Presentation by:

Rosemary Bakasa PhD, RN

BSN Program Director

Bryant & Stratton College

• Identify HIV/AIDS family caregivers who are at risk of developing physical and health problems

• Describe the relationship between stress, coping, social support, and physical and mental health problems among family caregivers of HIV/AIDS patients.

• Outline nursing interventions aimed at reducing the effects of stress on physical and mental health of family caregivers.

• To examine the relationships between stress, coping, social support and the physical component summary (PCS), the mental health component summary (MCS) and CES-D mental health among family caregivers of HIV/AIDS patients in Zimbabwe.

• An estimated total of 39.5 million people in the world were living with the Human Immunodeficiency Virus(HIV)/Acquired Immunodeficiency Syndrome (AIDS) as of end of year 2006 (UNIAIDS, 2006).

• The growing number of people affected by HIV/AIDS has led to an increased need for informal care as an important element of delivery of healthcare for people with HIV/AIDS.

• Therefore, many family members found themselves taking up the caregiving role in order to provide care at home for patients with HIV/AIDS.

• In addition, the hospitals are overwhelmed by the increased demand and unable to provide inpatient care for these patients.

• Zimbabwe has a high incidence of HIV/AIDS.

• 25% of the population aged 25-45 are infected with HIV.

• Increased number of ill people, scarce health care resources, and poverty led to high a demand for home care by family caregivers.

• Physical and mental health of these family caregivers was the focus of this study.

How stress from the caregiving role affects the physical and mental health of caregivers of HIV/AIDS patients still needs exploration in order to be fully understood.

To determine if: • Stress, coping, social support and demographic variables were able to

explain the variance in physical and mental health among family caregivers of HIV/AIDS patients in Zimbabwe.

• Coping will play a mediating role in the relationship between stress and caregivers’ physical and mental health.

• Social support will play a moderating role in the relationship between stress and caregivers’ physical and mental health.

• Based on cognitive theory of stress and coping (Lazarus & Folkman, 1984)

• Stress conceptualized as a transaction between the person and the environment.

• Coping constantly changing cognitive and behavioral efforts to manage demands.

• Social support a resource to strengthen the person’s ability to deal with stressors.

1. What are the relationships between stress, coping, social support, caregivers’ age, gender, caregiver-receiver relationship, duration of caregiving, and severity of illness and physical (PCS;MCS) and CES-D mental health among family caregivers of HIV/AIDS patients in Zimbabwe?

2. Are stress, coping, and social support able to explain the variance in physical (PCS;MCS) and CES-D mental health?

3. Are stress, coping, and social support able to explain the variance in physical (PCS;MCS) and CES-D mental health when controlling for caregivers’ age, gender, caregiver-receiver relationship, duration of caregiving, and severity of illness?

4. Does coping play a mediating role between stress and physical and mental

health among family caregivers of HIV/AIDS patients in Zimbabwe?

5. Does social support play a moderating role between stress and physical and mental health among family caregivers of HIV/AIDS patients in Zimbabwe?

6. Does coping play a mediating role in the relationship between stress and physical (PCS;MCS) and CES-D mental health when controlling for caregivers’ age, gender, caregiver-receiver relationship, duration of caregiving, and severity of illness?

7. Does social support play a moderating role in the relationship between

stress and physical (PCS;MCS) and CES-D mental health when controlling for caregivers’ age, gender, caregiver-receiver relationship, duration of caregiving, and severity of illness?

8. What factors do family caregivers of HIV/AIDS patients in Zimbabwe describe as stressors in their caregiving situation?

• Stress: Perceived Stress Scale (PSS) (Cohen, Kamarck, & Mermelstein, 1983)

• Coping: Modified Ways of Coping Checklist (M-WOC) (Smyth & Yarandi,

1996)

• Perceived social support: Personal Resource Questionnaire (PRQ 85) Part 2.

