1. Partners in Depression – Supporting those who care Presenter: Elena Terol– Senior Project Officer Additional authors: Emma Cother, Tania Ewin, Katie McGill, Deanna Pagnini, August 2012

2. What this presentation will cover What is Partners in Depression (PiD)? How has it been disseminated? What impact has it had?

3. Why was Partners in Depression developed? 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) Research has shown that people who love, care for or support a person with depression…

4. Families and carers of people with mental health problems provide assistance and support to the person they care for, and indeed for mental health services, which would otherwise be overwhelmed by the demands placed upon them (Hayman, 2005) Carers/families should be respected for their role and experience and receive appropriate information and advice, and 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 PiD few services existed to specifically address the needs of carers of people with depression

5. 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 1 st hour to look at issues for the person with depression & 2 nd hour is about the carer Sessions include structured activities and discussion as well as take-home practice strategies Evidence-based Culturally sensitive but not culturally specific

6. What do we cover? 1.What is depression 2.Treatment options for depression 3.The caring and support experience 4.Introduction to CBT 5.Suicidality, self-harm & communication strategies 6.Help-seeking and self- care

7. We Talk About….Treatments The program briefly looks at various treatments for depression, including a look at medications Explanation of the ideas behind and the process of cognitive behaviour therapy (CBT)

8. We Talk About…Caring & Support Experience Research has shown that carers of people with a mental illness often find it helpful to share their experiences of caring with people in similar situations PiD gives an opportunity to reflect on the impact that depression has had on the person with depression and on people other than the person with the diagnosis

9. We Talk About…Grief and Stigma Stigma about mental illness does not just affect the person with the illness. Support people must also manage stigma and ensure they are not isolated

10. We Talk About…Carer Life Course Framework Carers NSW has completed some research with carers of people with a mental illness As a result they have come up with a model of the caring and support role which they have called the Carer Life Course Framework This is an opportunity for participants to think about and share how this framework may relate to their experiences

11. We Talk About…Suicide & Self Harm PiD looks at this difficult issue and creates a safe place for people to think about the questions they may have about suicide and self- harm but haven’t had the opportunity to ask.

12. We Talk About…Communication The program allows time to practise using and implementing effective communication strategies –Using I statements –Saying no –Giving positive messages –Helping with decision making –Having difficult conversations “Reflective listening. I used this technique to calm our son instead of inflaming the situation.” “Thinking about HOW I communicate BEFORE speaking”

13. We Talk About…Help Seeking & Support Identify appropriate resources and agencies that could provide assistance to either the carer, or to the person with depression Identify the signs that might indicate the carer may need assistance or support

14. We Talk About…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)

15. Pilot phase 2007-2008 Co-funded by beyondblue: the national depression initiative Consisted of two phases - Consultation and Implementation

16. Pilot evaluation indicated that: At baseline, participants had higher levels of depression, anxiety and stress (as measured by the DASS) than the general population. These levels reduced significantly after attending the program Participants’ psychological distress scores (as measured by the K10) significantly reduced from baseline to post program assessment Participant outcomes were equivalent regardless of whether the program had been delivered by HIMH facilitators or the external facilitators who were trained to deliver the program

17. 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

18. Training phase 400 health and community professionals recruited Successful applicants attended free 2-day facilitator training course Facilitators committed 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

20. Evaluation Quantitative and qualitative data Data collection March 2010- May 2012 Facilitator data sources: –Program fidelity checklists after each group (800 checklists returned) –Facilitator feedback forms (N=105) –Facilitator focus groups (2 groups, 11 participants)

21. Participants 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

22. Key findings– Group members Over 1200 people attended the program 80% participants were women Average age 53 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

23. Key findings– Group members (cont) Many PiD group members come into the program with high levels of distress

24. Key findings– Group members (cont) Quantitative data show that group members made improvements in important areas: –Knowledge –Awareness of impact of depression –Improved communication skills –Self-care and coping techniques –Encouragement for help-seeking behaviours

25. Key findings– Group members (cont) Themes in qualitative data echo the quantitative findings for most important things learned: –That 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

26. Key findings– Group members (cont) The majority of group participants were able to apply what they learned (At program’s end, 84% applied what they learned; 83% at 6 month follow up) Applications included: –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

27. Key findings– Group members (cont) The majority of group participants felt that their participation had an impact on their relationship with the person with depression (82% at program’s end & 80% at the 6 month follow-up) 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

28. Key finding: Levels of psychological distress decrease significantly after participation Level of psychological distress 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% N1220872113

29. Key findings– Group members (cont) Re. content/structure: 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 recommended PiD to others

30. Key findings– Group members (cont) Group members would generally like the course/session times to be longer and more time for sharing Additional suggested topics 98% were satisfied with the delivery of the program by the facilitators Those who were unsatisfied cited the general program structure (eg. wanted more time for discussion), thought the facilitator read the slides too much, or allowed one person to dominate discussion within the group

31. Key findings– Group members (cont) 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: eg. grief and loss, suicide

32. The extent to which group members want some kind of continuation/follow-up varies 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) Group members would like the program to be more widely available, and promoted more extensively

33. Participant quotes “ 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.” “ It was incredibly helpful to know we were not alone in trying to support our loved ones. “ I think this has been the most useful information that I have ever received regarding depression and because it was small group I was able to tell my story and get feedback.”

34. How can you get involved? Register your interest in training as PiD Facilitator Refer people who love, live with or care for someone with depression to the program Register your interest in being kept up to date with progress on the program, enhancement and associated research

35. 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.” Thank you