HIV/AIDS & Episodic Disability: Keys to HEALing - bccpd

HEAL Guides
resources
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EDUCATE and inspire
HIV/AIDS & Episodic Disability: Keys to HEALing
HEAL
Health Education Advocacy & Leadership
A project of AIDS & Disability Action Program/Wellness & Disability Initiative
BC Coalition of People with Disabilities
2010

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HEAL Guide No. 4
HIV/AIDS & Episodic Disability: Keys to HEALing
The HEAL Guides Series
The HEAL (Health Education, Advocacy and Leadership) framework is a crossdisability,
self-advocacy approach developed by the BC Coalition of People
with Disabilities (BCCPD).
Through education, advocacy and personal leadership (recognizing and sharing
skills, experience and encouragement) people with disabilities discover
new strengths, passions and possibilities. This creates a ripple effect into the
relationships and communities around us.
HEAL is a path to empowerment and our Guides are intended to “help, educate
and inspire” readers to explore their unique HEALing path. For information
about HEAL and other HEAL Guides, visit the BC Coalition of People with
Disabilities website at http://www.bccpd.bc.ca or contact us (please see page
3 for contact details).
How to use this HEAL Guide
HEAL Guides provide information from experts and researchers, as well as
people living with chronic health issues and disabilities. They offer a selection
of “keys:” facts, research findings, experiences, perspectives and insights
about living with a disability or a combination of disabilities or health conditions.
Most keys are one paragraph or two at most. You can begin with any key that
interests you or read the Guide from beginning to end.
The source for most keys can be found in parentheses at the end of the paragraph.
To read more about each key, find the source in the Resources section
at the end of this Guide. Additional helpful articles, books and websites are
included. If you are reading this Guide on your computer, the links provided
throughout are live and can be used to jump to listed resources.
BC Coalition of People with Disabilities
Wellness & Disability Initiative

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Disclaimer
While considerable care and effort have been taken in gathering and summarizing
the information included in this HEAL Guide, it may have become
outdated since publication. HEAL Guides offer a brief and selected overview
of research and perspectives on health topics to encourage discussion and
participation in your health care, in consultation with your professional care
provider. A recurring theme in HEAL Guides is the complex and personal balance
that creates wellness. Your health care providers play an essential role
and should always be consulted before making changes that may alter the
balance for you.
Acknowledgements
HEAL Guides are published by the Health Education, Advocacy and Leadership
project of the BC Coalition of People with Disabilities.
Writer & Project Director: Shelley Hourston • Editor & Designer: Ann Vrlak
Funding provided by the Provincial Health Services Authority.
For more on HEAL, visit us at www.bccpd.bc.ca, under Programs.
BC Coalition of People with Disabilities
204-456 W. Broadway, Vancouver, BC V5Y 1R3
Tel 604-875-0188 • TTY 604-875-8835
Fax 604-875-9227 • Toll Free 1-877-232-7400
email: wdi@bccpd.bc.ca
BC Coalition of People with Disabilities
Wellness & Disability Initiative

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In This Guide
Things We Know....................... 5
What is an Episodic Disability?...............5
Examples of Episodic Disabilities ............5
HIV as an Episodic Illness.......................6
Episodic Framework for HIV..................6
Fatigue Common and Debilitating.........7
Fatigue Important for Assessors..............8
Fatigue and Employment Link...............8
Fatigue and Other Chronic Illnesses.........8
Fatigue Unacknowledged........................8
Things That Help....................... 9
Managing HIV-related Fatigue...............9
Self-care Tips..........................................9
Uncertainty and Perception of Illness......9
Support in Managing Uncertainty....... 10
Mindfulness Eases Uncertainty............. 10
Meditation as Self Care......................... 10
Ups and Downs................................... 10
Neuroplasticity and the Brain...............11
Benefit Finding.....................................11
Stress................................................... 12
Stress and Substance Use...................... 12
Stress Management and HIV............... 12
Reducing Stress with Exercise................ 12
Massage Therapy..................................13
Complementary Medicine.....................13
Stress of Stigma....................................13
Stigma Leads to Depression...................13
Stigma in the Community.................. 14
Stigma and Ageism............................. 14
Spirituality.......................................... 14
Building Self-esteem............................. 14
Friendships and Support........................15
Self-advocacy........................................15
Resources................................. 16
BC Coalition of People with Disabilities
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Things We Know
Living with HIV is living with uncertainty, and never knowing when illness will set
in, and never knowing when discrimination will be encountered.
–Canadian AIDS Society and Canadian Working Group on HIV &
Rehabilitation. HIV as an Episodic Illness: Revising the CPP(D) Program
³³What is an Episodic Disability?
