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HIV: Effective Tools & Techniques for the Caregiver
HIV: Effective Tools & Techniques for the Caregiver (Abbreviated)

Section 7
Health Risks Among Female Caregivers of HIV Positive Clients

Question 7 | Answer Booklet | Table of Contents | HIV/AIDS

In vulnerable populations research, a relationship is proposed among resource availability, relative risk and health status. Female informal caregivers may be considered a social group, vulnerable to adverse health outcomes because of limited resources and increased exposure to conditions (risks) that contribute to poor health. A lack of socioeconomic and environmental resources contributes to the vulnerability of women. Poverty, unemployment and lower levels of educational attainment represent a lack of socioeconomic resources that are consistently linked to poor health (Adler et al. 1994, Link & Phelan 1996). Often women live in poverty with low social status and jobs paying salaries averaging 30-40% less than men's salaries (Bureau of the Census 1997, 30 September, Thomas 1997). Furthermore, ethnic women of colour compared with whites, experience more than twice as much poverty and unemployment (Bureau of the Census 1997, Department of Labor 1997). Other social resources that are often unavailable to women are social status, connection and power (Schiller 1993, Sher 1993, Amaro 1995). There is social inequality in role relationships with partners, employers and service agencies (Thomas 1997). Additionally, female-headed households (22% of family households in the USA) have fewer social connections, economic resources and limited access to community resources (Aday 1993, Bureau of the Census 1997). Ethnic women of colour are heads of households twice as often as white women (Bureau of the Census 1997).

This group of informal caregivers experienced both physical and mental health problems. Other investigators have found poor physical health and depressive symptoms among AIDS and ARD caregivers (Lieberman & Fisher 1995, Leblanc et al. 1997, Meshefedjian et al. 1998). However, the use of a vulnerable populations' framework offers an alternative explanation for the health status of informal caregivers. Rather than relating only individual and interpersonal characteristics to health outcomes, a vulnerable populations' framework relates resource availability and risk exposure to health outcomes, in the total sample, resource variables (income and minority ethnicity) contributed the most to the explanation of health status in this sample of caregivers. Other studies also have found low income and minority ethnicity to be significantly associated with depressive symptoms and poor physical health among caregivers (McNaughton et al. 1995, Russo et al. 1995, Cefalu et al. 1996, Leblanc et al. 1997, Turner & Catania 1997, Meshefedjian et al. 1998). Caregivers with fewer resources, less income and minority social status may have more health problems because they lack resources to obtain assistance with the objective demands of caregiving (Cox & Monk 1993, Cox 1995, Turner & Catania 1997, Meshefedjian et al. 1998). Resources (income, ethnicity) may have explanatory power for health status for these reasons.

One risk variable (anger) had explanatory power for depressive mood. Anger was more common in caregivers of PWHIV. Phillips and Thomas (1996) found anger to be common in HIV caregivers, anger directed towards both the self and the care receiver. However, other investigators have found verbal and physical aggression also against demented elderly by informal caregivers (Pot et al. 1996).

Depressive symptoms contributed to the explanation of perception of physical health problems in this study. Depressive symptoms were more common in PWHIV caregivers. Despite the fact that caregivers of PWHIV were considerably younger than those of PWARD and might be expected to perceive fewer physical health problems, both groups perceived health problems and more caregivers of PWHIV perceived their health to be poor. Younger age may be related to depressive symptoms and poorer perception of health because of the ‘untimeliness’ of the care given to receiver's illness, the multiple developmental roles and demands of younger caregivers and the low level of preparation for the caregiver role in younger persons (Turner & Catania 1997, Raveis et al. 1998).

The study was limited by sample size and use of a convenience sample. Several other variables may have had a significant relationship with the dependent variables with a larger sample size. Sample size and setting also limit generalizability of the findings. The sample of caregivers of PWARD lacked ethnic diversity, however, caregivers of PWHIV were ethnically diverse and represent an understudied group of female caregivers. Several variables that were not studied may have explanatory value for health status. Other explanations for the mental and physical health problems experienced by caregivers may be related to social and resource variables that were not addressed in this study. These include the stigma of AIDS and ARD, and the availability of resources such as health insurance, access and availability of care, and quality of care. These variables may have added to the explanation of health status and should be considered in future studies.
What is clear from the findings here and those of other studies is that caregivers are in need of tangible resources and support services in order to handle the demands of caregiving and to protect themselves from negative health outcomes (Wight et al. 1995, Turner & Catania 1997). Although there were differences in the two groups of caregivers, there were many similarities, enough to recommend a general but flexible model of resources and supportive services for informal caregivers. Primary health care services and case management seem best suited to provide a comprehensive and wholistic approach to both physical and mental health problems. The primary health care professional should consider the dyad, both caregiver and receiver, as the clients of care and should integrate their mental and physical health care. Ideal primary health care services would include physical, neuropsychiatric and psychosocial assessment, expertise in treatment of HIV and/or ARD, prescription, pharmacological treatment of depression, expertise in structured environments and in community referrals (Corcoran & Gitlin 1992, Feingold & Slammon 1993, Cohen et al. 1994). Any model of primary health care services must also address the distressing emotions dominated by anxiety, anger and loneliness in the caregivers. Primary care services would include counselling and focus on active listening, facilitating the expression of emotion, anger and anxiety, and encouraging and reinforcing caregiver strengths and the rewards of caregiving.

Although support groups may seem the logical answer to loneliness, there are many reasons for caution. Support groups may not be easily accessible because of a variety of common factors such as lack of transportation and respite care but also to other factors such as stigmatization and family desertion and isolation of the caregiver (Flaskerud & Tabora 1998). Support groups may not be consistent with caregiver cultural values and traditions or with caregiving ideology (Lawton et al. 1992, Mintzer et al. 1992, Cox & Monk 1993, Ganzer & England 1994, Boyle et al. 1997). Mobilizing the caregiver's traditional support system whether it be the family, church or a social group might be of more benefit. Such an approach would have to include an educational component for the family, church or social group that dealt directly with stigma and moral judgements, and reluctance to discuss problems outside the family. This type of intervention is more successful when the nurse and family collaborate in defining and managing the problem.
Home visits by a community nurse or home health care worker might also be part of the case management approach. Such visits would provide an opportunity to assess the caregiver's home environment at regular intervals and then adapt and/or reinforce the teaching and counselling given during primary health care clinic visits. Home visits would provide an opportunity to further collaborate on caregiver and care receiver health problems and make changes in health services as needed. These visits would also act to decrease the isolation and loneliness experienced by the caregiver and might have the sideeffect of involving additional family members in caregiving.
- Flaskerud, Jacquelyn H and Patricia Lee; Vulnerability to health problems in female informal caregivers of persons with HIV/AIDS and age-related dementias; Journal of Advanced Nursing; January 2001; Vol. 33 Issue 1

Personal Reflection Exercise #3
The preceding section contained information about health risks in female caregivers of AIDS clients.  Write three case study examples regarding how you might use the content of this section in your practice.

What are five barriers to female caregivers attending support groups?
To select and enter your answer go to Answer Booklet

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