A choice of one's own research advance directives: Anticipatory planning for research subjects with fluctuating or prospective decisionmaking impairments

Mental disorders that may affect decisionmaking capacity, like schizophrenia, have a deleterious effect not only on persons who are afflicted with the disorders but also on their families, their friends, and their communities. Realizing research to develop generalizable knowledge that may benefit this heterogeneous population is crucial. The moral challenge is to fashion processes that both respect research subjects’ autonomy and protect their wellbeing. Research advance directives may provide a mechanism that authorizes potential research subjects to make choices of their own regarding whether they wish to participate in a research protocol, to choose and appoint a surrogate decision maker, and to secure an array of protections for themselves should they lose their decisionmaking capacity during the period of the research protocol. Such research advance directives may be used by persons with fluctuating, limited or prospective decisionmaking impairments.     

Accountability and academic freedom: The battle concerning research on cold fusion at Texas A&M university

abstract

The Massachusetts Task Force on Human Subject Research has so far been the only serious attempt to investigate radiation experiments on humans. No other federal, state or private agency has looked at a specific experiment in detail. The President's Advisory Committee on Human Radiation Experiments (ACHRE) provided an overview of the entire nationwide research project, but without a thorough evaluation of any single experiment. The Massachusetts Task Force examined a group of experiments using institutionalized children at two state facilities, the Fernald and Wrentham schools, from 1943 to 1973. The experiments were performed under supervision by scientists at Harvard and MIT, and were funded by several federal agencies. The Task Force found that these experiments were conducted according to the ethical and protocol standard of their day. This did not prevent the Task Force from judging that the experiments violated human rights, and recommending apology and compensation to the victims.     

Adult children of parents with mental illness: Family stigma and coping on sense of self

Family stigma is associated with persistent negative outcomes among adult children of parents with mental illness (ACOPMI). Loss of sense of self has been reported by ACOPMI; however, the role of family stigma on sense of self remains unclear. Additionally, research suggests coping behaviour (i.e. adaptive or maladaptive) influences the effect of stigmatization on sense of self. This study investigated the impact of family stigma and coping on sense of self among ACOPMI (N = 134, 63.4% female). As hypothesized, high family stigma was associated with weak sense of self (p < 0.001), and ACOPMI who endorsed adaptive coping demonstrated higher sense of self than those who coped maladaptively (p < 0.001). Further, coping moderated the relationship between family stigma and sense of self (p < 0.001). Unexpectedly, this relationship was only significant for ACOPMI with adaptive coping skills (p < 0.001). At higher levels of stigmatization, post hoc analysis revealed coping styles did not exert an influence on sense of self. Results suggest family stigma contributes to loss of sense of self among ACOPMI, with adaptive coping being protective only at lower levels of family stigma. Findings highlight the need for a systemic approach to eradicate family stigma.     

The protection of unrepresented patients in emergency care research

In emergency care research, it may be the case that neither informed consent nor surrogate consent is possible. In order to nonetheless allow for such research, codes and regulations of research ethics have increasingly incorporated provisions regarding this specific situation. The protection that those provisions offer need to be better understood. This article addresses in what ways they protect individuals, and especially the extent to which the suggested protection compensates for the loss of surrogate consent. The Declaration of Helsinki, the Additional Protocol to the Convention on Human Rights and Biomedicine, and the EU Clinical Trials Regulation serve as the main illustrations.     

Enriching our understanding of vulnerability through the experiences and perspectives of individuals living with mental illness

ABSTRACT

Vulnerability is a central concept in research ethics and typically serves to identify individuals or groups whose participation in research prompts specific concerns or warrants special consideration. While theoretical discussions on vulnerability have contributed valuable insights to discussions of mental health research and care, they have not been enriched thus far by stakeholder perspectives. This oversight has important consequences for the ways in which we frame vulnerability. It misses the far-reaching insights and experiential knowledge of mental health research participants whose experiences this ethics concept ultimately seeks to capture. In view of this gap, our study combines a pragmatist ethics framework and interpretive phenomenological analysis of qualitative interviews to explore user perspectives on the notion of vulnerability through the lived experiences of mental health research participants and patient-advocates. Importantly, these perspectives offer essential clues to address the difficulties of operationalizing concerns for vulnerability in concrete and practical ways. They help refine our understanding of this key ethics concept.     

Positive Connections: a programme for children who have a parent with a mental illness

Mental health professionals working with parents who suffer from a mental illness often overlook the children within the family. Children whose parents are mentally ill face numerous obstacles to their own emotional development and these children are at higher risk for developing mental illnesses than other children. These risks can be decreased if protective or positive interventions are available for the children. This article will describe the development and implementation of Positive Connections, an effective intervention programme specifically designed for children whose parents have been diagnosed with a mental disorder. The effectiveness of this programme has been evaluated using both qualitative and quantitative research strategies, and the results are presented.     

Parenting style,competence, social network and attachment in mothers with mental illness

Severe mental illnesses (SMIs) can affect parents' ability to provide an adequate environment for their children. Little has been written about the different factors that affect these abilities in individuals with SMI. In this study, we explored a number of relationships that have been found in the literature to be related to parenting styles. Our main hypotheses were that the participants' secure attachment with their parents is positively correlated with high levels of social support; social support is positively correlated with the experience of having good parental competency; lack of parental competency is negatively correlated with problematic parenting styles. This correlational and cross‐sectional study was conducted with 60 mothers with SMI. Results suggest a strong relationship between parental style, sense of parental competency, social support and attachment style of the parent. Negative parental styles were found to be negatively correlated with parental competence. Overactive and hostile parenting styles were found to be correlated with the interviewees' parental overprotecting attachment style. Positive correlations were found between parental competence and high social support. The results of the study may help in developing future multidimensional interventions for parents with SMI, to improve their parenting skills and reduce any negative influence on their offspring.     

Experiencing breast cancer in the context of mental illness in New Zealand

ABSTRACT

This study aimed to explore the experiences of women with mental illness who had also experienced breast cancer diagnosis and treatment, in particular, to identify barriers and facilitators to cancer treatment. Semi-structured interviews were conducted with ten breast cancer survivors who had had contact with secondary mental health services prior to their cancer diagnosis. Thematic analysis was used to identify key themes. Participants described positive experiences of cancer treatment, expressing surprise at both how well they coped with diagnosis and treatment and how well they were treated by services. Many contrasted this with their less positive experience of mental illness and mental health services. The women interviewed were active participants in their cancer treatment and did not report feeling stigmatised because of their mental health experiences. A lack of connection between cancer and mental health services was described, but this was not regarded as necessarily a bad thing. This study begins to counter the stereotypes of the difficult patient or the person unable to understand and cooperate in their own care which are prevalent in the literature. Further work is needed to understand the reasons for disparities in cancer outcomes.     

Growing up with a parent who has a chronic mental illness: one child's perspective

This paper describes a growing understanding of one adolescent boy's experience of living with a parent with a chronic mental illness. The way in which services were organized and delivered to address the needs of either adults or children made it difficult to comprehend the impact of parental psychiatric disorder on the family as a whole. The case study illustrates the problems for the 'not-noticed child', the process of internalization and enmeshment that affected his internal world, his relationships with others, and his development in adolescence. The need for all professionals to focus on interactive processes both within the family and in the professional network is emphasized, as is the importance of collaborative work.     

Hip Hop,empowerment, and clinical practice for homeless adults with severe mental illness

This article focuses on the use of a music and empowerment-based group as a vehicle for engagement, and therapeutic, and social-emotional benefits with homeless adults coping with severe mental illness in a shelter setting. The authors present a conceptual framework that includes case illustrations to capture the group process. The group was guided by the MUZUZE Hip Hop and empowerment framework, which is meant to facilitate well-being as evidenced by indicators of social-emotional learning and empowerment-based positive youth development. The authors found that the use of Hip Hop helped foster well-being via pathways of individual and community empowerment. Implications for future research and practice are discussed.     

‘Not a good person’: family stigma of mental illness from the perspectives of young siblings

The purpose of this paper is to critically examine family stigma as one form of the stigma of mental illness in child and youth mental health. Presented are the outcomes of a thematic content analysis of in‐depth, semi‐structured interviews conducted with seven (n = 7) young siblings, ages 13 to 21 years old, with a brother or sister identified as having a mental‐health issue. The focus of the interviews was on the ways the siblings experienced their other sibling's mental health and how those experiences shaped their sense of self and family. From the analysis, young siblings had predominately negative experiences, struggled with making sense of their brother or sister and the family as ‘flawed’ against the mental illness as ‘bad’ and experienced considerable family stress and overt family stigma. Current practice theories fail to consider the complexity of these factors and, in doing so, fail to adequately explain the nature and extent to which stigmatization occurs for immediate family members. The importance of peer support and understanding stigma in social work practice with children and their families is discussed.     

Current issues in clinical research and the development of new pharmaceuticals

As a normal part of the drug development process, U.S. pharmaceutical companies conduct many thousands of clinical trials each year. Only after a reasonable assurance of safety is made can the drug be given to patients who have the underlying medical condition that the drug is designed to treat. Patient welfare is assured by adhering to the Food and Drug Administration's interpretation of the “common rule”; if the data will be used to support a licensing application. 21 CFR Part 50 sets forth the regulations along with the principles of informed consent and the use of institutional review boards (IRBs) that assure patients’ rights are protected. Any potential conflict of interest on the part of a clinical investigator must be reported to the FDA. Pharmaceutical companies extensively monitor ongoing clinical trials for compliance with appropriate regulations. The recent revision of the Declaration of Helsinki governing placebo‐controlled clinical trials may adversely impact drug development     

Engaging the public in policy development: The national bioethics advisory commission report on research involving persons with mental disorders that may affect decisionmaking capacity

U.S. bioethics commissions have used a variety of methods to involve the public. All share a common requirement: as federal advisory committees they are required to comply with the Federal Advisory Committee Act, the federal law established during the Nixon administration which provides the public with an assurance that groups established by the government to advise the government should be publicly accountable. This paper will describe some of the ways the National Bioethics Advisory Commission (NBAC) sought to involve the public in its report on Research Involving Persons with Mental Disorders that May Affect Decisionmaking Capacity.     

