Will I be able to have a baby?' Results from online focus group discussions with childhood cancer survivors in Sweden (original) (raw)
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European Journal of Cancer Care
Understanding the reproductive and fertility concerns of teenagers and young adults with cancer (TYA) is one aspect of comprehensive age appropriate care. However, limited options for fertility preservation, coupled with vague policy recommendations, give rise to variations in information-sharing between health care professionals and TYAs, particularly as it involves sensitive discussions regarding the short-and long-term effects of cancer and treatments on fertility and reproduction. This paper presents findings from a wider evaluation at a specialist unit for TYAs with cancer. Forty people participated in semi-structured interviews, including 20 young people, parents and partners. Young people were between 2 months and 4 years from finishing treatment. Most young people received mixed levels of information on fertility and counselling before treatment. Diagnosis in the early teens meant how, and from whom, young people received information varied. Young women tended to receive incomplete information. The majority of young people were unaware of their fertility status after treatment had finished. Findings point to the inherent challenges that exist in ensuring young people aged between 13 and 25 years receive comprehensive information on their fertility and potential risk, as well as advice on how to determine their fertility status after treatment has finished.
European Journal of Cancer Care, 2009
Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult yearse cc_1003 381..390 M.A. CRAWSHAW, phd, senior lecturer, 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.
Journal of Adolescent Health, 2013
Purpose: The goal of this study was to determine healthy adolescents' perceptions of cancer and fertility. A secondary goal of the study was to test items related to the development of a healthrelated quality-of-life tool with healthy control subjects to determine whether the participants shared a common understanding of the items and response options and to confirm face and content validity. Methods: Four focus groups of two age-groups were held with healthy female adolescents: 12-14 years (N ϭ 11) and 15-18 years (N ϭ 14). Results: Adolescents in both age-groups expressed significant concerns regarding potential infertility from cancer treatment, hereditary transmission, and the impact it would have on their future. Differences emerged in language preferences among older adolescents who preferred more openended statements. Conclusions: Fertility concerns and desires for future motherhood can be accurately assessed using the 10 statements tested, and clinicians should be made aware of the differences between younger and older adolescents to facilitate effective communication. This research suggests adolescents have predetermined expectations for becoming future parents, and their concerns about fertility and childbearing are present before becoming a patient.
Acta Oncologica, 2015
background. Being diagnosed with cancer constitutes not only an immediate threat to health, but cancer treatments may also have a negative impact on fertility. Retrospective studies show that many survivors regret not having received fertility-related information and being offered fertility preservation at time of diagnosis. This qualitative study investigates newly diagnosed cancer patients' experiences of fertility-related communication and how they reason about the risk of future infertility. Material and methods. Informants were recruited at three cancer wards at a university hospital. Eleven women and 10 men newly diagnosed with cancer participated in individual semi-structured interviews focusing on three domains: experiences of fertility-related communication, decision-making concerning fertility preservation, and thoughts and feelings about the risk of possible infertility. Data was analyzed through qualitative content analysis. results. The analysis resulted in three sub-themes, 'Getting to know', 'Reacting to the risk' and 'Handling uncertainty', and one main theme 'Women more vulnerable when facing risk for infertility', indicating that women reported more negative experiences related to patient-provider communication regarding fertility-related aspects of cancer treatment, as well as negative emotional reactions to the risk of infertility and challenges related to handling uncertainty regarding future fertility. The informants described distress when receiving treatment with possible impact on fertility and used different strategies to handle the risk for infertility, such as relying on fertility preservation or thinking of alternative ways to achieve parenthood. The negative experiences reported by the female informants may be related to the fact that none of the women, but almost all men, had received information about and used fertility preservation. conclusions. Women newly diagnosed with cancer seem to be especially vulnerable when facing risk for treatmentinduced infertility. Lack of shared decision-making concerning future fertility may cause distress and it is therefore necessary to improve the fertility-related communication targeted to female cancer patients.
We would like to thank all those individuals who have contributed to this study. Most of all, we would like to thank the participants in the study for giving up their time to take part, being so open and thoughtful in sharing their thoughts and experiences and taking such an interest in contributing to the development of services for those that are to face the cancer journey in the future. We hope that we have done justice to what you said to us. Many professionals were also involved-with recruitment, providing help, advice and support to the researchers, producing material for inclusion on the Cancerbackup booklet, transcribing tapes and generously sharing thoughts and ideas. We thank them too. Finally our thanks go to the Candlelighter's Trust without whose funding this study would not have been possible.
