Symposia/Symposium
Online support groups in physical and mental health: Process, outcome and user experience
Convenor: Prof Chris Barker
UCL
A fundamental benefit of the internet is that it enables
people to help each other out with their problems, regardless of time of day or
geographical location. Countless online forums or internet support groups now
exist, encompassing all conceivable types of human problems. Such groups are a
fascinating arena for researchers studying the process and outcome of
psychological help and support.
The proposed symposium will focus on online support groups
in physical and mental health. Such groups, also known as internet support
groups or peer-to-peer communities, typically allow users to exchange
information or to offer and receive empathy or encouragement. They represent a
potential complementary, low-cost intervention for health and social service
professionals to draw upon.
The first paper in the symposium (Dean, Potts & Barker)
examines the process and outcome of online support for depression and anxiety.
The second paper (Breuer & Barker) addresses the experiences of NHS clients
with depression who joined online support group as a supplement to their usual
treatment. The third paper (Mifsud & Potts) compares online and
face-to-face support groups for people with HIV/AIDS, and the fourth (Coulson)
examines the role of social networking for patients with inflammatory bowel
disease.
The discussion will address the implications of the research
for clinical, health and community psychology.
Paper 1:
A randomised controlled trial of online support groups for
depression and anxiety
Jeremy Dean, Henry Potts & Chris Barker, UCL
Objectives: Online peer-led support groups for psychological
problems are ubiquitous on the internet. This paper examines whether online
support groups (OSGs) for depression and anxiety are beneficial. The hypothesis
is that OSGs are effective in ameliorating depression and anxiety and
increasing perceived social support.
Design: Six-month, randomised controlled trial with
participants randomised to either: (1) an online support group; or (2) an online
expressive writing task.
Methods: 863 participants (628 female) UK and US volunteers
were recruited via the internet. 568 were randomised to the OSG condition (at six
months 103, 82 per cent attrition) and 295 randomised to the expressive writing
condition (at six months: 101, 65 per cent attrition). Standard measures
(depression, anxiety, social support and satisfaction with life) were
administered at intake, three months and six months.
Results: Both groups improved on all measures, but there
were few differences between conditions. The effect sizes (for time main
effect, baseline to six months) were d=0.63 for depression and d=0.46 for
anxiety.
Conclusion: As there was little difference in outcome
between the online support and expressive writing conditions it was difficult
to draw definite conclusions, but both conditions appeared to be beneficial.
However, participants reported that the expressive writing was highly acceptable
but there was very mixed and often negative feedback for the OSG. As a result
there was higher attrition and less adherence in the OSG.
Paper 2:
Engagement with online support groups for depression
Louise Breuer & Chris Barker, UCL
Objectives: This study explores the experiences of NHS
patients with depression who were offered facilitated access to an online
peer-to-peer support group for people with depression. In particular, it
examines the barriers which prevent people from engaging with such a group in
order to inform the development of future interventions.
Design: This is a qualitative study, which allows for the
detailed exploration of participants’ experiences of the online support group.
Pre- and post-measures of level of depression, perceived social support and
stigma were also taken, to set the interview data in context.
Method: Ten participants experiencing depression were
offered facilitated access to an existing online support group over a period of
10 weeks. Their use of the group was monitored over time via email. At the end
of this period, they were interviewed about their experiences of using the
group.
Results: Positive aspects of the online support groups
include normalisation, reduced sense of isolation and trying new strategies
through connection with similar others; negative aspects include feeling
different from the others in the group, feeling constraints on what could be
said, and worries about the impact of others’ negative mood.
Conclusions: The implications for using online support
groups for NHS clients with depression will be discussed.
Paper 3:
Comparing experiences within face-to-face and online support
groups for persons living with HIV/AIDS
Anabel Mifsud & Henry Potts, UCL
Objectives: There are many face-to-face and online support
groups (OSGs) for persons living with HIV/AIDS (PLWHA), but to date no studies
comparing experiences across the two types of group.
Design: Exploratory qualitative study using semi-structured
interviews.
Methods: Seven face-to-face interviews with PLWHA involved
in face-to-face groups based in London. Seven interviews, using email or Skype,
with PLWHA involved in international OSGs. A grounded theory methodology was
used to guide data collection and analysis.
Results: The study revealed several shared elements between
participants’ support group experiences and also a few differences. Most
participants using face-to-face and OSGs were satisfied with their support
group experiences and shared common reasons for joining and remaining in their
groups. With the exception of tangible support, which was only mentioned by
those in face-to-face groups, participants reported several common empowering
processes, including receiving information, obtaining emotional support,
achieving a sense of belonging, a redefinition of the sick role, finding positive
meaning and hope, and developing social networks. Information was given more
weight by online participants; emotional support and a sense of community were
more prevalent among face-to-face participants. The type of discussions in
face-to-face and OSGs were similar, but online participants adopted a more
guarded attitude about disclosing private life issues. Funding was the only
negative aspect mentioned by face-to-face participants, whereas interpersonal
conflicts were more prevalent in OSGs.
Conclusions: Face-to-face and OSGs have much to offer to
PLWHA. OSGs can be an alternative source of support to the traditional
face-to-face groups.
Paper 4:
The role of social networking sites for patients living with
inflammatory bowel disease (IBD)
Neil Coulson, Nottingham University
Objectives: This study aimed to explore the experiences of
those patients who had joined IBD-related Facebook groups. There were three
research questions: (1) reasons for accessing group; (2) advantages and
disadvantages of seeking support online; and (3) how participation has helped
patients manage IBD.
Design: This was a cross-sectional survey design.
Methods: An online survey link was posted to a range of
IBD-related Facebook groups. Patients were asked to complete a range of both quantitative
measures and open-ended questions
Results: 87 patients participated in the study (73 female)
aged 17 to 53 years (mean=32.7). Based on their ratings of 15 possible reasons
to access an IBD-related Facebook group, the most popular were:
‘To find others in a similar situation’ (87.7 per cent); ‘To
learn new information about my condition’ (70.4 per cent) and ‘To share experiences’ (67.9 per cent).
Qualitative analysis of the open-ended responses revealed a number of
advantages of support via social networking sites: (1) convenience; (2)
connecting with similar others; (3) up to date medical information; and (4) advice, support and understanding. These were considered
helpful in coping with IBD and for some, their online activities appeared to
contribute to a more positive adaptation to IBD and symptom management.
Conclusions: The results suggest there may potentially be
clinical benefits attached to the use of social networking sites, however, there
is a need to undertake more methodologically robust research. In the meantime,
patients do appear to value the opportunity to meet like minded others and
share their IBD illness stories.
