The ethics of conducting a co-operative inquiry with vulnerable people

BACKGROUND: Mental health services users have been calling for greater participation in clinical research. Participation in this context means research 'with' rather than 'on' groups of people. Conducting a co-operative inquiry involving the participation of vulnerable individuals as co-researchers, in particular those with a history of mental health problems, places an obligation on researchers to articulate and justify sound ethical procedures. AIMS: The aim of this paper is to consider how the ethical issues encountered when conducting participative research with vulnerable people can be addressed in the implementation of a co-operative inquiry with users of mental health services. METHOD: The study was based on personal reflection and a critical review of associated literature obtained from a database search using Boolean logic. FINDINGS: The findings, presented under the headings of the four prima facie moral principles, suggest the need for researchers using participative approaches to demonstrate the humanistic attributes required for engaging and working with people over a period of time. These include building and maintaining trusting relationships, assessing competence to participate, managing interpersonal and group dynamics and making complex collaborative decisions about participants' continued participation in a study. CONCLUSIONS: When using a co-operative inquiry approach involving vulnerable individuals, researchers need to demonstrate clearly how a balance between autonomy and paternalism will be achieved, how risks will be anticipated and managed and how fairness will be maintained throughout all procedures. Researchers using participative approaches need to have developed a level of personal insight and self-awareness through access to supervision which focuses on sources of unintended manipulation and interpersonal dynamics that may arise at the inception of a study and throughout its course. Researchers and ethics committees have a shared responsibility to ensure that vulnerable people are appropriately engaged to maintain the advancement of user knowledge which informs nursing practice.     

Sexual abuse and mental handicap: preliminary findings of a community-based study

In recent years sexual abuse has been acknowledged by society at large to be a significant problem. However, very little has been written about sexual abuse of people with mental handicaps. This paper documents the findings of a three-year study of 13 victims of sexual abuse each of whom had a mental handicap. Parallels are drawn with research knowledge of sexual abuse and its effects on “normal” victims. Any differences which emerged are noted. The major finding of this study is the possibility that behaviour problems and “acting out” behaviour of people with mental handicaps may be significant indicators of sexual abuse having taken place, in people who do not have the verbal skills to say to others what has happened to them. New areas of research are indicated to compare with this data.     

Programmatic research. A desirable (or despotic?) nursing strategy for the future

Programmatic research is a planned and purposeful strategy in the development of a nursing discipline. We discuss the case made for programmatic research by international scholars as a determinant of scholarship and professional advancement, as well as issues about whether it should be knowledge or methods driven. As an example, the development of a clinical program involving the establishment of 'nursing beds' in the United Kingdom is described, together with a published critique of the program. While the literature portrays an overwhelmingly positive outlook for programmatic research, there are some cautionary tales to be told. We address these by way of the literature and personal experience--especially relating to tensions created by fixed research agendas, inability of researchers to follow their own research interests and funding difficulties. Potential disadvantages of programmatic research are also included. We conclude with suggestions as to how research students, early career researchers, and experienced researchers might become involved with programmatic research in positive ways.     

The context, measures and outcomes of psychosocial care interventions in long-term health care for older people

This paper examines the psychosocial dimensions of long-term care with reference to the new International Classification of Functioning, Disability and Handicap (ICIDH 2) and to research conducted in Hong Kong. It also draws on selected international literature about older people. It discusses the different ways in which information can be gained about the personal, social and emotional processes of rehabilitation that influence outcomes and raises methodological questions about the study of interventions. Outcomes that are sensitive to psychosocial interventions and that take account of the elderly person's own perspective are identified as important challenges for nurses and other professionals in the multidisciplinary team, in order to respond to an individualized approach to long-term care. It is concluded that gaining a better understanding of the psychosocial dimensions of long-term care will enhance professional practice and benefit older people and their carers.     

Action research from the inside: issues and challenges in doing action research in your own hospital

BACKGROUND AND RATIONALE: Nurses are increasingly engaging in action research projects to improve aspects of nursing practice, education and management and contribute to the development of the profession. Action research involves opportunistic planned interventions in real time situations and a study of those interventions as they occur, which in turn informs further interventions. Insider action research has its own dynamics which distinguish it from an external action researcher approach. The nurse-researchers are normally already immersed in the organization and have a pre-understanding from being an actor in the processes being studied. There is a paucity of literature on the challenges that face nurse action researchers on doing action research in their own hospital. AIM: The aim of this article is to address this paucity by exploring the nature of the challenges which face nurse action researchers. Challenges facing such nurse-researchers are that they frequently need to combine their action research role with their regular organizational roles and this role duality can create the potential for role ambiguity and conflict. They need to manage the political dynamics which involve balancing the hospital's formal justification of what it wants in the project with their own tactical personal justification for the project. MAIN ISSUES: Nurse-researchers' pre-understanding, organizational role and ability to manage hospital politics play an important role in the political process of framing and selecting their action research project. In order that the action research project contribute to the organization's learning, nurse action researchers engages in interlevel processes engaging individuals, teams, the interdepartmental group and the organization in processes of learning and change. CONCLUSIONS: Consideration of these challenges enables nurse-action researchers to grasp the opportunities such research projects afford for personal learning, organizational learning and contribution to knowledge.     

Respite care for caregivers and people with severe mental illness: literature review

AIM: The aim of this study was to review research literature over the past 10 years on respite care for people affected by severe mental illness; and identify key implications for nursing practice in provision of respite care for family caregivers of people with severe mental illness. BACKGROUND: Family caregivers play an important role in health care, but need regular breaks to maintain their own health and well-being. Respite care is one of the few services available with a primary focus on supporting family caregivers. In most developed countries the notion of respite care as an extension of the health care service has been embraced, evidenced by a growing body of literature in health and health-related disciplines. METHODS: An initial literature search was undertaken using the key words "respite", "short-term care", "shared care" and "day care" in major electronic databases for nursing, psychiatry, psychology and sociology literature between 1967 and 2002, identifying 704 articles. Closer examination of the literature from 1993 to 2002 on gaps and trends in respite care for people affected by severe mental illness was conducted. This is discussed in the context of the broader literature, particularly on dementia, where the mainstream research on respite care is found. RESULTS: The majority of family caregiving studies identified a need for greater quality, quantity, variety and flexibility in respite provision, and the literature has remained largely silent in relation to those affected by severe mental illness. There are contradictory findings on outcomes of respite care services and a lack of controlled empirical studies and evaluative research on effectiveness. CONCLUSIONS: Respite care is beneficial for caregivers, there is significant unmet need in provision of services for the mentally ill, and greater flexibility and the needs of caregivers should be recognised and addressed.     

Employers' attitudes to the employment of people with mental handicaps: an empirical study

Supported employment services for people with mental handicaps are being developed in many parts of the country. These aim to provide them with the levels of job-finding assistance, training, and support required to enter and remain in employment. Finding jobs is crucial to the success of these ventures. This study examines the problem of marketing the labour of people with mental handicaps to employers. The research is based on interviews with 57 employers in Sheffield. It investigates the attitudes, perceptions, and practices of employers in relation to the employment of people with mental handicaps. The findings show that the label “mental handicap” is not always understood accurately by employers. It often communicates negative images. Several concepts were found to underlie employers' perceptions of their employees. People with mental handicaps were expected to perform better than their non-handicapped counterparts on four of these: job satisfaction, genuineness, grafting, and loyalty; but less well on productive capacity, supervision and risk, and learning capacity. The results indicate that small organisations with a low rate of recruitment are the most sympathetic employer groups. The survey also showed that problems envisaged by employers with no experience of employing people with mental handicaps were not reported by those experienced in doing so, especially with respect to safety and co-worker acceptance. The findings will be used to develop a more effective marketing strategy for the supported employment services organisation, Intowork, which is based in Sheffield.     

Listening to young voices: challenges of research with adolescent mental health service users

Young people who have mental health problems and use the mental health services need to be consulted about their views regarding their experiences of care and treatment in the same way as adults do. Doing research with children and young people is relatively new but it is becoming more common and recent literature highlights a need to balance respect for their voices with responsibility for their best interests. This can be achieved by paying close attention to ethical and methodological issues throughout the course of every study. This paper reviews some of the issues involved in consultation research with adolescent mental health service users, and illustrates them with examples taken from an ongoing study into the experiences of young people in three Scottish child and adolescent mental health services.     

Missed opportunities in the field: caring for clients with co-morbidity problems

This discussion paper presents key issues associated with caring for people with concurrent alcohol or drug and mental health problems. By way of anecdotal stories and personal experiences, it draws attention to 'missed opportunities' for effective care of clients within a general hospital and community mental health service. As educators, inicians and students, we are concerned our own attempts to improve the care of these clients may have been less than successful due to various factors, and believe such information is important to share with the wider nursing profession. We hope the paper will stimulate interest amongst general, mental health and drug and alcohol nurses, and researchers and educators to better address the issue of alcohol, drug and mental health co-morbidity in our community.     

Mental Health Researchers’ Views About Service User Research: A Literature Review

Services users are becoming actively involved in mental health research. How this is perceived by other researchers is not well known. The aim of this article is to review the international literature exploring other mental health researchers’ views of service users conducting research, between 1996 and 2016. Searches of multiple databases (PubMed, PsycINFO, CINAHL, and Google Scholar) were undertaken. Combinations of terms related to service user research and mental health researcher perspectives, views, and attitudes were used. Manual inquiry of reference lists was also undertaken. Relevant papers were coded by topic, location, study design, and other dimensions. Five articles met inclusion criteria. Most referred to perceived benefits, such as greater validity of research findings, challenges of collaborating with service users, and the validity of research findings. There was some evidence of more openness to mental health service users providing suggestions, preferably in early stages of the research process. Reluctance to co-research with service users was reported. There is limited research directly addressing other mental health researchers’ views about service user research; barriers to inclusion (whether involvement, co-production or user-controlled) and creating incongruence with health policy statements. Further research to more fully understand these attitudes and how they might be influenced is warranted.     

Risky business: Lived experience mental health practice,nurses as potential allies

Mental health policy includes a clear expectation that consumers will participate in all aspects of the design and delivery of mental health services. This edict has led to employment roles for people with lived experience of significant mental health challenges and service use. Despite the proliferation of these roles, research into factors impacting their success or otherwise is limited. This paper presents findings from a grounded theory study investigating the experiences of Lived Experience Practitioners in the context of their employment. In‐depth interviews were conducted with 13 Lived Experience Practitioners. Risk was identified as a core category, and included sub‐categories: vulnerability, ‘out and proud’, fear to disclose, and self‐care. Essentially participants described the unique vulnerabilities of their mental health challenges being known, and while there were many positives about disclosing there was also apprehension about personal information being so publically known. Self‐care techniques were important mediators against these identified risks. The success of lived experience roles requires support and nurses can play an important role, given the size of the nursing workforce in mental health, the close relationships nurses enjoy with consumers and the contribution they have made to the development of lived experience roles within academia.     

The role of “carers” of people with mental handicaps: an observational study across contexts

An observational study of the work activities of professional carers of people with mental handicaps is reported. Work profiles across four contexts are compared: a hospital ward, a rehabilitation hospital ward, a social work hostel, and a commmunity mental handicap nursing unit. Somewhat different rehabilitative services were offered to comparable client groups across the four care contexts. Anticipated differences between the work profiles of hospital and community carers were less evident than expected. Significant differences, across contexts, were found in the amount of staff involvement in clients' personal care, housekeeping, clothing management, and leisure time. Important differences between the role of community mental handicap nurses and hospital-based nurses were observed, especially in relation to consultation with relatives and escorted transport. The study also revealed that work profiles across units were similar, to the extent that very little staff time appeared to be devoted to supervision and teaching activities. Socialisation with clients was uniformly high across contexts. Interpretations of these observations, and implications for the training of care staff concerned with the rehabilitation of people with mental handicaps, are discussed.     

The effects of deinstitutionalisation on people with mental handicaps: A REVIEW

The deinstitutionalisation of people with mental handicaps has given rise to a considerable literature regarding the effects of this policy on service users. This review describes the major findings in relation to changes in adaptive behaviour, activity levels, social interaction, community integration, disruptive behaviour, and quality of life. Individual and environmental influences are discussed, together with possible foci for future research.     

Powerlessness,marginalized identity,and silencing of health concerns: Voiced realities of women living with a mental health diagnosis

Using a feminist qualitative approach, this study substantiated many earlier research findings that document how women with a mental health diagnosis experience unequal access to comprehensive health care compared to the general population. Accounts of this disparity are documented in the literature, yet the literature has failed to record or attend to the voices of those living with mental health challenges. In this paper, women living with a mental health diagnosis describe their experiences as they interface with the health‐care system. The participating women's stories clearly relate the organizational and interpersonal challenges commonly faced when they seek health‐care services. The stories include experiences of marginalized identity, powerlessness, and silencing of voiced health concerns. The women tell of encountered gaps in access to health care and incomplete health assessment, screening, and treatment. It becomes clear that personal and societal stigmatization related to the mental health diagnosis plays a significant role in these isolating and unsatisfactory experiences. Lastly, the women offer beginning ideas for change by suggesting starting points to eliminate the institutional and interpersonal obstacles or barriers to their wellness. The concerns raised demand attention, reconsideration, and change by those in the health‐care system responsible for policy and practice.     

Partnership research with older people – moving towards making the rhetoric a reality

As nursing develops closer partnerships with older people in delivering care, it also needs to develop partnerships in order to create the knowledge base for practice in a way that challenges professional hegemony and empowers older people. However, the process of developing partnerships in research takes place against a background of academic research traditions and norms, which can present obstacles to collaboration. This paper is a reflection on the issues that have arisen in three projects where older people were involved in research at different levels, from sources of data to independent researchers. It points to some of the areas that need further exploration and development.     

Behavioural treatment of anxiety and related disorders in adults with mental handicaps: A REVIEW

This paper comprehensively reviews studies relating to the prevalence, assessment, and behavioural treatment of anxiety and related disorders in adults with mental handicaps. It is considered that the paucity of research in this area, relative to work with adults who are not mentally handicapped, is an example of neglect by mainstream psychology rather than a belief that people with mental handicaps do not often experience such disorders. The lack of assessment measures is noted and discussed in the context of studies of treatment outcome. Such studies are sparse and generally poorly designed, although most indicate the potential benefit of behavioural interventions. Future areas of research are discussed and their necessity is outlined in the context of the principles of normalisation.     

Backs to the future? Reflections on women,ageing and nursing

There is now a certain amount of evidence to support the contention that ageism is not only rife amongst the population at large, but also amongst many of those who care for older people in a professional capacity. Given that many of these professionals are women caring for other women — and nursing is a prime example — this should at the very least give us serious cause for concern. This paper explores the relationship between 'ageing women' and 'old women' from the point of view of personal and professional attitudes and practices. It examines the proposition that until we, as women, fully explore and understand our own attitudes towards ageing and old age, we cannot work in ways which are truly beneficial and empowering for the older women in our care. The purpose of the paper is threefold. First, it reviews what is a relatively limited body of literature and research on this topic. Second, it reports on the preliminary findings from an exploratory study examining the attitudes of female nurses to their own ageing. Finally, it reflects further on the issues raised and considers some of the ways in which we can begin to address and confront the challenges which being 'ageing women' and 'aged women' in late 20th century Britain presents.     

Primary care nurses' attitudes, beliefs and own body size in relation to obesity management

AIM: This paper is a report of a study to explore primary care nurses' attitudes, beliefs and perceptions of own body size in relation to giving advice about obesity. BACKGROUND: Primary care nurses have a key role in the management of obesity. Their responses to the stigma of obesity and the effects of their own body size in this context have not been investigated. METHODS: A purposive sample of 15 primary care nurses of markedly different body size were interviewed in a qualitative study undertaken in 2006 in the north of England. FINDINGS: Participants were aware of obesity stigma and this, among other factors, contributed to perceptions of obesity as being a sensitive issue to discuss. Communication tactics were employed in managing the sensitivity, with emphasis placed on maintaining good rapport. Participants took care to avoid stereotypes in presenting their beliefs about obesity, which were complex and in some respects ambivalent. They were conscious of their own body size in interactions with patients. A slim build appeared to amplify sensitivities surrounding obesity and add concerns about appearing to lack empathy or authentic experience. Those with a large body size made a virtue of their perceived greater empathy and experience, but had concerns about being poor role models. Self-disclosure techniques oriented to demonstrating personal understanding and rapport were employed to manage impressions made by body size. CONCLUSION: It is important to consider the effects of own body size in educating nurses, and further research should investigate its effects on patient outcomes.