Exploring Information and Referral Needs of Individuals with Dementias and Informal Caregivers in Rural and Remote Areas

M, Longstreth; McKibbin, Christine L.; Steinman, Bernard A.; Worth, Andrea Slosser; Carrico, Catherine

doi:10.1080/07317115.2019.1710735

Cited by 7 publications

(13 citation statements)

References 33 publications

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“…Studies have described the needs of rural ADRD caregivers, 12,13 although little research has been conducted with diverse rural caregivers, including the strengths of these populations that may be leveraged to improve health outcomes. 31 Furthermore, few published studies provide clear guidance about how to develop and validate strengths-based community survey assessments for diverse rural populations. This article provides details about the systematic Delphi process our research team used to develop and content-validate a community assessment survey for rural white, rural Latinx, and rural AI/AN ADRD family caregivers that focuses on needs, as well as culturally-based strengths, assets, and resources.…”

Section: Discussionmentioning

confidence: 99%

“…12,13 However, few have focused on diverse rural ADRD caregivers in a comprehensive way, and even fewer have explicitly assessed culturally-based strengths that may impact their experiences with caregiving. 31 To develop targeted supports for rural Latinx and AI/AN caregivers, it is critical that we understand both the needs and strengths of these populations and that we develop this understanding through a systematic, community-informed, partnered approach. 32,33 The purpose of this study is to extend the limited body of research focusing on rural white, Latinx, and AI/AN ADRD family caregivers in order to work toward improved health outcomes for these populations.…”

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confidence: 99%

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Development and Validation of a Community Assessment Survey for Diverse Rural Family Caregivers of People With Alzheimer Disease and Related Dementias

McCarthy

Hustead

Bacon

et al. 2021

Family &Amp; Community Health

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Many individuals with Alzheimer disease and related dementias receive care from family members and friends. Rurality adds increased complexity to care, especially for diverse caregivers. This study details the development and content validation process for a community assessment survey for rural white, Latinx, and American Indian/Alaska Native Alzheimer disease and related dementias caregivers. Foundational survey items were based upon instruments validated with diverse rural caregivers. A modified Delphi process (2 rounds) was used to refine items. The process concluded when 75%+ of experts agreed that the survey was (1) inclusive of different cultural groups; (2) respectful of cultural values and norms; (3) comprehensive with respect to needs, assets, and resources, and (4) relevant to the experiences of diverse rural caregivers. Round 1 of the process (N = 9 panelists) resulted in the elimination of 2 survey sections, a greater focus on issues including transportation and roles of extended family members, and the inclusion of open-ended questions. Round 2 (N = 6 panelists) resulted in further improvements, particularly to the sections about cultural customs, beliefs, and traditions and interactions with health care and other providers. Benefits of the process included raising awareness about rural caregiving issues and maximizing data quality. Challenges included honoring the diversity of respondents' opinions and balancing research rigor with community utility. This community assessment survey may help researchers better understand the needs and culturally-based strengths of diverse rural family caregivers.

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

Development and Validation of a Community Assessment Survey for Diverse Rural Family Caregivers of People With Alzheimer Disease and Related Dementias

McCarthy

Hustead

Bacon

et al. 2021

Family &Amp; Community Health

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Section: Introductionmentioning

confidence: 99%

“…There are unique burdens and challenges for caregivers living in regional and remote areas [14][15][16]. They may experience poorer access to health care and support services, difficulties coping with the logistical challenges of regular travel or relocation during the patient's treatment, disruption to work capacity, financial instability, and social disconnection [14][15][16]. Furthermore, in regional and remote communities where access to medical facilities is limited, caregivers may be required to take on roles that in urban areas would be fulfilled by professional support services.…”

Section: Introductionmentioning

confidence: 99%

The Supportive Care Needs of Regional and Remote Cancer Caregivers

et al. 2021

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Objective: As cancer survival rates continue to increase, so will the demand for care from family and friends, particularly in more isolated settings. This study aims to examine the needs of cancer caregivers in regional and remote Australia. Methods: A total of 239 informal (i.e., non-professional) cancer caregivers (e.g., family/friends) from regional and remote Queensland, Australia, completed the Comprehensive Needs Assessment Tool for Cancer Caregivers (CNAT-C). The frequencies of individuals reporting specific needs were calculated. Logistic regression analyses assessed the association between unmet needs and demographic characteristics and cancer type. Results: The most frequently endorsed needs were lodging near hospital (77%), information about the disease (74%), and tests and treatment (74%). The most frequent unmet needs were treatment near home (37%), help with economic burden (32%), and concerns about the person being cared for (32%). Younger and female caregivers were significantly more likely to report unmet needs overall (OR = 2.12; OR = 0.58), and unmet healthcare staff needs (OR = 0.35; OR = 1.99, respectively). Unmet family and social support needs were also significantly more likely among younger caregivers (OR = 0.35). Caregivers of breast cancer patients (OR = 0.43) and older caregivers (OR = 0.53) were significantly less likely to report unmet health and psychology needs. Proportions of participants reporting needs were largely similar across demographic groups and cancer type with some exceptions. Conclusions: Caregiver health, practical issues associated with travel, and emotional strain are all areas where regional and remote caregivers require more support. Caregivers’ age and gender, time since diagnosis and patient cancer type should be considered when determining the most appropriate supportive care.

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“…The time of diagnosis is one such event (e.g. Ducharme et al , 2014; Lee et al , 2019; Longstreth et al , 2020), and consensus has not been reached on whether caregivers seek, and are able to obtain, sufficient information at this time. The complex nature of dementia, both in terms of prognosis and patients’ health deterioration rates, leads to varied experiences among caregivers.…”

Section: Introductionmentioning

confidence: 99%

The information trust formation process for informal caregivers of people with dementia: a qualitative study

Sbaffi

Hargreaves

2021

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PurposeThis paper provides new insights on trust formation during information-seeking processes of informal caregivers of people with dementia and identifies the sources of information deemed as trustworthy by caregivers.Design/methodology/approachThe study adopts a phenomenological qualitative approach in the form of in-depth, semi-structured interviews with a sample of 20 informal caregivers.FindingsCaregivers trust sources that are perceived as authoritative and particularly value the information and advice provided by other caregivers. Trust in information can be divided into subjective and objective, but both are important precursors to the actual use of the information. The information available to caregivers is sufficient in quantity but inadequate in terms of ease of use, clarity and usefulness. Often, some key information needs remain unsatisfied due to the lack of timeliness, relevance and personalisation of the information.Practical implicationsThis paper provides recommendations for information and healthcare providers on how to improve communication and information relevance for informal caregivers of people with dementia.Originality/valueThis paper contributes to a more comprehensive perspective on caregivers’ information trust formation processes, which takes into account both the characteristics of the information and caregivers’ individual factors.

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Exploring Information and Referral Needs of Individuals with Dementias and Informal Caregivers in Rural and Remote Areas

Cited by 7 publications

References 33 publications

Development and Validation of a Community Assessment Survey for Diverse Rural Family Caregivers of People With Alzheimer Disease and Related Dementias

Development and Validation of a Community Assessment Survey for Diverse Rural Family Caregivers of People With Alzheimer Disease and Related Dementias

The Supportive Care Needs of Regional and Remote Cancer Caregivers

The information trust formation process for informal caregivers of people with dementia: a qualitative study

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