1: Alex

‘Alex knew that the tablet form of the antiemetic he was prescribed worked better for him as opposed to the intravenous form given through his central line, but the nurses did not listen to him. On one occasion I had to go through all his notes to ‘prove’ his point – that he had been prescribed the tablet form before and to ensure he was always written up for the right thing for him, and not what was usually given without exception to all patients on the oncology ward. I found this type of situation very distressing. I felt I was viewed as a ‘troublemaker’ and wanting to make a special case for Al. Al at this point was not feeling well enough to fight his own corner, but afterwards supported my efforts and told me how upset he had been. Equally, when a bed was not available on the teenage cancer unit of our preference, the nurses on the ward refer to me as ‘mum’ rather than use my name and did not ask Al for his thoughts or talk directly to him about his treatment. Everything about him was directed through me and not him: he felt invisible. For a young person who was completely involved in his treatment plans this was unacceptable. Each young person should be treated as an individual with age appropriate care and consideration given for their level of maturity’.

Alex’s mother

How can health professionals ensure they include young people in care and care decisions?

You may wish to consider:

  • Why were there differences in approaches to care between the children’s oncology ward and teenage cancer unit?
  • What impact could lack of inclusion have on a young person’s experience of involvement in care decisions?
  • What role did Alex’s mother adopt and why?

 

› Suggested answers

In your answers you may have considered the concept of child agency as discussed in the chapter. In contrast to Case Study 1.2, it would appear that, within the children’s unit, children were viewed to lack reasoning and cognitive capacity to make decisions (Valentine, 2011). However, within the teenage cancer unit the development stage of young people was considered, facilitating the involvement of them in their own care. Excluding Alex from care decisions could lead to him experiencing fear and anxiety, reducing his self-esteem. In addition to this the Royal College of Paediatrics and Child Health (RCPCH) (2011) highlight the impact of involving children and young people on the quality of care they receive; therefore if children and young people are excluded from care decisions the quality of their care is compromised. Sarah adopted a libertarian approach as she believed Alex to be capable of making informed choices and so supported him to achieve this. When considering article 12 of the United Nations Convention on the Rights of the Child, children’s nurses have an explicit role in advocating for children, ensuring that children are able to express themselves, voice their opinions and participate in decisions about them (United Nations, 1989).

In this account, Alex’s mother acted as advocate for Alex as nurses were not including him in decisions and meeting his individual needs. When parents do not feel their child’s care is adequate, the literature highlights how parents undertake this role to ensure the young person’s needs are met (Ygge & Arnetz, 2004). Although Alex was usually competent according to his mother’s account, when he was unwell he was unable to communicate his individual care needs. It is important to recognise that children and young people’s competence may intermittently fluctuate based on their current condition. When the child is unable to speak up themselves, listening to parents, who as in Alex’s case understood their child’s care need, is important.

Supporting evidence

Royal College of Paediatrics and Child Health (2011) Involving Children and Young People in Health Services. London: Royal College of Paediatrics and Child Health.

United Nations (1989) United Nations Convention on the Rights of the Child. Geneva: United Nations.

Valentine, K. (2011) ‘Accounting for agency’, Children and Society, 25: 347–358.

Ygge, B.M. and Arnetz, J. (2004) ‘A study of parental involvement in paediatric hospital care: Implications for clinical practice’, Journal of Pediatric Nursing, 19: 217–223.