Challenging the exclusion of people with mental illness: the Mental Health Housing and Accommodation Support Initiative (HASI)

Without appropriate support, people with mental illness can be excluded from stable housing and social and community participation. Transitional models of support for people with acute mental illness have addressed clinical symptoms and hospitalisation, but they have not facilitated stable housing and community integration. In contrast, individualised housing models aim to improve mental health, housing and community outcomes. These programs are costly and require collaboration between agencies. This article discusses the evaluation findings of one such program – the NSW Mental Health Housing and Accommodation Support Initiative (HASI). The longitudinal mixed‐method evaluation assessed whether HASI supported people with high levels of psychiatric disability to improve housing, mental health and community participation. We discuss the challenges clients within the program faced prior to joining HASI and the changes experienced while in HASI. We conclude by drawing policy implications for programs supporting people with mental illness to live in the community.     

Outcomes of the ON FIRE peer support programme for children and adolescents in families with mental health problems

Children in families with mental health problems may encounter multiple risks to their well‐being. General aims of peer support programmes for these children include fostering resilience and effective coping strategies, and enhancing self‐esteem and social skills. This study aimed to evaluate outcomes from a pilot multi‐site implementation of the ON FIRE peer support programme. The purpose of ON FIRE is to cultivate hope, resilience and well‐being in children and adolescents aged 8–17 years living in families affected by sibling or parental mental health problems. We employed a pre‐post test (baseline and 4 months) evaluation using a suite of outcome measures. The Strengths and Difficulties Questionnaire (SDQ), Children's Hope Scale, Kids Connections Scale and Positive and Negative Affect Scale for Children (PANAS‐C) were completed for 64 child/adolescent participants. At baseline, participants had significantly greater difficulties compared with Australian norms. At 4 months, there were significant differences in children's hope and in connections outside the family. There were no significant differences in the SDQ or the PANAS‐C.     

Changes in attitude towards people with mental illness in P-city,S. Korea: a comparison between the years 2000 and 2010

The objective of this study was to investigate changes in the attitudes towards people with mental illness in a city located in South Korea (P-city) between 2010 and 2000. Since it was not accessible to raw data of 2000, to compare with 2000 results, the results from the previous research article were used. Results from t-tests and ANCOVA analyses showed positive changes in P-city residents’ attitudes towards people with mental illness, particularly in authoritarianism and social restrictiveness. Discussion includes the role of a successful community mental health centre in bringing about such positive attitudinal changes.     

The well‐being of children of parents with a mental illness: the responsiveness of crisis mental health services in Wellington,New Zealand

Little is known about how mental health services consider the parenting role and the well‐being of children when assessing parents with acute mental illness. This paper investigated how crisis mental health services addressed child well‐being in the Wellington region, New Zealand. This mixed‐method case study included: (i) an audit of the electronic clinical records of all adults presenting to the crisis assessment team; (ii) interviews with 22 key informants; and (iii) a documentary review. We found that data about children were not systematically collected. Less than half of (49 of the 104) the records of patients who were parents included information on their child's well‐being; only six (6%) contained a specified plan for action. The focus for services was the adult patient. Key informants were unclear about their role. They identified inadequate training and institutional support, inflexible funding models and limited availability or inappropriateness of referral services as problems. They saw a need for children to become more visible, for collaborative working to improve the use of existing services and for new funding models, resources and roles. Existing national policy documents contained little guidance and no practice guidelines were in use. These were lost opportunities to improve support for the parenting role and promote child well‐being.     

Critical Components in Implementing Evidence‐based Practice: A Multiple Case Study of Individual Placement and Support for People with Psychiatric Disabilities

When developing Community Mental Health Services to support people with psychiatric disabilities, European countries are advocating evidence ‐based practice (EBP ). Individual Placement and Support (IPS ) is an evidence ‐based model designed to support people in acquiring and maintaining competitive employment. Implementation science is a growing research field, with a focus on components that impact the process of implementing EBP programmes. In this multiple case study, we have followed three IPS demonstration sites for two years, in order to describe and analyze barriers and facilitators for implementation, according to constructs described in the Consolidated Framework for Implementation Research (Damschroder et al. 2009 ). The results highlight the importance of strategic networking, as well as the need for planning and preparations carried out before the start of an EBP programme, since deficiencies related to these constructs are difficult to compensate for.