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Introduction: Overall childbirth experience scores are used both in research and in clinical settings. Since it is still not fully understood what assessment of childbirth experience on a single-item numeric rating scale or visual analog scale represents, the aim of this study was to explore women's reasoning and thoughts when rating overall childbirth experience numerically., Material and Methods: A qualitative interview study of 26 women was conducted using a think-aloud technique at a university referral hospital in Sweden. A manifest qualitative content analysis was performed to generate categories and sub-categories representing how women decided which single value should represent their experience of giving birth., Results: Two main categories emerged from the analysis. The first, Strategies for choosing a number, reflects variations in how the women approached the rating scale itself and includes five sub-categories, each relating to a different strategy: (1) Comparison, (2) Start from the maximum value, (3) Start from the middle, (4) Weigh certain experiences more heavily, and (5) A means to an end. The second category, Specific factors considered in the rating, includes four sub-categories, representing groups of factors contributing to the final childbirth experience score: (1) The time period, (2) Events linked to strong emotions, (3) Perceived support, and (4) Previous expectations. What the women included in their overall childbirth experience was hence translated into a number, using strategies from the first category and factors from the second category., Conclusions: The considerable variations in how women approach the rating scale, and what they include in the assessment of overall childbirth experience, suggest that not only the childbirth experience itself but also the reasoning when evaluating it, is multifaceted. A standardized phrasing of the question and a clear purpose for the evaluation is warranted to strengthen the validity of the measurement. When used clinically for identifying women in need of support after childbirth, the rating should be followed by a conversation about the experience of giving birth, independent of the value chosen., (© 2025 The Author(s). Acta Obstetricia et Gynecologica Scandinavica published by John Wiley & Sons Ltd on behalf of Nordic Federation of Societies of Obstetrics and Gynecology (NFOG).)

Background: Parents given a diagnosis of cancer must balance the demands of their illness and caregiving responsibilities. This can result in parental stress and have a negative impact on the well-being of the whole family. A greater understanding of the experiences of parents with cancer is necessary to provide adequate support., Objective: The aim of this study was to explore parenting concerns and challenges among parents with cancer who were caring for dependent children younger than 18 years., Methods: Semistructured interviews were carried out with 22 parents with cancer. Interviews were audio-recorded, transcribed, and analyzed using thematic analysis., Results: Parental concerns and challenges affected parents in their parental role and their everyday family life. Three overarching themes described the struggles in balancing life as a parent and as a patient: navigating dual roles as a parent with cancer , impact of cancer on parenting , and impact on family life . Parents' primary focus was on their children's well-being, and they struggled to manage their own expectations of parenting and the demands on their role in the family., Conclusion: The results highlight the complexity of being a parent with cancer while caring for dependent children. To support parents during the cancer journey, it is important to understand the consequences of their illness on their parental role and the family., Implications for Practice: Supporting parents to feel secure in their parental role and providing support to them during their cancer journey should be integrated into routine cancer care, where parenting concerns and challenges are addressed., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 The Authors. Published by Wolters Kluwer Health, Inc.)

Background and Purpose: Parenting concerns can be a major source of distress for patients with cancer who are parents of dependent children; however, these are often not addressed in health care. The Parenting Concerns Questionnaire (PCQ) is an instrument designed to assess parents' worries about the impact of cancer on their children and their ability to parent during this time. The Swedish version of the PCQ has, however, not been evaluated. This study therefore aimed to examine the psychometric properties of the PCQ in a sample of Swedish parents with cancer., Material and Methods: A sample of 336 patients with cancer having dependent children (≤18 years) were included in a cross-sectional web-based survey. Participants completed questionnaires assessing parenting concerns, depression, anxiety, and stress symptoms (DASS); self-efficacy, family functioning (FAD-GF); and sociodemographic and clinical characteristics. Descriptive analyses, as well as reliability and validity analyses, were conducted followed by a confirmatory factor analysis of the factor structure proposed by the authors of the original version of the PCQ., Results: The majority were mothers (94.9%) with breast cancer (66.4%) aged 40-50 years (59.5%). The results showed evidence for convergent, criterion, and known group's validity, but the original three-factor structure of the PCQ was not fully supported by confirmatory factor analysis., Interpretation: Evaluating parenting concerns may be an important step towards identifying patients who could benefit from targeted psychosocial interventions. However, the PCQ may require some further refinement to fully capture the breadth of parenting concerns in parents with cancer in different settings.

Background and Purpose: As many as one in four adults with cancer have children under 18 years. Balancing parenting and cancer is challenging and can be a source of psychological distress. This study aimed to examine psychological distress in parents with cancer and its associations with parenting concerns, self-efficacy, and emotion regulation., Materials and Methods: This was a cross-sectional questionnaire study of 406 parents (aged 25-60 years) diagnosed with cancer within the last 5 years, with at least one dependent child (≤ 18 years). Parents completed questionnaires on psychological distress (DASS-21), parenting concerns (PCQ), self-efficacy (GSE), emotion regulation (ERQ), mental and physical health, and sociodemographics. Data were analysed using multiple logistic regressions on depression (yes/no), anxiety (yes/no), and stress (yes/no)., Results: Higher parenting concerns were associated with greater odds of depression (OR = 2.33, 95% CI: 1.64-3.31), anxiety (OR = 2.30, 95% CI: 1.64-3.20), and stress (OR = 3.21, 95% CI: 2.20-4.69) when adjusting for health and sociodemographic factors. Poorer self-efficacy was associated with increased odds of anxiety (OR = 0.94, 95% CI: 0.89-0.99, p < 0.05), whereas lower use of cognitive reappraisal and higher use of expressive suppression increased the odds of depression (OR = 0.76, 95% CI: 0.59-0.98 | OR = 1.46, 95% CI: 1.18-1.80)., Interpretation: The findings highlight the complexity of parental well-being in relation to parenthood and cancer, stressing the need for interventions that address relevant psychological factors to improve overall mental health in this population.

