Patient self-management of disease is increasingly supported by technologies that can monitor a wide range of behavioural and biomedical parameters. Incorporated into everyday devices such as cell phones and clothes, these technologies become integral to the psychosocial aspects of everyday life. Many technologies are likely to be marketed directly to families with ill members, and families may enlist the support of clinicians in shaping use. Current ethical frameworks are mainly conceptualised from the perspective of caregivers, researchers, developers and regulators in (...) order to ensure the ethics of their own practices. This paper focuses on families as autonomous decision-makers outside the regulated context of healthcare. We discuss some morally relevant issues facing families in their decisions to monitor the health-related behaviours of loved ones. An example – remote parental monitoring of adolescent blood glucose – is presented and discussed through the lens of two contrasting accounts of ethics; one reflecting the predominant focus on health outcomes within the health technology assessment (HTA) framework and the other that attends to the broader sociocultural contexts shaping technologies and their implications. Issues discussed include the focus of assessments, informed consent and child assent, and family co-creation of system characteristics and implications. The parents’ decisions to remotely monitor their child has relational implications that are likely to influence conflict levels and thus also health outcomes. Current efforts to better integrate outcome assessments with social and ethical assessments are particularly relevant for informed decision-making about health monitoring technologies in families. (shrink)

The Swedish welfare debate increasingly focuses on market liberal notions and its healthcare perspective aims for more patient‐centered care. This article examines the new Swedish Patient Act describing and analyzing how the patient is constructed in government documents. This study takes a Foucauldian discourse analysis approach following Willig's analysis guide. The act contains an entitlement discourse for patients and a requirement discourse for healthcare personnel. These two discourses are governed by a values‐based healthcare discourse. Neo‐liberal ideology, in the form of (...) New Public Management discourse, focusing on the value of efficiency and competition, is given a hegemonic position as laws and regulations are used to strengthen it. The new Swedish Patient Act seems to further strengthen this development. The Act underlines the increased entitlement for patients, but it is not legally binding as it offers patients only indirect entitlement to influence and control their care. To safeguard the patient's entitlement under the Patient Act, healthcare personnel should be made aware of the contents of the Act, so that they can contribute to the creation of systems and working methods that facilitate respect of the Act's provisions in daily healthcare work. (shrink)

This study aimed to explore the conditions for nurses' daily patient education work by focusing on managers' way of speaking about the patient education provided by nurses in hospital care. An explorative, qualitative design with a social constructionist perspective was used. Data were collected from three focus group interviews and analysed by means of critical discourse analysis. Discursive practice can be explained by the ideology of hegemony. Due to a heavy workload and lack of time, managers could ‘see’ neither their (...) role as a supporter of the patient education provided by nurses, nor their role in the development of nurses' pedagogical competence. They used organisational, financial, medical and legal reasons for explaining their failure to support nurses' provision of patient education. The organisational discourse was an umbrella term for ‘things’ such as cost‐effectiveness, which were prioritised over patient education. There is a need to remove managerial barriers to the professional development of nurses' patient education. Managers should be responsible for ensuring and overseeing that nurses have the prerequisites necessary for providing patient education as well as for enabling continuous reflective dialogue and opportunities for learning in practice. (shrink)