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control when they are involved in discus- sions that concern their condition. Effective communication is crucial to therapeutic relationships with adoles- cents; actively listening to the message they are trying to get across is vitally important. Parents of any adolescent, including adolescents with life-limiting conditions, can find communication dif- ficult. It is important to keep channels of communication open and let the ado- lescent patient know that the parent is available when needed. 3 In a US study by Britto et al 10 it was found that the majority of healthcare professionals underestimated the impor- tance of communication to the adolescent patient. This shows that adolescents want to be given the information but still want support in making vital decisions around their end of life care. A study by Lyon et al 11 supports this finding and reports that 96% of adolescents with a life-limiting condi- tion wanted to be involved in a ‘shared choice’ environment when it came to deci- sions about their care. Legally, providing information to chil- dren is not required. Only in Germany are adolescents consulted and required to
Adolescents who are dying still undergo the same mental development and often still experience independence and rela- tionships for the first time. Their illness and impending death can greatly interfere with this, leaving them to ask questions like ‘what’s the point of having a girlfriend/ boyfriend?’ or saying things like ‘nobody is going to want to be with me’. 12 Health- care professionals must be aware of this when making conversation and be careful not to make throwaway remarks like ‘I bet you have all the girls after you’, as this can cause upset. As part of their investigation, Jalmsell et al 13 spoke to bereaved parents and found that parents who had spoken about death with their children felt no regret about it, while many parents who did not have the discussion regretted not doing so. Jacobs et al 14 found that, by and large, adoles- cents with a terminal prognosis want to be involved in discussions about their end of life care and would prefer to be told that they are dying. Tyrone Horne is a clinical nurse co-ordinator for children with life-limiting conditions at Cork University Hospital
consent to clinical trials. Even in the 1970s healthcare professionals were writing about the importance of sharing informa- tion with adolescents who have a terminal prognosis. Although adolescents in Ireland are not legally recognised as being able to make choices around end of life issues, this cohort often have a deep understanding of and a realistic outlook on their med- ical situation. Adolescents with a long term illness are often more well-adjusted socially than their healthy counterparts. The fourth International Children’s Palliative Care conference will take place at NUI Galway on November 21-22, 2019. Dr Helen Kerr from Queen’s University Belfast will speak about the many interventions that can be used to support the difficult transition from child to adult care, an area she and her colleagues have researched extensively. 15 The conference, entitled ‘Contemporary Challenges in the Care of Children with Complex and Palliative Care Needs’, will be of interest to nurses who work with such patients. For more information visit www.cpcconf.ie Children’s palliative care conference
References available on request.Email nursing@ medmedia.ie (quote Horne WIN 2019: 27 (9): 50-51)
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