February 7 & 8, 2004, Bank of Montreal Institute for Learning, Toronto, ON
Executive Summary
Project Lead
Project Partners
Healthy Living with
a Disability
or Chronic Illness
A Summary of
Current Research in
Physical Activity,
Environment,
Nutrition, and
Socioeconomics
PEL Consulting and
SPH Planning and Consulting
October 2003
Healthy Living with a
Disability or Chronic Illness
Executive Summary
Table of Contents
A. HEALTH, WELL BEING AND QUALITY OF LIFE ................................................ 1
B. PHYSICAL ACTIVITY............................................................................................ 2
B.1 HEALTH RISKS OF INACTIVITY ............................................................................... 3
C. ENVIRONMENT..................................................................................................... 4
D. NUTRITION............................................................................................................ 5
SOCIOECONOMIC FACTORS..................................................................................... 7
E.1 SES AND THE ENVIRONMENT ............................................................................... 7
E.2 SES AND PHYSICAL ACTIVITY ............................................................................... 8
E.3 SES AND NUTRITION ............................................................................................ 8
F.
SUMMARY............................................................................................................. 9
G. REFERENCES..................................................................................................... 10

Muscular Dystrophy Canada and
Active Living Alliance for Canadians with a Disability, 2003
i
Healthy Living with a
Disability or Chronic Illness
"The enjoyment of the highest attainable standard of health is one
of the fundamental rights of every human being"
(World Health Organization, 1946)
Health is the right of all individuals, including people with disabilities. The attainment of
good health is a combination of many factors (Table 1), which may or may not be
influenced by a disability. Unfortunately, Canadians with disabilities generally report a
lower level of well-being than those without a disability (Canadian Council on Social
Development, 2003).
So, how can people with a disability or chronic illness increase their chances for good
health? Answering this question is the focus of the Healthy Living Project, a joint
initiative of Muscular Dystrophy Canada and the Active Living Alliance for Canadians
with a Disability with support from Health Canada through its National Voluntary Health
Sector Development Programme. The project is exploring whether or not ‘healthy living’
can include individuals with a disability or chronic illness.
A. Health, Well Being and Quality of Life
Health
Health and well being are key factors that determine quality of life.
Health is "complete physical, mental and social well-being and not
merely the absence of disease or infirmity" (World Health
Organization, 2002). It enables one to enter into relationships with
others, to work and to play in all stages of life (FPTACPH, 1999).
Unless a disability results from an illness, health status and
disability are unrelated. All individuals can optimize their
Physical Social
health by adopting a wellness-oriented lifestyle, a conscious
effort to improve one’s physical, psychological and spiritual health.
Table 1: Factors influencing health
• income and social status
• education
• physical environments
• personal health practice
• healthy child development
•
•
•
•
•
Mental
social support networks
employment and working conditions
biology and genetic endowment
coping skills
access to health services
A lack of willingness or time is the most common barrier to improving our health practices.
Healthy lifestyle practices may be particularly important for people with disabilities since
they have an increased risk for illnesses such as high blood pressure, diabetes, obesity,
high cholesterol, depression, heart attack, bowel and bladder problems, weak or broken
bones and breathing problems.
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Executive Summary
People with disabilities can optimize their chances for good health by:
•
improving their diet, nutrition and weight control,
•
eliminating tobacco use and avoiding alcohol and drug abuse,
•
participating regularly in physical activity,
•
using primary health care services (e.g., health screening, immunizations),
•
developing strong social support,
•
minimizing exposure to environmental hazards,
•
managing stress, and
•
getting a good night's sleep (Marge, 1994).
B. Physical Activity
ACTIVE LIVING . . .
is a lifestyle that values physical activity and incorporates it on a daily basis
“Active living is more than just physical fitness or exercise. It means making physical
activity a part of daily living, whether it's gardening or taking the dog for a walk or taking
the kids out to fly a kite. Active living encourages everyone, not just people who are
young and fit, to get up and get moving.” (Health Canada, 2003c)
Table 2: The benefits of active living
Improvements in . . .