• Physical Health: Medical Outcomes Study-Short Form 36 General Health Survey (MOS)(Stewart, Hays, & Ware, 1988)

• Mental health: Center for Epidemiological Studies (CES-D) Depression Scale (Radloff,1977).

• Non-experimental

• Descriptive

• Exploratory

• Correlational

• Convenience sample of 133 subjects; Alpha .05, desired effect size 0.15 and power .80. Based on Gpower computation.

• Aged between 18 and 75 years

• Cared for and lived with a family member diagnosed with HIV/AIDS (minimum of 6 months).

• Permission from Zimbabwe Medical Research Council, Harare Hospital and Case Institutional Review Board (IRB).

• Subjects signed an informed consent.

• Training of data collectors

• Face -face Interview Method

• Informed consent

• Voluntary participation

• Anonymity

• Confidentiality

• Cultural awareness

• Descriptive Statistics

• Pearson-product moment correlations

• Hierarchical multiple regression analysis.

• The Sample – 133 Family caregivers

• Aged 18-75 (mean 34.9; SD 11.9)

• Predominantly Female (64.7%; N=86)

• Married ( 61.7%; N=82)

• Over Half completed High School (68.4)

• Unemployed (33.8; N= 45) or Self employed (32.3%; N= 43).

• Yearly income from zero (12.8%; N=17) to ZW$525 (0.8%; N=1)

• (ZW$ 87.7 thousand = 100US$)

• Care receivers aged 15 – 65 years

• Predominantly male (51.9%; n= 69)

• Caring for others (24.1%; n= 32)

• Caring for husband (19.5 n=26)

• Caring for a sister (18% (n=24)

• Severity of illness rating:

o Moderate (47.4; N= 63) o Severe (41.7%; N=55)

• Hours of caregiving/day: 2 – 24 hours

• Duration of caregiving: 6 - 96 months

• Providing care to a family member diagnosed with HIV/AIDS is very stressful

• Caregivers who perceived higher levels of caregiver stress and used more avoidant coping were more likely to report poor physical and mental health and more depressive symptoms

• Caregivers who perceived more social support and used more active coping were more likely to report better physical and mental health and less depressive symptoms.

• Coping acted as a mediator in the relationship between caregiver stress and physical health.

• Greater use of coping strategies was associated with a significant decrease in the effect of caregiver stress on physical health resulting in higher (better) physical health scores.

• Caregivers who used less avoidant coping, more active coping, more minimizing the situation and more social support were more likely to report lower levels of caregiver stress and consequently higher (better) mental health scores.

• Social support did not act as a moderator between caregiver stress and physical health

• Social support played a moderating role in the relationship between caregiver stress and depressive symptoms

• Higher levels of social support in the presence of higher caregiver stress resulted in less depressive symptoms.

Qualitatively 10 Themes were identified: • Watching relative’s health deteriorate (18.8%;n=25)

• Limited or no money for food, drugs and transportation

(4.3%;n=19)

• Fear of contracting HIV/AIDS (12.8%;n=17)

• Aggressive care receiver behavior (10.5%;n=14)

• Isolation from family and community due to stigma (9%;n=12)

• Strained family relationships (12.8%;n=17)

• No respite (7.5%;n=10)

• Fear of death (5.3%;n=7)

• Inadequate knowledge about HIV/AIDS (4.5%;n=6)

• High Caregiving demands (4.5%;n=6)

• Higher levels of perceived caregiver stress, more use of avoidant coping were associated with lower physical health component (PCS) scores.

• Higher levels of perceived social support, more use of active coping and minimizing the situation were associated with higher physical health component summary (PCS) scores.

• Higher levels of stress, severe care receiver’s illness, more use of avoidant coping and more use of minimizing the situation were associated with higher SF 36 mental health component summary (MCS) scores.

• More social support, and more active coping were associated with lower SF 36 mental health component summary (MCS) scores.

• More stress, avoidant coping, and severity of illness were associated with higher CES-D mental health scores.

• More social support, more active coping, and more use of minimizing the situation were associated with lower CES-D mental health scores.

