Carers and confidentiality in mental health care: considering the role of the carer's assessment: a study of service users', carers' and practitioners' views

Relatives or carers of people with mental health problems have criticised professionals for their failures to share information with them. This article reports on a multiple method study comprising a policy search, a survey of service users, carers and professionals, and stakeholder interviews and group events. The study found few policies that addressed the principles underpinning information sharing with carers. However, examples of good practice in professional involvement of carers that took account of carer rights and responsibilities emerged from the research. This suggests the relevance of the carer's assessment, a carer's right to an assessment of his or her circumstances and wishes in assisting understanding of the care context and enhancing appropriate information sharing between professionals and carers.     

Hidden Children: Perspectives of Professionals on Young Carers of People with Mental Health Problems

Young carers of people with mental health problems are highly hidden, ostracised and vulnerable. To make matters worse, many professionals from the social, health and education sectors are not fully aware of the difficulties and central issues facing young carers of people with mental health problems. In order to make young carers of people with mental health problems more visible and to explore gaps in need and good practice from the perspectives of professionals, 65 participants were interviewed. The sample included professionals from the social, healthcare and voluntary sectors. Respondents were asked to discuss their understanding of young carers and appropriate interventions and methods to address young carers’ needs. Findings highlight: young carers’ isolation, stigma and restricted opportunities; fears involving family separation and child protection; and examples of good professional practice. New findings and examples of good professional practice that provide holistic, sensitive and effective support include: young carer groups and forums; young carer days; raising awareness of young carers in schools, especially via technology such as DVDs and the Internet; and having key workers to befriend young carers so as to advocate for better care, to provide emotional and psychological support and to facilitate young carer involvement.     

A fine line to walk: case managers' perspectives on sharing information with families

In the United States, sharing information with families in health care involves competing demands between clients' rights to confidentiality and families' wishes to know. In this article, I explore how community mental health providers share information with families of clients with severe mental illness. I interviewed 24 case managers in assertive community treatment programs. Results show that case managers share information with families to attain treatment goals rather than to support families in providing care. Case managers respect clients' confidentiality and do not release information without client consent. However, the absence of client consent posts an ethical dilemma when families provide helpful information for clients' treatment. Case managers find themselves walking a fine line between adhering to confidentiality guidelines and working for the clients' best interests. The findings suggest the need to expand confidentiality laws to the exchange of information and to develop guidelines for working with families in community settings.     

The mental health of looked after children: matching response to need

Previous research has established high rates of mental health need in looked after children. The study described in this paper aimed to explore in more depth the mental health problems of looked after children and to examine the service response to those needs in two English local authorities. The study utilised a purposive sample of 80 looked after children which was biased towards those with high needs but which reflected the characteristics of looked after children in the two areas with regard to age, gender and type of placement. Key data on children and young people were collected from social services' case files and a set of indicators of mental health need was designed by the research team in order to distinguish different types and levels of mental health problems. High levels of mental health need in the study group were associated with placement disruption. Educational difficulties were also apparent in the group with the highest levels of mental health need. Longer-term input from child and adolescent mental health services (CAMHS) professionals did not appear to be targeted on the group with the highest level of mental health needs. The researchers conclude that longer-term CAMHS interventions could be usefully focused on looked after children who have experienced high levels of placement disruption. As the professional group most likely to be providing substantial intervention to looked after children and their carers, social workers require relevant training in identifying and responding to mental health needs. CAMHS professionals could develop and strengthen their consultative roles with front-line carers, social workers and schools.     

