Joining a Support Group
Paul Sykes
PhD Student
Why did you join?
The focus of this presentation is the
decision to join, the initial impressions
and the decision to stay
PhD Thesis
Title: An Ethnographic Study of Support Groups;
the Pain Account of Older Members
Research Question: What is the purpose of
support groups from the perspectives of older
adult group members experiencing chronic
pain?
Research Aims
Main Research Aims:
•
To understand the purpose of support groups
•
To explore the pain accounts of older adult
group members
Obtaining Data
• Exploration of a group or culture suggests that
ethnography is a logical methodology
• Data was obtained from:
– participant observation
– group artefacts
– semi-structured interviews of older group participants
Introduction
• Three chronic illness support groups in Northern
England were identified:
– Arthritis Care (1)
– Multiple Sclerosis Movement (2)
– Fibromyalgia (3)
• Groups were located via flyers in medical
centres/hospitals, National Charitable
Organisations internet sites and word of mouth
Group Biographies
• All groups are affiliated to a NCO
• Fibromyalgia (FM) and Arthritis Care (AC)
groups were started by medical professionals
• Multiple Sclerosis (MS) movements meets
weekly
• FM and AC meet monthly
• All the groups are set up to provide information
and support for professionals, individuals and
their families and carers
Core Membership
• Core members of a group are identified as those
that attend each meeting
• AC had the largest core membership (14)
• Interview participants were sampled from the
core membership
• MS had no new members join
• FM had the largest number of new members
and also one meeting attendees
Observation Period
• It was intended that the participant observation
phase of the study would be one calendar year:
– Arthritis Care
– MS movement - 3 months
– FM - 10 months
• Group artefacts:
– Newsletters
– minutes from meetings
– written information
Interviews
• Semi-structured
– pain history
– self help group history
• Participants were aged 59 to 78 years
• Interviews took place in participants homes
• 1 – 2 hours to complete
Reporting the Findings
The presentation of the findings revolve around:
• Group practicalities
– Venue, meeting times, room layout, meeting format
• The people
– Leaders, members, speakers
• Interview participants accounts of their pain
Reasons for Interest in a Support
Group
• Voerman et al. (2007) reasons for interest
in SG:
– Lack of social support
– Age (lower age)
– Attitude
– perceived control of illness
Why Join a Support Group?
• Butow et al (2007). top 4 reasons for joining SG:
– Knowing you are not alone
– Hearing about current medical research
– More informed about side effects and coping
– Learning how other people cope
Reasons not to Join
• Why don't you join (Bui et al. 2002)?
– enough support already
– live too far away
– have no need
In this Study
• The top 4 reasons as:
– Medical professional interest (Carlsen, 2003)
– Information gathering
– Altruism
– Use it or lose it
• There was also strong evidence of social
comparisons (Dibb and Yardley, 2006)
The focus of this presentation
Member
Interest
Support Group process
Locating
Joining
First
meeting
Participant Biographies
Diagnosis
Length of
Illness
Length of
Previous
Membership Occupation
B1
Rheumatoid Arthritis
25 years
5 years
Foundry Worker
D1
Rheumatoid Arthritis
20 years
5 years
SRN
M1
Psoriatic Arthritis
15 years
5 years
Corporate Trainer
A2
Trigeminal Neuralgia
15 years
6 years
Lunch Supervisor
H3
Fibromyalgia
18 months
2 weeks
RMN/RMHN
J3
Fibromyalgia and
amputation of toe
10 years
9 years
Civil Servant
C3
Fibromyalgia
30 years
9 years
Fitness Instructor
J3a
Fibromyalgia
25 years
8 years
Administrator
D3
Fibromyalgia
25 years
3 years
Banking
Locating – Medical professional
influence
• It was at the hospital that...she said she would
like to start a group (D1)
• One of the doctors at the surgery we go to...he
said have you heard of ARC? (B1)
• She [the nurse] gave me a load of gumph about
it [the illness] and then they said that there was
this support group that had just started. (M1)
• I kept asking my doctor, he said nothing existed.
