A new online program for carers of people experiencing depression - - PowerPoint PPT Presentation

A new online program for carers of people experiencing depression or anxiety

Dr Sally Fitzpatrick Presented by Dr Zoi Triandafilidis and Ms Kim McNaughton Carers NSW Conference 2019

I would like to acknowledge the Gadigal people of the Eora Nation, the First Nations peoples of this land and pay my respects to Elders, past, present and emerging and to all Aboriginal people among us, today.

Acknowledgment of Country

Prevalence of mental ill-health

Mental and substance use disorders are the second largest contributor

• f the non-fatal burden of disease in Australia
• 1 in 5, or more than 3 million Australians between 16 to 85 years of age,

experience symptoms of anxiety and depression in any given year (Australian Bureau of Statistics, ABS, 2008).

• Severe depression and severe anxiety comprise 50 per cent of mental illnesses

(Australian Institute of Health and Welfare, AIHW, 2016).

• Almost 1 in 2 (46%) of people with a mental illness access specialist mental

health services (Whiteford et al., 2014).

Who are mental health carers?

• Relatives, friends and/or neighbours providing care to those experiencing depression or anxiety
• A carer is an individual who provides personal care, support and assistance to another individual who

needs it because that other individual … has a mental illness (Carer Recognition Act 2010).

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• Around 240,000 Australians provide informal care for a person living with

mental illness (Diminic et al., 2017):

• Majority are female (54.4%), and of working age (72.8%),(Diminic et al., 2017).
• Carers help to manage symptoms; provide practical or functional assistance; provide
• ngoing emotional support (Pirkis et al., 2010).
• Caring can be episodic and unpredictable.
• Experience higher levels of psychological distress (esp. depression) than the

general population (Aggar 2016a; Torres et al., 2015).

• Mental health carers experience other challenges such as loneliness and

isolation, financial difficulties, reduced work and study opportunities, and increased stigma due to their caring role (Aggar 2016b; Broady & Stone, 2015; Butterworth et al., 2010).

Experiences of mental health carers

Initiative co-led by Black Dog Institute and Everymind aimed at preventing anxiety and depression through research. Steering group

Organisation Project team Lucinda Brogden, (Chair) National Mental Health Commission – Program Patron Carers NSW Beyond Blue Centre for Rural and Remote Mental Health NSW Mental Health Commission Sydney University Way Ahead Mental Health Australia Mental Health Carers NSW Carer advocates, Lived experience

• Prof. Frances Kay-Lambkin
• Dr. Gavin Hazel
• Dr. Sally Fitzpatrick
• Dr. Katie McGill
• Dr. Zoi Triandafilidis

Ms Kim McNaughton Ms Elloyse Saw (PhD)

Minds Together

Stage 1 Literature review Stage 2 Consultation Stage 3 Program development Stage 4 Pilot study Stage 5 RCT + Economic evaluation GOAL: to improve the mental health and wellbeing of people who provide support and care for adults experiencing symptoms of depression and/or anxiety. OUTCOME: Availability of an online evidence-based program (+ social support)

Systematic scoping study

• Effective or cost-effective interventions to support

adult carers (16+ years) of adult people (16+ years) experiencing depression and/or anxiety.

• Searched for both qualitative and quantitative

studies. After removing duplicates, screening, and assessing Studies included = 22

Stage 1: Literature review

Literature review findings

Many studies targeted carers of people with ‘severe mental illness’ or dementia

• Few studies targeted carers of people with depression, and none of the studies targeted carers of

people with anxiety. Limited evidence-based interventions for carers

• Small sample sizes; few used control groups; measures varied across studies.

Programs rarely took into account variations in the care-giving context

• One-size-fits-all; people new to the carer experience or at different points in the care-giving

journey. Most programs were delivered face-to-face

• Programs such as Partners in Depression (PiD) have shown efficacy for carers of people with

depressive symptoms.

Translation of PiD to Online

• Translate learnings from PiD to an online environment

that provides: easy access whenever the carer has time; consistency in program delivery; reduction of stigma; cost-effective.

