Gay Bars and Serendipity

Abstract

HIV/AIDS continues to be a serious public health issue. As HIV changes from an acute disease to a more chronic illness, it places increased responsibility on family caregivers to provide on-going assistance. Based on a conceptual model of caregiving resilience, this study found high variation in caregiving outcomes with many caregivers demonstrating high levels of well-being despite adverse life circumstances. Factors that contributed significantly to caregiver well-being included income, caregiver health, discrimination, multiple loss, dispositional optimism and self-empowerment. These findings suggest that HIV/AIDS and caregiving entail more than stress and distress and that future research needs to consider caregiving within the context of a historically disadvantaged community, resilience of informal caregivers, and risk and protective factors at the personal, cultural and community levels. Such information is necessary to design community-based interventions to support informal caregivers and persons living with HIV/AIDS.     

Listening to Older Adult Parents of Adult Children With Mental Illness

This article uses qualitative research and narrative analysis to examine the experience of women age 55 and older who are parents caring for adult children with mental illness. Knowledge about the conflicts of older parents with dependent children is underdeveloped. In this study, analysis of women's stories about parenting in later life reveal that the women have two sets of feelings: wanting to be free from the responsibility of caregiving and feeling responsible to continue the support and protection of their adult vulnerable children. The women's conflicts are palpable and are found in the ideational themes of the narratives, as well as the structure of how the narratives are spoken. The discussion highlights the relevance of the theory of ambivalence for clinical practice when working with older women who are caregivers for their adult dependent children.     

Constructing an alternative family unit: families living with HIV/AIDS redefine African traditional parenting patterns

This article is based on a study, conducted at Inanda, of caregivers who mainly take care of children that are infected and/or affected by HIV/AIDS. ¹ 1. The discussion of this article emanates from a three‐year‐long study that focused on the after‐effects of HIV/AIDS. Six participants from 15 in‐depth interviews are used for the focus of the article. Based on recurring similar characteristics, the other nine participants were excluded. All the participants of the study were Zulu speakers, one of the main languages of the country. I use fictitious names to conceal their identities. It explores the reality and experiences of the family members. The focus of the article is based on data analysed following interviews with the caregivers. Family parenting experience portrays HIV/AIDS caregiving as an intense, emotional and powerful experience, filled with pride and hope as well as exclusion. Findings of the study reflect a change in the definition and practice of parenting. Another finding is that HIV/AIDS is forcing a redefinition of the concept and practice of parenting beyond the traditional boundaries of age, sex and gender. One of the main findings of the study was that the respondents' parenting practices and coping strategies are largely influenced by a strong commitment to the wellbeing of the children. The study found that, in relation to some community members, the respondents have a different parenting style. Their commitment depicts their self‐sacrifice, an indication of some continuity in what is expected of African parenting practice. The thesis of this article is that the HIV/AIDS context is principally responsible for a shift in the understanding of the concept and practice of parenting within an African context.     

Family Caregiver Communication in the ICU: Toward a Relational View of Health Literacy

We interviewed 18 family caregivers about their communication experiences in the ICUs at an urban hospital. Analysis of their narratives suggests health literacy is important in family caregiver/healthcare provider communication, especially as complicated illnesses move the caregiver deeper into decision making. Using the domains of Yuen et al.’s conceptual model of caregiver health literacy (2015), we identified three themes within the context of ICU communication: agency, coordinated communication, and caregiver’s evolving role. We saw family caregivers negotiating domains of health literacy as they built upon knowledge of the patient’s needs, their rights as family caregivers, and the hierarchy of the professional staff. We found that these narratives represent co-created, or relational communication, rather than individual health literacy skills. Conceptualized in the transaction of relationship, health literacy is enacted; it is socially constructed and is the scaffolding upon which family caregivers make decisions, care for their loved one, and care for themselves.     

