Dataset Information

Barriers and Best Practices in Disclosing a Dementia Diagnosis: A Clinician Interview Study.

ABSTRACT: The vast majority of individuals with dementia want to receive a diagnosis. Research suggests, however, that only a fraction of individuals with dementia receive a diagnosis and patients and families often feel the information is poorly explained. We thus aimed to assess clinician-reported barriers to dementia disclosure and recommendations for giving a dementia diagnosis. To accomplish this, we performed telephone interviews with 15 clinicians from different specialties using a semi-structured interview guide. Transcripts were analyzed thematically. Clinician-reported barriers fit 3 categories: patient and caregiver-related barriers, clinician-related barriers, and barriers related to the triadic interaction. Patient and caregiver-related barriers included lack of social support, misunderstanding the diagnosis, and denial. Clinician barriers included difficulty giving bad news, difficulty communicating uncertainty, and lack of time. Triadic interaction barriers included challenges meeting multiple goals or needs and family requests for non-disclosure. Recommendations for best practice included for clinicians to foster relationships, educate patients and family, and take a family-centered approach. Clinicians described recommendations for fostering relationships such as using empathic communication and developing and maintaining connection. Educating patients and families included tailoring communication, explaining how the diagnosis was reached, and following up. Family approaches included meeting with family members prior to delivering the diagnosis and involving the caregiver in the discussion. Findings may inform updated recommendations for best practices when communicating a dementia diagnosis.

SUBMITTER: Wollney EN

PROVIDER: S-EPMC9729996 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature

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Barriers and Best Practices in Disclosing a Dementia Diagnosis: A Clinician Interview Study.

Wollney Easton N EN Armstrong Melissa J MJ Bedenfield Noheli N Rosselli Monica M Curiel-Cid Rosie E RE Kitaigorodsky Marcela M Levy Ximena X Bylund Carma L CL

Health services insights 20221205

The vast majority of individuals with dementia want to receive a diagnosis. Research suggests, however, that only a fraction of individuals with dementia receive a diagnosis and patients and families often feel the information is poorly explained. We thus aimed to assess clinician-reported barriers to dementia disclosure and recommendations for giving a dementia diagnosis. To accomplish this, we performed telephone interviews with 15 clinicians from different specialties using a semi-structured ...[more]

PMID: 36506598

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Project description:BackgroundIndividuals with cognitive impairment and their families place a high value on receiving a dementia diagnosis, but clinician approaches vary. There is a need for research investigating experiences of giving and receiving dementia diagnoses. The current study aimed to investigate clinician approaches to giving dementia diagnoses as part of a larger study investigating patient, caregiver, and clinician experiences during the diagnosis encounter.MethodInvestigators conducted telephone interviews with Florida-based clinicians who give dementia diagnoses either rarely or commonly. Interviews employed a semi-structured interview guide querying communication practices used by clinicians when giving dementia diagnoses and how clinicians learned to give dementia diagnoses. Investigators used a descriptive qualitative design to conduct a thematic analysis of data.ResultsFifteen Florida-based clinicians participated, representing diverse backgrounds related to gender, race/ethnicity, specialty, and practice setting. Participants reported using patient- and family-centered communication practices including checking patient understanding, communicating empathically, and involving family members. Some clinicians explicitly asked patients and/or family members about their preferences regarding diagnosis disclosure; many clinicians tailored their disclosure based on patient and family characteristics or reactions. Some clinicians reported using specific diagnoses, while others used general terms such as "memory disorder." Clinicians reported positively framing information, including instilling hope, focusing on healthy behaviors, and discussing symptom management. Finally, clinicians provided patient/family education and arranged follow up. Clinicians reported learning approaches to dementia diagnosis disclosure through formal training and self-education.ConclusionsDiverse Florida-based clinicians described dementia disclosure practices largely consistent with published guidance, but clinicians varied on approaches relating to soliciting patient disclosure preferences and terminology used. Clinicians caring for diverse populations described that cultural background affects the disclosure process, but more research is needed regarding this finding and best practices for individuals from different backgrounds.

Project description:OBJECTIVE:We sought to investigate the concept and practices of 'clinician presence', exploring how physicians and professionals create connection, engage in interpersonal interaction, and build trust with individuals across different circumstances and contexts. DESIGN:In 2017-2018, we conducted qualitative semistructured interviews with 10 physicians and 30 non-medical professionals from the fields of protective services, business, management, education, art/design/entertainment, social services, and legal/personal services. SETTING:Physicians were recruited from primary care clinics in an academic medical centre, a Veterans Affairs clinic, and a federally qualified health centre. PARTICIPANTS:Participants were 55% men and 45% women; 40% were non-white. RESULTS:Qualitative analyses yielded a definition of presence as a purposeful practice of awareness, focus, and attention with the intent to understand and connect with individuals/patients. For both medical and non-medical professionals, creating presence requires managing and considering time and environmental factors; for physicians in particular, this includes managing and integrating technology. Listening was described as central to creating the state of being present. Within a clinic, presence might manifest as a physician listening without interrupting, focusing intentionally on the patient, taking brief re-centering breaks throughout a clinic day, and informing patients when attention must be redirected to administrative or technological demands. CONCLUSIONS:Clinician presence involves learning to step back, pause, and be prepared to receive a patient's story. Building on strategies from physicians and non-medical professionals, clinician presence is best enacted through purposeful intention to connect, conscious navigation of time, and proactive management of technology and the environment to focus attention on the patient. Everyday practice or ritual supporting these strategies could support physician self-care as well as physician-patient connection.

Dataset Information

Barriers and Best Practices in Disclosing a Dementia Diagnosis: A Clinician Interview Study.

Publications

Barriers and Best Practices in Disclosing a Dementia Diagnosis: A Clinician Interview Study.

Similar Datasets

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