“An episodic disability is marked by fluctuating periods and degrees of wellness
and disability that are unpredictable. As a consequence, a person may
move in and out of the labour force in an unpredictable manner.” (Canadian
Working Group on HIV & Rehabilitation. Report on the National Summit)
³³Examples of Episodic Disabilities
“Episodic disabilities include (but are not limited to) conditions such as multiple
sclerosis, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome,
colitis, Crohn’s disease, premenstrual syndrome, interstitial cystitis,
endometriosis, migraine headaches, environmental sensitivities, lupus, epilepsy,
asthma, osteoarthritis, diabetes, cystic fibrosis, heart disease, chronic pain
syndromes, musculoskeletal conditions, hepatitis C, cancer, HIV/AIDS, learning
disorders and psychiatric conditions.” (Banks and Kaschak; Canadian Working
Group on HIV & Rehabilitation (CWGHR) referenced in Lightman et al.)
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³³HIV as an Episodic Illness
There are three factors that define HIV as an “episodic illness:”
• despite advances in treatment, people with HIV will experience periods
of illness “due to physical and psychosocial factors that will require
them to withdraw from the workforce, and make reintegration difficult”
• many people are able to return to work for varying lengths of time
despite periods of illness
• the experience of illness and wellness varies from person to person, is
related to the disease and treatment, and is unpredictable.
(Canadian AIDS Society and Canadian Working Group on HIV and
Rehabilitation)
³³Episodic Framework for HIV
A Canadian study published in 2008 explored episodic disability among men
and women living with HIV, generating the “episodic disability framework.”
The framework includes three elements:
• the “dimensions of episodic disability”
• the “context in which disability is experienced”
• triggers that initiate an episode of disability
(O’Brien et al.)
Dimensions of HIV Disability
There are four “dimensions of HIV disability.” When one or more of these
dimensions changes, the other dimensions are also affected.
• symptoms or side-effects of treatment, including stress, anxiety and
depression as well, as low self-esteem, shame, fear and loneliness
• difficulties associated with day-to-day activities
• barriers to social inclusion in various roles (parent, work/school, per-
sonal relationships and other social roles/activities)
• uncertainty that varies on a daily basis and over the course of the ill-
ness
(O’Brien et al.)
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Context–Factors Affecting the Experience of Disability
Participants in the Episodic Disability Framework study talked about the
impact of extrinsic (or external) factors and intrinsic (or internal) factors.
Extrinsic factors included stigma and social support from friends, family, pets,
partners, community, health care providers, etc. “Stigma resulted from discrimination
from friends, family, work colleagues, employers and health care
providers due to a participant’s HIV status, their sexual orientation, ethnocultural
background, employment status, and/or gender.” Intrinsic or internal
factors were personal characteristics (age, additional health challenges, etc.)
and “living strategies” or behaviours and attitudes used to cope with HIV.
(O’Brien et al.)
Triggers of HIV Disability
Episodes of disability followed one or more “triggers.” Examples provided
by the participants include “receiving an HIV diagnosis; starting or changing
antiretroviral medications; experiencing a serious illness; and suffering a loss
of others” (friends, neighbours, partners, family members). (O’Brien et al.)
How to Use the Episodic Disability Framework
Researchers suggest that health care providers use the framework to “structure
their thinking about the dimensions of HIV-related disability,” specifically
in less-commonly understood areas, such as the challenge of living with uncertainty.
People living with HIV can use the framework to become more proactive
in managing their health and reducing negative impacts where possible.
(O’Brien et al.)
³³Fatigue Common and Debilitating
Fatigue is one of the most common and debilitating symptoms of HIV, occurring
in up to 98 percent of people with the diagnosis. Researchers report
that fatigue causes people to stop working, restrict activities with family and
friends, and often require “an entire day to get through the simplest of household
chores.” Employment and daily activities are even more difficult because
of the “lowered motivation, difficulty concentrating and increased drowsiness”
that accompany HIV-related fatigue.” (Harmon et al.)
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³³Fatigue Important for Assessors
Service providers assessing level of disability, capacity for employment, and
need for home support and other in-home assistance must be aware of the
debilitating impact of HIV-related fatigue. (Harmon et al.)
³³Fatigue and Employment Link
A US study, completed in 2006, identified fatigue as “one of the most common
and debilitating complaints of HIV-positive individuals, potentially leading
to important functional limitations.” Those with lower levels of fatigue were
employed, had higher income, had lived with an HIV diagnosis for a longer
period of time and were receiving antiretroviral therapy. Participants who
were employed from the beginning of the fifteen month study showed some
improvement in their level of fatigue, while those who were unemployed did
not. (Pence et al.)