CHILD CARE AND POVERTY IN SOUTH AFRICA

This article draws on ethnographic research with children and their caregivers to explore the interaction between poverty and the nature and quality of child care in a resource-poor urban community in South Africa. The authors attend to issues such as mobility and “family fragmentation,” the role of the extended family and other networks, and children's contributions to their own and others’ care, all matters that provoke particular concern in the context of HIV/AIDS. The research challenges some of the more conventional interpretations on these matters by pointing to the continuities children experience in what can appear a disrupted care setting as well as the positive aspects of children's involvement in care. It also supports the case for a closer look at men's participation in various child-care roles in a climate where they are often dismissed as absent or unemployed and therefore non-contributory. Future research and policy on child care would benefit from the conceptual approach adopted across this work, which employs a relational lens and encompasses the dynamic contexts in which care is experienced and performed.     

Religious and Spiritual Dimensions of the Vietnamese Dementia Caregiving Experience

This paper focuses on the role of religion and spirituality in dementia caregiving among Vietnamese refugee families. In-depth qualitative interviews were conducted with nine Vietnamese caregivers of persons with dementia, then tape-recorded, transcribed, and analyzed for emergent themes. Caregivers related their spirituality/religion to three aspects of caregiving: (1) their own suffering, (2) their motivations for providing care, and (3) their understanding of the nature of the illness. Key terms or idioms were used to articulate spiritual/religious dimensions of the caregivers' experience, which included sacrifice, compassion, karma, blessings, grace and peace of mind. In their narratives, the caregivers often combined multiple strands of different religions and/or spiritualities: Animism, Buddhism, Taoism, Confucianism and Catholicism. Case studies are presented to illustrate the relationship between religion/spirituality and the domains of caregiving. These findings have relevance for psychotherapeutic interventions with ethnically diverse populations.     

Shared responsibility and network collaboration in caregiving

Communal coping may benefit caregivers, but most communal coping research focuses on dyads. Using an egocentric network design, we examine caregivers’ we-talk—a linguistic marker of shared responsibility—and caregiver reports of 1) network member involvement in collaborative care roles and 2) met/unmet expectations across typically developing and rare disease contexts. We-talk was linked to involvement in direct care and support, but links of we-talk to decision-making varied based on network member closeness; we-talk was linked to meeting expectations for decision-making only. There were no differences across context, suggesting shared responsibility is linked to collaborative roles across caregiving contexts.     

Ethnic Variations in Dementia Caregiving Experiences

Abstract

The proportion of minority elders with dementia in the United States is projected to rise substantially. This study elicited perceptions of the caregiving experience from informal caregivers of persons with dementia, across different ethnicities. Six focus groups with 47 dementia caregivers of African-American, Chinese-American, Euro-American, and Hispanic-American ethnicities were conducted. Caregiving roles, concern about the person with dementia, and unmet information and resource needs were expressed similarly. However, perspectives differed across ethnic groups on stigma surrounding dementia, benefits of caregiving, spirituality/religion to ease caregiving burden, and language barriers and discrimination. Findings suggest that interventions to reduce disparities in dementia care quality need to address ethnic variations in caregiving experiences.     

When caregivers are in need of care: African-American caregivers' preferences for their own later life care

To “care for one's own” is a cultural expectation within a larger ethic of care in the African-American community. Applied to caregiving of aging elders, this ethic of care emphasizes the importance of providing in-home family care rather than opting for out-of-home placement. This study explores why a subset of African-American caregivers prefer or are open to out-of-home placement over in-home family care if they are no longer able to care for themselves. In-depth interviews with 24 family caregivers are analyzed. Three themes emerged including the desire to “spare our children” the burden associated with caregiving, viewing the next generation of potential caregivers as unequipped for the task, and having no one left to provide care for them.     

Caregiving transitions: Developmental and gendered perspectives

Providing care for family members is a life event that both reflects and influences family dynamics. Caregiving careers, or the length of time a person provides care, are characterized by a series of transitions to which they must continuously adapt. Women are more likely than men to assume the caregiver role and this role encompasses gender inequalities associated with work and caregiving expectations. This article presents qualitative data from interviews conducted with caregivers who participated in a community-based supportive services program. The experiences of these women provide insight into how caregivers transition into their role, strategies for supporting new and experienced caregivers, and their concerns for their future. Developmental and gendered perspectives of caregiving were used as a context to analyze their experiences.     

