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STUDY QUESTION What are the experiences of same-sex mothers following identity-release sperm donation regarding equal treatment in society, parenting stress and disclosure to child? SUMMARY ANSWER Mothers predominantly reported equal treatment in society, low levels of parenting stress and early disclosure of the donor conception to the child, and half of the couples had also informed the child of his/her right to obtain the donor’s identity. WHAT IS KNOWN ALREADY The number of two-mother families is increasing, and previous studies have reported about challenges related to heteronormativity, discrimination and the status of the non-birth mother. Same-sex mothers have been found to disclose the child’s donor conception earlier than different-sex parents, but little is known regarding disclosure of the child’s right to obtain identifying information about the donor. STUDY DESIGN, SIZE, DURATION The present study concerns the fourth wave of data collection of a nation-wide longitudinal study. A total of 143 same-sex mothers (73% response rate) following identity-release sperm donation completed individual surveys when their donor-conceived child had reached age 7. These women represent a total of 82 couples who had undergone sperm donation treatment. PARTICIPANTS/MATERIALS, SETTING, METHODS The study is part of the longitudinal Swedish Study on Gamete Donation (SSGD). Couples accepted for gamete donation treatment at seven Swedish University hospitals were recruited between 2005 and 2008 and were requested to complete postal surveys during four waves of data collection. The present study sample includes same-sex mothers who completed a survey when their donor-conceived child had reached 7 years of age. Data were collected with the Swedish Parenting Stress Questionnaire (SPSQ), and study-specific items on experiences of treatment in society and disclosure behavior. Group comparisons (birth mothers vs non-birth mothers) were conducted using Chi2-tests, independent t-tests and Mann–Whitney U-tests, and written comments provided for open-response items were analyzed by qualitative content analysis. MAIN RESULTS AND ROLE OF CHANCE The mothers were generally open about the child’s donor conception and the large majority (>80%) reported being treated positively and in the same way as other parents. However, satisfaction with treatment in health care settings was significantly lower than that reported in contacts with the child’s school and recreational activities (P LIMITATIONS, REASONS FOR CAUTION The present study was performed within the context of the Swedish legislation on identity-release donation, which limits the generalizability to same-sex couples using anonymous or known sperm donors. Although no evidence of attrition bias was found, it is possible that those couples who initially declined participation in the SSGD (23%) or dropped out at the fourth wave of data collection (27%) differ from the study sample in terms of variables that we were unable to control for. WIDER IMPLICATION OF THE FINDINGS The present finding that most same-sex mothers in a population-based sample experience equal treatment in society is encouraging and validates previous results from predominantly qualitative studies. Nevertheless, the fact that a subgroup experiences discrimination and less favorable treatment indicates that further action is needed, particularly in child health care settings. The present study is the first to report on the timing of parents’ disclosure of the child’s right to identifying donor information and suggests that disclosure during preschool ages is feasible and does not appear to be related to negative consequences. In view of the increased availability and use of identity-release donation, there is a pressing need to investigate parents’ intentions, behaviors and needs with regard to talking with their child about his/her opportunity to obtain the donor’s identity. STUDY FUNDING/COMPETING INTEREST(S) Financial support from the Swedish Research Council (2013-2712) and the Swedish Research Council for Health, Working Life and Welfare (2014-00876). There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER N/A.

Endocrine complications are a common late effect after childhood cancer. Our study assessed the prevalence and predictors of premature ovarian insufficiency (POI) and prospects of pregnancy in young female survivors. This nationwide study combined registry and survey data for female childhood cancer survivors aged 19 to 40 years, identified through the National Quality Registry for Childhood Cancer in Sweden. Of 1989 approached young women, 1333 (67%) participated by completing a survey. Median age at diagnosis 1981 to 2017 was 6 (range 0-17) and at study 28 (19-40) years. There were two indicators of POI, induced puberty reported in 5.3% and estrogen replacement therapy (ERT) in 9.3% at assessment. In separate logistic regression analyses (P

Objective: To determine the prevalence of sexual dysfunction and to identify the factors associated with sexual dysfunction in young adult childhood cancer survivors. Methods: All survivors of childhood cancer (aged 19-40 years) in Sweden were invited to this population-based study, and 2546 men and women (59%) participated. Sexual function was examined with the PROMIS Sexual Function and Satisfaction Measure. Logistic regression was used to assess the differences between survivors and a general population sample (n = 819) and to identify the factors associated with sexual dysfunction in survivors. Results: Sexual dysfunction in at least one domain was reported by 57% of female and 35% of male survivors. Among females, dysfunction was most common for Sexual interest (36%), Orgasm -ability (32%) and Vulvar discomfort -labial (19%). Among males, dysfunction was most common for the domains satisfaction with sex life (20%), Sexual interest (14%) and Erectile function ( 9%). Compared with the general population, male survivors more frequently reported sexual dysfunction in >2 domains (OR = 1.67, 95% CI: 1.03-2.71), with an increased likelihood of dysfunction regarding Orgasm -ability (OR = 1.82; 95% CI: 1.01-3.28) and Erectile function (OR = 2.30; 95% CI: 1.18-4.49). Female survivors reported more dysfunction regarding Orgasm pleasure (9% versus 5%, OR Z 1.86; 95% CI: 1.11-3.13). A more intensive cancer treatment, emotional distress and body image disturbance were associated with sexual dysfunction in survivors. Conclusions: The findings underscore the need for routine assessment of sexual health in follow-up care of childhood cancer survivors and highlight that those treated with more intensive cancer treatment and who experience concurrent psychological concerns may benefit from targeted screening and interventions. 2021 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

Background Exchanging experiences of patient and public involvement (PPI) can bring insights into why, how and when PPI is most effective. The aim of this study was to explore the experiences of patient research partners (PRPs) and researchers engaged in a co-creative long-term collaboration in cancer research. Methods The aim and procedures of this study were jointly decided upon by PRPs and researchers. The PRPs included former patients treated for cancer and significant others of the same target group. The participants (11 PRPs, 6 researchers) took part in semi-structured telephone interviews. The interviews were analysed using qualitative content analysis by a researcher who had no prior relationships with the participants. Results Five overarching categories were identified: Reasons for investing in a long-term collaboration, Benefits of participating, Improving the research, Elements of success and Challenges and ways to improve. Reasons for investing in the collaboration included the desire to improve cancer care and to make use of own negative experiences. Benefits of participating included a positive impact on the PRPs’ psychosocial adjustment to the illness. Moreover, the researchers highlighted that working together with the PRPs made the research feel more meaningful. The participants reported that the collaboration improved the relevance and acceptability of the research. Having a shared goal, a clear but yet accommodating structure, as well as an open and trustful working atmosphere were recognised as elements of success. The PRPs furthermore emphasized the importance of seeing that their input mattered. Among the few challenges raised were the distance to the meeting venues for some PRPs and a limited diversity among participants. Conclusions This study identified factors essential to researchers and clinicians attempting to engage the public in research. Our results suggest that for successful patient involvement, the purpose and format of the collaboration should be clear to both PRPs and researchers. A clear but yet accommodating structure and keen leadership emerged as key factors to create a sense of stability and a trustful atmosphere. Furthermore, providing regular feedback on how PRPs input is implemented is important for PRPs to stay committed over time.

