Dataset Information

Perspectives on disclosure of the dementia diagnosis among primary care physicians in Japan: a qualitatively driven mixed methods study.

ABSTRACT:

Background

The number of dementia patients in Japan is projected to reach seven million by 2025. While modern ethicists have largely reached the conclusion that full disclosure of dementia serves the best interest of patient, the implications of disclosure of a dementia diagnosis remains an underexplored area of research in Japan. The purpose of this study was to explore primary care physicians' perspectives relative to the practice of disclosure of the dementia diagnosis.

Methods

In this qualitatively driven mixed methods project, we conducted semi-structured interviews with 24 primary care physicians using purposeful sampling to identify rural and urban representation. All interview recordings were transcribed verbatim and analyzed thematically. The research team iteratively conducted discussions of the concepts as they emerged until reaching thematic saturation. The summary was distributed to the participants for member checking and we incorporated their feedback into the final analysis.

Results

Of 24 participants, 12 practice in rural areas and 12 practice in urban/suburban areas. Participants' attitudes varied in whether or not to disclose dementia diagnosis to the patients, and in the level of clarity of the name and the prognosis of the disease. Participants who were more comfortable in practicing disclosure were communicating collectively to the patients and their family members and those who were less comfortable practicing disclosure were concerned about patients' feelings and had negative perceptions given the insidious progression of the disease.

Conclusion

We found substantive individual differences in the approach to disclosure of the diagnosis of dementia and the level of comfort among primary care physicians. More dialogue about this issue and training to equip primary care physicians lacking confidence in their approach may be required.

SUBMITTER: Abe M

PROVIDER: S-EPMC6533714 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

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Publications

Perspectives on disclosure of the dementia diagnosis among primary care physicians in Japan: a qualitatively driven mixed methods study.

Abe Michiko M Tsunawaki Shinji S Matsuda Masakazu M Cigolle Christine T CT Fetters Michael D MD Inoue Machiko M

BMC family practice 20190523 1

<h4>Background</h4>The number of dementia patients in Japan is projected to reach seven million by 2025. While modern ethicists have largely reached the conclusion that full disclosure of dementia serves the best interest of patient, the implications of disclosure of a dementia diagnosis remains an underexplored area of research in Japan. The purpose of this study was to explore primary care physicians' perspectives relative to the practice of disclosure of the dementia diagnosis.<h4>Methods</h4 ...[more]

PMID: 31122197

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Project description:BackgroundDespite growing evidence that many people with dementia want to know their diagnosis, there is wide variation in attitudes of professionals towards disclosure. The disclosure of the diagnosis of dementia is increasingly recognised as being a process rather than a one-off behaviour. However, the different behaviours that contribute to this process have not been comprehensively defined. No intervention studies to improve diagnostic disclosure in dementia have been reported to date. As part of a larger study to develop an intervention to promote appropriate disclosure, we sought to identify important disclosure behaviours and explore whether supplementing a literature review with other methods would result in the identification of new behaviours.MethodsTo identify a comprehensive list of behaviours in disclosure we conducted a literature review, interviewed people with dementia and informal carers, and used a consensus process involving health and social care professionals. Content analysis of the full list of behaviours was carried out.ResultsInterviews were conducted with four people with dementia and six informal carers. Eight health and social care professionals took part in the consensus panel. From the interviews, consensus panel and literature review 220 behaviours were elicited, with 109 behaviours over-lapping. The interviews and consensus panel elicited 27 behaviours supplementary to the review. Those from the interviews appeared to be self-evident but highlighted deficiencies in current practice and from the panel focused largely on balancing the needs of people with dementia and family members. Behaviours were grouped into eight categories: preparing for disclosure; integrating family members; exploring the patient's perspective; disclosing the diagnosis; responding to patient reactions; focusing on quality of life and well-being; planning for the future; and communicating effectively.ConclusionThis exercise has highlighted the complexity of the process of disclosing a diagnosis of dementia in an appropriate manner. It confirms that many of the behaviours identified in the literature (often based on professional opinion rather than empirical evidence) also resonate with people with dementia and informal carers. The presence of contradictory behaviours emphasises the need to tailor the process of disclosure to individual patients and carers. Our combined methods may be relevant to other efforts to identify and define complex clinical practices for further study.