Psychology & Health Young women's construction of their post-cancer fertility
Younger women diagnosed with cancer often face compromised fertility as a result of their treatment. However, previous research has adopted a biomedical model of fertility and utilised hypothetico-deductive research methods which have not allowed for full exploration of women's subjectivity. This study explored younger women's construction of their fertility post-cancer, and their discussions of fertility with healthcare professionals, from a social constructionist epistemology. Semi-structured one-to-one interviews were conducted with eight women aged 18-26, across a variety of cancer types. Foucaultian Discourse Analysis identified three subject positions associated with fertility concerns: 'Inadequate woman: Accepting the motherhood mandate'; 'Adequate woman: Resisting the motherhood mandate'; and 'Survival of the fittest: Woman as genetically defective'. Implications of these subject positions included feelings of inadequacy, fear and devastation; feeling undesirable to romantic partners; and concern about passing on cancer-positive genes. In describing healthcare professional interactions, women adopted positions of 'Satisfied patient'; 'Passive recipient patient'; or 'Resisting the passive patient position'. Accounts of inadequate information provision were associated with anger and frustration, whereas feeling adequately informed was associated with satisfaction at making decisions about fertility preservation. These results suggest that fertility is of importance to young women cancer survivors, and that compromised fertility can negatively impact subjectivity.
2007
This thesis considers the impact on growing up among young people diagnosed in their teens with cancer and told that fertility impairment may result. The exploratory study informed by grounded theory recruited seventeen males and twenty-one females (overall take-up 35 per cent). Single in-depth interviews were conducted in two age groups-13 to 21; 21 and over. Five were parents. Findings were considered theoretically within lifespan approaches and resilience theory. Protective or risk factors were identified within the approach of participants or those around themincluding professionals and services, family members, friends and romantic partners. Reactions ranged from being little troubled to deep distress. Strength of desire to parent and the stigma of infertility heightened concerns as did feelings of having little control over fertility outcome. Concerns were easedbut not removedwith the provision of regular, unambiguous information, access to help with strategy building, presence of stored gametes, hope of retention of reproductive function, availability of confidantes including friends and romantic partners, positive experience of disclosure and achievement of parenthood. Across all spheres, fertility matters were raised less frequently than were other cancer matters by participants or those around them. This was only helpful when it reflected protective communication or low concern. The personal and social meaning of fertility matters, including fertile identity implications, appeared more influential than age and life stage and was dynamic across time and context. Gender too carried social as well as biological challenges, including around fertility analysis. Where return to 'normality' was prioritised, fertility concerns were marginalised but presented periodic threats. Although many reported gaining strength through having had cancer none did so in relation to fertility matters. For some, fertility concerns overtook those associated with cancer.
Upsala Journal of Medical Sciences, 2016
Introduction: Fertility counselling for young women newly diagnosed with cancer is an important field of preconceptional counselling. This qualitative, small-scale study explored how young women newly diagnosed with cancer experienced specialized fertility preservation counselling and treatment in the public Danish health care system. Methods: Semi-structured, in-depth interviews were conducted with five women below 40 years recently diagnosed with cancer. All women received fertility counselling by a fertility specialist at the Fertility Clinic, University Hospital of Copenhagen, Denmark before initiation of cancer treatment. Participants were interviewed at a place chosen by them, and interviews were recorded and transcribed verbatim. Data were analysed using systematic text condensation developed by Malterud and inspired by Giorgi's phenomenological analysis. Results: None of the participants were aware that chemotherapy could destroy their eggs. The participants described how specialized fertility counselling and fertility preservation contributed to a belief in life after cancer, which gave them hope that they would survive their cancer disease. Further, the women described how the possibility of fertility preservation removed a huge concern and enabled them to concentrate on their cancer treatment and on getting better. Conclusion: Overall, the specialized fertility counselling and treatment to preserve fertility was highly valued. The women felt it gave them a choice about their future fertility. The fertility expert presented the various fertility-preserving scenarios, and the women were content that they had an actual choice.
The pros and cons of fertility awareness and information: a generational, Swedish perspective
Human Fertility, 2021
Being aware of factors that affect fertility can help people make informed decisions about their reproductive futures. To some, however, fertility information leads to worry and self-blame. In this paper, we explore how people from different generations discuss fertility and reproductive decision-making, along with their perceptions of fertility information. The study was conducted in southern Sweden with 26 focus-group discussions that included a total of 110 participants aged 17-90 years. The material was analysed thematically. Our results show that fertility knowledge and openness to talking about fertility problems have increased over generations. Participants who were assigned female at birth were more often concerned about their fertility than those who were not, and fertility concerns were transferred from mothers to daughters. While age-related fertility concerns had been uncommon in older generations, participants aged 25-40 often expressed these concerns. Young adults appreciated being knowledgeable about fertility but simultaneously expressed how fertility information could lead to distress. Our conclusion is that fertility information was best received by high-school students, and efforts to improve fertility education in schools are therefore recommended.