Background: No web-based interventions addressing sexual problems are available for young adult survivors of childhood cancer., Aim: This study aimed to test the efficacy of a web-based psychoeducational intervention, Fex-Can Sex, to alleviate sexual problems in young adults treated for cancer during childhood., Method: This randomized controlled trial tested the effects of a 12-week, self-help, web-based intervention. Young adults (aged 19-40) reporting sexual dysfunction were drawn from a population-based national cohort of childhood cancer survivors and randomized to either an intervention group (IG, n  = 142) or a wait-list control group (CG, n  = 136). The primary outcome was 'Satisfaction with sex life' assessed by the PROMIS® SexFS v 2.0. Secondary outcomes included other SexFS domains, body image (BIS), emotional distress (HADS), health-related quality of life (EORTC QLQ-C30), and sex-related self-efficacy. Surveys were completed at baseline (T0), directly after the intervention (T1), and three months later (T2). The effects of the intervention were tested using t -test and linear mixed models, including intention-to-treat (ITT) and subgroups analysis. Adherence was based on log data extracted from the website system. The intervention included an open-ended question about perceived sexual problems., Results: No effect of the intervention was found in the primary outcome. Regarding secondary outcomes, the IG reported less vaginal dryness (Lubrication subscale) than the CG at T1 ( p  = 0.048) and T2 ( p  = 0.023). Furthermore, at T1, the IG reported less emotional distress than the CG ( p  = 0.047). Subgroup analyses showed that those with greater sexual problems at T0 improved over time (T1 and T2), regardless of group allocation. Overall, adherence to the intervention was low and participants' activity levels did not change the results. Additionally, some members of the IG reported increased understanding and acceptance of their sexual problems., Conclusion: The Fex-Can Sex intervention shows potential to improve sexual function, especially among those with greater dysfunction. To increase adherence and effect, we recommend the intervention to be further developed including more tailored content., Clinical Trial Registration: ISRCTN Registry, trial number: 33081791 (registered on November 27, 2019)., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2024 The Author(s).)

Background: Despite the challenges that caring for a child with cancer brings for parents, little knowledge is available concerning the effects on the parents' couple relationship. Furthermore, few interventions have been designed to support parents in their couple relationship. The aim of this paper was, therefore, to explore parents' experiences of their couple relationship while having a dependent child with cancer and the support they received from a family-based intervention, the Family Talk Intervention (FTI)., Methods: Data for this paper were taken from semi-structured interviews performed in a pilot study of the FTI in the context of pediatric oncology. In total, 22 couples were interviewed after participating in the FTI. The interviews were transcribed and analyzed using qualitative content analysis., Results: Parents described how maintaining a couple relationship while living with childhood cancer could be very challenging and was not given the highest priority. The FTI was considered a way of providing important support to the couple and a chance for them to sit down together and listen to each other's perspectives on the situation. Parents described that the FTI had helped them gain an increased mutual understanding, sometimes also helping them to realize that they needed more extensive professional support in their relationship., Conclusions: Living with childhood cancer and upholding a healthy couple relationship is challenging for parents. The FTI has the potential to support couples, mainly by providing opportunities for parents to communicate with each other. However, some couples may be in need of a tailored clinical intervention., (© 2023 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.)

Background: Balancing having cancer and parenting a major stressor, and may result in parenting distress, negatively affecting the whole family. To provide adequate support, knowledge of existing psychosocial interventions are crucial to guide future interventions. This study aimed to describe available psychosocial interventions for parents with cancer and dependent children (<18 years)., Method: We conducted a systematic review, and four databases were searched from January 2000 to March 2023., Results: Thirty studies were included, reporting on 22 psychosocial interventions for parents with cancer. They aimed to improve different aspects of parenting distress, and included psychoeducation and communication strategies. Interventions were beneficial to and acceptable among parents, but only a few had been evaluated. The study quality was, overall, assessed as moderate., Conclusions: The results of this review highlight the diversity of available psychosocial interventions for parents with cancer and the outcomes on parenting distress, as well as methodological challenges., Competing Interests: Declaration of Competing Interest The authors report no conflict of interest. This study was a part of the CONNECTED-project, supported by the Swedish Research Council (grant number 2020-02080), the Swedish Cancer Society (grant number 20 0824 Pj) and Centre of Women’s Mental Health during the Reproductive Lifespan (WOMHER) at Uppsala University., (Copyright © 2023 The Authors. Published by Elsevier B.V. All rights reserved.)