Project description:OBJECTIVES:The aim of this study was to estimate the frequency of disclosure to and testing of contacts of patients with hepatitis B virus (HBV) in Zambia. DESIGN:We used a convergent parallel mixed-method research design including a quantitative survey and focus group discussions with patients with HBV. SETTING:A university hospital in Lusaka, Zambia. PARTICIPANTS:79 hepatitis B surface antigen (HBsAg)-positive, HIV-negative, adults (18+ years) receiving HBV care completed a quantitative survey and 32 also participated in a focus group discussion. OUTCOMES AND ANALYSIS:Contacts of patients with HBV were enumerated and patient-reported disclosure, contact testing and contact HBV test results were used to develop a testing cascade. Using multivariable logistic regression, we identified factors associated with disclosure of HBV status. In focus groups, we explored how index patient knowledge and awareness of their condition shaped perspectives on contact disclosure and testing. Focus groups coding and analysis followed a thematic analysis approach. RESULTS:Among 79 patients with HBV (median age 35 years; 26.6% women), the majority reported disclosure to ?1 contact. According to the index patients' knowledge, of 776 contacts enumerated, 326 (42.1%) were disclosed to, 77 (9.9%) were tested, 67 (8.6%) received results and 8 (11.9%) were HBsAg-positive. Increased stigma score was associated with reduced disclosure. In focus groups, HBV awareness, knowledge and stigma emerged as barriers to disclosure and referral of contacts for testing. Association of HBV with HIV-related stigma was also reported as a strong barrier to contact disclosure and testing and to taking antivirals for HBV monoinfection. CONCLUSIONS:HBV contact disclosure and testing were feasible and yielded new diagnoses in Zambia. A better understanding of barriers to seeking HBV testing and treatment is needed to scale-up this important intervention in Africa. TRIALS REGISTRATION NUMBER:NCT03158818.

Project description:BackgroundThe development and description of interventions to change professional practice are often limited by the lack of an explicit theoretical and empirical basis. We set out to develop an intervention to promote appropriate disclosure of a diagnosis of dementia based on theoretical and empirical work.MethodsWe identified three key disclosure behaviours: finding out what the patient already knows or suspects about their diagnosis; using the actual words 'dementia' or 'Alzheimer's disease' when talking to the patient; and exploring what the diagnosis means to the patient. We conducted a questionnaire survey of older peoples' mental health teams (MHTs) based upon theoretical constructs from the Theory of Planned Behaviour (TPB) and Social Cognitive Theory (SCT) and used the findings to identify factors that predicted mental health professionals' intentions to perform each behaviour. We selected behaviour change techniques likely to alter these factors.ResultsThe change techniques selected were: persuasive communication to target subjective norm; behavioural modelling and graded tasks to target self-efficacy; persuasive communication to target attitude towards the use of explicit terminology when talking to the patient; and behavioural modelling by MHTs to target perceived behavioural control for finding out what the patient already knows or suspects and exploring what the diagnosis means to the patient. We operationalised these behaviour change techniques using an interactive 'pen and paper' intervention designed to increase intentions to perform the three target behaviours.ConclusionIt is feasible to develop an intervention to change professional behaviour based upon theoretical models, empirical data and evidence based behaviour change techniques. The next step is to evaluate the effect of such an intervention on behavioural intention. We argue that this approach to development and reporting of interventions will contribute to the science of implementation by providing replicable interventions that illuminate the principles and processes underlying change.

Dataset Information

Perspectives on disclosure of the dementia diagnosis among primary care physicians in Japan: a qualitatively driven mixed methods study.

Background

Methods

Results

Conclusion

Publications

Perspectives on disclosure of the dementia diagnosis among primary care physicians in Japan: a qualitatively driven mixed methods study.

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