The use of informal care by people with vision impairment.
Ontology highlight
ABSTRACT: Purpose
To estimate and characterize the use of informal care by people with vision impairment in Portugal.Methods
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.Results
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.Conclusions
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.
SUBMITTER: Marques AP
PROVIDER: S-EPMC5991749 | biostudies-literature | 2018
REPOSITORIES: biostudies-literature
Publications
The use of informal care by people with vision impairment.
Marques Ana Patricia AP Macedo Antonio Filipe AF Hernandez-Moreno Laura L Ramos Pedro Lima PL Butt Thomas T Rubin Gary G Santana Rui R
PloS one 20180607 6
<h4>Purpose</h4>To estimate and characterize the use of informal care by people with vision impairment in Portugal.<h4>Methods</h4>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. Logis ...[more]
Similar Datasets
Project description:ImportancePreventive care is associated with decreased morbidity and mortality among older adults. Vision impairment may be a barrier to accessing care and health promotion information and therefore may contribute to decreased preventive care uptake.ObjectiveTo examine the association between self-reported vision impairment and uptake of preventive care services (ie, breast and colon cancer screenings and influenza and pneumococcal vaccinations).Design, setting, and participantsCross-sectional study using the 2015 and 2018 National Health Interview Survey (NHIS) and 2016 and 2018 Behavioral Risk Factor Surveillance System (BRFSS) data, national surveys of US residents conducted through in-person household interviews in NHIS, and state-based telephone interviews in BRFSS. Participants included respondents 50 years and older based on eligibility for each preventive care service examined.ExposuresVision impairment, defined as self-reported trouble seeing, in NHIS, and self-reported blindness/serious difficulty seeing in BRFSS.Main outcomes and measuresSelf-reported uptake of breast cancer screening (women aged 50-74 years), colon cancer screening (aged 50-74 years), influenza vaccination (50 years and older), and pneumococcal vaccination (65 years and older). Multivariable regression models adjusted for relevant confounders, including age, were used to examine the uptake of each preventive care service by vision impairment status.ResultsAmong NHIS participants, older US individuals with vision impairment (prevalence between 14.3% and 16.3% in the different age groups; n = 12 120-29 654) were less likely to report breast cancer screening (odds ratio [OR], 0.82; 95% CI, 0.71-0.96) and colon cancer screening (OR, 0.89; 95% CI, 0.79-0.99) but not influenza (OR, 1.06; 95% CI, 0.97-1.15) and pneumococcal vaccination (OR, 1.03; 95% CI, 0.91-1.16), as compared with their counterparts without vision impairment. In BRFSS (n = 228 649-530 027), those with vision impairment (5.9%-6.8%) were less likely than those without vision impairment to report breast cancer screening (OR, 0.67; 95% CI, 0.59-0.75), colon cancer screening (OR, 0.70; 95% CI, 0.65-0.76), and pneumococcal vaccination (OR, 0.89; 95% CI, 0.81-0.99) but not influenza vaccination (OR, 0.95; 95% CI, 0.89-1.00).Conclusions and relevanceOlder Americans with vision impairment may be less likely to use cancer-related preventive services as compared with their counterparts without vision impairments. These findings suggest that interventions to improve access to health information and health care services for individuals with vision impairment may be needed to improve cancer screening among this population.
