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
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