Privacy,confidentiality and HIV/AIDS health care

Abstract: Privacy and confidentiality are critical issues for people with HIV (human immunodeficiency virus) infection or AIDS (acquired immune deficiency syndrome). This paper reports on a series of 80 detailed interviews conducted in five cities in Australia and New Zealand, within a variety of organisations specialising in the provision of HIV testing and HIV/AIDS treatment services. The aim of the interviews was to survey current practices and procedures relating to the handling of HIV-related health information, and to sample on an informal basis the attitudes of health professionals and HIV-positive persons to specific privacy issues arising with respect to HIV/AIDS health care. The interviews revealed numerous practical issues, innovative procedures, and problems that are of direct relevance to the provision of HIV/AIDS health care services, and to medical practice generally. Despite the genuine commitment to privacy evidenced by most interviewees, the range of examples of careless and blatant breaches of confidentiality indicated by interviewees underscores the need for a concerted effort by those handling HIV information to adhere to legal and professional standards.     

Caregivers’ experiences of service transitions in adult mental health: An integrative qualitative synthesis

Approximately 5% of the UK population live with serious mental health problems. Data show that informal caregivers of people with mental illness provide care for the highest number of hours compared to other illness and the economic cost of this care is highest in the UK when compared internationally. People living with serious mental health problems make transitions between different intensities of service as their needs fluctuate, including referral, admission, transfer or discharge. Although caregiving is associated with both stress and positive reward, service transitions are particularly associated with increased stress. This review aimed to investigate what is known about the experiences of informal caregivers during mental health service transitions. An integrative qualitative synthesis was conducted following searches in six bibliographic databases and of the grey literature. Studies published in English between 2001 and 2017 were included if the study focus was on serious mental health problems, the experiences of caregivers and service transitions. Eleven studies were included, appraised using the Mixed Methods Appraisal Tool and synthesised, resulting in four themes: (a) Caregiver information, (b) Caregiver involvement in decisions about care and treatment, (c) Accessing services, (d) Being a caregiver. Caregivers’ experiences were similar during transitions to their usual caregiving role but they faced more challenges and their experiences were amplified. Concerns about confidentiality created barriers to information sharing. Continuity of professionals across transitions was helpful. Caregivers struggled to deal with their own conflicting emotions and with the behaviours of the person yet rarely received help. The review findings point to a need for continuity of professionals across service transitions, co‐designed and delivered training for professionals and caregivers about information sharing, greater understanding of barriers to implementation of family interventions and interventions that address emotional needs of caregivers.     

Dementia and ethics: the views of informal carers

There has been little work on the ethical issues facing non-professionals who care for relatives or others with dementia. A qualitative pilot study was conducted in ten such individuals, eight of them women, caring for persons drawn mainly from one general practice. The interviews indicated that many of the dilemmas faced by carers are ethical and that the issues differ from those faced by professionals. Ethical issues are sometimes the most troublesome matter for carers. Unlike issues for professionals, they arise from a personal context and are shaped by long-term relationships.     

Treading a tightrope: Professional perspectives on balancing the rights of patient's and relative's under the Mental Health Act in England

Involuntary detention is used internationally to detain and treat people who are deemed to have a mental disorder. In England and Wales, approved mental health professionals (AMHPs) co‐ordinate Mental Health Act assessments which allow for patients to be detained. AMHPs have legal duties to identify, inform and consult with a patient's nearest relative (NR), who are, in turn, given powers to initiate or challenge detention. Our study takes an original approach through examining how AMHPs interpret their duties towards nearest relatives. We adopted a two‐stage design, which involved an online questionnaire with 55 AMHPs and focus group discussions with 33 AMHPs. The research was conducted in England between 2017 and 2018. Our questionnaire found that a high proportion of AMHPs reported that they had spoken to NRs for background information when assessing patients under the Mental Health Act. However, AMHPs were less likely to ask patients about their views of involving the NR prior to assessment. Focus group findings showed that AMHPs saw the NR role as offering an important ‘safeguard’ on the basis that NRs could provide information about the patient and advocate on their behalf. AMHPs identified practical difficulties in balancing their legal obligation towards NRs and patients; particularly where issues of potential abuse were raised or where patients had identified that they did not want NR involvement. While AMHPs stated that they sought to prioritise patient wishes regarding confidentiality, their accounts identified that patient consent about information sharing was sometimes implied rather than sought explicitly. Our findings reinforce conclusions by the recent Independent Review of the MHA, which states that current NR provisions are ‘outdated, variable and insufficient’. We identify that current practice could be improved using advanced choice documents and outline implications for AMHP practice.     