³³Fatigue and Other Chronic Illnesses
Researchers note that people with a combination of HIV and other chronic
illnesses are even more fatigued. The relationship between HIV and additional
(comorbid) illnesses is becoming an important issue as people with HIV now
live longer. Depression is a common comorbid illness for people living with
HIV and the link between depression and fatigue is well established. (Harmon
et al.)
³³Fatigue Unacknowledged
A 2006 Australian study also identified fatigue as a significant problem for
people living with HIV. Researchers found that, in addition to the difficulty
of coping with fatigue, “fatigue remains silent and invisible to participants’
families, friends and employers.” Furthermore, fatigue was “met with a lack
of acknowledgement and understanding from health professionals.” The
researchers note that people living with the fatigue of HIV developed coping
strategies by trial and error over time. (Jenkin et al.)
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Things That Help
³³Managing HIV-related Fatigue
Researchers interviewing people aged 50 and older with HIV found that they
used a number of strategies for coping with fatigue. Participants felt their fatigue
was caused by several factors and that the level of fatigue was an indicator
of overall wellness. Strategies used included changes in diet, vitamins and
prescription medications to address anemia and vitamin B12 and testosterone
deficiencies, modifying routines, exercise, rest, and complementary and
alternative medicine approaches, such as acupuncture, massage and herbal
remedies. (Siegel et al.)
³³Self-care Tips
A US study of 359 people living with HIV found 776 self-care strategies for
living with HIV and 526 sources of information about the strategies. Self-care
tactics fell into eight categories: “medications, self-comforting, complementary
treatments, daily thoughts and activities, diet changing, help seeking,
spiritual care and exercise.” Most of these techniques were seen as helpful by
study participants. Sources of information about self-care strategies included
self, health care providers, personal networks and community. (Chou et al.)
³³Uncertainty and Perception of Illness
“Illness uncertainty” or the unpredictability and episodic nature of an illness
has been studied among people living with diabetes, Parkinson’s, multiple
sclerosis, lupus and fibromyalgia. Illness uncertainty is described by researchers
as encompassing four components: ambiguity, uncertainty, lack of information
and unpredictability. Experiencing illness uncertainty leads to feeling
less hope, as well as greater feelings of distress, anxiety, tension, anger and
depression. Ultimately, illness uncertainty makes us feel less able to cope with
our illness. (Johnson et al.)
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³³Support in Managing Uncertainty
There is a “clear link between social support and efforts to manage high levels
of uncertainty over issues such as unpredictable disease progression, experimental
medications, and ambiguous symptoms.” Social support networks
help by providing information, emotional support, a safe place to vent feelings,
and acceptance and validation; assisting in skill development; and, encouraging
shifts in perspective. (Brashers et al.)
³³Mindfulness Eases Uncertainty
Mindfulness-based meditation which focuses on acceptance and living in the
moment has been found to be helpful in coping with illness uncertainty and
the perceived loss of control. “Mindfulness interventions develop the ability
to recognize negative thoughts, feelings, and sensations ... as momentary
aspects of awareness … [and] …also promote greater emotional clarity.”
(Johnson et al.)
³³Meditation as Self Care
Dr. Michael McGee at Harvard Medical School describes meditation as a “practice
of psychological weightlifting.” Typically, those who meditate enjoy three
immediate results: “increased discipline, regularization of one’s lifestyle and
increased commitment to one’s own self care.” (McGee)
³³Ups and Downs
Meditation is also commonly used to treat depression, anger, anxiety, stress,
hypertension, addiction, insomnia and chronic pain. “Meditation is a practice
of concentration. As the ability to concentrate improves, patients may become
more productive at tasks that require concentration, especially when
fatigued or in pain.” (McGee)
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Researcher Mark Williams in the UK has been testing a treatment called
mindfulness-based cognitive therapy (MBCT). MBCT combines ancient forms
of meditation with modern cognitive behaviour therapy. One way that the
treatment benefits people is helping them to live more in the moment, rather
than being caught up in upsetting memories from the past or worries about
the future. (University of Oxford News Release)
³³Neuroplasticity and the Brain
Neuroplasticity is the brain’s ability to rewire itself–“to grow new neural connections”
as Elisha Goldstein describes it. Neuroplasticity enables us to create
new connections and pathways in our thinking. Unfortunately, repeatedly
responding to life events in negative ways is also reinforced each time we do
it. Goldstein points out that bad news is more difficult to balance because “our
brains are wired to look for danger and pay more attention to the unpleasant
than the pleasant. If I were to pay you 10 compliments and then say something
judgmental or critical, you are more likely to remember and ruminate
about the judgment than the compliments.” This makes “mindfulness” even
more important in maintaining some control over the new neural pathways
we create. Read Goldstein’s fascinating blog, Mindfulness & Psychotherapy, for
more information. (Goldstein)
³³Benefit Finding
Looking for positive aspects of a challenging situation is a way of coping with
difficult life events and is called “benefit finding” by psychologists. Researchers
have found that people who look for and recognize some of the positive
effects or benefits of living with HIV/AIDS feel more optimistic and able to
manage challenges they face. Examples of some of the benefits identified
include access to medical care and disability benefits following HIV diagnosis,
better relationships with family and friends, improved coping skills, and improved
eating habits and nutrition. (Littlewood et al.)
