Living with multiple health problems

Peer Support

Support from others can be crucial in helping people to cope with illness. This topic is about people using their social contacts to help them manage their conditions or ill health. Such social contacts could be anybody from a partner or family member through to a community contact or somebody found via a patient support group or disease society. It is known from previous research*,** that pets can also help people manage long term health conditions, so we included them in our definition of ‘people’ who might provide social support for somebody.

Anne X spoke about social isolation and the loss of traditional communities. She missed the support of a “decent” Parish church. People with health problems can find themselves coping alone (or with a partner struggling to care). In light of this, Anne X spoke about the benefits of group activities for people with multiple health problems, such as singing therapy. Many people find useful advice and one-to-one support from other people via the Internet. Amy, one of the youngest people interviewed, described how she adapts tips from online support groups to her own circumstances. Many people received support from patient or disease charities or support groups and benefitted from learning how other people managed their condition(s). For Lottie, attending such a group spurred her on to demand specialist input to her care. Michael Y and his wife Pauline used to attend an epilepsy support group, but it had closed down. Pauline was hoping to find support through a carer’s forum.
Several people had used the Internet in various ways to help manage their health problems. Some simply used it as a means of finding relevant groups that could be attended ‘offline’ in face-to-face meetings. As with Amy, above, others used online support groups, e.g. via ‘chat’ forums or Facebook pages, etc. Lee had used such forums to find dietary advice in relation to diabetes. However, because she is Type II, she did not feel that all the information on the forums was relevant to her. When he experienced problems with his balance, Graham went on a specialist website and was able to devise his own home exercise treatment plan.
Most people did not seem to be involved in general community groups (e.g. churches, coffee mornings, clubs and societies), or if they were they did not mention them during the interviews which suggests they did not see a relevance to health. Fred spoke of the need for a face-to-face community group where older people could share information. He believed there used to be a group and also wondered if maybe he wasn’t out mixing with people enough. Similar to parts of Anne X’s experiences, Jean reported feeling like an outsider where she lived as she was a recent arrival into a community where everyone knew everybody else. A lady from Age Concern did take her out to tea occasionally. The most striking example of where there had been interaction between a person with multiple health problems and the local community was in Lottie’s case, where her daughter’s school had given epilepsy awareness training to the pupils and some said they were raising money for epilepsy charities.

By contrast, help and support from partners, family members and friends was a common theme. Leonard, Barry and Fiona all pointed to the help that they had from wives or husbands. In addition, Sue and Lottie also mentioned support from their children acting as young carers. However, David, who had lived alone since his wife died, said that he found it easier to cope with difficulties without somebody else “fussing about it.” Others mentioned feeling guilty about the impact their condition could have on other people close to them. For instance, Angela was concerned that she was an extra burden on her parents who already had care responsibilities for others.
Tammy and Pat both had husbands who worked (or had worked) in medicine and could be called upon for advice or to accompany them to health appointments. Pat and Val both had daughters who would accompany them to potentially problematic health appointments. However, support wasn’t always forthcoming from friends and family from whom it might be expected. Derrick felt his immediate family “didn’t want to know” when he had a stroke. Chris had a similar experience in relation to his friends. Farza’s parents found it difficult to accept a mental health diagnosis, which led Farza to social isolation and coping alone.
The companionships of pets can also help people cope with illness. Kevin was the only person in our study who specifically mentioned a pet helping him to cope with a condition; in this case, hip pain.
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* Helen L Brooks, Anne Rogers, Dharmi Kapadia, Jack Pilgrim, David Reeves, and Ivaylo Vassilev. Creature comforts: personal communities, pets and the work of managing a long-term condition. Chronic Illness 1742395312452620, first published on July 9, 2012 doi:10.1177/1742395312452620 
 
**. Ziebland, S., Ryan, S., 2015. On interviewing people with pets: reflections from qualitative research on people with long-term conditions. Sociology of Health and Illness. (Wiley Online Library) DOI: 10.1111/1467-9566.12176

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