Background Self-reported sex problems among women diagnosed with reproductive and nonreproductive cancers before the age of 40 are not fully understood. This study aimed to determine sexual dysfunction in young women following a cancer diagnosis in relation to women of the general population. Furthermore, to identify factors associated with sexual dysfunction in women diagnosed with cancer. Materials and Methods A population-based cross-sectional study with 694 young women was conducted 1.5 years after being diagnosed with cancer (response rate 72%). Potential participants were identified in national quality registries covering breast and gynecological cancer, lymphoma and brain tumors. The women with cancer were compared to a group of women drawn from the general population (N = 493). Sexual activity and function were assessed with the PROMIS (R) SexFS. Logistic regression was used to assess differences between women with cancer and the comparison group, and to identify factors associated with sexual dysfunction. Results The majority of the women with cancer (83%) as well as the women from the comparison group (87%) reported having had sex the last month (partner sex and/or masturbation). More than 60% of the women with cancer (all diagnoses) reported sexual dysfunction in at least one of the measured domains. The women with cancer reported statistically significantly more problems than women of the comparison group across domains such as decreased interest in having sex, and vaginal and vulvar discomfort. Women with gynecological or breast cancer and those receiving more intense treatment were at particular high risk of sexual dysfunction (>= 2 domains). Concurrent emotional distress and body image disturbance were associated with more dysfunction. Conclusion The results underscore the need to routinely assess sexual health in clinical care and follow-up. Based on the results, development of interventions to support women to cope with cancer-related sexual dysfunction is recommended.

Research question: Is there a relationship between disclosure and psychological adjustment in heterosexual-couple families following oocyte donation and sperm donation when the child is 7 years old? Design: This was a cross-sectional study of heterosexual couples with 7- to 8-year-old children conceived with identity-release oocyte donation (n = 83, response rate 56%) or sperm donation (n = 113, response rate 65%). Participants individually completed instruments for the assessment of parents’ emotional distress (HADS), parenting stress (SPSQ) and relationship quality (ENRICH), and their child's psychological adjustment (SDQ-Swe) and reported whether they had talked with their child about their donor conception. Results: About half of parents had talked with their child about their donor conception (oocyte donation 61%, sperm donation 58%). Separate analyses for mothers and fathers showed no main effects of disclosure or type of donation on the outcomes, nor were there any interaction effects. Overall, mothers and fathers in oocyte donation and sperm donation families were found to be well adjusted, reporting within-normal range levels of anxiety, depression and parental stress, and a high relationship quality. The children were well adjusted, with low levels of emotional and behavioural problems. Conclusions: Overall, the present results confirm previous research indicating that early disclosure of the donor conception to children is not associated with negative outcomes for parents or children. Heterosexual couples using oocyte or sperm donation should be informed that disclosure when the child is 7–8 years old is not detrimental to the psychological adjustment of families.

STUDY QUESTION What characterizes the group of donor-conceived (DC) individuals who request information about their identity-release sperm donor in Sweden, and what are their experiences of disclosure, information receipt and donor contact? SUMMARY ANSWER Following three decades of identity-release donation in Sweden, few DC individuals have requested donor information with varying experiences of information receipt and donor contact. WHAT IS KNOWN ALREADY In 1985, Sweden was the first country worldwide to enact legislation that gave DC individuals the right to obtain identifying information about their donor. Since then, identity-release gamete donation has become available in many countries but there is limited knowledge about the individuals who request donor information. STUDY DESIGN, SIZE, DURATION A nation-wide cross-sectional survey study was performed at all seven University hospitals that provided donation treatment in Sweden during 1985–2002. During this period only donor insemination to heterosexual couples was permitted. Inclusion criteria were being 18 years of age or older, conceived with donor sperm and having requested information about the donor by December 2020. Recruitment was performed during 2016–2020. PARTICIPANTS/MATERIALS, SETTING, METHODS A total of 60 individuals had requested information about their donor. Of these, 53 were approached and 40 individuals, representing 34 families, accepted study participation (75% response rate). Participants completed a postal survey with the WHO-10 well-being index and study-specific questions about experiences of disclosure, motivations for requesting donor information, receipt of information, as well as intentions and experiences of donor contact. Independent t-test and chi-square tests were used to compare ratings of participants with early and late disclosure. MAIN RESULTS AND ROLE OF CHANCE Of ∼900 DC individuals who had reached adult age, a total of 60 (≈7%) had requested information about the donor. Most of the 40 study participants (78%) made their requests within 2 years after reaching 18 years of age, or following disclosure at later ages (up to 32 years). Several participants had adult DC siblings in the family who had not requested any donor information. All except five participants received identifying information about the donor from the clinic. However, some donors had died or lacked contact information. Among those participants who were able to contact their donor, 41% had done so at the time of the study, while a third of the participants were unsure about potential contact. Several had met the donor in person and a few were in regular contact. About half of the participants had been informed about their donor conception in adolescence or adulthood (age 12–32), and there were significant differences between participants based on age at disclosure. Compared to those with early disclosure, participants with late disclosure were significantly more likely to be dissatisfied with the timing of their disclosure (P = 0.021), to react with negative emotions (P LIMITATIONS, REASONS FOR CAUTION The limited population available for inclusion resulted in a small sample size, despite a high response rate. In addition, men’s lower participation rate must be taken into consideration when interpreting the results. WIDER IMPLICATIONS OF THE FINDINGS The small number of individuals requesting information about their identity-release sperm donor is surprising. While not all DC individuals appear to be interested in donor information, it is reasonable to assume that some are unaware of their donor conception and thus unable to make informed decisions regarding their genetic origins. During the coming years, young women and men in many countries will become eligible to access identifying information about their donor. In order to meet the needs of these individuals, and to support positive outcomes for all involved parties, it is essential that adequate protocols and resources are developed. STUDY FUNDING/COMPETING INTEREST Financial support from The Swedish Research Council. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER N/A.