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³³Stress
Successfully managing stress is important in living well with HIV/AIDS. Research
in the US found that, among women living with HIV/AIDS, “mastery over stress”
was linked to social support, spiritual perspective and the intensity of symptoms
at the time. Coping with illness-related stress was more difficult when interpersonal
conflict was also an issue. (Gray and Cason)
³³Stress and Substance Use
The ongoing stress that comes with chronic health problems, stigma, low selfesteem
and other challenges in life can lead many people to “self-medicate”–
use alcohol, nicotine or recreational drugs for temporary relief. Substance
misuse can trigger or worsen depression and seriously affect your HIV/AIDS
treatment regimen. Here to Help is an excellent starting point for information
and support. Developed by BC Partners for Mental Health and Addictions Information,
the website provides information in multiple languages (http://www.
heretohelp.bc.ca). See also the HEAL Guide 3, HIV/AIDS & Substance Misuse: Keys
to HEALing.
³³Stress Management and HIV
A study published in 2008 reviewed 35 stress management programs for people
living with HIV/AIDS, including training in guided imagery, progressive muscle
relaxation, interpersonal skills, medication and other aspects of living with HIV
and coping skills. Researchers found that these strategies reduced fatigue and
improved mental health and quality of life. (Scott-Sheldon et al.)
³³Reducing Stress with Exercise
Exercise is commonly recommended to reduce stress and increase energy level,
strength and muscle tone. Discuss your exercise plan with your doctor before
beginning to ensure that your medications, physical health and current fitness
level are considered. (Bopp et al.) For an overview of how to safely begin an exercise
program for people living with HIV/AIDS, see Mooney and Vergel’s “Exercise:
The Best Therapy for Managing Side Effects.”
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Recent studies also show that exercise reduces depression and depressionrelated
fatigue in people with chronic illnesses by increasing their sense of
achievement or mastery of physical exercise goals. (University of Illinois News
Bureau)
³³Massage Therapy
Massage therapy has been found to improve overall quality of life and ability
to cope with stress for people with HIV/AIDS, especially when combined with
meditation or relaxation training. Researchers believe that massage therapy
may also increase the body’s ability to fight HIV/AIDS. (Hillier et al.)
³³Complementary Medicine
Herbal remedies are a popular complementary and alternative medicine
(CAM) option and are used by some people to treat depression. Although
alternative medicines may seem safe because you can buy them over-thecounter
without a prescription, it is extremely important that you discuss
them with your doctor. Herbal or natural remedies can interact with prescription
medications (including those used to treat HIV/AIDS, depression, cancer,
heart conditions, and seizures), in some cases making them less effective. (St.
John’s Wort and Depression)
³³Stress of Stigma
Stigma, whether related to HIV, mental illness or other chronic health issues,
sexual orientation, or poverty, causes extreme stress. For people living with
HIV, stress has been linked to faster progression of the disease. (Cohen et al.)
³³Stigma Leads to Depression
The stigma surrounding HIV creates an enormous barrier to support and treatment.
In fact, stigma has been found to lead to depression. (Vanable et al.)
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³³Stigma in the Community
For people living in rural areas, stigma and discrimination are common in both
community and health care settings. It can be especially difficult to cope with because
of lack of alternative care providers, social isolation and lack of transportation
and/or resources to travel for services. (Zukoski and Thorburn)
³³Stigma and Ageism
For older people, the burden of stigma may be made even greater by ageism–
judgment and discrimination based on age. A study of HIV/AIDS in people over 50
found that 68 percent of participants experienced both ageism and HIV-associated
stigma. Researchers describe a “concept of double jeopardy” for this population.
