Eight participants were enrolled in the program, which took place during a 9-week period. One participant left the program after the first visit (Table 2).
Relationship with the care receiver. Overall, caregivers reported good relationships with their care receivers at the start of the intervention. For example, Participant 2 described his relationship with his care receiver as “very loving, caring, mutually joyful and affectionate,” and Participant 6 stated, “My relationship with R is good. We are very close.” There was also an undercurrent of tension within the dyad, as expressed by Participant 1, who described the relationship as “tentative. She has so many problems going on . . . .” A similar response was provided by Participant 6, who, in addition to the previous statement, continued, “In the past month, though, I've had to fuss, because R wants to be more independent.” Participant 4 stated, “He's communicating with me better, and I'm learning to be more understanding in more situations now that he lets me sit in on his doctor visits.” Overall, the predominant theme was that of underlying frustration within a close relationship.
In the final survey, all participants expressed improved relationships with their care receivers. Participant 1 described feeling “a bit more at ease with it all. Having knowledge about her condition has helped her to relax about losing her sight some. By us being aware, she can feel secure about being cared for.” Despite describing the situation as “busy, hectic,” Participant 2 noted that the relationship was “good, close, and caring, for the most part.” Participant 3 reported, “We are like family,” whereas Participant 4 described that her relationship had “very much improved.” Participant 6 stated, “He seems to follow instructions better, so we get along great. I think that it is because he knows or feels that now I am more knowledgeable of his condition.” Participant 7 expressed similar feelings about the effect of the intervention on the care receiver, stating “X is more receptive to our help.” Participant 8 noted improvement in the relationship by stating that it “continues to get better day by day.” Overall, without exception, all participants reported a definite improvement in their relationships with their care receivers at the end of the program, where frustration was replaced with acceptance.
Most challenging part of caregiving. At the start of the intervention, all participants except Participant 3 expressed varying degrees of concern about their care receivers during the past month. This concern was related to care receivers' ability to care for themselves or perform daily activities, such as feeding themselves or getting around safely. Participant 4 articulated that her care receiver was “beginning to not find items on counters, tables, etc., even if I place them in ‘obvious’ positions.” Participant 8 stated, “He can't care for himself like he normally would, when his eyesight was good.”
On the final survey at the end of the intervention, participants focused less on the challenges of caregiving. Participant 1 noted, “It hasn't been very difficult,” and Participant 3 reported, “There has been no difficulty.” Similarly, Participant 7 elaborated, “It is no longer frustrating because through this program I've learned . . . some of the challenges (faced by) a person with low vision.” Two participants noted continued difficulty being patient with their care receivers. Participant 2 provided a detailed explanation of challenges regarding transportation and getting around unfamiliar environments, and Participant 8 simply stated that one of her challenges was “being patient.” Participant 4 described the difficulty she had grasping just how well her care receiver was doing despite having low vision as “being aware of and understanding of how marvelously he is functioning in all of his activities.” Participant 6 expressed a similar sentiment, saying, “The most challenging part was to try to look at the world and function as he does through the simulator.” In summary, at the end of the program, participants expressed less concern for their care receivers than they did at the start of the program, and concern was replaced by a sense of understanding.
Most beneficial part of caregiving. The last question was, “What has been the most beneficial part of caregiving in the past month?” This question was answered in a variety of ways at the beginning of the survey. Participants were rewarded emotionally, as expressed by Participant 1, who stated, “When she is in her good moods, we have fun joking around.” Participant 3 expressed similar sentiments and reported a sense of being rewarded by “helping in emotional needs.” The most prominent theme was that of feeling emotionally rewarded with a sense of closeness by being able to help care receivers and understand their needs.
At the end of the program, many participants listed among the benefits of caregiving their new ability to understand the effect of vision loss on their care receivers as well as their new skills in facilitating occupational performance. Participant 1 stated, “The resources provided will be most helpful,” whereas Participant 4 reported the benefits of “having the new skills and knowledge to help him navigate, especially in unfamiliar areas, without acting or seeming to act condescending.” Participant 6 elaborated, “The beneficial part was to better understand his condition, how he sees, what he sees, and why a simple thing like feeding himself is so challenging.” Overall, the responses indicated a deepened sense of empathy with the care receiver.