On June 14th of this year, Northwest Hills Eye Care held it’s first support group for our low vision patients and their families. Sharing this information with prospective patients and visitors, I was often asked about the purpose of the support group. The short answer to this question is whatever our patients need it to be. I looked to the literature to see what has been researched about low vision support groups. Most of the research involves support groups for other diagnoses and contexts, but it was helpful in planning what I hope to be a sustaining support group that meets the needs of our patients.

Most of the literature focuses on support groups for other diagnoses, however it is valuable information when considering factors that would be important for our patients and families. In an article examining participation factors, support group attendance was influenced by a desire to gather and share information about their diagnosis, to share knowledge with the group, share experiences with other families, and social interaction. These groups expressed the desire to talk about interventions, coping and caregiving factors, as well as general information related to the group topic (Purk, 2004). Specific for low vision support groups, study participants identified interests related to interacting with other low vision individuals, becoming more confident, staying current and active in their surroundings, and helping others as motivating factors influencing participation in the group (Digsby-Schoellig, 2010).

Recently, we sent out a survey to gather more information about topics and factors that could affect participation in the support group. A big thank you to everyone who participated! Our results were supported by what I found in the literature. Eighty-four percent of those who answered the survey were interested in participating in the support group. Prospective participants ranged in age from 5 to over 70 years of age. Topics of interest include: disease education, guest speakers, social activities, community resources, transportation and travel, orientation and mobility, self-care topics, low vision education events, mental health issues, leisure exploration, exercise and wellness, and low vision in conjunction with another disease/disability, reading strategies, and advances in research. Other presentation formats such as webinars, zoom, and email were supported in addition to the face-to-face format. Other feedback included factors related to advocacy and volunteering to speak to the group, networking opportunities, and coping with visual deficits. 

Our first meeting was attended by a handful of patients experiencing varied diagnoses. Even with these differences, all found common experiences and shared insightful information with the group. We hope this group will continue to grow in size but also grow as a shared resource for other patients and others in the community. Starting in September, we will have our first support group meeting for our younger, school-age patients who may have very different needs as they transition towards independence. We are incorporating your feedback into the topics and speakers we want to incorporate into our support group meetings. I look forward to getting to hear your experiences and learning from your knowledge in future support groups.

References:
Purk, J.K. (2004). Support groups: Why do people attend? Rehabilitation Nursing, 29 (2), 62-67.
Digsby-Schoellig, S. (2010) Sharing in the journey: Low vision support groups. OT Practice, 15 (2), 17-19.