Young men, cancer and fertility: health workers highlight complex area
Posted on 7 June 2004
How well do health professionals deal with young men, some as young as 13, who have just been told they have cancer and that, as a consequence, their fertility may be affected?
Research at the University of York has found a patchy picture in this difficult and complex area.
Sperm storage has only been offered in recent years to teenagers following a diagnosis of cancer, and there was no known research into how the teenagers feel or how healthcare professionals deal with the situation.
Decisions have to be made when the youngsters can be in a state of shock after the diagnosis, and the topic can be embarrassing and cause anxiety.
The York study was conducted by a research team headed by Marilyn Crawshaw and Professor Tricia Sloper from the University's Department of Social Policy and Social Work. It looked at the wide-ranging and sensitive issues that arise in the decision making and sperm banking process and afterwards.
It revealed a patchy picture of the way teenagers are informed about the important decision they will have to make. The manner and circumstances in which the young men were told what their options were, the degree of privacy they had, and their understanding of the consent process, were mixed. The young men said they would have welcomed more information on the potential effects of treatment on their fertility and relationships, as well as on the process and cost of using assisted conception treatments in the future.
Few knew who to approach for information, and although they had good relationships with consultants and social workers, often found the topic too difficult to approach directly. Ms Crawshaw said: "Feeling embarrassed was a common and lasting reaction, but was eased where staff appeared comfortable, used humour, paid attention to privacy, and showed kindness and compassion."
The research team interviewed 22 medical and social work professionals, conducted a postal survey of UK regional paediatric oncology centres and assisted conception units, and held a feasibility study to see how young men at two regional paediatric oncology centres and their parents felt about being offered sperm storage.
The young men needed to decide, often at short notice, whether they wished to store their sperm before treatment in order to have children at a later date. Although they are still minors, only the young men themselves can make this decision, although their families can be, and typically are, involved in the discussions.
The decision is not an easy one, and sensitivity on the part of the health and social work professionals - specialists in paediatric oncology, reproductive medicine, nursing, reproductive science and social work - is crucial.
However, the professionals who took part in the survey felt they needed greater knowledge and relevant skills. They said they did not gain enough experience partly because the number of patients offered this service is limited.
Ms Crawshaw said: "The young men and their parents were highly reflective, and had clear ideas about how services could be improved. Certain themes emerged, such as the importance of having choices, the significance of preserving fertility, and communication with professionals and members of the family.
"The young men who took part included a range of ages, ethnicity, education, living arrangements, type of cancer, length of treatment, and prior disability."
Ms Crawshaw added: "The lack of appropriate training about legal and consent guidelines and processes involved, were highlighted as problems by all the professional groups we interviewed, as was the confusion about the professional and legal responsibilities. Many felt that services needed to be improved in this potentially difficult area."
Ms Crawshaw said that greater attention needed to be given now to the small but intensely important details such as how to begin the discussion about sperm storage with the patient, how to involve parents appropriately, and when and how to raise the subject again afterwards.
The pilot study was funded by the NHS Executive Northern and Yorkshire region.
A three-year study is now underway including two mixed gender groups of cancer patients and survivors, one of teenagers and one of people in their mid to late twenties. The study will also ask patients, parents and professionals for help in developing written materials.
Notes to editors:
- Marilyn Crawshaw's research interests lie in the impact of people's relationship to their health (in particular their reproductive health) and/or impairment on their social lives and vice versa, and the ways in which professionals and service agencies make use of knowledge in their services.
- The Department of Social Policy and Social Work has an interdisciplinary approach that encompasses interests including the delivery of social and health services to all age groups, the management of public services, crime, social exclusion, the impact of digital technologies, racism, the politics of policy, human rights, and globalisation