There are truly two sides to the caregiving story. Although the situation may be the same, these caregivers experienced both positive (successes) and negative (problems) aspects as a result. Consequently, the themes for the problems and successes are also similar. For example, looking for normal was seen as a problem in that caregivers wished things were as they once were; however, over time, they were able to find a new sense of normal and come to a fresh balance in their lives and appreciation for what they had. In fact, these caregivers expressed more successes during the first year of caring than problems.
At 3 months, the caregivers were dealing with problems that resulted in basic system maintenance
. Similar to King and Semik,10
they were very focused on the care recipients’ function and tasks needed to compensate for the loss of abilities. In general, the caregivers described problem solving in terms of what the care recipient was doing or needing. Caregivers were also working on initial system changes
in trying to find the time and means to manage the impact of the stroke. They expressed worries related to being overwhelmed, not having enough time for self, and being concerned about the care recipient’s progress and safety. At 6 months, the problem emphasis had moved from tasks to behavioral issues as caregivers tried to adjust to the daily hassles of living and dealing with stroke. The moods, fears, and worries shared showed that the reality of the situation had “hit home” as caregiver and care recipient now struggled together. The caregivers were working toward adjusting their lives, dealing with uncertainty and adapting to changes as O’Connell and Baker20
also reported, and dealing with the issues of individuation
, as they learned and grew from the experience and faced the reality of caring over time. Caregivers continued to describe their worries and concerns related to having time to care for self, sharing frustrations, and being overwhelmed, as they dealt with the care recipients’ progress or lack thereof and their moods, memory issues, and depression. At 9 months, the caregivers shared care recipients’ behaviors that were frustrating and additional concerns about personal safety or unsafe actions. By 12 months, the caregivers described a normalization of their lives, incorporating whatever residual needs still existed for the care recipient. This may reflect an acceptance of the situation or an achievement of successes, such as learning the role of caregiver.9
Caregivers were in a process of dealing with letting go of trying to control the situation, as they struggled with the care recipient in daily life events. The struggles reflected system maintenance
and realistic movement toward coherence
within the family system.
At 3 months, successes dealt with the care recipients’ improved function of walking, physical balance, and ability to do things or therapy going well. At 6 months, even though the emphasis remained on the care recipient, there were reports of success in “getting out and doing things together.” At 9 months, there was continued focus on being able to return to society. This was coupled with increased reports of the care recipient being able to do things for themselves. These findings of recognizing the care recipient’s strengths support earlier work by Ferran and associates21
who found that there was a focus on relationships and being together. At 12 months, acceptance and working things out were reported successes. More examples of getting out into the community and having more social successes were shared at this point. Positive outcomes seemed to strengthen relationships.24
These successes support the movement toward working on their relationships and demonstrating individuation
True system change
was not yet achieved as caregivers still tried to maintain what they had. Representative is the comment that one caregiver shared, “Stroke and the (caring) situation have changed my outlook on life…. I can let the small things go, because they can wait.”
In summary, initially the caregivers were concerned with the challenges of new tasks and learning new roles, and they just tried to make it through the day (system maintenance
Successes were seen in terms of the care recipient doing a task or needing less assistance with that task. From that early stage, problems as well as successes reflected managing and creating routines or the care recipient completing therapy treatment. With time, individuation
began as caregivers became confident in leaving care recipients alone and as care recipients were able to do some things on their own. A rebuilding of the relationship between caregivers and care recipients also began, as they moved toward coherence
. Together they went out, participated in familiar or new activities, and began to see a future.25
It is up to the reader to decide if these findings apply to their locales and populations of caregivers. Further research is needed with more diverse locations and cultural groups, as well as with caregivers of individuals with other chronic diseases. Qualitative outcome analysis30
might be useful for building on this study to extend the focus from understanding the experience of caring and the problems and successes of caregivers of stroke survivors to confirming the applicability of clinical strategies.