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To support policymakers in enhancing access to eye care for the population aged 45 years and older in Pakistan, this study aims to identify and quantify the barriers that hinder effective eye care delivery to this group. Additionally, it seeks to explore patients’ experiences with the Sehat Sahulat (health insurance) programme in the context of eye care services.
Background:
Accessible eye care services can reduce avoidable blindness by delivering timely, high-quality interventions. In Pakistan, the lack of primary eye care burdens overcrowded hospitals and combined with economic challenges, limits access for underprivileged populations. To address this, a nationwide health insurance scheme – the Sehat Sahulat programme (SSP) was introduced to reduce out-of-pocket (OOP) expenses and improve healthcare access for economically disadvantaged groups.
Methods:
Using an exploratory sequential mixed methods design, an initial qualitative phase explored participant experiences and identified specific barriers. The qualitative study provided the basis for the development of a customized survey tool. The survey tool was then used in a second phase to obtain quantitative data to capture the magnitude of barriers and costs associated with accessing eye care in Pakistan.
Findings:
Numerous considerable barriers were identified including illiteracy, long travel times, female gender, old age, mobility issues, and costs, all of which limited access to eye care in Pakistan. Awareness surrounding use of the SSP was poor, with the programme seldom used towards eye care costs. This study highlights patient experiences with eye care in urban and rural Pakistan, including enablers and barriers to accessing eye care. Improvements should focus on educating the public on eye health, increasing availability of eye care services in rural areas, improving accessibility within eye care facilities, addressing gender disparities, and reducing costs associated with eye care treatments, potentially through advancement of the SSP.
Empowerment is crucial for eliciting designer empathy. This research explores a distinctive integration of empathic modelling and role-play, termed Empathic Empowerment. Through a qualitative study, this research introduces a novel evaluation system, entitled the Empathic Empowerment Scale, designed to support the optimal level of designer empathy in a situated interaction drawn from habitual user experiences. The goal of this research is to empower designers to create the next generation of human-oriented solutions with enhanced inclusivity and social value, through practical experiences.
Age-related macular degeneration (AMD) is a chronic, progressive eye condition that can affect individuals in later life and lead to loss of central visual function. In this analysis, we aimed to explore the discursive landscape of talk about AMD, drawing on extracts published in peer-reviewed qualitative studies on AMD. Drawing on procedures of qualitative meta-synthesis, we compiled a corpus of raw data extracts from 25 qualitative studies on AMD published in English, largely carried out in high-income countries. Extracts were analysed to identify dominant discourses and key interpretative repertoires (such as recurring metaphors, tropes and figures of speech). We adopted a Foucauldian discourse analytic approach, to consider the implications of dominant discourses, and their associated subject positions, for the subjective experience of living with AMD. Our analysis identified five distinct ways in which AMD was constructed in research participants' talk about experiences of AMD. They included: AMD as a mysterious affliction, linked to biological ageing; AMD as a total loss of independence; AMD as grievous loss; AMD as a condition to be stoically accepted; and – to a more limited extent – AMD as an opportunity for discovery. Drawing on theory from critical disability studies and gerontology, we suggest that the constructions identified are underpinned by broader societal discourses which construct ageing and disability in largely negative, medicalised and individualistic terms. Taking up subject positions within such discourses may compound feelings of isolation, hopelessness and powerlessness. We suggest there may be value in exploring talk about experiences of living with AMD within a broader range of everyday social, relational and environmental contexts.
Subtle visual distortion is also fairly common in the more standard presentation of Alzheimer’s. Visual-spatial perception can be altered, affecting one’s ability to locate an object in space. The inability to recognize faces, prosopagnosia or face blindness, is common even early in Alzheimer’s. In Lewy body dementia, very realistic visual hallucinations are common, often as the first sign of the disease. But what about impaired vision? Does that have any effect on the risk of getting dementia?
Increased rates of visual impairment are observed in people with schizophrenia.
Aims
We assessed whether genetically predicted poor distance acuity is causally associated with schizophrenia, and whether genetically predicted schizophrenia is causally associated with poorer visual acuity.
Method
We used bidirectional, two-sample Mendelian randomisation to assess the effect of poor distance acuity on schizophrenia risk, poorer visual acuity on schizophrenia risk and schizophrenia on visual acuity, in European and East Asian ancestry samples ranging from approximately 14 000 to 500 000 participants. Genetic instrumental variables were obtained from the largest available summary statistics: for schizophrenia, from the Psychiatric Genomics Consortium; for visual acuity, from the UK Biobank; and for poor distance acuity, from a meta-analysis of case–control samples. We used the inverse variance-weighted method and sensitivity analyses to test validity of results.
