Van Uden-Kraan, C. et al.:Empowerment by Participation in Online Support Groups for Patients with Arthritis, Fibromyalgia and Breast Cancer

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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

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

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

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

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

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.

Preliminary study (2)

• ‘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

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?

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

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

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)

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).

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

Results (1)

Demographic characteristics

BC170≤n≤214

FM 96≤n≤117

AR 82≤n≤121

More 59≤n≤76

Total 407≤N≤528

Sex*

Male 1% 2% 22% 4% 6%

Female 99% 98% 79% 96% 94%

Age*

Mean 46 40 43 47 44

Minimum 25 17 18 28 17

Maximum 72 58 75 73 75*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

Results (1)

Demographic characteristics

BC170≤n≤214

FM 96≤n≤117

AR82≤n≤121

More 59≤n≤76

Total 407≤N≤528

Sex*

Male 1% 2% 22% 4% 6%

Female 99% 98% 79% 96% 94%

Age*

Mean 46 40 43 47 44

Minimum 25 17 18 28 17

Maximum 72 58 75 73 75*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

Results (2)

Health characteristics BC

170≤n≤214

FM 96≤n≤117

AR 82≤n≤121

More 59≤n≤76

Total 407≤N≤528

Time passed since diagnosis*

Mean 2.9 5.0 7.6 6.8 5.0

Minimum 0 0 0 0 0

Maximum 15 38 31 51 51

Quality of Life (SF12)

Physical well-being* 43.0 32.1 33.2 29.5 36.5

Mental well-being 40.4 39.3 41.7 38.3 40.1*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

Results (2)

Health characteristics BC

170≤n≤214

FM 96≤n≤117

AR 82≤n≤121

More 59≤n≤76

Total 407≤N≤528

Time passed since diagnosis*

Mean 2.9 5.0 7.6 6.8 5.0

Minimum 0 0 0 0 0

Maximum 15 38 31 51 51

Quality of Life (SF12)

Physical well-being* 43.0 32.1 33.2 29.5 36.5

Mental well-being 40.4 39.3 41.7 38.3 40.1*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

Results (2)

Health characteristics BC

170≤n≤214

FM 96≤n≤117

AR 82≤n≤121

More 59≤n≤76

Total 407≤N≤528

Time passed since diagnosis

Mean 2.9 5.0 7.6 6.8 5.0

Minimum 0 0 0 0 0

Maximum 15 38 31 51 51

Quality of Life (SF12)

Physical well-being* 43.0 32.1 33.2 29.5 36.5

Mental well-being 40.4 39.3 41.7 38.3 40.1*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

Results (3)

Use of the online support group

BC167≤n≤214

FM95≤n≤117

AR97≤n≤121

More61≤n≤76

Total420≤N≤528

Number of years active*

Mean 1.7 2.4 2.4 2.9 2.2

Minimum 0 0 0 0 0

Maximum 8 9 9 9 9

Contributing postings

Yes 78% 81% 80% 80% 79%

No, I never sent a posting 22% 19% 20% 20% 21%*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

Results (3)

Use of the online support group

BC167≤n≤214

FM95≤n≤117

AR97≤n≤121

More61≤n≤76

Total420≤N≤528

Number of years active*

Mean 1.7 2.4 2.4 2.9 2.2

Minimum 0 0 0 0 0

Maximum 8 9 9 9 9

Contributing postings

Yes 78% 81% 80% 80% 79%

No, I never sent a posting 22% 19% 20% 20% 21%*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

Results (3)

Use of the online support group

BC167≤n≤214

FM95≤n≤117

AR97≤n≤121

More61≤n≤76

Total420≤N≤528

Number of years active*

Mean 1.7 2.4 2.4 2.9 2.2

Minimum 0 0 0 0 0

Maximum 8 9 9 9 9

Contributing postings

Yes 78% 81% 80% 80% 79%

No, I never sent a posting 22% 19% 20% 20% 21%*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

Results (4)

Frequency visits online support groups

BC167≤n≤214

FM95≤n≤117

AR97≤n≤121

More61≤n≤76

Total420≤N≤528

Frequency visits

More times a day 34% 29% 21% 34% 30%

About once a day 29% 27% 32% 24% 28%

More times a week 26% 24% 27% 24% 25%

About once a week 8% 13% 8% 15% 10%

More times a month 0% 0% 0% 0% 0%

About once a month 2% 3% 4% 3% 3%

Less than once a month 2% 4% 8% 2% 4%

Results (5)

Mean scores for empowering processes (1-4)

BC190≤n≤205

FM105≤n≤114

AR99≤n≤116

More66≤n≤75

Total460≤N≤510

Empowering processes

Exchanging information* 3.1 3.0 2.8 2.9 3.0

Finding recognition* 2.9 2.9 2.6 2.7 2.8

Sharing experiences 2.7 2.8 2.5 2.6 2.7

Encountering emotional support

2.2 2.3 2.0 2.1 2.2

Helping others 2.2 2.2 2.2 2.2 2.2*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

Results (5)

Mean scores for empowering processes (1-4)

BC190≤n≤205

FM105≤n≤114

AR99≤n≤116

More66≤n≤75

Total460≤N≤510

Empowering processes

Exchanging information* 3.1 3.0 2.8 2.9 3.0

Finding recognition* 2.9 2.9 2.6 2.7 2.8

Sharing experiences 2.7 2.8 2.5 2.6 2.7

Encountering emotional support

2.2 2.3 2.0 2.1 2.2

Helping others 2.2 2.2 2.2 2.2 2.2*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

Results (5)

Mean scores for empowering processes (1-4)

BC190≤n≤205

FM105≤n≤114

AR99≤n≤116

More66≤n≤75

Total460≤N≤510

Empowering processes

Exchanging information* 3.1 3.0 2.8 2.9 3.0

Finding recognition* 2.9 2.9 2.6 2.7 2.8

Sharing experiences 2.7 2.8 2.5 2.6 2.7

Encountering emotional support

2.2 2.3 2.0 2.1 2.2

Helping others 2.2 2.2 2.2 2.2 2.2*Test values for one-way analysis of variance (ANOVA) comparing the three illness groups were considered significant if p<.002.

