1. Depression and psychological distress in family caregivers (2006-2010) Researchers: Dr Peter Hudson, Dr Di Clifton, Mr. Michael Crewdson, Professor Tom Trauer, Mr. Christopher Hall, Professor David Clarke, Ms Amanda Bolleter, Dr Cheryl Remedios Project staff: Dr Tina Thomas, Dr Cheryl Remedios, Rachel Zordan, Dr Chantal Ski, Dawn Whittal Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

2. Funded by beyondblue: the national depression initiative Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia In partnership with Caritas Christi Hospice, Mercy Palliative Care and South East Palliative Care

3. Background ‘Family centred care’ and bereavement support are hallmarks of palliative care Caregivers play a critical role in patient support and undertake complex tasks including: personal care and hygiene Medical care Financial and legal tasks Household duties Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

4. Background A substantial number of carers report physical and psychological burden during the provision of care and in bereavement. Prolonged grief (PG): grief that continues in intensity, beyond a time frame in which some form of adjustment is expected and to an extent that is significantly disruptive to a person’s life. Prior to this research there was no evidenced based approach for responding to mental health problems in carers who support a relative with advanced disease

5. Aims 1.To develop more effective assessment strategies to identify family carers at risk of developing mental health problems such as depression, anxiety & prolonged grief 2.To develop best practice guidelines for the psychosocial and bereavement support of family carers of palliative care patients Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

6. Phase 1 Method: Longitudinal study Survey at 3 points in time: Time 1: On admission to palliative care – Interview and survey (60 minutes to complete) Time 2: 6-months post-death – mail-out survey (30-40 minutes to complete) Time 3: 13 months post death – mail-out survey (30-40 minutes to complete) Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

7. Questionnaire measures Mental health (depression, anxiety, PG, demoralisation, post-traumatic stress) time 1,2,3 Carer related factors (optimism, caregiver esteem, lack of family support, impact on schedule, impact on finances, impact on health, bereavement dependency, preparedness, competence) time 1 Social support, Family functioning time 1,2,3 Mental health lifetime risk factors time 1 Demographic information time 1 Circumstances of death and service information time 2,3 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

8. Study population 992 carers eligible for the study / 841 carers not eligible 381 agreed to be involved / 611 declined 301 carers participated in the study (30% of eligible) 165 carers completed time 2 (RR=55%) 143 carers completed time 3 (RR=48% of total) 134 carers completed all three time points (RR=45%) Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

9. Carer demographics Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Caregiver characteristicsTotal (n=301) Female73.1%73.1% Mean Age56.52 Age Range21-87 Country of birth – Australia Europe/North America/NZ 63.5% 24.3% Married Single Separated / divorced Widowed 72.8% 8.6% 14.3% 3.0% Children - Yes85.0%

10. Carer demographics Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Caregiver characteristicsTotal (n=301) Full-time employment26.6%26.6% Part-time employment14.6%14.6% Not in the workforce57.5%57.5% Stopped work to be a Carer - Yes24.6% Reduced work to be a Carer - Yes11.6% Previous history of being a caregiver33.9% Caring for others as well (mostly children)35.5% No. of months caring for patient – mean18.77 (1-360)

11. Mental health history and use of support services Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Caregiver characteristicsTotal (n=301) In-patient palliative care management24% Community assistance besides PC team: None Home help Meals on wheels Private Nursing 59.1% 22.3% 4.7% 16.6% Seen a MH professional in the past 6 months27.9% Taken medication for a MH problem during the past 6 months 16.9%

12. Phase 1 - Results Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Time 1 (N=301) Time 2 (N=163) Time 3 (N=142) Grief (Pre-loss grief at time 1 and Prolonged grief at time 2 and 3) (criteria based) 14.3% (n=43) 12.9% (n=21) 11.3% (n=16) Anxiety (cut-off of 11)39.5% (n=119) 18.4% (n=30) 16.9% (n=24) Depression (cut-off of 11)19.9% (n=60) 14.1% (n=23) 12.7% (n=18) Demoralisation (cut-off of 50)9.6% (n=29) 14.7% (n=24) 16.9% (n=24) Post traumatic stress symptoms (PTSD; criteria based) Not measured 27.6% (n=45) 18.3% (n=26) Table 1. Percentages of participants reporting moderate levels of psychological distress