• Extend program to include anxiety symptoms.
• Embed social support component.

Survey: n=123

• 40% completion rate, 49.5% partially completed
• 75% female (50-69 years of age); 25% male (40-49 years of age)
• 19% selected a telephone interview

82% born in Australia

• 2.3% Aboriginal, 17.4% identified with other cultural heritage

Relationship status

• 65% Married or de facto; 13% Separated/divorced;

10% in a relationship but not living together Note: K10 scoring based on Kessler et al., (2003) not ABS (2017) National Health Survey or Survey of Disability, Aging and Carers (SDAC) scoring.

Stage 2: Consultation with carers

Hunter New England Human Research Ethics Committee: 2018/ETH00444

Care recipients

• 42% spouse; 23% child; 21% relative; 12% friend
• 60% male; 27% between 50 and 59 years of age
• 84% born in Australia
• 5.5% Aboriginal; 21% identified with other cultural heritage
• 84% had a formal diagnosis
• 86% experienced depression/anxiety on more than one
• ccasion
• 91% receiving treatment from a professional

Consultation with carers: Survey cont…

Themes: Co-morbidity was common (other mental disorders, physical disorders, trauma, drug & alcohol abuse, suicidal ideation/attempts). Carers seek improvements in the provision of services, treatments, and supportive workplaces. Carers want recognition as part of the care team; access to group counselling and not just medication; help that is accessible, reliable and consistent. Peer-to-peer support featured strongly. Carers want to connect with other carers for ideas, strategies and support. Barriers included costs, time, proximity, additional responsibilities, lack of faith in services/professionals.

Interview n=20

• 25% male, 75% female
• All participants were born in Australia
• Majority lived with the recipient of care
• All care recipients had symptoms of depression and/or
• anxiety. Some had a formal diagnoses of both.

Consultation with carers: Interviews Questions:

Time spent caring Best form of support so far in your caring journey Do we need a program specifically to support mental health carers? Why? Best key advice to offer other mental health carers

Time spent caring

• Several carers had full-time caring roles
• Carers provided between 3 to 40+ hours of care per week
• In terms of duration as a carer, range: 8 months to 10 years.

Best form of support so far in your caring journey

• All but one carer had received a range of professional

support from services such as NDIS, psychologist, GP, Blue Care workers, nursing home. Information support came via family and friends.

Consultation with carers: Interviews

Time spent “It is pretty constant. Even when I am not physically there I am usually organising something or on the phone trying to get things done. It really doesn’t end in terms of hours. The only time I really have time off is when I am asleep”. Participant, female Best support Definitely that [carer] Facebook group. From the moment I found it, it has been very eye-

• pening. I think a lot of carers feel very alone and to

have all these people that have the exact same issues and problems, worries that you do is really affirming”. Participant, female

Do we need a program specifically to support mental health carers? Why?

• All carers agreed that a program to support their own

mental health and wellbeing was needed

• All but one carer said an online program would be a useful

way to engage with a support program Best key advice to offer other mental health carers

Consultation with carers: Interviews

Need for a program? “Definitely, it is so vital and it needs to be specific… with mental health it is a very different experience”. Participant, female Why? “Both for my own mental health and his, so that I can better support him and know what the wrong things to say are or know when he is sort of shutting down, how or what is the best approach in that situation to help him. Instead I often feel like I make it worse”. Participant, female Best key advice to offer “My advice to myself, is look after me and look after him, and everyone else can go to hell in a hand basket” Participant, female

Carer Insights project $10,000 to implement the Lived Experience Framework

• used to develop a series of video and podcast materials to

provide a richer understanding of the stories of carers For carers by carers: video example 5 carers (4 females, 1 male)

NSW Mental Health Commission: Lived Experience Framework grant

~ VIDEO DEMONSTRATION ~

4 CORE MODULES: 1 – Engagement: psychoeducation 2 – Problem exploration: the caring relationship, self-care 3 – Values: problem identification and problem solving 4 – Skill Building: CBT and ACT approaches Lived experience:

• Case studies developed from consultation and literature
• Videos and podcasts of carer stories embedded in program

+ Social support portal (moderated)

Program development

We aim to test:

• Effectiveness of processes - recruitment, randomization, etc;
• Adherence - commencement, retention, and completion;
• Usability – online program and questionnaires, ease of use, content, etc;
• Outcome measures – suitability – depression, anxiety, well-being and quality of life measures.

