Ethical challenges in international HIV prevention research

Members of an HIV-prevention research network were asked to describe ethical challenges faced in their work. Major themes included acceptable standards of care for participants, defining research of relevance to host countries, reducing risks related to stigma, designing research that meets local needs without contributing to an inadequate status quo, and ensuring informed consent for complex research with potentially vulnerable participants. The challenges are interrelated and highlight the need for innovative, practical strategies to be incorporated into the planning, design, and conduct of HIV prevention trials. Research in applied ethics to support decision-making about HIV prevention research is needed, along with ethics training, mechanisms to support community-wide benefit from research, and expanded dialog on ethics surrounding HIV prevention and public health research.     

‘You Get More Respect,’ Reasons for Sex Among African American High School Youth: A Qualitative Study

ABSTRACT

African American adolescents continue to be disproportionately impacted by HIV, sexually transmitted infections (STIs), and unanticipated pregnancies. In-depth, face-to-face interviews among a convenience sample of 32 African American adolescents (16 male and 16 female) were used to explore the reasons why some adolescents decided to engage in sex while others chose to delay sexual debut. Data were analyzed using a thematic analysis. Among the overall sample, psychological motivations, external pressure, physical pleasure seeking, and relationship-related motivations were the major themes cited for engaging in sex by participants and their friends. External support, motivation to avoid negative consequences, not feeling ready or lacking interest in sex, and having negative views about sex were among the major reasons for delaying sex. Several of the emergent themes showed gender differences. Suggestions for future research include the need for sexual education, and STI/HIV prevention programs that are gender sensitive and flexible enough to accommodate multiple factors related to sexual debut.     

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.     

More Nuanced Universal Services for New Parents: Avoiding Assumptions of Homogeneity

Abstract

Universal services focus on prevention and providing the support to parents that will help them meet the challenges of parenthood and deal with problems before they become entrenched. Many countries now have good universal services available for new families, and significant advances have been made in recent years to recognize the importance of the early years in the optimal development of the child. This article is based on a qualitative study of transition to parenthood. The study explored the experience of 25 first-time mothers in socioeconomically diverse circumstances in New Zealand. Eleven partners of these women also participated. Mothers were interviewed three times, first in late pregnancy, then 3 and 12?months after giving birth. Partners were interviewed once, mid-way through the baby’s first year. The article focuses on how participants experienced service support. It illustrates some of the diverse needs of new parents, and explains ways in which prevention services might become more responsive to parents’ expressed needs. The authors offer a case for stronger interplay between universal services and informal systems of support, and the development of a new generation of universal services that act as enablers of natural support hubs for new families within their own communities.     

Ethical guidelines for research with children: A review of current research ethics documentation in New Zealand

Abstract

Children's rights to participate in matters affecting them, including research, have gained increasing recognition over recent decades. This recognition, and the growth in research with children as participants, has given rise to greater attention from researchers to ethical issues related to child research. This article reviews the current ethics documentation in New Zealand. The findings indicate that considerable variation exists between ethical codes and guidelines in relation to research with children. The dominant focus is on attending to issues of consent and protection from harm, at the outset of the research, rather than recognition of the ongoing nature of ethical issues throughout the research process. Although the findings indicate an increase in the consideration of ethical issues, the existing documentation is inconsistent and inadequate in attending to specific child‐related issues. Suggestions are made to enhance children's participation in research and demonstrate a respect for their participation rights.     

Improving utilisation of Māori land: Challenges and successes in the application of a participatory approach

Abstract

The limited impact of traditional extension techniques has resulted in the increasing use of participatory approaches to support interaction between Māori communities and scientists. This paper draws on the experience of a 5 year case study of such an approach among scientists and Māori on the East Cape. While supporting the value of a participatory approach, the paper argues that the adoption and use of such an approach must be viewed as an iterative process and one that challenges all participants, not only on operational detail, but on the ethical issues posed by such work. This paper highlights the value of a collaborative approach but questions the appropriateness of branding all such approaches as participatory research when used to support national policy initiatives. It concludes that participatory approaches challenge the scientists involved as much as the communities concerned and questions the validity of conventional measures of success in any evaluation of such work.     

Strengths-based creative mindfulness-based group work with youth aging out of the child welfare system

ABSTRACT

This article describes the outcomes of a doctoral study exploring the facilitation of an arts and mindfulness-based group for youth aging out of the child welfare system. Although there has been an upsurge in attention to the use of mindfulness-based interventions (MBIs) with children, there are still significant knowledge gaps regarding the use of MBIs with older youth who have experienced trauma, loss, and marginalization. At the same time, there is increasing attention to the importance of relationships to successful transitions in the lives of youth aging out of child welfare system. This research is qualitative and sought to explore how an innovative MBI was experienced by these youth. Data from semistructured interviews revealed key themes related to the unique challenges of being involved in the child welfare system and the aging-out process, the participants’ understanding and benefits of learning mindfulness, as well as their experience of social support through a collaborative group participation. The benefits of group participation, including meaningful engagement in the group process, are considered.     