BACKGROUND Threatened fertility following cancer diagnosis in the reproductive age may severely impact emotional and psychosocial well-being in survivorship. Effective web-based interventions for fertility-related distress have been lacking. OBJECTIVE This study aims to test whether the Fertility and Sexuality following Cancer (Fex-Can) intervention is superior to standard care in reducing fertility-related distress and related psychosocial outcomes in young adults with cancer. METHODS This randomized controlled trial evaluated a 12-week, web-based, automated self-help intervention for fertility-related distress following cancer—Fex-Can Fertility. Individuals were identified via Swedish national quality registries, and those reporting fertility-related distress 1.5 years after diagnosis were invited. A total of 100 women and 24 men (aged 19-40 years) answered self-administered surveys at baseline (T0), directly after the intervention (T1), and 3 months later (T2). The main outcome was fertility-related distress, which was measured by using the 6-dimension Reproductive Concerns After Cancer (RCAC) scale. The secondary outcomes were health-related quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire), emotional distress (Hospital Anxiety and Depression Scale), fertility-related knowledge, and fertility self-efficacy. In addition, the intervention group (IG) reported self-perceived changes in problems related to fertility after cancer (T1). 2-tailed t tests and linear mixed models, including intention-to-treat and subgroup analyses, were performed to compare the effects of the intervention with those of standard care. RESULTS Although 62% (31/50) of the participants in the IG stated that their concerns about fertility were fewer after the intervention, there were few statistically significant group differences in the main outcome (RCAC) at T1 and T2. Compared with controls, the IG rated lower distress concerning the dimension child’s health at T2 (P=.003; effect size [ES]=0.64). This difference was maintained when adding group and time interactions (intention-to-treat: P=.003; ES=0.58). The IG also had better self-perceived cancer-related fertility knowledge at T1 (P=.05; ES=0.35) and T2 (P=.01; ES=0.42) than the control group. Subgroup analyses based on dose or adherence and baseline RCAC scores did not substantially alter these results. Overall, the use of the web-based program was low. CONCLUSIONS The Fex-Can intervention had small to moderate positive effects on cancer-related fertility knowledge and distress related to child’s health. The lack of group differences in other dimensions of fertility distress and related secondary outcomes contrasted with reports on self-perceived improvement after the intervention. The Fex-Can Fertility program may be a useful complement to routine psychosocial support in the clinical care of young women and men with cancer. CLINICALTRIAL ISRCTN Registry 36621459; https://www.isrctn.com/ISRCTN36621459

Threatened fertility following cancer diagnosis in the reproductive age may severely impact emotional and psychosocial well-being in survivorship. Effective web-based interventions for fertility-related distress have been lacking.This study aims to test whether the Fertility and Sexuality following Cancer (Fex-Can) intervention is superior to standard care in reducing fertility-related distress and related psychosocial outcomes in young adults with cancer.This randomized controlled trial evaluated a 12-week, web-based, automated self-help intervention for fertility-related distress following cancer-Fex-Can Fertility. Individuals were identified via Swedish national quality registries, and those reporting fertility-related distress 1.5 years after diagnosis were invited. A total of 100 women and 24 men (aged 19-40 years) answered self-administered surveys at baseline (T0), directly after the intervention (T1), and 3 months later (T2). The main outcome was fertility-related distress, which was measured by using the 6-dimension Reproductive Concerns After Cancer (RCAC) scale. The secondary outcomes were health-related quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire), emotional distress (Hospital Anxiety and Depression Scale), fertility-related knowledge, and fertility self-efficacy. In addition, the intervention group (IG) reported self-perceived changes in problems related to fertility after cancer (T1). 2-tailed t tests and linear mixed models, including intention-to-treat and subgroup analyses, were performed to compare the effects of the intervention with those of standard care.Although 62% (31/50) of the participants in the IG stated that their concerns about fertility were fewer after the intervention, there were few statistically significant group differences in the main outcome (RCAC) at T1 and T2. Compared with controls, the IG rated lower distress concerning the dimension child's health at T2 (P=.003; effect size [ES]=0.64). This difference was maintained when adding group and time interactions (intention-to-treat: P=.003; ES=0.58). The IG also had better self-perceived cancer-related fertility knowledge at T1 (P=.05; ES=0.35) and T2 (P=.01; ES=0.42) than the control group. Subgroup analyses based on dose or adherence and baseline RCAC scores did not substantially alter these results. Overall, the use of the web-based program was low.The Fex-Can intervention had small to moderate positive effects on cancer-related fertility knowledge and distress related to child's health. The lack of group differences in other dimensions of fertility distress and related secondary outcomes contrasted with reports on self-perceived improvement after the intervention. The Fex-Can Fertility program may be a useful complement to routine psychosocial support in the clinical care of young women and men with cancer.ISRCTN Registry 36621459; https://www.isrctn.com/ISRCTN36621459.

This qualitative interview study sought to gather and better understand heterosexual parents' experiences of managing resemblance and non-resemblance between child and parent in an identity-release donor programme. The study is part of the prospective longitudinal Swedish Study on Gamete Donation (SSGD), including all fertility clinics performing gamete donation in Sweden. A sample of participants in the SSGD, consisting of 30 heterosexual parents with children aged 7–8 years following identity-release sperm donation, participated in individual semi-structured interviews. This study concerns a secondary analysis of the interview data. The results show how donor-conceiving parents experience the presence and absence of child–parent resemblance, and how they navigate between the importance of genetic connectedness and of ‘doing parenthood’ through social interactions. The analysis resulted in three categories: ‘resemblance through nature or nurture’, ‘non-resemblance brings the donor to the front’ and ‘feelings about and coping with resemblance talk’. The first two categories deal with the intrapersonal aspects of physical and non-physical resemblance, while the last category includes aspects of resemblance in relation to persons outside the core family. The presence or absence of parent–child resemblance regarding both physical and non-physical characteristics appears to constitute a considerable challenge for heterosexual couples with school-aged children following sperm donation. Keywords: assisted reproduction, sperm donation, resemblance, qualitative

International guidelines recommend that health-care providers initiate discussions about the impact of treatment on fertility with cancer patients of reproductive age, or with parents/legal guardians of children, as early as possible in the treatment process. Still, both physicians and patients confirm that this is not always the case. This literature review summarizes findings regarding oncologists' and pediatric oncologists' perspectives and challenges of providing fertility preservation care, and points out directions for development. The results concerning the challenges facing clinicians are consistent and encompass both internal and external factors. The internal factors relate to clinicians' characteristics and values and include their knowledge of fertility preservation, clinical experience, perceptions of patients' plans for children, and how comfortable they are to discuss sensitive issues. The external factors relate to the availability of health-care services and the organization of care, including the clinicians' working conditions. Several strategies to overcome identified challenges for clinicians to provide high-quality fertility preservation care are proposed. These include educational interventions to increase clinicians' knowledge about treatment-induced fertility impairment and available fertility preservation measures, as well as interventions aimed to increase clinicians' readiness and competence to communicate with patients and their parents. In addition, different types of educational resources for patients have been suggested to improve patient-provider communication about fertility preservation, such as age-appropriate brochures and decision aids. Organizational approaches suggested to address the identified external factors include development and implementation of policies and guidelines as well as closer collaboration between oncological and fertility clinics. Also, modifications of electronic medical record systems may support clinicians by prompting the documentation of discussions about potential treatment impact on future fertility and about available fertility preservation options. The development and implementation of multifaceted oncofertility programs appears to be a promising way forward towards high-quality fertility preservation care meeting patients' needs.

