FOLLOW-UP To ONLINE SUPPORT GROUP STUDY - Univ of Nottingham

[emeraldize]

Those of you who participated in the study by Eleanor Bennett and requested a follow-up results report have received what follows. For those of you who did not participate, but participate on this forum, I've copied the report. What's noteworthy is that  39% of her respondents were HIV positive.

 


Executive Summary: How does the experience of participating in online support groups change over time?

Prepared by: Eleanor Bennett MSc
Supervisor: Dr Neil Coulson, Associate Professor in Health Psychology, Institute of Work, Health and Organisations, University of Nottingham, UK.

Objective & Rationale
There has been a significant increase in the number of people with chronic illness accessing and participating in online support. Studies have demonstrated a range of benefits to participation, including increased social support, patient empowerment and access to medical information. A smaller number of studies have suggested possible drawbacks to participation including feelings of social exclusion within the group, and distress from reading others posts. However little research attention has looked at how the balance of benefits and drawbacks are affected by how long the participant has been engaged with the group. By understanding more fully the processes that occur within OSGs this could help guide moderators and forum providers to support users needs effectively.

The aim of this study was therefore to explore how the experience of participating in online support groups (OSGs) changes over time for individuals with chronic illness.

Methods
61 Participants were recruited from several OSGs and patient advocacy group websites, across a range of chronic illnesses including MS (9%), Migraine (14%), IBS (9%), Osteoporosis (3%), HIV/AIDS (39%) and Endometriosis (13%). 63% of participants were female and participants age ranged from 22-72. Average length of engagement on the OSG was 40 months (range 2-150 months). Participants were predominantly from the US and UK.

Participants completed an online survey which had a range of multiple choice and open-ended questions concerning both current and past OSG use, in order to understand motivation to access the group, usage patterns and perceived benefits and drawbacks from participation. The data was analysed qualitatively; responses were read carefully and different factors were grouped so that themes could be established.

Findings
The findings suggest that time on the group is an important factor in determining the perceived benefits and drawbacks of participation of OSGs. A range of positive experiences and processes can facilitate a deepening involvement and consolidation of initial membership. However conversely, more negative experiences, such as bullying, can cause participants to reduce or withdraw their involvement. In addition the study findings suggest that OSG involvement can improve offline relationships.

From the survey responses it appeared that initial contact with the OSG for many participants, came about due to a change in health status, such as a diagnosis or a change in symptoms. Although some individuals searched directly for online support, others found it by chance as a search for information online returned results from OSGs. The visibility of OSG information within internet search engine results therefore appears to be providing a route in for people who had perhaps not considered using an OSG, or searching for one directly.

The analysis also showed that there is a need for support and information that is not always met by health professionals, or by in person support groups. This lack of support provides a further motivation to access OSGs. The geographical reach of OSGs therefore is able to fill this gap, and enable individuals to connect with others in a similar situation to themselves.

A broad range of positive benefits were attributed by many participants to OSG involvement. For example individuals found the OSGs to be a good source of information, support and empathy. In addition participation had positive effects on empowerment with health professionals, improved outlook regarding living with a chronic illness and largely benefitted offline relationships. The experience of these benefits, in addition to processes of positive feedback and increasing feelings of community, helped to consolidate membership for many individuals.

Over time many members reported a change in the nature of their involvement, with a move in emphasis from receiving information and support, to giving these to other members. This change was attributed to initial needs being met and acquired knowledge of both the OSG and the illness. A further motivating factor was to reciprocate earlier support, by assisting new members.

Several processes prevented individuals interacting in the OSG in the way they may like to. Not all participants had experienced problems however there were some issues raised. Bullying was the clearest example of this, and the observation of this behaviour can lead to individuals becoming reluctant to make a first posting. Research has shown that lurkers often choose not to post due to interactions with the community, and not through pre-intention. Therefore bullying may act to prevent people from crossing this barrier. In addition some established members reported reducing their posting levels in order to reduce their exposure to this negative aspect and therefore in some instances were unable to gain the online support that they had initially benefitted from. Bullying may be an issue of particular concern because according to the responses, new members, who were often recently diagnosed, were more commonly the victims of this.

Other issues with OSG use stemmed from differences within the group and these echoed earlier research. The existence of ‘cliques’ and broader problems of support appearing conditional, led to individuals feeling excluded if they were, for example, recently diagnosed as opposed to a long-term sufferer. In addition some individuals who followed a treatment plan which was at odds with more dominant members of the group, reported feeling unsupported, and this indicates of the need for flexible leadership by OSG administrators and moderators.

A positive finding from the research was that use of OSGs can strengthen offline relationships with family and friends. In line with research on in person support groups, having a separate space to vent and receive support appeared to relieve the burden on family, and improve relationships. In addition there were instances of the forging of new offline friendships with people from the OSG and of involvement leading to offline activities such as advocacy.

Conclusion
Overall the findings suggest that time on an OSG is an important factor in determining the balance of perceived benefits and drawbacks of participation. A range of positive experiences can facilitate consolidation of membership. Conversely, negative experiences, such as bullying or conditional support can cause participants to reduce their involvement.


Implications for Online Support Group Providers and Recommendations.
This exploratory research indicates that different OSG provides a range of benefits for many individuals with chronic illness. However users may have different needs depending on the length of time of involvement with the group and/or the chronic illness in question.