(Emlet)
³³Spirituality
According to researchers, spirituality or religiousness increases after people have
been diagnosed with HIV. (Ironson et al. 2006) These individuals also experience
less depression and hopelessness, have lower cortisol (stress hormone) levels,
smoke less and practice safer sex. (Ironson et al. 2002)
³³Building Self-esteem
It can be very difficult to feel good about yourself when you are under the stress
of having symptoms that are hard to manage, when you are dealing with a disability,
when you are having a difficult time or when others are treating you badly. At
times like these, it is easy to be drawn into a downward spiral of lower and lower
self-esteem. Low self-esteem may also be a symptom of depression. One thing
you can do to help you feel good about yourself is to make a list of at least five of
your strengths, for example, courage, friendliness or creativity. Next make a list of
ten ways you could reward yourself that are free and not related to food or drink.
Examples might include taking a walk in your favourite part of town or in the
woods, enjoying a conversation with a good friend, and browsing at the library.
When you feel that you need a lift, do one of the activities on your list. (Copeland.
Building Self-esteem)
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³³Friendships and Support
Maintaining friendships or making new friends can be extremely difficult when
you are living with a chronic illness and stigma. Forming new relationships may
be even more important for people needing to avoid old patterns and social
connections linked with substance use. Making and Keeping Friends: A Self-help
Guide by Mary Ellen Copeland offers excellent practical tips to get started finding
new friends and maintaining friendships.
³³Self-advocacy
Living with one or more chronic health conditions means that there are times
when you need to advocate for yourself. Becoming a good self-advocate will
also help you when you need to advocate for others. Self-advocacy–protecting
your rights and getting the information, care, or changes you need–can be
especially difficult when stigma, depression and low self-esteem are involved.
Effective self-advocacy involves organizational skills to focus and identify what
you need, get the facts, plan a strategy and set goals. Good communication
skills are needed to explain your situation and gather support from others, to
ask for what you want, and to assert yourself calmly. Learning self-advocacy
strategies is well worth the effort and will help bolster your self-esteem and
nurture patience–two essential ingredients for success. For practical step-bystep
suggestions, see Mary Ellen Copeland’s Speaking Out for Yourself: A Selfhelp
Guide.
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Resources
For the source and additional information about the keys above, look for the
author’s name or article title (which appears in parentheses in the keys) in the
resource list below.
The links in this Guide are live, so you can jump to the reference or website
directly from the PDF on your computer.
You can learn more about HEAL (Health Education, Advocacy, and Leadership)
in BCCPD’s Transition magazine (Summer 2009) at: http://www.bccpd.bc.ca/
transsummer09.htm.
Banks, Martha E, and Ellyn Kaschak, eds. Women with Visible and Invisible Disabilities:
Multiple Intersections, Multiple Issues, Multiple Therapies. [N.p.]: Haworth
Press, 2003.
Preview available at Google Books. http://tinyurl.com/‌yze8y4d
BC NurseLine.
Telephone Anywhere in BC: 8-1-1.
TTY (Deaf and hearing-impaired): 7-1-1.
Call 8-1-1 to speak to a registered nurse 24 hours/‌day 7 days/‌week about nonemergency
health concerns.
To speak to a pharmacist: call 8-1-1 for medication information between 5 pm
to 9 am 7 days/‌week when your pharmacist may be unavailable.
For nutrition advice, call 8-1-1 to speak with a dietitian.
Translation services are available in over 130 languages on request. Say
the name of your preferred language in English to be connected with an
interpreter.
BC Partners for Mental Health and Addictions Information. HeretoHelp. http://www.
heretohelp.bc.ca (accessed March 7, 2010).
A partnership of:
Anxiety Disorders Association of BC; BC Schizophrenia Association; Canadian
Mental Health Association, BC Division; Centre for Addictions Research of BC;
FORCE Society for Kids’ Mental Health; Mood Disorders Association of BC.
Access information in multiple languages. Publications include:
BC School Resource Guide; Brochures; Fact Sheets; State of the Knowledge
Papers; Toolkits; and Visions Journal.
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BC Persons with AIDS Society (BCPWA). http://www.bcpwa.org (accessed March 7,
2010).
Resources, support, events/‌news, advocacy, and more.
Healthy Living Manual and Living+ Magazine.
Bopp, Christopher M, Kenneth D Phillips, Laura J Fulk, and Gregory A Hand. “Clinical
Implications of Therapeutic Exercise in HIV/AIDS.” Journal of the Association
of Nurses in AIDS Care 14, no. 1 (January-February 2003): 73-78. http://tinyurl.
com/yzt4h2s (accessed January 27, 2010).
