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Using medical words with family caregivers.

ABSTRACT: Although there is poor communication about pain management between informal caregivers and hospice providers, little research has examined these interactions.This study explored communication between informal caregivers and hospice team members by investigating the use of medical words in care planning discussions.Transcripts of clinical communication between caregivers and hospice team members were reviewed for use of medical words, word placement (statement or question), whether or not the word was explained, and the caregiver's response to the word.As part of an ongoing randomized clinical trial in the midwestern United States, informal hospice caregivers participated in recorded hospice care planning discussions.A selection of videorecorded interactions from an ongoing study was analyzed.Hospice team members used six times as many medical words compared to caregivers. The majority of medical words used by caregivers and team members were drug names. Medical words were predominantly used as statements rather than questions that sought clarification. Three-fourths of medical words used by team members were not explained to caregivers. Caregivers provided little response to medical word use, indicating a lack of understanding.The propensity to use medical words during clinical communication with family caregivers is cautioned. In order to recognize the caregiver as a contributing team member, clinicians should limit the use of medical words, provide lay explanation alongside medical terminology, and use questions to check for understanding. More research is needed to determine assessment tools to capture the caregiver's level of understanding of medication and pain management protocol.

SUBMITTER: Wittenberg-Lyles E

PROVIDER: S-EPMC3776621 | biostudies-literature | 2013 Sep

REPOSITORIES: biostudies-literature

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Using medical words with family caregivers.

Wittenberg-Lyles Elaine E Goldsmith Joy J Oliver Debra Parker DP Demiris George G Kruse Robin L RL Van Stee Stephanie S

Journal of palliative medicine 20130812 9

<h4>Background</h4>Although there is poor communication about pain management between informal caregivers and hospice providers, little research has examined these interactions.<h4>Objective</h4>This study explored communication between informal caregivers and hospice team members by investigating the use of medical words in care planning discussions.<h4>Design</h4>Transcripts of clinical communication between caregivers and hospice team members were reviewed for use of medical words, word place ...[more]

PMID: 23937064

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Project description:Family caregivers and care providers are increasingly becoming more distressed and reaching a breaking point within current systems of care. First Nations family caregivers and the health and community providers employed in First Nations communities have to cope with colonial, discriminatory practices that have caused intergenerational trauma and a myriad of siloed, disconnected, and difficult-to-navigate federal-, provincial/territorial-, and community-level policies and programs. Indigenous participants in Alberta's Health Advisory Councils described Indigenous family caregivers as having more difficulty accessing support than other Alberta caregivers. In this article, we report on family caregivers', providers', and leaders' recommendations to support First Nations family caregivers and the health and community providers employed in First Nations. We used participatory action research methods in which we drew on Etuaptmumk (the understanding that being in the world is the gift of multiple perspectives) and that Indigenous and non-Indigenous views are complementary. Participants were from two First Nation communities in Alberta and included family caregivers (n = 6), health and community providers (n = 14), and healthcare and community leaders (n = 6). Participants advised that family caregivers needed four types of support: (1) recognize the family caregivers' role and work; (2) enhance navigation and timely access to services, (3) improve home care support and respite, and (4) provide culturally safe care. Participants had four recommendations to support providers: (1) support community providers' health and wellbeing; (2) recruit and retain health and community providers; (3) improve orientation for new providers; and (4) offer providers a comprehensive grounding in cultural awareness. While creating a program or department for family caregivers may be tempting to address caregivers' immediate needs, improving the health of First Nations family caregivers requires a population-based public health approach that focuses on meaningful holistic system change to support family caregivers.

Project description:BackgroundElderly end stage kidney patients face a decision concerning whether or not to initiate dialysis. In Asia, this decision is highly influenced by family caregivers. The objective of this paper was to understand patients' experience with and preferences for family involvement in treatment decisions, and via a series of hypothetical vignettes, to identify whether there was discordance in treatment preferences between patients and their caregivers, and how any potential conflicts were reconciled.MethodsWe conducted a survey with 151 elderly (aged ≥65) chronic kidney disease patients and their caregivers at outpatient renal clinics. The survey asked, when making treatment decisions, whom they wish makes the final decisions (i.e., preference) and who usually makes the final decisions (i.e., experience). The survey also presented a series of choice vignettes for managing patient's condition and asked respondents to choose between two hypothetical treatment profiles in each vignette. Patients and caregivers were first interviewed separately in tandem, and then were brought together to choose a treatment jointly for vignettes where the initial treatment choice differed within the dyad. We used multivariate regressions to investigate the predictors of discordance and reconciliation.ResultsWe found that most (51%) patients preferred and experienced (64%) significant involvement from caregivers. However, 38% of patients preferred to make final decisions alone but only 27% of patients did. In the hypothetical vignettes, caregivers chose the more intensive option (i.e., dialysis) more than patients did (26% vs 19%; p < 0.01). Overall, 44% of the dyads had discordance in at least 3 vignettes, and the odds of discordance within patient-caregiver dyads was higher when caregivers chose dialysis or treatment with the higher cost (p < 0.01). In half the cases, discordance resolved in the patients' favor, and this was more likely to be the case if the patient was employed and wanted to be in charge of final decisions (p < 0.01).ConclusionsOur results highlight the important role of caregivers in decision-making but also the potential for them to overstep. Clinicians should be aware of this challenge and identify strategies that minimize the chances that patients may receive treatments not consistent with their preferences.

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Using medical words with family caregivers.

Publications

Using medical words with family caregivers.

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