Consent and confidentiality: exploring the ethical challenges of working with young people [CONFERENCE PAPER]
Zoe Morris, Nicholas Gamble
International School Psychology Association Annual Conference 2021, 13-16 July 2021
Abstract
Working with young people, particularly within schools, is complex work for psychologists and counsellors, both ethically and legally. Little is known about the process by which psychologists and counsellors determine the capacity for young people to provide their own consent for services – yet this process is undertaken everyday by school psychologists. This paper aimed to explore role that context and client characteristics may play in assessing a young person’s capacity. This paper presents findings from a study of 108 practitioners working in Australia. Participants responded to questions related to how they undertake an assessment of capacity in a young person and what factors are considered to support or negate capacity to consent. Responses provided insight into practitioner reasoning and decision-making processes when facing ethical dilemmas with young people as clients. This paper will explore current practice, highlight common challenges for school psychologists, and integrate with current guidelines and policy.

Beyond Agree or Disagree: A Consent Story and Storytelling for Indonesian Children
Fitri Arlinkasari, Debra Flanders Cushing, Evonne Miller
Ethics and Integrity in Research with Children and Young People, 4 November 2021
Abstract
Researchers face many ethical challenges when conducting research with children. Ethical issues can be even more significant when researchers work with children from low-income urban settings in the Global South. This chapter presents reflections on research conducted with children aged 6–12 years old who live in Jakarta, Indonesia. Underpinned by the new sociology of childhood, the study was designed to gather these children’s perspectives on child-friendly public spaces in their neighbourhoods. A range of qualitative methods were used including child-led tours, drawings, observations and interviews. As part of the study, the authors developed and reflected on the use of story and storytelling to deliver the research information and obtain the children’s consent to participate. The authors’ experience demonstrates that story and storytelling supported children’s competence and engaged them in a meaningful informed consent process. This approach is especially relevant for children with low literacy skills and whose parents or caregivers may not be available to help children decide on their participation in research. The chapter concludes with recommendations for effectively approaching this ethical challenge in future social research with children from similar backgrounds.

Assent or Consent? Engaging Children in Ethnographic Study [BOOK CHAPTER]
Ruth Barley
Ethics and Integrity in Research with Children and Young People, 4 November 2021 [Emerald Publishing Limited]
Abstract
Can children give their informed consent to participate in a research study, or can they only provide assent? This chapter explores this tricky question by drawing on three stages of a longitudinal ethnography within a multi-ethnic school in the north of England. Illustrative examples are used to show how the ability to give consent is not based on age alone, but rather on children’s experiences and confidence, the type of research conducted, and the researcher’s own expertise in communicating with children. The chapter provides examples of children’s active and ongoing negotiation of consent and through their choice to withdraw consent, ‘correct’ the researcher’s interpretations, actively produce their own written field notes and reflect on data collected as part of fieldwork. To facilitate consent, children were given time and space to familiarise themselves with the researcher and the study. Actively involving children in all stages of the study highlighted the importance of familiarisation and participation to the processes of informed consent to ensure children’s ongoing and meaningful involvement in the research.

Stakeholder-informed conceptual framework for financial burden among adolescents and young adults with cancer
Original Article
Suzanne C. Danhauer, Mollie Canzona, Reginald D. Tucker-Seeley, Bryce B. Reeve, Chandylen L. Nightingale, Dianna S. Howard, Nicole Puccinelli-Ortega, Denisha Little-Greene, John M. Salsman,
Psycho-Oncology, 26 October 2021
Abstract
Background
Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one’s education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure.
Methods
In-depth concept elicitation interviews were conducted with a purposive-selected stakeholder sample (36 AYAs and 36 AYA oncology healthcare providers). The constant comparative method was used to identify themes that illustrate AYAs’ experience of financial burden by stakeholder groups.
Results
Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost “ripple effects”; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long-lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs.
Conclusions
Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient-reported measure of financial burden among AYA cancer survivors.

Informed Consent, Confidentiality, and Practitioner Disclosure in Therapeutic Work with Youth: A Systematic Review of Practitioners’ Perspectives
Systematic Review
Rachelle E. Thannhauser, Zoe A. Morris, Nicholas Gamble
Adolescent Research Review, 11 October 2021
Abstract
Mental health practitioners provide therapeutic interventions to youth on a daily basis, yet sparse research exists to inform ethical decision-making. It is commonly understood that therapeutic work with youth is ethically complex especially when considering informed consent and confidentiality, both of which have practical limitations. This review synthesized literature which reported practitioners’ perspectives (e.g., psychologists, social workers) on ethical decision-making about informed consent and confidentiality in therapeutic work with youth. Specifically, this review aimed to amalgamate relevant professional perspectives on work with youth who may be considered “Mature Minors” or “Gillick Competent,” indications of capacity to consent to intervention. Included studies (n = 25) largely originated in North America (40%), suggesting an underrepresentation of culturally diverse practitioners and help-seeking youth in available literature. Most studies concentrated on confidentiality (72%) and few considered decision-making related to informed consent. Adolescent risk-behavior and related potential for harm were prevalent factors in practitioners’ decision-making. This review demonstrates that practitioners endorse disparate decision-making factors and are limited in consensus to breach confidentiality. As such, practitioners demonstrate variance in approach to working with this developmentally vulnerable population.

Aligning Family–Clinician Expectations During Pediatric Surgical Informed Consent; Development and Implementation of an Innovative Communication Skills Workshop
Adena Cohen-Bearak, Elaine C. Meyer, Lauren Mednick, Pamela Varrin, Lisa Burgess, Pia Kuhlmann, Sigall Bell, Craig Lillehei
Journal of Continuing Education in the Health Professions, 1 October 2021
Abstract
Introduction
Aligning expectations during the informed consent process before a child’s surgery is an important element of good communication that benefits both surgical staff and families. We developed and evaluated a 2-hour pilot interprofessional workshop to improve the communication and relational skills of pediatric surgeons and nurse practitioners.
Methods
Focus groups with families identified key challenges in the process of informed consent. An interprofessional team, including parents whose children had experienced complex surgeries, developed the workshop collaboratively. A realistic simulation with professional actors portraying parents allowed surgical staff to practice communication skills and receive feedback about the parent perspective. Participants completed a postworkshop evaluation to determine whether the workshop met its objectives and whether they would change practice.
Results
Five key themes identified for the workshop included customize communication; align expectations; share clinical uncertainty; recognize/attend to emotions; and identify team members. Thirty-five clinicians participated in a workshop, and 89% completed evaluations. Three-quarters reported the learning to be valuable, and 64% were likely to change practice. Eighty-seven percent would recommend the workshop to other colleagues, and 58 to 74% felt more prepared to achieve each of eight specific skills.
Discussion
An innovative workshop for pediatric surgical practitioners to align family–clinician expectations can help improve clinician communication skills and comfort with informed consent. Keys to workshop development included involving parents to identify themes and participate as workshop co-faculty; enlisting leadership and recruiting surgical champions; and using pre-existing meetings to ease scheduling challenges of busy practitioners. Booster sessions may facilitate the desired cultural changes.

The Narrative Approach to Informed Consent: Empowering Young Children’s Rights and Meaningful Participation [BOOK]
Fiona Mayne, Christine Howitt
Routledge, 16 November 2021
Abstract
    The Narrative Approach to Informed Consent: Empowering Young Children’s Rights and Meaningful Participation is a practical guide for researchers who want to engage young children in rights-based, participatory research. This book presents the Narrative Approach, an original and innovative method to help children understand their participation in research. This approach moves away from traditional paper-based consent to tailor the informed consent process to the specific needs of young children. Through the Informing Story, which employs a combination of interaction, information and narrative, this method enables children to comprehend concepts through storytelling. Researchers are stepped through the development of an Informing Story so that they can deliver accurate information to young children about what their participation in research is likely to involve. To further inform practice, the book documents the implementation of the Narrative Approach in four case studies demonstrating the variety of settings in which the method can be applied.

The Narrative Approach to Informed Consent addresses the rights of young children to be properly researched, expands opportunities for their active and engaged research participation, and creates a unique conceptual ethical space within which meaningful informed consent can occur. This book will be an invaluable tool for novice and experienced researchers and is applicable to a wide range of education and non-education contexts.

Transparent reporting of recruitment and informed consent approaches in clinical trials recruiting children with minor parents in sub-Saharan Africa: a secondary analysis based on a systematic review
Research Article
Angela De Pretto-Lazarova, Domnita Oana Brancati-Badarau, Christian Burri
BMC Public Health, 28 July 2021; 21(1473)
Open Access
Abstract
Background
Standardised checklists of items to be addressed in clinical study protocols and publications are promoting transparency in research. However, particular specifications for exceptional cases, such as children with minor parents are missing. This study aimed to examine the level of transparency regarding recruitment and informed consent approaches in publications of clinical trials recruiting children with minor parents in sub-Saharan Africa. We thereby focused particularly on the transparency about consenting persons (i.e. proxy decision-makers) and assessed the need to expand reporting guidelines for such exceptional cases.
Methods
We conducted a secondary analysis of clinical trial publications previously identified through a systematic review. Multiple scientific databases were searched up to March 2019. Clinical trial publications addressing consent and potentially recruiting children with minor parents in sub-Saharan Africa were included. 44 of the in total 4382 screened articles met our inclusion criteria. A descriptive analysis was performed.
Results
None of the included articles provided full evidence on whether any recruited children had minor parents and how consent was obtained for them. Four proxy decision-maker types were identified (parents; parents or guardians; guardians; or caregivers), with further descriptions provided rarely and mostly in referenced clinical trial registrations or protocols. Also, terminology describing proxy decision-makers was often used inconsistently.
Conclusions
Reporting the minimum maternal age alongside maternal data provided in baseline demographics can increase transparency on the recruitment of children with minor mothers. The CONSORT checklist should require clinical trial publications to state or reference exceptional informed consent procedures applied for special population groups. A standardized definition of proxy decision-maker types in international clinical trial guidelines would facilitate correct and transparent informed consent for children and children with minor parents.

Can I Share Your Ideas With the World? Young Children’s Consent in the Research Process
Sonya Gaches
Journal of Childhood Studies, July 2021; 46(2)
Open Access
Abstract
Utilizing the four features of informed consent from the guiding document Ethical Research Involving Children, the article illustrates how the informed consent process was carried out with young children from the initial planning stages through the ongoing research’s focused conversations. Specifically, the questions of what would be needed to acquire informed consent from the children and what assurances could there be that young children understood the research and how its results would be disseminated are addressed. The article concludes with suggestions for what other researchers might consider and include in their local contexts.

Editor’s note: The abstract references the 2013 unicef report Ethical Research Involving Children.