Organizing and Leading Telephone Support Groups

1. Organizing and Leading Telephone Support Groups Ronald W. Toseland Director Institute of Gerontology University at Albany State University of New York 12222 Tel: 518:442-5353; E-mail: toseland@albany.edu

2. Background • Based on a stress, appraisal, and coping model • Components: support, education, coping skills, problem solving • A menu of choices

3. Studies – Face-to-Face • NIMH grant for adult children – comparing peer and professionally led groups • 8 weekly face-to-face group meetings • VA grant – spouse caregivers also impact on veterans • 8 weekly face-to-face group meetings and 10 monthly follow-up meetings • AHCQR grant – face-to-face groups in an HMO for spouses • 8 weekly group meetings and 10 follow-up meetings

4. Studies - Telephone • AOA telephone grant – comparing adult children and spouses • 12 weekly meetings 75 minutes • VA Grant – telephone groups for spouses of veterans with dementia • 10 weekly meetings 60 minutes • Hard to keep to 60 minutes

5. Findings • Support groups effective for adult children • Professionally-led groups a little more effective • VA spouse caregivers and AHCQR • Added monthly follow-up but - • Groups not as effective for spouses • In general, easier to recruit adult children than spouses • In VA found groups reduced health care costs for care recipients in poor health

6. Findings (continued) • AOA grant • Groups effective for adult children • Reduced feelings of burden, symptoms of depression, pressing problems • Increased social support and knowledge of community services • Less effective for spouses • Current VA telephone grant for spouse of those with dementia • Findings not complete – spouses say they made changes • Fewer changes on standardized measures • Will look at psychosocial and cost outcomes • Selected findings in the Reference List

7. Telephone groups – positive aspects • Reach out to rural, isolated • Homebound – care recipient or lack transportation • Physically disabled • Low-income • Discomfort in face-to-face

8. Telephone groups – positive aspects (continued) • Fits adult children’s schedules • Greater anonymity • Reduce stigma and increased confidentiality • Greater diversity of membership • Deeper and more focused self-disclosure • Visually impaired

9. Telephone groups – negative aspects • More difficult to gauge emotional reactions • More difficult to gauge if meeting members’ needs • Technical problems – background noises, call waiting, disruptions/distractions • Can’t use certain visual cues – unless send them • Hearing impaired

10. Marketing/Recruiting • Mass marketing - 50% • Advertisements • Appearance at events • Feature Newspaper stories • Radio/TV • Newsletter • Flyers/Posting • Referrals from other agencies 25% • Direct contact initiated by caregivers – 25% • Website • 800 number

11. Things to think about before telephone meetings • Setting up time ahead of time? • Length of time for the meeting • Number of meetings – Short-term vs. ongoing • Spacing of meetings – weekly? • Open or closed membership • Time for meetings – how will care recipient be occupied?

12. Type of caregiver • Type of caregiver - spouses, adult children, others • Mixing caregivers of those with and without dementia

13. Telephone technology • Type of telephone device – land lines and cordless are best; cell phone usually okay but can be sound quality issues and more dropped calls also can pick up sounds when trying to muffle them; Headsets may not be as good – depends on quality • Dial in or dial out • Dial-in problems • Members forget • Timeliness • Unclear when someone leaves call • Dial-out problems • Members have to wait • We prefer dial-out • Separate telephone line for stragglers?

14. Selected Telephone Conference Services • FCA technology Link Conferencing 800-287-9849 ext. 3446 (Gregg) gclarrk@linkconferencecall.com 7 cents per minute per person (ask for FCA’s rate) • AOA study Conference Depot.com 15 cents per minute per person About $72 for 60 minutes and 8 participants

15. Selected Telephone Conference Services (continued) • Skype.com – $29.95 per year • Unlimited time/calls in US • Up to 10 including the leader • Program download may need technical support • Tools – create a conference call • Headset – buy a medium or high quality with microphone $30 - $50

16. Other Issues Before Meetings • Distractions during meetings • Getting materials to participants – lack of computers • Sharing telephone numbers, e-mail addresses – before or at first meeting • Meeting in-person • Invite members to call and speak with you between meetings

