Children as partners with adults in their medical care

Aims: To investigate the seldom published views of children with type 1 diabetes about their condition and ways in which they share in managing their medical and health care with adults. Methods: Semi-structured, tape recorded interviews, during 2003, with a purposive sample of 24 children aged 3–12 years who have type I diabetes and who attend two inner London hospitals and one hospital in a commuter town. Results: The children reported high levels of understanding, knowledge, and skill gained from their experience of living with diabetes and constantly having to take account of the condition and their paediatrician’s guidance. Their key goals were to be “normal” and “just get on with their lives”. Discussion: The interviews showed that children’s experiences of diabetes tended to enable them to make informed, “wise” decisions in their own best interests, even at a young age. They achieved a complicated balance between the sometimes competing goals of social health “being normal” and physiological health in controlling glycaemia. Their competence supports approaches in children’s rights and in policy makers’ aims that people with diabetes—including children—gain more knowledge, skills, and responsibility for their own care in partnership with healthcare professionals. Consent is usually considered in relation to surgery; however the children showed how they constantly dealt with decisions about consent or refusal, compliance with, or resistance to their prescribed treatment. Their health depends on their informed commitment to medical guidance; more research is needed about the daily realities of children’s committed and responsible co-management of their chronic illness

Review essay: justice, rights, agency and childhood research.

The three books in this review are very different, but they illuminate one another in sharing strong themes of justice, rights and agency. Two books by lawyers on justice and mercy and on liberty and equality are linked to a book by a sociologist on children and agency. The review considers how practitioners, policy makers and researchers can work together to promote children’s rights to justice and liberty

International human rights, citizenship education, and critical realism

Citizenship education invokes dilemmas even for the most committed teachers and students, researchers, and innovators. How can citizenship education advance equity and equal rights within highly unequal schools and societies? How can it support young people to feel they have the competence, confidence, and right to vote and to challenge injustice? How can we be sure international human rights are realities, not merely passing ideologies? This paper argues that rights really exist as expressions of visceral embodied human needs and moral desires that are integral to human relationships. Rights also serve as powerful legal structures that can help to prevent and remedy wrongs, and they work as enduring high standards and aspirations. The paper suggests how critical realism can help educators to resolve dilemmas in theoretical education about rights as knowledge, principles, and mechanisms, and in practical education that enables students to enjoy and exercise their rights and respect those of other people

Informed consent: ideal or reality?

Is it ever possible to give informed consent to treatment or research? Are the standards of consent set by ethicists and lawyers too high for ordinary people to reach? Should these standards be abandoned or modified? These questions are discussed in this paper mainly in relation to the extensive literature on consent in medicine, with examples about consent to children's treatment and research which raise extra dilemmas. Paradoxical meanings are considered: consent as an informed correct choice or a courageous best guess, and autonomy as isolated, uncompromised freedom or reasonably uncoerced self-realisation. Beyond being informed, consent involves evaluating, making and signifying a decision. It is better understood as a process than an event, in which reasoned understandings can be complemented by emotional insights. Ethical and legal standards of voluntary consent, although partly an unrealistic ideal, provide important guidelines for people who request and give consent to research

Do children become patients by medical diagnosis or economic status?

This article identifies eight groups of children: those who are mainly healthy who become child patients, or mainly ill children who are denied health care. The article questions whether children become patients through medical diagnosis or economic influences, and seeks to explain seemingly illogical international patterns in child health and illness