Children caring for their ill parents with HIV/AIDS

Abstract

Children orphaned by HIV/AIDS experience not only the trauma of a parent's death, but the stress of living with and often caring for an ill and dying parent. We interviewed 50 mothers ill from HIV/AIDS in both Mutare, Zimbabwe and New York, USA, and one child of each aged 8–16 about personal assistive care the child provided; other household responsibilities; hours/day children spent on chores; and parental/child mental health. Children provided substantial amounts of personal care; took responsibility for cooking, cleaning, shopping and other household tasks; and some were their parents' confidants. The amount of care provided was related to maternal disability, not child age, gender, or presence of other adults/siblings. Children reported performing more tasks than their mothers reported. Almost half of New York and 80% of Mutare children said they had too much responsibility, and most reported reduced after-school and peer activities. Both children and parents felt children were more capable because of their responsibilities. Depression rates in New York and Mutare children were high but Mutare children were extremely vulnerable; two-thirds had depression scores in the clinically significant range. However, child caregiving was unrelated to depression. Research to better understand the role of child caregivers is still needed.     

Women with HIV/AIDS: fragments of their hidden face

The study aimed at determining factors that generate the fear visiting upon HIV-positive women and consequences in routine family, work and social life relations. The method employed is of qualitative nature Women with HIV/AIDS that were followed at the Health Clinic of S?o Leopoldo-RS were focused. Data collection was performed by a semi-structured interview, seeking 18 women, from 23 to 55 years old. Discrimination in the family and at the workplace and loss of friends constitute a factor of constant fear and exert an influence on the women's social behavior. The fear is also related to the women's image and social isolation.     

HIV Discrimination and the Health of Women Living with HIV

ABSTRACT

Women living with HIV are especially vulnerable to discrimination because of the stigma associated with the disease, as well as their race, gender and class status. To investigate the association between self-reported HIV discrimination and health outcomes among African-American and white women living with HIV, 366 women living with HIV were recruited from HIV/AIDS clinics in Georgia and Alabama. In this cross-sectional study, participants completed an interview that assessed self-reported HIV discrimination and depressive symptomatology, suicidal ideation, self-esteem, stress, quality of life, sexual health and HIV/AIDS related health care seeking. Nearly a sixth of the sample reported experiencing HIV discrimination. Women reporting HIV discrimination had higher mean scores for stress, suicidal ideation, depressive symptoms, number of unprotected sexual episodes; they had lower mean scores for self-esteem, and quality of life, and were more likely to have not sought medical care for HIV/AIDS. In race-specific analyses, none of the relationships between HIV discrimination and health outcomes were significant for white women. African-American women who reported HIV discrimination had higher mean scores for stress, suicidal ideation, depressive symptoms, number of unprotected sexual episodes; they had lower mean scores for self-esteem, and quality of life, and were more likely not to have sought medical care for HIV/AIDS. The findings indicated that HIV discrimination adversely affects women's mental, sexual and physical health. However, separate race-specific analyses indicated that compared to white women, African-American women were markedly more likely to experience the adverse affects of HIV discrimination. Eradication of HIV discrimination remains an important public health priority.     

Women and HIV

HEALTH ISSUE: The epidemic of human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) in developed countries has changed from the early epidemic that affected primarily men who have sex with men, to one that increasingly affects other groups such as injecting drug users (IDU) and heterosexuals. As a result, the number and percentage of women with HIV and AIDS is increasing. KEY FINDINGS: The number of women in Canada living with HIV, including those with AIDS, has increased over time. An estimated 6,800 women were living with HIV at the end of 1999, an increase of 48.0 % from the 1996 estimate of 4,600. On an annual basis, women account for a growing proportion of positive HIV test reports among adults in Canada. This proportion increased from 10.7% in the period 1985-95 to 25% in 2001. Heterosexual contact is the main risk factor for HIV infection in women, accounting for 63% of newly diagnosed cases of HIV infection in adult Canadian women in 2001; the majority of the remainder is due to IDU. KEY DATA GAPS AND RECOMMENDATIONS: Research is needed to address specific information gaps regarding risk behaviours, testing patterns and HIV incidence and prevalence in women. This research needs to include the broader contextual factors that influence women's lives and their risk of HIV infection. Programmes and prevention efforts must be gender and age-specific and should target not only individual behaviours, but also the social and cultural context in which these behaviours occur.     

Women and HIV disease

Women are vulnerable to the acquired immunodeficiency syndrome (AIDS), and are now contracting the disease at a faster rate than men. However, many are ignorant of their potential risk of infection and it is only recently that the scientific community has begun to look at human immunovirus (HIV) infection in women. The media and statistical reporting still lag behind.     

The psychosocial burden of caring for some Nigerian women with breast cancer and cervical cancer.

In Nigeria, the rising incidence of cancer and the paucity of institutional facilities and specialist man-power implies that the burden of care rests largely on relatives. We assessed the severity of indices of psycho-social and economic burden among relatives of women with breast and cervical cancer; and its relationship with patients' psychosocial distress. Using a burden questionnaire, relatives of 73 women with cancer (41 cervical and 32 breast, mean age of caregivers 35.6 years) were interviewed, in out-patient clinics. While the caregivers admitted high frequency of all indices of 'objective' burden, emotional ties at home and social relationships in the neighbourhood seemed intact, indicating tolerance and lack of social stigma. The financial burden was more problematic than the effect of caring on family routines; and these two factors significantly predicted global rating of burden. The severity of patient's worries and psychopathological symptoms were not significantly correlated with care-giver global rating of burden. The tolerance shown by this group of relatives implies that they have strong potentials for playing useful roles in community care of patients.     

Women,Violence, and HIV: A Critical Evaluation with Implications for HIV Services

Objective: Violence is highly prevalent among women with HIV. Determining whether HIV is causally related to violence, and whether risk for violence is increased by certain HIV prevention practices, has been difficult. Methods: We review recent literature concerning (1) violence and HIV serostatus, including the risk for violence associated with disclosure of a positive serostatus, and (2) violence associated with requests that male sex partners use condoms. Results: Studies suggest that women with or at risk for HIV come from populations that are also at risk for violence. Violence is not statistically increased among HIV-infected women compared to demographically and behaviorally similar uninfected women. However, for a small proportion of women, violence may occur around disclosure or in response to condom negotiation. Conclusions: Integrating violence screening and referral into HIV services could help many women obtain the assistance they need while minimizing the risk for violence that may be associated with partner notification or condom requests.     

Envisioning Women-Centered HIV Care: Perspectives from Women Living with HIV in Canada

BackgroundWomen comprise nearly one-quarter of people living with human immunodeficiency virus (HIV) in Canada. Compared with men, women living with HIV experience inequities in HIV care and health outcomes, prompting a need for gendered and tailored approaches to HIV care.MethodPeer and academic researchers from the Canadian HIV Women's Sexual and Reproductive Health Cohort Study conducted focus groups to understand women's experience of seeking care, with the purpose of identifying key characteristics that define a women-centered approach to HIV care. Eleven focus groups were conducted with 77 women living with HIV across Quebec, Ontario, and British Columbia, Canada.ResultsWomen envisioned three central characteristics of women-centered HIV care, including i) coordinated and integrated services that address both HIV and women's health care priorities, and protect against exclusion from care due to HIV-related stigma, ii) care that recognizes and responds to structural barriers that limit women's access to care, such as violence, poverty, motherhood, HIV-related stigma, and challenges to safe disclosure, and iii) care that fosters peer support and peer leadership in its design and delivery to honor the diversity of women's experiences, overcome women's isolation, and prioritize women's ownership over the decisions that affect their lives.ConclusionDespite advances in HIV treatment and care, the current care landscape is inadequate to meet women's comprehensive care needs. A women-centered approach to HIV care, as envisioned by women living with HIV, is central to guiding policy and practice to improve care and outcomes for women living with HIV in Canada.     

Challenges facing providers caring for HIV/HCV-coinfected patients

Despite the high prevalence of hepatitis C virus (HCV) infection among injection drug users also infected with human immunodeficiency virus (HIV), and the synergistic adverse effect of the two diseases on patients' health and survival, research on the clinical management of these patients and particularly the low uptake of HCV therapy is limited. We conducted qualitative interviews with 17 HIV providers from two urban public hospitals. We discovered that the limitations of the current state of medical knowledge, the severe side effects of HIV and HCV therapies, and the psychosocial vulnerability of HIV/HCV-coinfected patients combined with their resistance to becoming informed about HCV posed significant challenges for providers. To contend with these challenges, providers incorporated key dimensions of patient-centered medicine in their practice, such as considering their patients' psychosocial profiles and the meaning patients assign to being coinfected, and finding ways to engage their patients in a therapeutic alliance.     

The economic burden of home care for children with HIV and other chronic illnesses

OBJECTIVES: We compared types, amounts, and costs of home care for children with HIV and chronic illnesses, controlling for the basic care needs of healthy children to determine the economic burden of caring for and home care of chronically ill children. METHODS: Caregivers of 97 HIV-positive children, 101 children with a chronic illness, and 102 healthy children were surveyed regarding amounts of paid and unpaid care provided. Caregiving value was determined according to national hourly earnings and a market replacement method. RESULTS: Chronically ill children required significantly more care time than HIV-positive children (7.8 vs 3.9 hours per day). Paid care accounted for 8% to 16% of care time. Annual costs were $9300 per HIV-positive child and $25,900 per chronically ill child. Estimated national annual costs are $86.5 million for HIV-positive children and $155 to $279 billion for chronically ill children. CONCLUSIONS: Informal caregiving represents a substantial economic value to society. The total care burden among chronically ill children is higher than that among children with HIV.     

Unique aspects of caring for dying children and their families

Pediatric hospice has become an important service for children and their families in the past decade. In this article we present unique aspects of StarShine, the hospice of Children's Hospital Medical Center in Cincinnati, Ohio. Length-of-service data demonstrate the need to find innovative ways of encouraging earlier referral to hospice. Several specialized aspects of care, such as long-term bereavement, pet visitation and social services for the family are presented. The initiation of a novel in-home pain management program is described. StarShine has not followed an adult hospice model, and as such, we discuss those unique aspects of dying pediatric patients and suggest specific solutions and interventions designed for children.     

Women living with HIV: Disclosure, violence, and social support

This paper describes the frequency of women's disclosure of their HIV status, examines the extent to which they experience adverse social and physical consequences when others learn they are infected, and analyzes correlates of these negative outcomes. There were 257 HIV-positive women between the ages of 18 and 44, recruited from HIV/AIDS primary care clinics and from community sites, who completed a face-to-face interview. Women in the sample were 33 years old on average; 92% were African-American; 54% had less than 12 years of education; 56% had used intravenous drugs; and 30% knew they were HIV positive for 5 or more years. There were 97% who disclosed their HIV status; 64% told more than 5 people. Negative consequences associated with others knowing they were HIV-positive were reported by 44%, most commonly the loss of friends (24%), being insulted or sworn at (23%), and being rejected by family (21%). There were 10 women (4%) who reported being physically or sexually assaulted as a result of their being HIV positive, and 16% reported having no one they could count on for money or a place to stay. Violence was widespread in this sample, with 62% having experienced physical or sexual violence, including sexual abuse or rape (27%), being beaten up (34%), and weapon-related violence (26%). Logistic regression analysis indicated that women with a history of physical and sexual violence were significantly more likely to experience negative social and physical consequences when their infection became known to others, adjusting for age and the number of people women had disclosed to, both of which were only marginally significant. Partner notification policies and support programs must be responsive to the potential negative consequences associated with others learning that a woman is HIV positive. The high rates of historical violence in the lives of women living with HIV underscore the need for routine screening and intervention for domestic violence in all settings that provide health care to HIV-positive women.     

HIV感染孕产妇配偶相关情况调查

目的 了解HIV感染孕产妇配偶的相关情况,为制订综合预防艾滋病母婴传播策略提供依据.方法 利用专门的调查表对云南省6家妇幼保健机构2005年5月-2006年10月管理的191例HIV感染孕产妇的丈夫进行调查,共收到有效问卷184份.结果 HIV感染孕产妇的丈夫平均年龄29岁,70%以上是初中和小学文化,60%以上是农民,29.2%HIV抗体检测为阴性,60%以上有生育孩子的愿望,HIV感染丈夫的生育欲望强于非感染者,丈夫对艾滋病非传播途径的认识不足.结论 在预防艾滋病母婴传播工作中对HIV感染孕产妇的配偶进行HIV抗体检测和咨询是十分必要的.     

Women and HIV: a time for change

A large number of women who become infected with HIV through heterosexual transmission are married or in committed relationships. An analysis of more than 300 televised public service announcements (PSAs) from 36 countries revealed that women are being denied the information they need to protect themselves from HIV. Half the PSAs analyzed did not include any women, even in country settings where as many women as men were HIV-infected. Moreover, the PSAs featured twice as many male as female authorities, 3 times as many male celebrities, and 10 times as many male narrators. When women were depicted, it was in a care-giving role as wife, mother, or friend of someone with AIDS or as commercial sex workers. By directing PSAs at men, television is reinforcing men's traditional role as the sole sexual decision maker. Both men and women equate condom use with sex with casual partners. PSAs are failing to address women's tendency to believe and trust their regular sexual partners and neglecting the need to teach women how to ask the right questions to assess their personal risk. Recommended are AIDS-related PSAs specifically for women focused on effective partner communication. Educational messages could demonstrate how to use humor to bring up sensitive topics, how to question men directly rather than indirectly about their health, and how to be assertive in ways that enhance rather than threaten relationships. The premise that a woman has the right to take care of herself and to communicate this to others must be conveyed.     

The Profile of HIV Infection in Women

SUMMARY

Human Immunodeficiency Virus (HIV) has become a leading cause of morbidity and mortality among women and children in the United States. As advances are made in the area of diagnosis and treatment of HIV infection, strategies must be developed to support the psychosocial needs of women with HIV disease. The diagnosis of HIV infection in women and their children presents a unique array of complicated social, emotional and medical consequences. Care must be provided in a holistic manner with special emphasis on the needs of women within a systemic context.