Primary Support Persons for Individuals who are Visually Impaired: Who they are and the Support they Provide

Abstract

As proportion of older adults in U.S. population grows, prevalence of visual 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 vision that results is expected to double within 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 support person, who may be a family member or friend who assists with all day-to-day activities. Despite research on 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 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 will increase as [the] prevalence [of visual impairment] increases ... due to aging population. The study reported here sought to provide some preliminary data on experiences of primary support persons of individuals who are visually impaired. BACKGROUND AND SIGNIFICANCE Research related to experience of visual has focused mainly on 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 quality of social relationships, not quantity of social network members, that was most important for functioning and well-being of these older adults. Adaptation to visual was better in older adults who reported receiving high-quality support. However, McIlvane and Reinhardt did not measure type or amount of support activities that these elder adults received. Without this information to describe context and extent of needed support, it is difficult to generalize findings to other populations and situations. Bernbaum, Albert, Duckro, and Merkel (1993) found that diabetes-related visual was a major stressor in marital relationships. They noted that regardless of length of pre-existing relationship, greatest risk to marriage occurs soon after visual impairment (p. 676). In their sample, of couples who were in a committed relationship at time of onset of one partner's visual impairment, 50% were later separated; mean amount of time from onset of visual 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 demographic and social characteristics of primary support persons of individuals who are visually impaired? (2) What support activities are provided by primary support persons, and how much time per week is spent doing these activities? and (3) How do these primary support persons score on 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 primary support persons for individuals who were visually impaired was recruited for 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 was reported to be most disabling or burdensome condition requiring support. …