Brashers, D E, J L Neidig, and D J Goldsmith. “Social Support and the Management
of Uncertainty for People Living with HIV or AIDS.” Abstract, Health
Communication 16, no. 3 (2004): 305-331. http://tinyurl.com/ycapzk5
(accessed February 11, 2010).
Canadian AIDS Society and Canadian Working Group on HIV and Rehabilitation. HIV
as an Episodic Illness: Revising the CPP(D) Program: A Brief Prepared for the
Sub-Committee on the Status of Persons with Disabilities. 2003. http://tinyurl.
com/‌yfawzjs (accessed February 8, 2010).
Canadian Mental Health Association. BC Division. http://www.cmha.bc.ca/ (accessed
March 7, 2010).
Source of information throughout BC on mental illness; mental wellness;
support; advocacy; education; Visions Journal; Mind Matters E-news and more.
A member of the HeretoHelp partnership.
Canadian Working Group on HIV and Rehabilitation (CWGHR). Episodic Disabilities.
http://tinyurl.com/‌y8mqnqh (accessed November 19, 2010).
———. Episodic Disabilities Network. http://tinyurl.com/‌yeqmf94 (accessed
November 19, 2010).
———. Report on the National Summit on the Episodic Disabilities Project. http://
tinyurl.com/‌ybkrlcv (accessed November 19, 2010).
CATIE (Canadian AIDS Treatment Information Exchange). http://www.catie.ca
(accessed March 7, 2010).
Comprehensive and current information about prevention, treatment,
living with HIV, news/‌events, and a directory of provincial, national and
international HIV/‌AIDS organizations.
BC Coalition of People with Disabilities
Wellness & Disability Initiative

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Chou, F Y, W L Holzemer, C J Portillo, and R Slaughter. “Self-care Strategies and
Sources of Information for HIV/‌AIDS Symptom Management.” Nursing
Research 53, no. 5 (September-October 2004): 332-39. http://www.ncbi.nlm.
nih.gov/pubmed/15385870 (accessed October 28, 2009).
Cohen, Sheldon, Denise Janicki-Deverts, and Gregory E Miller. “Psychological Stress
and Disease.” Journal of the American Medical Association 298, no. 14
(October 2007): 1685-1687. http://www.psych.ubc.ca/~healthpsych/jama%20
2007.pdf (accessed January 25, 2010).
Copeland, Mary Ellen. Building Self-esteem: A Self-help Guide. Rockville, MD: Center
for Mental Health Services. Substance Abuse and Mental Health Services,
[N.d.] http://tinyurl.com/yarb75u (accessed January 28, 2010).
———. Making and Keeping Friends: A Self-help Guide. Rockville, MD: Center for
Mental Health Services. Substance Abuse and Mental Health Services , [N.d.]
http://tinyurl.com/ydvf4xr (accessed January 28, 2010).
———. Speaking Out for Yourself: A Self-help Guide. Rockville, MD: Center for
Mental Health Services. Substance Abuse and Mental Health Services, [N.d.]
http://tinyurl.com/yg9r6ww (accessed January 28, 2010).
Crisis Intervention and Suicide Prevention Centre of BC (Crisis Centre). http://www.
crisiscentre.bc.ca/ (accessed March 7, 2010).
Distress Line Phone Numbers:
Greater Vancouver: 604-872-3311.
Toll free–Howe Sound & Sunshine coast: 1-866-661-3311.
BC-wide: 1-800-SUICIDE (744-2433).
TTY 1-866-872-0113.
Online service for youth: http://youthinbc.com/.
Emlet, Charles A. “‘You’re Awfully Old to Have This Disease’: Experiences of Stigma
and Ageism in Adults 50 Years and Older Living with HIV/‌AIDS.” Abstract,
Gerontologist 46, no. 6 (December 2006): 781-790. http://tinyurl.com/yjqoozb
(accessed January 29, 2010).
Goldstein, Elisha. “Mindfulness Reduces Stress, Promotes Resilience.” Interview by
Judy Lin. July 29, 2009. UCLA Today. http://tinyurl.com/yhwfo2p (accessed
January 6, 2010).
Gore-Felton, Cheryl, and Cheryl Koopman. “Behavioral Mediation of the Relationship
between Psychosocial Factors and HIV Disease Progression.” Psychosomatic
Medicine 70 (June 2008): 569-574. http://tinyurl.com/ycrgzls (accessed
February 7, 2010).
BC Coalition of People with Disabilities
Wellness & Disability Initiative

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Gray, J, and C L Cason. “Mastery of Stress among Women with HIV/‌AIDS.” Abstract,
Journal of the Association for Nurses in AIDS Care 13, no. 4 (July-August
2002): 43-51. http://tinyurl.com/yll342j (accessed February 11, 2010).
