Continuation of high levels of distress over time points to the importance of identification of those at risk at an early stage and provision of ongoing support. Implications for such support are discussed.
Discussion and management of potential reproductive health sequelae of adolescent cancer are essential and challenging components of care for the multidisciplinary team. Despite this, research has been limited to specific experiences (e.g. sperm banking) or fertility-related concerns of adult survivors. This grounded theory study of 38 male and female survivors of adolescent cancer aged 16-30 years drew on in-depth single interviews to map the range of experiences of being advised that treatment might affect fertility. Strong support for being told at around diagnosis was found regardless of gender, age, incapacity or availability of fertility preservation services. Age and life stage appeared less significant for impact than the perceived level of threat to personal and social well-being. Women were more likely to achieve lower levels of comprehension about the physiological impact, to report later distress from lack of fertility preservation services and to revisit more frequently those decisions made by the few offered fertility preservation. Men found decision making about sperm banking straightforward on the whole and reported satisfaction with having the choice regardless of outcome. Findings suggest that young people can cope with this information alongside diagnosis especially when professional and parental support is proportionate to the particular impact on them.
Existing research provides useful information for organizations developing multi-agency services. However, there is a need for methodologically sound research which investigates the outcomes of different models of multi-agency working in services for children, includes assessment of cost effectiveness, and explores the ways in which the factors identified as facilitating multi-agency working relate to outcomes.
Psychosocial research into cancer-related fertility has concentrated on fertility preservation or adult survivors' concerns. This study reports on its hitherto unreported impact over the time from diagnosis to survivorship. Thirty-eight men and women aged<30, diagnosed as teens, were recruited to an exploratory qualitative study. Analysis used the constant comparison method, considered conceptually within a lifespan approach. Four key experiences of managing fertility matters influenced, or were influenced by, the aftermath of cancer treatment: (1) prioritising 'normality' and marginalising fertility; (2) fertility concerns compromising 'normality'; (3) ongoing impairments/health concerns mediating fertility matters; (4) fertility concerns dominating the cancer legacy. Professional and social networks provided few opportunities to ask questions, receive information, process feelings or develop handling strategies. Beliefs about the extent of fertility damage did not necessarily relate to information received. For some, fertility matters affected identity, well-being and life planning as well as reproductive function. This was not restricted to particular ages, life stages, gender or time since treatment ended and was heightened by associated stigma and silence. Opportunities for dialogue should be offered regularly across health and social work disciplines given fertility's psychological and social as well as medical significance.
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