Toward the Conceptualization and Measurement of Caregiver Burden Among Pueblo Indian Family Caregivers

John, Robert; Hennessy, Catherine Hagan; Dyeson, Timothy B.; Garrett, Mario

doi:10.1093/geront/41.2.210

Cited by 36 publications

(42 citation statements)

References 34 publications

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“…Our association of caregiving with low stress and great personal meaning closely corresponds to the results of other studies with caregivers from minority populations [10–12], including AI/ANs [17–20]. Non-white caregivers typically find the caregiving experience to be positive.…”

Section: Discussionsupporting

confidence: 87%

“…For caregivers of oncology patients, such adverse mental and physical health outcomes are well-documented [16]. Few studies, however, have examined the caregiving experience in AI/AN communities [17–20]. Like other non-white populations, AI/ANs tend to regard their caregiving activities as highly meaningful and personally satisfying, and they report manageable levels of stress [19].…”

Section: Introductionmentioning

confidence: 99%

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Caregiving among American Indians and Alaska Natives with cancer

Sawchuk

Dyke

Omidpanah

et al. 2014

Support Care Cancer

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Purpose Caregivers are an important source of support for oncology patients during cancer diagnosis and treatment, often helping patients manage barriers to care. Our study had three goals: to describe the characteristics of caregivers for American Indian and Alaska Native (AI/AN) oncology patients; to assess the similarities and differences between the perceptions of caregivers and patients regarding barriers to cancer care; and to compare AI/AN caregivers to non-AI/AN caregivers on perceived barriers to cancer care. Methods We conducted a structured interview that assessed perceived barriers to cancer care with a paired sample of 98 adult caregivers and 98 AI/AN oncology patients and to assess the degree of agreement between these two groups. We also investigated whether AI/AN and non-AI/AN caregivers had differing perceptions of barriers to cancer care. Results Caregivers reported that their role was very meaningful and not highly stressful. Caregivers and patients agreed 70% of the time on specific barriers to cancer care. Both groups overwhelmingly reported financial and family or work issues as major barriers to care, whereas trust in providers was the least frequently endorsed barrier. A comparison of AI/AN and non-AI/AN caregivers revealed that AI/AN caregivers identified confidentiality among clinical staff as a significant barrier, whereas non-AI/AN caregivers perceived financial barriers as more significant. Conclusions Finances, family, and work are perceived as the largest barriers to the receipt of cancer care for AI/AN oncology patients. Both patients and caregivers trusted health care providers. Assessing barriers to care early in the assessment process may result in better engagement with cancer treatment by patients and their caregivers.

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Section: Discussionsupporting

confidence: 87%

Section: Introductionmentioning

confidence: 99%

Caregiving among American Indians and Alaska Natives with cancer

Sawchuk

Dyke

Omidpanah

et al. 2014

Support Care Cancer

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“…In addition, using home respite services to deliver long-term care has the following relevant benefits: it is a care resource available in all developed countries; it is a suitable formula for addressing the problem of delivering long-term care to dependent people (Council of Europe, 1998); its use entails a reduction in care costs (Garcés, 2000); and home-based care is preferred by dependent people and delays and prevents institutionalization, while promoting wellbeing, longevity and quality of life (Havens, 1999;John et al, 2001;OECD, 2005).…”

Section: Introductionmentioning

confidence: 99%

Evaluation of the home help service and its impact on the informal caregiver's burden of dependent elders

Carretero

Garcés

Ródenas

2006

Int J Geriat Psychiatry

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“…The importance of exploring unique perceptions within different cultural groups and within different Aboriginal populations is emphasized by John et al (2001) who indicate that in the United States, "the cultural construction of dementia varies within and across American Indian tribes in accordance with individually held health beliefs that are part of larger cultural systems" (p. 39). Without understanding the cultural beliefs that influence perceptions, experience, and expression of dementia among Aboriginal people living in Saskatchewan, it is difficult to conduct appropriate assessments and to provide effective services to individuals.…”

Section: Cultural Perceptions Of Dementiamentioning

confidence: 99%

Aboriginal Experiences of Aging and Dementia in a Context of Sociocultural Change: Qualitative Analysis of Key Informant Group Interviews with Aboriginal Seniors

Lanting

Crossley

Morgan

et al. 2011

J Cross Cult Gerontol

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Examining the role of culture and cultural perceptions of aging and dementia in the recognition, diagnosis, and treatment of age-related cognitive impairment remains an understudied area of clinical neuropsychology. This paper describes a qualitative study based on a series of key informant group interviews with an Aboriginal Grandmothers Group in the province of Saskatchewan. Thematic analysis was employed in an exploration of Aboriginal perceptions of normal aging and dementia and an investigation of issues related to the development of culturally appropriate assessment techniques. Three related themes were identified that highlighted Aboriginal experiences of aging, caregiving, and dementia within the healthcare system: (1) cognitive and behavioural changes were perceived as a normal expectation of the aging process and a circular conception of the lifespan was identified, with aging seen as going back "back to the baby stage", (2) a "big change in culture" was linked by Grandmothers to Aboriginal health, illness (including dementia), and changes in the normal aging process, and (3) the importance of culturally grounded healthcare both related to review of assessment tools, but also within the context of a more general discussion of experiences with the healthcare system. Themes of sociocultural changes leading to lifestyle changes and disruption of the family unit and community caregiving practices, and viewing memory loss and behavioural changes as a normal part of the aging process were consistent with previous work with ethnic minorities. This research points to the need to understand Aboriginal perceptions of aging and dementia in informing appropriate assessment and treatment of age-related cognitive impairment and dementia in Aboriginal seniors.

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Toward the Conceptualization and Measurement of Caregiver Burden Among Pueblo Indian Family Caregivers

Abstract: By identifying the specific type of burden that a caregiver experiences, interventions can be targeted more accurately to support family caregiving.

Cited by 36 publications

References 34 publications

Caregiving among American Indians and Alaska Natives with cancer

Caregiving among American Indians and Alaska Natives with cancer

Evaluation of the home help service and its impact on the informal caregiver's burden of dependent elders

Aboriginal Experiences of Aging and Dementia in a Context of Sociocultural Change: Qualitative Analysis of Key Informant Group Interviews with Aboriginal Seniors

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