Harmon, James L, Julie Barroso, Brian Wells Pence, Jane Leserman, and Naima
Salahuddin. “Demographic and Illness-related Variables Associated with HIVrelated
Fatigue.” Journal of the Association of Nurses in AIDS Care 19, no. 2
(2008): 90-97. http://tinyurl.com/‌y8un5k4 (accessed January 10, 2010).
HealthLinkBC. http://www.healthlinkbc.ca/ (accessed March 7, 2010).
Dial 8-1-1 to speak to a nurse, pharmacist or dietitian.
Open 24 hours/‌day 7-days/‌week.
Hillier, Susan L, Quinette Louw, Linzette Morris, Jeanine Uwimana, and Sue Statham.
“Massage Therapy for People with HIV/‌AIDS.” Cochrane Database of
Systematic Reviews 2010, no. 1 (2010). http://tinyurl.com/yb3buzh (accessed
January 27, 2010).
“HIV/‌AIDS as an Episodic Disability in the Workplace.” Interagency Coalition on AIDS
and Development. http://tinyurl.com/yh2d28s (accessed February 11, 2010).
Hourston, Shelley. “Connecting with Your Community: A How-to Guide.” Transition,
Winter 2009, 8-10. http://tinyurl.com/yhzj6ge (accessed March 5, 2010).
Ironson, Gail, G F Solomon, E G Balbin, C O’Cleirigh, A George, M Kumar, et al. “The
Ironson-Woods Spirituality/‌Religiousness Index Is Associated with Long
Survival, Health Behaviors, Less Distress, and Low Cortisol in People with
HIV/‌AIDS.” Abstract, Annals of Behavioral Medicine 24, no. 1 (Winter 2002):
34-48. http://tinyurl.com/ykabnkz (accessed February 12, 2010).
Ironson, Gail, Rick Stuetzle, and Mary Ann Fletcher. “An Increase in
Religiousness/‌Spirituality Occurs After HIV Diagnosis and Predicts Slower
Disease Progression over 4 Years in People with HIV.” Journal of General
Internal Medicine 21, no. S5 (December 2006): S62-S68. http://tinyurl.com/
ybeksls (accessed February 12, 2010).
Jenkin, P, T Koch, and D Kralik. “The Experience of Fatigue for Adults Living with
HIV.” Abstract, Journal of Clinical Nursing 15, no. 9 (September 2006): 1123-31.
http://tinyurl.com/‌ydp3bx6 (accessed January 19, 2010).
BC Coalition of People with Disabilities
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Job Accommodation Network (JAN). Accommodation Ideas for AIDS/‌HIV.
Morgantown, WV: JAN, 2008. http://www.jan.wvu.edu/media/aids.htm
(accessed February 12, 2010).
Johnson, Lisa M, Alex J Zautra, and Mary C Davis. “The Role of Illness Uncertainty
on Coping with Fibromyalgia Symptoms.” Health Psychology 25, no. 6
(November 2006): 696-703. http://tinyurl.com/‌ykqsjvu (accessed October 2,
2009).
Lightman, Ernie, Andrea Vick, Dean Herd, and Andrew Mitchell. “‘Not Disabled
Enough:’ Episodic Disabilities and the Ontario Disability Support Program.”
Disability Studies Quarterly 29, no. 3 (2009). http://www.dsq-sds.org/article/
view/932/1108 (accessed January 13, 2010).
Littlewood, Rae A, Peter A Vanable, Michael P Carey, and Donald C Blair. “The
Association of Benefit Finding to Psychosocial and Health Behavior
Adaptation among HIV+ Men and Women.” Journal of Behavioral Medicine
31, no. 2 (October 2008): 145-155. http://tinyurl.com/ygacmak (accessed
January 11, 2010).
McClelland, Alex. “Healthy Living.” In Managing Your Health: A Guide for People
Living with HIV. 27-52. Toronto, ON: CATIE, 2009. http://www.catie.ca/eng/
MYH/ch4.shtml (accessed January 15, 2010).
McGee, Michael. “Meditation and Psychiatry.” Psychiatry (Edgmont) 5, no. 1 (January
2008): 28-41. http://tinyurl.com/yzajcvx (accessed February 11, 2010).
McKee, Eileen. “Re-examining the Role of Episodic Disabilities In the Workplace.”
CAPA (Canadian Arthritis Patient Alliance) Voices, Fall 2007. http://tinyurl.com/
yfkl77w (accessed February 11, 2010).
Mental Health Information Line.
Telephone 1-800-661-2121.
Vancouver: 604-669-7600.
