ANÁLISIS AMOFHIT

their attending was to gather views and knowledge from those who also had the condition. The belief seemed to be that only those living with a long-term condition

could fully „understand‟ the nature of it. The role of the patient support group

involves more than gaining information.

As the following quotation illustrates, groups can give people a sense of how to manage their conditions in ways that receiving medical information can not:

You‟ve been given the clinical information but know very little else about it.

You‟re frightened it‟s going to put so many restrictions on your lifestyle … You realize by talking to other people who‟ve lived with it for years that…it‟s not going to be a restriction … just a different way of doing things ... That … takes a big load off other people‟s shoulders and … realizing as well that

they‟re not all alone.

Interview 3, tu: 304, Female, Aged 47, Diagnosed forty years ago, recruited from epilepsy patient support group

Other members commonly highlighted that they shared experiences with others and gained comfort in the knowledge that others were facing similar issues including feelings of stigma, as the following quotes illustrates:

It‟s helped me come to terms with some of it…Some of the things that used to

happen to me I used to think I must be the only one! … When you get talking in a group you realize it‟s happening to other people as well. That kinda helps. You know you‟re not the freak you thought you were!”

Interview 21 tu: 181, Male, Aged 56, Diagnosed twelve years ago, recruited from epilepsy patient support group

I don‟t know many other diabetics because they keep themselves to themselves

… You know we‟re all in the same boat, let‟s all talk about it! ... They‟re all

there because they want to share any experiences.

Interview 13, tu: 176, Female, Aged 61, Diagnosed twenty-nine years ago, recruited from diabetes patient support group

The group setting thus provided an opportunity to meet with their peers which was particularly beneficial to some in reducing feelings of social isolation. Those living with diabetes also expressed the benefits they felt when sharing their experiences of living with the condition as they did not often have the opportunity to discuss such issues.

However attending the group itself was not necessarily a straightforward process. The following quote illustrates that amongst those attending patient support groups a level of acceptance of the condition exists. One woman reflected that attending the meeting is in itself a form of disclosure and this some may find difficult:

A lot of people wouldn‟t even come forward and step over the pathway to

come into the group. As soon as they walk in you know they‟ve got epilepsy …I think they‟re scared that you‟re “announcing yourself” as epileptic.

Interview 15 tu:328, Female, Aged 48, Diagnosed thirty-two years ago, recruited from Epilepsy Patient Support Group

Indeed, some of those who attended a patient support group commented that they were aware that it was mainly older people who attended. There was a commonly held view by older participants that younger people living with long-term conditions

may not wish to attend since it may emphasise the notion of being “different” to

others. This was something that many group members had experienced when they were younger as the following quote illustrates:

There weren‟t any youngsters there (at the meeting), none at all… They want to get on with life –and you feel it‟s an old fogies complaint … You perhaps still feel and share the embarrassment that I did in those early days, that you‟re

different!

Interview 4, tu: 441, Male, Aged 71, Diagnosed fifty-eight years ago, recruited from diabetes patient support group

Group leaders were aware that few younger people attended and were actively seeking ways to address this:

I think young people are the ones that we really need to make contact with … Explain to them how to disclose it and why it‟s better to let other people

understand.

Interview 3, tu: 494, Female, Aged 47, Diagnosed forty years ago, recruited from epilepsy patient support group

Others cited difficulties reaching out to younger people in terms of how to contact them, they were aware the format of the group meetings may not appeal to them:

It seems old fashioned to them people sitting around drinking cups of tea just having a discussion. I think they like things to be hip and trendy and when

they see a group of over 50‟s sitting around they feel … they‟re back in the school situation again … My idea is to somehow ask some of these people, but

the medical people won‟t give you the names of the people that are involved.

Interview 17, tu:50, Aged, 67, Male, Diagnosed thirteen years ago, recruited from diabetes patient support group

Thus younger people living with long-term conditions may require groups or information sources tailored to their specific needs which are likely to be different to those of older people living with the same conditions.