Objective: To explore descriptions of negative childbirth experience in relation to mode of birth and events during labour., Design: A descriptive study using a convergent mixed methods design. Written responses to open-ended online questions regarding negative childbirth experience were explored using qualitative content analysis. Generated sub-themes were quantified, and stratified on mode of birth and events during labour., Participants and Setting: 112 women with low ratings of overall childbirth experience, participating in a randomised controlled trial evaluating internet-based cognitive behavioural therapy in Sweden. Qualitative data were collected before randomisation, three months postpartum., Results: Four sub-themes emerged from the qualitative analysis: Experiencing fear-based emotions, Experiencing physical distress, Being affected by caregivers' and partner's behaviour and Being affected by bad facilities and poor organisation. Only small differences were found when stratifying sub-themes on mode of birth and events during labour. Regardless of mode of birth and events during labour, the childbirth experience was dominated by fear-based emotions., Key Conclusions and Implications for Practice: Mixed-methods analyses demonstrate the challenges in understanding negative childbirth experience in relation to mode of birth and specific events during labour, with results clearly showing the multifaceted nature of this concept. The central role of fear in relation to negative childbirth experience should be considered when designing support during and after labour, to prevent adverse effects of the childbirth experience., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 The Author(s). Published by Elsevier B.V. All rights reserved.)

Purpose: To investigate the short- and long-term risk of psychotropic medication use in parents who lose a child to cancer diagnosed in adolescence., Methods: This is a Swedish nationwide register-based study including 184 bereaved mothers and 184 bereaved fathers of 184 children diagnosed with cancer in adolescence. Logistic regression analyses, adjusted for sociodemographic characteristics and history of mental health problems, were performed to estimate risk of a prescription of psychotropic medication (anxiolytics, hypnotics/sedatives, antidepressants) in cancer-bereaved parents from 1 year before to 5 years after the child's death, with a general population sample of non-bereaved parents (n = 3291) as referents., Results: At the year of the child's death, 28%-36% of mothers and 11%-20% of fathers had a prescription of anxiolytics, hypnotics/sedatives or antidepressants. The corresponding percentages for non-bereaved mothers and fathers were 7%-12% and 4%-7%, respectively. Compared to non-bereaved mothers, bereaved mothers showed higher odds of prescriptions from 1 year before up to four (anxiolytics) and 5 years (hypnotics/sedatives and antidepressants) after the child's death. Bereaved fathers showed higher odds than non-bereaved fathers of prescriptions from 1 year before up to the year of (anxiolytics and hypnotics/sedatives) and 1 year after (antidepressants) the child's death. No differences in odds between bereaved and non-bereaved fathers were found at 2 years after the child's death. Being unmarried, born outside Sweden, and having a history of mental health problems were associated with higher odds of prescribed medications., Conclusions: Indicative of mental health problems of clinical importance, cancer-bereaved parents had a higher prevalence of use of psychotropic medication. A decrease in medication use was evident with time, but still at 5 years after the child's death mothers displayed a higher use while fathers showed no difference to non-bereaved fathers after 2 years., (© 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Background: The aim was to investigate psychotropic medication use in parents of survivors of adolescent cancer from the acute post-diagnostic phase and up to 2 years following the cancer diagnosis., Methods: This study had a nationwide register-based cohort design comparing psychotropic medication use in parents of adolescent survivors of cancer (n = 2323) to use in parents of cancer-free controls (n = 20,868). Cox proportional hazards models, adjusted for cancer diagnostic group, parents' age, country of birth, education level, marital status and previous mental health problems estimated the risk of use from the time of the cancer diagnosis up to 2 years later., Results: During the first 6 months after the cancer diagnosis, both mothers and fathers had an increased risk of use of anxiolytics (mothers: HR adj 1.71, 95% CI 1.30-2.25; fathers: HR adj 1.57, 95% CI 1.10-2.45) and hypnotics/sedatives (mothers: HR adj 1.53, 95% CI 1.23-1.90; fathers: HR adj 1.32, 95% CI 1.00-1.75). For fathers with a prescription of psychotropic medication during the first 6 months after the cancer diagnosis, the risk remained increased after 6 months (HR adj 1.66, 95% CI 1.04-2.65). From 6 months after the cancer diagnosis, only the risk of antidepressant use among mothers was increased (HR adj 1.38, 95% CI 1.08-1.76). Risk factors included being divorced/widowed, born in a non-Nordic country, older age and having had previous mental health problems., Conclusion: Our study results show that during the immediate post-diagnostic phase, mothers and fathers of survivors of adolescent cancer are at increased risk of use of anxiolytics and sedatives, whereas only mothers are at increased risk of antidepressant use from 6 months until 2 years after the diagnosis. Further, previous mental health problems were shown to be the strongest risk factor for psychotropic medication use in both mothers and fathers, pointing to the particular vulnerability of these parents., (© 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Purpose: Survivors of childhood brain tumors (BT) are at high risk for long-term physical and psychological sequelae. Still, knowledge about health-related quality of life (HRQL) and associated factors in this population is sparse. This study investigated HRQL and its predictors in long-term survivors of childhood BT., Methods: Survivors of childhood BT (mean age = 28.1 years, SD = 6.8, n = 60) underwent clinical examination and neurocognitive examination, and completed self-rating questionnaires assessing HRQL (RAND-36) and depressive symptoms (Beck Depression Inventory-II). Socio-demographic information was gathered via a questionnaire. Tumor- and treatment-related information was collected from medical records. Control group data were collected from age-matched controls (n = 146) without a history of cancer, randomly selected from the local population registry. Multiple linear regression models were used to investigate predictors of HRQL; separate models were fitted for each domain of the RAND-36., Results: Male survivors (mean age = 27.0, SD = 6.0, n = 39) reported significantly lower HRQL than male controls in the domains of physical functioning, general health, vitality, social functioning, and role limitations-emotional. Female survivors (mean age = 30.2 years, SD = 7.6, n = 21) reported comparable levels as female controls in all domains except physical functioning. A higher burden of late effects, not working/studying, being diagnosed with BT during adolescence, and reporting current depressive symptoms were significant predictors of lower HRQL., Conclusion: Our results highlight that male survivors of childhood BT are at particular risk of impaired HRQL. Also, results point to the close relation between symptoms of depression and impaired HRQL in survivors of childhood BT which should be acknowledged by long-term follow-up care., (© 2022. The Author(s).)

