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SYMPTOM MANAGEMENT STRATEGIES

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SYMPTOM MANAGEMENT STRATEGIES

    SYMPTOM

    MANAGEMENT

    MANUAL

STRATEGIES FOR PEOPLE LIVING

    WITH HIV/AIDS

E-mail: bill.holzemer@nursing.ucsf.edu

    Web site: www.ucsf.edu/aidsnursing

    This manual may be fully copied, translated, and shared. Suggested Citation: Symptom Management Strategies: A Manual for People Living with HIV/AIDS, San Francisco, California: University of California, San Francisco Regents, School of Nursing, January 2004.

    Copyright ? January 2004 by the University of California, San Francisco Regents

    This manual is intended for use by people living with HIV/AIDS, their formal and informal caregivers, and organizations working with these people. Any part of this manual may be copied or adapted without permission to meet your needs, provided that the parts copied are distributed free of charge and that the source is identified. Accepting monies or donations made for any such copies and distribution of this manual in part or in whole without prior permission are strictly prohibited.

Find us on the World Wide Web at www.ucsf.edu/AIDSnursing.

    We would appreciate learning about the use or adaptation of this manual as well as receiving any comments or suggestions. You may send your comments in any of the languages of the manual. Please contact us, care of:

William L. Holzemer, RN, PhD

    University of California, San Francisco School of Nursing

    2 Koret Way, Room N531C, Box 0608

    San Francisco, CA 94143-0608

    USA

    T: 415-476-2673

    F: 415-476-6042

    E: bill.holzemer@nursing.ucsf.edu

Suggested Citation: Symptom Management Strategies: A Manual for People Living with

    HIV/AIDS, San Francisco, California: University of California, San Francisco Regents, School of

    Nursing January 2004.

TABLE OF CONTENTS

    Preface ........................................................................................................................................ i Acknowledgements ............................................................................................................................... i General Symptom Management Strategies ..................................................................................... 1

    Anxiety .............................................................................................................................................. 2 Constipation ...................................................................................................................................... 3 Cough ................................................................................................................................................ 4 Depression ......................................................................................................................................... 5 Diarrhoea ........................................................................................................................................... 6 Dizziness ........................................................................................................................................... 7 Fever .................................................................................................................................................. 8 Forgetfulness ..................................................................................................................................... 9 Loss of Strength (Fatigue).............................................................................................................. 10 Nausea ............................................................................................................................................. 12 Night Sweats ................................................................................................................................... 13 Pain in Arms, Hands, Legs, Feet (Neuropathy) ............................................................................ 14

    Shortness of Breath......................................................................................................................... 15 Skin Abscesses (Boils) ................................................................................................................... 16 Skin Blisters, (Painful) (Herpes Zoster) ........................................................................................ 17 Skin Rash (Dermatitis) ................................................................................................................... 18 Swelling of Arms, Hands, Legs, Feet ............................................................................................ 20 Trouble Sleeping (Insomnia) ......................................................................................................... 21 Weight Loss (Unplanned) .............................................................................................................. 22 White Spots in Mouth (Oral Thrush) ............................................................................................ 24 Vaginal Itching, Burning, and Discharge ...................................................................................... 25 Glossary / Thesaurus .......................................................................................................................... 26

PREFACE

    This manual is a guide for self and family-based care for the management of symptoms commonly experienced by patients living with HIV/AIDS. Living with HIV/AIDS is a challenge for both the infected and affected individuals (family members, friends, caregivers, community members, employers, co-workers, etc.). Coping with and managing the numerous symptoms in all the stages of the illness can be even more daunting. The purpose of this manual is to provide strategies for controlling symptoms for people managing HIV-related symptoms.

ACKNOWLEDGEMENTS

    We would like to offer a special thank you to the persons living with HIV/AIDS and their families who contributed the information upon which this manual is built.

    The manual was initially developed by graduate students at the University of California, San Francisco School of Nursing. Pre and post doctoral trainees supported by a National Institutes of Health’s National Institute of Nursing Research Institutional Training Grant (T32 NR0007081; Holzemer, Program Director), several T32 Seminars were devoted to the initial development of the manual. Faculty: William Holzemer, Carmen Portillo. Pre trainees: Ellen Butensky, Brian Goodroad. Post trainee: Kenn Kirksey.

    The manual further was developed following research done in four Southern African countries that are highly affected by HIV/AIDS: Botswana, Lesotho, South Africa, and Swaziland. This research was supported by the Bristol-Myers Squibb Company’s Secure the Future Foundation

    for the project “Self and Family Care Symptom Management for Persons Living with HIV Disease” (RES009, Holzemer, Principal Investigator).

    Thanks to the University of California, San Francisco (William L. Holzemer, RN, PhD, FAAN) for guidance, and to the University of Botswana (Naomi Seboni, RN, PhD), University of Lesotho (Lucy Nthabiseng Makoae, RN, PhD), University of South Africa (Sarie Human, RN, PhD), and the University of Swaziland (Nonhlanhla A. Sukati, RN, PhD) for making the process possible.

