Support Groups Can Improve Quality of Life

by Dan Roberts
Researchers have found that facilitated patient support groups can significantly improve visual quality of life (VQoL) for visually impaired people. Twenty-nine groups of up to six patients each were recruited for participation in a “peer group emotional support service” facilitated by trained counselors for a period of six months. Their responses to questions were measured at the start of the service, at the end of the service, and six months after completion of the service.
For the group as a whole, VQoL significantly improved between the beginning of the service and the end, but six months later was no better than at the start. Those with poorer initial VQoL, however, showed significantly greater improvements after six months. The issues that became and remained easier were “feeling lonely or isolated due to eyesight”, “feeling sad or low due to eyesight”, and “feeling worried about general safety outside the home”.
Addressing the difference between people with initially higher and lower VQoL, the researchers concluded that “different interventions may be needed for those with initially good VQoL and to improve other aspects of quality of life not influenced by the service.”
Source: Optometry & Vision Science (August 2013 – Volume 90 – Issue 8 – p 836-842)
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Pearls from Recent Studies on Low Vision Rehabilitation and Psychosocial Issues

Research of interest to the AMD Community as presented at Vision 2008, Montreal, Canada
Selected and Summarized by Dan Roberts, Director, MD Support
These findings are derived by the referenced authors based solely upon the results of their respective studies. In every case, more research is recommended before final conclusions can be drawn.
Pearl #1.
Cultural factors unique to current senior adults have a significant influence on their perceptions of visual impairment, disability, and aging. These impact their self-perception and response to their own vision loss, and may impact their participation in rehabilitation.
Presentation:
The difference age makes: Cultural factors shaping older adults’ experience of and responses to vision loss from age-related macular degeneration (Mogk M., Lutheran University, Humanities/ English, Thousand Oaks ,California, United States)
Pearl #2.
Walking with safety and confidence and enjoying hobbies and leisure activities contribute to the quality of life among the senior low vision population. Self-esteem explains a nearly equal amount of variance in quality of life, specifically, ability to help with chores around the house, using remaining vision effectively, and often leaving the property and walking without help.
Presentation:
The impact of activities of daily living and self-esteem on quality of life among older persons with vision impairment (La Grow S., University, School of Health and Social Services, Palmerston North, New Zealand)
Pearl #3.
Vision impairment is associated with a reduction in activity in the areas of work and leisure, but not in domestic areas of daily living. Vision impairment is associated with a reduction in all areas of independence. People with impaired vision are least satisfied with independence in quiet recreation, and sighted people are the least satisfied with independence in active recreation.
Presentation:
Activity and independence: A comparison study of older people with and without impaired vision (Good G.A., La Grow S., Alpass F., University, School of Health and Social Services, Palmerston North, New Zealand, Massey University, School of Psychology, Palmerston North, New Zealand)
Pearl #4.
Older adults with visual impairment and severe depressive symptoms are most likely to be current smokers, to be obese (BMI>30), to be physically inactive, to have fair/poor health, to have difficulties with activities of daily living and to use special equipment to navigate the environment.
Older adults with both visual impairment and depressive symptoms experience the greatest health disparities except alcohol use. Without timely intervention, older adults with visual impairment who also experience depressive symptoms are vulnerable to health decline and further disablement.
Presentation:
Effects of depression on health and functional status among older adults with visual impairment (Jones G.C., Crews J., Danielson M., Center for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, United States)
Pearl #5.
The majority of daily activities (such as nutrition, fitness, personal care, communication and mobility) and social roles (such as responsibility, community life and leisure) are compromised by visual impairment. Furthermore, nearly 1/3 of the visually impaired population has depressive symptoms. The most important services are Activities of Daily Living followed by Orientation and Mobility, Optometry and Adapted Computer. Psychological services are among the least provided activities.
Presentation:
