In social work, when a person needs to be supported or represented by another – be it voluntarily or by compulsion, permanently or for a limited time – questions on autonomy, integrity, and rights are raised. In particular, representation has implications for the relationship between the person being represented, the representative, and the social worker or service provider. While legal reforms on support and representation have been performed in the Nordic countries the last decade, the views from those being represented, i.e. their needs and wishes on different forms of representation, have not been prominent. Using this as a starting point, this literature review explored previous research on experiences of people represented by others, e.g., people with intellectual disability, people with mental illness, and children needing representation by a third party The literature review encompassed relevant studies using qualitative, quantitative, and mixed methods, and a range of policy and legal areas. Four databases were used in the search process (Academic Search Complete, ASSIA, SocIndex, and Sociological Abstracts). Based on inclusion criteria, eight articles were included in this review, encompassing experiences of people with intellectual disability, people with mental illness, and children needing representation by a third party. Two recurrent themes relevant for social work were identified: the balance between protecting and violating rights, and the importance of lasting and trusting relationships between the person being represented and the person representing. The review revealed a need for more social work research, not least from a Nordic perspective, reflecting the experiences  of people being represented. 

Sweden was the first country in the world banning corporal punishment in 1979, protecting children’s physical and mental integrity. Forty years later, this fundamental view on children’s rights, respecting the child’s integrity, has not had any effect in Swedish health and medical care when children are patients. In this article, children’s rights when the child is a patient will be discussed in relation to the Swedish Patient Act (pa, 2014:81) and the advocacy role of Swedish patient organisations. It is shown that children’s rights in the Patient Act are constructed based on the child patient as deviant and subordinated to adult patients and parental rights, making not only the child’s voice subject to valuation by adults, but also the child’s integrity. Further, the patient organisations, acting as advocates for different patient groups in the legislative process, stay silent on issues concerning child patients’ basic human rights.

According to the Swedish Patient Act (2014:821) the patient’s autonomy and integrity is to be respected. But how is this to be understood in relation to child patients? With the Patient Act, provisions directed to child patients have come into force. That is, a provision stating the best interest of the child (PA Ch. 1, Sec. 8) and a provision stating that when the patient is a child, information should be given to the custodians as well (PA Ch. 3, Sec. 3). Also, a provision stating that the child’s view on the care and treatment in question should be clarified and taken into consideration in relation to age and maturity (PA Ch. 4, Sec. 3). This provision is complementary to a provision stating that care and treatment cannot be enforced without the consent of the patient (PA Ch. 4, Sec. 2). In the article three concepts are discussed: sufficently mature, the best interest of the child and the custodians’ decision-making power. These concepts are used in the preparatory work of the Patient Act, framing children’s rights and giving these rights meaning in relation to child patients. It is argued that these concepts give child patients both a vague and a weak legal position in the Patient Act, having negative consequences for the protection of the integrity of the child. In order to strenghten children’s rights and legal position as patients, it is suggested that the consent provision in the Patient Act also should encompass children.

Enligt den svenska patientlagen (2014:821) ska patientens autonomi och integritet respekteras. Men hur ska detta förstås när patienten är ett barn? I och med patientlagen har tre bestämmelser som rör barn som är patienter, trätt ikraft. Det gäller en bestämmelse om barnets bästa (1 kap. 8 §), en bestämmelse om att när patienten är ett barn ska även barnets vårdnadshavare få information (3 kap. 3 §) samt en bestämmelse om att barnets inställning till vård och behandling ska klarläggas och tillmätas betydelse i förhållande till barnets ålder och mognad ( 4 kap. 3 §). Bestämmelsen om att barnets inställning ska klarläggas är ett komplement till den samtyckesbestämmelse i lagen som anger att vård och behandling inte får ges utan patientens samtycke (4 kap. 2 §). I artikeln diskuteras hur begreppen tillräcklig mognad, barnets bästa och vårdnadshavares bestämmanderätt används i förarbetena till patientlagen. Det är begrepp som ger barns rättigheter innebörd och som sätter gränser för dessa rättigheter. Barn ges både en oklar och svag rättslig ställning som patienter i lagen, vilket har negativa konsekvenser för skyddet av barns integritet. För att stärka barns rättigheter och rättsliga ställning som patienter, väcks i artikeln frågan om inte samtyckesbestämmelsen i patientlagen också ska omfatta barn.

This thesis explores discourses regarding children’s voice, in the Swedish Patient Act, as well as in Swedish patient organizations. In the Patient Act, children’s rights as patients are construed on the basis of custodians’ parental rights and the assumption that patients are competent and autonomous adults. The child is given an object position, weaker than an adult patient and subordinated to parents’ authority. Consequently, the integrity of the child is not absolute, as it is construed through an autonomy discourse and a family discourse which set boundaries for the child´s voice in the Patient Act. The family discourse combined with a mass movement discourse form the prerequisits for children’s voice in the context of patient organizations. As a consequence, patient organizations do not act as voice in relation to children’s rights as patients, in the Patient Act. Rather, interviews with representatives of patient organizations show that the parents act as voice having a child in need of health care. The position of children in the organizationsis ambiguous and, rather than having a voice of their own, children can be used in advertising campaigns to attract funding, expressing the voice of the organization. When children are used in this way by organizations, children’s integrity seem to be negotiable. The thesis shows that in both the Patient Act and the patient organizations, the integrity of the child is questioned. Children seem to be regarded as imperfect rights-holders and as imperfect members of society.This perception of the child is traced to dominant ethical perspectives from which children’s human rights have emerged. Drawing on current academic debates, analternative approach to these prevailing ethical perspectives is suggested. Instead of making rights conditional upon presumed autonomy and adulthood, rights can be perceived as relational and expressions of the mutual interdependence of humans, regardless of age and maturity. If rights are seen in this way, with children being understood not as essentially different but differently equal, then the child´s voice can have actual importance.