Participation in online patient support groups endorses patients’ empowerment

doi:10.1016/j.pec.2008.07.044

Patient Education and Counseling

Volume 74, Issue 1, January 2009, Pages 61-69

https://doi.org/10.1016/j.pec.2008.07.044 Get rights and content

Abstract

Objective

Although much has been expected of the empowering effect of taking part in online patient support groups, there is no direct evidence thus far for the effects of participation on patient empowerment. Hence our exploring to what extent patients feel empowered by their participation in online support groups, and which processes that occur in these groups are related to the empowering outcomes.

Methods

An online questionnaire was completed by 528 individuals who were active in online groups for patients with breast cancer, fibromyalgia and arthritis.

Results

The respondents felt empowered in several ways by their participation. The empowering outcomes that were experienced to the strongest degree were ‘being better informed’ and ‘enhanced social well-being’. No significant differences in empowering outcomes between diagnostic groups were found. The empowering outcomes could only be predicted in a modest way by the processes that took place in the online support groups.

Conclusion

This study indicates that participation in online support groups can make a valuable contribution to the empowerment of patients.

Practice implications

Health care providers should acquaint their patients with the existence of online support groups and with the benefits that participation in these groups can offer.

Introduction

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 [1], [2], [3]. Empowered patients are considered to be successful in managing their condition, collaborating with their health providers, maintaining their health functioning and accessing appropriate and high quality care [4].

Much has been expected of the potential empowering effect of taking part in online support groups for patients [5], [6], [7], [8], [9]. So far, however, there is no direct evidence for the effects of participation in online support groups on patient empowerment [10], [11].

An explanation for the deficiency of studies investigating the effect of participation in online support groups on patient empowerment might be that the concept is inconsistently defined [12], [13], [14]. There is a great deal of ambiguity with regard to the precise nature of patient empowerment [15], [16].

Within the context of online support groups, only a couple of studies have focused on the concept of patient empowerment. The focus of most of these studies was to identify the processes that take place in online support groups [17], [18], [19], [20], [21], while some studies focused on the outcomes experienced by the participants [22], [23], [24], [25]. In our opinion, the empowerment concept is operationalized in a limited fashion within these studies. Some studies claim that they study empowerment, but they focus mainly on one aspect of the empowerment concept, such as the doctor–patient relationship. Therefore, we first conducted a qualitative study among participants of online patient support groups to obtain a complete overview of patient empowerment [26]. Results revealed that the following empowering processes occurred in the online support groups: exchanging information, encountering emotional support, finding recognition, sharing experiences, helping others and amusement. The respondents mentioned the following empowering outcomes: being better informed, feeling confident with their physician, their treatment and their social environment, improved acceptance of the illness, increased optimism and control, enhanced self-esteem and social well-being and collective action.

Despite the fact that this qualitative study revealed relevant information about the empowering processes and outcomes of online support groups, a qualitative study has its limitations. We could not draw any conclusions on the frequency with which the empowering processes and the empowering outcomes of online support groups occurred. Relationships between processes and outcomes could not be determined on the basis of the interviews. Finally, the results of the qualitative study revealed indications for possible differences in empowering processes and outcomes between the patients groups studied. However, because of the small sample size, no clear or consistent differences could be confirmed.

The primary purpose of this quantitative study was to explore, by means of a questionnaire, to what extent patients feel empowered by their participation in online support groups and with which frequency empowering processes occur. In addition, two more research questions guided this study. First, which processes that occur in online support groups are related to these outcomes? Second, are there any differences between patient groups with regard to empowering processes and outcomes?

Section snippets

Sample and procedure

We focused our study on online support groups for patients with breast cancer, fibromyalgia and arthritis. We chose to explore these three groups because of the contrast between the illnesses (life-threatening, unexplained and chronic disabling). We searched the Internet with the search engine Google to identify all Dutch online support groups for patients with breast cancer, fibromyalgia and arthritis that were active (receiving > 30 postings a month). In total, we found 20 groups. We asked the

Demographic and health characteristics

Of the respondents 41% had the diagnosis breast cancer, 22% had the diagnosis fibromyalgia and 23% of the respondents indicated to have arthritis. The other respondents (14%) indicated to have more than one of these three diagnoses.

Most of the respondents were women (94%) (Table 1). The average age of the respondents was 44 years. The majority of the respondents were married or living with a partner (79%). In total 33% of the participants had a low level of education, while 41% had a medium

Discussion

To the best of our knowledge, this study is the first quantitative study that illustrates how participants in online support groups feel ‘empowered’ by their participation. Earlier research was mainly qualitative, as a result of which the extent to which participants felt empowered, and the frequency with which the empowering processes occurred in the online support groups could not be determined.

Results of the present study were in line with the results of our earlier qualitative study, by

Acknowledgements

This study was supported by grants from the Netherlands Organisation for Health Research and Development (ZonMw), the Dutch Arthritis Association, and Comprehensive Cancer Centre Noord Oost (IKNO).

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View full text

Participation in online patient support groups endorses patients’ empowerment

Abstract

Objective

Methods

Results

Conclusion

Practice implications

Introduction

Section snippets

Sample and procedure

Demographic and health characteristics

Discussion

Acknowledgements

Patient Educ Couns

Patient Educ Couns

Patient Educ Couns

Patient Educ Couns

Nurse Educ Today

Patient Educ Couns

Int J Nurs Stud

J Epilepsy

Patient Educ Couns

Patient Educ Couns

Comput Human Behav

Interact Comput

Patient Educ Couns

Patient Educ Couns

Patient empowerment: a look back, a look ahead

Diabetes Educ

Development of the patient activation measure (PAM): conceptualizing and measuring activation in patients and consumers

Health Serv Res

The impact of the Internet on cancer outcomes

Ca-Cancer J Clin

Patient, heal thyself: health in the information age

The Futurist

What I’ve learned from E-patients

PLoS Med

Provider-sponsored virtual communities for chronic patients: improving health outcomes through organizational patient-centered knowledge management

Health Expect

Health-related virtual communities and electronic support groups: systematic review of the effects of online peer-to-peer interactions

Br Med J

Patient empowerment in the United States: a critical commentary

Health Expect

Towards the Measurement of Psychological Health Empowerment in the General Public