Pilot study

Hypotheses: Participation in the online program (with social support) will produce significantly increased wellbeing and quality of life scores and decreased psychological distress compared to the control group.

Random Controlled Trial - 2020

Aggar C. Implications of caregiving. JARNA. 2016a;19(2):15-24. Aggar C. Determinants of the caregiving experience. JARNA. 2016b;19(3):6-13. Australian Bureau of Statistics. National Survey of Mental Health and Wellbeing: Summary of results, 2007. Canberra (AU): Commonwealth of Australia. 2008. 100 p. Cat. No.: 4326.0. Available from: http://www.ausstats.abs.gov.au/ausstats/subscriber.nsf/0/6AE6DA447F985FC2CA2574EA00122BD6/$File/National%20Survey%20of%20Mental%20Heal th%20and%20Wellbeing%20Summary%20of%20Results.pdf Australian Bureau of Statistics. National Health Survey: Users’ Guide, 2014-15. Canberra (AU): Commonwealth of Australia. 2017. Cat. No.: 4363.0. Available from: https://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/4363.0~2014- 15~Main%20Features~Kessler%20Psychological%20Distress%20Scale-10%20(K10)~35 Australian Government. Carer Recognition Act 2010. No. 123, 2010. Canberra (AU): Federal Register of Legislation. 2010. Available from: https://www.legislation.gov.au/Details/C2010A00123 Australian Institute of Health and Welfare. Australia’s health 2016. Australian’s health series no. 15. 2016. Canberra (AU): AIHW. 2016. Cat. No.: AUS 199. Available from: https://www.aihw.gov.au/getmedia/b240766b-7246-4069-a38a-c4e862a47059/ah16-3-1-burden-of-disease-injury-australia.pdf.aspx Broady TR, Stone K. “How can I take a break?” Coping strategies and support needs of mental health caregivers. Social Work in Mental Health. 2015;13(4):319-

• 35. doi: 10.1080/15332985.2014.955941

References

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Butterworth P, Pymont C, Rodgers B, Windsor TD, Anstey KJ. Factors that explain the poorer mental health of caregivers: results from a community survey

• f older Australians. The Royal Australian and New Zealand College of Psychiatrists. 2010;44:616-24.

Diminic S, Hielscher E, Lee YY, Harris M, Schess K, Kealton J, Whiteford H. The economic value of informal mental health caring in Australia: summary

• report. 2017. Brisbane (QLD): The University of Queensland.

Kessler RC, Barker PR, Colpe LJ, Epstein JF, Gfroerer JC, Hiripi E, et al. Screening for serious mental illness in the general population. Arch Gen Psychiatry. 2003 Feb;60(2):184-9. Available from: https://www.worksafe.qld.gov.au/__data/assets/pdf_file/0009/76770/kessler-psychological-distress-scale- k101.pdf Pirkis J, Burgess P, Hardy J, Harris M, Slade T, Johnston A. Who cares? A profile of people who care for relatives with a mental illness. Australian and New Zealand Journal of Psychiatry. 2010;44:929-37. Torres A, Blanco V, Vazquez FL, Diaz O, Otero P, Hermida E. Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research. 2015;226:333-39. doi: Available from: http://dx.doi.org/10.1016/j.psychres.2014.12.066 Whiteford HA, Buckingham WJ, Harris MG, Burgess PM, Pirkis JE, Barendregt JJ, Hall WD. Estimating treatment rates for mental disorders in Australia. 2014;38:1:80-85.

References

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Read more: The Conversation

Questions?

Dr Sally Fitzpatrick E Sally.Fitzpatrick@health.nsw.gov.au everymind.org.au | @everymindAU