| S-EPMC7596680 | biostudies-literature
Project description:ObjectiveTelerehabilitation for individuals with vision impairment aims to maintain maximum physical and/or psychological functioning through remote service delivery. This review aims to describe the type of telerehabilitation services available to people with vision impairment and summarise evidence on health-related outcomes, well-being and cost-effectiveness.DesignScoping review.Data sourcesCINAHL Plus, MEDLINE, PsycARTICLES, PsychINFO, Embase, PubMed, HMIC and Ovid Emcare were searched, without date restrictions up to 24 May 2021. Charity and government websites, conference proceedings and clinical trial databases were also examined.Eligibility criteriaEligible studies evaluated benefits of telerehabilitation services for adults with vision impairment. Studies were excluded if they were not available in English, or focused on distance learning of visually impaired students.Data extraction and synthesisTwo independent reviewers screened articles and extracted data. A risk of bias analysis was performed.Outcome measuresMeasures of benefit included performance-based assessment, patient-reported outcomes and cost-effectiveness.ResultsOf 4472 articles, 10 eligible studies were included. Outcomes addressed patient satisfaction (n=4;33.3%), quality-of-life, activities of daily living and well-being (n=4;33.3%), objective visual function (n=2;16.6%) and knowledge relating to ocular symptoms (n=1;8.3%). Two studies addressed multiple outcomes. Cost-effectiveness was addressed in one article (8.3%). Patients were generally satisfied with their experiences, which had a range of positive benefits on functional and quality-of-life outcomes in areas relating to daily activities (eg, reading, making phone calls). Telerehabilitation allowed patients to undertake vision optimisation training to prevent vision deterioration. Grey literature indicated that there are no completed clinical trials relating to low vision telerehabilitation. Charity services had implemented digital skills training to help beneficiaries communicate remotely.ConclusionWhile acceptability of telerehabilitation was mostly high, limited real-world data are available which raises questions around the long-term desirability of this approach. Further trials are needed to evaluate telerehabilitation using a robust set of outcome measures.Prospero registration numberCRD42021254825.
| S-EPMC9345072 | biostudies-literature
Project description:PurposeTo explore the psychometric properties of the Impact of Vision Impairment (IVI-28) and Night Vision Questionnaires (NVQ-10) among people with intermediate age-related macular degeneration (iAMD).MethodsBaseline responses were collected from 288 participants (aged 50-88 years, 74% female) in the Laser intervention in Early stages of Age-related macular Degeneration (LEAD) study in Australia and Northern Ireland. Psychometric properties (discrimination, ordering of thresholds, person separation, item miss-fit, and differential item functioning according to sex) were explored using grouped rating scale and partial credit models. Spearman's correlation was estimated to assess the association with measures of visual function (mean mesopic microperimetric sensitivity, best-corrected visual acuity, low-luminance visual acuity, and low-luminance deficit). The psychometric properties were then explored following recalibration of the instruments.ResultsIn this homogenous population, ceiling effects caused by relatively high levels of functional vision were evident for both instruments. The IVI-28 and NVQ-10 displayed suboptimal discrimination between levels of functional vision in iAMD and poor targeting among people with iAMD. The correlation between ability scores and measures of visual function was mild. In general, the NVQ-10 showed superior psychometric properties to the IVI-28 among these participants. No significant improvement in reliability could be gained following recalibration.ConclusionsBoth instruments were designed for populations with more severe visual loss and poorly discriminate in this cohort of iAMD.Translational relevanceNew instruments that can capture the subtle changes in functional vision that occur early in AMD are required to aid evaluation of emerging interventions for iAMD.
| S-EPMC6753972 | biostudies-literature
Project description:PurposeMany of the UK's 2.5 million individuals living with vision loss receive support from relatives or friends (so-called 'informal caregivers'). However, there is limited understanding of how caregivers of people with visual impairment (PVI) are, or feel, supported by UK healthcare/statutory services and charities. This exploratory study was conducted to explore caregivers' experiences and their suggestions for enhancing support.MethodsParticipants self-identifying as UK-based caregivers of PVI (N = 100) volunteered to undertake an online survey, distributed through charity partners. The survey was comprised of the Client Satisfaction Questionnaire-8 (CSQ-8, a validated, self-report measure of satisfaction with support services), Likert-type questions and two open-ended, free-text questions. Interview participants (N = 22) were then selected from survey respondents, and semi-structured interviews were conducted to focus on caregivers' ideas for improving support. The Framework Method was used for inductive analysis of the free-text question responses and interview data.ResultsThe mean (SD) CSQ-8 score was 21.60 (7.2), with no significant differences by demographic, relationship or vision-related factors, likely limited by the small subgroup sizes. Qualitative data demonstrated the heterogeneity of participating caregivers' experiences, highlighting the importance of personalised support for caregivers. Many participants advocated enhancing informational, practical, emotional and social support for caregivers, and stressed the importance of accessible services and consistent points of contact to turn to for support and advice.ConclusionsAlthough our sample was arguably better connected to support services than the general caregiver population, this study identified concrete suggestions to improve practical, emotional and peer support for caregivers of PVI.
