More MS news articles for May 2004
How MS caregivers
view support from others
May 24th, 2004
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
"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.
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.
"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
Copyright © 2004, Boston Cure Project