Background: Infertility is a well-known sequela of cancer treatment. Despite guidelines recommending early discussions about risk of fertility impairment and fertility preservation options, not all patients of reproductive age receive such information. Aims: This study aimed to investigate young adult cancer patients' receipt of fertility-related information and use of fertility preservation, and to identify sociodemographic and clinical factors associated with receipt of information. Materials and methods: A population-based cross-sectional survey study was conducted with 1010 young adults with cancer in Sweden (response rate 67%). The inclusion criteria were: a previous diagnosis of breast cancer, cervical cancer, ovarian cancer, brain tumor, lymphoma or testicular cancer between 2016 and 2017, at an age between 18 and 39 years. Data were analyzed using logistic regression models. Results: A majority of men (81%) and women (78%) reported having received information about the potential impact of cancer/treatment on their fertility. A higher percentage of men than women reported being informed about fertility preservation (84% men vs. 40% women, p < .001) and using gamete or gonadal cryopreservation (71% men vs. 15% women, p < .001). Patients with brain tumors and patients without a pretreatment desire for children were less likely to report being informed about potential impact on their fertility and about fertility preservation. In addition, being born outside Sweden was negatively associated with reported receipt of information about impact of cancer treatment on fertility. Among women, older age (>35 years), non-heterosexuality and being a parent were additional factors negatively associated with reported receipt of information about fertility preservation. Conclusion: There is room for improvement in the equal provision of information about fertility issues to young adult cancer patients.

STUDY QUESTION How do heterosexual parents experience identity-release donation when adult children have obtained information about their sperm donor? SUMMARY ANSWER Adult offspring’s receipt of identifying information about the sperm donor challenged the fathers’ role as a parent, which was reflected in how parents positioned the donor in relation to the family. WHAT IS KNOWN ALREADY An increasing number of countries provide access to treatment with identity-release or ‘open-identity’ donors. However, there is limited knowledge about how parents experience and manage the situation when adult offspring obtain identifying information about the donor and may even establish contact with him. STUDY DESIGN, SIZE, DURATION This qualitative interview study included 23 parents whose offspring had obtained information about their sperm donor. Interviews were conducted from October 2018 to January 2019. PARTICIPANTS/MATERIALS, SETTING, METHODS A purposive sample of parents (15 mothers and 8 fathers) was recruited via adult offspring, who had requested identifying donor information at five Swedish University hospitals. All participating parents were part of a heterosexual couple who had conceived with sperm from an identity-release donor. Individual semi-structured interviews were conducted face-to face or via telephone, and transcribed audio recordings were analyzed using reflexive thematic analysis. MAIN RESULTS AND THE ROLE OF CHANCE The parents expressed diverse experiences related to their parenthood and the presence of the donor after offspring had obtained information about him; these were described in two themes. The theme ‘Navigating (in)visible markers of parenthood’ describes parenthood as embedded with dichotomous meanings of nature and nurture that parents navigated in relation to social approval. The theme ‘Positioning the donor in a new landscape’ describes how parents managed the presence of the donor by positioning him at a distance or acknowledging him as a person or even as part of the family, while some struggled to position him, giving rise to ambivalent feelings. The absence of genetic connectedness challenged the father’s role as parent, which was reflected in parents’ positioning of the donor. LIMITATIONS, REASONS FOR CAUTION The study was performed within the context of the Swedish legislation on identity-release donation and is based on experiences of heterosexual couples who had used sperm donation and had informed their offspring about their donor conception. This, together with the fact that parents’ accounts were predominantly represented by mothers, must be taken into consideration regarding transferability to other populations. WIDER IMPLICATIONS OF THE FINDINGS Negotiations of social and genetic parenthood are still present among parents many years after treatment and may resurface when adult offspring obtain the donor’s identity. Access of the adult offspring to identifying information about the donor may have unexpected consequences for family relations, including expanding the family to include the donor. Challenges related to male infertility and family dynamics indicate that parents should have access to counseling and support to manage family life with varying genetic linkage within and outside the family unit. STUDY FUNDING/COMPETING INTEREST(S) Financial support was from The Swedish Research Council (Grant 2013-2712). There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER N/A.

STUDY QUESTION Does the theory of planned behaviour (TPB) contribute to understanding parents’ intention to share information about genetic origin with their donor-conceived child? SUMMARY ANSWER Parents’ intention to start disclosure was associated with beliefs that disclosure would have desired consequences and a desire to act in accordance to societal norms. WHAT IS KNOWN ALREADY Despite a growing consensus on donor-conceived offspring’s right to information about their genetic origin, disclosure to the child remains a challenge for many parents, particularly heterosexual couples. TPB has successfully been applied to many health-related contexts and may contribute to increase understanding of parents’ decision-making about disclosing the genetic origin to their children. STUDY DESIGN, SIZE, DURATION A cross-sectional survey study of heterosexual couples with children aged 7–8 years following identity-release oocyte donation (OD, n = 83) or sperm donation (SD, n = 113). PARTICIPANTS/MATERIALS, SETTING, METHODS The study is part of the prospective longitudinal Swedish Study on Gamete Donation. Couples accepted for oocyte or sperm donation treatment at seven fertility clinics were recruited in 2005–2008 and requested to complete four postal surveys in the following 10 years. The present study sample includes heterosexual couples with donor-conceived children aged 7–8 years. Data were collected with the study-specific TPB Disclosure Questionnaire and analysed with path analysis. MAIN RESULTS AND THE ROLE OF CHANCE More than half of parents following OD or SD had already disclosed the donor conception to their child (OD 61%, SD 58%). Among parents who had not yet started the disclosure process, the belief that disclosure would have desired consequences (P < 0.05) and a desire to act in accordance to social norms favouring disclosure (P < 0.01) were positively associated with their intention to talk with their child about the donor conception during the upcoming year. In contrast, perceived confidence to talk with the child about his/her genetic origin was found to be negatively associated with the intention to start the disclosure process (P < 0.05). Type of treatment (OD/SD) and the existence or absence of a genetic link to the child were not directly associated with parents’ disclosure intentions. LIMITATIONS, REASONS FOR CAUTION The study was performed with heterosexual couples within the context of the Swedish legislation on identity-release donation, which limits the generalizability to other populations. Also, attrition may have introduced selection bias to the study findings. Future studies using the TPB Disclosure Questionnaire (TPB-DQ) with larger samples are needed to validate this measure. WIDER IMPLICATIONS OF THE FINDINGS Application of the theory of planned behaviour highlighted the importance of attitudes and social norms for parents’ intention to share information about the donor conception with their child. The present results add to the complexity of disclosure of donor conception, and may contribute to promote open communication and support family life following donor conception. STUDY FUNDING/COMPETING INTEREST(S) Financial support from the Swedish Research Council. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER N/A

