Poor understanding of the impact of oncofertility matters on cancer recovery, sexuality, life planning and general well-being leads to missed opportunities for multi-disciplinary interventions. Three qualitative studies conducted in the UK with participants including health professionals, teens and adults from mainstream and South Asian backgrounds showed professional attention became limited after cancer diagnosis, leaving many to cope alone.
These studies found that some cancer survivors acted ‘as if fertile’ to regain entry to ‘normal’ life: managing sexual banter; handling romantic relationships; making employment and life plans overshadowed by uncertainty about whether or how parenthood could be included. Some therefore adopted reproductive and sexual health behaviours to meet peer approval rather than medical advice. Oncofertility matters appeared a taboo subject in a society where infertility remains a stigma.
Our findings offered broad brush indicators of where age, gender, ethnicity and religion could affect reactions but meaning remained individual and fluid. Life stage did not map neatly onto chronological age with preferred ages for starting/completing families affected by class, gender and ethnicity. Fertility preservation options heightened female feelings of disadvantage as did the threat of premature menopause and the need for a male partner’s continuing consent to later use of stored embryos. Faith provided comfort for some but not others; some accommodated alternative routes to parenthood such as third party reproduction even where religious teachings forbade them. Stereotyped assumptions of attitudes and behaviors by some professionals based on ethnicity led to inappropriate and insensitive interventions.
The provision of clear, up-to-date information in a variety of formats – written, verbal and digitally – that pays attention to bio-psycho-social framework can help normalize a range of reactions related to infertility. Multi-disciplinary face-to-face interventions can promote resilience and lower risk to well-being if fertility issues are raised in a routine, unambiguous and low key way, checking comprehension through paraphrasing and exploration of feelings. To avoid reinforcing the social stigma of infertility, professionals should use a strength-based approach to offer belief in the potential for a good quality of life regardless.
The need for multi-disciplinary practices to see oncofertility within a social and emotional lifespan context as well as a medical one is clear. If viewed within the narrow confines of the body as a reproductive system then the risk of needs being ignored, unmet or misunderstood is heightened.
Crawshaw M, Glaser A, Hale J and Sloper P (2009) ‘Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and adult years’ European Journal of Cancer Care 18, 381-390
Crawshaw M and Sloper P (2010) ‘Swimming against the tide’ – the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer European Journal of Cancer Care, 19, 610-620
Atkin, K., Chattoo, S. and Crawshaw, M. (2013) Clinical encounters and culturally competent practice: the challenges of providing cancer and infertility care Policy and Politics DOI: http://dx.doi.org/10.1332/030557312X655675
Crawshaw, M. (2013) Male coping with cancer-fertility issues – Putting the ‘social’ into biopsychosocial approaches Reproductive Biomedicine Online DOI: 10.1016/j.rbmo.2013.04.017
Crawshaw M. (2013) ‘Psychosocial oncofertility issues faced by adolescents and young adults over their lifetime: a review of the research’ Human Fertility 16, 1, pp 59-63
Marilyn is an Independent Researcher and Practitioner and was formerly a Senior Lecturer in Social Work at the University of York where she is now an Honorary Fellow. She has a long standing interest in the field of cancer fertility and of the outcomes of donor-assisted conception, surrogacy and adoption as a practitioner, researcher and author. Marilyn has held various external roles with the UK regulator, the Human Fertilisation and Embryology Authority, was national adviser to UK DonorLink from 2003 until its transfer the Donor Conceived Register in April 2013; is a founder member of British Infertility Counselling Association and edits the Practice Guides series; and chairs the multi-agency UK Project Group on Assisted Reproduction (PROGAR).