Appraisal and Management of Fatigue Among Older HIV+ Adults

Appraisal and Management of Fatigue Among Older HIV+ Adults

Courtney J. Brown-Bradley, MPH, Karolynn Siegel, PhD, and Helen-Maria Lekas, PhD

Center for the Psychosocial Study of Health and IllnessMailman School of Public Health

Columbia University

Symptoms and Illness Behaviors of HIV-Infected Adults

• NIA funded study (R01 AG16571)

• Principal Investigator: Karolynn Siegel, Ph.D.

• In-depth interviews with 100 HIV+ adults (50+) in New York City area

• Each participant discussed 3 symptoms

• 49 participants discussed fatigue

Symptoms and Illness Behaviors of HIV-Infected Adults

Objectives • To investigate the symptom appraisal process for

common disease and treatment-related symptoms (i.e. the assigning of cause and significance to symptoms) among HIV-infected adults

• To investigate HIV-infected adults’ coping responses to common disease and treatment-related symptoms

• To investigate how symptoms influence HIV-infected adults’ treatment acceptance and adherence behaviors

Symptoms and Illness Behaviors of HIV-Infected Adults

• Data were collected between November 2000 and February 2002

• Symptom experiences were gathered using nondirective focused interviewing techniques

• Text coded using content/thematic analysis

• Atlas.ti used to facilitate analysis

Symptom Interpretation

• A search for meaning

• Assignment of cause to the symptom

• Evaluation of its personal significance

• Influenced by a variety of factors

• Motivation to attribute to non-threatening causes

• Attribution influences coping responses

Fatigue in HIV

• Highly prevalent symptom among HIV+ persons (37-98%)

• Often diminishes physical and mental functioning,

psychological well-being, & overall quality-of-life • Has many potential causes, including

immunosuppression, anemia, depression, medications, OIs, & hormonal dysfunction

Fatigue in HIV

• Prior research has focused primarily on clinical management of fatigue - the identification, prevention and/or treatment of underlying causes

• Far less research has focused on the personal

experience of fatigue or self-initiated strategies for managing it (see Corless, 2002; Barosso, 2001; Rose, Pugh, Lears & Gordon, 1998)

Fatigue Sample: Demographics

• 67% male; 33% female• Blacks, Hispanics, & Whites each made up 33% of sample;

one case classified as “other”• Age: Mean = 55.7; Range = 50-71

• 82% was 50-58 years of age• Time since diagnosis: Mean = 8 years and 8 months; Range

= 22-198 months• Ever had T-cell count <200: 67%• History IVDU: 40%; Current IVDU: 4%

Fatigue Sample: Demographics

• Education: 25% < HS; 16% HS grad; 25% some college; 35% grad of 4-year college or more

• Annual Income: 55% < $10,000; 29% - $10 – 19,999; 6% - $20 – 34,000; 10% > $35,000

• Sexual orientation: 44% completely heterosexual, 35% completely homosexual

• Marital status: 4% common law marriage; 27% separated/divorced; 14% widowed; 55% single never married.

• Partner status/ living situation: 31% had steady partner; 67% lived alone

• Children: 53% had children; 14% had children living in their home

Causal Attributions for Fatigue

• Fatigue (included tiredness, fatigue & lack of energy)• Nearly all had multiple attributions and had difficulty

isolating causes. Contributing factors were assumed to operate simultaneously

• HIV was most common attribution; fatigue is “part of the virus”

• Consistent with participants’ illness representation for HIV/AIDS

Attributions to HIV

• HIV as “master attribution” - any new symptom attributed to HIV

• Many bodily changes since HIV diagnosis• Fatigue - indicator of disease progression• Reliance on contextual information - occurrence

alongside other clinical changes or HIV symptoms• Use of social comparison or information from peers• Some experienced uncertainty over age or AIDS as

cause of fatigue

Attributions to other causes

• Frequently occurred in conjunction with HIV attribution

• Toxic side-effects of medications• Medication attribution more common among

males who were also more likely to be on HIV medication

• Comorbidities – rival HIV as explanations for fatigue

Attributions to other causes

• Overexertion, stress, diet or lack of vitamins, lack of rest, sleeping problems, weather, or drug withdrawal also mentioned

• Depression less frequently reported as presumed cause than expected

Sources of information in appraisal of fatigue

• Most discussed possible causes with HCP (e.g. doctor, nurse, dietician)

• Over half discussed it with lay people (e.g. family, friends, support group members)

• HIV most common cause suggested by others• Overlap between causes HCPs and lay people offered, and

those participants believed to be the cause• Participants offered more causes than suggested by others

Coping with Fatigue

• Nearly all utilized self-care or sought traditional medical care

• Most used both approaches

• Several initially took a “wait and see” approach

• Most participants tried to manage fatigue on their own before seeking medical care

Coping with Fatigue: Self-Care

• Frequently used general health improvement approaches• reflects the notion that fatigue or vigor is an indicator of overall

health status

• used alternative and traditional therapies to boost immune system

• Addressed other perceived underlying causes • improved diet or took vitamins

• exercised to avoid lethargy from inactivity

• rested to avoid exhaustion from overexertion

Coping with Fatigue: Self-Care

• Tried to minimize or eliminate factors that exacerbated fatigue• stopped or cut back on smoking

• tried to manage stress level

• strategically scheduled activities to avoid

peak fatigue times

• paced activity/exertion level

• Received suggestions from family, friends, support group members

Coping with Fatigue: Health Care Seeking

• Generally discussed it during routine visit• Most providers offered suggestions for

managing fatigue• Providers often tested for underlying causes (e.g. anemia,

testosterone deficiency) and suggested interventions to address those causes

• Providers also recommended lifestyle changes (e.g. dietary changes, exercise balanced with rest, smoking cessation, vitamins and supplements)

• Reasons for not seeking care: not serious enough problem given time constraints of visits; provider cannot doing anything about fatigue

Coping with Fatigue: Complementary & Alternative Medicine

(CAM)• Nearly half of the sample tried CAM to manage fatigue• Always used in conjunction with “more traditional” self-

care or medical care• Physicians sometimes recommended initiating or

continuing CAM to alleviate fatigue• Common strategies included herbs and minerals, special

juices, acupuncture, meditation, & massage

Fatigue in HIV: Appraisal & Management

Conclusion:• Fatigue was a part of participants’ illness representation

of HIV disease• Nearly all attributed fatigue in part to HIV, but typically

to other causes as well• Given the number of credible explanations for fatigue, it

may be a symptom that lends itself to ambiguity re cause• Most had been HIV+ for years – may have been difficult

to deny fatigue was HIV-related

Fatigue in HIV: Appraisal & Management

Conclusion (cont’d):• Nearly all tried multiple strategies to alleviate their fatigue• Most tried suggestions offered by HCPs• Some may avoid or delay seeking care for fatigue – seen as

inevitable or lower priority• HCPs can assist PLWHA by routinely asking them about

their energy levels- Assist in early identification of potentially treatable

causes- Aid in management of fatigue and accommodation of routine