    Special thanks are due to the governments of the four countries (Botswana, Lesotho, South Africa, and Swaziland) for allowing this important research to be conducted in their countries and for allowing their researchers the time to participate in this work. Special thanks also to the traditional healers who were willing to share their care strategies with the researchers.

    Thanks to the research team members for their input, and to Sibusiso Dlamini of the Swaziland National Emergency Response Committee on HIV/AIDS for his work compiling and organizing this version of the manual. Thanks also to Yvette Cuca for her help editing the manual.

Thanks to the Bristol-Myers Squibb Company’s Secure the Future Foundation, which provided

    financial support for the research that partially made this manual possible.

     i

Caring for your HIV-related problem:

    GENERAL SYMPTOM MANAGEMENT STRATEGIES

The first step is always to contact your physician or nurse. By working together, a treatment plan can be

    developed for you. This plan may include prescription or non-prescription medications, counselling, or

    other treatments.

All of these are suggestions and may not be possible in all situations. Do what you can.

Always take your medications as prescribed. Report any side effects or irregularities to your doctor or

    nurse.

     1

Caring for your HIV-related problem:

     NXIETY

    A

    Problem: You may experience constant, worrisome thoughts and tension. You may experience:

    shaking, tight muscles, headache, dizziness, trouble breathing, fast heartbeat, irritability,

    or restlessness. Other symptoms may include: insomnia (trouble sleeping), difficulty

    concentrating, blank mind, or upset stomach.

    This problem may be due to HIV infection, HIV medications, drugs, health problems, or

    other daily life situations.

Treatment: There are many ways to treat this problem. The first step is to contact your physician or

    nurse. If possible, the cause of the anxiety should be identified. By working together a

    treatment plan can be developed for you. This plan may include prescription or non-

    prescription medications, counselling, or other treatments.

Self-care: Here some strategies that you may try to help you feel better:

    ? Try relaxing or stress-reducing activities such as deep-breathing exercises, meditation,

    personal “quiet time”, massage, listening to music or relaxation tapes, getting

    involved in activities (e.g. volunteer work), taking walks, leisure reading, taking a

    warm bath, Tai-Chi, etc.

    ? Consider attending a support group. These are usually free of charge and are often

    offered by HIV organizations in your community. If appropriate, check your phone

    book under "AIDS" or “HIV”, or with your local church. Be sure to check whether a

    group you are planning to attend has a specific focus and that you are interested in

    that topic; participate actively.

    ? Drink less caffeine (coffee, tea, and sodas).

    ? Eat fewer products containing sugar (including sodas).

    ? Go for a walk everyday at your own pace, in your home or outside. Exercise has been

    shown to reduce anxiety, depression, and fatigue.

    ? Drink a cup of warm milk or herbal chamomile tea before going to bed.

    ? Take your medication as prescribed. Report any side effects or irregularities to your

    doctor or nurse.

    ? You may also want to keep a diary to record you thoughts and feelings.

     2

     ONSTIPATION Caring for your HIV-related problem:

    Problem: You may experience problems with constipation, not passing stools for a week and/or

    experiencing a feeling of fullness in the stomach. You may take days before passing a C

    stool.

    Treatment: There are many ways to treat this problem. The first step is to contact your physician or

    nurse. If possible, the cause of the constipation should be identified. By working together

    a treatment plan can be developed for you. This may include prescription or non-

    prescription medications or other treatment.

Self-care: Here are some strategies that you may try to help you feel better.

    ? Check with your physician or nurse before having an enema. You may use a small

    teaspoon of Sunlight? soap (a very mild liquid soap) and lukewarm water.

    ? Eat fruits and vegetables and drink warm water after meals.

    ? Drink plenty of fluids (water, juice, non-caffeinated beverages) at least six to eight

    8-ounce glasses per day.

    ? Eat paw-paw / papaya in the morning with breakfast.

    ? Eat a high roughage diet.

    ? Do not starve yourself.

    ? You may need to do manual removal of impacts. Ask your local nurse about this

    procedure.

    ? Exercise regularly.

     3

Caring for your HIV-related problem: OUGH

     Problem: You may experience different types of cough. It may be persistent and dry, productive Cyellowish, greenish, or whitish.

Treatment: There are many ways to treat this problem. The first step is to contact your physician or

    nurse. If possible, the cause of the cough should be identified. By working together a

    treatment plan can be developed for you. This plan may include prescription or non-

    prescription medications (such as antibiotics) or other treatments. They may also treat the

    pain associated with the cough.

Self-care: Here are some strategies that you may try to help you feel better.

    ? Avoid rough foods that irritate the throat.

    ? Use a cough mixture like Borstol.

    ? Inhale steam, using hot water with Vicks.

    ? Drink sips of hot water or warm fluids. You may add generous amounts of lemon.

