Research Article: The use of informal care by people with vision impairment

Date Published: June 7, 2018

Publisher: Public Library of Science

Author(s): Ana Patricia Marques, Antonio Filipe Macedo, Laura Hernandez-Moreno, Pedro Lima Ramos, Thomas Butt, Gary Rubin, Rui Santana, Alvaro Rendon.


To estimate and characterize the use of informal care by people with vision impairment in Portugal.

A total of 546 visually impaired individuals were recruited from Portuguese hospitals. Clinical information was obtained from medical records, socio-demographic details and informal care use were collected during face-to-face interviews. In addition, participants responded to a functional vision questionnaire (activity inventory) to assess their visual ability. Logistic regression was used to determine independent factors associated with informal care use and linear regression was used to determine independent predictors of intensity of informal care use.

Informal care was reported by 39.6% of the participants. The probability of reporting informal care was higher in non-married, those with comorbidities, with lower visual ability and worse visual acuity. The median number of caregivers’ hours per year was 390 (mean = 470; 95%CI = 488–407), which represent a median opportunity cost of €2,586. Visual ability was the only independent predictor of number of hours of informal care received.

Informal care was frequently used by individuals with impaired vision. Improving visual ability of people with impaired vision when performing valued activities may reduce the burden of visual loss at personal and societal level. This could be achieved with person-centred visual rehabilitation.

Partial Text

Vision impairment puts a burden on individuals, families and society. People with impaired vision require more informal care to perform activities of daily living, have more difficulties with mobility, have increased risk of falls and are more likely to require long term care than persons without vision impairment [1–4]. Informal care is generally defined as “help provided to older and dependent persons by non-professional individuals such as, a spouse, parent, other relative, neighbour or friend, in a wide variety of activities and with no payment associated” [5, 6]. Some factors such as age, type of activities, type of disability and severity level can influence the demand for informal care [5, 7]. In addition, it can be influenced by socio-cultural aspects such as family structures, levels of income per capita and availability of formal long-term care systems [5]. In 2007 the Portuguese minister of health implemented a national network of integrated care to provide health and social support including long term care. Visually impaired persons may have access to the national network of integrated care when they meet the access criteria. Nevertheless, access is difficult due to the limited capacity of the network and in some cases, due to the co-payment associated. Therefore, in Portugal, long-term care for people with impaired vision remains mostly informal, that is, provided by relatives or friends.

A total of 546 participants were included in this study, from those 216 (39.6%) reported informal care needs. The sample comprised a high percentage of older individuals, 50% (n = 275) were older than 65 years. The most common causes of vision impairment were: diabetic retinopathy, age-related macular degeneration (AMD), glaucoma and other retinal disorders and detachments. Participants were divided in 2 groups: “users” and “non-users” to identify sociodemographic and clinical independent predictors of the use of informal care. We compared the distribution of cases, between groups, according to several categories. These results are summarized in Table 2. The proportion of women and participants with comorbidities was higher in the users group. The percentage of married individuals was higher in the non-users group.

In this study, we quantified and characterized the use of informal care in a sample of 546 individuals with impaired vision. Informal care was reported by 39.6% of the participants requiring, each requiring a median of 390 hours of informal care per year. Based on the median values, that corresponds to an estimated 92,000 hours per year for our 216 users. The use of informal care was influenced by marital status, comorbidities, visual ability and acuity. The intensity of use of informal care was negatively associated with visual acuity. However, lower visual ability was the only predictor of higher informal care utilisation intensity after controlling for age, gender and severity of vision impairment.




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