Journal of evaluation in clinical practice
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The overall aim of this paper is to provide practical insight into the way that professionals caring for a person with motor neurone disease (MND) can recognise, respect and respond to that person's temporality; that is, the person that they have been, that they are now and that they will be in the future. ⋯ We suggest MND has a significant impact on a person's lifeworld. The proposed person-centred care model focuses on understanding (interpreting) a person in a wider temporal frame and beyond the context of their illness. The expected collaborative outcomes are that: a person is acknowledged as more than a 'patient with MND' and that a professional is providing person-centred care based on individuality of the person, through a temporal lens. This requires a collaborative approach between the person, others and professionals. Such person-centred care, focused on individuality, may prevent a person experiencing life in crisis and suffering towards the end of life.
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Attending to treatment preferences is an element of person-centred care, reported as beneficial in improving treatment adherence, satisfaction, and outcome, in practice. The results of preference trials were inconsistent in supporting these benefits in intervention evaluation research. Informed by the conceptualisation of treatment preferences positing their indirect impact on outcomes, this narrative review aimed to summarise the evidence on the effects of preferences on enrolment; withdrawal or attrition; engagement, enactment, and satisfaction with treatment; and outcomes. ⋯ The results are attributed to conceptual and methodological issues including less-than-optimal assessment of treatment preferences, which contributes to ill-identified preferences, accounting for withdrawal, low enactment, and limited satisfaction with treatment. These treatment processes, in turn, mediate the impact of treatment preferences on outcomes. It is important to refine and standardise the methods for assessing preferences and to examine their indirect impact (mediated by treatment processes) on outcomes in future preference trials to validly identify their benefits.
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Observational Study
Comparing survey data to qualitative themes in patient stories to help researchers better identify pressing community healthcare needs.
Narrative medicine is a powerful approach for strengthening clinicians' therapeutic alliances with patients and helping them understand others' perspectives by giving patients a voice. MyPaTH Story Booth is a cross-sectional observational study that uses narrative medicine concepts to allow community participants to share their health and healthcare-related experiences through relatively unstructured interviews (i.e., stories). The archive forms a qualitative research 'commons' where researchers can learn about patient and caregiver perspectives and tailor research goals to better address community needs. Brief surveys allow storytellers to classify their stories so that the archive is searchable. ⋯ Survey items based on NLM Health Topics allowed people to categorize their health narratives into relevant, searchable topics making the database more accessible.
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Healthcare research exploring the lived experiences of health care professionals from different disciplines, such as nursing, medicine, and allied health, has repeatedly highlighted many methodological challenges, especially in understanding the individual human experience within complex systems. In response, complexity theory and phenomenological approaches emerged and evolved in ways that potentially offered researchers frameworks to inform an understanding of the individual human experience. However, while these two theoretical approaches inform a method of inquiry, there is a gap in understanding the phenomenon of 'being' and how this is embodied within complex systems such as the healthcare system. ⋯ The authors propose that an integrated framework, of phenomenology and complexity theory, can provide a platform for deeper understandings of the experiences of health professionals and contribute to healthcare scholarship.