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Empowerment by Participation in Online Support Groups for Patients with Arthritis, Fibromyalgia and Breast Cancer [5 Aud 1100 Van Uden Kraan]

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Gunther Eysenbach
Gunther Eysenbach

The document summarizes research on empowerment experienced by patients who participate in online support groups for arthritis, fibromyalgia, and breast cancer. It finds that participating in online support groups is associated with increased feelings of empowerment in several ways. Key empowering processes included exchanging information, finding recognition, and sharing experiences. These processes were positively correlated with empowerment outcomes like feeling better informed, more confident with doctors and treatments, and improved acceptance of their disease. Patients with breast cancer reported the highest levels of both empowering processes and outcomes.

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Van Uden-Kraan, C. et al.: Empowerment by Participation in Online Support Groups for Patients with Arthritis, Fibromyalgia and Breast Cancer ,[object Object],[object Object],[object Object]
Nelly van Uden-Kraan, Stans Drossaert, Erik Taal, Mart van de Laar & Erwin Seydel Empowerment by Participation in Online Patient Support Groups Medicine 2.0 Toronto, 2008
Support groups ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Online support groups ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
 
 
Introduction (1) ,[object Object],[object Object],[object Object],[object Object]
Introduction (2) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Introduction (3) ,[object Object],[object Object],[object Object],[object Object]
Preliminary study (1) ,[object Object],[object Object],[object Object],[object Object]
Preliminary study (2) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Preliminary study (3) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Research questions present study ,[object Object],[object Object],[object Object]
Methods (1) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Methods (2)
Methods (3) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Methods (4) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Methods (5) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Methods (6) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Results (1) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 75 18 43 79% 22% AR 82≤n≤121 75 17 44 94% 6% Total 407≤N≤528 73 28 47 96% 4% More 59≤n≤76 40 46 Mean 17 25 Minimum 58 72 Maximum 2% 1% Male Age* 98% 99% Female Sex* FM 96≤n≤117 BC 170≤n≤214
Results (1) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 75 18 43 79% 22% AR 82≤n≤121 75 17 44 94% 6% Total 407≤N≤528 73 28 47 96% 4% More 59≤n≤76 40 46 Mean 17 25 Minimum 58 72 Maximum 2% 1% Male Age* 98% 99% Female Sex* FM 96≤n≤117 BC 170≤n≤214
Results (2) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 41.7 33.2 31 0 7.6 AR 82≤n≤121 40.1 36.5 51 0 5.0 Total 407≤N≤528 38.3 29.5 51 0 6.8 More 59≤n≤76 38 15 Maximum 32.1 43.0 Physical well-being* 39.3 40.4 Mental well-being 5.0 2.9 Mean Quality of Life (SF12) 0 0 Minimum Time passed since diagnosis* FM 96≤n≤117 BC 170≤n≤214
Results (2) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 41.7 33.2 31 0 7.6 AR 82≤n≤121 40.1 36.5 51 0 5.0 Total 407≤N≤528 38.3 29.5 51 0 6.8 More 59≤n≤76 38 15 Maximum 32.1 43.0 Physical well-being* 39.3 40.4 Mental well-being 5.0 2.9 Mean Quality of Life (SF12) 0 0 Minimum Time passed since diagnosis* FM 96≤n≤117 BC 170≤n≤214
Results (2) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 41.7 33.2 31 0 7.6 AR 82≤n≤121 40.1 36.5 51 0 5.0 Total 407≤N≤528 38.3 29.5 51 0 6.8 More 59≤n≤76 38 15 Maximum 32.1 43.0 Physical well-being* 39.3 40.4 Mental well-being 5.0 2.9 Mean Quality of Life (SF12) 0 0 Minimum Time passed since diagnosis FM 96≤n≤117 BC 170≤n≤214
Results (3) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 20% 80% 9 0 2.4 AR 97≤n≤121 21% 79% 9 0 2.2 Total 420≤N≤528 20% 80% 9 0 2.9 More 61≤n≤76 9 8 Maximum 81% 78% Yes 19% 22% No, I never sent a posting 2.4 1.7 Mean Contributing postings 0 0 Minimum Number of years active* FM 95≤n≤117 BC 167≤n≤214
Results (3) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 20% 80% 9 0 2.4 AR 97≤n≤121 21% 79% 9 0 2.2 Total 420≤N≤528 20% 80% 9 0 2.9 More 61≤n≤76 9 8 Maximum 81% 78% Yes 19% 22% No, I never sent a posting 2.4 1.7 Mean Contributing postings 0 0 Minimum Number of years active* FM 95≤n≤117 BC 167≤n≤214
Results (3) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 20% 80% 9 0 2.4 AR 97≤n≤121 21% 79% 9 0 2.2 Total 420≤N≤528 20% 80% 9 0 2.9 More 61≤n≤76 9 8 Maximum 81% 78% Yes 19% 22% No, I never sent a posting 2.4 1.7 Mean Contributing postings 0 0 Minimum Number of years active* FM 95≤n≤117 BC 167≤n≤214
Results (4) ,[object Object],3% 3% 4% 3% 2% About once a month 4% 2% 8% 4% 2% Less than once a month 0% 0% 0% 0% 0% More times a month 10% 15% 8% 13% 8% About once a week 28% 24% 32% 27% 29% About once a day 25% 24% 27% 24% 26% More times a week 21% AR 97≤n≤121 30% Total 420≤N≤528 34% More 61≤n≤76 29% 34% More times a day Frequency visits FM 95≤n≤117 BC 167≤n≤214
