Accountability in research using persons with mental illness

Although medical research involving the use of persons with mental illness is critically important, in order for the research to be ethical and legal there are certain considerations and restrictions which should be immediately readdressed in order to insure that the welfare of these vulnerable research subjects is protected, and their best interests are assured. A brief historical examination of medical research codes, guidelines, recommendations and Federal Regulations reveals the various considerations and restrictions on informed consent and accountability applicable to the use of persons with mental illness in medical research. Several concerns are raised about how these considerations and restrictions have been interpreted, and specific recommendations are offered to improve them immediately by means of representation from consumers and/or their families, and organizations, e.g., NAMI members.     

Aging with a severe mental illness: challenges and treatments

Severe mental illness (SMI) impacts many different facets of individuals' lives. As they age, those with SMI experience increased physical illnesses, functional impairment, cognitive deficits, and social disability. To promote more effective social work practice with this population, this article highlights the major biopsychosocial and family issues of aging with a psychiatric diagnosis. In addition, intervention approaches that have demonstrated efficacy are summarized along with ways to coordinate services across multiple service delivery sectors. Finally, future directions in practice and research are presented to develop additional methods of support for older adults with SMI and their families.     

Adult children of parents with mental illness: navigating stigma

The experiences of children who live with parental mental illness are becoming increasingly recognized. However, there remains a limited body of knowledge in relation to an individual's longer term experiences. This study sought adult children's experiences of childhood parental mental illness. It generated reflections of 13 adult children who had lived with parents with mental illness during their childhood. The narrative design of the study facilitated a voice for participants. The paper presents one main theme of the findings. The findings offer a unique insight into childhood awareness of social stigmas and children's behavioural changes to avoid disclosure of parental mental illness. Participants noted that they were aware of social stigmas associated with mental illness during their childhood. This contributed to their fear of disclosure to others that fuelled a culture of familial secrecy, reinforcing the children's own sense of difference. Further work is required to enhance community understanding about the familial journeys of parental mental illness and the impact of negative‐natured stigmas.     

Western Christianity's two historical treatments of people with disabilities or mental illness

Christianity had two traditions of interpreting people with disabilities. The older tradition viewed disability as the result of sin. This tradition punished, separated, and restricted people with disabilities. It barred them from full participation in the Church and its rituals. However, as Christianity developed, a second tradition emerged that saw people with disabilities as needing compassion and that God accepted everyone. The second tradition saw people with disabilities as representing opportunities for the faithful to do charitable works. Christianity led the movement to provide assistance to people with disabilities until government later began to supplant its efforts.     

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.     

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.     

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.     

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.     

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.     

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.     

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.     

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 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.