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
Acknowledgment of Country 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.
Prevalence of mental ill-health Mental and substance use disorders are the second largest contributor of 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).
Experiences of mental health carers • 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 ongoing 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). Page 5
Minds Together 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 Prof. Frances Kay-Lambkin Carers NSW Dr. Gavin Hazel Beyond Blue Dr. Sally Fitzpatrick Centre for Rural and Remote Mental Health Dr. Katie McGill NSW Mental Health Commission Dr. Zoi Triandafilidis Sydney University Ms Kim McNaughton Way Ahead Ms Elloyse Saw (PhD) Mental Health Australia Mental Health Carers NSW Carer advocates, Lived experience
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) Stage 1 Stage 3 Stage 2 Stage 4 Stage 5 Literature Program Consultation Pilot study RCT + Economic evaluation review development
Stage 1: Literature review 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
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.
Stage 2: Consultation with carers 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. Hunter New England Human Research Ethics Committee: 2018/ETH00444
Themes: Consultation with carers: Survey cont … Co-morbidity was common (other mental disorders, physical disorders, trauma, Care recipients drug & alcohol abuse, suicidal ideation/attempts). • 42% spouse; 23% child; 21% relative; 12% friend Carers seek improvements in the provision of • 60% male; 27% between 50 and 59 years of age services, treatments, and supportive workplaces. • 84% born in Australia Carers want recognition as part of the care team; access to group counselling and not just medication; • 5.5% Aboriginal; 21% identified with other cultural heritage help that is accessible, reliable and consistent. • 84% had a formal diagnosis Peer-to-peer support featured strongly. • 86% experienced depression/anxiety on more than one Carers want to connect with other carers for ideas, occasion strategies and support. • 91% receiving treatment from a professional Barriers included costs, time, proximity, additional responsibilities, lack of faith in services/professionals.
Consultation with carers: Interviews Questions: Interview n=20 • 25% male, 75% female Time spent caring • All participants were born in Australia Best form of support so far in your caring journey • Majority lived with the recipient of care • All care recipients had symptoms of depression and/or Do we need a program specifically to support mental health carers? Why? anxiety. Some had a formal diagnoses of both. Best key advice to offer other mental health carers
Consultation with carers: Interviews Time spent Time spent caring “It is pretty constant. Even when I am not physically • Several carers had full-time caring roles there I am usually organising something or on the phone trying to get things done. It really doesn’t end • Carers provided between 3 to 40+ hours of care per week in terms of hours. The only time I really have time off is when I am asleep ”. • In terms of duration as a carer, range: 8 months to 10 years. Participant, female Best form of support so far in your caring journey Best support Definitely that [carer] Facebook group. • All but one carer had received a range of professional From the moment I found it, it has been very eye- support from services such as NDIS, psychologist, GP, Blue opening. I think a lot of carers feel very alone and to Care workers, nursing home. Information support came via have all these people that have the exact same issues family and friends. and problems, worries that you do is really affirming ”. Participant, female
Need for a program? Consultation with carers: Interviews “Definitely, it is so vital and it needs to be specific … with mental health it is a very different experience ”. Do we need a program specifically to support mental health Participant, female carers? Why? Why? • All carers agreed that a program to support their own mental health and wellbeing was needed “Both for my own mental health and his , so that I can better support him and know what the • All but one carer said an online program would be a useful wrong things to say are or know when he is sort of way to engage with a support program shutting down, how or what is the best approach in that situation to help him. Instead I often feel like I make it worse”. Best key advice to offer other mental health carers 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
NSW Mental Health Commission: Lived Experience Framework grant Carer Insights project $10,000 to implement the Lived Experience Framework ~ VIDEO DEMONSTRATION ~ - 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)
Program development 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)
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