Caregiving: A common or uncommon experience?

Howe, Anna L.; Schofield, Hilary; Herrman, Helen

doi:10.1016/s0277-9536(97)00017-8

Cited by 28 publications

(22 citation statements)

References 16 publications

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“…A 1997 Australian population-based study estimated that between 120 and 170 households per thousand provided care and around 50 per thousand provided intense care at any one time. 23 Using the definitions above, they found that 39% of all caregivers were adult offspring caring for elderly parents, 23% were in the same generation (mainly spouses or partners of whom two thirds were >60 years of age), 20% were caring for children (most of these were mothers) and 17% cared for others, including a mix of same and different generations caring for a sibling, parent-in-law, grandparent, grandchild, other relative or a friend. 24 Typically, the main caregiver performed his/her role within a more extensive network of family and friends, most of whom lived in separate households.…”

Section: Discussionmentioning

confidence: 99%

“…24 Typically, the main caregiver performed his/her role within a more extensive network of family and friends, most of whom lived in separate households. 23 A major study in the USA found that almost all terminally ill patients required some kind of assistance that was provided primarily by women (72%); family members provided most of the non-medical care. 25 European trends have more recently signaled rising proportions of paid assistance for the elderly at the end of life, increasing in a recent five-year period from 9.5% to 23%.…”

Section: Discussionmentioning

confidence: 99%

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Defining distinct caregiver subpopulations by intensity of end-of-life care provided

et al. 2008

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Interventions designed to assist informal caregivers who serve individuals at or near the end of life have predominantly focused on caregiving spouses. Can we define other caregiver subpopulations--by intensity of care provided--so as to enable better a) identification of caregiver needs and b) targeting of support to caregivers? The Health Omnibus Survey, an annual face-to-face survey in South Australia, collects health-related data from a representative sample of 4400 households. Piloted questions included in the 2001-2005 Health Omnibus surveys addressed death of a loved one, caregiving provided, impact of caregiving and caregiver characteristics. Of 18,224 respondents, 5302 reported a loved one's death due to terminal illness in the previous 5 years. In all, 502 (10%) provided daily care [5-7 days/week], 619 (12%) provided intermittent care [2-4 days/week] and 425 (8%) provided rare care. Active (daily plus intermittent) caregivers, compared with non-active (rare) caregivers, were more often women (63% vs 50%; P < 0.0001). Daily caregivers were distinguishable from intermittent; daily caregivers were more often widowed (95% vs 7%; P < 0.0001) and >or=60 years (80% vs 64%; P < 0.0001); intermittent caregivers were more commonly children/parents (35%), other relatives (33%), or friends (26%; P < 0.0001) and were better educated, more active in paid work and wealthier. Financial burden, experience at time of death, ability to move on after the death and need for grief support also differed by intensity of caregiving. Caregiver subpopulations can be defined according to intensity of caregiving with distinct demographic features helping to distinguish them.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Defining distinct caregiver subpopulations by intensity of end-of-life care provided

et al. 2008

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“…In this study, we are most interested in looking at caregivers who provide routine care, typically involving very frequent contact with the elderly parent(s) and assistance with both Activities of Daily Living (e.g., bathing, eating, dressing, toileting) and/or Instrumental Activities of Daily Living (e.g., shopping, paying bills, cleaning, errands). Individuals involved in this kind of caregiver role are frequently described as principal or primary caregivers (Howe, Schofield, & Herrman, 1997).…”

Section: Family Caregiving Rolesmentioning

confidence: 99%

Making Sense of Sibling Responsibility for Family Caregiving

et al. 2008

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As the population in the United States and around the globe ages, families are faced with decisions about caregiving for elderly parents. Research suggests that daughters often take on these stressful caregiving responsibilities, with varying levels of help from siblings. In this article, we examine these sibling relationships within the caregiving context, considering the ways in which siblings negotiate the division of tasks for elderly parents and make sense of siblings who provide little help in caregiving activities. Our content analysis of interviews with 25 family caregivers indicated that there was little negotiation of caregiving tasks. Furthermore, family caregivers make sense of sibling participation in caregiving in three ways. First, some caregivers account for caregiving as an individual activity for which they are especially suited. Second, some caregivers see caregiving as stemming from values about family life, but excuse nonparticipant siblings by defining them as outside family boundaries. Finally, caregivers with strong family values who could not make sense of siblings through an exclusionary frame engaged in verbal backtracking during the telling of their stories as a way of making sense of personal caregiving responsibilities.

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“…How these varying stressors are associated with one another is, of course, an important issue for stress research (Pearlin et al, 1997). Moreover, from an applied perspective, this is not a trivial point if we are interested in preserving informal caregivers, who comprise an invaluable resource in the age of debilitating conditions such as AIDS and the progressive dementias and physical deteriorations often associated with Health 3 (4) aging (Turner et al, 1994;Howe et al, 1997). For example, in the present analysis, feelings of entrapment in the caregiving role are particularly salient to health-related worry.…”

Section: Resultsmentioning

confidence: 99%

Health-Related Worry among Informal Aids Caregivers

LeBlanc

Wardlaw

1999

Health (London)

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We examine health-related worries among a sample of informal AIDS caregivers (N = 640), people caring for a friend, loved one or kin outside the formal health care system. Two dimensions of worry are assessed: (1) a generalized sense of vulnerability to sickness; and (2) perceptions of care provision as risky in itself. Many informal AIDS caregivers, whether they are HIV seronegative or seropositive, harbor considerable worry about their own vulnerability to sickness, yet relatively few appear to worry about caregiving as a risky activity per se. We document important variation in the levels and correlates of worry across caregivers as they differ by serostatus and health. We also uncover variation in worry rooted in sociodemographic background and the differential experience of care-related stress. Prevailing theories of risk perception help to illustrate why informal caregivers might differ from other populations in their view of AIDS. Vignettes and quotes culled from marginal comments, which were systematically recorded by trained interviewers during implementation of the survey, supplement the quantitative data.

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Caregiving: A common or uncommon experience?

Cited by 28 publications

References 16 publications

Defining distinct caregiver subpopulations by intensity of end-of-life care provided

Defining distinct caregiver subpopulations by intensity of end-of-life care provided

Making Sense of Sibling Responsibility for Family Caregiving

Health-Related Worry among Informal Aids Caregivers

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