• energy for and function in daily activities and ability to participate in leisure activities
• quality of life and relaxation
• self esteem, coping skills, mood and psychological well-being
• personal health practices and weight control
• muscle, joint and bone strength
Decreased risk of . . .
• heart disease, high blood pressure and stroke
• colon cancer
• diabetes
• depression or stress
• mental and physical fatigue
• pain and falls
Active living reflects research indicating that modest amounts of activity (e.g., walking at
a “light” pace for a total of 1 hour per day) produce substantial health benefits (Health
Canada & Canadian Society for Exercise Physiology, 2000). And it’s not necessary to
do all of the exercise in one bout. Thus, active living provides people with disabilities
with a realistic option for improving their health. In addition, people who are unable to do
any physical activity can actively improve their health through nutrition, body
awareness, and appropriate medical care efforts (Lanig et al, 1996).
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Executive Summary
The hardest part of active living is actually taking the first step, but doing “something”
instead of “nothing” provides the greatest health benefits. The key to success is the
ability to “do one small thing to get you moving”. Examples of a suitable “first step”
would be parking at the far end of the parking lot when going to the shopping mall or
doing neck and shoulder circles while sitting at your desk. It is also crucial to choose
activities that are of interest to you. No one will stay active if they do not enjoy what they
are doing.
People with disabilities are often less active
because they think that they are physically unable to
do more. Active living offers these individuals a
different perspective. Gone are the traditional
expectations for “fitness” or “exercise” (e.g., no pain,
no gain). Rather, active living emphasizes our ability
to do activities, unique to our interests and abilities,
that benefit our health. From the active living
perspective, walking or wheeling is just as valued as
running, and carrying groceries or doing household
chores contributes to health in a manner similar to
traditional strengthening exercises.
B.1 Health risks of inactivity
We now know there are very significant health risks from a sedentary lifestyle. For
example, physical inactivity is as dangerous as smoking (Health Canada &
Canadian Society for Exercise Physiology, 2000).
=
Individuals with limited mobility have a particularly high risk for sedentary lifestyle
illnesses. As the disability limits activity, leisure-time activities are abandoned and other
body systems deteriorate because of disuse. Unfortunately, problems such as fatigue
and muscle weakness are virtually always thought to result from the disability and the
influence of inactivity is ignored (Stuifbergen & Roberts, 1997). The belief that excess
stress or activity will make the disability worse may also limit activity. While there is
research to suggest that care must be taken in prescribing exercise for individuals with
neuromuscular disease (Kilmer et al, 1994) or post-polio syndrome (Jones et al, 1989),
moderate forms of physical activity have been found to be safe and effective
(Wright et al, 1996). In reality we know that only a very tiny percentage of people with
disabilities are physically unable to perform any meaningful type of physical activity.
3
Executive Summary
C. Environment
“Health is the result of much more than medical care; people are
healthy when they live in nurturing environments and are involved in the
life of their community, when they live in Healthy Cities” (IHCF, 2003).
The ‘Healthy Cities’ movement recognizes the clear link
between environmental factors, such as buildings,
transportation and housing, and health. The “environment”,
whether physical, social, natural or economic, has a strong
influence on us. It can undermine our health and well being,
and be a barrier to good health practices (USDHHS, 2000).
For example, if a fitness facility is not accessible, some
people will not have the opportunity to adopt a physically
active lifestyle. By making changes to the environment,
professionals can ensure that people with disabilities are
able to take control of their own health and choices about
health promoting behaviours (Rimmer, 1999).
A review of environment indicates:
•
There are many barriers, ranging from architectural and physical barriers to financial
and social barriers, which may prevent activities of daily living from being performed.
•
There is considerable information about housing codes and guidelines but they often
combine the needs of persons with disabilities and older adults, neglecting the
differences across age groups.
•
Adaptations must consider the characteristics of the person, the environment, as
well as the interaction between the two.
•
Professional expertise in making adaptations may be limited or of low quality (e.g.,
types of adaptation services offered, limited assessment or evaluation approaches).
•
The health impacts of environments must also consider policy, regulatory and
legislative influences.