Background There is a lack of firm knowledge regarding sexual problems and fertility-related distress in young adults following a diagnosis with cancer. Establishing such understanding is essential to identify patients in need of specific support and to develop cancer care accordingly. This study protocol describes the Fex-Can Cohort study, a population-based prospective cohort study investigating sexual dysfunction and fertility-related distress in young adults diagnosed with cancer in Sweden. The primary objective of the study is to determine the prevalence and predictors of sexual dysfunction and fertility-related distress following a cancer diagnosis in young adulthood compared to prevalence rates for the general population. Further aims are to investigate the trajectories of these issues over time, the co-existence between sexual dysfunction and fertility-related distress, and the relation between these issues and body image, anxiety and depression, health-related quality of life, self-efficacy related to sexuality and fertility, and fertility-related knowledge. Methods Participants in the Fex-Can Cohort will be identified via the Swedish National Quality Registries for Brain Tumors, Breast Cancer, Gynecological Oncology, Lymphoma, and Testicular Cancer. All patients diagnosed at the ages of 18–39, during a period of 18 months, will be invited to participate. Established instruments will be used to measure sexual function (PROMIS SexFS), fertility-related distress (RCAC), body image (BIS), anxiety and depression (HADS), and health-related quality of life (QLQ-C30); Self-efficacy and fertility-related knowledge will be assessed by study-specific measures. The survey will be administered to participants at baseline (approximately 1.5 year after diagnosis) and at 3 and 5 years post-diagnosis. Registry data will be used to collect clinical variables. A comparison group of 2000 young adults will be drawn from the Swedish population register (SPAR) and subsequently approached with the same measures as the cancer group. Discussion The study will determine the prevalence and predictors of sexual dysfunction and fertility-related distress in young men and women with cancer. The findings will form a basis for developing interventions to alleviate sexual problems and fertility-related distress in young adults with cancer in the short and long term. Trial registration This is an observational cohort study and clinical trial registration was therefore not obtained.

Supplemental Digital Content is available in the text, Background: This study protocol describes the Fex-Can Childhood project, comprising two studies: The Fex-Can Childhood observational study (OS) and the Fex-Can Childhood randomized controlled trial (RCT). The Fex-Can Childhood OS aims to determine the prevalence and predictors of sexual dysfunction and fertility-related distress in young adult childhood cancer survivors (aged 19–40) compared to an age matched comparison group; the Fex-Can Childhood RCT will evaluate the effect of a web-based psycho-educational intervention (Fex-Can intervention) on sexual dysfunction and fertility-related distress. Methods: The Fex-Can Childhood OS will have a population-based cross-sectional design. All individuals treated for childhood cancer in Sweden at the age of 0 to 17 years (current age 19–40) will be identified through the National Quality Registry for Childhood Cancer. Established self-reported instruments will be used to measure sexual function, fertility-related distress, body image, anxiety and depression, and health-related quality of life. Self-efficacy related to sexual function and fertility, and fertility-related knowledge, will be assessed by study-specific measures. Clinical variables will be collected from the registry. Results will be compared to an age-matched comparison group from the general population. Participants in the Fex-Can Childhood OS who report a high level of sexual dysfunction and/or fertility-related distress will be invited to participate in the RCT. The Fex-Can intervention comprises two programs: The Fex-Can Sex and the Fex-Can Fertility targeting sexual dysfunction and fertility-related distress, respectively. The control condition will be a wait-list. Sexual function and fertility-related distress will be the primary outcomes. The secondary outcomes include body image, anxiety and depression, health-related quality of life and self-efficacy related to sexual function and fertility. Post- and follow-up assessments will be conducted directly after end of intervention (primary end point), at 3 months and 6 months after end of intervention. Additionally, a process-evaluation including study-specific items and a qualitative interview will be conducted. Discussion: The Fex-Can Childhood project will advance knowledge in the areas of sexual function and fertility-related distress among young adult survivors of childhood cancer. If the Fex-Can intervention proves to be efficacious, steps will be taken to implement it in the follow-up care provided to this population.

Women postpone childbirth to an age when morbidity is higher and fertility has decreased and yet the knowledge of mothers morbidity related to age remains scarce. Swedish national register data from the Medical Birth Register and National Patient Register was used to investigate the incidence of diseases listed in the International Classification of Diseases, version 10 (ICD-10) in women who gave birth 2007-8. The index group consisted of women 40 years of age or older (n=8 203) were compared to a control group of women, younger than 40 years (n=15 569) at childbirth. The period studied was five years before childbirth to five years after. The main outcome measures were incidence of disease diagnosed in specialized hospital care. Demographical data and use of assisted reproduction (ART) were adjusted for. The results showed that older women were more likely to be single; less frequently used tobacco; were educated on a higher level; had a higher BMI and more often had used ART to become pregnant. The older women showed a higher morbidity rate. In the diagnostic groups: Neoplasms, Blood and immune system, Eye and adnexa, Ear and mastoid, Circulatory, Digestive, Skin and subcutaneous tissue, Musculoskeletal and connective tissue, and Genitourinary. The results add to the body of knowledge of a number of specific risks faced by older mothers and may be used to identify preventive actions concerning fertility and morbidity both before and after childbirth. Funding Agencies|Research Council in the southeast of Sweden, FORSS; Linkoping University

Background Reproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to describe the cultural adaptation of the RCAC scale into Swedish and evaluate its psychometric properties among young women who have undergone treatment for cancer. Methods The RCAC was forward translated from English into Swedish and assessed for cultural adaptation based on a two-panel approach followed by cognitive interviews with the target group. For the psychometric evaluation, a Swedish cohort of 181 female young adult breast cancer survivors completed a survey including the RCAC scale approximately 1.5 years post-diagnosis. Psychometric properties were examined by analyses of construct validity (confirmatory factor analysis and convergent validity), data quality (score distribution, floor and ceiling effects), reliability and known-groups validity. Results The confirmatory factor analysis yielded an acceptable fit (RMSEA 0.08, SRMR 0.09, CFI 0.92). Convergent validity was demonstrated by a negative correlation of moderate size (− 0.36) between the RCAC total score and the emotional function scale of the EORTC QLQ-C30. Reliability measured with Revelle Ω total was satisfactory (0.73–0.92) for five of the dimensions, and poor for the dimension Becoming pregnant (Revelle Ω total = 0.60); Cronbach’s alpha showed a similar pattern. Known-groups validity was indicated by significant RCAC mean score differences (MD), reflecting more concerns among women with a certain (MD 4.56 [95% CI 3.13 to 5.99]) or uncertain (MD 3.41 [95% CI 1.68 to 5.14]) child wish compared to those with no wish for (additional) children. Conclusion The translation and cultural adaptation of the Swedish RCAC has resulted in a scale demonstrating construct and known-groups validity, and satisfactory reliability for five of six dimensions. The dimension Becoming pregnant showed non-optimal internal consistency and should undergo further evaluation. The Swedish RCAC is recommended to be used in research settings for measurement of concerns related to fertility and parenthood in young women with cancer.

