Partners in Depression: Supporting those who care  Presenter: Tania Ewin, Senior Project Officer Additional Authors: Emma Cother, Katie McGill, Dr Deanna Pagnini, Elena Terol A mental health initiative of….Program funded by…. 1

Some facts and stats  Depression affects one million Australians every year  Estimated that up to 20% of Australians will at some stage experience depressive symptoms in their lifetime (ABS 2007; DoHA & AIHW 1999)  When a person is unwell, generally family and friends provide the majority of routine day to day emotional and practical support to those in the community.

Symposium Overview 1. What do we know supports carers of people with depression? 2. Partners in Depression: Not just a group education program 3. Does the Partners in Depression program help? 4. Success stories and lessons learned: national dissemination & local implementation 3

What do we know supports carers of people with depression?

What is “caring”?  Helping to manage the illness  Identifying symptoms  Working out symptom management strategies  Facilitate access to treatment  Providing practical or functional assistance  Taking on increased household or financial responsibilities such as housework, childcare, and paying bills  Or providing ongoing emotional support  Being available to listen  Organising mutually enjoyable activities  Letting the person know they are loved 5

“The Partners in Depression program was excellent. I didn’t realise I was a carer and I didn’t realise the impact caring was having on me until I attended the group.” 6

Review of the evidence In the research examined:  Primary interventions that have been developed : Psycho-educational group programs  No reports about the relevance or effectiveness of peer support groups, respite, other interventions providing practical support or individual counselling  High attendance in group programs, positive feedback and high satisfaction ratings suggest that carers of people with depression are interested in receiving information about depression and how to enhance their own coping skills 7

Impact of depression & the caring role  12 focus groups of partners of people with depression : there is a significant and unrelenting burden of providing support to a person with depression this burden can contribute to strain on relationships and jeopardise the mental and physical wellbeing of the carer involvement with support groups and agencies is important (Highet, McNair, Davenport & Hickie, 2004)  Data analysis from Partners in Depression has also highlighted the positive aspects of caring: A sense of purpose Strengthened connection with the person they are caring for, including improved communication Opportunity to increase knowledge (diagnosis & health system)

Subjective & Objective Burden Objective burden relates to the disruption to every day life which may include: Changes to household roles and responsibilities Changes to social & recreational activities Financial strain Subjective burden relates to the carers’ perception of their situation and their emotional response which may include:  Worry  Fear  Hyper vigilance  Frustration  Anger  Resentment 9

Variables affecting burden  Type and severity of illness  Stigma associated with diagnosis  Phase of caring  Relationship of the carer to the person with the mental illness  E.g. partner, child, parent, sibling, friend  Lack of information and skills to deal with the situation  Absence of emotional support & respite breaks  Financial support 10

Coping strategies  Coping strategies may include:  Increasing knowledge of the illness  Reassess their expectations of their loved one in light of their increased awareness  Taking care of carer’s own health  Seeking social, family and professional support  Setting boundaries to allow a loved one to take more responsibility  Carers who used a variety of physical, emotional and social strategies reported more positive outcomes 11

Partners in Depression: not just a group education program

Partners in Depression Program Specifics  6 x 2 hour weekly group education sessions for people who support a person with depression (‘carers’, ‘loved ones’, ‘partners’, family or friends)  Run by 2 health or community professionals with mental health knowledge and group work skills  For groups of between 4 and 12 participants  Aims to address the information and support needs of those who care for a person with depression.  Adult education program for people aged 16 years and over  Culturally sensitive but not culturally specific  Complete package provided

Partners in Depression Program Goals 1. To increase knowledge about the symptoms, diagnosis and treatment of depression 2. To provide information about and improve communication skills and strategies 3. To increase awareness of the impact of depression on relationships 4. To provide education about and to increase utilisation of self-care and coping strategies 5. To encourage help seeking behaviour in carers and people with depression 6. To increase awareness of and facilitate access to available support services and resources

Partners in Depression Program Content The program has a dual focus:  providing information relevant to supporting a person with depression:  what is depression  communication strategies  understanding suicide and self harm  encouraging help-seeking  promoting self-care and an opportunity to reflect on the care experience

Partners in Depression Session Overview 1. Introductions; Building Awareness 2. Insight into Caring and Support; Understanding Depression and its Treatments 3. The Caring and Support Experience 4. Introduction to Cognitive Behavioural Therapy; The Support Experience 5. Suicidality and Self Harm; Communication Strategies 6. Communication Strategies; Help seeking and Support; Planning for the Future

We talk about…  Treatments  Caring & support experience  Carer Life Course Framework  Grief & stigma  Suicide & self-harm  Communication  Help seeking & support  Self-care 17 “ I think this has been the most useful information I have ever received regarding depression & because it was a small group I was able to tell my story and get feedback.”

Self Care  Caregivers are reluctant to prioritise their own needs alongside or equal to those they care for and almost always presume that their needs do not justify intervention (Muscroft & Bowl, 2000)  Outcomes for people with depression improve when the needs of the family members for information, clinical guidance and support are met (Dixon et al. 2001)

PID Initiative resources…  Facilitator Manual and CD ROM provided  Participant Guides provided (for each participant per group)  Website with a dedicated Facilitator only area plus extensive resources  Peer teleconferences  Project Team’s assistance with problem solving  Clinical governance management and support  E.g. Summary reports sent to facilitators (eg K10 score changes, participant feedback) Facilitator Manual Participant Guides

Program Support Phase – Evaluation (a)  Independent evaluator: Dr Deanna Pagnini  Extensive range of quantitative & qualitative data  Data collection March 2010– May 2012  Facilitator data sources:  Training feedback forms (N=379)  Program fidelity checklists after each group (800 checklists returned)  Facilitator feedback forms (N = 105)  Facilitator focus groups (2 x groups, 11 participants) 20

Program Support Phase – Evaluation (b)  Participant data sources:  Group member baseline questionnaires (N=1220)  Group member post-program questionnaires (N=959)  Group member 6 month follow-up questionnaires (N=119)  Group member focus groups (3 groups, 18 participants)  Follow up phone interviews with group members (N=40)  PiD team data sources:  Project plans & changes/modifications  Interviews with key staff 21

Does the Partners in Depression program help?

