Dataset Information

Exploring Advance Care Planning in Taiwanese Indigenous Cancer Survivors: Proposal for a Pilot Case-Control Study.

ABSTRACT: Research on Taiwanese indigenous cancer survivors' end-of-life (EOL) planning is still in its infancy, despite recent government and societal efforts to promote quality EOL care. Previous national studies in Taiwan have characterized indigenous peoples as a socioeconomically disadvantaged minority group. Compared with their mainstream cohorts, these remote residents are vulnerable to multiple social welfare problems, receiving and accessing little in the way of health care in rural mountain areas. Although advance care planning (ACP) has been shown to help patients achieve better quality of dying, very little is known about indigenous intentions for such interventions. Relevant studies are scarce in Taiwan, and programs for cancer survivors have been based almost entirely on nonindigenous populations. Since there has been no research on Taiwanese indigenous people's aims for ACP, there is a need to understand the impact of survivorship on ACP readiness among those who are currently living with, through, and beyond cancer.We aim to identify differences in ACP intent and readiness among indigenous peoples with and without cancer diagnoses. We will identify the impact of factors such as tribal cultural beliefs and quality of life along with cancer exposure on the outcome of ACP readiness differences. In particular, we will examine the effects of ACP knowledge from previous ACP participation, EOL care experiences, and personal registry status of Do-Not-Resuscitate (DNR) in the national database. A secondary objective is to describe indigenous people's intent to participate in public education related to EOL planning.A descriptive case-control study (N=200) is proposed where controls are matched to cases' attributes of age, gender, and cancer diagnosis. This matching analysis allows assessment of cancer as an exposure while taking into account age and gender as confounding variables. We are currently in the process of training personnel and extracting clinical and administrative information from the health care system of collaborating facilities. This carefully designed study provides a unique opportunity because for the first time in Taiwan, cancer survivorship and ACP readiness for EOL planning will be examined among difficult-to-reach indigenous peoples.We plan to complete this study in approximately 3 years.In this study, we expect to survey palliative care usage in the remote indigenous group, understand factors that influence ACP readiness, and later foster culturally appropriate ACP public participation and policies in order to facilitate collaboration between cancer health care providers in various Taiwanese subcultures.

SUBMITTER: Li IF

PROVIDER: S-EPMC5754565 | biostudies-other | 2017 Dec

REPOSITORIES: biostudies-other

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Exploring Advance Care Planning in Taiwanese Indigenous Cancer Survivors: Proposal for a Pilot Case-Control Study.

Li In-Fun IF Hsiung Yvonne Y

JMIR research protocols 20171221 12

<h4>Background</h4>Research on Taiwanese indigenous cancer survivors' end-of-life (EOL) planning is still in its infancy, despite recent government and societal efforts to promote quality EOL care. Previous national studies in Taiwan have characterized indigenous peoples as a socioeconomically disadvantaged minority group. Compared with their mainstream cohorts, these remote residents are vulnerable to multiple social welfare problems, receiving and accessing little in the way of health care in ...[more]

PMID: 29269340

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Project description:BackgroundAdvance care planning (ACP) is particularly appropriate for persons with early dementia (PWED) since it promotes conversations about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients' observed behavior, emphasizes prospective and relational autonomy, and may be generally consistent with older persons' decision-making needs. However, despite evidence of its benefits, ACP is yet to become widely used among PWED. In this paper, we present a dementia-specific tool developed in Western Switzerland, discuss results of a pilot trial designed to promote ACP among PWED and their relatives, and discuss the feasibility and acceptability of the intervention and the study protocol in prevision of a large scale trial.MethodsThis one-arm pre-post pilot trial consisted of four visits, with visits 2 and 3 being the ACP intervention. Quantitative outcome measures during visit 1 and 4 assessed the aptitude of the intervention to support PWED autonomy and relatives' knowledge of PWED's preferences. Feasibility was explored according to how the recruitment procedure unfurled and based on the necessary revisions to the study protocol and healthcare providers' reason for excluding a PWED from the study. Acceptability was assessed according to pre-post evaluations, difficulties regarding the intervention or trial participation, and pre-post qualitative interviews regarding participants' reasons to participate to the study, satisfaction with the tool and difficulties perceived.ResultsThe ACP intervention itself was well received by PWED and their relatives that expressed satisfaction with the procedure, especially regarding the opportunity to discuss a sensitive topic with the help of a facilitator. Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to clinical routines, 4) to engage PWED and their relatives in ACP, and 5) to design a trial that does not burden PWED. Despite these challenges, the intervention increased the number of advance directives, the concordance between PWED's preferences and relatives' decision on their behalf, and relatives' perceived control over healthcare decisions.ConclusionMisconceptions about dementia and ACP, in the patient, relatives, and healthcare providers, combined with structural and institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we conclude that a large scale trial to test a dementia-specific tool of ACP is currently not feasible in Western Switzerland and should be endorsed in a systemic approach of ACP.Trial registrationThis trial was registered in the database clinicaltrial.gov with the number NCT03615027 .

Project description:Aims and objectiveAdvance care planning (ACP) is the communication process of documenting future healthcare preferences in case patients are unable to make healthcare decisions for themselves. Research suggests ACP discussions among persons living with HIV (PLHIV) are infrequent overall and may differ by gender and/or race.BackgroundPrevious literature has displayed that African Americans are less likely than other racial groups to use advanced care planning, palliative care or hospice, but does not conclusively account for ACP among PLHIV. African American PLHIV rely on informal care that may be differ by gender and represents an important pathway to increase ACP.DesignThe study was mixed methods and observational.MethodsParticipants completed self-report surveys (N = 311) and were interviewed (n = 11). Poisson regression (quantitative) and grounded theory analyses (qualitative) were implemented, using COREQ checklist principles to ensure study rigor.ResultsLess than half had discussed ACP (41.2%; N = 267). More ACP knowledge predicted 76% lower likelihood of ACP discussions among women. Men who spent more time caregiving in a given week were nearly 3 times more likely to discuss ACP than men who spent less time caregiving. Women were more likely than men to be caregivers and were also expected to serve in that role more than men, which was qualitatively described as 'being a woman'.ConclusionsThe present study is one of few studies exploring ACP among caregivers in African American populations hardest hit by HIV. Results suggest that ACP skill building and education are critical for African Americans living with HIV to promote ACP discussions with their caregivers. Knowledge about ACP topics was low overall even when healthcare had recently been accessed. Support reciprocity and gender-specific communication skill building may facilitate ACP in African American HIV informal caregiving relationships.Relevance to clinical practiceResults underscore the need for ACP education which includes healthcare providers and caregivers, given African Americans' preference for life-sustaining treatments at end-of-life. ACP is crucial now more than ever, as COVID-19 complicates care for older adults with HIV at high risk of complications.

Dataset Information

Exploring Advance Care Planning in Taiwanese Indigenous Cancer Survivors: Proposal for a Pilot Case-Control Study.

Publications

Exploring Advance Care Planning in Taiwanese Indigenous Cancer Survivors: Proposal for a Pilot Case-Control Study.

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