Van Uden-Kraan, C. et al.: Empowerment by Participation in Online Support Groups for Patients with Arthritis, Fibromyalgia and Breast Cancer This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com ) Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php

This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team

Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com )

Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php

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 Support groups People in stressful circumstances often turn to support groups Support groups can offer: Understanding and emotional support Personal experiences Social comparison “ Helper therapy” principle

Support groups

People in stressful circumstances often turn to support groups

Support groups can offer:

Understanding and emotional support

Personal experiences

Social comparison

“ Helper therapy” principle

Online support groups Increase in use of the Internet 85% of the Dutch households have an Internet connection 47% of the Dutch prefer to receive medical information by means of the Internet Types of online support groups Internet discussion groups Chats E-mail groups

Increase in use of the Internet

85% of the Dutch households have an Internet connection

47% of the Dutch prefer to receive medical information by means of the Internet

Types of online support groups

Internet discussion groups

Chats

E-mail groups

Introduction (1) New role of patient in health care process Central concept: “patient empowerment” Expectation that participation in an online support group has an empowering effect No direct evidence for the effects of participation in online support groups on patient empowerment

New role of patient in health care process

Central concept: “patient empowerment”

Expectation that participation in an online support group has an empowering effect

No direct evidence for the effects of participation in online support groups on patient empowerment

Introduction (2) Definition patient empowerment Empowerment reflects the belief in patient autonomy and the right and responsibility of patients to access health information and to make their own health related decisions (Anderson & Funnell, 2005) Empowerment is a multi-faceted concept Individual, group and community level. Enabling process as well as an outcome Empowerment dependent of context Lack of measuring instrument for patient empowerment

Definition patient empowerment

Empowerment reflects the belief in patient autonomy and the right and responsibility of patients to access health information and to make their own health related decisions (Anderson & Funnell, 2005)

Empowerment is a multi-faceted concept

Individual, group and community level.

Enabling process as well as an outcome

Empowerment dependent of context

Lack of measuring instrument for patient empowerment

Introduction (3) Studies on empowerment in the context of online support groups Limited number of studies Limited operationalisation of the concept of patient empowerment Limited sample

Studies on empowerment in the context of online support groups

Limited number of studies

Limited operationalisation of the concept of patient empowerment

Limited sample

Preliminary study (1) Qualitative preliminary study Interviews with 32 participants of online support groups Objective preliminary study To explore which empowering processes take place in online support groups and which empowering outcomes are experienced by the participants.

Qualitative preliminary study

Interviews with 32 participants of online support groups

Objective preliminary study

To explore which empowering processes take place in online support groups and which empowering outcomes are experienced by the participants.

Preliminary study (2) ‘ Empowering’ processes Exchanging information Encountering emotional support Finding recognition Sharing experiences Helping others

‘ Empowering’ processes

Exchanging information

Encountering emotional support

Finding recognition

Sharing experiences

Helping others

Preliminary study (3) ‘ Empowering’ outcomes Being better informed Feeling confident with their physician Feeling confident with their treatment Feeling confident with their social environment Improved acceptance of the disease Increased optimism and control Enhanced self esteem Enhanced social well-being

‘ Empowering’ outcomes

Being better informed

Feeling confident with their physician

Feeling confident with their treatment

Feeling confident with their social environment

Improved acceptance of the disease

Increased optimism and control

Enhanced self esteem

Enhanced social well-being

Research questions present study To what extent do patients feel empowered by their participation in online support groups and with which frequency empowering processes occur? Which processes that occur in online support groups are related to these outcomes? Are there any differences between patient groups concerning empowering processes and outcomes?

To what extent do patients feel empowered by their participation in online support groups and with which frequency empowering processes occur?

Which processes that occur in online support groups are related to these outcomes?

Are there any differences between patient groups concerning empowering processes and outcomes?

Methods (1) Criteria online support groups Public and non-public online support groups Receiving >30 postings a month Online support groups selected Breast cancer: 7 groups Fibromyalgia: 6 groups Arthritis: 6 groups

Criteria online support groups

Public and non-public online support groups

Receiving >30 postings a month

Online support groups selected

Breast cancer: 7 groups

Fibromyalgia: 6 groups

Arthritis: 6 groups

Methods (2)

Methods (3) Respondents: 593 participants 65 participants only filled in the questions concerning their background Instrument: Demographic and health characteristics Use of the support group ‘ Empowering’ processes ‘ Empowering’ outcomes

Respondents:

593 participants

65 participants only filled in the questions concerning their background

Instrument:

Demographic and health characteristics

Use of the support group

‘ Empowering’ processes

‘ Empowering’ outcomes

Methods (4) Processes (29 items): ‘ Exchanging information’ (α = .88). ‘ Encountering emotional support’ (α = .95) ‘ Finding recognition’ (α = .70) ‘ Helping others’ (α = .82) ‘ Sharing experiences’ (α = .87)

Processes (29 items):

‘ Exchanging information’ (α = .88).

