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The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study

2016; Cambridge University Press; Volume: 29; Issue: 1 Linguagem: Inglês

10.1017/s1041610216001484

1741-203X

Andrew Vince, Chris Clarke, Emma Wolverson,

Palliative Care and End-of-Life Issues

ABSTRACT Background: Literature indicates that people's experiences of receiving a diagnosis of dementia can have a lasting impact on well-being. Psychiatrists frequently lead in communicating a diagnosis but little is known about the factors that could contribute to potential disparities between actual and best practice with regard to diagnostic disclosure. A clearer understanding of psychiatrists’ subjective experiences of disclosure is therefore needed to improve adherence to best practice guidelines and ensure that diagnostic disclosure facilitates living well with dementia. Methods: This study utilized qualitative methodology. Semi-structured interviews conducted with 11 psychiatrists were analyzed using Interpretive Phenomenological Analysis (IPA). Results: Three superordinate and nine subordinate themes emerged from the data analysis. These included the following: (i) “The levels of well-being” (Continuing with life, Keeping a sense of who they are, Acceptance of the self), (ii) “Living well is a process” (Disclosure can set the scene for well-being, Positive but realistic messages, Whose role it is to support well-being?), and (iii) Ideal care versus real care (Supporting well-being is not prioritized, There isn't time, The fragmentation of care). Conclusions: Findings indicate that psychiatrists frame well-being in dementia as a multi-faceted biopsychosocial construct but that certain nihilistic attitudes may affect how well-being is integrated into diagnostic communication. Such attitudes were linked with the perceived threat of dementia and limitations of post-diagnostic care. Behaviors used to manage the negative affect associated with ethical and clinical tensions triggered by attempts to facilitate well-being at the point of diagnosis, and their impact on adherence to best practice disclosure, are discussed.