Background The number of families conceived through sperm donation to single women is increasing. However, there is limited knowledge about health care professionals’ attitudes towards solo-mothers by choice, and there is some indication that professionals’ personal opinions influence their care of individuals who use alternate ways to build a family. The primary aim of the study was to investigate attitudes towards, and experiences of, families following sperm donation to single women among healthcare professionals working in primary child healthcare. Methods Between April and November 2016 a total of 712 physicians, registered nurses and psychologists working within primary healthcare in Sweden were invited to participate in a cross-sectional online survey study. The study-specific questionnaire contained the following four domains: Attitudes towards legalization and financing, Attitudes towards the family and the child’s health, Clinical experience and Knowledge about sperm donation to single women. Results The majority of the participants were positive or neutral towards sperm donation being allowed to single women in Sweden. However, one third believed that children risk worse mental health and social stigma. Half of healthcare professionals had own clinical experience of caring for solo-mothers by choice and their children, and of these one third perceived that these families had more need of support than other parents. One out of four indicated that they did not have sufficient knowledge to be able to provide adequate care to these families. Conclusions The present results indicate that while there was a relatively large support for sperm donation being allowed to single women in Sweden among health care professionals, many expressed concerns about the child’s health, as well as low confidence in their knowledge about the specific needs in this patient group. There is a need for educational interventions targeted to healthcare professionals in primary child healthcare in order to provide adequate care to solo-mothers by choice and their children.

AimIn February 2016, Sweden upheld its ban on surrogacy following a Government enquiry. This survey investigated attitudes towards surrogacy among primary health professionals working with children and their experiences of working with families following surrogacy abroad. MethodsFrom April to November 2016, nurses, physicians and psychologist working in primary child health care in four counties in Sweden were invited to participate in a cross-sectional online survey about surrogacy. ResultsThe mean age of the 208 participants was 49.2years (range 27-68) and nearly 91% were women. Approximately 60% supported legalised surrogacy. Wanting a conscience clause to be introduced in Sweden was associated with not supporting surrogacy for any groups, while personal experiences of infertility and clinical experiences with families following surrogacy were associated with positive attitudes towards surrogacy for heterosexual couples. The majority (64%) disagreed that surrogate children were as healthy as other children, and many believed that they risked worse mental health (21%) and social stigmatisation (21%). ConclusionWe found that 60% supported legalised surrogacy, but many expressed concerns about the childrens health and greater knowledge about the medical and psychosocial consequences of surrogacy is needed. Funding Agencies|Swedish Research Council for Health, Working Life and Welfare

Objective The aim of this study was to investigate practice behaviours of Swedish physicians with regard to discussing the impact of cancer treatment on fertility with paediatric oncology patients and their parents, and to identify factors associated with such discussions. Methods A cross‐sectional survey study was conducted targeting all physicians in Sweden working in paediatric oncology care settings. Participants responded to a questionnaire measuring practice behaviour, attitudes, barriers, and confidence in knowledge. Multivariable logistic regression was used to determine factors associated with seldom discussing fertility. Results More than half of the physicians routinely talked with their patients/parents about the treatment's potential impact on fertility (male patients: 62%; female patients: 57%; P = 0.570). Factors associated with less frequently discussing fertility with patients/parents were working at a non‐university hospital (male patients: OR 11.49, CI 1.98–66.67; female patients: OR 33.18, CI 4.06–271.07), concerns that the topic would cause worry (male patients: OR 8.23, CI 1.48–45.89; female patients: OR 12.38, CI 1.90–80.70), and perceiving the parents as anxious (male patients: OR 7.18, CI 1.20–42.85; female patients: OR 11.65, CI 1.32–103.17). Conclusions Based on our findings, we recommend structured training in how to communicate about fertility issues in stressful situations, which in turn might increase fertility‐related discussions in paediatric oncology.

This study protocol describes the clinical trial of the Fex-Can intervention, a web-based self-help program targeting sexual dysfunction and fertility-related distress. The psycho-educational intervention has been developed in collaboration with young patients with cancer and shown to be feasible. The primary objective is to determine whether the Fex-Can intervention, provided in addition to standard care, is superior to standard care in terms of reduction of sexual dysfunction and fertility-related distress directly after end of the 12-week program. The trial also aims to determine whether the intervention has an effect on the secondary outcomes including health-related quality of life, anxiety, depression, body image, fertility knowledge, and self-efficacy related to sexuality and fertility. The trial has an randomized clinical trial (RCT) design with two parallel arms. The active groups receive either the version of the Fex-Can intervention targeting sexual problems or the version targeting fertility-related distress. Control groups receive standard care. Primary outcomes will be sexual function assessed with the Patient-Reported Outcomes Measurement Information System® Sexual Function and Satisfaction measure version 2.0 (SexFS) and fertility-related distress assessed with the Reproductive Concerns After Cancer scale (RCAC). The effect of the intervention will be evaluated directly after end of the program. Primary and secondary outcomes will also be assessed at the short- (12 weeks after end of program) and long-term (20 and 44 months after end of program) follow-up. At least 64 completers will be needed in each arm (total n = 256) to achieve adequate statistical power in the analyses. In order to increase the understanding of how the intervention brings about a possible change, semi-structured interviews will additionally be conducted with a purposeful sample shortly after completion of the intervention. If the Fex-Can intervention proves to be efficacious the necessary steps will be taken to implement it in routine care for young adults diagnosed with cancer. Healthcare could thereby be provided with an easily accessible, cost-effective intervention to offer to young adults suffering from fertility-related distress or sexual problems. ISRCTN36621459 . Registered 25 January 2016.

Introduction The survival rates for testicular cancer are excellent; still, there is a lack of knowledge regarding important survivorship issues, such as sexual dysfunction and reproductive concerns. Aim The aim of this study was to investigate the prevalence and predictors of sexual dysfunction and reproductive concerns and the potential association between these issues in young men ∼2 years after a diagnosis of testicular cancer. Methods Data were collected from 111 men (response rate = 50%) diagnosed with testicular cancer at age 16–39. Patients were identified via the Swedish National Quality Registry for Testicular Cancer and approached with a survey, including standardized measures of sexual function, reproductive concerns, body image, and health-related quality of life. The survey was sent to participants approximately 2 years after their cancer diagnosis. Clinical variables were collected from the registry. Predictors were identified by multivariable linear regression analyses. Main Outcome Measures The main outcomes were sexual function, assessed with the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction measure version 2.0, and reproductive concerns, assessed with the Reproductive Concerns After Cancer scale. Results Sexual dysfunction was reported by 26% of men, and a high level of reproductive concerns was reported by 28%. Lower satisfaction with sex life was associated with older age (β = −0.41), negative body image (β = −0.42), not having a partner (β = 4.8), and dissatisfaction with sex life before cancer (β = 8.31). Negative body image was associated with reproductive concerns in the dimensions of fertility potential (β = 0.06), partner disclosure (β = 0.08), and child’s health (β = 0.07), whereas having had fertility preservation predicted higher levels of concerns with regard to personal health (β = 0.52) and achieving pregnancy (β = 0.53). Clinical variables did not predict either sexual function or reproductive concerns. Clinical Implications Our results show that the majority of young men diagnosed with testicular cancer do not report sexual dysfunction or reproductive concerns 2 years after diagnosis. A sizeable minority, however, does report dysfunction or reproductive concerns, which should be recognized in the follow-up care of this population. Strengths & Limitations A strength of the study is the use of high-quality registry data and validated instruments. The lack of Swedish norms for sexual function and reproductive concerns is a possible limitation. Conclusion A subgroup of young men treated for testicular cancer report sexual dysfunction or reproductive concerns approximately 2 years after diagnosis. Factors associated with these issues seem to mainly be psychological, rather than medical, nature.

The objective of the study is to examine attitudes towards aspects of donation treatment based on a national Swedish sample of gamete donors and couples undergoing assisted reproductive techniques (ART). The present study was part of the Swedish study on gamete donation, a prospective longitudinal cohort study including all fertility clinics performing gamete donation in Sweden. The sample comprised 164 oocyte donors, 89 sperm donors, 251 people treated with their own gametes (in vitro fertilisation (IVF)), 213 oocyte recipients and 487 sperm recipients. A study-specific questionnaire was used. Attitudes vary widely between couples using their own gametes for IVF and those receiving or donating oocyte or sperm. The groups differed in their responses to most questions. Oocyte and sperm donors were more likely to agree with the statements "The donor should be informed if the donation results in a child" and "Offspring should receive some information about the donor during mature adolescence" than recipients of donated gametes and couples treated with their own gametes. Donor recipients, IVF couples and donors expressed different attitudes towards openness and information when it came to gamete donation, and those differences seemed to depend on their current reproductive situation. Funding Agencies|Merck Serono; Uppsala/Orebro Research Council; Marianne and Marcus Wallenberg Foundation

PURPOSE: To explore childhood cancer survivors' views about sex and sexual experiences and, as an additional aim, their possible needs for care and support from health care professionals regarding sexual life. \ud \ud METHODS: Written online focus group discussions were performed with survivors of childhood cancer, identified through the Swedish Childhood Cancer Registry; 133 (36%; aged 16-25) participated. Written text was analysed using qualitative content analysis. \ud \ud RESULTS: The analysis resulted in one main category: Could my cancer experience have an impact on my sexual life? with four generic categories: Sex considered to be good, Feeling insecure and falling behind, Relating sex to a stable relationship and Concerns related to the physical body. In general, participants had not reflected on the possibility that their cancer experience could impact on sexual life. Sex was often considered to be something natural, important and taken for granted. However, thoughts and worries were expressed including being shy, feeling insecure and falling behind peers. Physical concerns included vaginal dryness and difficulties related to erection and reaching orgasm. Many participants stated that sexual issues had not been discussed with health care professionals, however, the need for such support differed. \ud \ud CONCLUSIONS: Many of the childhood cancer survivors' did not relate their sexual experiences to previous cancer treatment. However, problems were expressed, both of emotional and physical nature. Many participants stated that they had not received any information or support regarding sexual issues from health care professionals, why it is recommended to be regularly addressed in follow-up care.

Disclosure issues in relation to donor conception have mainly been examined in the context of relationships and interaction within donor-conceived families, whilst influences from outside the family, for example societal ones, have been little researched. This study explored the societal experiences of individuals who build their family with the help of donor conception (i.e. donor-conceived families), specifically, where and how parents and society interact and the presence and influence of cultural beliefs and values regarding the family. Belgian (n = 89) and Swedish (n = 56) donor-conceiving parents completed an online-survey focusing on their experiences with societal perceptions and attitudes and behaviour and responses from friends, healthcare professionals and teachers. Descriptive and comparative statistical analyses were conducted. Results showed that donor-conceiving parents were challenged by societal representations, responses from friends, healthcare professionals and teachers, and cultural norms and values. Parents had to cope with lack of knowledge and understanding of donor-conceived families and colliding views on the relevance of genes in kinship. They needed to be able to explain and defend themselves, correct others and handle emotions and sensitivity when managing these interactions. Through psycho-education health-care professionals can help families anticipate potential reactions and manage societal responses by strengthening parents’ coping mechanisms. These findings also call for awareness of the presence of cultural norms and values even when counsellor and patient share the same culture because counsellor and donor-conceiving parents can relate differently to (collide or conform with them) the shared cultural norms, which can impact on parents’ experience. ispartof: Human Fertility vol:24 issue:1 pages:1-11 ispartof: location:England status: Published online

Introduction Surrogacy is a controversial method of assisted reproduction that is not permitted in many countries. While there is some evidence that families following surrogacy seem to fare well, there is limited knowledge about the experiences of parents who turn to cross-border surrogacy. The aim of the present study was therefore to investigate the experiences of heterosexual parents and gay fathers who chose cross-border surrogacy to have a child. Material and methods This cross-sectional survey describes the experiences of 30 families (18 heterosexual parent and 12 gay father families). Participants were recruited through a website for a Swedish surrogacy interest group. The participants were requested individually to complete a postal questionnaire including study-specific questions on their experiences of disclosure and the Swedish Parenting Stress Questionnaire. Results All couples but one were still living together and had a child (3 months to 5 years). Parenting stress levels were generally low and were not related to sexual orientation. While almost all parents were open about the childs mode of conception in contacts with health care, gay fathers were significantly more open about using surrogacy in contacts with preschool (P = 0.004) and child recreational activities (P = 0.005) compared with heterosexual parents. A majority described being treated positively or "as any other parent" in these contexts. Conclusions Heterosexual and gay parents reported low levels of parenting stress and generally experienced positive or neutral reactions to their parenthood in contacts with healthcare providers, in preschool, and in the childs recreational activities. Funding Agencies|Swedish Research Council for Health, Working Life and Welfare

Objective A dearth of studies focusing on young women (

STUDY QUESTION: How do heterosexual parents reason about and experience information-sharing with offspring following identity-release sperm donation? SUMMARY ANSWER: Sharing information about using donor-conception with offspring is a complex process at several levels, with the parent's personal beliefs and the child's responses serving as driving or impeding forces for the information-sharing process. WHAT IS KNOWN ALREADY: The overall view of disclosure in gamete donation has shifted from secrecy to openness, but there is still uncertainty among parents concerning how and when to tell the child about his/her genetic origin. Most research on donor-conceived families has focused on donation treatment under anonymous or known circumstances, and there is a lack of studies in settings with identity-release donations. STUDY DESIGN, SIZE, DURATION: A qualitative interview study among 30 parents following identity-release sperm donation treatment. Interviews were conducted from February 2014 to March 2015. PARTICIPANTS/MATERIALS, SETTING, METHODS: The present study is part of the prospective longitudinal Swedish Study on Gamete Donation (SSGD), including all fertility clinics performing gamete donation in Sweden. A sample of participants in the SSGD, consisting of heterosexual parents with children aged 7-8 years following identity-release sperm donation, participated in individual semi-structured interviews. MAIN RESULTS AND THE ROLE OF CHANCE: The analysis revealed one main theme: information-sharing is a process, with three subthemes; (i) the parent as process manager, (ii) the child as force or friction and (iii) being in the process. The first two subthemes were viewed as being linked together and their content served as driving or impeding forces in the information-sharing process. LIMITATIONS, REASONS FOR CAUTION: The fact that the study was performed within the context of the Swedish legislation on identity-release donation must be taken into consideration as regards transferability to other populations, as this may affect parents' reasoning concerning their information-sharing with the child. WIDER IMPLICATIONS OF THE FINDINGS: The present findings highlight the role of the donor-conceived child in the information-sharing process and may contribute to develop counselling that increases parents' confidence in handling children's reactions to information about their genetic origin. STUDY FUNDING/COMPETING INTERESTS: Financial support from The Swedish Research Council, The Family Planning Fund in Uppsala and Ferring Pharmaceuticals. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.