Waiting for services from a vision rehabilitation center: Are services related to the needs of elderly clients? (Témisjian K., Wanet-Defalque M.-C., Gresset J., Desrosiers J., Rousseau J., Dubois M.-F., Vincent C., Carignan M., Renaud J., Overbury O., Institut Nazareth et Louis-Braille, CRIR, Longueuil, Canada, Institut Nazareth et Louis-Braille, Université de Montréal École d’Optométrie, CRIR, Longueuil, Canada, Université de Montréal, École d’Optométrie, Montréal, Canada, Université de Sherbrooke, École de Réadaptation, Sherbrooke, Canada, Université de Montréal, Institut Universitaire de Gériatrie de Montréal, École de Réadaptation, Montréal, Canada, Université de Sherbrooke, Sherbrooke, Canada, Université Laval, Québec, Canada, Université de Montréal, Montréal, Canada, Université de Sherbrooke, Université de Montréal, Montréal, Canada, Université de Montréal, McGill University, École d’Optométrie, Montréal, Canada)
Pearl #6.
Increased age results in a greater number of relinquished activities for those with good sight, but not for those with impaired vision. Poor vision, poor hearing and lack of transport are reasons given by the visually impaired for stopping activity. In comparison, physical difficulties, lack of interest and lack of time are reasons given by normally-sighted people. Relinquished activities which most strongly correlate with a lower level of life satisfaction include dancing, sex and shopping for those with impaired vision and gardening, social activities and travel for those with sight.
Presentation:
Activities relinquished by older people with impaired vision: Why are they relinquished and what is the impact on life satisfaction? (Good G.A., Massey University, School of Health and Social Services, Palmerston North, New Zealand)
Pearl #7.
It does not appear that, with the exception of the number of friends and family identified, psychosocial factors are a significant influence on quality of life. Use of magnifiers does appear to influence the quality of life domains which relate to near vision tasks.
Presentation:
Psychosocial aspects of quality of life – A pilot study (Dickinson C.M., Hernandez Trillo A., University of Manchester, Faculty of Life Sciences, Manchester, United Kingdom)
Pearl #8.
Overall social participation of people with visual impairment is significantly lower than that of people without visual impairment. The groups also differ on all social participation domains except housing and interpersonal relationships. Depressive symptoms and perceived quality of distance vision together explain more than 60% of the variance in the level of social participation of the group with visual impairment.
Presentation:
Social participation and visual impairment in older adults (Desrosiers J., Wanet-Defalque M.-C., Gresset J., Témisjian, K., Dubois M.-F., Renaud J., Overbury O., Vincent C., Carignan M., Université de Sherbrooke, Rehabilitation, Sherbrooke, Canada, Institut Nazareth et Louis Braille, Université de Montréal, Montréal, Canada, Université de Montréal, Montréal, Canada, Institut Nazareth et Louis-Braille, Longueuil, Canada, Université de Sherbrooke, Sherbrooke, Canada, Université de Sherbrooke, Longueuil, Canada, Université Laval, Québec, Canada)
Pearl #9.
Quality of Life Index (QLI) scores globally suggest good quality of life of those with visual impairment—similar to those without visual impairment. The mean score for the “Health and functioning” domain of the QLI was the lowest , while the “Family” domain was the highest. Fewer depressive symptoms, greater satisfaction with participation in social roles and with social support, and fewer secondary health problems best explained better quality of life.
Presentation:
Subjective quality of life of older adults having visual impairment (Levasseur M., Renaud J., Gresset J., Overbury O., Desrosiers J., Wanet-Defalque M.-C., Dubois M.-F., Rousseau J., Témisjian K., Vincent C., Carignan M., Université de Sherbrooke, Sherbrooke, Canada, Université de Montréal, Montréal, Canada, Institut Nazareth et Louis Braille, Longueuil, Canada, Université Laval, Québec, Canada)

Descriptive Terminology for Macular Degeneration

by Dan Roberts
Originally published July 2004
By their choice of words, eye care professionals, public relations writers and media reporters hold the power to influence the psychological impact of macular degeneration on newly-diagnosed patients. This article attempts to bring awareness of terminology that is both accurate and sensitive to patient welfare, thereby establishing a directive for proper usage.
“Political correctness” is not the issue here. Rather, it is whether or not certain words and phrases are proper by definition. The terms “blind” and “afflicted,” for example, are not necessarily offensive, but they are incorrect as descriptions of macular degeneration and how it affects the experienced patient psychologically. It is true that newly-diagnosed patients often feel “afflicted,” but this kind of distress hopefully eases as they learn more about their condition and how to deal with it effectively.