Provides taped information on provincial mental health programs as well as
symptoms, causes, treatment, support groups and publications relating to a
number of mental illnesses. Operates 24 hours/‌day.
Mindfulness & Psychotherapy. [blog] http://blogs.psychcentral.com/mindfulness/
Mooney, Michael, and Nelson Vergel. “Exercise: The Best Therapy for Managing Side
Effects: How to Stay Active and Energetic.” Positively Aware: HIV Treatment
and Health, September-October 2009, 28-30. http://positivelyaware.
com/2009/09_05/09_05.pdf (accessed January 21, 2010).
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O’Brien, Kelly K, Ahmed M Bayoumi, Carol Strike, Nancy L Young, and Aileen M
Davis. “Exploring Disability from the Perspective of Adults Living with HIV/
AIDS: Development of a Conceptual Framework.” Health and Quality of Life
Outcomes 6 (October 2008). http://www.hqlo.com/content/6/1/76 (accessed
January 12, 2010).
Pence, B W, J Barroso, J L Harmon, J Leserman, N Salahuddin, and B G Hammill.
“Chronicity and Remission of Fatigue in Patients with Established HIV
Infection.” Abstract, AIDS Patient Care and STDs 23, no. 4 (April 2009): 239-
44. http://tinyurl.com/‌yfr2ktt (accessed February 27, 2010).
Positive Women’s Network. http://pwn.bc.ca/‌ (accessed March 7, 2010).
Resources; support; advocacy; stories/‌community and more for women living
with HIV/‌AIDS in BC.
Qmunity—BC’s Queer Resource Centre (formerly The Centre). http://www.qmunity.
ca/ (accessed March 7, 2010).
“A provincial resource centre offering community services and programs that
celebrate, support and enhance the diverse cultures of queer communities.”
604-684-5307.
Scott-Sheldon, Lori AJ, Seth C Kalichman, Michael P Carey, and Robyn L Fielder.
“Stress Management Interventions for HIV+ Adults: A Meta-analysis of
Randomized Controlled Trials, 1989 to 2006.” Health Psychology 27, no. 2
(March 2008): 129-139. http://tinyurl.com/yhtmku4 (accessed January 8, 2010).
Siegel, K, C J Brown-Bradley, and H M Lekas. “Strategies for Coping with Fatigue
among HIV-positive Individuals Fifty Years and Older.” Abstract, AIDS Patient
Care and STDs 18, no. 5 (May 2004): 275-88. http://tinyurl.com/‌ybj772c
(accessed November 21, 2009).
“St. John’s Wort and Depression.” National Center for Complementary and
Alternative Medicine (NCCAM). http://tinyurl.com/lflv72 (accessed January 20,
2010).
UCLA Semel Institute. “Mindful Meditations.” Mindful Awareness Research Center.
http://marc.ucla.edu/body.cfm?id=22 (accessed March 20, 2010).
8 free MP3 files of guided meditations of various lengths available for
download.
University of Illinois (Chicago) News Bureau, “Mastery of Physical Goals Lessens
Disease-related Depression and Fatigue,” December 15, 2009. http://tinyurl.
com/yhmv9cm (accessed January 27, 2010).
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University of Oxford News Release, “Meditation Provides Hope for People with
Depression,” April 21, 2009. http://tinyurl.com/ygz3spx (accessed January 27,
2010).
Vanable, Peter A, Michael P Carey, Donald C Blair, and Rae A Littlewood. “Impact of
HIV-related Stigma on Health Behaviors and Psychological Adjustment among
HIV-positive Men and Women.” AIDS Behavior 10, no. 5 (October 2008): 473-
482. http://tinyurl.com/yly3zon (accessed January 23, 2010).
“What Is an Episodic Disability?” Canadian Working Group on HIV and Rehabilitation
(Resources). http://tinyurl.com/yeszozw (accessed February 11, 2010).
Zukoski, Ann P, and Sheryl Thorburn. “Experiences of Stigma and Discrimination
among Adults Living with HIV in a Low HIV-prevalence Context: A Qualitative
Analysis.” AIDS Patient Care and STDs 23, no. 4 (April 2009): 267-276. http://
tinyurl.com/y9moqgp (accessed January 25, 2010).
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BC Coalition of People with Disabilities
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HEAL Guides
resources to help,
EDUCATE and inspire
HIV/AIDS & Episodic Disability: Keys to HEALing
HEAL
Health Education Advocacy & Leadership
A project of AIDS & Disability Action Program/Wellness & Disability Initiative
BC Coalition of People with Disabilities
Guides funded by the Provincial Health Services Authority
2010