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 = 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., Competing Interests: Conflict of interest statement The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2021 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Purpose: Young women diagnosed with a gynecologic cancer face the risk of significant physical and mental health problems after end of treatment. Still, there is a lack of knowledge regarding specific support needs in this population, and supportive care services provided to young women with a gynecologic cancer have been reported to be insufficient. The aim of this study was therefore to identify support needs experienced by women diagnosed with a gynecologic cancer before the age of 40., Method: Qualitative semi-structured interviews were conducted with participants (n = 10). Interviews were analyzed using content analysis with an inductive approach., Results: Eight categories and two themes were identified. The themes described if these needs were related to how women wanted the support to be provided, or to what the support should contain, i.e., 'Form' and 'Content', respectively. The categories related to 'Form' included: Outreach support; Long-term specialized support; Support for the whole family; and Peer-support, whereas categories related to 'Content' included needs for: Support for psychological reactions; Support related to reproduction, sexuality, and family life; Information regarding late effects; and Support tailored to younger women., Conclusion: Women diagnosed with a gynecologic cancer during young adulthood report several specific support needs. The results provide important guidance to clinicians and health care providers by outlining these needs both in terms of form and content., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Background: Less attention has been given to younger adults' psycho-oncology care needs than to children and older adults with cancer. The aim was to explore how care following end-of-treatment was perceived by women treated for different gynecologic cancer diagnoses during younger adulthood., Methods: A sample of 207 women diagnosed with gynecologic cancer 2008 to 2016, aged 19-39 at time of diagnosis answered one open-ended question regarding important aspects of care after end-of-treatment. The written responses were analyzed with manifest content analysis and presented in relation to the women's diagnoses, i.e., cervical (n = 130), ovarian (n = 57), and other gynecologic cancer diagnoses (n = 20)., Results: The analysis resulted in three categories: Unmet long-term supportive care needs, Satisfying long-term supportive care, and Health care organizational difficulties. Over half of the women (66.7%) described unmet care needs. The corresponding figures were 80.7, 63.1 and 50% for women diagnosed with ovarian, cervical and other gynecologic cancer diagnoses, respectively. Satisfying supportive care were described by approximately one quarter of the women (26.1%). Among women diagnosed with ovarian cancer 14% described satisfying supportive care. The corresponding figures were 26.9 and 30% for women diagnosed with cervical cancer and other gynecological diagnoses, respectively. Approximately one quarter of the women, irrespectively of diagnosis, described aspects related to health care organizational difficulties (28%)., Conclusions: The results highlight the importance of good quality care linked to the diagnosis and based on an understanding of the woman's need, desire and expectation of support after end-of-treatment.

In this nationwide, register-based study, we estimated the risk of mental health problems in 2822 individuals diagnosed with cancer in adolescence (13-19 years). Mental health problems were assessed by psychiatric diagnoses and/or prescribed psychotropic drugs. Cox proportional hazards models estimated hazard ratio (HR) for a psychiatric diagnosis and prescription of psychotropic drug compared to a matched comparison group (n = 28 220). Estimates were adjusted for calendar period and parent characteristics (eg, history of psychiatric diagnosis, education, country of birth). We found an increased risk of a psychiatric diagnosis during the first 5 years after the cancer diagnosis (females: HR 1.23, 95% CI, 1.06-1.44; males: HR 1.32, 95% CI, 1.11-1.56), and at >5 years after diagnosis (females: HR 1.31, 95% CI, 1.09-1.58, males: HR 1.45, 95% CI, 1.18-1.77). The risk of being prescribed antidepressant (females: HR 1.54, 95% CI, 1.30-1.84, males: HR 2.06, 95% CI, 1.66-2.55), antipsychotic (females: HR 2.28, 95% CI, 1.56-3.34, males: HR 3.07, 95% CI, 2.13-4.42), anxiolytic (females: HR 1.95, 95% CI, 1.64-2.31, males: HR 4.02, 95% CI, 3.34-4.84) and sedative drugs (females: HR 2.24, 95% CI, 1.84-2.72, males: HR 3.91, 95% CI, 3.23-4.73) were higher than for comparisons during the first 5 years after diagnosis. Median age at first psychiatric diagnosis and first prescribed psychotropic drug were 18 years. In conclusion, cancer during adolescence is associated with increased risk of mental health problems that may develop in close proximity to treatment. The findings emphasize the need for comprehensive care during treatment and follow-up., (© 2020 The Authors. International Journal of Cancer published by John Wiley & Sons Ltd on behalf of UICC.)