| S-EPMC9320821 | biostudies-literature
Project description:Vision and hearing impairments have long been recognised as modifiable risk factors for delirium.[1,2,3] Delirium in critically ill patients is a frequent complication (reported as high as 60% to 80% of intensive care patients), and is associated with a three-fold increase in mortality and prolonged hospital stay.[1] Guidelines by the UK Clinical Pharmacy Association recommend minimising risk factors to prevent delirium, rather than to treat it with pharmacological agents which may themselves cause delirium.[4] To address risk factors is a measure of multi-system management, such as sleep-wake cycle correction, orientation and use of vision and hearing aids, etc.[5] We designed an audit to survey the prevalence and availability of vision and hearing aids use in the intensive care unit (ICU) of one university hospital. The baseline data demonstrated a high level of prevalence and low level of availability of vision /hearing aid use. We implemented changes to the ICU Innovian assessment system, which serves to remind nursing staff performing daily checks on delirium reduction measures. This has improved practice in promoting vision and hearing aids use in ICU as shown by re-audit at six month. Further amendments to the Innovian risk assessments have increased the rate of assessment to 100% and vision aid use to near 100%.
| S-EPMC4645874 | biostudies-other
Project description:Background and purposeThe caregiving's impact on informal carers' quality of life and gender-based stereotypes make older individuals' informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers' experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020.Design and methodsThe systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework.ResultsThis review produced two analytical themes, the impact of gender on the caregivers' labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers' experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers' healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers' negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men's and women's mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role.Conclusion and implicationsTransgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people's care.
| S-EPMC8306003 | biostudies-literature
Project description:BackgroundHearing and vision loss in older people has been proven to affect physical and mental health and increase the speed of cognitive decline. Studies have demonstrated that certain practices and improved staff knowledge increase the effective care of residents' ears and eyes, yet it is not known which practices are being implemented in care homes. This study aimed to identify the gaps in staff knowledge regarding hearing and vision difficulties in older residents, and which practices known to improve ear and eye care in older care home residents are not commonly implemented in care homes in England.MethodsThis study used a cross-sectional survey design. Survey questions were informed by the existing literature and were focused on practices, staff knowledge, and other aspects that have shown to affect residents' hearing and vision care. A convenience sample of care home staff were recruited from care homes across England between November 2018 and February 2019 via email and in paper format. Descriptive statistics and Chi-Square analysis were applied to identify the factors influencing the care being provided to care home residents.ResultsA total of 400 care home staff responded from 74 care homes. The results revealed that less than half of staff respondents reported to use screening tools to identify hearing (46%) and vision impairments (43.8%); that care homes rarely have access to other assistive devices for hearing (16%) and vision loss (23.8%), and that audiology services do not regularly assess care home residents (46.8%). A majority of staff who responded were not confident in ear and eye care. Responses were found to be influenced by the respondents' job role, length of time working in care homes and also the care home type. Findings confirmed a lack of standardised practice and the importance of shared communication for promulgation of best practice.ConclusionThis study has identified that some practices known to facilitate ear and eye care are not commonly applied in a sample of English care homes. It has also shown that care home staff knowledge of ear and eye care is inconsistent. The information derived from this survey can be used to inform guidelines for best practice and inform needs for future research.
| S-EPMC7791835 | biostudies-literature
Project description:BackgroundThe COVID-19 pandemic has transformed how people seeking to reduce opioid use access treatment services and navigate efforts to abstain from using opioids. Social distancing policies have drastically reduced access to many forms of social support, but they may have also upended some perceived barriers to reducing or abstaining from opioid use.ObjectiveThis qualitative study aims to identify informal coping strategies for reducing and abstaining from opioid use among Reddit users who have posted in opioid-related subreddits at the beginning of the COVID-19 pandemic.MethodsWe extracted data from 2 major opioid-related subreddits. Thematic data analysis was used to evaluate subreddit posts dated from March 5 to May 13, 2020, that referenced COVID-19 and opioid use, resulting in a final sample of 300 posts that were coded and analyzed.ResultsOf the 300 subreddit posts, 100 (33.3%) discussed at least 1 type of informal coping strategy. Those strategies included psychological and behavioral coping skills, adoption of healthy habits, and use of substances to manage withdrawal symptoms. In addition, 12 (4%) subreddit posts explicitly mentioned using social distancing as an opportunity for cessation of or reduction in opioid use.ConclusionsReddit discussion forums have provided a community for people to share strategies for reducing opioid use and support others during the COVID-19 pandemic. Future research needs to assess the impact of COVID-19 on opioid use behaviors, especially during periods of limited treatment access and isolation, as these can inform future efforts in curbing the opioid epidemic and other substance-related harms.
