London, UK: Teenagers and young adults with cancer are not always cared for appropriately because a lack of specialist training for nurses means that staff are not necessarily equipped to recognise and meet the unique needs of this age group, according to a nurse manager at the Manchester Teenage Cancer Trust Unit.
Miss Sam Smith told a news briefing at the TCT's 4th International Conference on Teenage and Young Adult Cancer Medicine: "Until the fundamental training needs of nursing staff are addressed, the unique needs of teenagers and young adults with cancer will continue to be unrecognised. Nurse education in this area is vital to the development of knowledge and expertise in caring for this group, and to the important recognition of teenage and young adult (TYA) cancer as a speciality in its own right. Such recognition is essential if the NHS is to respond appropriately to the criteria laid down in the NICE guidance for the treatment of these cancer patients."1
Miss Smith, lead/manager in adolescent oncology at the TCT Young Oncology Unit at the Christie Hospital, Manchester, UK, said that a small number of key healthcare professionals who worked within the TCT units in the UK had been able, over time, to acquire in-depth knowledge and comprehensive expertise in all aspects of care of young people, including disease management, symptom control, and the vast array of psychosocial issues, needs and care, from diagnosis through to the years beyond treatment. However, this was not representative of the knowledge and expertise of nurses nationally who worked with young cancer patients in non-specialist services.
"Within the UK there is minimal nurse education in TYA cancer, and what exists is fragmented. Pre-registration education is virtually non-existent and there is little attention to the needs of teenagers and young adults in general. Post-registration education in adult and paediatric oncology is well established and leads to well-recognised qualifications. However, courses in TYA cancer for the qualified nurse are few and, as yet, there are no recognised qualifications to equal adult and paediatric disciplines," she said.
"This is wrong and inequitable, and it means that many young people do not receive optimum care. This could make a difference to how well they cope with cancer and its treatment, and how well they manage psychologically with the difficulties of suffering from and, in many cases, surviving a life-threatening illness," said Miss Smith.
"There are more teenagers and young people with cancer than there are children with cancer. However, services for young people are way behind paediatric services in terms of the number of specialist facilities and the education of staff within them. In the UK there are still insufficient numbers of specialist TYA facilities and therefore young people continue to be cared for inappropriately in purely paediatric or adult environments, in relatively small numbers dispersed throughout numerous services. Staff in these areas are trained to care for either children or adults, and they lack the expertise in the specialist area of TYA cancer.
"This has detrimental effects on the quality of care young people receive both in terms of staff knowledge and the fact that they are isolated from other young people of the same age going through the cancer journey."
She said that TYA cancer patients have specific needs that needed to be met by experts trained to deal with this age group.
"Throughout all stages of treatment, the adolescent patient is faced with loss of independence and control, and can experience feelings of anger, depression and social withdrawal. A lack of peer support during the cancer experience prevents the adolescent attaining a sense of belonging and identification; acceptance by friends is damaged by the cancer diagnosis and leads to alienation from healthy peers. Patients often feel isolated in general paediatric and adult wards where there is little or no contact with peers. However, sharing wards with patients of the same age group helps to lessen the risk of social withdrawal and depression. Patients prefer to be with their own age groups and with other young cancer patients and can find camaraderie, acceptance and a sense of normality within a TYA Unit."
She said that studies of young people who had been treated in an adult environment showed the negative impact it could have on them. "Adolescents experience situations of 'infringement' in adult care, feelings of 'being a bother' and 'not being taken seriously'.
"Adolescents with cancer frequently highlight the need for time to sit and talk to staff. Studies show that within an adult environment staff spend little time with the adolescent patient. It is unclear whether this is due to inadequate staffing levels or simply an avoidance strategy. However, there is evidence to suggest that staff within adult environments have insufficient understanding on strategies of care that meet the psychosocial needs of the adolescent patient, including failure to recognise adolescent coping mechanisms.
"It is my belief that every teenager and young adult should, where possible, be treated in a specialist unit staffed by professionals with expertise and experience. Furthermore, all young people diagnosed with cancer should have access to the complex psychosocial support mechanisms that is their absolute right to receive."
Notes: [1] National Institute for Health and Clinical Excellence (NICE) issue new guidance in August 2005 on the treatment of teenagers and young adults with cancer.