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

BC171≤n≤182

FM96≤n≤98

AR86≤n≤90

More60≤n≤64

Total413≤N≤434

Empowering outcomes

Being better informed 3.8 3.8 3.5 3.8 3.7

Enhanced social well-being 3.4 3.4 3.2 3.4 3.4

Feeling more confident in the relation with the physician

3.4 3.4 3.2 3.4 3.3

Improved acceptance 3.1 3.4 3.2 3.3 3.2

Feeling more confident about the treatment

3.2 3.4 3.1 3.2 3.2

Increased optimism and control

3.2 3.3 3.0 3.1 3.2

Enhanced self-esteem 3.2 3.3 2.9 3.2 3.1

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

BC171≤n≤182

FM96≤n≤98

AR86≤n≤90

More60≤n≤64

Total413≤N≤434

Empowering outcomes

Being better informed 3.8 3.8 3.5 3.8 3.7

Enhanced social well-being 3.4 3.4 3.2 3.4 3.4

Feeling more confident in the relation with the physician

3.4 3.4 3.2 3.4 3.3

Improved acceptance 3.1 3.4 3.2 3.3 3.2

Feeling more confident about the treatment

3.2 3.4 3.1 3.2 3.2

Increased optimism and control

3.2 3.3 3.0 3.1 3.2

Enhanced self-esteem 3.2 3.3 2.9 3.2 3.1

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

BC171≤n≤182

FM96≤n≤98

AR86≤n≤90

More60≤n≤64

Total413≤N≤434

Empowering outcomes

Being better informed 3.8 3.8 3.5 3.8 3.7

Enhanced social well-being 3.4 3.4 3.2 3.4 3.4

Feeling more confident in the relation with the physician

3.2 3.3 3.1 3.2 3.2

Improved acceptance 3.1 3.4 3.2 3.3 3.2

Feeling more confident about the treatment

3.2 3.4 3.1 3.2 3.2

Increased optimism and control

3.2 3.3 3.0 3.1 3.2

Enhanced self-esteem 3.2 3.3 2.9 3.2 3.1

Results (7)

Being better

informed

(n=427)

More confident physician

(n=427)

Improved accep-

tance

(n=422)

More confident treatment

(n=422)

Increased

optimism

control

(n=421)

Enhanced self-

esteem

(n=413)

Enhanced social

well-being

(n=411)

Exchanging information

.43* .35* .31* .21* .30* .30* .28*

Encountering emotional support

.35* .32* .34* .27* .35* .38* .51*

Finding recognition

.42* .39* .34* .26* .34* .28* .31*

Helping others .25* .25* .28* .24* .30* .31* .37*

Sharing experiences .26* .27* .25* .28* .30* .33* .48*

Relationships between the processes and the outcomes

*p<.01

Results (8)

Being better

informed

(n=394)

More confident physician

(n=387)

Improved accep-

tance

(n=381)

More confident treatment

(n=382)

Increased

optimism

control

(n=373)

Enhanced self-

esteem

(n=371)

Enhanced social

well-being

(n=371)

Sex 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.

Education -13* -19** n.s. -.20** n.s. n.s. n.s.

Time since diagnosis

-.15* n.s. n.s. n.s. n.s. n.s. n.s.

R²=.08** R²=.07* R²=.02 R²=.07** R²=.03 R²=.02 R²=.03

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

*p<.01, **p<.001

Results (9)Extent to which outcomes can be predicted by the processes (Step 2)

Better informed

(n=427)

Confident physician

(n=427)

Accep-tance

(n=422)

Confident treatment

(n=422)

Optimism

control

(n=421)

Self-esteem

(n=413)

Social well-being

(n=411)

Exchanging information

.25** .16* n.s. n.s. n.s. n.s. n.s.

Encountering emotional support

.22** n.s. n.s. .19* n.s. .21* .30**

Finding recognition

.23** .24** n.s. .20* .18* n.s. n.s.

Helping others n.s. n.s. n.s. n.s. n.s. n.s. n.s.

Sharing experiences

n.s. n.s. n.s. n.s. n.s. n.s. .19*

R²=.31** R²=.25** R²=.13** R²=.23** R²=.20** R²=.19** R²=.30***p<.01, **p<.001

Results (9)Extent to which outcomes can be predicted by the processes (Step 2)

Better informed

(n=427)

Confident physician

(n=427)

Accep-tance

(n=422)

Confident treatment

(n=422)

Optimism

control

(n=421)

Self-esteem

(n=413)

Social well-being

(n=411)

Exchanging information

.25** .15* n.s. n.s. n.s. n.s. n.s.

Encountering emotional support

.22** n.s. n.s. .19* m.s. .21* .30**

Finding recognition

.23** .24** n.s. .20* .18* n.s. n.s.

Helping others n.s. n.s. n.s. n.s. n.s. n.s. n.s.

Sharing experiences

n.s. n.s. n.s. n.s. n.s. n.s. .19*

R²=.31** R²=.23** R²=.13** R²=.23** R²=.20** R²=.19** R²=.30***p<.01, **p<.001

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

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.

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.

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.

Financers

This project is financed by: