Educational outcomes school year nine in children treated for acute lymphoblastic leukemia: A nationwide registry-based study from Sweden.

Acute lymphoblastic leukemia (ALL) constitutes approximately 25% of pediatric cancers, and with contemporary protocols, the 5-year survival rate is over 90%. Despite improved survival, neurocognitive impairments from treatment raise concerns. This registry study aimed to explore the impact of ALL treatment on educational outcomes from school year nine in Swedish children. A population-based cohort of 503 children diagnosed with ALL from 1990 to 2010 was identified from the Swedish Childhood Cancer Registry and matched with five controls each. Assessed variables were delayed graduation, high school eligibility, total merit value, school grades in Swedish, English, mathematics, and physical education, and results in national tests. Analyses were performed between cases and controls and by sex, age at diagnosis, and risk group. Our results showed that, compared to controls, cases had higher odds for delayed graduation, poorer results in physical education, and higher rates of absence in national tests in English and mathematics. Children in the standard-risk group (treated with first-line chemotherapy only) exhibited similar results to matched controls whereas children in the high-risk group (treated with cranial irradiation, hematological stem cell transplantation, or/and for ALL relapse and thus likely received also radiotherapy) had lower total merit value compared to controls. We conclude that Swedish children diagnosed with ALL between the years 1990-2010 mainly exhibited comparable educational outcomes to controls, although children in the high-risk group had lower results. These findings highlight the importance of evaluating especially children with high-risk ALL in order to identify those requiring educational support and for designing targeted interventions.

Losing a parent to suicide: Posttraumatic stress, sense of coherence and family functioning in children, adolescents and remaining parents before attending a grief support program.

Parental suicide in childhood increases the risk of mental ill-health, substance use and premature mortality, particularly through suicide. Postvention supports tailored to the well-being and functioning of suicide-bereaved children and their remaining parents are thus of critical importance to counteract negative development. This explorative cross-sectional study seeks clinically relevant knowledge by investigating posttraumatic stress (PTS), sense of coherence (SOC) and family functioning among children (n = 22), adolescents (n = 18) and parents (n = 40) before their attendance at a family-based grief support program. The results demonstrate critical health outcomes for children and parents, and in particular for adolescents. Clinically relevant symptoms of PTS were found in 36% of children, 65% of adolescents, and 37% of parents. All groups showed lower SOC than the norm. Adolescents reported dysfunctional family functioning for the dimensions Communication and Affective Responsiveness. Psychoeducational and trauma-informed support is recommended where family communication and meaning construction of suicide is given special attention.

Facilitators and barriers to return to work and meet financial needs in parents of children with cancer.

BACKGROUND: The aim of this study was to explore what facilitators and barriers parents of children with cancer identify for their ability to return to work and meet financial needs. PROCEDURE: Nine focus groups (21 mothers; 11 fathers) were performed across Sweden in 2015 and 2019. A deductive content analysis approach was used. A preconstructed matrix consisting of 12 codes based on previous literature was used to organize the data. The codes were grouped into subcategories, which were abstracted to four generic categories. RESULTS: Facilitators for a return to work were covered in the category "Flexibility and understanding from employers and social services," and barriers in the category "Pressure to return without consideration of the consequences." Facilitators to meeting financial needs were covered in the category "Available public, private, and employer support," and barriers in the category "Lack of organized and efficient support from employers and social services." CONCLUSIONS: The identified barriers suggest that there is room for improvement in the provision of psychosocial support, which relates to a perceived lack of organized support regarding practical, financial, and occupational matters. The results show a need for a coordinated support system that includes major stakeholders, such as the health care, welfare agencies, and employers. Moreover, employers should consider how to implement more workplace flexibility and involvement of occupational health services. Importantly, to be able to return to work and achieve a sustainable financial situation, it is necessary for all stakeholders to recognize the long-term impact of parenting a child with cancer.

Increased risk of mental health problems after cancer during adolescence: A register-based cohort study.

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.

Parents' needs of support following the loss of a child to cancer: a Swedish, prospective, longitudinal, multi-centre study.

Introduction: Parents' needs of support following the loss of a child to cancer and whether these needs are met are not fully known. This study aimed to describe parents' needs, opportunity, and benefit of support from healthcare professionals and significant others from shortly after, up to five years after bereavement.Material and methods: Data were collected at nine months (T5, n = 20), eighteen months (T6, n = 37), and five years after the child's death (T7, n = 38). Parents answered questions via telephone about need, opportunity, and benefit of talking to psychologists, social workers, partners, and friends. Needs were examined in relation to parent and child characteristics, including sex, age, and parent posttraumatic stress symptoms (PTSS).Results: The proportion reporting a need of support from psychologists varied from 56% and 46% at T5 to 20% and 6% at T7 (mothers and fathers, respectively). All mothers and 90% of fathers reported a need of support from social workers at T5. At T7, the corresponding percentages were 30% and 6%. More mothers than fathers reported a need of support from friends at T7 (p = .001). The proportion reporting a need of support from psychologists, social workers, and friends decreased over time (all p ≤ .050). Parents reporting a higher level of PTSS were more likely to report a need of support from social workers at T6 (p = .040) and from psychologists (p = .011) and social workers (p = .012) at T7. Opportunities for support from healthcare professionals varied, most reported need of and opportunity for support from significant others. Almost all reported benefit from received support.Conclusion: Bereaved parents need and benefit of support from healthcare professionals and significant others. Results show a need for improved access to psychosocial services, even at five years post bereavement. Large-scale studies are needed to better understand the associations between parent and child characteristics and support needs.

