What support is beneficial for caregivers of individuals with vision impairment?
Jamie EnochChristine M DickinsonAhalya SubramanianPublished in: Clinical & experimental optometry (2021)
Previous studies and reviews have documented the stress and challenges that may be associated with providing informal care for individuals with vision impairment (IVI). This scoping review was therefore conducted in order to synthesise published literature about forms of support which may benefit the informal caregivers of both adults and children with vision impairment (VI), and to identify research gaps in the support available for this population. A systematic literature search was carried out using CINAHL, Medline, PsycINFO and PsycARTICLES, followed by citation tracking. A total of 23 published studies met the eligibility criteria and were included in the review. The included studies focused on: exploring caregiver support needs (8/23); novel interventions supporting caregivers of IVI (10/23); evaluating usual care (2/23); and exploring how treatment for IVI directly impacts the caregiver (3/23). Overall, support for caregivers of IVI is a relatively new research topic, with no eligible studies identified before 1999. Twelve of the 23 studies (52%) focused on support for caregivers of adults with VI, while 11 (48%) focused on support for caregivers of children with VI. The studies illustrate that support groups may generally help to improve caregivers' knowledge and awareness of VI, although benefits for emotional wellbeing are more modest. Support interventions for parents of children with VI appear to reduce stress effectively; however, evidence regarding the value of interventions for caregivers of adults with vision impairment is less clear, partly due to small samples and a lack of standardised, comparable outcome measures. Caregivers often express a need for better information about the condition of the IVI, even when information is apparently available. Further research is required comparing the benefits of different support modalities for caregivers of people with VI over longer follow-up periods.