• Perceived stress, active coping, avoidant coping, minimizing the situation and social support explained 39% of the variance in the physical health component summary (PCS) scores.

• Active coping was relatively the most important contributor (r =.35). • The variance in the physical health component summary (PCS)

scores increased to 42% when demographic variables were controlled for.

• Perceived stress, active coping, avoidant coping, minimizing the situation, and social support explained 50% of the variance in the SF 36 mental health component summary (MCS) scores.

• Social support was relatively the most important contributor (r =.41).

• The variance in the SF 36 mental health (MCS) scores increased to 53% when demographic variables were controlled for.

• 68% of the variance in CES-D mental health was explained by perceived stress, active coping, avoidant coping, minimizing the situation, and social support.

• Perceived stress was relatively the most important contributor (r =.48).

• The variance in CES-D mental health scores increased to 71% when demographic variables were controlled for.

• Active coping and avoidant coping played a statistically significant mediating role between caregiver stress and physical component summary (PCS).

• Avoidant coping and minimizing the situation played a statistically significant mediating role between caregiver stress and the SF 36 mental health component summary.

• Active coping, avoidant coping and minimizing the situation played a statistically significant mediating role between caregiver stress and the CES-D mental health.

•

• When demographic variables were controlled: o Active coping maintained its mediating effect while avoidant coping

became statistically non significant in the relationship between caregiver stress and the physical health component summary (PCS).

o Avoidant and minimizing the situation maintained their mediating effect in the relationship between caregiver stress and the SF 36 mental health component summary (MCS).

o Active coping maintained its mediating effect while avoidant coping and minimizing the situation became statistically non significant in the relationship between caregiver stress and the CES-D mental health.

•

• Social support did not moderate the effects of caregiver stress on both the physical health component summary (PCS) and the SF 36 mental health component summary (MCS).

• Social support acted as a moderator in the relationship between caregiver stress and the CES-D mental health.

• When demographic variables were controlled:

o Social support did not moderate the effect of caregiver stress on the physical health component summary (PCS).

o Social support became a moderator in the relationship between caregiver stress and the SF 36 mental health component summary (MCS).

• When demographic variables were controlled:

o Social support did not moderate the effect of caregiver stress on the physical health component summary (PCS).

o Social support became a moderator in the relationship between caregiver stress and the SF 36 mental health component summary (MCS).

o Social support maintained its moderating effect in the relationship between caregiver stress and the CES-D mental health.

• Non-experimental correlational exploratory design

• No baseline data on health outcomes

• Relationships measured at a single time point

• Non probability convenience sampling

• Instruments translated and being used for the first time in Zimbabwe

• Knowledge Development

o Provides additional evidence of the usefulness of the cognitive theory of stress and coping (Lazarus and Folkman, 1984)

o Adds to the theoretical understating of concepts and can be compared with findings from other studies

o Provide a guide for further research

• Nursing Practice

• Early detection of decline in caregiver health

• Provides an understanding of concepts studied and need to include caregiver in assessment

Helps Nurses to: • Identify potential sources of stress, coping strategies and social support

• Develop appropriate nursing interventions for caregivers

• Encourage caregivers to use appropriate coping strategies, seek social

support

• Understand and address the factors (stressors) that make the caregiving situation stressful

Nursing Education: • Curriculum revision to include caregiver in care plan

• Incorporate findings from this study into curriculum

• Teach student nurses and nurses about the relationships between

stress, coping, social support

• And health outcomes among family caregivers of HIV/AIDS patients.

Health Care Policy: • Government to review and strengthen provision of resources for

caregivers

• Government to implement policies and programs that benefit caregivers

• Knowledgeable nurses can be advocates for caregivers and lobby for policy change

• Replicate the study using random sampling

• Longitudinal study method to assess health outcomes over time

• Develop new instruments to address the unique caregiving situation in Zimbabwe.

• Evaluate psychometric properties of translated instruments in various settings.

• Develop intervention studies to help equip caregivers with knowledge and skill to cope with the role.