Trajectories of income and social benefits for mothers and fathers of children with cancer: A national cohort study in Sweden.

BACKGROUND: The contribution of different income sources from work and social benefits to trajectories of income for the parents of children with cancer has not been empirically investigated. METHODS: Using Swedish registers, parents of children with an incidence cancer diagnosis between 2004 and 2009 were identified and matched with parents of children without cancer (reference parents). A total of 20,091 families were followed from the year before the diagnosis to a maximum of 8 years. Generalized linear models estimated the ratios of mean incomes from work and social benefits and of its total. RESULTS: Around the time of the child's cancer diagnosis, the total income was on average up to 6% higher among the mothers of children with cancer compared with reference mothers, but no differences were noted among fathers. Income from work dropped to the lowest level around the time of a cancer diagnosis, with swift recovery noted for fathers but not for mothers. Sickness and childcare-related benefits were up to 6 times larger for the parents of children with cancer than reference parents. As social benefits diminished after approximately 3 years, the total income of mothers of children with cancer became lower than that of reference mothers, and the gap widened over time. CONCLUSIONS: Social benefits appeared to ease the financial burden during the years around a cancer diagnosis. However, mothers experienced persistently lower income after benefits diminished. Experiences differed by single-parent versus dual-parent households, the survival of the child with cancer, and other relevant characteristics. Further investigation is needed for potential long-term consequences for mothers, including their career and future pension in retirement. Cancer 2018;124:1492-500. © 2018 American Cancer Society.

Prevalence and predictors of symptoms of anxiety and depression, and comorbid symptoms of distress in parents of childhood cancer survivors and bereaved parents five years after end of treatment or a child's death.

BACKGROUND: Symptoms of anxiety and depression and their comorbidity in parents of children diagnosed with cancer, particularly later in the cancer trajectory, need further study. The aim was to investigate the prevalence and predictors of symptoms of anxiety and depression in parents of childhood cancer survivors and bereaved parents, five years after end of treatment or a child's death and to investigate comorbidity between symptoms of anxiety, depression and posttraumatic stress. MATERIAL AND METHODS: Participants were 132 parents (68 mothers, 64 fathers) of survivors and 37 bereaved parents (20 mothers, 17 fathers). Chi-square test and t-test were used to explore differences in symptoms of anxiety and depression. Comorbidity was explored using Pearson's correlations and Chi-square test. Multivariable hierarchical linear regressions were used to identify predictors of symptoms of anxiety and depression. RESULTS: In parents of survivors, 20% reported anxiety and 14% reported depression. Corresponding figures among bereaved parents were 30% and 35%. Among parents of survivors reporting clinically relevant anxiety and depression, a larger proportion were mothers than fathers. No such difference was found among bereaved parents. Symptoms of anxiety, depression and posttraumatic stress were highly correlated (all r ≥ 0.65, p < .001). Comorbid symptoms were reported by 7-11% of parents of survivors and 14-24% of bereaved parents. In multivariable analyses, more severe symptoms of depression were associated with anxiety, posttraumatic stress and distress related to previous stressful life events. Being a mother, symptoms of depression and posttraumatic stress were associated with more severe symptoms of anxiety. CONCLUSION: A subset of parents report clinically elevated symptoms of anxiety and depression, comorbid anxiety, depression and posttraumatic stress. Experiencing distress related to previous stressful life events as well as concurrent comorbidity were associated with more severe psychological distress at five years after end of treatment/a child's death. These results deserve further attention in research and clinical care.

Information needs of survivors and families after childhood CNS tumor treatment: a population-based study.

BACKGROUND: This study examines information needs and satisfaction with provided information among childhood central nervous system (CNS) tumor survivors and their parents. MATERIAL AND METHODS: In a population-based sample of 697 adult survivors in Sweden, 518 survivors and 551 parents provided data. Information needs and satisfaction with information were studied using a multi-dimensional standardized questionnaire addressing information-related issues. RESULTS: Overall, 52% of the survivors and 48% of the parents reported no, or only minor, satisfaction with the extent of provided information, and 51% of the survivors expressed a need for more information than provided. The information received was found useful (to some extent/very much) by 53%, while 47% did not find it useful, or to a minor degree only. Obtaining written material was associated with greater satisfaction and usefulness of information. Dissatisfaction with information was associated with longer time since diagnosis, poorer current health status and female sex. The survivors experienced unmet information needs vis-à-vis late effects, illness education, rehabilitation and psychological services. Overall, parents were more dissatisfied than the survivors. CONCLUSION: These findings have implications for improvements in information delivery. Information in childhood CNS tumor care and follow-up should specifically address issues where insufficiency was identified, and recognize persistent and with time changing needs at the successive stages of long-term survivorship.

