Waivers of parental consent for sexual minority youth

ABSTRACT

The Society for Adolescent Health and Medicine emphasizes the need for research to focus on the health outcomes of sexual minority youth (i.e., lesbian, gay, bisexual, transgender, queer). However, sexual minority youth (SMY) are often less willing to participate in research studies where parental consent is required due to potential victimization and discrimination. This is a major concern given that more research is needed to understand the health needs of this population, especially in terms of suicide, substance use, and HIV prevention. The National Suicide Prevention Strategy classifies SMY as a high-risk group, emphasizing the need to explore suicide risks (along with other health outcomes) among this group. However, this high-risk classification also increases the safeguards necessary to conduct research with this population. Many researchers have argued for waivers of parental consent, but such waivers present with several ethical implications. This article discusses ethical principles, risks, benefits, safeguards, and potential alternative approaches to waivers of parental consent for SMY. We conclude by emphasizing the need for policy changes to allow parental consent waivers for research targeting SMY.     

Could I do something like that? Recruiting and training foster carers for teenagers “at risk” of or experiencing child sexual exploitation

Child sexual exploitation (CSE) is a category of child abuse that was historically created to recognize the victimhood of children and young people, illuminating the ways that their evolving capacity to consent to sex is manipulated and undermined. Using evidence from the evaluation of specialist foster care provision and a CSE training course for foster carers, this paper considers how training might be used to widen the pool of potential foster carers for children affected by CSE and identifies qualities displayed by effective carers. It argues that improving the recruitment of foster carers can create safer home environments for teenagers at risk of or experiencing sexual exploitation and reduce the risk of further harm and that informed and effective foster care provision is crucial to prevent both the sexual exploitation of looked‐after teenagers and placement breakdowns that can ultimately increase risk.     

Ethical consideration of the research proposal and the informed-consent process: An online survey of researchers and ethics committee members in Thailand

Researchers designing and conducting studies using human data should consider the values and principles of ethical conduct. Research ethics committees (RECs) typically evaluate the ethical acceptability of research proposals. Sometimes, differences arise between how researchers and RECs interpret ethical principles, and how they decide what constitutes ethical conduct. This study aimed to explore the opinions of these two groups about the importance of core ethical issues in the proposal and in the informed-consent process. An anonymous online questionnaire was distributed to a target population in health-related academic/research institutes across Thailand; 219 researchers and 72 REC members participated. Significantly, more REC members than researchers attributed the highest importance to three core ethical considerations – risk/benefit, vulnerability, and confidentiality/privacy. For the informed-consent process, significant differences were found for communication of risks, decision-making authority for consent, process for approaching study participants, and availability of a contact for study deviations/violations. The different ratings indicate differences in the groups’ perspectives on ethical principles, which may affect focal congruence on ethical issues in the proposal. Communication of these findings should help close gaps between REC and researcher perceptions. Further study should investigate how RECs and researchers perceive equivocal ethics terms.     

Living with an elephant: Growing up with parental substance misuse

Although parental substance misuse is now a focus of concern in child welfare practice, we know little about what it is really like for children who grow up in families where adult drug and/or alcohol use is an issue. Set against a backdrop of research links between parental substance misuse and child maltreatment, this article examines a number of studies that focus on the experiences of children and young people in this context. Emerging themes are identified which provide insight into the world of children for whom a substance is, effectively, a family member –‘the elephant in the living room’– and the implications for practice, particularly in relation to children's visibility, disclosure and confidentiality, are considered. It is argued that a focus on the ‘elephant’ often leads to children remaining ‘invisible’ to those whose role it is to ensure their welfare.     

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.     

Balancing parents' and very young children's rights in care proceedings: decision-making in the context of the Human Rights Act 1998

This paper explores whether the Human Rights Act 1998 has influenced the approach a range of professionals, including social workers, managers and children's guardians adopt when they examine and seek to balance the potentially competing rights of parents and children involved in care proceedings. Drawing on findings from an empirical study of the decision‐making process that influences the life pathways of very young children in care, it also explores some of the dilemmas professionals face in their day‐to‐day practice and examines whether parental rights are prioritized over children's rights in certain instances.     