Universal design is recognized as the most effective approach to
providing environments that are suitable for the widest range of
abilities. As a result, it benefits everyone (e.g., sloped walkways
with wider entrance doors benefits people with limited mobility
and those carrying or moving things in and out of the house).
Concepts such as ‘visitable’ or ‘flex’ housing (CMHC, 2003;
Kochera, 2002) reflect the principles of universal design.
Visitable housing ensures basic access and gives people with
disabilities greater independence in their own homes or in the
homes of the neighbours that they may choose to visit. ‘Flex’
housing incorporates, at the design and construction stage, the
ability to make changes to meet future needs, easily and with
minimum expense.
4
Four Principles of
FlexHousing
•
Adaptability
•
Accessibility
•
Affordability
•
Healthy Housing
Executive Summary
Healthy environments (Robert Wood Foundation, 2001) rely on sustainable
development and smart growth that enables people to meet their present needs without
the negative effects of urban sprawl or compromising future generations. Healthy and
liveable communities look at the physical design of the built environment, how it effects
people, and how community resources can be used to improve health status and quality
of life. The provision of suitable public transportation options is also vital to preventing
restricted and “unhealthy” communities. From the disability perspective, accessible
transportation options are considered the “passport to independent living” (Ling-Suen &
Mitchell, No date).
Unfortunately, current environmental design practices often result in physically
inaccessible environments and perpetuate what has been coined a “design apartheid” –
the promotion of discriminatory design and development practices that prevent
participation in daily activities by persons with disabilities (Imrie and Wells, 1993, Imrie,
2001). The scope of this problem is amplified in a health context because many people
with disabilities do not seek out or obtain quality health care knowing that the majority of
these facilities are inaccessible or not suitably equipped. Given that environmental
barriers also include the resulting embarrassment, lack of understanding and inadequate
treatment, it is clear that technical design standards, codes and regulations are not a
complete solution. Training and education must be provided in addition to well-designed
and accessible facilities so that people with disabilities can be encouraged to seek out
and utilize health-related services.
D. Nutrition
Disability
Nutrition is a key component of an individual’s health. Malnutrition
increases the risk of hospitalization, impaired immune response,
Nutrition
functional impairment, and premature institutionalization. The
health impacts of poor nutrition are often magnified because the
onset is usually very gradual. The signs and symptoms are also
Health
very general and often attributed to other medical conditions
(Ham, 1994). While the influence of nutrition is clearly recognized
in relation to acute injuries (e.g., severe burns), nutritional factors are much less likely to
be addressed in relation to chronic health problems (e.g., pressure sores).
Table 3: Risk factors and indicators associated with poor nutritional status
• low income
• presence of disabling conditions
• social isolation
• being more than 20% above or below the
recommended weight for height
• significant weight loss
• sensory, cognitive or emotional impairment
• limitations of daily activities
• reliance on economic assistance (e.g., disability
• use of multiple medications
pension)
• inactivity and/or immobility
• change in functional status
(Ham, 1994; Vailas et al, 1998; White et al, 1991)
5
Executive Summary
Research indicates a strong association between disability and nutritional status. For
example, 73% of individuals with a limitation of one activity of daily living had a high
level of nutritional risk (Sharkey, Haines & Zahoori, 2000). That percentage increased to
93% among individuals with limitations in at least two activities of daily living. Similar
results are reported for children with disabilities who have an increased risk for growth
delays, dehydration and malnourishment because of eating and communication
difficulties (Ayyangar, 2002). Unfortunately, much of the available nutrition information,
for example on the Internet or in magazines, stems from either the producers of specific
products or personal stories and anecdotes. As a result, the information is often
contradictory or confusing, it is impossible to determine whether the information is
correct, and how the information may apply to each individual is unknown. The
presence of a disability or the use of medications only further clouds the already “murky”
waters of nutrition information. Until adequate research is conducted to fill the current
gap in our knowledge base, people with disabilities and their families will continue to find
it difficult to obtain accurate information that is easy to understand and specific to their
condition (Rimmer, 2002).
Studies suggest that 40% of people with disabilities have extremely abnormal body
composition, either obese or emaciated (Bax, 1993; Hendy & Nagle, 2002). When
people think about the potential health problems related to nutrition, they virtually
always thinking about being overweight. Obesity is an “epidemic” that has recently been
highlighted in the mainstream media. Obesity creates additional health risks for people
with disabilities, including heart disease, diabetes, high blood pressure, poor circulation,
gall bladder disease, pneumonia, decreased mobility, limited ability to transfer or move
independently and some types of cancers (Bax, 1993; Health Canada, 2003b; McCrory
et al, 1998; Steele, 2003b). Research indicates that people with disabilities have an
even higher probability of being overweight than people without disabilities (Rimmer,
1999), primarily as a result of poor nutrition and sedentary lifestyles. For example, up to
50% of people with Duchenne muscular dystrophy are obese (Bax, 1993). However, the
increase in body weight occurs only after they require the use of a wheelchair, when
their daily activity is reduced but their eating habits remain the same (McDonald, 2002;
Willig et al, 1993).
However, obesity is not the only issue. The risk for limitations of function increases when
body weight is either increased or decreased (Galanos et al, 1994). Problems with being
too thin tend to occur among individuals with more severe disabilities. In young people,
such as those with cerebral palsy, spina bifida or muscular dystrophy (Bax, 1993), it can
also prevent normal growth and development, weaken the muscles, impair heart function
and increase the risk of pneumonia. Being underweight also significantly increases the risk
of osteoporosis, infertility and poor immune function, even in the absence of an eating
disorder or specific illness.
The link between nutrition and disability is complicated by the fact that a disability can
lead to significant changes in body composition even without dietary changes
(Czaplinski, 2001). Disabilities that increase muscle tone or activity can result in
decreased body weight. Conversely, increased body weight is associated with
disabilities that decrease muscle tone or activity. However, the relationship is not always
straightforward. For example, a study of children with cerebral palsy indicated that their
6
Executive Summary
resting energy levels were similar and the energy used during the day was lower than
their peers without disabilities (van den Berg-Emons et al, 1995). While the researchers
had anticipated that the increased muscle spasticity and tone among the children with
cerebral palsy would increase their resting energy expenditure, this was not the case. In
fact, the children with cerebral palsy were significantly fatter because of their sedentary
lifestyles.
E. Socioeconomic Factors
Higher SES
Research on the relationship between
socioeconomic factors and health has
examined factors such as age, gender,
and ethnicity (Crespo et al, 1999).
Research has also linked
socioeconomic status (SES) and the
factors that influence health, such as
environmental design, physical activity
and nutrition. However, the influence of
Better Health
SES on the health of people with
disabilities has not been studied directly. Nevertheless, there is substantial research
documenting the typically low SES of people with disabilities. For example, people with
disabilities have significantly lower levels of employment (Hulett, 1999) and when they
are employed, they have significantly lower levels of income (Hulett, 1999; Tate, Roller &
Riley, 2001). Research also consistently shows a strong relationship between SES and
health. That is, when SES is higher, health status is improved. Conversely, when SES is
lower, health tends to be poorer and the frequency of health risk factors and unhealthy
lifestyle choices, such as smoking, drug and alcohol use or physical inactivity, is
increased (Millar & Stephens, 1993; Pulliam & MacKenzie, 2003).
E.1 SES and the environment
Studies clearly indicate the influence of socioeconomic factors on the environmental
barriers to good health. Most buildings are planned, designed and constructed based on
cost considerations. New barriers to access are routinely created during and after the
construction process, and there continues to be little recognition of the link between
accessible design and the health and quality of life for persons with disabilities.
Despite increasing awareness of the rights of people with disabilities, inaccessible
housing and transportation continue to develop. As a result, people with disabilities have
limited choices as to where they live, the standard and type of housing and adaptations
that are available, and where they can travel (Dunn et. al, 2003). Although the majority
of persons with disabilities rely on public or non-motorized forms of transportation, in
Canada these systems are largely not accessible (Ling-Suen and Mitchell, No Date).
Transportation options are further limited because alternate services (e.g., para-transit)
are usually underfunded and/or private transportation (e.g., accessible cabs) are very
expensive.
7
Executive Summary
E.2 SES and physical activity
S E S a n d In a c t iv it y A m o n g C a n a d ia n s
70
60
Percent
50
40
30
20
10
0
Socioeconomic status has a significant
impact on the physical activity of Canadians
(FPTACFT, 1997). People with a lower SES
lead more sedentary lives (National Center
for Chronic Disease Prevention and Health
Promotion, 2003). They participate less
frequently, and when they do participate it is
in less intensive types of activity (Droomers
et al, 1998).
When interviewed, women with physical
disabilities indicated that they knew the
importance of regular exercise for their health
H ig h S E S L o w S E S
H ig h E d .
L o w Ed .
but that economic factors limited their ability to
access supports such as facilities or
professionals (Gill, 2003). Similarly, in a study of people with and without disabilities the
lowest SES group was twice as likely to be inactive as the high SES group (Droomers et
al, 1998). Even those who reported only “some financial problems” were significantly less
active. In terms of employment status, individuals who were unemployed because of a
disability were also twice as likely to be physically inactive (Droomers et al, 1998).
Financial factors must also be considered in terms of their impact on the ability of
children with disabilities to participate in physical activity (Bauman, 2003). Parents of a
child with a disability often incur many additional expenses (e.g., medicine, therapy) that
can significantly limit the discretionary income available to family members. Parents
also indicate that activity costs deter them from trying to participate because often they
find that an activity is inaccessible or inappropriate for their child after having paid for
the programme or for admission to the facility. As a result, they are much less likely to
“take a chance” with their financial resources in order to use similar programmes or
facilities in the future.
E.3 SES and nutrition
Socioeconomic status is significantly related to body composition and nutritional status.
Canadians in the lowest socioeconomic group are up to 1.5 times more likely to be
overweight and half as likely to have a high level of nutrient intake (FPTACPH, 1999;
Ryan & Bower, 1989). The most frequent barrier to good nutrition reported by people
with disabilities (men 64%, women 71%) was that “food costs too much” (Hendy &
Nagle, 2002). Interviews about the health practices of women, 26 to 75 years of age,
with physical disabilities indicated that they were generally well-educated about
nutritional guidelines (Gill, 2003). However, few of the study participants actually
followed the recommended guidelines due to the cost of food and required assistance,
as well as limitations related to food preparation. Given the low level of compliance with
recommended dietary practices, it is not surprising that most of the study participants
were overweight or obese and the changes in body weight led to decreases in self8
Executive Summary
esteem and poor perceptions of body image. While effective interventions (Dieticians of
Canada, 2003) have been developed to improve the nutritional status of low SES
individuals, the applicability of these interventions for Canadians with disabilities has not
been investigated.
F. Summary
Research has clearly demonstrated that physical activity, environment, nutrition, and
socioeconomic factors significantly influence health. People with disabilities currently
have low levels of physical activity participation which limit their ability to enjoy the
benefits of active living and increase their risk for the negative health impacts of a
sedentary lifestyle. A variety of physical and social barriers influence the health impacts
of both private and public environments. Ensuring that housing, transportation, and the
built environment are designed and constructed to be accessible is a first step towards
enabling people with disabilities to attain more control over their personal health
practices. In terms of nutrition, the risk factors associated with poor nutrition (e.g.,
presence of a disability, social isolation, low socioeconomic status, extremes of body
composition) occur frequently among individuals with a disability. Poor nutrition is a
significant factor in the high rate of abnormal body composition and the increased risk of
illness and secondary conditions observed among people with disabilities. Clearly,
people with disabilities have a high incidence of low socioeconomic status, regardless of
the method of measurement. These lower socioeconomic levels are significantly related
to lower levels of physical activity, increased health barriers in both public and private
environments and poor nutritional status.
Regardless of ability or level of function, all individuals can improve their probability for
good health through the adoption of a healthy lifestyle. People with disabilities should be
encouraged, enabled and supported in their attempts to increase the health-promoting
behaviours within their daily activities. The development of effective health promotion
programmes designed to target the needs of people with disabilities would also
substantially improve their probability of good health (Rimmer et al, 2003; Tate et al,
2002).
9
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