(De)colonising outcomes of community participation – a South African ethnography of ‘ethics in practice’

Theoretically, community participation decolonises research ethics in settings where a ‘coloniality of power’ persists. We used ethnographic methods to document our experiences of ‘ethics in practice’, and interrogate the (de)colonising outcomes, of community participation in voluntary informed assent and consent (VIAC) procedures with 16–17-year-old Black South African youth and parents. Community participation decolonised by: (1) disrupting and problematising the power dynamics of written VIAC procedures and (2) minimally shifting power to youth and parents. However, community participation sometimes reinforced existing power hierarchies. In postcolonial qualitative research settings, community participation has potential to, but will not necessarily, decolonise ethics in practice.

Analyze the Predicament

Analyzing the ethical predicament begins with identifying the primary client. This chapter differentiates the primary client from other participants, such as supplicants, targets, beneficiaries, and consultees. This chapter also identifies important nonclient stakeholders, including school administrators, teachers, other mental health professionals, other students, and community members. It provides eight types of organizational power that stakeholders can wield, including legitimate, reward, coercive, expert, referent, information, affiliation, and group power. It recommends determining the ethical values in conflict and the competing ethical principles involved. It recommends that mental health professionals provide an ethical orientation at the outset of the relationship and understand the differences between informed consent, informed assent, passive consent, and informed dissent.

Does a comic style informed assent form improve comprehension for minors participating in clinical trials?

Background Several authors have shown that children and adolescents have limited understanding of critical elements of the research studies in which they are participating. The inclusion of graphic elements is a promising approach to increase the understandability of assent forms of clinical trials. Objectives To design a new assent form in comic strip format for minors participating in clinical trials and to compare the comprehension of this new document with a traditional assent form. Methods This study included an assessment of the readability of standard informed assents, the evaluation of the comprehension of one of these documents, the development of a new (comic format) informed assent from the original document previously evaluated, and the analysis of readability and comprehension of the new informed assent. The readability of the documents was assessed using previously validated formulas, whereas comprehension analyses were performed through a questionnaire taken by two groups of 12-year-old students of secondary schools. Ethical considerations: All procedures involving human participants were in accordance with the ethical standards of the 1964 Helsinki Declaration and its later amendments. Findings Compared with the original document, the comic assent form improved the grammatical readability of the “Aims, Risks and Benefits and How to Get More Information” sections, the comprehension scores in the Aims and Procedure sections, the understanding of ideas, and the formation of macro-ideas. The benefits of the comic strip format were more noticeable among participants in the lower percentiles of the comprehension score. Conclusions Our results show that the comic assent form has high readability and comprehensibility compared with its original form, particularly in the domains of knowledge-based inferences and macro-ideas formation. The use of forms that combine text and comic strips may help the comprehension of minors participating of a clinical trial, supporting their autonomy in decision-making.

Microsurgical Ligation of Residual Fistulous Arteriovenous Shunt From a Radicular Artery to a Thoracic Arteriovenous Malformation: 2-Dimensional Operative Video

The literature has long attempted distinct classifications of arteriovenous fistulae and arteriovenous malformations of the spine.1-3 It is worth noting that lesions can become more complex during recurrence and may not adhere to traditional definitions. In these cases, recognizing the principles of pathology and pathophysiology can guide management and treatment. We present the case of a spinal arteriovenous malformation with recurrence after prior treatment that is managed in the setting of a second opinion with a multidisciplinary approach. This case demonstrates (1) an evolution of recurrent arteriovenous shunting pathology observed both in the endovascular suite, and under direct microscopic visualization and (2) considerations in multimodal treatment with endovascular devices during microsurgical dissection and extirpation. This manuscript was prepared with informed assent provided by the patient (a minor) and with informed consent by the parent of the patient, who is their legal representative and health-care proxy.

Cost-Conscious Growth-Promoting Treatment: When Discretion Is the Better Part of Value

Assessing cost-effectiveness of human growth hormone (hGH) treatment to augment height is complicated by uncertainty about how best to measure its therapeutic effect. Cost-conscious growth promotion practice, however, is possible and likely an emerging practical requisite as health care payers increasingly deny the medical necessity of and restrict support for short stature treatment. The increase in denials is not surprising given the expansion and continued high cost of hGH treatment, debate about the value of such treatment, and universal need to restrain burgeoning health care costs. Renunciation of sweeping payer rejection of hGH-for-height treatment is strengthened by cost-conscious practices that (1) recommend no treatment for most short children and restrict treatment to severe, likely disabling short stature; (2) initiate hGH treatment only after evidence-based informed assent; (3) utilize alternative less costly and less invasive options when possible; (4) minimize hGH treatment duration and dosage; and (5) resist enhancement of normal adult stature. A new era of cost-conscious hGH prescribing that prompts thoughtful restraint in hGH use could help preserve hGH approval for children most in need of treatment.

Children’s ongoing and relational negotiation of informed assent in child–researcher, child–child and child–parent interaction

Contemporary considerations of childhood research ethics recognize children’s competence and agency, their rights to be informed about research and their capabilities to negotiate participation. There is also a recognition of children’s assent as ongoing and formed in the relationship with the researcher. Drawing on two different data sets, we investigate information and assent as they appear in child–researcher, child–child and child–parent interactions. We argue for the need to pay attention to participants’ own meaning-making with regard to informed assent, and show how the presence or non-presence of the researcher in data collection may affect information and assent.