| S-EPMC8896559 | biostudies-literature
Project description:BackgroundHearing and vision (sensory) impairments are highly prevalent in people with dementia (PwD) and exacerbate the impact of living with dementia. Assessment of sensory or cognitive function may be difficult if people have concurrent dual or triple impairments. Most standard cognitive assessment tests are heavily dependent on having intact hearing and vision, and impairments in these domains may render the assessments unreliable or even invalid. Likewise, dementia may impede on the accurate reporting of symptoms that is required for most hearing and vision assessments. Thus, there is an urgent need for hearing, vision and cognitive assessment strategies to be adapted to ensure that appropriate management and support can be provided.ObjectiveTo explore the perspectives of PwD and the care partners regarding the need for accurate hearing, vision and cognitive assessments.MethodsWe conducted focus groups and semi-structured interviews regarding the clinical assessment for cognitive, hearing and visual impairment. Participants (n?=?18) were older adults with mild to moderate dementia and a sensory impairment as well as their care partners (e.g. a family member) (n?=?15) at three European sites. The qualitative material was analysed according to Mayring's summative content analysis approach.ResultsParticipants reported that hearing, vision and cognitive assessments were not appropriate to the complex needs of PwD and sensory comorbidity and that challenges in communication with professionals and conveying unmet needs and concerns by PwD were common in all three types of clinical assessments. They felt that information about and guidance regarding support for the condition was not adequate in the assessments and that information sharing among the professionals regarding the concurrent problems was limited. Professionals were reported as being concerned only with problems related to their own discipline and had limited regard for problems in other domains which might impact on their own assessments.ConclusionsThe optimal assessment and support for PwD with multiple impairments, more comprehensive, yet easy to understand, information regarding these linked to conditions and corrective device use is needed. Communication among health care professionals relevant to hearing, vision and cognition needs to be improved.
| S-EPMC6889573 | biostudies-literature
Project description:ObjectiveTo identify the risk factors for significant depressive symptoms in people with visual impairment in England and Wales to provide information on who is most at risk and to whom support services could be targeted in future.DesignA cross-sectional study using baseline data from a pragmatic randomised controlled trial.Setting and participants990 participants aged 18 or over attending 1 of 14 low-vision rehabilitation primary care optometry-based clinics in South Wales or two hospital clinics in London.Outcome measureA score of ≥6 on the Geriatric Depression Scale-15 was classed as clinically significant depressive symptoms.ResultsIn a multivariable logistic regression model, significant depressive symptoms were associated with age (adjusted OR (AOR)=0.82, 95% CI: 0.66 to 0.90, p<0.001), ethnicity (AOR non-white compared with white=1.72, 95% CI: 1.05 to 2.81, p=0.031), total number of eye conditions (AOR for two vs one condition=0.98, 95% CI: 0.67 to 1.43; three or more vs one condition=0.34, 95% CI: 0.15 to 0.75, p=0.026), self-reported health (AOR for excellent vs poor=0.01, 95% CI: 0.00 to 0.12; very good vs poor=0.06, 95% CI: 0.03 to 0.13; good vs poor=0.14, 95% CI: 0.08 to 0.24; fair vs poor=0.28, 95% CI: 0.18 to 0.46, p<0.001) and self-reported visual functioning (AOR=1.45, 95% CI: 1.31 to 1.61, p<0.001).ConclusionYounger age, a non-white ethnicity, fewer eye conditions and poorer self-reported health and visual function are risk factors for significant depressive symptoms in this population.Trial registration numberISRCTN46824140; Pre-results.
| S-EPMC6340416 | biostudies-literature