Shared decision-making between paediatric haematologists, children with sickle cell disease and their parents: an exploratory study
Ricardo Wijngaarde, Mijra Koning, Karin Fijnvandraat, Dirk Ubbink
European Journal of Pediatrics, 31 October 2023
Open access
Abstract
Children with sickle cell disease (SCD) face various healthcare choices to be made during the disease process that may impact their lives. Shared decision-making (SDM) could improve their health outcomes. We assessed if, and to what extent, paediatricians engage children with SCD and/or their parents in the decision-making process. In this observational cross-sectional study, paediatric SCD patients and their parents visiting the outpatient paediatrics clinic of a university hospital participated in a SDM baseline measurement. Two evaluators independently and objectively analysed the level of patient involvement in decision-making from the audio-recordings of the consultations using the OPTION-5 instrument, a 0–20-point scale from which scores are usually expressed as a percentage of ideal SDM. The level of SDM, as perceived by patients, parents and paediatricians, was appreciated using the SDM-Q-9 and SDM-Q-Doc questionnaires, respectively. Scores could range from 0% (no SDM) to 100% (exemplary SDM). Twenty-four consultations in which a decision needed to be made about SCD treatment were audiotaped and analysed; six were from each paediatrician. The group consisted of 17 male and 7 female patients from various cultural backgrounds between 2 and 17 years old, with a mean age of 9.4 years (SD 4.2). Median OPTION-5 scores were 25.0% [IQR] 20.0–40.0%; range 0–55%). Median SDM-Q-9 and SDM-Q-Doc scores were 56.7% (IQR 39.4–88.9%) and 68.9% (IQR 57.8–77.8%), respectively.
Conclusion
Although subjective scores of SDM were fair, the objectively scored level of SDM among children suffering from SCD leaves room for improvement. This may be realized by increasing knowledge about the benefits of SDM, child-centred SDM interventions and SDM-training for paediatricians that takes into account the complexity of intercultural challenges and risk communication between stakeholders.

Ethical Considerations for Engaging Children and Adolescents Living with HIV in Research in African Countries: A Systematic Review
Emma Gillette, Winstone Nyandiko, Ashley Chory, Michael Scanlon, Josephine Aluoch, Nandini Choudhury, Daniel Lagat, Celestine Ashimosi, Whitney Biegon, Dennis Munyoro, Janet Lidweye, Jack Nyagaya, Ilene Wilets, Allison DeLong, Rami Kantor, Rachel Vreeman, Violet Naanyu
Journal of Empirical Research on Human Research Ethics, 23 October 2023
Abstract
Research engaging children and adolescents living with HIV (CALWH) is critical for youth-friendly services and HIV care, and researchers need to ensure that such engagement is ethical. We conducted a systematic review to identify key ethical considerations for the engagement of CALWH in research. The review focused on primary research articles conducted in African countries that examined ethical issues in CALWH engaged in research. Ten studies met the inclusion criteria; the following seven key domains were extracted: 1) justifications for engaging CALWH in research; 2) community involvement; 3) informed consent/assent; 4) caregiver involvement; 5) perceptions of benefits; 6) perception of the risks of involvement; and 7) confidentiality. These domains can inform the ethical engagement of CALWH in research.

Ethical and Legal Nuances in Child and Adolescent Mental Health
Book Chapter
Pratibha Gehlawat, Tanu Gupta
Handbook of Research on Child and Adolescent Psychology Practices and Interventions, 2023 [IGI Global]
Abstract
Child and adolescent psychiatry are mainly concerned with the diagnosis and treatment of mental disorders in child and adolescent populations. The children are vulnerable and their ability to understand matters related to their well-being is restricted. Common ethical issues in children and adolescents include assent, consent, autonomy, confidentiality, justice, and equity. The chapter discusses ethical issues as well as the difficulties faced in following ethics. The chapter outlines the summary of the existing laws pertaining to children and adolescents in India including the basic rights and criminal responsibility. The laws related to child and adolescent mental health are discussed in detail. The provisions related to treatment of minors under Mental Health Care Act, 2017 is discussed along with the critical appraisal. Critical appraisal of other relevant laws/Acts allied to children and adolescent mental health is discussed. The need for formal training of all mental health professionals regarding the laws and acts of the land is also highlighted.

Young Children as Co-Researchers: Authentic Partnership in an Early Childhood Context
Book Chapter
Catherine Kelly, Fionnuala Waldron, Thérèse Dooley
Pushing the Boundaries of Human Rights Education, 2023 [Routledge]
Abstract
Under Article 12 of the United Nations Convention on the Rights of the Child (UNCRC), children have the right to express their views freely and to have those views given due consideration in accordance with their age and maturity; this right also applies in the context of research. Premised on changing conceptions of children and childhoods and on the impact of Article 12 of the UNCRC, the active participation of children in research has become standard practice for researchers whose work is focused on children’s lives and the complex nature of such practice is well-documented. However, age remains a limiting factor and less attention has been given to the idea of very young children as co-researchers and to the methodological and ethical tensions that might ensue from such an approach. Guided by a children’s rights framework, this chapter examines the idea of engaging with young children (5–6 years) as co-researchers in a classroom context. Ultimately, the chapter argues that, while the idea of children as co-researchers in the context of early childhood education is a challenging one, through the use of innovative approaches which prioritise children’s participation, perceived barriers relating to age and maturity can be substantially overcome, resulting in research findings that are grounded in children’s perspectives and experiences.