‘Confidentiality smokescreens’ and carers for people with mental health problems: the perspectives of professionals

Abstract

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. Professional codes and training neither explore nor develop the moral and ethical ground that stands between the service user's need for privacy and the carer's need for information. Policy and training guidance on confidentiality is scattered, ambiguous, confusing for professionals and inconsistent. There is uncertainty in practice about the information that professionals may share, and many professionals do not take into account carers' rights, not least to basic information to help them care for service users. 'Confidentiality smokescreens' may sometimes lead to information being withheld from carers. Professionals sometimes find it easier and safer to say nothing. In order to explore these issues from the perspectives of professionals, 65 participants were interviewed. The sample included directors and senior staff from the health, social care and voluntary sectors. Respondents were asked to comment at length on their understanding of confidentiality and information sharing with carers. Findings highlight confidentiality smokescreens that erect barriers that limit effective information sharing; issues involving confidentiality, risk management and carers in crisis; examples of good practice; and the need for the training of professionals on confidentiality issues and the rights of carers. This paper explores the challenge of confidentiality smokescreens from the perspective of professionals, and draws out implications for professional practice and training.

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

“…Carers are recognised as adding to the quality of care for older people as they bring a holistic knowledge of the person (sometimes over a life time) that positively contributes to care planning and maintaining the person's well-being (Gray et al, 2008;Milligan, 2006). In our study, carers highlighted the value of the relationship with the worker and the older person as well as the importance of social contacts for the older person.…”

“…Interviews highlighted that there was no overarching professional care coordinator that bridged all sectors (health, aged and social care) and subsequently carers found they were often the primary navigator across services. Commonwealth of Australia, 2009), mental health workers interpretation of confidentiality provisions has been found to create 'confidentialitysmokescreens' that limits information sharing (Gray et al, 2008).…”

“…This lack of information can result in carers feeling disempowered, angry, isolated, guilty and lonely (Gray et al, 2008), which subsequently impacts upon their ability to provide the required care. In the present study, even a few missed links in feedback left carers feeling 'bewildered'.…”

Double deprivation: a phenomenological study into the experience of being a carer during a mental health crisis

“…Jones (2004) further argues that relatives of someone with a severe mental illness experience complex emotions of guilt and loss. When not involved by professionals, carers describe feelings of anxiety, depression, isolation, fear, anger and resentment towards the person with mental health problems (Wooff et al 2003, Wynaden & Orb 2005, Gray et al 2008.…”

Editorial: an International Perspective on What Carers Want — the Professional’s dilemma

“…Rapaport (2006), in a large survey of service users, carers and professionals, found that each group had differing views about what information should be shared. Professionals hide behind what Gray et al (2008) have termed 'confi dentiality smokescreens' because of the unsolved moral and ethical dilemma of the service user's need for privacy and the carer's need for information. There is no clear guidance about information sharing despite policies and guidance about carers' rights and roles.…”