Informal Caregivers of Persons with AIDS

Clipp, Elizabeth C.; Adinolfi, Anthony; Forrest, Lanna J; Bennett, Charles L.

doi:10.1177/082585979501100203

Cited by 20 publications

(13 citation statements)

References 22 publications

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“…Findings revealed that terminally ill patients with diagnoses of heart disease and chronic obstructive pulmonary disease (COPD) had substantially more care needs, a higher level of unmet needs for care, received more paid assistance care, and were more likely to receive hospice or home health care than those with cancer. A final study (Clipp, Adinolfi, Forrest, & Bennett, 1995) compared their findings about AIDS caregivers to another study (Oberst, Thomas, Gass, & Ward, 1989) of cancer caregivers with respect to similar variables of interest. This comparison was possible because the investigators used the same tool to assess caregiving.…”

Section: Literature Reviewmentioning

confidence: 99%

Physical and Psychosocial Health in Family Caregiving: A Comparison of AIDS and Cancer Caregivers

Stetz¹,

Brown²

2004

Public Health Nursing

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The objectives of this study were to compare cancer and AIDS family caregivers in regard to their physical and emotional health. The sample consisted of 26 caregivers of persons with cancer or AIDS. Study participants completed a questionnaire that included measures of depression, grief, symptoms of stress, caregiving demands, interpersonal relationships, health status, and quality of life. The data revealed that both AIDS and cancer caregivers reported high levels of stress and depression as compared to community norms. No significant differences were found between AIDS and cancer caregivers for any of the scale scores; however, the two groups differed on several individual subscales. Cancer caregivers demonstrated higher social functioning and were more likely to report that the work of caregiving itself disrupted their ability to socially engage with others. In contrast, AIDS caregivers were more likely to report that their own health limited their ability to socialize. Even though AIDS caregivers experienced less family support than cancer caregivers, they reported more rewards from caregiving. Results suggest that support delivered to caregivers emphasize a more inclusive approach to program delivery, versus a disease-specific perspective, in order to increase the depth and breath of services provided to families undertaking these challenges.

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Section: Literature Reviewmentioning

confidence: 99%

Physical and Psychosocial Health in Family Caregiving: A Comparison of AIDS and Cancer Caregivers

Stetz¹,

Brown²

2004

Public Health Nursing

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“…Although salutary consequences may result from providing care (Clipp, Adinolfi, Forrest, & Bennett, 1995), many caregivers experience serious physical and mental distress (Lyons, Sayer, Archbold, Hornbrook, & Stewart, 2007; Polen & Green, 2001). Existing literature (Lyons, Zarit, Sayer, & Whitlatch, 2002; Whitlatch, 2008) has pointed to the need to consider variations in care experiences and outcomes both for those receiving care and for their informal caregivers—although most research has focused primarily on the caregiver and has paid limited attention to the person receiving care or to the caregiving relationship.…”

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confidence: 99%

Chronically ill midlife and older lesbians, gay men, and bisexuals and their informal caregivers: The impact of the social context

et al. 2009

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With the exception of HIV care, informal caregiving of chronically ill lesbian, gay, and bisexual (LGB) adults has received very limited attention in the extensive caregiving literature. This article reports on research that considered the social context of care and a dyadic caregiving approach for 36 chronically ill LGB adults ages 50 and older and their informal caregivers. In this study, both discrimination and relationship quality were associated with depression among chronically ill LGB adults and their caregivers. Furthermore, preliminary findings suggested that relationship quality moderates the impact of discrimination as a risk factor for depression in chronically ill LGB adults. The authors discuss the implications of these findings for social policy and future research. Given the changing demographics in the United States with the aging of the baby boomers, as well as an increase in chronic illness, fostering better understanding of caregiving across diverse sexualities and families is critical. Keywordselder; caregiving; depression; social policy; LGB older adultsThe current social and political context in the United States, which includes an ever-growing population of older adults, ongoing discussions about the widespread legalization of samesex marriage and parenting, and differential treatment of lesbian, gay, and bisexual (LGB) adults under the law, combines with longstanding cultural values of individualism and family care of elders to form the backdrop for caregiving in this country. The majority of care for U.S. adults with chronic (long-term) illnesses is provided not in nursing homes or other formal care organizations, but informally at no public cost (Stone, 2000). Families and friends provide 70% to 80% of the informal in-home care for adults with chronic illnesses. An estimated 21% of the U.S. population provides unpaid care to family and friends age 18 or older, which translates into more than 44 million informal caregivers (National Alliance for Family Caregiving & AARP, 2004).Chronic illness can occur at any age, but the incidence of chronic conditions increases in midlife and continues into old age (Barker, Herdt, & DeVries, 2006;Verbrugge, 1989 Chronic illness refers to long-term diseases that have no known cure and are progressive in nature (Royer, 1998). As the population ages, the proportion of people living with chronic illnesses will also increase. By the year 2030, nearly 30% of adults will require assistance and about 20% will have severe limitations with high needs, placing increased demands on informal caregivers (Stone, 2000 (1995) has estimated that about 5 million adults ages 18-64, the majority of whom live in the community, require assistance with day-to-day activities.Informal caregiving is defined as unpaid assistance, provided primarily by family members and friends, that helps ill and disabled adults remain in the community (Fredriksen-Goldsen, 2007a). Policy changes have placed increased responsibility on informal caregivers to provide ongoing assistance ...

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“…The depletion of vital energy in professionals who work with AIDS individuals is mentioned in several works world-wide (e.g., Bennet, Michie, & Kippays, 1991;Bolle, 1988;Figueiredo & Turato, 1995). Family members have been less investigated, but they also show several health problems (Brown, 1994;Clipp et al, 1995;Leblanc, London, & Aneshensal, 1997).…”

Section: Burnoutmentioning

confidence: 97%

“…Caregivers have to perform daily routine actions with the patient (Clipp, Adinolf, Forrest, & Bennet, 1995), drastically altering their own lives. A caregiver faces several crisis situations that can endanger the establishe d treatment to the patient.…”

mentioning

confidence: 99%

Needs for Assistance and Emotional Aspects of Caregiving Reported by Aids Patient Caregivers in a Day-Care Unit in Brazil

Figueiredo¹,

Er²

2001

Issues in Mental Health Nursing

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The advent of AIDS in families, following the chronic evolution of the illness, has produced crisis situations unknown until now. With the objective of knowing this new reality better, 20 caregivers of AIDS patients were interviewed in southeastern Brazil. The collected data were analyzed using a qualitative method. The results showed dif culties regarding caregiving, such as a lack of orientation, materials, transport, and people to share the role of caregiver, as well as emotional dif culties, such as fears from infection, revulsion, pity, and impotence in the face of death. The role of families is essential in patient assistance, due to the inability of the health system to attend to all AIDS patients. Nevertheless, these families have to receive support mainly from nurses, in order to be helped in executing an aid plan to the ill person at home. Nurses and health care

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Informal Caregivers of Persons with AIDS

Cited by 20 publications

References 22 publications

Physical and Psychosocial Health in Family Caregiving: A Comparison of AIDS and Cancer Caregivers

Physical and Psychosocial Health in Family Caregiving: A Comparison of AIDS and Cancer Caregivers

Chronically ill midlife and older lesbians, gay men, and bisexuals and their informal caregivers: The impact of the social context

Needs for Assistance and Emotional Aspects of Caregiving Reported by Aids Patient Caregivers in a Day-Care Unit in Brazil

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