Abstract
Purpose :
Caregivers play a vital role in the lives of individuals with vision loss. Caregiving is a far-reaching issue with one in four Canadians acting as a caregiver at some point in their life. This study aims to better understand the experiences of people who care for and support people living with vision loss with a particular focus on caregiver mental health and wellbeing.
Methods :
This mixed method study comprised an online survey of Canadians who provide or have provided assistance, care or support to someone living with vision loss. This survey was developed in collaboration with a working group of caregivers who shared their experiences and perspectives. The online survey included questions about demographics, caregiving roles and responsibilities and impact on personal well-being, mental and physical health, and finances. Participants were recruited through Fighting Blindness Canada’s database, social media, newsletters and dissemination by other not-for-profit organizations in both the vision loss community and caregiving organizations and groups.
Results :
Between May to July 2022, 118 individuals (mean age = 63.1; male = 23.7%, female 75.4%) participated in our survey. Respondents identified as caring for their spouse/partner (31.4%), child (29.7%), parent (17.8%), sibling (6.8%), friend (3.4% ) and other (11%). Respondents help with multiple activities for the person they care for, including travelling to and participating medical appointments and running errands. More than half of respondents feel mental and physical stress due to their role as a carer, revealing a heavy personal burden. While over 70% of respondents feel emotionally and practically supported at least sometimes, 43% of respondents did not feel that their needs as a carer were considered by medical professionals.
Conclusions :
This study paints a detailed picture of the experiences of carers in the vision loss community in Canada, including how caregiving impacts their ability to work, their mental and physical health, their personal wellbeing, and experiences within the medical system. Reflecting on this data will help better support caregiver needs and understand how they can best be included in patient care.
This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.