Assessing the Role of the Family/Support System Perspective in Patients With Glaucoma

Purpose: To investigate the role of the family/friends support system for patients with glaucoma and their perspective on barriers to effective glaucoma management. Methods: Six focus groups were conducted in 3 geographically and ethnically diverse areas of the United States (Los Angeles, CA; Rochester, MN; Durham, NC) that included 31 participants; 68% (21/31) were family members and friends of glaucoma patients with poor vision and 32% (10/31) were support system individuals of patients with good vision. Content analysis was used to identify important themes. Semiquantitative analysis was used to measure the frequency of each theme. Results: A total of 134 relevant comments were made in the 6 focus groups and 72% of relevant comments were made by individuals providing support for patients with poor vision. Family members and friends mentioned the following areas of concern regarding patients’ glaucoma care: patient education (19.4%), doctor-patient relationship (17.9%), their own lack of involvement in the patient’s medical care (17.2%), frustration with glaucoma and with the patient (14.9%), patient dependency on caregivers (14.9%), patient frustration with the disease (10.4%), and sex differences in coping mechanisms (5.2%). Conclusions: Support system individuals tend to be minimally involved in the patient’s glaucoma status and care. This is especially true for support system members of patients with glaucoma who maintain good vision and those who do not have any other personal experiences with difficulties from glaucoma. Many of these family members express an interest in acquiring more education about glaucoma and becoming more involved in the patient’s glaucoma care.