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

Support Group process

Interest Member

Locating JoiningFirst

meeting

Participant Biographies

Diagnosis Length of Illness

Length of Membership

Previous 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