• Carers rely on clear, timely and tailored information about the risks they

face and the support available to them and the people they care for

• Many carers have access to digital devices and engage with these

when seeking information and support

• Many other carers are not able to effectively access information and

support through digital means, for a range of reasons

• ‘Forced’ innovation during the pandemic has shown us that much more

can be done digitally, if users adequately supported

• Opportunities to continue and expand telehealth and other online

service offerings should be pursued – but equity is critical

Learnings and opportunities


Digital access/literacy initiatives

• Carers are experiencing considerable stress, with everyday pressures

exacerbated by the bushfires and pandemic

• Carer Gateway offers a range of in-person, phone based and online

services, but due to COVID-19, the face to face options have been

limited until recently, especially in more remote areas and smaller

communities

• Many mental health supports have been developed and promoted within

and outside of Carer Gateway during the pandemic, but awareness and

uptake has been lower than expected

• Carers have reported that there are many barriers to them accessing

carer and mental health supports when they do exist, e.g. time, energy,

resources, privacy, ability to focus on their own needs

The problem


• Enable more carers to access digital carer and mental health services,

which are more flexible and less costly:

o Improve digital literacy among carers

o Address financial and geographical barriers to digital access

One proposed solution


• Partnership with PCYCs in Carers NSW Carer Gateway region: Hunter

New England, Central Coast, North Coast (NSW 4)

• Physical access points for carers to access Carer Gateway website and

engage with in-person services online

• 7 sites (laptops and signage) set up in early 2021:

• Grafton• Muswellbrook• Tweed Heads• Moree• Armidale• Tamworth• Kempsey

Digital Access Points (DAPs)


• Early challenges and delays with establishment due to COVID-19

restrictions

• Usual challenges of carer identification amplified by limited awareness

of Carer Gateway

• Challenge and opportunity of bringing carer services into a mainstream

community environment

• Usage and awareness starting to increase, allowing for trialling different

approaches to promotion and monitoring

• Evaluation will consider whether DAPs have allowed for new

engagement with: carers with no device/internet at home or low digital

literacy; hidden carers not identifying or unaware of Carer Gateway

Digital Access Points (DAPs)


• Increasing carers’ digital literacy and

connection with loved ones and services

• Delivered under Carer Gateway in

Hunter New England, Central Coast and

North Coast

• Access to iPads, data and group

learning sessions for up to 100 carers

with low digital literacy and/or other

digital access barriers

• Focus on connecting carers who are

socially isolated, including where

exacerbated by COVID-19

Connecting Carers Online


• Delivered in partnership with YourLink

• YourLink is a leading Apple Consultant

Network member focused on Aged Care

and Community Care in Australia and a

Be Connected partner.

• YourLink is experienced in delivering

digital training to seniors, increasing

their confidence with using smart

devices

• 2,500 seniors trained so far through ‘Tea

and Technology’ events



• 100 iPads and cases, cellular data 65 GB per month, Applecare +

Support (2 years)

• One to one introduction session to assist the carer to get online, set up

password and email account, test Zoom connection and demonstrate

how Zoom works.

• Four online group learning sessions:

• Basics and getting comfortable with device

• Connecting with family, online carer activities

• Being online: apps, interests and hobbies

• Being online: Apple apps and creating content



• Demographic, geographic and baseline technology access/use details

collected at registration

• Initial session identifying key aspirations/interest and recording trainer

observations with regard to knowledge, skills and confidence

• Final session revisiting stated aspirations/interests and recording trainer

observations with regard to changes in knowledge, skills and confidence

• Carer feedback survey two weeks after course completion, recording

their reflections on overall change in knowledge, skills and confidence,

as well as wellbeing, connection and capability questions and Most

Significant Change



• 67 Participants as of 18 March 2021

• 62 female carers, 5 male carers

• Aged 33 – 81 years

• 4 Aboriginal and Torres Strait Islander carers

• 3 culturally and linguistically diverse (CALD) carers

• 40 caring for someone living with a mental illness

• 34 carers identifying their own mental health challenges

• Commencing rollout, with iPad distribution and online session delivery

anticipated to be complete end June 2021

• Initial report on pilot outcomes mid-2021

• Continued support and longer term evaluation into 2022



• Roll out and monitor both projects, making adjustments to improve

uptake and effectiveness

• Report on outcomes and evaluate models for continuation / expansion

• Share results with the sector to allow for better understanding of how to

reach carers and overcome digital access/literacy barriers

• Look for other opportunities to develop and adapt these models

• Actions for health service providers:

• Prioritise carer inclusion and support

• Ensure equitable access to digital services

• Promote Carer Gateway services to carers in your networks

Next steps

Conclusion

Thank you for listening

Australian Bureau of Statistics 2018 Survey of Disability, Ageing and Carers, Table Builder analysis

Australian Institute of Health and Welfare (2018) Australia’s Health 2018: In brief

Carers NSW (2016) Carers NSW 2016 Carer Survey, unpublished data

Carers NSW (2018) Carers NSW 2018 Carer Survey: Summary report

Carers NSW (2020) Carers NSW 2020 National Carer Survey, unpublished data

Carers NSW (2020) COVID-19 and carers: A review of the evidence

Carers NSW (2020) The COVID-19 Pandemic: Challenges and opportunities for carers in NSW

Dew, A., et al (2013) ‘Addressing the barriers to accessing therapy services in rural and remote areas’, Disability and Rehabilitation,

vol. 35, no. 18, pp. 1564-1570

Edwards, B. et al (2009), The tyranny of distance? Carers in regional and remote areas of Australia, Prepared for Carers Australia by

the Australian Institute of Family Studies

Hill, T. Thomson, C. and Cass, B. (2008) The costs of caring and the living standards of carers, Social Policy Research Paper No. 43,

Social Policy Research Centre, University of New South Wales

O’Sullivan, S. and Walker, C (2018) From the interpersonal to the internet: social service digitisation and the implications for vulnerable

individuals and communities, Australian Journal of Political Science, vol. 53, no. 4, pp. 490-507.

Schirmer, J. (2017) Carers in regional Australia: 2016 Regional Wellbeing Survey report, Health Research Institute, University of

Canberra, Canberra.

Winterton, R. and Warburton, J. (2011), ‘Models of care for socially isolated older rural carers: barriers and implications’, Rural and

Remote Health (online) vol. 11, no. 1678.

References

https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release

https://www.aihw.gov.au/reports/australias-health/australias-health-2018/contents/table-of-contents

http://www.carersnsw.org.au/research/survey



http://www.carersnsw.org.au/policy/changing-systems

http://www.carersnsw.org.au/policy/changing-systems

www.carersnsw.org.au

Sarah Judd-Lam | Manager, Policy and Research

[email protected]

02 9280 4744

mailto:[email protected]

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