Social Support in Multiple Sclerosis

1. Social Support in Multiple Sclerosis Aaron Turner, Ph.D.

2. Presentation Objectives • Characterize the experience of social support in multiple sclerosis • Outline the benefits of support • Describe gender differences in support

3. What is social support? • “Information from others that one is loved and cared for, esteemed and valued, and part of a network of communication and mutual obligation” (Cobb, 1976)

4. Conceptions of Support • Tangible • Aid • Assistance • Emotional • Affirmation • Affection • Informational • Promotes problem solving and information • Integration in a Network • Size • Duration • Membership

5. Why is Social Support Important in medical settings? • Associated with reduced morbidity and mortality in community samples • Better outcomes in • Congestive heart failure • Kidney disease • Stroke • Diabetes control • Cancer • Pregnancy outcome

6. Social Networks and MS • 9 people in average social network • Family members, friends, caregivers • Average contact: • 3 daily • 4 weekly • 2 yearly (Wineman,1990)

7. How does support change with MS? • Relationship Deterioration Question Percent Endorsed • I worry I am not a good mate 45% • My spouse/significant other babies me 44% • Benefit Finding Question Percent Endorsed • MS has helped me be closer to my family 71% • I am more compassionate towards others 65% (Mohr et al., 1999)

8. Needs may change over time • Self reported perceived needs: • Newly diagnosed and younger • Psychological services • Vocational services • Longer diagnosed and older • Transportation • Home care • Attendants (Kraft et al., 1986)

9. Individuals with MS endorse less social support over time • “Variety, amount, and quality of social contacts are all diminished by MS.” (Mohr, 1999) • Possible Reasons: • Activity/participation restrictions • Social isolation • Less exposure to individuals without illness • Cognitive Impairment • Depression and anxiety • Married individuals report more support throughout the course of illness

10. Social Support and Psychosocial Adaptation Supportiveness .24 Perceived Uncertainty Un-supportiveness Depression .37 .27 Functional Disability .24 (Wineman, 1990) Social Network List and Support System Scale: Socialization, tangible assistance, advice and guidance, social reinforcement, emotional sustenance (Fiore, Becker, & Coppel, 1983)

11. Social Support and Psychosocial Adaptation Supportiveness .23 -.22 Perceived Uncertainty Un-supportiveness Purpose in Life -.27 .27 Functional Disability -.27 (Wineman, 1990) Social Network List and Support System Scale: Socialization, tangible assistance, advice and guidance, social reinforcement, emotional sustenance (Fiore, Becker, & Coppel, 1983)

12. Social support and depression Beck Depression Inventory (BDI) Perceived Social Support†r • Family Based -.60*** • Friend Based -.71*** †Perceived social support inventory: Family and friend based (Heller, Amaral, & Procidano, 1978) (McIvor, Riklan, & Reznikoff, 1984)

13. Social Support and Depression • Depressed Not Depressed • SSSI Score -1.5 3.0 • SSSI = Social Stress and Support Interview (occupation, money, housing, social life, marriage, family) • Range = -6 (no support/stress) to 6 (support in all areas) • Depressed vs. not by structured clinical interview (Gilchrist & Creed, 1994)

14. Stress buffering effects of social support (Pakenham, 1999)

15. SOCIAL SUPPORT AMONG VETERANS WITH MULTIPLE SCLEROSIS Rhonda M. Williams, Ph.D., Aaron P. Turner, Ph.D., Michael Hatzakis, MD, Serena Chu Ph.D., Arthur Rodriquez, MD, MS, James D. Bowen, M.D., Jodie Haselkorn MD, MPH

16. Sample • 451 veterans (44%) who returned surveys • 86% male • mean age of 55 • 62% married, 23% divorced, 8% single, 5% separated, 2% were widowed • 93% Caucasian, 5% Native American, 2% African American

17. Measure • Medical Outcomes Study Modified Social Support Survey (MSSS; Sherbourne & Stewart, 1991) • 18 items • Possible scores 1-100 (higher = more support)

18. 4 kinds of Social Support • Tangible (e.g., take you to doctor) • Information/Emotional (e.g., listen, give advice) • Affection (e.g., hug you) • Positive Social Interaction (e.g., do something fun with you) • Total

19. Results • Moderate levels of total social support M = 69.64 • Similar to the original validation sample M = 70.1 (individuals with chronic medical conditions) • High: tangible support, M = 71.73 • Low: emotional/informational support, M = 67.29

20. Social support and patient/disease characteristics Tangible Social Support Variable r • Age (years) .14* • Disease duration (years) .13* • Mobility .19*

21. Men report more support M (SD) = 70.9 (28.0) vs. 62.0 (26.0) F(1,445) = 5.98, p<.05

22. People living with someone report more support M (SD) = 37.0 (24.0) vs. 77.0 (23.0) F(1,417) = 41.91, p<.001

23. People with higher incomes report more support M (SD) 60.4 (31.5) vs. M (SD) = 74.9 (23.8) F(1,417) = 11.62, p<.001

24. People with relapsing course report more support M (SD) 75.8 (22.4) vs. M (SD) = 66.3 (29.9) F(1,445) = 8.02, p<.05

25. Support associated with marriage differs by gender F(1,405) = 10.75, p<.001

26. Support associated with income differs by gender F(1,405) = 6.10, p<.01

27. Summary • Disease duration and decreased mobility associated only with greater tangible support • Men report more support • People living with someone report more support • People with higher incomes report more support • People with relapsing course report more support • Men report greater support benefits from marriage • Women report greater support benefits from higher income • Williams, Turner et al., in press