It took me 9 years to find this group. (FM anon)
Locating - Advertising
• On the internet (J3A)
• I saw the advert for the group in [names hospital]
(D3)
• and she wrote in [to the newsletter] anybody in
[names city] would like to help start a self help
group. (J3)
• Other
– I think that it was a fluke somehow...I don't know how
I got to know about that (A2)
Summary
• Medical professionals help to provide
information about support groups
• Advertising of the groups is also and important
element
Joining – Medical professionals
• no it was that [names the physio] asked
me if I would join the initial one. (D1)
• He said to me you play ball with me H and
I will play ball with you, he says you must
look for a support group. (H3)
Joining – Information
• The reason I went was to find out more
about the condition (M1)
• I just wanted to see other people who had
fibromyalgia (anon FM)
Joining – other reasons
• you['re] giving something back you've taken you
know you've had a lot out so you give a bit of
something back (B1)
• it is because there's not, am not being awful but
there's not a lot of other things really you know
when you are diagnosed [with MS]. (A2)
Summary
• There are push and pull factors
• Medical professionals can be a push factor
• The need for information about the condition is
also a pull factor
• Knowing you are not alone is another influence
but does not mean that attendees remain group
members
Negative Initial Perceptions
– M1: I think [that] people think that all you talk about is
your condition and you don't pick up information
– I: did you have those preconceptions?
– M1: yes I think I probably did.
• well at first I I I you’re always a bit apprehensive
aren't you? (J3A)
– I: did you imagine everyone would be sat around
discussing the illness?
– YEAH I DID but they're not are they as you know.
(D3)
Summary
• Only a small number of participants had initial
impressions about what a support group was
• These initial impressions for the interview
participants were unfounded
• Where the initial impressions of the new
attendees unfounded?
• Is there a need to overcome these impressions?
The first meeting
• I just thought I'd go see what it was about I had
no idea what it's about. (D1)
• the first meeting, well the first meeting I went to
because the group was quite new erm they
weren't quite sure what they were going to do
but I got quite interested. (M1)
• we went down and [group leader] made us very
welcome. (B1)
The First Meeting - negative
• No, No I didn't expect it to be like that. I thought
it was a bit of a mish mash did you find that? A
bit of a mish mash and I don't know. (H3)
Summary
• The first meeting is the test for many new
members
• Initial impressions for some can fade during the
first meeting
Conclusions
• Previous work on medical support groups focus
mainly on cancer
• There are many factors that can influence a
person to join a support group. This study
demonstrates that loneliness is not a
contributing factor
• Preconceived ideas need to be overcome
• Medical Professionals can influence the decision
to join but the decision to stay is individual
References
BUI Luke L., LAST Linda, BRADLEY Holly, LAW Calvin, MAIER Barbara-Anne and
SMITH Andrew J. (2002). Interest and Participation in support group programs
among patients with colorectal cancer. Cancer Nursing. 25 (2): 150 - 157
BUTTOW Phyllis N., KIRSTEN Laura T., USSHER Jane M., WAIN Gerard V.,
SANDOVAL Mirjani, HOBBS Kim M., HODGKINSON Katharine and STENLAKE
Annie (2007). What is the ideal support group? Views of Australian people with
cancer and carers. Psycho – Oncology. 16 1039 - 1045
CARLSEN Benedicte (2003). Professional support of self-help groups: a support group
project for Chronic Fatigue Syndrome patients. British Journal of Guidance and
Counselling. 31 (3) 289 -303
DIBB Bridget and YARDLEY Lucy (2006). How does social comparison within a self-help
group influence adjustment to chronic illness? A longitudinal study. Social Science
and Medicine. 63 1602 - 1613
VOERMAN Bert, VISSER Adriaan, FISCHER Maarten, GARSSEN Bert, VAN ANDEL
George and BENSING Jozien (2007) Determinants of participation social support
groups for prostate cancer patients. Psycho – Oncology. 16 1092 - 1099