Introduction: There is a lack of studies using validated instruments to investigate prevalence and predictors of sexual dysfunction among young adults., Aim: This population-based observational study aimed to determine the prevalence and predictors of sexual dysfunction in young adults in Sweden and to compare sexual function in women and men., Methods: A random sample of the general population aged 19-40 years, identified via the Swedish population registry, was approached with a postal survey. A total of 819 individuals participated, 493 women (51% response) and 326 men (34% response). Predictors of sexual dysfunction were identified by multivariable logistic binary regression analyses., Main Outcome Measure: Sexual function and satisfaction were assessed using the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction measure, version 2.0., Results: Among the women, 53% reported at least one sexual dysfunction; the corresponding figure for men was 31%. The most common sexual dysfunction in women was low sexual interest (reported by 32%), whereas low satisfaction with sex life was the most common dysfunction in men (reported by 17%). Men reported a higher level of sexual interest and orgasm ability than women, whereas women reported a higher level of orgasm pleasure than men. Regression models showed that in both women and men, having a partner was related to lower risk of dysfunction in the domains satisfaction with sex life and orgasm pleasure. Having children was related to low interest in sex in women, whereas it was related to dissatisfaction with sex life in men. Being born outside of Sweden predicted sexual dysfunction in both women and men, as did experiencing symptoms of anxiety and depression., Conclusion: Sexual dysfunction is common in young adults, particularly in women. Risk factors of sexual dysfunction include not having a partner, having children, being an immigrant, and reporting symptoms of anxiety and depression. Ljungman L, Lampic C, Wettergren L, et al. Sexual Dysfunction Among Young Adults in Sweden-A Population-Based Observational Study. Sex Med 2020;8:631-642., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Introduction: Sexual and reproductive health are significant aspects of quality of life. Healthcare often fails to provide adequate support for young cancer survivors in this area, hence the need to develop more effective interventions. The present study aimed to describe experiences of participating in a web-based psycho-educational intervention focusing on sexual dysfunction and fertility distress after cancer, and to explore these experiences within the theoretical frame of the basic psychological needs for competence, relatedness and autonomy according to self-determination theory., Methods: Individual semi-structured interviews with 24 women and 4 men, age 19-40, were abductively analyzed using the Framework approach for qualitative content analysis., Results: Participant experiences corresponded well with the three main deductive themes competence, relatedness and autonomy, divided into a total of nine subthemes illustrating varying degrees of basic need satisfaction with considerable nuance but not without ambiguity. While satisfaction of the need for competence could be linked to the amount of information in relation to participants' cognitive capacity, satisfaction of the need for relatedness seemed to be of special importance for these young adults with cancer experience. Invitation to the program meant a chance at alleviating loneliness and normalizing problems, symptoms and concerns. Participants' descriptions of perceived autonomy support were more challenging and ambiguous, because of the many contradictions in participants' responses to their variable situations., Conclusion: Basic psychological needs were confirmed as flexible positions along a continuum rather than discrete and mutually exclusive qualities. Understanding the variety of basic need satisfaction may enhance the design of future web-based interventions to be even more inclusive, tailorable and autonomy-supportive. Further research is warranted to determine the role of basic need satisfaction as a possible mediator for web-based psychoeducational interventions in cancer survivorship care., Competing Interests: The authors have declared that no competing interests exist.

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.

Objective: To explore psychological distress experienced by parents who express a need for psychotherapy after curative treatment for their child's cancer., Methods: 15 parents (eight mothers and seven fathers) of children treated for cancer (median time since end of curative treatment: two years) were recruited via a pediatric oncology center. Each parent was interviewed twice and data was analyzed with inductive latent qualitative content analysis., Results: Two overarching themes emerged. One theme, An unfamiliar and frightening situation during treatment, portrayed experiences during the treatment period, and included the sub-themes Initial reactions to the uncontrollable situation, Adjustment to the situation, and Focus on supporting the child. Another theme, Emotional struggles after end of curative treatment, portrayed experiences following curative treatment, and included the sub-themes Transitioning back to life as it was before the diagnosis, Emotional scars, Uncontrollable fears and worries of diseases, and New perspectives on life., Conclusions: Parents of children with cancer experience existential, physical, psychological, and social struggles. They describe an unstable situation after diagnosis and having focused their attention towards protecting their child during treatment. After the end of curative treatment, they experience challenges with transitioning back to life as it was before the diagnosis and dealing with their own emotional scars and fears related to the child's cancer. The findings indicate an unmet need for psychological support among parents of children treated for cancer., Competing Interests: The authors have declared that no competing interests exist.

Objective: A dearth of studies focusing on young women (<40 years) with breast cancer have hampered the understanding of the type, prevalence, and predictors of sexual dysfunction and reproductive concerns in this population., Methods: Data were collected from 181 women (response rate = 60%) diagnosed with breast cancer approximately 2 years previously (age 21-39) using the Swedish National Quality Registry for Breast Cancer and a survey including standardized measures of sexual dysfunction, reproductive concerns, body image, and health-related quality of life. Multivariable logistic binary regression analyses were used to identify predictors of sexual dysfunction and reproductive concerns., Results: Sexual dysfunction in at least one domain was reported by 68% of the women, and a high level of reproductive concerns in at least one dimension was reported by 58%. Model results showed that current endocrine treatment was a significant predictor of dysfunction related to lubrication (OR 3.8, 95% CI 1.2-12.1) and vaginal discomfort (OR 8.7, 95% CI 1.5-51.5). Negative body image was related to satisfaction with sex life (OR 1.1, 95% CI 1.0-1.2). A high level of reproductive concerns was predicted by a wish for (additional) children in the future (OR 3.4, 95% CI 1.1-10.2) and by previous chemotherapy (OR 2.5, 95% CI 1.1-5.9)., Conclusions: Sexual dysfunction and reproductive concerns are common in young women with breast cancer. Current endocrine treatment, previous chemotherapy, a negative body image, and a wish for children in the future predict higher level of problems., (© 2018 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.)