13. Headings MeasuresPre-loss Prolonged Grief AnxietyDepression CRA – caregiver esteem.27***.16**.13* CRA – impact on schedule.16**.30*** CRA – impact on health.12*.14*.11* Bereavement dependency.19*** Family environment Optimism-.38***-.28***-.37*** Competence CRA – lack of family support CRA – impact on finances Social support Preparedness Explained variance ( R 2 ) 31%23%33% Predictors of distress at Time 1 (Regression Beta weights & explained variance) *p<.05, ** p<.01

14. T1 Factors related to distress at Time 2 and Time 3 The following Time 1 factors were associated with higher PG/dep scores at Times 2 and 3: Living with the person, p<.001 (mean=30.14 living together, mean=22.73 not living together) Close relational bond, p<.01 (mean=29.93 for carers of spouses and mean=24.62 for carers of parents). Carers of children reported even high PG scores (mean=34.75). Younger age r=-.34, p<.05 Not completing high school, p<.05 (mean=29.65 not completed high school and mean=25.82 finished high school) Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

15. Predictors of distress at Time 2 and 3 (Hierarchical Regression Beta weights and explained variance) T2 PGT3 PGT2 ANXT3 ANXT2 DEPT3 DEP Step 1 T1 pre-loss grief.55***.51***.23* T1 anxiety.38***.46*** T1 depression.27**.31** T1 demoralisation.17*.24** Step 2 T1 esteem T1 Lack of family support.14* T1 impact on finances.13* T1 impact on schedule.16** T1 impact on health T1 Bereavement dependence.22**.12* T1 Total social support-.23** T1 Family functioning-.16*-.19** T1 Optimism-.17*-.30***-.36***-.30***-.25** T1 Preparedness T1 Competence.14* Explained variance (adjusted R 2 ) 54%61%43%50%33%38% *p<.05, ** p<.01; ***p<.001 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

16. Summary of risk factors for psychological distress in carers Key risk factors for psychological distress in carers: Distress during the provision of care Caring for a younger patient Caring for a spouse or child Living with the patient Caregiver has a lower level of education Caregiver reports the role significantly impacts on their finances, health or on their schedule Caregiver reports low levels of social support or indicates poor family functioning Caregiver shows low levels of optimism Caregiver indicates high degree of dependency on patient Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

17. Bereavement Services Time 2 – Questions about bereavement services Most participants were aware that bereavement services were available to them (n=135, 84.4%) Overall, participants reported that the grief and bereavement services were quite helpful (mean=3.95 out of a possible score of 5). Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

18. Bereavement services When asked what supports they would have liked to have received over the past 6 months, they reported: 28.8% (n=47) wanted emotional support 28.2% (n=46) wanted professional support 20.9% (n=25) wanted organisational assistance 15.3% (n=25) wanted practical assistance 12.9% (n=21) wanted spiritual guidance Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

19. Phase 1 - Limitations Low response rate (approx 30%) of recruitment – is the sample representative? High drop out rate from time 1 to time 2 & 3 – were the participants who remained involved biased (more unwell or less unwell?) Was the sample size large enough for the analyses Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

20. Recommendations Generally carers are very positive about the services they received from palliative care Research suggests that all carers be screened for psychological distress on entry to palliative care and at 6 months post loss Health professionals need to be are aware that carers may be vulnerable to psychological distress, particularly if carers present with the risk factors outlined in this study. Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

21. Phase 2: Development of guidelines - Method “Clinical guidelines for the psychosocial support of family caregivers of palliative care patients” Literature review Research group developed first draft of guidelines Reviewed by key experts, key stakeholders and consumers (focus group, interviews and written feedback) Research group developed second draft of guidelines based on the feedback Survey via email to national and international experts Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

22. Development of the guidelines - Method Survey via email to national and international experts (n=26 completed survey) Reached 80% agreement on the majority of the guidelines. Minor changes made to guidelines that received less than 80% agreement. Most participants agreed that the guidelines were important, practical, realistic, relevant and applicable to both specialist and generalist providers. Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

23. Clinical guidelines - Outcomes The guidelines were endorsed by key organisations including beyondblue, Carers Australia, Carers Victoria, Palliative Care Australia, Palliative Care Victoria, International Observatory of End of Life Care (UK) The clinical guidelines were published and officially launched by the Minister of Health and Ageing, Hon. David Davis at an Inaugural Symposium (April 2011) Premier’s Award for translating evidence into practice at the Victorian Public Health Awards in 2011 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

24. Phone+61 3 9416 0000 Fax+61 3 9416 3919 Emailcentreforpallcare@svhm.org.au Webwww.centreforpallcare.org PO Box 2900, Fitzroy VIC 3065 Australia 6 Gertrude Street, Fitzroy VIC 3065 Australia Thank you for your support and for your time today!