Taking the bite out of carers’ “black dog”

1. Taking the bite out of carers’ “black dog” Emma Cother - Projects Coordinator Population Health Congress, Adelaide, September 2012 Additional authors: Katie McGill, Dr Deanna Pagnini, Tania Ewin, Elena Terol, Celia Rae, Gemma Edgar and Todd Heard

2. Scope of Presentation Partners in Depression – a program designed to take the bite out of carers’ black dog • What is it? • How has it been disseminated across Australia? • What impact has it had?

3. What is Partners in Depression? • Psycho-educational program for those who love, live with or care for a person experiencing depression • Based on adult learning principles • Six-session program run by two facilitators in community settings • Dual focus - 1st hour looks at issues for the person with depression & 2nd hour focuses on the carer • Sessions include structured activities and discussion as well as self-reflective practice for at home • Evidence-based • Culturally sensitive but not culturally specific • Guided by principles of self care

4. The Program What is depression      Treatment options for depression The caring and support experience – grief, stigma, carer life course framework Introduction to CBT Suicidally, self-harm & communication strategies         Help-seeking and self-care

5. Rationale Research has shown that people who love, care for or support a person with depression… • Are at risk of developing mental health problems themselves(Jeglic et al., 2005) • Have higher levels of psychological distress than the general population(Kim & Salyers, 2008; Jeglic et al., 2005) • Value opportunities to connect with others in a similar situation(Highet et al., 2004) • Are interested in learning and strengthening coping and self-care strategies(Muscroft & Bowl, 2000)

6. Families and carers provide assistance and support to the person with mental illness, and indeed for mental health services would otherwise be overwhelmed(Hayman, 2005) Carers/families have a right to: Be respected for their role and experiences Receive appropriate information and advice Have their views and needs taken into account (Mental Health Act 2009) Carers are often the forgotten allies in the battle against depression Prior to Partners in Depression, few services existed to specifically address the needs of carers of people with depression 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) Rationale

7. Pilot Phase • 2007 – 2008 in Hunter New England region • Co-funded by beyondblue: the national depression initiative • Consultation and scoping phase: • literature review • focus groups • reference group • Implementation phase: • Train the trainer model • Pre and post program data collected from participants • Training data collected from facilitators

8. Pilot Evaluation • At baseline, participants had higher levels of depression, anxiety and stress (as measured by the DASS) than the general population = levels reduced by a statistically significant amount after attending the program • Participants’ psychological distress scores (as measured by the K10) significantly reduced from baseline to post program • Group format considered one of the most important features • Participant outcomes were equivalent regardless of whether the program was delivered by HIMH facilitators or externally trained facilitators

9. National Dissemination • Grant from nib foundation = August 2009 to April 2012 • 3 phases – stakeholder engagement (reference group, external evaluator, patron, state based decision makers) training and program support • Community capacity building model – 400 health and community professionals from metropolitan, regional and rural areas recruited to become facilitators • Successful applicants attended free 2-day facilitator training course in various locations around Australia delivered by project team • Facilitators committed to delivering the program at least 3 times in their local community in a 12 month period = accreditation • Provided with all participant resources and a range of clinical and administrative support at no charge • Not paid by project team to deliver the program – required to have management support to deliver as part of their ‘core business’ Facilitator Manual

10. Evaluation • Quantitative and qualitative data • Data collection March 2010 – April 2012 • External evaluator • Participant data sources: • Baseline questionnaire (N=1220) • 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) • Facilitator data sources: • Program fidelity checklists after each group • Post-program feedback questionnaires (N=105) • Focus groups (2 groups, 11 participants)

11. Participants • Over 1200 Australians attended the program during national dissemination • 80% of participants were women • Average age = 53 • 75% born in Australia • Many rarely disclosed they are caring for someone with depression • 64% of the people with depression also had co-morbid physical or mental health problems