In sickness and in health: A qualitative study of elderly men who care for wives with dementia

It is estimated that approximately 1,000,000 elderly men care for spouses with Alzheimer's disease or other forms of cognitive impairment, yet we have only a limited understanding of their work, and central questions arise. What do men caregivers do, and what meanings do they ascribe to their work? What are their distinctive strengths and vulnerabilities, and what can we learn about men and caregiving from their stories? This qualitative study was based on in-depth, open-ended interviews with 14 elderly men who are primary caregivers to wives with dementia. All interviews were taped, transcribed, and manually coded. The resulting information then underwent analysis from which three major themes emerged: feelings of isolation and invisibility of their care work, a style of caregiving that jointly utilizes management and nurturing, and feelings of commitment, responsibility, and devotion.     

HIV/AIDS Projects with and for Gay Men in Northern Thailand

Abstract

In this paper I look at three HIV/AIDS projects which were run by and for gay men, transsexuals and men who have sex with men (MSM) in northern Thailand in the early 1990s. These three projects were very different in format and in context, ranging from a rural village AIDS association to an urban drag beauty contest. The projects were located in settings as different as gay bars and cruising areas, shopping malls and rural villages. Aspects of the three Thai projects have important implications for those working in HIV/AIDS prevention and in the care and support of people living with HIV/AIDS (PLWHAs) across cultures, particularly in relation to education, outreach and counselling programs.     

Anatomy of Fear: Mead's Theory of the Past and the Experience of the HIV/AIDS “Worried Well”

The HIV/AIDS “worried well”—persons who believe themselves infected with HIV in the absence of any objective medical proof—have been well documented in the psychological literature but not the sociological literature. Adopting a symbolic interactionist perspective, I use George Herbert Mead's theory of the past to conceptualize the HIV/AIDS worried well experience by analyzing narratives written by persons who have been worried well. Empirically, I provide sociological evidence of the existence of the HIV/AIDS worried well. Theoretically, I expand concepts derived from studies of persons with chronic illness to the worried well and speak to the influence of Mead's theory of the past to sociology.     

Identity Transformation and Family Caregiving: Narratives of African American Teen Mothers

This article explores connections between informal caregiving and identity transformation as experienced by pregnant teens. Based on in‐depth interviews with 51 African American teen mothers, the article examines teens’ pregnancy narratives as an example of narrative repair, illuminating how attending to processes that connect one’s identity to the care of others can work to empower individuals to resist threats to a positive sense of self or a damaged identity. The authors suggest that family caregiving can provide an important context that supports identity transformation not only among pregnant teens as they strive to become good mothers but among those experiencing other types of disruptions to their lives.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Understanding caregiving patterns, motivations, and resource needs of subsidized family, friend, and neighbor child care providers

Family, friend, and neighbor (FFN) caregivers play important roles in delivering subsidized noncustodial child care. Yet, little is known about these noncustodial caregivers. This article profiles the caregiving experiences, motivations, and resource needs of these providers, based on a survey of 301 randomly selected FFN providers in one state. Kecommendations are offered for strengthening public supports to enhance the quality of this form of caregiving.     