‘ Encountering emotional support’ (α = .95)

‘ Finding recognition’ (α = .70)

‘ Helping others’ (α = .82)

‘ Sharing experiences’ (α = .87)

Methods (5) Outcomes (38 items): ‘ Being better informed’ (α = .85) ‘ Feeling more confident in the relationship with their doctor’ (α = .91) ‘ Improved acceptance of the disease’ (α = .90) ‘ Feeling more confident about the treatment’ (α = .89) ‘ Increased optimism and control over the future’ (α = .76) ‘ Enhanced self-esteem’ (α = .93) ‘ Enhanced social well-being’ (α = .70).

Outcomes (38 items):

‘ Being better informed’ (α = .85)

‘ Feeling more confident in the relationship with their doctor’ (α = .91)

‘ Improved acceptance of the disease’ (α = .90)

‘ Feeling more confident about the treatment’ (α = .89)

‘ Increased optimism and control over the future’ (α = .76)

‘ Enhanced self-esteem’ (α = .93)

‘ Enhanced social well-being’ (α = .70).

Methods (6) Data analysis One-way analysis of variance (ANOVA) followed by a Bonferroni post hoc test / Chi-square Differences in continuous and categorical variables between the three patient groups Pearson correlation analysis Relationships between the processes that took place within the online support groups and the outcomes experienced by the participants Hierarchical multiple regression analysis The extent to which the empowering outcomes could be predicted by the empowering processes

Data analysis

One-way analysis of variance (ANOVA) followed by a Bonferroni post hoc test / Chi-square

Differences in continuous and categorical variables between the three patient groups

Pearson correlation analysis

Relationships between the processes that took place within the online support groups and the outcomes experienced by the participants

Hierarchical multiple regression analysis

The extent to which the empowering outcomes could be predicted by the empowering processes

Results (1) Demographic characteristics *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

Demographic characteristics

Results (1) Demographic characteristics *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

Demographic characteristics

Results (2) Health characteristics *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

Health characteristics

Results (2) Health characteristics *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

Health characteristics

Results (2) Health characteristics *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

Health characteristics

Results (3) Use of the online support group *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

Use of the online support group

Results (3) Use of the online support group *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

Use of the online support group

Results (3) Use of the online support group *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

Use of the online support group

Results (4) Frequency visits online support groups 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

Frequency visits online support groups

Results (5) Mean scores for empowering processes (1-4) *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

Mean scores for empowering processes (1-4)

Results (5) Mean scores for empowering processes (1-4) *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

Mean scores for empowering processes (1-4)

Results (5) Mean scores for empowering processes (1-4) *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

Mean scores for empowering processes (1-4)

Results (6) Mean score for empowering outcomes (1-5) 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

Mean score for empowering outcomes (1-5)

Results (6) Mean score for empowering outcomes (1-5) 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

Mean score for empowering outcomes (1-5)

Results (6) Mean score for empowering outcomes (1-5) 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

Mean score for empowering outcomes (1-5)

Results (7) Relationships between the processes and the outcomes *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)

Relationships between the processes and the outcomes

Results (8) Extent to which outcomes can be predicted by the processes (Step 1) *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)

Extent to which outcomes can be predicted by the processes (Step 1)

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) ‘ Empowering’ outcomes Patients feel empowered by their participation in online support groups. Participation did not have a similar profound effect on feelings of ‘being empowered’ in all areas studied. Outcomes experienced to the strongest degree Being better informed Enhanced social well-being

‘ Empowering’ outcomes

Patients feel empowered by their participation in online support groups.

Participation did not have a similar profound effect on feelings of ‘being empowered’ in all areas studied.

Outcomes experienced to the strongest degree

Being better informed

Enhanced social well-being

Conclusion (2) ‘ Empowering’ processes Most frequent empowering process Exchanging information Prediction empowering outcomes The empowering outcomes could only be predicted in a modest way by the processes that took place in the online support groups.

‘ Empowering’ processes

Most frequent empowering process

Exchanging information

Prediction empowering outcomes

The empowering outcomes could only be predicted in a modest way by the processes that took place in the online support groups.

Conclusion (3) Differences diagnostic groups No differences found between the diagnostic groups concerning the empowering outcomes. Differences found between the patient groups concerning the frequency with which the processes took place.

Differences diagnostic groups

No differences found between the diagnostic groups concerning the empowering outcomes.

Differences found between the patient groups concerning the frequency with which the processes took place.

Limitations Sample not necessarily representative Mainly very active participants Self-reported measures Limited sample Only participants of online support groups for somatic illnesses that mainly affect women were included.

Sample not necessarily representative

Mainly very active participants

Self-reported measures

Limited sample

Only participants of online support groups for somatic illnesses that mainly affect women were included.

Financers This project is financed by:

This project is financed by: