Sustaining the relationship: women's caregiving in the context of HIV disease

In North America and throughout the world the number of persons living with human immunodeficiency virus (HIV [PLWH]) continues to increase. Before the recent discoveries of effective antiviral treatments that have given hope to families of PLWH, acquired immune deficiency syndrome (AIDS) was looked upon as a disease that was a virtual death sentence to those who were infected. The symptoms and opportunistic infections associated with AIDS are varied and debilitating, and PLWH require intensive and prolonged care during their many illnesses and rigorous treatments. As medical breakthroughs have prolonged the lives of the infected persons, the complicated regimens of the treatments and the physical effects of both treatment and disease continue to require the support and caregiving of family members. As is so often the case with caregiving, the tasks of caring for the men, women, and children with AIDS have been taken on in many cases by the women in their lives: their mothers, sisters, aunts, and other family members. In this study I used the grounded theory method to generate a substantive theory of women's caregiving in the context of AIDS. The primary process for collection of data in this study was interviewing participants. In-depth interviews were conducted with 9 women who ranged in age from 28 to 65. Three of the women had AIDS and were also caregivers, 3 other caregiving women were sisters, and 3 were mothers of PLWH. Five of the informants were White and 4 were African American. The basic social psychological process (BSPP) that emerged from the analysis of the data was sustaining the relationship. In this study, role transition, managing behavior, reciprocal caring, balancing independence, and managing distance were categories of the BSPP, "sustaining the relationship" as women engaged in the intricate processes of caregiving. These were overlapping and interacting processes that women used to nurture and preserve not only the object of their care, the person with HIV, but also that person's relationships with her or his significant others, including the relationship with the caregiver. In this article, relationships between categories are illustrated with quotations from the data. Implications for future research and for clinical practice are discussed.     

'I felt I have grown up as an adult': caregiving experience of children affected by HIV/AIDS in China

Background The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well‐being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China. Methods The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In‐depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS. Results Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class). Conclusion While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community‐based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.     

Care and secrecy: Being a mother of children living with HIV in Burkina Faso

Home care has become a central component of the response to the HIV/AIDS epidemic, displacing caregiving work onto women. While increasing interest has been paid to HIV/AIDS care with a focus on ailing adults and orphan foster care, the issue of caring for children living with HIV has received little attention in the social sciences. Based on ethnographic material gathered in Burkina Faso between November 2005 and December 2006, the aim of this paper was to gain understanding of women who mother and care for children living with HIV in resource-limited countries. The study involved participant observation in community-based organizations in Burkina Faso and semi-structured interviews with 20 women mothering HIV-positive children as well as 15 children infected with HIV, aged between 8 and 18 years. In daily care mothers face many great challenges, ranging from the routine of pill-taking to disturbing discussions with children asking questions about their health or treatment. The results also show how HIV/AIDS-related stigma adds an additional layer to the burden of care, compelling mothers to deal with the tension between secrecy surrounding the disease and the openness required in providing care and receiving social support. As mothers live in fear of disclosure, they have to develop concealment strategies around children's treatment and the nature of the disease. Conversely, some mothers may share their secret with kin members, close relatives or their children to gain social support. As HIV/AIDS care is shaped by secrecy, these findings shed light on mothers' isolation in child care within a context of changing patterns of family bonds and lack of formal psychosocial support addressing child-related issues. Finally, women's engagement in child care invites us to look beyond the essentialist approach of women's vulnerability conveyed by international discourse to characterise the situation of women facing the HIV/AIDS impact.     

Occupational segregation,gender essentialism and male primacy as major barriers to equity in HIV/AIDS caregiving: Findings from Lesotho

Background  

Gender segregation of occupations, which typically assigns caring/nurturing jobs to women and technical/managerial jobs to men, has been recognized as a major source of inequality worldwide with implications for the development of robust health workforces. In sub-Saharan Africa, gender inequalities are particularly acute in HIV/AIDS caregiving (90% of which is provided in the home), where women and girls make up the informal (and mostly unpaid) workforce. Men's and boy's entry into HIV/AIDS caregiving in greater numbers would both increase the equity and sustainability of national and community-level HIV/AIDS caregiving and mitigate health workforce shortages, but notions of gender essentialism and male primacy make this far from inevitable.     

The meaning of complementary and alternative medicine practices among people with HIV in the United States: strategies for managing everyday life

The meanings of complementary and alternative medicine (CAM) practices in the everyday lives of people with HIV in the United States were investigated. Interviews of people with HIV revealed that two out of three interviewees (N = 62) used some form of CAM over the course of their ongoing HIV infection. Management of their everyday lives as ill persons was improved to the extent that CAM meanings addressed self-regulation of treatment practices and strategies to cope with uncertainty. Four main strategies are dealt with: managing symptoms, medications and emotions; self experimenting to evaluate disease progression; gaining freedom from medical regimens; and managing AIDS stigma. It was shown that CAM practices are one way people with HIV can increase control over their illness and attempt to normalise health status. CAM practices were discussed in the context of self-regulation in relation to other illnesses.     

中山市HIV感染者流行病学分析和随访调查

目的　通过对中山市艾滋病病毒 (HIV)感染者的分析和随访 ,了解其HIV的传播途径、高危行为和生存现状 ,为干预HIV传播提供依椐。方法　于 1992～ 2 0 0 3年每年对中山市新发现的HIV感染者建立档案 ,制订个人健康咨询随访表 ,2 0 0 0年起每年进行一次咨询随访 ,了解其健康状况、去向及家属感染状况。结果　共新发现HIV感染者 72 5例 (其中艾滋病患者 12例 ) ,感染途经以静脉吸毒为主 ,占 89 93% ,有偿献血、单采浆及受血感染占 2 6 2 % ,性接触感染占 6 90 %。咨询随访前后吸毒者共用针具率分别为 98 4 7% (6 4 2 / 6 5 2 )、5 6 2 5 % (171/ 30 4 ) ,差异有显著性 (P <0 0 1) ,咨询随访三年后仅 2人坚持戒毒。咨询随访前非婚性行为发生率为 2 4 0 0 % (15 8/ 6 5 8) ,15 8例有非婚性行为者咨询随访前后从不使用安全套分别占 80 38%、4 5 5 7% ,差异有显著性 (P <0 0 1)。 1999～ 2 0 0 3年随访者共发生相关疾病死亡 96例 (其中新发现及发展为艾滋病患者死亡 2 2例 ) ,入院治疗仅 6 1人次。结论　中山市HIV感染途经以静脉吸毒为主 ,并存在性传播的危险 ,感染者生活质量低。应加强HIV感染者健康教育 ,减少二代感染 ,并帮助感染者进行抗病毒治疗 ,提高HIV感染者生活质量。     

More than mothers and whores: redefining the AIDS prevention needs of women

Women are increasingly at risk for AIDS. At the root of this risk is women's relative lack of control over their bodies and their lives. Those women with least control, generally poor women of color, are at greatest risk in both developed and developing countries. To date, AIDS prevention programs have ignored most women, focusing almost exclusively on women in the sex industry and, more recently, prenatal women. We urgently need prevention programs for women that view women as more than "mothers and whores" and recognize that AIDS poses a real risk to many of us; programs that are sensitive to the complex realities of women's lives and offer realistic alternatives that will allow women to protect themselves from HIV infection.     

Visually storying living with HIV: bridging stressors and supports in accessing care

This paper examines how visual narratives may bridge relational understandings between people living with HIV/AIDS (PLWH/A) and future oral health care providers. Borrowing from literature in participatory visual methods such as photo elicitation and photovoice, we explored how PLWH/A visually choose to represent their daily lives. This study uses a grounded theory action-oriented approach in examining the thematic analysis of 257 photos and 12 related reflective participant journals. Ten collaborative themes emerged from the participants' analysis of their photos. These themes of social support, places, family, staff, group, recovery tools, transportation, friends, medications and food exhibited the indivisible characteristics of stressors and supports commonly found in accessing care. Further researcher reflections also found three meta-themes of stigmatization, maintenance of positive mental health and the development of pride in managing one's health. PLWH/A need to share these visual themes of supports and stressors with future dental providers so that they may hopefully acquire an understanding of chronic illness that is more personalized and relationship centered rather than merely numeric and detached.     

The search for meaning in HIV and AIDS: the carers' experience

This article explores informal carers' experiences in caregiving for people living with HIV and AIDS. The search for meaning encompasses the ways in which carers find meaning in caregiving. A grounded theory approach was taken. Data were collected by means of 43 in-depth interviews and participant observation. Caregivers felt that it was important to have control over the emphasis that HIV had within their lives and developed an attitude that put the virus in perspective. Getting involved in HIV and AIDS work outside of the immediate caregiving relationship was evident. The motivation for this was in part a reaction to prevailing societal views on HIV and in part altruistic in that it provided further meaning for the caregiving experience. This study suggests that finding meaning in caregiving is a powerful way to achieve a balance between the costs of caregiving and personal reward.     

"I have lost sexual interest …"-challenges of balancing personal and professional lives among nurses caring for people living with HIV and AIDS in Limpopo, South Africa

As part of a capacity-building research project, this study examined the extent to which caring for people living with HIV and AIDS (PLWHA) affects both professional and personal relationships of nurse caregivers. The data were collected using focus group interviews with 17 female nurses at two Limpopo hospitals. The PEN-3 cultural model was used as a theoretical framework for exploring how nurses balance job demands with family responsibilities. The results generated three themes: the multiple identities nurses experience within their family and professional lives; nurse attitudes related to patient gender; and stigma experienced by nurses who care for PLWHA. Caring for PLWHA influences nurses' personal and professional lives by interfering with their perceptions and emotions as they relate to spousal, parental, and gendered relationships. The findings offer insight into factors requiring consideration when designing interventions to help nurses cope with the stress associated with caring for PLWHA while simultaneously managing family responsibilities.     

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.     

Family Caregivers in Rural Uganda: The Hidden Reality

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls.

This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.     

Examining HIV/AIDS-Related Stigma at Play: Power,Structure, and Implications for HIV Interventions

ABSTRACT

Drawing on critical theoretical perspectives and ethnographic field research related to HIV/AIDS in northern India, this paper argues for a cultured-centered approach to stigma reduction interventions and communication practices that are based on an assessment of larger social and structural processes on the one hand and the lived experiences and narratives of people living with HIV (PLWH) on the other. This paper suggests that while the complex nature of stigma, particularly as it relates to HIV/AIDS, makes it difficult to understand and respond to, this problem is further exacerbated by a largely individual and behavior-centered research that still dominates the field of Health Communication. Such research sees human cognition as the main source of stigma and underplays issues of power, structure, domination, and control. More specifically, and with concrete examples from the everyday lived experiences of PLWH – such as their experiences within family and health-care settings, this paper demonstrates how power and structure deeply impact their lives and remain central to their experience of (and resistance to) stigma, thus opening up space for alternative theorizing and practices in Health Communication.     

Family caregivers in rural Uganda: the hidden reality

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.     

THE IMPACT OF HIV/AIDS ON BAHAMIAN WOMEN: A FEMINIST PERSPECTIVE

The purpose of this article is to describe the impact of HIV/AIDS on Bahamian women and to recommend strategies nurses should implement to enhance the quality of life for these women. Using an eclectic feminist approach, I conducted a literature review and personal exploration of HIV/AIDS care and support related to women as caregivers, carereceivers, childrearers, and childbearers. Women’s oppression in a patriarchal society and HIV/AIDS-associated stigmas have resulted in their decreased quality of life and shortened life span. Nurses need to empower Bahamian women and assist with dismantling the social order in The Bahamas, which promotes women’s inequality so that women infected with HIV/AIDS can live longer and better lives.     

Politics and personal pursuits: the experience of mothers of children with severe disabilities

This study concerns the political nature of the work of mothers of children with disabilities who extended their caregiving responsibilities to social action in the public domain. Conversations were held with twenty-one women to determine, from the women's personal points of view, the meaning of their politically oriented work. The women who participated in the study were actively engaged in developing educational programs, initiating parent support groups, educating professionals in health, education, and social services and serving on various committees and boards of directors. The research adopted a feminist frame of reference to understand the women's experience of political activism. As such, the research recognized the integrative aspects of women's lives: commonplace and routine tasks of caregiving took on political aspects as the women sought assistance and services for their children with disabilities and their families. Their work often occurred spontaneously and without prior planning due to the urgency of their family's personal needs. In fact, many of the women did not consider their work political at all for it simply coincided with the job of caring for their children. The women's achievements could be attributed in part to the intensity of their personal missions and their remarkable abilities to persuade influential officials and administrators.     

Experiences of pregnant and post-partum women with HIV

Detect the experiences of pregnants and mothers that bear the HIV viruses using quimioprophylaxlis to prevent the upright transmission. A research of qualitative approach developed between march and april of 2006 on main mother-hoods in Fortaleza - Ceará. The persons were pregnants and mothers with positive HIV in the accompaniment and in the accommodations. The colect of informations happened with interviews appointments and analisys in three categories: the revelations of diagnosis to relatives, the advice and how live these persons with the advices to profilaxy of the upright transmission. We can see these women fought against conflicts and negative fellings in their lives and a individualize accompaniment by a capacitate team minimizes the emotional side of the patients.     

VULNERABLE ADOLESCENT MOTHERS’ PERCEPTIONS OF MATERNAL ROLE AND HIV RISK

Pregnant adolescents and young mothers living in Los Angeles County are vulnerable to acquiring HIV/AIDS through sexual transmission because they lack the resources, social status, and power to protect themselves. In this article we describe adolescent mothers’ (n = 76) responses to an HIV prevention program. The design of the study was based in ethnography, the anthropological tradition of qualitative research. Many of the pregnant teens and young mothers described how the experience of becoming a mother helped empower them to improve their lives. Yet efforts to decrease risky sexual behavior were overshadowed by more immediate concerns and by relationship issues of gender and power and of trust.     

HIV/AIDS stigma-associated attitudes in a rural Ethiopian community: characteristics, correlation with HIV knowledge and other factors, and implications for community intervention

ABSTRACT: BACKGROUND: Whether scale-up of HIV prevention and care will reduce negative attitudes and discriminatory practices towards persons living with HIV/AIDS (PLWH) is uncertain. An HIV knowledge and attitude survey was conducted in a rural Ethiopian community where HIV prevention and treatment was being rapidly scaled up. Data were analyzed to identify prevalence of and factors associated with stigma-associated attitudes towards PLWH. METHODS: We surveyed 561 adults from 250 randomly selected households in the rural town of Arba Minch and surrounding villages about positive or negative attitudes towards PLWH, as well as demographic characteristics, and knowledge about HIV transmission and treatment. RESULTS: Eighty percent of respondents agreed with [greater than or equal to] 1 negative statements indicating blame or shame towards PLWH and 41% agreed with [greater than or equal to] 1 negative statements associated with distancing themselves from PLWH. However, only 14% expressed negative responses about whether PLWH should receive support from their communities. In multivariate analysis, a greater number of negative attitudes towards PLWH was significantly (p < 0.05) associated with: female gender (Odds Ratio [OR] = 1.51), living in a rural village (vs. town neighborhood) (OR = 3.44), not knowing PLWH can appear healthy (OR = 1.78), lack of knowledge about perinatal transmission (OR = 1.49), lack of knowledge about how HIV is not transmitted (e.g. casual contact) (OR = 2.05), lack of knowledge about HIV treatment (OR = 1.80), and not personally knowing a PLWH (OR = 1.41). CONCLUSIONS: In a rural Ethiopian setting in which rapid scale-up of HIV treatment occurred, many respondents still characterized HIV as associated with shame or blame, or indicated PLWH would be isolated or discriminated against. HIV stigma can hamper both prevention and treatment programs. We identified multiple issues which, if addressed, can help promote a more positive cycle in which PLWH are appreciated as members of one's own community who are affirmatively interacted with and supported. Stigma reduction programs should address knowledge gaps such as fears of casual contact contagion, and lack of awareness of medical interventions to help prevent HIV disease, as well as building upon community-based attitudes of the importance of supporting and showing compassion for PLWH.