Results
We found little evidence that poor distance acuity was causally associated with schizophrenia (odds ratio 1.00, 95% CI 0.91–1.10). Genetically predicted schizophrenia was associated with poorer visual acuity (mean difference in logMAR score: 0.024, 95% CI 0.014–0.033) in European ancestry samples, with a similar but less precise effect that in smaller East Asian ancestry samples (mean difference: 0.186, 95% CI –0.008 to 0.379).
Conclusions
Genetic evidence supports schizophrenia being a causal risk factor for poorer visual acuity, but not the converse. This highlights the importance of visual care for people with psychosis and refutes previous hypotheses that visual impairment is a potential target for prevention of schizophrenia.
People with age-related macular degeneration (AMD) can report reduced mental health. There is also evidence that they struggle with daily tasks because of vision loss.
Aims
The purpose of this study was to assess the psychological impact of instrumental activities of daily living on people with simulated AMD.
Method
Twenty-four normally sighted participants completed 12 household tasks, in a simulated home environment, under a moderate-to-severe AMD simulation. Participants’ psychological state was measured through self-report questionnaires and physiological measurements related to anxiety and stress. Tasks were completed twice, under counterbalanced vision conditions (normal and simulated AMD).
Results
Linear mixed models on vision condition (normal versus simulated AMD) and trial order (trial 1 versus trial 2) revealed a significant large negative effect of the AMD simulation on time to complete tasks, and the anxiety, task engagement and distress self-reports (all P < 0.024, all ω2 > 0.177). There were also significant medium-large effects of trial order on time, task incompletion, task errors, and the anxiety and task engagement self-reports (all P < 0.047, all ω2 > 0.130), whereby the results improved during the second attempt at the tasks. No physiological measures were significant (all P > 0.05).
Conclusions
Completing instrumental activities of daily living under an AMD simulation had a negative impact on participants’ self-reported mental state. The observed trial order effects also illuminated how practice with tasks could ease anxiety and stress over time.
Poststroke visual impairment (VI) negatively affects rehabilitation potential and quality of life for stroke survivors. In this cross-sectional observational study, stroke survivors and providers were surveyed to quantify perspectives regarding care for poststroke VI in Alberta, Canada (n = 46 survivors; n = 87 providers). Few patients (35%) felt prepared to cope with VI at the time of discharge from acute stroke and inpatient rehabilitation settings. Less than 25% of stroke survivors, and <16% of providers, felt referral processes were adequate. 95.2% of providers and 82% of stroke survivors advocated for a provincial clinical pathway to improve care quality for poststroke VI.
Much has been written on the theory that congenital blindness might protect against schizophrenia, but proof remains elusive. It has been suggested that visual ability might be associated with schizophrenia in a bell-shaped distribution, with both lifelong absent and perfect vision being protective. Alternatively, ocular aberrations and schizophrenia may share an aetiology. Any neuronal pathology implicated in schizophrenia could affect the retina, since it is an embryological extension of the brain. The retina is more amenable to direct imaging than other parts of the central nervous system and may give unique insights into schizophrenia-associated neuropathology. It is also possible that psychosis causes visual impairment: people with psychotic illnesses are probably not accessing optical care optimally and have higher levels of risk factors for visual loss.
To develop and validate protocols for photographed food record directed to visually impaired people.
Design:
Photographic techniques were established for capturing food images using a smartphone, and written protocols were defined. Thereafter, visually impaired people made photographic records of three standardised meals (breakfast, lunch/dinner, and snack) following the previously developed protocols. These photographs were then evaluated by a panel of experts (nutritionists and photographer) to indicate whether the framing, focus and angle were suitable to identify the food type, food amount and portion size. Agreement between the experts was assessed using Fleiss’ Kappa.
Setting:
Natal, the capital of Rio Grande do Norte, Brazil.
Participants:
Visually impaired people (n 40); nutritionists (n 2); professional photographer (n 1).
Results:
Both protocols obtained a high proportion of satisfactory photos for all the items in the three dimensions investigated. When overall quality was assessed, the experts’ agreement was a substantial that through the images it would be possible to identify the food type and portion size, both for Frontal Photos (k = 0·70 and k = 0·62, respectively) and Aerial Photos (k = 0·68 and k = 0·70, respectively). The degree of agreement that the photos presented a satisfactory global quality was moderate for the Frontal Photo (k = 0·43) and substantial for the Aerial Photo (k = 0·64). Participants who frequently used smartphone-type cell phones obtained better quality images for all these attributes for both protocols.
Conclusions:
The protocols for photographed food record developed for visually impaired people in this study are feasible and present themselves as an alternative strategy to qualitatively assess their dietary intake.
