Ethics

Purpose Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions.

‘Thou shalt not lie’; ‘the truth, the whole truth, and nothing but the truth’. Both morality and the law contain clear statements about the importance of veracity. Yet, as Ginny Russell so eloquently describes, based upon personal experience with her mother in the UK, truth telling in dementia is fraught with problems. The problems are not only ethical, but can also be practical and emotional. They can arise on a daily basis for the family and friends of people with dementia, as well as for care staff and professionals.

Context Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. Objectives To test the effectiveness of an intervention to help surrogate decision makers.

Good care is often positioned as a natural by-product of the widespread availability of good information (‘inform to care’). This paper contests this association through empirical investigation of the information–care relationship in the context of dementia care.

This paper reports on some of the findings from a collaborative study funded by the Big Lottery and led by Crossroads Caring for Carers about carers for people with mental health problems. The protection and use of information in mental health are firmly rooted in ethics and professional codes, law and policy, as well as values and professional practice. While government initiatives have attempted to augment the role and rights of carers, policy guidance involving information sharing between professionals and carers has failed to deal with the practical dilemmas of patient confidentiality.

Fall detectors are a form of remote monitoring assistive technology that have the potential to enhance the wellbeing of adults at risk from falling. In this paper, the ethical issues raised by the use of fall detectors are examined. The fall detection devices currently available are outlined, and a summary of how these devices require social-care services, or family carers, to respond in particular ways, is provided. The ethical issues associated with the use of fall detectors are classified under four headings: autonomy, privacy, benefit, and the use of resources.

Changes to approaches in dementia care and subsequent services over the last decade have meant that quality of care for people with dementia and their carers has undoubtedly improved. However, few in-depth dementia service evaluation studies are documented. Those that are tend to focus on traditional evaluation measures such as length of stay or functional improvement, or they concentrate on the perspectives of carers. This study used multiple methods within Fourth Generation Methodology to evaluate (SPECAL) Specialized Early Care of Alzheimer's, a dementia care service and approach.

The present paper provides an overview of the application of the key ethical issues which arose in an EU-funded research, technology and development project, Assisting Carers using Telematics Interventions to meet Older Persons' Needs (ACTION). The primary aim of the ACTION project was to support frail older people and their family carers in their own homes across England, Northern Ireland, the Republic of Ireland, Sweden and Portugal via the use of user-friendly information and communication technology.

Aims. This study aimed to provide an in-depth understanding of the process of hospital discharge experienced by the carers of patients ‘at risk’ of unsuccessful discharge from medical wards in three hospitals in the North of England.