Caregiver perceptions of accomplishment from assisting MS’ers

Epub ahead of printBuchanan and Huang. Caregiver perceptions of accomplishment from assisting people with multiple sclerosis. Disabil Rehabil. 2011 Sep 29.

Objectives: Identify factors of informal caregivers, caregiving, and people with MS receiving assistance that are associated with perceptions of caregiver accomplishment.

Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analysed to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers. 
Results: The researchers found that age of the person with MS and duration of caregiving measured by the number of hours per week the caregiver assisted the person with MS were significantly linked to positive perceptions of accomplishment. Conversely, the caregiver’s perception that assisting the person with MS was emotionally draining, a spousal relationship, and caregiver education levels were significantly associated with negative perceptions of accomplishment. 
Conclusions: Health professionals treating people with MS and their caregivers should be sensitive to the impact caregiving has on the emotional needs of caregivers and to the unique support needs of spousal caregivers. Health practitioners also should be sensitive to the variety of benefit-finding themes expressed by caregivers to facilitate the caregivers’ efforts to discover gains in their experiences assisting people with MS, such as perceptions that caregiving provides a sense of accomplishment.
“Being a carer is one of the most stressful occupations on the planet; informal care giving is usually a 24/7 job. The lack or withdrawal of resources with budget cuts is making matters worse; on the NHS coal face we are seeing things getting worse. Respite care is something all carers deserve.”

“Finding some research into care giving that focuses on a sense of accomplishment is refreshing.”

“Are you aware that when NICE looks at the cost-effectiveness of DMTs it does not take into account the costs of caring for MS’ers or the loss of income arising from a spouse or family member having to give up work to look after someone with MS. NICE only looks at direct costs to the NHS; this is a serious problem as a very expensive DMT that may cure MS may not cut the mustard with such a high hurdle to get over. This is why we need to lobby the government to allow NICE to include indirect or societal costs in their cost-effectiveness assessments.”

One thought on “Caregiver perceptions of accomplishment from assisting MS’ers”

  1. A good reminder of how MS not only affects those afflicted by it, but also loved ones etc. Given that the medical profession can't offer anything for those with progressive disease – really need to plan ahead. I decided early on that before my other half became a carer, or I became an embarrassment to my children I'd make an early exit. I see Debbie Purdy on TV and think 'no thanks'. Hopefully, I have a number of years a head (working etc). When I hit the threshold which I have set – thank Heavens for Dignitas. Real pity there's no treatment for progressive MS – stopping progression would change the lives / outlook for so many. So thankful that my plan will mean that none of my loved ones will suffer from the stress caused by caring.

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