Evaluating the impact of information and support for people with nystagmus in the digital age: A patient and carer questionnaire study.

Background: Nystagmus is a disorder of rhythmic, involuntary oscillations of the eyes and can be classified as either infantile or acquired. Whether it occurs in isolation or as a part of other visual or neurological disorders, it causes significant visual dysfunction and problems with social functioning. In this study, we seek to understand ways in which people with nystagmus are currently supported across the UK and identify any geographical variations or disconnects between current practice and best practice, as judged by patients and their carers.Methods: A nationwide, qualitative, cross-sectional, questionnaire study of people with nystagmus and their carers. Recruitment was achieved through specialist clinics, charity events, online advertisements and social media calls. Data was gathered using five, age-appropriate questionnaires which were completed and returned to the research team between November 2016 and August 2018.Results: 184 respondents were included (89 carers, 47 patients aged 4-10 years, 5 aged 11-14 years, 4 aged 15-17 years and 39 > 18 years). Notably, respondents rated social media as the best source of information they have received, even compared with face-to-face consultation with medical professionals. Additionally, only 33% of the respondents had been offered visual impairment support. Notably, patterns of clinical practice and patient experience emerged according to geographical location, particularly provision of initial information and ongoing VI support.Conclusions: This study highlights a significant variation in the support and information received by people in the UK with nystagmus. It also supports the role of charities and increasingly, social media in the provision of patient information. The study also highlights the need for standardized guidelines for the management of patients with nystagmus, particularly with regard to support and information.

Burden and depression in the caregivers of blind patients in India.

PURPOSE: Several studies have examined the rates of depression in caregivers of patients with debilitating neurologic diseases. This study describes the degree of burden and the prevalence of depression among individuals caring for legally blind patients. To the best of our knowledge, no prior studies in the ophthalmic literature have reported this relationship. DESIGN: Clinic-based, cross-sectional study. PARTICIPANTS: We included 522 individuals in Rampur, India, providing care to their close family relatives who were legally blind. Visual acuities varied from 20/200 in the best eye, to no light perception (NLP) in each eye. METHODS: Several surveys were completed by the caregivers of patients whose sole impairment was visual, allowing us to quantitatively and selectively assess burden and depression among caregivers of blind patients. MAIN OUTCOME MEASURES: The Burden Index of Caregivers (BIC) was used to measure care burden and the Center for Epidemiologic Studies Depression scale was applied to determine depression. RESULTS: Caregivers of patients with NLP experience higher burden than caregivers of patients with lesser degrees of blindness. Daily hours spent on close supervision and the intensity of care-giving were the definitive factors linked to high BIC scores (P<0.01). The prevalence of caregiver depression increased with degree of visual impairment from 16% in the 20/200 group to 48% in the NLP cohort (P<0.01). Independently related variables for depression in caregivers were daily hours required for close supervision of the patient, intensity of care-giving, low household income, and the caregiver being the parent of a blind adult child (P<0.01). CONCLUSIONS: Severity of blindness in patients directly correlated with burden in caregivers. More severe forms of blindness meant patients require more help with their activities of daily living and additional hours of close supervision per day, both of which increase care burden. The same 2 factors also increase risk of caregiver depression along with low household income and the caregiver being the parent of a blind adult child. Awareness of the extent of burden and depression among caregivers of blind individuals is required by vision health personnel to identify at risk caregivers and implement effective interventions and support strategies.

Managing depression in older people with visual impairment.

The author describes the management of depression in older people with visual impairment. The concept of depression is defined, and the main classifications are outlined. The signs and symptoms of depression are presented and approaches to treatment are discussed. The role of the nurse in managing depression in older people with sight loss is discussed.

Low vision and blindness among midlife and older adults: a review of the nursing research literature.

The number of midlife and older adults with visual impairment is expected to double by the mid-2020s. There has been little research on low vision and blindness in the nursing literature to date. Existing studies tended to be qualitative and preliminary in nature and most had small sample sizes. The risk of visual impairment increases with age and is a common comorbidity among the aged chronically ill.

Older men's experiences of living with severe visual impairment.

BACKGROUND: Little is known about how men react to their health and illness experiences. Lack of information about the lives of older men is unfortunate considering the anticipated growth of the older male sector of society and the fact that older men age differently than older women. One health-related experience common to many older men is severe visual impairment caused by macular degeneration, a chronic eye disease that affects central vision. Understanding the health experiences of older men is imperative if nurses are to provide quality care to this growing segment of society. AIM: The purpose of this study was to gain an understanding of the experience of severe visual impairment from the perspective of older men with macular degeneration. METHOD: A phenomenological approach was used to investigate the experience of severe visual impairment in eight older men with macular degeneration. Data were gathered through audiotaped interviews and analysed using a modified Giorgi method. FINDINGS: The resultant general structural description revealed six central themes: (1) older men's lives were circumscribed by what they could and could not see and could and could not do, (2) cherishing of independence, (3) creation of strategies, (4) acknowledgment of the progression of visual impairment, (5) confrontation of uncertainties, skepticism, and fears about their diagnosis and treatment, and (6) persistence with hope and optimism. CONCLUSIONS: A thorough nursing history and assessment must be completed, including information about the progression of the visual impairment, strategies used for living with visual loss, and presence of other health problems that may complicate life with visual impairment. Nurses must be aware that older men with macular degeneration are often sceptical about their diagnosis and treatment. Therefore, careful education and clear communication are essential.

Visão subnormal: percepção do estudante de enfermagem / Vision subnormal: nursing student´s perception

Dentro da problemática da visão encontramos os portadores de visão subnormal, que geralmente são considerados e tratados como cegos. Este estudo é do tipo descritivo-exploratório e objetivou identificar o nível de conhecimento do aluno de enfermagem sobre a assistência de enfermagem à criança com visão subnormal...

The ophthalmic registered nurse's responsibility to the adult patient with low vision.

A key goal in the care of adult patients with low vision is to help them focus on their visual abilities rather than their disabilities. This article presents information that every ophthalmic nurse can use to teach patients with low vision some practical ways to change their personal environment to enhance visibility and safety. There are also some myths and misunderstandings about low vision that the nurse can dispel. Before referring patients to low-vision specialty clinics or organizations, every ophthalmic nurse can begin the visual rehabilitation for patients with low vision.

Aging, physiology, and vision.

This article provides an overview of the normal, physiologic changes in vision that are a part of the aging process. Associated symptoms noted by and worrisome to many patients also are discussed. Clear explanations of the rationale and cause of these concerning complaints reduces anxiety and enables people to function more safely in environments in which visual loss is likely to have a deleterious effect. Likewise, accurate understanding of normal versus pathological vision symptoms assists health care providers, such as nurse practitioners, to better triage, assess, and treat ophthalmic-related problems.