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

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

3. 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) “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. 4 Conceptions of Support Tangible Tangible  Aid  Assistance Emotional Emotional  Affirmation  Affection Informational Informational  Promotes problem solving and information Integration in a Network Integration in a Network  Size  Duration  Membership

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

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

7. 7 How does support change with MS? Relationship Deterioration Relationship Deterioration QuestionPercent Endorsed  I worry I am not a good mate 45%  My spouse/significant other babies me44% Benefit Finding Benefit Finding QuestionPercent Endorsed  MS has helped me be closer to my family71%  I am more compassionate towards others65% (Mohr et al., 1999) (Mohr et al., 1999)

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

9. 9 Individuals with MS endorse less social support over time “Variety, amount, and quality of social contacts are all diminished by MS.” “Variety, amount, and quality of social contacts are all diminished by MS.” (Mohr, 1999) Possible Reasons: 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 Married individuals report more support throughout the course of illness

10. 10 Social Support and Psychosocial Adaptation Supportiveness Un-supportiveness Functional Disability Perceived Uncertainty Depression.27.37.24 (Wineman, 1990).24 Social Network List and Support System Scale: Socialization, tangible assistance, advice and guidance, social reinforcement, emotional sustenance (Fiore, Becker, & Coppel, 1983)

11. 11 Social Support and Psychosocial Adaptation Supportiveness Un-supportiveness Functional Disability Perceived Uncertainty Purpose in Life.27 -.27.23 -.22 (Wineman, 1990) Social Network List and Support System Scale: Socialization, tangible assistance, advice and guidance, social reinforcement, emotional sustenance (Fiore, Becker, & Coppel, 1983)

12. 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) Family and friend based (Heller, Amaral, & Procidano, 1978) ( McIvor, Riklan, & Reznikoff, 1984)

13. 13 Social Support and Depression DepressedNot Depressed DepressedNot Depressed SSSI Score-1.53.0 SSSI Score-1.53.0 SSSI = Social Stress and Support Interview (occupation, money, housing, social life, marriage, family) SSSI = Social Stress and Support Interview (occupation, money, housing, social life, marriage, family) Range = -6 (no support/stress) to 6 (support in all areas) Range = -6 (no support/stress) to 6 (support in all areas) Depressed vs. not by structured clinical interview Depressed vs. not by structured clinical interview (Gilchrist & Creed, 1994)

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

15. 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. 16 Sample 451 veterans (44%) who returned surveys 451 veterans (44%) who returned surveys 86% male 86% male mean age of 55 mean age of 55 62% married, 23% divorced, 8% single, 5% separated, 2% were widowed 62% married, 23% divorced, 8% single, 5% separated, 2% were widowed 93% Caucasian, 5% Native American, 2% African American 93% Caucasian, 5% Native American, 2% African American

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

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

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

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

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

22. 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. 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. 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. 25 Support associated with marriage differs by gender F(1,405) = 10.75, p<.001

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

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