Results (5) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 2.7 2.6 2.5 2.8 2.7 Sharing experiences 2.2 2.1 2.0 2.3 2.2 Encountering emotional support 2.8 2.7 2.6 2.9 2.9 Finding recognition* 2.2 2.2 2.2 2.2 2.2 Helping others 2.8 AR 99≤n≤116 3.0 Total 460≤N≤510 2.9 More 66≤n≤75 3.0 3.1 Exchanging information* Empowering processes FM 105≤n≤114 BC 190≤n≤205
Results (5) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 2.7 2.6 2.5 2.8 2.7 Sharing experiences 2.2 2.1 2.0 2.3 2.2 Encountering emotional support 2.8 2.7 2.6 2.9 2.9 Finding recognition* 2.2 2.2 2.2 2.2 2.2 Helping others 2.8 AR 99≤n≤116 3.0 Total 460≤N≤510 2.9 More 66≤n≤75 3.0 3.1 Exchanging information* Empowering processes FM 105≤n≤114 BC 190≤n≤205
Results (5) ,[object Object],*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002. 2.7 2.6 2.5 2.8 2.7 Sharing experiences 2.2 2.1 2.0 2.3 2.2 Encountering emotional support 2.8 2.7 2.6 2.9 2.9 Finding recognition* 2.2 2.2 2.2 2.2 2.2 Helping others 2.8 AR 99≤n≤116 3.0 Total 460≤N≤510 2.9 More 66≤n≤75 3.0 3.1 Exchanging information* Empowering processes FM 105≤n≤114 BC 190≤n≤205
Results (6) ,[object Object],3.1 3.2 2.9 3.3 3.2 Enhanced self-esteem 3.2 3.1 3.0 3.3 3.2 Increased optimism and control 3.2 3.3 3.2 3.4 3.1 Improved acceptance 3.2 3.2 3.1 3.4 3.2 Feeling more confident about the treatment 3.4 3.4 3.2 3.4 3.4 Enhanced social well-being 3.3 3.4 3.2 3.4 3.4 Feeling more confident in the relation with the physician 3.5 AR 86≤n≤90 3.7 Total 413≤N≤434 3.8 More 60≤n≤64 3.8 3.8 Being better informed Empowering outcomes FM 96≤n≤98 BC 171≤n≤182
Results (6) ,[object Object],3.1 3.2 2.9 3.3 3.2 Enhanced self-esteem 3.2 3.1 3.0 3.3 3.2 Increased optimism and control 3.2 3.3 3.2 3.4 3.1 Improved acceptance 3.2 3.2 3.1 3.4 3.2 Feeling more confident about the treatment 3.4 3.4 3.2 3.4 3.4 Enhanced social well-being 3.3 3.4 3.2 3.4 3.4 Feeling more confident in the relation with the physician 3.5 AR 86≤n≤90 3.7 Total 413≤N≤434 3.8 More 60≤n≤64 3.8 3.8 Being better informed Empowering outcomes FM 96≤n≤98 BC 171≤n≤182
Results (6) ,[object Object],3.1 3.2 2.9 3.3 3.2 Enhanced self-esteem 3.2 3.1 3.0 3.3 3.2 Increased optimism and control 3.2 3.3 3.2 3.4 3.1 Improved acceptance 3.2 3.2 3.1 3.4 3.2 Feeling more confident about the treatment 3.4 3.4 3.2 3.4 3.4 Enhanced social well-being 3.2 3.2 3.1 3.3 3.2 Feeling more confident in the relation with the physician 3.5 AR 86≤n≤90 3.7 Total 413≤N≤434 3.8 More 60≤n≤64 3.8 3.8 Being better informed Empowering outcomes FM 96≤n≤98 BC 171≤n≤182
Results (7) ,[object Object],*p<.01 .28* .30* .30* .21* .31* .35* .43* Exchanging information .51* .38* .35* .27* .34* .32* .35* Encountering emotional support .31* .28* .34* .26* .34* .39* .42* Finding recognition .37* .31* .30* .24* .28* .25* .25* Helping others Sharing experiences .30* Increased optimism control (n=421) .33* Enhanced self-esteem (n=413) .25* Improved accep-tance (n=422) .48* Enhanced social well-being (n=411) .28* More confident treatment (n=422) .27* .26* More confident physician (n=427) Being better informed (n=427)
Results (8) ,[object Object],*p<.01, **p<.001 n.s. n.s. n.s. -.20** n.s. -19** -13* Education n.s. n.s. n.s. n.s. n.s. n.s. -.15* Time since diagnosis R ²=.03 R ²=.02 R ²=.03 R ²=.07** R ²=.02 R ²=.07* R ²=.08** n.s. n.s. n.s. n.s. n.s. n.s n.s. Age n.s. n.s. n.s. n.s. n.s. n.s n.s. Sex Enhanced social well-being (n=371) Increased optimism control (n=373) Improved accep-tance (n=381) Enhanced self-esteem (n=371) More confident treatment (n=382) More confident physician (n=387) Being better informed (n=394)
Results (9) Extent to which outcomes can be predicted by the processes (Step 2) *p<.01, **p<.001 .19* n.s. n.s. n.s. n.s. n.s. n.s. Sharing experiences n.s. n.s. n.s. n.s. n.s. .16* .25** Exchanging information .30** .21* n.s. .19* n.s. n.s. .22** Encountering emotional support n.s. n.s. .18* .20* n.s. .24** .23** Finding recognition n.s. n.s. n.s. n.s. n.s. n.s. n.s. Helping others R ²=.20** Optimism control (n=421) R ²=.19** Self-esteem (n=413) R ²=.13** Accep-tance (n=422) R ²=.30** Social well-being (n=411) R ²=.23** Confident treatment (n=422) R ²=.25** R ²=.31** Confident physician (n=427) Better informed (n=427)
Results (9) Extent to which outcomes can be predicted by the processes (Step 2) *p<.01, **p<.001 .19* n.s. n.s. n.s. n.s. n.s. n.s. Sharing experiences n.s. n.s. n.s. n.s. n.s. .15* .25** Exchanging information .30** .21* m.s. .19* n.s. n.s. .22** Encountering emotional support n.s. n.s. .18* .20* n.s. .24** .23** Finding recognition n.s. n.s. n.s. n.s. n.s. n.s. n.s. Helping others R ²=.20** Optimism control (n=421) R ²=.19** Self-esteem (n=413) R ²=.13** Accep-tance (n=422) R ²=.30** Social well-being (n=411) R ²=.23** Confident treatment (n=422) R ²=.23** R ²=.31** Confident physician (n=427) Better informed (n=427)
Conclusion (1) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Conclusion (2) ,[object Object],[object Object],[object Object],[object Object],[object Object]
Conclusion (3) ,[object Object],[object Object],[object Object]
Limitations ,[object Object],[object Object],[object Object],[object Object],[object Object]
Financers ,[object Object]

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Empowerment by Participation in Online Support Groups for Patients with Arthritis, Fibromyalgia and Breast Cancer [5 Aud 1100 Van Uden Kraan]

  • 1.
  • 2. Nelly van Uden-Kraan, Stans Drossaert, Erik Taal, Mart van de Laar & Erwin Seydel Empowerment by Participation in Online Patient Support Groups Medicine 2.0 Toronto, 2008
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  • 36.
  • 37. Results (9) Extent to which outcomes can be predicted by the processes (Step 2) *p<.01, **p<.001 .19* n.s. n.s. n.s. n.s. n.s. n.s. Sharing experiences n.s. n.s. n.s. n.s. n.s. .16* .25** Exchanging information .30** .21* n.s. .19* n.s. n.s. .22** Encountering emotional support n.s. n.s. .18* .20* n.s. .24** .23** Finding recognition n.s. n.s. n.s. n.s. n.s. n.s. n.s. Helping others R ²=.20** Optimism control (n=421) R ²=.19** Self-esteem (n=413) R ²=.13** Accep-tance (n=422) R ²=.30** Social well-being (n=411) R ²=.23** Confident treatment (n=422) R ²=.25** R ²=.31** Confident physician (n=427) Better informed (n=427)
  • 38. Results (9) Extent to which outcomes can be predicted by the processes (Step 2) *p<.01, **p<.001 .19* n.s. n.s. n.s. n.s. n.s. n.s. Sharing experiences n.s. n.s. n.s. n.s. n.s. .15* .25** Exchanging information .30** .21* m.s. .19* n.s. n.s. .22** Encountering emotional support n.s. n.s. .18* .20* n.s. .24** .23** Finding recognition n.s. n.s. n.s. n.s. n.s. n.s. n.s. Helping others R ²=.20** Optimism control (n=421) R ²=.19** Self-esteem (n=413) R ²=.13** Accep-tance (n=422) R ²=.30** Social well-being (n=411) R ²=.23** Confident treatment (n=422) R ²=.23** R ²=.31** Confident physician (n=427) Better informed (n=427)
  • 39.
  • 40.
  • 41.
  • 42.
  • 43.