Defining the challenges of providing long-term care: the case of the nursing home industry's response to the AIDS epidemic

Acquired Immune Deficiency Syndrome (AIDS) is now viewed as a chronic disease requiring long-term management. As a result, more persons with AIDS (PWAs) are seeking long-term care in facilities that have primarily served the elderly. In some regions, however, the nursing home market into which PWAs may introduce new demand is a market already characterized by excess demand. In light of this, competition for limited long-term care resources may develop between the frail elderly and PWAs. The nursing home industry has raised many issues regarding the feasibility of admitting AIDS patients as residents, but little is known about how important these issues are in deciding admissions policy. How the industry perceives and resolves the concerns it has regarding delivery of care to PWAs can affect the overall long-term care system and thus affect the traditional users-the frail elderly. Knowing the concerns and preferences of the industry may help guide and anticipate future changes in the system. In this pilot study, a random sample of 250 nursing home administrators in the five highest AIDS-incidence areas in the United States was surveyed to determine (1) the industry's concerns and issues regarding AIDS care, (2) data regarding requests for admission by PWAs to nursing homes, and (3) data concerning the industry's preferred way of delivering AIDS care. Important admissions policy issues cited by the respondents included the ability to meet special care needs, costs of care, and inadequate reimbursement. The majority also believed the most appropriate methods of providing care were special care units for AIDS within nursing homes or dedicated HIV/AIDS nursing facilities.     

Reciprocities in caregiving relationships in Danish elder care

This article examines the nature of the reciprocal relationships between elderly people and both their informal caregivers and home helpers in Denmark. One of the key results concerns the importance that elderly care recipients attached to various forms of reciprocity. The two major ones were hospitality and gift giving. While informal caregivers see their caregiving as normative or as generalized reciprocity, many stressed that the elderly person's personality and their expressions of gratitude and appreciation (symbolic reciprocity) were important factors facilitating caregiving. Home helpers spoke of satisfaction in helping others, but also underlined the fact that they could see some good role models for their own old age. The results are analyzed on the backdrop of the nature of the Danish welfare system, which provided liberal pensions and benefits. This indirect reciprocity enabled elderly people to retain their ability to participate in reciprocal social relations and preserve their integrity and independence.     

Aging in Timorese Exile: (Im)mobilities of Care and Intergenerational Relationships

ABSTRACT

This paper discusses transnational care and border regimes in the context of the East Timorese exile in rural Indonesia. Drawing from multi-sited ethnographic research, it explores the ways older people cope with family separation and life in exile, their aspirations, when and how transnational care becomes “on hold”, and how they deal with the impossibility of meeting intergenerational and cultural obligations. Analyzing care using the lens of “circulation”, the paper attends to the asymmetries entailed in intergenerational relationships as well as to how uneven power relations of border regimes shape transnational care exchanges. In the context of “aging in exile”, the paper underlines the importance of understanding older persons’ narratives as they are linked with the ambivalences of other family members across generations. The paper argues that the forms of immobility withholding or limiting caregiving can transcend physical boundaries. They can include the social and emotional borders conflict-divided communities build against one another over time. These “imaginary” borders require us to think about the additional asymmetries entailed in precarious familial relations and how this affects the multiple meanings of care in the context of contemporary border regimes and amid enduring legacies of violence.     

Informal caregiving for elders in Sweden: an analysis of current policy developments

In Sweden, care of elderly people is a public responsibility. There are comprehensive public policies and programs providing health care, social services, pensions, and other forms of social insurance. Even so, families are still the major providers of care for older people. In the 1990s, the family was "rediscovered" regarding eldercare in Sweden. New policies and legislative changes were promoted to support family caregivers. The development of services and support for caregivers at the municipal level has been stimulated through the use of national grants. As a result, family caregivers have received more recognition and are now more visible. However, the "Swedish model" of publicly financed services and universal care has difficulty addressing caregivers. Reductions in institutional care and cutbacks in public services have had negative repercussions for caregivers and may explain why research shows that family caregiving is expanding. At the same time, a growing "caregivers movement" is lobbying local and national governments to provide more easily accessible, flexible, and tailored support. In 2009, the Swedish Parliament passed a new law that states: "Municipalities are obliged to offer support to persons caring for people with chronic illnesses, elderly people, or people with functional disabilities." The question is whether the new legislation represents a paradigm shift from a welfare system focused on the individual to a more family-oriented system. If so, what are the driving forces, motives, and consequences of this development for the different stakeholders? This will be the starting point for a policy analysis of current developments in family caregiving of elderly people in Sweden.