17. Technology Issues • Prepare members for possible technical difficulties • Dropped calls • Call backs • Member alerts • Leaving phone call temporarily • Leaving phone call permanently

18. Facilitation To Do List • Get participant profile • Keep attendance roster/participant profile in front of you • Make notes about who is talking and who is not – can use a pie chart

19. Facilitation Tips – General • Effective telephone groups are characterized by active leaders • Those who ensure that all members are engaged and not misperceiving messages • Those who guide members through group processes that must rely only on verbal communication without visual feedback

20. During Meetings • Mention who is on call – ask them to say hi • Review previous meeting briefly • Remind members about confidentiality • Remind members to use their name each time they talk • Remind members to have workbook in front of them • Check In/Pressing issue?

21. Listen Carefully • Listen for emotions • Listen for word fragments, sighs, grunts, etc. • Illicit emotions by describing emotional reactions tentatively, asking for elaboration, linking emotional reactions

22. Be More Active • Clarify who is speaking • Ask members who are speaking to identify themselves • Ask members if they know who is speaking • Clarify messages • Check on members’ understanding • Make connections between members

23. Quiet members • Some people prefer listening • Checking In – offering opportunity • Respect silence • Doing go-rounds • Asking questions, making connections

24. Organizing Group Processes • Make connections between members • Direct and organize cross-talk • Use go-rounds • Organize order of speaking • Direct questions to appropriate members • Repeat questions

25. Listen Intently • Get feedback about members’ reactions - clarification • Pay attention to tone of voice, inflection, silences, lack of response • Don’t talk too much during educational part – keep members involved

26. Documentation • Keep notes on action plans • Who needs attention between meetings • Who is speaking • Summary of meeting

27. Review of Manuals • Telephone Education Program For Caregivers of Veterans with Dementia • Leader Manual • Participant Workbook • Leading Telephone Caregiver Support Groups: A Manual for a Model Psychoeducational Program • Telephone Support Group: Participant Workbook

28. Reference List • Hall, G. R., & Buckwalter, K. C. (1987). Progressively lowered stress threshold: A conceptual model for care of adults with Alzheimer's disease. Archives of Psychiatric Nursing, 1(6), 399-406. • Toseland, R., & McCallion, P. (1998). Maintaining communication with persons with dementia. New York: Springer Publishing Co. • Toseland, R. (1990). Long-term effectiveness of peer-led and professionally-led support groups for family caregivers. Social Service Review, 64(2), 308-327. • Toseland, R., Labrecque, M., Goebel, S. & Whitney, M. (1992). An evaluation of a group program for spouses of frail elderly veterans. The Gerontologist, 32(3), 382-390. • Peak, T., Toseland, R., & Banks, S. (1995). Impact of a spouse-caregiver support group on care recipient health care costs, Journal of Aging and Health, 7(3), 427-449. • Toseland, R., McCallion, P., Smith, T., Huck, S., Bourgeois, P., & Garstka, T. (2001). Health education groups for caregivers in an HMO. Journal of Clinical Psychology, 57(4), 551-570.

29. Reference List (continued) • Toseland, R., McCallion, P., Smith, T., & Banks, S. (2004). Supporting caregivers of frail older adults in an HMO setting. American Journal of Orthopsychiatry,74(3), 349-364. • Toseland, R. & Rizzo, V. (2004). What’s different about working with older people in groups? Journal of Gerontological Social Work, 44(1/2), 5-23. • Smith, T., Toseland, R., Rizzo, V., & Zinoman, M. (2004). Telephone caregiver support groups. Journal of Gerontological Social Work, 44(1/2), 151-172. • Toseland, R., Smith, T. (2006). The impact of a caregiver health education program on health care costs. Research on Social Work Practice, 16(1), 9-19. • Smith, T., & Toseland, R. (2006). The evaluation of a telephone caregiver support group intervention. The Gerontologist, 46(5), 620-630. • Toseland, R., Naccarato, T., & Wray, L. (In press). Telephone groups for older persons and family caregivers. Clinical Gerontologist.