Objective: To investigate the prevalence and predictors of cancer-related distress in younger women treated for gynaecological cancer, and to explore women's needs and experiences of psychosocial support following end-of-treatment., Methods: Data were collected from 337 gynaecological cancer survivors, 19-39years at diagnosis, using a study-specific questionnaire and the Swedish Quality Register of Gynaecologic Cancer. Predictors of distress were investigated with multivariable logistic regression analysis. Open-ended questions were analysed with content analysis., Results: The prevalence of cancer-related distress was 85% (n=286) including fear of cancer-recurrence (n=175, 61%), anxiety (n=152, 53%), depression (n=145, 51%), fear of death (n=91, 32%), concerns regarding sexuality (n=87, 34%) and fertility (n=78, 27%), and changed body image (n=78, 27%). Multi-modal treatment (OR 2.25, 95% CI 1.13-4.49) and a history of psychological distress (OR 3.44, 95% CI 1.41-8.39) predicted cancer-related distress. The majority of women experiencing distress also reported a need for support after end-of-treatment (n=205, 71%). One-third of those receiving support reported the received support as inadequate (n=55, 34%). Eight categories described reasons for not seeking support, e.g., lacked strength to seek professional support and too busy managing every-day life and, wanted help but did not know who to turn to. Four categories described reasons for not receiving sought support e.g., found it difficult to openly express feelings, psychosocial care was under-dimensioned, insufficient and unprofessional., Conclusion: Results identify the importance of support and longer-term follow-up for young survivors of gynaecological cancer. The support needs to be organised to meet this group's specific needs., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Objective: A subgroup of parents of children who have been treated for childhood cancer report high levels of psychological distress. To date there is no empirically supported psychological treatment targeting cancer-related psychological distress in this population. The aim of the current study was to test the feasibility and preliminarily evaluate the effect of individualized face-to-face cognitive behavior therapy (CBT) for parents of children after the end of treatment for childhood cancer. A secondary aim was to present a cognitive behavioral conceptualization of cancer-related distress for these parents., Methods: An open trial was conducted where 15 parents of children who had completed successful treatment for cancer three months to five years earlier and who reported psychological distress related to a child's previous cancer disease were provided CBT at a maximum of 15 sessions. Participants were assessed at baseline, post-intervention, and three-month follow-up using self-reported psychological distress (including posttraumatic stress symptoms (PTSS), depression, and anxiety) and the diagnostic Mini-International Neuropsychiatric Interview. Feasibility outcomes relating to recruitment, data collection, and delivery of the treatment were also examined. Individual case formulations for each participant guided the intervention and these were aggregated and presented in a conceptualization detailing core symptoms and their suggested maintenance mechanisms., Results: A total of 93% of the participants completed the treatment and all of them completed the follow-up assessment. From baseline to post-assessment, parents reported significant improvements in PTSS, depression, and anxiety with medium to large effect sizes (Cohen's d = 0.65-0.92). Results were maintained or improved at a three-month follow-up. At baseline, seven (47%) participants fulfilled the diagnostic criteria for major depressive disorder and four (29%) fulfilled the criteria for posttraumatic stress disorder, compared to none at a post-assessment and a follow-up assessment. The resulting cognitive behavioral conceptualization suggests traumatic stress and depression as the core features of distress, and avoidance and inactivity is suggested as the core maintenance mechanisms., Conclusion: The treatment was feasible and acceptable to the participants. Significant improvements in distress were observed during the study. Overall, results suggest that the psychological treatment for parents of children after end of treatment for childhood cancer used in the current study is promising and should be tested and evaluated in future studies., Competing Interests: The authors declare that they have no competing interests.

Background: Cancer in a child is highly distressing and some parents are at increased risk for developing posttraumatic stress symptoms (PTSS). However, the interdependence of PTSS in parental dyads has rarely been accounted for. The aim was to explore the dyadic relationship of PTSS in parents of children diagnosed with cancer., Material and Methods: The sample includes 150 parents (75 dyads) of 75 children diagnosed with cancer in Sweden during 2002-2004, with follow-up until one year after end of treatment. Data on PTSS from six assessments were included. The first three assessments were carried out during treatment and the remaining after end of treatment. Actor-partner interdependence models were estimated using a structural equation modeling approach to explore the dyadic relationship of PTSS. Actor effects refer to intra-individual dependency over time, and partner effects refer to inter-individual dependency over time, i.e., how much an individual's symptom levels are affected by their partner's symptom levels at the previous assessment., Results: Results show both actor and partner effects during the child's treatment. Only an actor effect remained following end of treatment where level of PTSS at one assessment was associated with the level of PTSS at the subsequent assessment. The association between mothers' and fathers' PTSS did not remain after end of treatment., Conclusions: Parents appear to react as an interdependent emotional system during the child's treatment but this effect disappears after end of treatment. Results suggest psychological interventions for parents during the child's cancer treatment should also be sensitive to and address the influence that distress in one partner may have on the other.