Young carers in Sweden—A pilot study of care activities,view of caring,and psychological well‐being

Children who have parents with any kind of illness may become young carers who take a responsibility not expected of children for household tasks, or personal or emotional care for parents and siblings. So far, little is known about children in Sweden who are at risk of becoming young carers. The aim of this article is therefore to explore the extent and impact of children's caring activities as reported in a pilot study by a sample of children in Sweden. A number of international questionnaires measuring the amount of caring activities, impact of caring, quality of life, and psychological well‐being were translated and combined into a survey. The pilot survey was completed by 30 children 10–18 years of age. Also, when completing the survey, the children were interviewed concerning their experiences of caregiving. The participants report on a group level emotional symptoms such as fear and nervousness above the clinical cut‐off value. They also rate a lower level of caring compared with findings from the United Kingdom, but they report a higher degree of negative impact of caring than young carers in the United Kingdom.     

Parental affect profiles predict child emotion regulation and classroom adjustment in families experiencing homelessness

Parenting shapes the development of emotion regulation skills in early childhood, laying a key foundation for social-emotional adjustment. Unfortunately, high adversity exposure may disrupt parental emotion socialization practices and children's regulatory development. The current study used variable- and person-centered approaches to evaluate links among parental emotion expressiveness, children's observed emotion regulation, and teacher-reported adjustment among 214 4- to 6-year-old children experiencing homelessness, an indicator of high cumulative risk and acute adversity. Structured parent-child interaction tasks were recorded on site in emergency shelters over the summer and micro-socially coded for parent and child expressions of anger, positive affect, and internalizing distress. We anticipated that parental modeling of predominantly negative emotion expression would be associated with more child dysregulation during parent-child interaction and worse adjustment at school, as reported by teachers the following school year. Preliminary analyses indicated that children's observed difficulty downregulating anger was associated robustly with teacher-reported social-behavioral problems. Latent profile analysis was used to identify three patterns of parental emotion expression characterized by above-average expression of positive affect, internalizing distress, and anger. Parents’ likelihood of membership in the elevated anger profile significantly predicted children's observed difficulty down-regulating anger and higher social-behavioral problems at school. In addition to ongoing efforts to reduce poverty-related risk, supporting adaptive anger regulation in parents and young children may be important for enhancing resilience among families experiencing homelessness and similar conditions of high cumulative risk.     

COVID-19: Impact on children living in out-of-home care and their carers

Children enter out-of-home care (OOHC) having experienced significant childhood adversities and trauma. Little is known about the short-term impacts of the COVID-19 pandemic on this vulnerable group. To gain some insights, we analysed the early impacts on the well-being and experiences of children in OOHC and their carers using the Pathways of Care Longitudinal Study data prior to and post the first lockdown restrictions. A total of 862 children, young people and their carers were interviewed either pre-COVID-19 restrictions (n = 567) (April 2019–March 2020) or post-COVID-19 restrictions (n = 295) (June–December 2020). While the two groups showed no significant differences in socio-emotional well-being, both the pre- and the post-COVID-19 restriction groups of children in OOHC had slight reductions in socio-emotional well-being. The interviews with the post-COVID-19 group showed that the pandemic restrictions affected children's well-being and behaviour, education, social and physical activities, as well as time spent with their birth family. Likewise, interviews with carers post-COVID-19 found a negative effect on carers' well-being, their ability to manage financially and their capacity to care and access services and support. The article contributes new evidence to inform OOHC policy and practice to support service systems facing unique challenges arising from a pandemic.     

‘It's about the whole family’: family contact for children in kinship care

Contact with family for children in care is identified as a right under the United Nations Convention on the Rights of the Child. However, such contact often presents challenges because of the protective concerns that have led to care arrangements being made. The Family Links: Kinship Care and Family Contact research study explored the nature and extent of family contact in kinship care, with a particular focus on the circumstances that create positive contact and foster family relationships. Findings included evidence of a large proportion of parental contact that was negatively affecting children's well‐being, and was sometimes unsafe. By contrast, the frequent contact that children were enjoying with their siblings and wider family was reported to be mostly positive and supportive. Kinship carers described a range of services needed to facilitate more positive parental contact and to enable children to keep contact with significant family members.     

Carers and Professionals' Perspectives on Foster Care Outcomes: The Role of Contact

This study investigates the association between the contact of children or young people in care with their family, and the foster care placement evaluation (positive or negative) in Portugal. According to the perspectives of foster carers and service professionals' perceptions regarding children and young people's reactions, during and after the visits, are measured. Utilizing a quantitative approach, two fostering services teams and 140 foster carers completed questionnaires, which had 212 children in common. Results indicated that despite the importance of continued contact, especially for children and their parents, it was not determined to be essential to long-term placement. On one hand, there was the perception that a high percentage of children expressed positive reactions during and after the visit, while on the other hand, this didn't influence the perception of placement success. This study also showed significant differences between foster carers' and the professionals' perceptions on several dimensions of foster care, especially the children's reactions during visits. These differences need to be further analyzed in future research and the outcomes used to help improve contact management.     

Children living with parental substance misuse: A cross‐sectional profile of children and families referred to children's social care

Parental substance misuse is a significant public health and children's rights issue. In the United Kingdom, social workers frequently work with children and families affected by substance misuse. However, relatively little is known about this population, particularly at point of referral to children's social care. This paper reports on the largest known study of parental substance misuse as a feature of children's social care work in England. The paper provides a cross‐sectional profile of 299 children living with parental substance misuse and referred to children's social care in one local authority in England. Data were collected from social work case files at the point of referral to social care about the child, family, the wider environment, and parental substance misuse. The findings show that children affected by parental substance misuse frequently had other support needs relating to their well‐being and mental health. Children were also likely to be experiencing other parental and environmental risk factors. The significant historical—and in some cases intergenerational—social care involvement for some families indicates potential issues with the capacity of services to meet needs. Recommendations for practice are discussed with a particular focus on the need for early, comprehensive support for children and families.     

Opportunities and Challenges for Studying Disaster Survivors

Studying survivors of natural disasters and traumatic events provides a unique opportunity to address some of the important and difficult questions in psychology and other social sciences. However, such an opportunity does not come without challenges. Several methodological challenges to studying survivors of natural disasters are discussed, including recruiting participants, choosing appropriate procedures, and the safety of data collectors. Several ethical issues are also presented, such as the ability of participants to make decisions, the impact of participating, and the importance of informed consent. In addition, approaches are suggested that help to deal with these methodological and ethical challenges. We conclude that while attention must be focused on methodological and ethical considerations, research stemming from natural disasters should be employed to answer important basic and applied conceptual questions and address issues of practice and policy, while assuring that steps have been taken to protect participants and that the potential risks are minimal.     

Assessment of hostile and benign intent attributions in early childhood: Can we elicit meaningful information?

Throughout middle childhood and adolescence, hostile intent attributions fairly consistently predict levels of aggression. Across 28 published studies in early childhood, however, researchers have found less consistent relationships. We believe this may be due to a majority of these studies using an inappropriate methodological approach for early childhood, forced‐choice questioning. We tested the use of open‐ended vs. forced‐choice questions about intent in 118 Head Start preschool children. In response to a forced choice question, only about 30% of children attributed intent correctly to a video depicting clearly purposeful behavior. And across 18 video vignettes depicting ambiguous provocation, children's intent attribution scores based on a forced‐choice approach demonstrated neither reliability nor validity. Conversely, children's intent attribution scores in response to open‐ended questions demonstrated reliability, correspondence with other aspects of social information processing, and predictive validity in the form of relations to teacher reports of social competence and aggression. Researchers should refrain from utilizing forced‐choice approaches to intent attributions in early childhood unless also conducting intent understanding checks.     

Disclosing conflicts of interest to research subjects: an ethical and legal analysis

In this article, I examine the ethical and legal issues related to disclosure of conflicts of interest to research subjects, and discuss some empirical studies related to the topic. I argue that researchers have an ethical obligation to disclose conflicts of interest to research subjects, provided that they take steps to help subjects understand information about conflicts of interest and how to interpret it. Researchers also may have a legal duty to disclose conflicts of interests to subjects, depending on the facts of the case and the court's interpretation of the law. To reinforce and clarify the legal obligation to disclose conflicts of interest, the federal regulations should be amended to include disclosure of conflicts of interest as one of the informed consent requirements. Institutional review boards play a key role in helping researchers to disclose conflicts of interest to subjects in an appropriate manner. Institutional review boards should approve the disclosure language in informed consent documents, and they should require researchers to disclose financial interests to research subjects, if they have any, as a condition of approval.     

What a tangled web we weave: ethical and legal implications of deception in recruitment

Deception in human subject research is neither uncommon nor prohibited. The use of deception in the recruitment phase of clinical research has received relatively little attention. Given that informed consent is foundational to human subject research, the practice of misrepresenting the study purpose in clinical research would seem to contradict one of the fundamental tenets of ethical human subjects research. Using the example of prodromal psychosis, this article the ethical and legal implications of deception in recruitment and the sufficiency of current guidance on the practice when the study involves a stigmatizing condition, the collection of genetic samples, or both. I conclude that when these two elements are present, deception should only be used when absolutely necessary and, if used, researchers should be required to debrief participants before the collection of genetic samples and give particular attention to minimizing risks of privacy breaches.     

What a Tangled Web We Weave: Ethical and Legal Implications of Deception in Recruitment

Deception in human subject research is neither uncommon nor prohibited. The use of deception in the recruitment phase of clinical research has received relatively little attention. Given that informed consent is foundational to human subject research, the practice of misrepresenting the study purpose in clinical research would seem to contradict one of the fundamental tenets of ethical human subjects research. Using the example of prodromal psychosis, this article the ethical and legal implications of deception in recruitment and the sufficiency of current guidance on the practice when the study involves a stigmatizing condition, the collection of genetic samples, or both. I conclude that when these two elements are present, deception should only be used when absolutely necessary and, if used, researchers should be required to debrief participants before the collection of genetic samples and give particular attention to minimizing risks of privacy breaches.     

Ethics in population-based genetic research

Population-based genetic research, including genetic epidemiology, shows tremendous potential to elucidate the role of genes as causal factors in complex and common human diseases. Like all research with human subjects, full realization of these benefits requires careful attention to its ethical conduct, establishing an appropriate balance between individual protections and the advancement of scientific and medical knowledge. This article reviews the growing literature on genetics research and ethics to describe some of the fundamental ethical issues in population-based genetics research, including research design, recruitment and informed consent, and dealing with research results. Its focus is on areas where consensus is forming and where future work is needed.     

Disclosing Conflicts of Interest to Research Subjects: An Ethical and Legal Analysis

In this article, I examine the ethical and legal issues related to disclosure of conflicts of interest to research subjects, and discuss some empirical studies related to the topic. I argue that researchers have an ethical obligation to disclose conflicts of interest to research subjects, provided that they take steps to help subjects understand information about conflicts of interest and how to interpret it. Researchers also may have a legal duty to disclose conflicts of interests to subjects, depending on the facts of the case and the court's interpretation of the law. To reinforce and clarify the legal obligation to disclose conflicts of interest, the federal regulations should be amended to include disclosure of conflicts of interest as one of the informed consent requirements. Institutional review boards play a key role in helping researchers to disclose conflicts of interests to subjects in an appropriate manner. Institutional review boards should approve the disclosure language in informed consent documents, and they should require researchers to disclose financial interests to research subjects, if they have any, as a condition of approval.     

The mediating role of coping self‐efficacy beliefs on the relationship between parental conflict and child psychological adjustment

The effect of parental conflict on children's psychological adjustment is variable. Coping self‐efficacy refers to a person's perceived ability to self‐motivate and access the required cognitive resources to take control of, or exert their coping efforts in a stressful situation. This study investigated the mediating role of children's coping self‐efficacy beliefs between parental conflict and children's psychological adjustment (internalizing, externalizing, anxiety, and prosocial behavior). The participants were 663 school students in grade 5 (M = 10.17 years, SD = .53) and grade 7 (M = 12.11 years, SD = .52). The ethnic composition of the sample was approximately 72% White, 20% Asian, 4% Middle Eastern, and 4% from other ethnic groups. Coping self‐efficacy for avoiding maladaptive cognitions mediated the effect of parental conflict on children's internalizing symptoms longitudinally. The higher the level of parental conflict, the lower the level of children's coping self‐efficacy for avoiding maladaptive cognitions and in turn the higher their levels of internalizing. These findings support the mediational role of children's coping self‐efficacy beliefs in the context of parental conflict. It is proposed that these beliefs should be considered in designing and implementing preventative interventions for children in the context of parental conflict.