Infertility is a recognised potential sequel of cancer treatment which impacts negatively on the quality of survival. The aim of this study was to explore how men and women experience the threat of infertility by cancer treatment and individuals' thoughts about having children after cancer during the first 2 years following diagnosis. Nine women and seven men (aged 24-41) participated in two interviews in this longitudinal interview study, after the initiation of cancer treatment and 2 years thereafter. The interviews focused on participants' thoughts and feelings about threatened fertility and having children. The interviews were analysed with qualitative content analysis with a particular focus on identifying experiences over time. The Traits-Desires-Intentions model was used to reflect upon the study findings. The analysis resulted in the identification of four themes: Continue calmly on chosen path, Abandoning plans for children, Avoiding the subject of fertility and Struggling towards life goals. The results emphasise the need to offer individualised fertility-related treatment communication and counselling, both at the time of cancer diagnosis and also in connection with follow-up care. Appropriate fertility-related communication should be included in young cancer patients' survivor care plans.

Introduction For many donor‐conceiving heterosexual parents, the process of deciding whether and what to tell children about their genetic origin is challenging. We hypothesized that incomplete couple agreement about disclosure could be associated with parenting stress. The aim of the study was to investigate: (1) parenting stress levels among heterosexual parents of young children following gamete donation and (2) whether parenting stress is related to perceived agreement about disclosure of the donor conception to the children. Material and methods This study is part of the longitudinal multicenter Swedish Study on Gamete Donation and included a total of 213 heterosexual parents with children aged 1–4 years following oocyte donation (n = 103) and sperm donation (n = 110). Parents individually completed a questionnaire that included validated instruments on parenting stress (SPSQ) and relationship quality (ENRICH), as well as a study‐specific measure on disclosure agreement. Multiple regression analysis was applied. Results Incomplete couple agreement on disclosure to the children was not statistically significantly associated with increased levels of parenting stress. Relationship satisfaction consistently and significantly accounted for variation in parenting stress levels, indicating that relationship satisfaction had a buffering impact on parenting stress. Conclusions Parental stress does not appear to be negatively influenced by incomplete couple agreement about disclosure to children. As children grow up, reaching agreement about what to tell the child about the donor conception might become more relevant for couples' stress related to parenthood.

PURPOSE: The purpose of the study is to evaluate the feasibility of a self-help web-based intervention to alleviate sexual problems and fertility distress in adolescents and young adults with cancer.\ud \ud METHODS: Twenty-three persons with cancer (19 women and 4 men, age 18-43, 1-5 years post-diagnosis of lymphoma, breast, gynecologic, central nervous system, or testicular cancer) were recruited to test a 2-month web-based program targeting sexual problems or fertility distress. The programs were organized in modules with educational and behavior change content, including texts, illustrations, exercises, and video vignettes. The program also included a discussion forum and an "ask the expert" forum. In addition, the sexuality program offered two telephone consultations. Feasibility (regarding demand, acceptability, preliminary efficacy, and functionality) was evaluated with the website system data, telephone interviews, continuous online evaluations, and study-specific measures.\ud \ud RESULTS: Fifteen participants completed four modules or more. Most of the program features were used and well accepted by these "committed users." The web-based format enabled flexible use by participants with diverse needs. Preliminary efficacy was indicated by self-reported increased knowledge and skill in handling sexual problems and fertility distress. The website was easy to use and functioned well technically.\ud \ud CONCLUSIONS: The present study indicated that this web-based intervention was feasible for adolescents and young adults with cancer. The effectiveness of the intervention in decreasing sexual problems and fertility distress will be tested in a population-based randomized controlled trial for adolescents and young adults with cancer. \ud \ud TRIAL REGISTRATION: ISRCTN36621459.

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.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.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.Women newly diagnosed with cancer seem to be especially vulnerable when facing risk for treatment-induced 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.

STUDY QUESTION: What are oocyte donors and sperm donors attitudes towards disclosure and relationship to donor offspring? SUMMARY ANSWER: Oocyte and sperm donors in an identity-release donor programme support disclosure to donor offspring and have overall positive or neutral attitudes towards future contact with offspring. WHAT IS KNOWN ALREADY: There is a global trend towards open-identity gamete donation with an increasing number of countries introducing legislation allowing only identifiable donors. While women and men who enrol in identity-release donor programmes accept that they may be contacted by donor offspring, there is limited knowledge of their attitudes towards disclosure to donor offspring and how they perceive their relationship to potential donor offspring. STUDY DESIGN, SIZE AND DURATION: The present study is part of the `Swedish study on gamete donation, a prospective cohort study including donors at all fertility clinics performing donation treatment in Sweden. During a 3-year period (2005-2008), donors were recruited consecutively and a total of 157 oocyte donors and 113 sperm donors (who did not donate to a specific `known couple) were included prior to donation. Participants in the present study include 125 female (80%) and 80 male donors (71%) that completed two follow-up assessments. PARTICIPANTS/MATERIALS, SETTINGS AND METHODS: Participants completed two postal questionnaires 2 months after donation and 14 months after donation. Attitudes towards disclosure to donor offspring were assessed with an established instrument. Perceptions of involvement with donor offspring and need for counselling was assessed with study-specific instruments. Statistical analyses were performed with non-parametric tests. MAIN RESULTS AND THE ROLE OF CHANCE: A majority of oocyte and sperm donors supported disclosure to donor offspring (71-91%) and had positive or neutral attitudes towards future contact with offspring (80-87%). Sperm donors reported a higher level of involvement with potential donor offspring compared with oocyte donors (P = 0.005). Few donors reported a need for more counselling regarding the consequences of their donation. LIMITATIONS, REASONS FOR CAUTION: While the multicentre study design strengthens external validity, attrition induced a risk of selection bias. In addition, the use of study-specific instruments that have not been psychometrically tested is a limitation. WIDER IMPLICATIONS OF THE FINDINGS: The positive attitudes towards disclosure to offspring of female and male identity-release donors are in line with previous reports of anonymous and known donors. While our results on donors general positive or neutral attitudes towards future contact with potential donor offspring are reassuring, a subset of donors with negative attitudes towards such contact warrants concern and suggests a need for counselling on long-term consequences of donating gametes. STUDY FUNDING: The `Swedish study on gamete donation was funded by the Swedish Research Council, the Swedish Council for Health, Working Life and Welfare, and the Regional Research Council in Uppsala-Orebro. There are no conflicts of interest to declare. Funding Agencies|Swedish Research Council