Background: A substantial proportion of parents of children on cancer treatment report psychological distress such as symptoms of post-traumatic stress (PTSS), depression, and anxiety. During their child's treatment many parents also experience an economic burden., Objective: The aim of this study was to evaluate the long-term efficacy of Internet-based guided self-help for parents of children on cancer treatment., Methods: This study was a parallel randomized controlled trial comparing a 10-week Internet-based guided self-help program, including weekly support from a therapist via encrypted email, with a wait-list control condition. The intervention was based on cognitive behavior therapy (CBT) and focused on psychoeducation and skills to cope with difficult thoughts and feelings. Primary outcome was self-reported PTSS. Secondary outcomes were self-reported symptoms of depression, anxiety, health care consumption, and sick leave during the past month. Outcomes were assessed pre- and postintervention and at 12-month follow-up. Parents of children on cancer treatment were invited by health care personnel at pediatric oncology centers, and parents meeting the modified symptom criteria on the PCL-C were included in the study. Self-report assessments were provided on the Web., Results: A total of 58 parents of children on cancer treatment (median months since diagnosis=3) were included in the study (intervention n=31 and control n=27). A total of 18 participants completed the intervention, and 16 participants in each group participated in the 12-month follow-up. Intention-to-treat analyses revealed significant effects in favor of the intervention on the primary outcome PTSS, with large between-group effect sizes at postassessment (d=0.89; 95% CI 0.35-1.43) and at 12-month follow-up (d=0.78; 95% CI 0.25-1.32). Significant effects in favor of the intervention on the secondary outcomes depression and anxiety were also observed. However, there was no evidence for intervention efficacy on health care consumption or sick leave., Conclusions: Using the Internet to provide psychological interventions shows promise as an effective mode of delivery for parents reporting an increased level of PTSS and who consider Internet-based interventions as a viable option. Future research should corroborate these findings and also develop and evaluate interventions and policies that may help ameliorate the economic burden that parents may face during their child's treatment for cancer., (©Martin Cernvall, Per Carlbring, Anna Wikman, Lisa Ljungman, Gustaf Ljungman, Louise von Essen. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 27.07.2017.)

Background: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment (ST)/child's death (T7) compared with one year after end of ST/child's death (T6) and the association between partial post-traumatic stress disorder (PTSD) and work situation and sick leave at T7. Participants and procedure: The sample included 152 parents of survivors (77 mothers, 75 fathers) and 42 bereaved parents (22 mothers, 20 fathers) of children diagnosed with cancer in Sweden., Results: The proportions of parents working or reporting sick leave did not differ among mothers and fathers of survivors (92% vs. 96% working, 20% vs. 18% on sick leave) or among bereaved mothers and fathers (91% vs. 90% working, 14% vs. 20% on sick leave) at T7. There was no change from T6 to T7 in the proportion of fathers working (fathers of survivors 91% vs. 96%, bereaved fathers 95% vs. 90%). Although more mothers of survivors (92% vs. 82%) and bereaved mothers (91% vs. 77%) worked at T7 than at T6, this increase was not significant. Fewer bereaved mothers reported sick leave at T7 than at T6 (14% vs. 59%, p < 0.05). Although more fathers reported sick leave at T7 than at T6 (fathers of survivors 18% vs. 8%, bereaved fathers 20% vs. 15%), this was not significant. Partial PTSD was not associated with parents' work situation or sick leave at T7., Conclusion: Results suggest little adverse effect on work situation and sick leave among parents of survivors and bereaved parents five years after end of ST/child's death from cancer. However, the pattern of change observed differed between parents, which could potentially indicate possible delayed consequences for fathers not captured in the present paper.

Objective: To describe the experience of parenting a child diagnosed with cancer by examining particularly negative and positive experiences reported by parents of childhood cancer survivors and parents of children lost to cancer., Methods: 168 parents (88 mothers, 80 fathers) participated. Data were collected five years after the end of successful treatment or the child's death. The parents' experiences were identified by open-ended semi-structured questions about particularly negative and positive experiences of the child's cancer. An inductive approach was used in which the manifest verbal content of the answers was analysed using content analysis., Results: The analysis revealed eight categories of negative experience (child late effects; distressing events; healthcare; impaired relationships; long-term psychological consequences; own reactions; surrounding institutions; the fact that the child got cancer) and seven categories of positive experience (healthcare; improved relationships; long-term consequences for the child; personal development; support systems; treatment outcome; unexpected joy). The categories were related to past events or to the present situation. The findings indicate variations in experiences between parents of survivors and bereaved parents, and between fathers and mothers, as some experiences were only reported by parents of survivors and some experiences were only reported by mothers., Conclusions: The results highlight the importance of past and present events to parents, and accordingly the long-lasting impact of paediatric cancer on parents. The results also point to the wide range of negative as well as positive experiences involved in parenting a child diagnosed with cancer, and provide a comprehensive understanding of the overall experience for parents of children with cancer. Specifically, the findings give guidance to healthcare providers by illustrating the need to provide healthcare personnel with continuous training in communication skills, offering parents opportunities to meet other parents in the same situation and increasing the access to psychosocial supportive services and psychological care.

Background: Increased understanding of the relationships between different symptom clusters involved in posttraumatic stress symptoms (PTSS) could guide empirical research and clinical practice. The objective of the present study was to investigate whether hyperarousal and avoidance mediated the relationship between re-experiencing and dysphoria in parents of children diagnosed with cancer., Methods: Longitudinal data from parents of children receiving cancer therapy were used. PTSS were assessed using the PTSD Checklist Civilian Version at one week (T1), two (T2) and four months (T3) after diagnosis. Mediation analyses for multiple mediators were conducted for mothers (n = 122) and fathers (n = 121), respectively. The mediation model tested the assumption that the PTSS symptom clusters hyperarousal and avoidance mediated the relationship between re-experiencing and dysphoria., Results: For fathers, none of the hypothesized mediators were significant. For mothers, hyperarousal mediated the relationship between re-experiencing and dysphoria, but avoidance did not., Conclusions: Results suggest that hyperarousal is important for the development of dysphoria in mothers, supporting use of interventions targeting such symptoms in the early and ongoing period following the child's diagnosis.