A Social Work Practice Reflection on Issues Arising for LGBTI Older People Interfacing With Health and Residential Care: Rights,Decision Making and End-of-Life Care

This article is a social work practice reflection on issues arising for lesbian, gay, bisexual, transgender, and intersex (LGBTI) older people interfacing with health and residential care in Australia; focusing on clients, families, and carers in relation to rights, decision making, and end-of-life care. The article explores relevant case examples from social work practice in a health and residential care setting that highlight some specific complexities of working with this client group. This article brings greater attention to issues arising for older LBGTI when interfacing with health and residential care and has the potential to improve practice for social workers and other health professionals and improve outcomes for LGBTI older people.     

Maintaining the confidentiality of computerized mental health outcome data

The emergence of managed behavioral health care has increased the value of data describing outcomes of mental health treatment. At the same time, increased development of the national information infrastructure and other computer linkage systems has facilitated the flow of information among a wide network of data systems. These two developments create a dynamic tension between the need to share information and the need to protect the privacy of mental health clients and the confidentiality of their computerized records. This problem is exacerbated by the cost associated with potential solutions. Unfortunately, policy development in this area has lagged behind rapid developemnts in technology. The mental health administrator must balance the three components of this conflict (the increasing need for information transfer, the protection of confidentiality, and cost) without a great deal of guidance. This article offers recommendations that may help the mental health administrator manage this conflict.     

Pediatric AIDS: The professional responsibilities of child caregivers to children and families

Information about the nature and control of AIDS is now available to the general public. Policies regarding the physical care of AIDS victims are also available to health care professionals. Unfortunately, information about professional issues like acceptance of AIDS victims, confidentiality, and family support is less available. One audience in particular need of such information is child caregivers who, in the years ahead, can expect to see an increasing number of children who are infected with the HIV virus. In this paper, the author addresses the professional responsibilities of child caregivers who care for children with AIDS or HIV infection.     

An evaluation of mental health service provision in Northern Ireland

Although Northern Ireland has high levels of mental health problems, there has been a relative lack of systematic research on mental health services that can provide an evidence base for legal, policy, and service developments. This article aims to provide a review of the central issues relating to mental health service provision in Northern Ireland, and to gather the perceptions of different stakeholders of these services. The study utilised in‐depth qualitative interviews, focus groups, and an online survey to collect data from respondents throughout the region. This method involved the completion of semistructured interviews with significant mental health commissioners and senior managers, and with service‐users and their key workers. Focus groups sessions were also completed with mental health professionals, service‐users, and carers. Data collection occurred between December 2014 and June 2015. Thematic analysis was used to identify key issues. The findings identified that considerable progress had been made not only in the development of mental health services in the last decade, but also highlighted the significant limitations in current services. Most notably, strengths in provision included the transition from long‐stay hospital care to community‐based services and person‐centred approaches. The researchers identified the need to improve funding, address problems with fragmentation, and gaps in service provision. Based on these findings, the authors consider the implications for practice and policy relating to the human and organisational aspects of service development. In particular, services should be developed focusing on a recovery ethos and on person‐centred and relationship‐based approaches. The needs of carers should additionally be considered and programmes developed to tackle stigma.     

