Ethical considerations for research involving boys diagnosed with attention-deficit/hyperactivity disorder

ABSTRACT

The ‘new sociology of childhood’ has activated a growing interest in children as social actors and their level of involvement in activities that affect their lives. In the field of research, debate is underway regarding the consent processes and methodological activities that support child participation. This paper highlights methodological and ethical considerations that emerged while engaging in research with young boys (aged 9–11 years old) with a formal diagnosis of attention-deficit/hyperactivity disorder (ADHD). Key issues include recruitment, informed consent, and participatory activities for data production. Sociocultural theories of childhood and disability are applied to reflect on the power and privilege operating through the research process. Engaging in research that involves children with disabilities, in which discourses of risk, stigma, and protection are elevated, problematizes the researcher–researched relationship and expands considerations of what constitutes ethical practice and ‘valuable data’.

KEYWORDS:

• Attention-deficit/hyperactivity disorder (ADHD)
• childhood
• ethics
• ethnography
• school-based research

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Leigh Adams Tucker is a clinical psychologist currently completing her doctoral research through the discipline of psychology at the University of KwaZulu-Natal, South Africa. Leigh's research focuses on young boys’ subjectivities within the context of an attention-deficit/hyperactivity diagnosis. Her professional experience in the research field extends to issues of youth, gender, HIV/AIDS, and sexuality education. Leigh also consults in her private practice and is involved in the professional development and teaching of psychology students.

Kaymarlin Govender is a research psychologist with an MA from the University of KwaZulu-Natal and a DLitt et Phil from the University of South Africa. He has served as director of research at the Health Economics HIV and AIDS Research Division (HEARD) since 2011, and continues to hold a partial appointment in the School of Psychology, University of KwaZulu-Natal. Kaymarlin's body of research focuses largely on psychological, social and behavioural issues related to HIV and AIDS, with a special focus on risk and resiliency issues facing youth. His recent field of interest is in masculine identities and implications for risk behaviours.

Notes

1. The United Nations Convention on the Rights of the Child (UNCRC, 1989) stipulates 18 years as the demarcation between childhood and adulthood. In this paper, childhood is regarded as a social construct, where the boundaries of age are less clearly defined.

2. ‘People-first’ terminology is employed in this paper. The term disability is favoured over impairment in acknowledgement of the social model of disability.

3. The term ‘production’ is favoured over ‘collection’ to highlight the researcher's role in shaping the data.

4. Prior to the 1994 democratic processes in South Africa, state-funded schooling was racially segregated with White learners receiving education through Model C Schools. Although these systems have been disbanded, former Model C schools continue to maintain better infrastructure and facilities.

Additional information

Funding

The authors acknowledge the support of the University of KwaZulu-Natal and the National Research Foundation (NRF).