More MS news articles for May 2004

How MS caregivers view support from others

http://www.bostoncure.org:8080/article.pl?sid=04/05/24/1152229&mode=nested

May 24th, 2004
Hollie
Boston Cure Project

Being a caregiver for someone with MS -- i.e., helping him/her continue living at home despite disabilities -- can be a very demanding job which is made more difficult by the unpredictability and long-term nature of the disease. A team of researchers from Northern Ireland looked into how and when caregivers seek out support from family, friends or agencies, and documented their attitudes toward outside support. Through four focus group discussions involving a total of 16 caregivers, the team identified a series of common themes concerning acceptance of support:

"Rejecting" support -- Most caregivers described receiving offers of support in the early course of the disease, but tended to reject them. Reasons for rejecting support include not wanting to learn about the disease, wanting to shield the care recipient, perceiving embarrassment or pride on the part of the care recipient, or wanting to maintain a "normal" home life, especially if there were still children at home.

"Resisting" asking for support -- As the care recipient's needs increased over time, caregivers typically realized that they could benefit from help from others, yet still resisted asking for it. This was partly due to the fact that the addition of extra responsibilities was gradual, just like the progression of the disease. Caregivers also expressed pride in being the sole caregiver, a sense that they had sole responsibility for the care recipient, a need to appear as though they were "coping," and a reluctance to burden others. Some noted that their family and friends had stopped offering to help after having been rejected repeatedly; some also expressed annoyance that family members were not more forthcoming with help.

"Seeking" support -- Those caregivers who had sought support typically did so after reaching a crisis point where they were forced to find help. Often this was due to no longer being able to physically move the care recipient, e.g., from wheelchair to car. However, many noted difficulties in getting support, such as long waiting periods for wheelchairs or lack of responsiveness from MS organizations. They also reported a lack of formal information about the resources available to them, and often said they learned about their options through informal channels such as other caregivers or magazine articles.

"Accepting" support -- Some caregivers who found a source of support for their needs expressed satisfaction with the support and accepted it. However, others expressed dissatisfaction with the quality or consistency of the support and some even chose to reject the support and continue coping alone.

The authors recommend that health care professionals be aware of the dynamic and individual attitudes of caregivers toward outside support, especially when discussing interventions with caregivers and recipients. Health care providers also need to work with caregivers in need of support to learn how to accept it. Because high-quality, consistent support can be difficult to arrange, it also seems to me that caregivers would be well-advised to overcome their resistance to receiving help and proactively identify potential sources of support (formal and informal) before they are actually needed.