Who attended the program?  Over 1200 people attended the program (during national roll-out)  80% participants were women  Average age 53 years  75% born in Australia  Many rarely disclose they are caring for someone with depression  64% of the people with depression also have additional physical or mental health problems  Metropolitan, regional, rural and remote geographical areas – from Broome to Brisbane, Alice Springs to Burnie 23

Measuring psychological distress - baseline 24

Key finding: Levels of psychological distress decrease significantly after participation Level of psychological distress (K10) BaselineProgram end 6 month follow-up Low (10-15)30.0%43.0%48.7% Medium (16-29) 57.6%50.9%43.4% High (30-50)12.4%6.1%8.0% N

Key Findings  Quantitative data show that group members made improvements in important areas:  Knowledge  Awareness of depression  Improved communication skills  Self-care and coping techniques  Encouragement for help-seeking behaviours  84% of group participants applied what they learned, including:  Changing the way they communicated/reacted to situations  Taking time for themselves  Encouraging discussions about potential changes in treatment  Disclosing their experience with depression to others 26

“It was incredibly helpful to know we were not alone in trying to support our loved ones.” “It gave me hope to continue and the ability/skills to continue and enjoy the ‘ride” (rollercoaster) and enjoy the good moments.” “I’m more direct and upfront about where my boundaries are” “Greater awareness = greater empathy = stronger relationship” “It is more relaxing relating to them because I know I can only support them, not make them better.” 27

Key findings: Participants’ feedback regarding content  86% were very or extremely satisfied with the program as a whole  The <1% who were extremely or somewhat unsatisfied felt it was too rushed or too basic  98% of participants would recommend it to others  Nearly 2/3 of participants in the six month follow up have recommended PiD to others

Interview with Liisa, a participant 29

Success stories & lessons learned: national dissemination & local implementation

In the beginning …  Local identified need?

Pilot Phase  2007 – 2008  Co-funded by beyondblue: the national depression initiative  Consisted of 2 phases:  Consultation  Implementation

National dissemination  Nib foundation grant to undertake national dissemination from Aug 2009 to April 2012  Stakeholder engagement phase (reference group, external evaluator, meetings with key stakeholders)  Training phase  Program support phase

Challenges!! 1. How do we find 400 facilitators? 2. How do we ensure the fidelity of the program? 3. How do we keep facilitators engaged when we aren’t paying them? 34

How did we find our facilitators?  Aim was to develop a relationship with organisations across Australia who:  Identified their core business was working with families and carers OR  Could articulate that working with families and carers fit within their current framework 35

Training Phase  400 health & community professionals recruited  Successful applicants attended free 2-day facilitator training course  Facilitators committee to delivering the program at least 3 times in 12 months-certification  Provided with all participant resources and a range of clinical and administrative support  Not paid by project team to deliver the program 36

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Clinical Governance  How do we ensure that groups run across the country are delivered in line with the principles of the program and in a consistent manner?  Quality Assurance process  Dedicated Senior Project Officer - Clinical Lead 38

Interview with Neil, a facilitator 39

In conclusion…  Community capacity building approach  Adding to the evidence base  Meeting a need! 40

“ Caring for someone living with depression can be frustrating. There were times I felt totally exasperated, not knowing where to turn for help or support. Programs such as Partners in Depression are vital in helping carers to be more informed in providing support for their loved one and also better prepare them to address their own needs. With this help the family can learn to live, laugh and love again,” Mrs Lucy Brodgen, Program patron Thank you 41

References Dixon, L, McFarlane, W.R., Lefley, H.M. Lucksted, A., Cohen, M., Falloon, I., et al. (2001)Evidence base practice for services to families of people with psychiatric disabilities. Psychiatric Services, 52(7) Government of South of Australia (2009) Mental Health Act Hayman, F (2005) Helping Carers Care: An Education Program for Rural Carers of People with a Mental Illness. Australasian Psychiatry, 13 (2), Highet N.J., McNair, B.G., Daverport, T.A. & Hickie, I.B. (2004) How much more can we lose?:Carer and family perspectives on living with a person with depression. Medical Journal of Australia, 181(7) Jeglic, E., Pepper, C., Ryanchenko, K., Griffith, K., Miller, A. & Johnson, M. (2005). A caregiving model of coping with a partner's depression. Family Relations. 51: Kim, H-W., & Salyers, M. P. (2008). Attitudes and perceived barriers to working with families of persons with severe mental illness: Mental health professionals’ perspectives. Community Mental Health, 44, Muscroft, J.& Bowl,R. (2000)The impact of depression on caregivers and other family members: implications for professional support. Counselling Psychology Quarterly, 13(1), Schofield, H.L., Bloch, S., Nankervis, J., Murphy, B. Singh, B.S. & Herrman, H.E. et al. (1999) Health and well-being of women family carers: A comparative study with a generic focus. Australian and New Zealand Journal of Public Health, 23(6)m