Objectives: To investigate whether posttraumatic stress symptoms (PTSS) are related to attentional bias towards cancer-related stimuli among parents of children recently diagnosed with cancer., Methods: Sixty-two parents completed questionnaires measuring PTSS, depression, and anxiety and the emotional Stroop task via the Internet. The emotional Stroop task included cancer-related words, cardiovascular disease-related words, and neutral words., Results: Participants were split in two groups based on the median of PTSS: High-PTSS and Low-PTSS. There was a significant interaction between word-type and group and a planned contrast test of this interaction indicated that the High-PTSS group had longer response latencies on cancer-related words compared to the other word-type and group combinations., Conclusions: Findings suggest that PTSS are related to attentional bias towards cancer-related stimuli among parents of children recently diagnosed with cancer. Implications of this finding for the understanding of PTSS in this population, future research, and clinical practice are discussed.

We conducted a cross-sectional survey study to investigate whether there is a relationship between experiential avoidance (EA), rumination, post-traumatic stress symptoms (PTSS), and symptoms of depression, in parents of children on cancer treatment. Data from 79 parents (55 mothers) of 79 children with a median of three months since their cancer diagnosis were included in cross-sectional analyses. EA and rumination were positively correlated with PTSS and symptoms of depression. EA and rumination did not provide incremental explained variance in PTSS over and above that explained by symptoms of depression, while controlling for symptoms of anxiety and demographic characteristics. However, EA and rumination provided incremental explained variance in symptoms of depression over and above that explained by PTSS, while controlling for symptoms of anxiety and demographic characteristics. Rumination and EA are important constructs in the understanding of PTSS and symptoms of depression in parents of children on cancer treatment. Future research should delineate the temporal relationships between these constructs.

Background: A lack of longitudinal studies has hampered the understanding of the development of posttraumatic stress symptoms (PTSS) in parents of children diagnosed with cancer. This study examines level of PTSS and prevalence of posttraumatic stress disorder (PTSD) from shortly after diagnosis up to 5 years after end of treatment or child's death, in mothers and fathers., Methods: A design with seven assessments (T1-T7) was used. T1-T3 were administered during treatment and T4-T7 after end of treatment or child's death. Parents (N = 259 at T1; n = 169 at T7) completed the PTSD Checklist Civilian Version. Latent growth curve modeling was used to analyze the development of PTSS., Results: A consistent decline in PTSS occurred during the first months after diagnosis; thereafter the decline abated, and from 3 months after end of treatment only minimal decline occurred. Five years after end of treatment, 19% of mothers and 8% of fathers of survivors reported partial PTSD. Among bereaved parents, corresponding figures were 20% for mothers and 35% for fathers, 5 years after the child's death., Conclusions: From 3 months after end of treatment the level of PTSS is stable. Mothers and bereaved parents are at particular risk for PTSD. The results are the first to describe the development of PTSS in parents of children diagnosed with cancer, illustrate that end of treatment is a period of vulnerability, and that a subgroup reports PTSD 5 years after end of treatment or child's death., (© 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Objective: The aim of the study was to investigate the feasibility and preliminary efficacy of an Internet-based guided self-help intervention for posttraumatic stress symptoms (PTSS) and related symptoms in parents of children on cancer treatment., Methods: Parents of children on cancer treatment, who fulfilled the modified symptom criteria on the PTSD Checklist, were randomly allocated to the intervention or to a wait-list control condition. The intervention group accessed a 10-week guided self-help program via the Internet based on principles from cognitve behavior therapy. The primary outcome PTSS and the secondary outcomes depression and anxiety were assessed by self-report preintervention and postintervention., Results: Seven hundred forty-seven parents were approached and informed about the study, 92 were assessed for eligibility, and 58 were included and randomized to the intervention (n = 31) or wait list (n = 27). Eightteen participants completed the intervention. Intention-to-treat analyses indicated a significant effect of the intervention on PTSS with a large between-group effect size at postassessment (Cohen's d = 0.88). The intervention group reported reductions in PTSS with a large within-group effect size (d = 1.62) compared with a minimal reduction in the wait-list group (d = 0.09). There was a significant intervention effect on depression and anxiety and reductions in the intervention group with large within-group effect sizes (d = 0.85-1.09)., Conclusions: Findings indicate a low enrollment rate and considerable attrition but also that Internet-based guided self-help shows promise for parents of children on cancer treatment who report a high level of PTSS and would like to take part in an Internet-based intervention., (© 2015 The Authors. Psycho-Oncology published by John Wiley & Sons, Ltd.)

Increasing survival rates in childhood cancer have yielded a growing population of parents of childhood cancer survivors (CCSs). This systematic review compiles the literature on positive and negative long-term psychological late effects for parents of CCSs, reported at least five years after the child's diagnosis and/or two years after the end of the child's treatment. Systematic searches were made in the databases CINAHL, EMBASE, PsycINFO, and PubMed. Fifteen studies, published between 1988 and 2010, from 12 projects were included. Thirteen studies used quantitative methodology, one quantitative and qualitative methodology, and one qualitative methodology. A total of 1045 parents participated in the reviewed studies. Mean scores were within normal ranges for general psychological distress, coping, and family functioning. However, a substantial subgroup reported a clinical level of general psychological distress, and 21-44% reported a severe level of posttraumatic stress symptoms. Worry, disease-related thoughts and feelings, marital strains, as well as posttraumatic growth was reported. Several factors were associated with the long-term late effects, such as parents' maladaptive coping during earlier stages of the childs disease trajectory and children's current poor adjustment. Quality assessments of reviewed studies and clinical implications of findings are discussed and recommendations for future research are presented.