Primary Support Persons for Individuals Who Are Visually Impaired: Who They Are and the Support They Provide.

As the proportion of older adults in the U.S. population grows, the prevalence of visual impairment related to cataracts, glaucoma, macular degeneration, and diabetic retinopathy will increase as well. According to Friedman, Congdon, Kempen, and Tielsch (2002), "the number of Americans with age-related eye disease and the vision impairment that results is expected to double within the next three decades." Individuals who are visually impaired require various degrees of support and assistance in their daily activities. This assistance is frequently provided by a "primary support person," who may be a family member or friend who assists with all day-to-day activities. Despite research on the experiences of primary support persons for individuals with other types of chronic conditions, such as dementia, stroke, and cancer, there has been little research on the individuals who provide primary support to persons who are visually impaired. It is not clear whether these care givers feel a sense of strain or feel burdened by their role. As Chia et al. (2004, p. 73) noted, "the burden [of caring for persons with] visual impairment will increase as [the] prevalence [of visual impairment] increases ... due to the aging population." The study reported here sought to provide some preliminary data on the experiences of primary support persons of individuals who are visually impaired. BACKGROUND AND SIGNIFICANCE Research related to the experience of visual impairment has focused mainly on the perspectives of individuals who are visually impaired. McIlvane and Reinhardt (2001) found that high-quality support from family members and friends was associated with lower levels of depressive symptoms among 241 elderly patients of a vision rehabilitation services agency. In addition, it was the quality of the social relationships, not the quantity of social network members, that was most important for the functioning and well-being of these older adults. Adaptation to visual impairment was better in the older adults who reported receiving high-quality support. However, McIlvane and Reinhardt did not measure the type or amount of support activities that these elder adults received. Without this information to describe the context and extent of the needed support, it is difficult to generalize the findings to other populations and situations. Bernbaum, Albert, Duckro, and Merkel (1993) found that diabetes-related visual impairment was a major stressor in marital relationships. They noted that "regardless of the length of the pre-existing relationship, the greatest risk to the marriage occurs soon after the visual impairment" (p. 676). In their sample, of the couples who were in a committed relationship at the time of the onset of one partner's visual impairment, 50% were later separated; the mean amount of time from the onset of the visual impairment to separation was 1.6 years. Although both health and vision professionals must address this potential stress to help families cope with visual impairment, research has provided insufficient data and recommendations for such interventions. The research questions for this study were as follows: (1) What are the demographic and social characteristics of primary support persons of individuals who are visually impaired? (2) What support activities are provided by the primary support persons, and how much time per week is spent doing these activities? and (3) How do these primary support persons score on the Caregiver Reaction Assessment (CRA), an instrument that was designed to measure caregivers' burden or strain? (Given et al., 1992). METHOD Sample A purposive, consecutive sample of 28 adults who reported being the primary support persons for individuals who were visually impaired was recruited for the study through a low vision services clinic. The visually impaired individuals had other chronic health problems; however, their primary support persons were recruited if visual impairment was reported to be the most disabling or burdensome condition requiring support. …