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Stroke caregivers happiest when they tend to their own needs too

By Shereen Jegtvig

NEW YORK (Reuters Health) - People taking care of a family member who's had a stroke are happier when they maintain control of their own lives and continue to enjoy their interests and hobbies, according to new Canadian research.

"In the caregiving field, a lot of the studies have focused on more negative outcomes, like burden or depression and things like that, but when you actually speak with family caregivers they say, 'You know, it's not all that bad,'" Jill Cameron told Reuters Health.

Cameron, who led the new study, is a researcher in the Department of Occupational Science and Occupational Therapy in the Graduate Department of Rehabilitation Science at the University of Toronto.

"There are some very good aspects to helping your family member and providing care, so we wanted to do a study that tried to emphasize some of the positive things and then try to understand what the factors that contributed to caregivers really being happy in the caregiving role are," Cameron said.

About 800,000 people in the U.S. have a stroke each year and it's a leading cause of disability, according to the Centers for Disease Control and Prevention. The stroke survivors' family members often become the primary caregivers.

Cameron and her colleagues wanted to see what helps to keep caregivers happy so they can sustain their role over the long term.

The researchers enrolled 399 people from Toronto and London, Ontario, and Montreal, Quebec, who were caring for a family member that had survived a stroke. The caregivers were mostly women (69 percent) and most were married to the person they were caring for (70 percent).

The researchers used questionnaires to assess the wellbeing of the caregivers.

They found that caregivers reported more psychological wellbeing when the stroke survivors they cared for had better cognitive function, less depression and when the strokes were more severe. The happiest caregivers tended to be older and in good physical health.

Caregivers were also happiest when they provided more assistance to the stroke survivor, maintained their own activities, believed that they could gain personally by providing care and felt they still had control over their own lives.

The researchers followed up with 80 of the caregivers two years later and found that psychological wellbeing remained stable after two years, they report in the journal Stroke.

Cameron said it's important to recognize that stroke doesn't just cause physical disability, it also affects the victim's mental health as well as cognitive abilities and the ability to communicate with people.

"I think those things are the things that families are probably struggling with a little bit more," she said. "They struggle more with the cognitive and emotional side than they do with the caring for somebody who has a physical disability."

The American Stroke Association offers tips for caregivers here: http://bit.ly/1ktqVB9

Cameron and her colleagues acknowledge in their report that they only looked at caregivers of family members who had mild to moderate strokes and they collected no information on the caregivers' psychological states before they became caregivers.

So it's not clear if caregiving resulted in positive changes in wellbeing or if the participants were more likely to become caregivers because they had better feelings of wellbeing in the first place.

"The most interesting finding for me was that when somebody's caring for somebody post stroke - which comes on very quickly - typically, family members drop everything and they really just focus on the person with the stroke," Cameron said.

"I think that's important early on in the illness, but later on family members have to remember that they have their own lives and if they can engage in activities that are of value to them while they're also taking care of their caregiving responsibilities - it's actually quite good for them," Cameron said.

Cameron also said that having better access to support from different community organizations or community groups can help caregivers deal with their situation.

"Anything that helps them balance all these responsibilities in a positive way can ultimately be good for the caregivers," Cameron said.

Nan Greenwood said she appreciates the timeliness of the new study.

"For far too long, research on carers of people with stroke has focused on the negative aspects of the role ignoring evidence of positive aspects of the experience," she told Reuters Health in an email.

Greenwood is a reader in Health and Social Care Research at St George's University of London and Kingston University, UK. She was not involved in the study.

"The emphasis on 'carer burden', a vague, poorly defined, all-encompassing concept, has provided a picture of carers as individuals with a poor quality of life in a role with no personal satisfaction," Greenwood said.

She explained that this negative image has been perpetuated in research because caregivers are usually only asked about the challenges and the adverse impacts of the role.

Greenwood said that much of the new study supports earlier research, although the finding of better wellbeing among caregivers supporting survivors of more severe strokes is more unusual.

"The association of gaining satisfaction from caring, mastery, maintaining valued activities and psychological wellbeing are important aspects of Cameron's study and open up important, practical means of encouraging carers to sustain or improve their wellbeing," Greenwood said.

She wondered if the caregivers' sense of mastery was a key to their wellbeing.

"Being a carer can lead to a sense of loss of autonomy for both carers and stroke survivors and enhancing their autonomy may be crucial here," Greenwood said.

Source: http://bit.ly/QFyxUh Stroke, online March 20, 2014.

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