Self-care as care left undone? The ethics of the self-care agenda in contemporary healthcare policy.

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.

Patient autonomy and choice in healthcare: self-testing devices as a case in point.

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.

Research ethics application: a guide for the novice researcher.

The aim of this paper is to assist the novice researcher in the research ethics application process. The novice researcher in this context refers to any researcher negotiating a research ethics application for the first time. This may be a student or a more experienced registered nurse engaged in research activity. The paper applies ethical principles to the varied elements of a research ethics application form to explain the theoretical basis of the application criteria. The impetus for this paper arose following an internal audit of the decisions made by the research ethics committee of the nursing department at the Institute of Technology in Tralee, Ireland. The audit revealed the common reasons why full approval was not granted following initial review. This information prompted the development of a paper which would assist novice researchers in avoiding common errors and omissions in the research ethics application process. Despite the specific requirements of individual research ethics committees in different jurisdictions, the fundamental elements of research ethics approval remain unchanged. While the paper has local origins, its relevance holds a wider appeal. The paper takes a structured approach using the three ethical principles of respect for persons, beneficence, and justice, as outlined by the Belmont Report (1979) to provide a framework for discussion. Despite the advent of other frequently used frameworks for research ethics, the principles of the Belmont report remain constant as guidance for good practice in the research ethics context.

Moving through adulthood: The lived experience of Irish adults with PKU.

Background: This 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 (PKU) 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. Methods: Narrative 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 (1978) in conjunction with NVivo qualitative data analysis software. Findings: Findings 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. Conclusion: It 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.

The 1999 Irish nurses' strike: nursing versions of the strike and self-identity in a general hospital.

AIM: The aim of this paper is to report findings from a study investigating nurses' experiences of strike in one public general hospital in the Republic of Ireland. BACKGROUND: October 1999 heralded the first nationwide nurses strike in the Republic of Ireland. The strike reflected an international shift towards industrial action in a profession which had previously viewed such action as the antithesis of professional behaviour. METHODS: A focused ethnographic approach studied a group of striking Registered Nurses, not as a culture per se, but as a collection of individuals sharing a common human experience. A purposive sampling approach identified eight information-rich cases from a modified quota structure. Semi-structured interviews were carried out immediately prior to, during and at the end of the 1999 strike. The participants also maintained journals which were explored during the interviews. Data were analysed using a constant comparative approach, seeking to achieve category saturation. FINDINGS: Four strike versions were identified. The anticipatory version is constructed as an inevitable protest, the orientation version as history-making solidarity and the performing version as a job of work. The withdrawal version is constructed as a conspiracy from which nurses are excluded. These versions portray ongoing tension that is experienced between conflicting self-identities of Registered Nurses as nurses and as strikers. The analysis revealed strategies adopted to resolve tensions between these identities within the dimensions of carer, patient advocate, multidisciplinary team member and professional. CONCLUSIONS: Debate on such potentially contentious issues by individual nurses, hospital managers and union leaders may facilitate awareness and preparation in advance of any future industrial action. Strategies that may be helpful in the event of a strike include a prestrike orientation programme for the entire organization, a support system for staff during the strike and informal de-briefing among all staff in the context of a social gathering when the strike is over.