This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides a (...) specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

Self‐care, or self‐management, is presented in healthcare policy as a precursor to patient empowerment and improved patient outcomes. Alternatively, critiques of the self‐care agenda suggest that it represents an over‐reliance on individual autonomy and responsibility, without adequate support, whereby ‘self‐care’ is potentially unachievable and becomes ‘care left undone’. In this sense, self‐care contributes to a blame culture where ill‐health is attributed to personal behaviours or lack thereof. Furthermore, self‐care may represent a covert form of rationing, as the fiscal means to (...) enable effective self‐care and supplement, or replace, self‐care capacities, is not provided. This paper explores these arguments through a contemporary ethical analysis of the self‐care agenda. The terms self‐care and self‐management are used interchangeably throughout whereby self‐management is understood as a point in the wider self‐care continuum. (shrink)

BackgroundThis paper represents a portion of the findings from one of the first research studies eliciting the lived experience of adults with an early diagnosis of Phenylketonuria living in Ireland. Ireland has one of the highest prevalence rates of PKU in Europe, however, little is known about the experience of Irish adults with PKU. Furthermore, Ireland is one of the first countries in the world to introduce neonatal screening followed by the introduction of long-term dietary therapy over 50 years ago. (...) This study presents the first comprehensive assessment of the lived experience of Irish adults with PKU on long term dietary therapy.MethodsNarrative data was collected from eleven self-selected participants, using semi-structured interviews. The interviews were divided into five sections focused on eliciting a holistic understanding of the lived experience of adults with PKU living in Ireland. Thematic analysis was guided by Colaizzi's Framework in conjunction with NVivo qualitative data analysis software.FindingsFindings from the original research encompassed a broad understanding of the lived experience of adults with PKU living in Ireland, including factors influencing dietary therapy and managing PHE blood levels. The themes being discussed within this article are those which appear to be least represented within current literature: living with PKU, including reproductive health, the importance of self-management and establishing routine, support networks in adulthood and concerns regarding aging with PKU.ConclusionIt was evident from the findings that a diagnosis of PKU can influence how adults with PKU may experience aging and their own mortality. These findings offer new insight into the vulnerability attached to the experience of aging with PKU and may be beneficial to advocacy groups and for future development of policy and practice. (shrink)