Attitudes towards the rights of mental patients : A national survey in the United States

Recent changes in mental health policy and treatment have largely been attributed to a professional concern for patients' rights. This view is challenged by patients' rights organizations and their allies, such as legal advocacy groups. These parties argue that psychiatric planners and providers are trying to coopt a popular movement and to use patients' rights as a convenient explanation for the mental health system's limited self-reform and fiscal limitations. A key issue here is the gap between planned policy and implemented practice. Patients' rights activists maintain that rights are only very sparsely implemented, while the mental health system believes that it has progressed quite far. A study of patients' rights attitudes held by the various involved forces can illuminate the conflicts in patients' rights policy and provide understanding of the potential for resolving these conflicts. Such an analysis also touches on some general themes concerning the relationships between health providers and social movements in the health field. This paper examines attitudes towards mental patients' rights on the part of mental patients rights groups, state departments of mental health, state hospitals and statewide mental health associations. One hypothesis was borne out: that patients' rights groups do not believe as much as does the mental health establishment that concern for patients' rights has played a large role in mental health policy. Further, the activist groups are more favorable than are the other respondents to abolition or sharp curtailment of intrusive psychiatric treatments. And, mental health officials and their lay supporters are less prone to accept patients' rights groups' initiative in reform efforts. The second main hypothesis, that the mental health establishment would be more antagonistic to patients' rights in states where patients rights groups existed, was not supported. One possible explanation for this is that patients' rights groups have had a nationwide impact, and that mental health officials face common problems throughout the country. Alternatively, or in conjunction, an antecedent variable of political liberalism may operate in some states, creating both activist groups and more liberal psychiatric professionals. The significance of these findings is discussed and suggestions are offered for future research in this area.     

Introducing an electronic Palliative Care Summary (ePCS) in Scotland: patient, carer and professional perspectives

Background An electronic Palliative Care Summary (ePCS) is currently being implemented throughout Scotland to provide out-of-hours (OOH) staff with up-to-date summaries of medical history, patient understanding and wishes, medications and decisions regarding treatment of patients requiring palliative care: automatic twice daily updates of information from GP records to a central electronic repository are available to OOH services. Aims To identify key issues related to the introduction of ePCS from primary care and OOH staff, to identify facilitators and barriers to their use, to explore the experiences of patients and carers and to make recommendations for improvements. Methods Twenty-two semi-structured interviews were carried out with a purposive sample of health professionals [practice nurses (3 interviews), GPs (12 interviews), a practice manager (1 interview) from practices using different computing software systems] and patients and/or carers (6 interviews for whom an ePCS had been completed). Interviews were digitally recorded, transcribed and analysed thematically. Results Patients and carers were reassured that OOH staff were informed about their current circumstances. OOH staff considered the ePCS allowed them to be better informed in decision making and in carrying out home visits. GPs viewed the introduction of ePCSs to have benefits for in-hours structures of care including advance care planning. No interviewee expressed concern about confidentiality. Barriers raised related to the introduction of new technology including unfamiliarity with the process, limited time and information technology skills. Conclusions The ePCS has clear potential to improve patient care although several implementation issues and technical problems require to be addressed first to enable this. GPs and community nurses should identify more patients with malignant and non-malignant illnesses for completion of the ePCS.     

Meeting the health information needs of health workers: what have we learned?

The information challenges facing health workers worldwide include lack of routine systems for seeking and sharing information, lack of high-quality and current health information, and lack of locally relevant materials and tools. This issue of Journal of Health Communication presents three studies of health information needs in India, Senegal, and Malawi that demonstrate these information challenges, provide additional insight, and describe innovative strategies to improve knowledge and information sharing. Results confirm that health workers' information needs differ on the basis of the level of the health system in which a health worker is located, regardless of country or cultural context. Data also reveal that communication channels tailored to health workers' needs and preferences are vital for improving information access and knowledge sharing. Meetings remain the way that most health workers communicate with each other, although technical working groups, professional associations, and networks also play strong roles in information and knowledge sharing. Study findings also confirm health workers' need for up-to-date, simple information in formats useful for policy development, program management, and service delivery. It is important to note that data demonstrate a persistent need for a variety of information types--from research syntheses, to job aids, to case studies--and suggest the need to invest in multifaceted knowledge management systems and approaches that take advantage of expanding technology, especially mobile phones; support existing professional and social networks; and are tailored to the varying needs of health professionals across health systems. These common lessons can be universally applied to expand health workers' access to reliable, practical, evidence-based information.     