Anonymous Enrollment in AIDS Prevention Telephone Group Counseling

SUMMARY

Participants in an outcome study of a 14-week AIDS prevention counseling intervention, delivered entirely by telephone, were able to enroll either confidentially or anonymously. Anonymous enrollees (27%) were more likely to be bisexual, in a primary relationship with a female, and colseted. They were less self-accepting of their sexual orientation, less acculturated in the gay community, and less likely to have close social supports for safer sex. They were less likely to have been tested for HIV antibodies or to have perticipated in risk-reduction programs despite reporting risk behaviors comparable to that of confidential perticipants. By the program's conclusion, most anonymous enrollees had provided their phone numbers or other personally identifying information. Participants who retained their anonymity throughout (10%) were less likely to complete treatment or follow-up assessments. The findings support the effectiveness of anonymous enrollment in facilitating the participation of potential clients and research subjects who might otherwise have remained unreached.     

Needs and Supports in Transitional Housing for People Living with HIV/AIDS in Ontario,Canada

ABSTRACT

There is a paucity of research on transitional housing for people living with HIV/AIDS (PHA) and even less so within the Canadian context. The present work addresses that gap and reports on the results from the Transitional Housing Study, a province wide community-based research collaboration involving PHA, service providers, and university researchers in Ontario Canada. This article answers the following research questions: What supports do residents in transitional housing for PHA access and what needs do these supports address? Developing from a thematic analysis of in-depth qualitative interviews with 25 residents in one of three transitional housing agencies in Ontario for PHA, the findings reveal that participants benefited from four key supports while in transitional housing: the provision of a safe environment, co-coordination and management of HIV (and other) drug therapies, assistance with appointments, and referrals to health and social services. Until more resources are available to increase availability of transitional housing for PHA, the nonprofit housing sector must fill the gap that exists by offering the types of supports identified in this study in order to address the needs of PHA. Future research may link these supports efficiently with concrete health improvements and permanent housing stability among PHA.     

HIV/AIDS treatments

Although fewer people are being diagnosed with AIDS in the U.S. and deaths continue to decline, the number of adults age 50 and older who are living with HIV/AIDS is larger than ever. It is likely that older people will continue to comprise an increasingly larger proportion of individuals diagnosed with HIV/AIDS, reflecting both the ineffective prevention efforts targeting older adults and the highly effective antiretroviral therapies that allow many people to live for significantly longer periods of time. These recent trends have created two distinct populations of older persons with HIV/AIDS: those who were infected later in life and those infected earlier and now aging with HIV disease. Aging with HIV/AIDS presents unique psychosocial challenges that may be exacerbated by the aging process. HIV-related stigma, social support and coping issues and evidence-based psychosocial interventions for older adults with HIV/AIDS are reviewed in this paper and suggestions for future research are discussed.     

Family and Friends of People with HIV/AIDS Support Group

ABSTRACT

Those who are supporting a loved one with HIV/AIDS are under a great deal of stress and need support too. This article describes a support group for family and friends living with HIV/AIDS in which members share their personal experiences, educate one another, and in the process, realize they are not alone as they learn to cope with the diagnosis of AIDS or HIV+ in someone they love. The struggles, conflicts, and emotions of the group members and of the group facilitators are discussed.     

Promoting Self-Efficacy and Self-Esteem for Multiethnic Sexual Minority Youth: An Evidence-Informed Intervention

ABSTRACT

Sexual minority youth face multiple challenges, yet research regarding evidence-informed practice strategies for this population is limited. This study describes the pilot efforts of Strengths First, the first strengths-based intervention created specifically to promote self-esteem and self-efficacy among multiethnic sexual minority youth. A pretest–posttest design was used to gather preliminary data from program participants (n = 162) about the potential effectiveness of the program during a 2-year period that ranged from the inception of the program in June 2008 to September 2010. Significant increases in self-esteem and self-efficacy were found. Implications for social service research and practice are discussed.     

Addressing the Vision Challenges of Residents at a Retirement Community: Collaborative Research with a Community Partner

ABSTRACT

Staff members at a community retirement village were concerned about the demise of a support group for residents with vision loss, and requested help developing effective services for residents with vision challenges. This study explored past barriers to support group participation, as they were perceived by residents, family members, and employees. The community partner worked collaboratively with the researcher in all phases of the study. Questionnaires were designed to elicit demographic data, diagnosed vision problems, level of adjustment to vision loss, well-being, and motivation for attending institutional programs about vision challenges. Residents responded to standardized vision and depression scales; qualitative questions were posed to all 3 groups concerning motivations for resident participation in program activities. Results indicated that, although many residents had diagnosed vision conditions, they were, in general, coping well with vision loss and did not report depressive symptoms. Participants considered ongoing personal contact and follow-up, a group design that offered the choice of educational presentations and/or process discussions, and individualized assistance with practical challenges to be critical to an effective program. This case study, utilizing a collaborative research process, generated requests for expanded social work services and an increased valuing of the social work role.     

The Tasks and Characteristics of Supportive Support Brokers

ABSTRACT

In the United States, under the Cash and Counseling or budget authority model of self-directed personal assistance where the participant manages his or her own services and supports, the Support Broker role was established to assist and coach the participant. The support broker role grew out of a person-centered planning process where focus groups and surveys helped ascertain what potential participants wanted to help them establish a self-directed alternative. But, despite this role being described in policy guidance from the Center for Medicare and Medicaid, little research has been conducted examining the functions, activities and usefulness of this position. This study draws on 76 ethnographic case studies with early Cash and Counseling participants, examines what participants and their caregivers actually saw the support broker doing, and looks at what the participants found helpful and less than helpful. Participants and family caregivers saw support broker duties as falling into four areas: Coaching, Problem Solving, Advocacy and Monitoring. Equally important was how the support broker performed these duties. Key aspects of quality included: Familiarity, Supportive Relationship, Proactive Engagement, Responsiveness, Knowledge and Cultural Friendliness. These findings can provide the basis for establishing quality indicators for self-direction.     

Providing Mental Health Services to Older People Living in Rural Communities

Summary

Rural dwelling elders who experience mental health problems often have difficulty finding help since rural communities often lack adequate mental health service providers. This paper reports on the initial phase of a 5-year, interdisciplinary clinical research study that is testing the effectiveness of providing a home delivered, therapeutic psychosocial intervention, aimed at improving the emotional well-being and the quality of life of medically frail elders who live in rural communities. In the early phases of this study, the clinical research team encountered a number of interesting and often unanticipated challenges as it attempted to recruit study participants and provide services to them. In this article, we examine these challenges and share what we have learned so far about providing mental health services to elderly persons living in rural environments.     

Addressing procedural challenges of ethical review system: Towards a better ethical quality of clinical trials review in Malaysia

The review of clinical trials with human participants in Malaysia is governed by a decentralized control system. The clinical trial protocols are reviewed by 13 registered research ethics committees (RECs) in Malaysia. A governmental body, the National Pharmaceutical Control Bureau, is responsible for the inspection and oversight of these registered RECs to ensure that they comply with the regulatory requirements. However, this study highlights that each REC in Malaysia has a different standard operating procedure and ethical review process. Other procedural challenges identified include inadequate membership, poor mechanism for research monitoring after ethical approval, and insufficient resources. Establishments of a national standard of REC and a central ethics committee are suggested to ensure procedural compliance in the oversight of clinical trials in Malaysia. While there is a growing concern that procedural compliance may not have a direct impact on the protection of human subjects, our key point is that an ethical review system compliant with the national standards could serve as a strong framework to support and enhance the ethical quality of decision-making and judgement. We believe that being aware of how influential procedural compliance can be would help committees improve the ethical quality of their research review.     

Building a Tailored,Multilevel Prevention Strategy to Support Children and Families Affected by Parental Incarceration

ABSTRACT

During the past several decades, a wave of incarceration engulfed the United States. In the wake of this “mass incarceration” are children and families who continue to struggle from its impact. Although findings are now emerging on the impacts of incarceration, there are few studies that have examined how to best intervene to promote positive development for those children who have had a parent incarcerated. While there are common risks and challenges faced by children and their families, the significant variation between and among these individuals and their relationships highlights the challenges in finding solutions. Given the number of issues at play, it is clear that a “one-size-fits-all” approach to addressing child needs is not sufficient. This article examines some of the common challenges faced by families impacted by parental incarceration as well as existing interventions designed to help support children and families overcome these challenges. It then offers some potential directions for the field to move, to develop a prevention strategy that meets the needs within the population and leads to better outcomes for the children of incarcerated parents, their families, and their communities.     

A Kaupapa Māori,culturally progressive,narrative review of literature on sport,ethnicity and inclusion

ABSTRACT

This Kaupapa Māori narrative review identifies themes in literature concerning sport, ethnicity and inclusion, from an indigenous ‘culturally progressive’ perspective. Scholars suggest that sport influences national identity and in Aotearoa/New Zealand, rugby is a rich site for examining such connections. Inclusiveness within sport is an expressed desire, although the academic scrutiny on this is limited. This study identifies and examines themes within literature (2008–2017), using a ‘Ngā Poutama Whetū’ culturally progressive review process, contributing nuanced understandings from the content. Results suggest that racist othering, representations and practices of ethnic minority exclusion are a reality in sport, although, locally, at least, the ‘cultural climate’ in sport strives for greater ethnic inclusivity. Conclusions suggest that current research in this domain is largely theoretical, insofar as challenges to organisations, power and privilege. However, future research should explore participants’ lived experiences at the intersections of ethnicity and inclusion in sport.     

Sexual Behaviors and Perceptions of HIV Risk in a Multiethnic U.S. Sample of Women Who Have Sex with Women

Abstract

This study investigated the sexual practices and perceptions of HIV risk in a national sample women who have sex with women (WSW). A multiethnic sample of 239 WSW aged 18–68?years attending GLBTQ pride events in three U.S. cities (Chicago, Atlanta, and Fort Lauderdale) completed an anonymous survey regarding their sexual behaviors, thoughts and perceptions of HIV risk. In the past 6?months, 18% of participants reported one or more male partners. Perception of HIV risk was associated with having more male partners (r?=?.244, p?r?=?.185, p?r?=?.191, p?r?=?.169, p?r?=?.208, p?相似文献