    ? Inhale steam, using hot water with morukudu or lengana.

    ? Drink holy water, tea or coffee.

    ? Drink lemon grass tea.

     4

    Caring for your HIV-related problem: EPRESSION

    DProblem: You may feel “blue,” “low,” “depressed,” or “sad.” These feelings may also be

    associated with insomnia (trouble sleeping), weight loss, weight gain, or a change in your

    appetite. You may notice that you do not have any interest in things that once gave you

    pleasure. You may also feel “tired” or “fatigued” much of the time and not be able to

    think or have difficulty concentrating.

Depression is due both to changes in the usual chemicals of your brain and things going

    on in your life. HIV, other medications or health problems can cause depression too.

    Treatment: There are many ways to treat this problem. The first step is to contact your physician or

    nurse. If you feel like you might hurt yourself or others, seek help immediately (eg. by

    calling your local emergency number, like 911), or going to an emergency room. If

    possible, the cause of the depression should be identified. By working together, a

    treatment plan can be developed for you. This plan may include prescription or non-

    prescription medications, counselling or other treatments.

    Self-care: Here are some strategies that you may try to help you feel better:

    ? Try relaxing or stress-reducing activities such as deep-breathing exercises, meditation,

    personal “quiet time”, massage, listening to music or relaxation tapes, getting

    involved in activities (e.g. volunteer work), taking walks, leisure reading, taking a

    warm bath, Tai-Chi, etc.

    ? Get involved in activities such as community groups, support groups, church groups,

    social clubs or sport activities.

    ? Consider attending a support group. These are usually free of charge and are often

    offered by HIV organizations in your community. If appropriate, check your phone

    book under "AIDS" or “HIV”, or with your local church. Be sure to check whether a

    group you are planning to attend has a specific focus and that you are interested in

    that topic; participate actively.

    ? Avoid or reduce your use of alcohol and other mood-altering non-prescription drugs

    (e.g., cocaine, speed, dagga, glue).

    ? Go for a walk everyday at your own pace, in your home or outside. Exercise has been

    shown to reduce anxiety, depression, and fatigue.

    ? Develop a routine of going to bed in the evening and getting up each morning at the

    same time. A good night’s sleep can help you think more clearly. Naps are okay, but

    keep them short and early in the day.

? Get up, wash, and get dressed at a regular time each day.

    ? Take your medication as prescribed. Report any side effects or irregularities to your

    doctor or nurse.

? Read and learn about depression.

     5

    Caring for your HIV-related problem:

DIARRHOEA

Problem: You may experience three or more loose or watery stools (bowel movements) per day.

    (NOTE: If your diarrhoea lasts for several days, you should contact your health care

    provider.)

Treatment: There are many ways to treat this problem. The first step is to contact your physician or

    nurse. If possible, the cause of the diarrhoea should be identified. By working together a

    treatment plan can be developed for you. This plan may include prescription or non-

    prescription medications, or other treatments.

Self-care: Here are some strategies you may try to help you feel better:

    ? Eat frequent, small meals.

     Foods / drinks to consume:

    ? Oatmeal, strawberries, potatoes, apples (peeled and allowed to brown), pears,

    bananas, yoghurt, porridge.

    ? Ten glasses of water per day, oral rehydration solution, barley water, rice water, sour TMmilk, water mixed with custard powder or flour, energy drinks (eg. Gatorade,

    Lucozade), ginger-ale, diluted fruit juice, or ginger tea.

     Foods / drinks to avoid:

    ? Caffeine, fast foods, fried foods, luncheon meats, hot dogs, bacon, chips, dairy

    products (except for yogurt), whole grains, cornmeal, bran, granola, wheat germ, nuts,

    seeds.

    ? Caffeineated, alcoholic and carbonated beverages.

    Supplements:

    ? Acidophilus (you can purchase this nutritional supplement at a health food or drug

    store). Share your plan to take acidophilus with your doctor or nurse before starting.

    this product to make sure it does not interfere with the rest of your treatment plan. TM? Metamucil

    Being prepared:

    ? When planning activities away from home, consider the availability of bathrooms.

    ? Consider taking an extra change of underpants with you if you will be away from

    your home for an extended period of time and an extra roll of toilet paper. Bring

    along (hand wipes) to clean your hands.

    ? Use absorbent shields to prevent the leakage of diarrhoea onto clothing.

    Skin care:

    ? Keep your skin clean by washing with warm water after each bowel movement if you

    can. Dry the skin thoroughly.

    ? If the skin is intact (no open cut), apply a cream containing petroleum (such as TMVaseline or A&D ointment) to protect the skin. (If the skin is open, contact your

    health care provider in case of infection, or for a prescription-strength ointment).

    Also consider soothing ointment such as fizzan paste.

    ? Consider carrying a squeeze bottle filled with warm water and a spray cleaner with

    you when you go out, for personal hygiene.

     6

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