The Charles Bonnet syndrome is characterized by the occurrence of visual hallucinations in elderly people, but without any mental disorders. Two clinical cases are described. An etiological and physiopathological theory is proposed, based on vascular pathology, lack of visual stimulation and a psychodynamic component.
Globally, a high prevalence of obesity and undernutrition has been reported in people with visual impairment (VI) who have reported multi-factorial obstacles that prevent them from achieving a healthy diet, such as having restricted shopping and cooking abilities. The present study is the first to investigate the relationship between VI and dietary consumption using a representative sample size, standardised methods to categorise VI and a detailed analysis of dietary consumption. Ninety-six participants with VI and an age-matched control group of fifty participants were recruited from across the UK. All participants were aged 50 years or over. The participants completed a 24-h food recall for a period of 3 d. The participants also answered questions about their abilities to shop for and cook food as well as their knowledge of healthy eating. The participants with VI in this sample consumed significantly fewer energy content and other nutrients than is recommended for their age group and when compared with an age-matched control group. The participants with VI mainly made food choices irrespective of nutritional value. The results of the present study highlight for the first time that a large proportion of older adults with VI in the UK are undernourished. These results suggest local and government-led initiatives should be implemented to support the diets of older adults in the UK, and these initiatives could include healthy eating workshops, café clubs or skills training and rehabilitation.
To investigate the differential associations between sensory loss and neuropsychiatric symptoms among older adults with and without diagnosed neurocognitive disorder.
Methods:
The sample comprised 1,393 adults (52.3% men) aged between 72 and 79 years from a community-based cohort study. There were 213 cases of mild and 64 cases of major neurocognitive disorders. The main outcome was number of informant reported symptoms on the Neuropsychiatric Inventory (NPI). Sensory loss was defined by visual acuity worse the 0.3 logMAR (6/12 or 20/40) and self-reported hearing problems.
Results:
Clinically relevant NPI symptoms were reported in 182 (13.1%) participants, but no individual symptom occurred in more than 5% of the total sample. Among participants diagnosed with a major neurocognitive disorder, those with any sensory loss had over three times (95%CI: 1.72–11.78) greater rates of NPI symptoms than those with unimpaired levels of sensory functioning. There were no differences in the number of neuropsychiatric symptoms by type of sensory loss, and no additional risk associated with a dual sensory loss compared to a single sensory loss. There was no evidence of an association between sensory loss and number of neuropsychiatric symptoms among cognitively healthy adults.
Conclusions:
The extent to which this association is the result of underlying neuropathology, unmet need, or interpersonal factors is unclear. These findings have significant implications for dementia care settings, including hospitals and respite care, as patients with sensory loss are at increased risk of neuropsychiatric symptoms and may require additional psychosocial support. Interventions to manage sensory loss and reduce the impact of sensory limitations on neuropsychiatric symptoms are needed.
Accessibility to buildings promotes social participation through the application of inclusive design. However, architectural frameworks for constructing accessibility ramps are based on scant scientific evidence. This article presents a statement of established standards for construction criteria for accessibility ramps and makes recommendations from the perspective of inclusive design. A literature review was performed using the databases Medline, OTseeker, PsycINFO, and CINAHL (2000 to 2013), combining keywords referring to: universal accessibility, inclusive design, accessibility ramps, biomechanics, obesity, and disabilities. Non-scientific literature was also explored (e.g. building codes). The fifty-eight articles selected were grouped under five themes: 1) ramps and users; 2) materials and climate; 3) visual reference; 4) "wayfinding"; 5) durability, aesthetics and culture. Recommendations encouraging interdisciplinary practice, pegged to inclusive design, are exhibited (e.g. tracking, tilt, contrast).
There is concern that young people with visual impairment do not leave school adequately prepared for the workplace. Seventy young people from the UK with visual impairment (aged 16–19) took part in semi-structured interviews exploring how they define independence and how they predict they would deal with employment-based problems. Two overarching themes emerged: (1) how active/passive the young people felt they should be in solving problems (active–passive dimension), and (2) to whom (themselves or others) the young person attributed the responsibility for problems and solutions (internaliser–externaliser dimension). The results provide evidence of the importance of teaching young people disability-specific skills at school (an ‘expanded core curriculum’) which aims to maximise young people's independence while giving them a clear understanding of the accommodations to which they are entitled.