Incorrect terminology

Consultation with eye care professionals and results from a survey of 23 macular degeneration patients have yielded the following common words and phrases, which do not accurately describe either the physical or the psychological condition of a person with visual impairment.
Nouns:
affliction
blindness
handicap
sufferer
victim
Adjectives:
afflicted
blind
handicapped
legally blind (an arbitrary acuity measurement for determining qualification for government aid and benefits. Varies widely among different countries and is not meant to describe visual ability.)
vision impaired (“Vision” commonly refers to more than eyesight, so it is best avoided.)
Verbs:
afflict
blind
handicap
crippled [by]
suffer (intransitive, i.e. “I suffer from AMD”)
The following words, and all synonyms of these words, are commonly used for dramatic effect or personal gain. Such usages can be detrimental to the psychological health of the patient and only serve to fuel the fires of emotion following initial diagnosis. This, unfortunately, is the goal in some instances.
blinding
crippling
devastating
distressing
fearful
frightful
grievous
insidious
life-ruining
life-wrecking
sinister
terrible
viscious
Here are excerpts from a single solicitation letter that was mailed to millions of senior adults across the country. It serves as one of the most blatant examples of this kind of emotional exploitation.
“Our . . . program is launching a major scientific assault on this life-wrecking disease.”
“The damage [macular degeneration] does is truly crippling.”
“. . . you’ll be legally blind with your chances for full, happy, and vigorous golden years shattered!”
“. . . it may be a long time before our macular degeneration researchers are able to make short work of this life-ruining disease.”
“The sooner we have the needed funds in hand, the sooner our all-out scientific assault on macular degeneration can put an end to this viscious disease!”
To further illustrate the problem, here are quotes from the kinds of news items that are almost daily occurances in the media. (Names have been changed to protect privacy.)
“[John] lived in [Springfield], Ga., with his beloved wife, Mary. It was while there that [John] was diagnosed with macular degeneration, an insidious eye disease that eventually renders a person blind.”
“[Steve’s] family says [he] suffered from macular degeneration — a condition that slowly blinds its victims.”
“The FDA’s decision . . . puts us one step closer to making available a therapy that may change outcomes for people with this devastating disease.”
This kind of language seriously counters the proper education and emotional welfare of newly diagnosed patients. For that reason, accurate and well-established terminology is offered here, and its use should be encouraged and expected within the entire professional community.

Correct terminology

The following words and phrases accurately describe either the condition or the patient. The terminology has been deemed appropriate by unanimous concensus of the major patient advocacy organizations (Low Vision Advocacy Summit, Genentech, Inc., San Francisco, CA, April 12, 2006.)
Nouns:
Central vision loss
Condition
Disorder
Disease
Low vision
Visual impairment
Adjectives:
Legally blind (only as a measurement for determining receipt of aid and benefits. See above.)
Partially-sighted
Visually disabled
Visually impaired
Verbs:
Affected [by]
Have

Summary & Recommendation

The kind of wording used to describe macular degeneration and the state of the people who have it can either positively or negatively effect newly diagnosed patients. Correct terminology makes use of words and phrases that are accurate by definition. Terminology that is inaccurate or emotionally inflammatory is counterproductive to proper patient education and potentially harmful to the patient’s wellbeing. Individuals who use such language in public communication are thought of by the AMD community as uneducated at least, unprofessional at most, and certainly disrepectful of those who deal with the daily realities of the disease.
We therefore recommend that only terminology that is accurate by definition, as outlined above, be deemed acceptable by those who are affected by macular degeneration and related diseases that may lead to central vision loss.