Primary health care and general practice--a comparison between Australia and Malaysia

The Australian and Malaysian systems of general practice were examined and compared. The issues of similarity and difference identified are discussed in this paper. Quality clinical practice and the importance of compulsory vocational training prior to entry into general practice and continuing professional development is one important area. A move towards preventive health care and chronic disease management was observed in both countries. Practice incentive programmes to support such initiatives as improved rates of immunisation and cervical smear testing and the implementation of information technology and information management systems need careful implementation. The Medicare system used in Australia may not be appropriate for general practitioners in Malaysia and, if used, a pharmaceutical benefit scheme would also need to be established. In both countries the corporatisation of medical practice is causing concern for the medical profession. Rural and aboriginal health issues remain important in both countries. Graduate medical student entry is an attractive option but workforce requirements mean that medical education will need individual tailoring for each country. Incorporating nurses into primary health care may provide benefits such as cost savings. The integration model of community centres in Malaysia involving doctors, nurses and allied health professionals, such as physiotherapists, in a single location deserves further examination.     

A qualitative study of the experience of caring for a person with bulimia nervosa. Part 2: Carers' needs and experiences of services and other support

OBJECTIVE: Family carers of people with mental disorders have specific needs to safeguard their own mental health. The needs of carers of individuals with eating disorders have received little attention. A focus group with carers of people with anorexia nervosa identified a number of specific needs (Haigh & Treasure [2003]. European Eating Disorders Review, 11(2), 125-141). However, there has been no published research into the needs of carers of individuals with bulimia nervosa (BN). METHOD: Twenty carers of individuals with BN were interviewed using a semistructured interview schedule. Interviews were transcribed and the texts were analyzed using a content analysis approach to identify themes. RESULTS: Carers expressed the need for more information, practical advice, guidance, and the need to talk to others about their experiences. DISCUSSION: Further research is recommended to explore how the needs expressed by carers may best be translated into services that effectively meet the requirements of both patients and carers and reduce the risk to carers' mental health.     

Supporting carers: is practice still sexist?

Informal carers are central to the community care policies which have emerged during the last two decades. However, research has suggested that caring is a gendered activity, disproportionately expected of women with consequent disadvantage in terms of physical and mental health and material well-being. Moreover, evidence has been presented that, in the past, women carers were less likely to be offered the support of public services than their male counterparts. A research project designed to test whether this pattern still applied in service provision to male and female spousal carers was carried out in an assessment and care management team working with older people. The results suggested that differences in professional responses to female and male carers still persist and that some workers may be unaware of the gap between their intentions and their actions in assessing and planning services. This evidence implies the need for further attention to be paid to these issues in training care managers and the importance of monitoring the outcomes of assessment along gender lines.     

Rights and respect. Legal and ethical issues challenge today's mental healthcare professionals

The special circumstances of patients in mental health facilities often make questions concerning patient autonomy, freedom of choice, and consent to treatment even more complex than they are in other contexts. Individual facilities need to identify the ethical issues they are likely to encounter and create policies that address them effectively. The advent of managed care has created unprecedented access problems for mental healthcare providers. In many cases patients must be proven dangerous to themselves or others before they can be admitted for emergency care; because it is difficult to prove this, many persons go without needed treatment. The high costs of care and prejudices against persons with mental illness also create ethical problems. The necessity of performing clinical evaluations raises important ethical issues as well. Care givers evaluating someone at the request of a school, employer, or court should be sensitive to the possible consequences of their evaluation. They should also restrict their diagnoses to their area of competency and inform clients of the purpose of the evaluation, its possible consequences, and the limits of its confidentiality. Mental health professionals must also respect patients' rights to informed consent and understand the issues of voluntary or involuntary admissions. In addition, care givers should be aware of the various issues created by the need to occasionally control patients' behavior. Finally, for mental healthcare facilities, it is essential to establish an ethics committee to address these issues.