The purpose of this study was to analyze self-concept, self-esteem, and other personality traits and psychopathological symptoms in subjects with and without visual impairment. The sample was made up of 90 participants aged 12 to 17: 61 with no impairment and 29 with visual impairment. The ANOVA showed that there were no significant differences in self-concept and self-esteem in the samples, but the visually impaired adolescents scored significantly higher in various psychopathological symptoms as well as in their capacity for kind behavior. The ANOVA revealed no gender differences in any variables in adolescents without visual impairment. However, women with visual impairment scored lower in self-esteem and higher in various psychopathological symptoms. Pearson coefficients revealed negative relations between self-concept/self-esteem and all the psychopathological symptoms, and neuroticism, as well as a positive relation with extraversion. Low psychoticism, high extraversion, and low hostility were identified as predictors of high self-concept.
Objective – To assess competing explanations for the universal preference of mothers to cradle infants on their left side and to propose a relation to hemispheric asymmetry for social attachment and communication behaviour. Methods – A review of observational, experimental, physiological, psychological, neuro-physiological, and neuro-psychological studies, including new findings on the cradling behaviour of mothers with auditory or visual impairments. Results – A significant left-cradling bias is observed in both right- and left-handed mothers which cannot adequately be explained by arguments based on handedness or closer contact to the soothing sound of the maternal heartbeat. Observations of primate behaviour have led to the suggestion that the left-cradling bias may be related to a left visual field (right hemisphere) advantage for monitoring an infant's facial expressions of distress. However, more than just monitoring, cradling subserves the mother's connection with the infant. For that reason, we have suggested that left cradling might be related to a right hemisphere specialisation for emotional communication, i.e. the speech melody, smiles, signals, and stroking which mothers use to interact with their infants. Studies of mother-infant interaction show that the sound of the mother's voice is more soothing when cradling on the left, more stimulating when cradling on the right. Cradling laterality may thus be related to emotional state and behavioural intent. There is also evidence to suggest that left cradling is linked to a special role of the right hemisphere in social attachment behaviour. This function may be disturbed in mothers with postnatal depression who show abnormal right hemisphere activity. Conclusion – Cradling embodies the symbiotic relationship between mother and infant; various lines of evidence support the suggestion that the universal preference of mothers to cradle infants on their left side is related to a right hemisphere dominance for social attachment and communication behaviour.
Background: Dementia and visual impairment are among the most common medical conditions in later life. Almost nothing is known about the experiences and needs of older adults with both conditions.
Method: In this qualitative study using in-depth individual interviews, multiple perspectives were sought through a case-study approach. Fifty-two interviews were conducted: 17 with older adults with visual impairment and dementia, 17 with family caregivers, and 18 with care professionals.
Results: Impaired memory and a lack of visual cues created profound disorientation and distress, which could be manifested in disruptive behavior. Visual hallucinations compounded older adults' disorientation, and caregivers were uncertain about how to manage them. Visual impairments reduced the ability of older adults to perform certain activities safely, while dementia impaired their ability to assess the risks accurately. Concerns about safety prompted family members to limit their relatives' activities even in early stages of dementia. Low-vision services perceived themselves to be ill equipped to manage dementia-related needs, while visual needs were accorded a low priority by dementia services. A lack of joint working by the two services led to an overcautious approach.
Conclusions: The research identified considerable unmet needs and opportunities to improve care. The provision of clear verbal communication and optimized visual inputs is likely to reduce disorientation, distress and agitated behavior, while one-to-one contact is needed to overcome feelings of isolation. Family caregivers require additional respite services and advice on managing hallucinations. Increased sharing of information and skills between mental health and low-vision professionals would help maximize older adults' independence.
By
Koen Devriendt, Centre for Human Genetics, University Hospital Leuven, Belgium,
Nathalie Rommel, Centre for Paediatric and Adolescent Gastroenterology, Women's and Children's Hospital, Adelaide, Australia,
Ingele Casteels, Department of Ophthalmology, University Hospital Leuven, Belgium
Edited by
Kieran C. Murphy, Education and Research Centre, Royal College of Surgeons of Ireland,Peter J. Scambler, Institute of Child Health, University College London
Three systems frequently involved in velo-cardio-facial syndrome (VCFS) are the nephro-urologic and the gastrointestinal systems and the eyes. This chapter discusses the pathogenesis and clinical aspects of these anomalies. It then briefly deals with some other nephro-urological manifestations of VCFS, enuresis, and nephrocalcinosis. The prenatal presentation of uropathies is a special situation. Most cases with a conotruncal heart defect that have been detected antenatally are isolated, but it may be of interest to detect those cases with VCFS. Normal swallowing is usually divided into oral-preparatory, oral, pharyngeal, and esophageal phases. The chapter describes normal feeding and swallowing development as it relates to the feeding pathology seen in infants and children with VCFS. Despite the frequent finding of various ophthalmological manifestations in VCFS, serious ocular involvement is uncommon. It is clear that further research is needed to evaluate the frequency of visual impairment in patients with the VCFS.
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