12. Baseline K10

13. Key Areas of Improvement • Quantitative data show that participants made improvements in important areas: • Knowledge • Awareness of impact of depression • Improved communication skills • Self-care and coping techniques • Encouragement for help-seeking behaviours “It was like a valve being opened on the pressure cooker (us!). It gave me a frame of reference which was proven and reliable. It helped me to remain calm more often and to identify depressive behaviours, and to not blame myself” “It has given me an understanding of depression, not to blame but accept that this is how things are and to try to be positive when dealing with issues” • Echoed in qualitative findings: • They are not alone in their experiences • The importance of self-care • To ask for help when they need it for themselves • Effective communication skills • To step back/set boundaries • To maintain hope “It is more relaxing relating to them because I know I can only support them, not make them better” “Meeting others in the same situation as myself - this has been the best thing for me from the program”

14. Key Applications of Learnings • The majority of group participants were able to apply what they learned: • At program’s end = 84% • 6 month follow-up = 83% • Applications included: • Changing the waythey communicated/reacted to situations • Taking time for themselves • Encouraging discussions about potential changes in treatment • Disclosing their experience with depression to others “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” “Reflective listening. I used this technique to calm our son instead of inflaming the situation.” “I'm more direct and upfront about where my boundaries are”

15. Key Impacts on Relationship • The majority of group participants felt the program had an impact on their relationship with the person with depression: • At program’s end = 82% • 6 month follow-up = 80% • Kinds of impact: • More understanding of the other’s perspective • Appreciation of carer doing the course • More patience • More positive encouragement • In some cases the carer disengaged from the person with depression “I was really fortunate that my husband was 'really pleased and impressed' that I was able to attend the program - he thanked me for trying to learn more to support him” “I am listening to them again. I feel I had switched off and that wasn't doing our relationship any good”

16. Reduction in Psychological Distress

17. Overall Satisfaction and Recommendation • 86% were very or extremely satisfied with the program as a whole • 98% of participants would recommend it to others • The <1% who were extremely or somewhat unsatisfied felt it was too rushed or too basic • Nearly 2/3 of participants in the six month follow up have recommendedPartners in Depression to others • 50% of those at the six month follow-up have had some contact with either other group members or facilitators (35% other group members; 21% facilitators) • Would like program to be more widely available, and promoted more extensively • Some suggested improvements: • Generally would like the program and session times to be longer with more time for sharing • Additional suggested topics such as youth specific version, anxiety specific version, how to handle aggressive behaviour etc..

18. Other Items of Note The material and the group setting can be confronting It took a lot of courage on the part of some group members to “cross the threshold” into the room Many group members had never discussed their experiences before and it took a while to develop trust Talking in a group setting was a new experience, particularly for some male group members Some topics could raise painful issues: e.g.. grief and loss, suicide

19. Key Wins • Consistent feedback about high quality of training course • Consistent feedback about high quality of participant resources • High level range of people being trained as facilitators, from diverse backgrounds • Innovation of facilitators in delivering the program to vulnerable populations • Organisations are taking the delivery of the Partners in Depression program as an opportunity to partner across organisations • Many participants continue to meet up and provide support to one another once their group has ‘finished’ • Statistically significant decrease in psychological distress experienced by participants who attend the program • beyondbluefunding to turn ‘practice into publications’

20. Where to Next? – Consolidate and Enhance Initiative • Piloting a ‘Facilitator Peer Training’ model • Implementing a ‘Carer Participation Strategy’ • PID Peers • Ambassador Program • Implementing a ‘Broker’ Strategy’ to enable delivery of program within major organisations or relevant settings such as EAP

21. How Can You Get Involved? • Register your interest in beingtrained as facilitator= send an email topid@hnehealth.nsw.gov.au • Refer peoplewho love, live with or care for someone with depression to the program • Register your interest in beingkept up to datewith progress on the initiative and associated research

22. Thank you www.partnersindepression.com.au pid@hnehealth.nsw.gov.au “ Partners in Depression was really useful and even 12 months later, it continues to help. Last week, my daughter mentioned something and I said to myself “Hang on! I recognise this! This is her depression talking.” Before Partners in Depression, I wouldn’t have recognised this, nor would I have had the confidence to deal with it”