G. Warner, S. Hutchinson, R. Genoe and N. Geddes,

1. Self-Management Interventions Targeted at Caregivers of Older Adults: Preliminary Results from a Scoping Review G. Warner, S. Hutchinson, R. Genoe and N. Geddes,

2. Special thanks to…. Robin Parker from Kellogg Library for assistance in conducting the database searches Funded by… Nova Scotia Health Research Foundation through a REDI team development grant Acknowledgements

3. What is known from the existing literature about the delivery and effectiveness of self-management interventions for family caregivers of older adults? Our research question

4. What self-management components were included in the identified programs? • What did these programs look like? (e.g. participants, duration, group versus individual) • How effective were the programs? • What types of self-management programs are feasible? Sub-Questions

5. Self-management programs teach individuals not only to medically manage their condition, but also to manage the psychological, social and lifestyle dimensions associated with living with the condition. (Barlow, 2002) • What is self-management for unpaid caregivers who care for a spouse/parent or friend with a debilitating condition. Background

6. Where is the unpaid caregiver?

7. Action planning, goal setting & follow-up • Caregiver self care & stress reduction • Decision support tools • Group education, coaching session • Individual education, coaching session • Information via computer or • telephone or 8. video/audio or 9. written • Peer group support • Problem solving Self Management ComponentsdeSilva (2011)

8. Must be an intervention • Must include family caregivers, either alone or as a caregiver /care receiver dyad • Participant caring for someone with an ongoing condition (or limitations due to aging) • Intervention described as a self-management/self-care/patient education /empowerment program Inclusion criteria

9. Study published prior to the year 2000 • Intervention only delivered psychotherapy or exercise • Delivered primarily as inpatient/resident program • Care recipients ≤55 Exclusion criteria

10. Databases Searched: Central, Cinahl, Medline, Embase, Cochrane from 2000 to 2012 • Located 2227 sources • 2 stages: Two individuals reviewed 1) abstracts then 2) full manuscripts • Conflicts discussed and consensus decision • Extracted information using NVivo and Excel • 32 studies met inclusion criteria Methods

11. Number of Abstracts reviewed =2227 Included/Reviewed= 130 Excluded= 2097 Included after manuscript review= 42 After cross referencing by study = 32 Excluded after manuscript review= 88 Reasons: Study Design= 31 Participants= 31 Intervention= 21 Language= 5 Reasons for Exclusion

12. Of the 32 studies examined: Study Design: • RCTs = 18 Participants: • Caregiver only = 17 • Dyads = 15 • Delivery format: • Individual/dyad = 17 • Group = 9 • Combination = 6 Findings-Description of studies

13. 29 out of the 32 interventions were disease specific Conditions: • AlzDis/Dementia = 17 • Stroke = 5 • Osteoarthritis = 2 • Heart failure=2 • Cancer = 2 • Parkinson’s Disease=1 Findings-Description of studies

14. Won Won, 2008:Powerful tools for caregiving (PTC) • Ducharme, 2011:Learning to be a caregiver • van den Heuvel,2000: Group and individual support program for caregivers of stroke patients • Johnston, 2007: Workbook intervention for stroke patients and carers • Gitlin, 2010: Advancing Caregiver Training (ACT) • Glueckauf, 2007: Telephone-based cognitive-behavioral intervention Examples of studies

15. Self-management programs are most commonly provided to only the caregiver who is caring for someone with dementia • There are some care partner/dyad interventions for persons with stroke or chronic heart failure that look interesting • The sample size for some of the studies was too small to see if the intervention is effective, many were pilots of planned RCTs Findings-Description of studies

16. All 32 interventions had an education/ coaching component • Other components included were: • Information delivered (written, telephone, computer or video) = 28 • Addressed caregiver self-care or stress reduction = 28 • Involved problem solving = 25 • Had action planning or goal setting with follow-up = 18 • Included a peer group support = 9 Findings –Self-management components

17. Not possible to conduct a meta-analysis because of clinical heterogeneity: • Diverse conditions • 161 outcome measures used, of these 42 were developed for the study • only ~50% had an RCT design Findings – Effectiveness

18. 1) Grouped individual outcome measures by general categories, three most prevalent categories were • Psycho-social • Self-care • Physical health/fitness 2) Ranked results by: • Statistically significant difference • Positive results but not statically significant • No effect Findings – Effectiveness

19. The number of studies with statistically results was not substantially difference by : • Delivery method – (in-person, telephone, computer) • Format – (group, individual, both) • Location – (home, community) • Duration of intervention – (< 6 weeks, 6-11 weeks, 12-20 weeks, >21 weeks) • Number of sessions – (< 5, 6 -10, 11-20, > 20) • Number of self management components (range 3 – 10) Findings – Effectiveness

20. Findings –Feasibility

21. Self management programs had two common objectives; • teach caregivers self-care or self-management principles and; • provide information or education tailored to caregiver concerns, usually related to the care recipients health condition Self-management programs are diverse –conditions, change they hope to effect in the participant, sometimes in conjunction with exercise, outcomes What is feasible? • one-to-one in person can be high resources • outside the home may be hard for caregivers to access • Telephone is cost efficient but may not be acceptable for caregivers • Combo of phone/in person may work the best Conclusions