Short-term and long-term effects of childhood cancer on income from employment and employment status: A national cohort study in Sweden.

BACKGROUND: There is insufficient knowledge regarding the economic impact of childhood cancer on parents. The objectives of the current study were to investigate the short-term and long-term effects of childhood cancer on mothers' and fathers' income from employment and employment status. METHODS: The study sample consisted of the parents of children diagnosed with cancer from 2004 to 2009 in Sweden (3626 parents of 1899 children). Annual register data concerning income from employment and employment status (employed/not employed) were retrieved from the Longitudinal Integration Database for Health Insurance and Labor Market Studies. Using generalized linear models, the mean income from employment and employment status were compared with a matched control cohort of 34,874 parents sampled from the general population. RESULTS: Parents' income was found to decrease significantly after the child's cancer diagnosis. The effect was most pronounced for mothers, whose income was reduced for 6 years after diagnosis, whereas fathers' income was similar to that of control fathers 3 years after the diagnosis. Mothers were more likely to stop working after a child's cancer diagnosis compared with controls. No association was found for fathers' employment status. Younger age of parents; lower level of education; and, among mothers, being born outside of Sweden were found to be associated with more adverse effects on income. CONCLUSIONS: Parents' income from employment and employment status appear to be adversely affected by having a child with cancer. Socioeconomic consequences are not distributed equally: the income of fathers appears to catch up after a few years, whereas mothers tend to be disadvantaged in their professional life for several years after a child's cancer diagnosis. Cancer 2017;123:1238-1248. © 2016 American Cancer Society.

Perceptions of support among Swedish parents of children after end of successful cancer treatment: a prospective, longitudinal study.

INTRODUCTION: Most children survive childhood cancer, however parenting a child diagnosed with cancer is a major challenge. The main aim of the current study was to describe Swedish parents' need, opportunity and benefit of support from healthcare professionals and significant others after end of a child's successful cancer treatment. MATERIAL AND METHODS: Data was collected from approximately one week after end of successful treatment/six months after transplantation (T4, n = 212) up to five years thereafter (T7, n = 137). Parents answered questions via telephone about need, opportunity and benefit of talking to psychologists, social workers, partners and friends. RESULTS: The proportion reporting need of support from healthcare professionals varied between 73% (mothers' need of support from social workers, T4) and 7% (fathers' need of support from psychologists/social workers, T7). Need of support from significant others varied between 99% (mothers' and fathers' need of support from partners, T4) and 27% (fathers' need of support from friends, T7). The proportion reporting need of support decreased over time (p < .001), no decrease occurred from three months after end of treatment/nine months after transplantation (T5) to one year after end of treatment/18 months after transplantation (T6). More mothers than fathers reported need of support from friends at T5 (p < .001) and T7 (p < .05) and from psychologists at T7 (p < .05). Opportunities for support from healthcare professionals varied, most reported opportunity for support from significant others. Almost all reported benefit from received support. CONCLUSION: A declining number reports a need of support over time, however subgroups report an unmet need and almost every parent perceive support from healthcare professionals as beneficial. More parents should get access to psychosocial support services after end of a child's cancer treatment/transplantation.

Impact of a child's cancer disease on parents' everyday life: a longitudinal study from Sweden.

BACKGROUND: A child's cancer disease may disrupt the daily life of the affected family for a long period. The aim was to describe restrictions on parents' leisure activities and work/studies during and after the child's treatment. METHODS: This study used data from a cohort of mothers and fathers (n = 246) of children diagnosed with cancer. Data was collected five times from two months after diagnosis to one year after end of treatment. Reports of restrictions were evaluated over time, between mothers and fathers, and in relation to parent-reported child symptom burden (The Memorial Symptom Assessment Scale) and partial post-traumatic stress disorder (PTSD) (The PTSD Checklist-Civilian Version). RESULTS: Two (51%) and four (45%) months after diagnosis, about half reported that their leisure activities were restricted at least some of the time. Corresponding percentages for restrictions on work/studies were 84% and 77%. One year after end of treatment, the great majority reported that their leisure activities (91%) and/or work/studies (76%) were never/seldom restricted. During treatment, more mothers than fathers reported restrictions on work/studies all/most of the time. After end of treatment, gender was only related to reports of restrictions among parents not reporting partial PTSD. More parents who reported being restricted all/most of the time also reported partial PTSD and/or a greater symptom burden for the child. CONCLUSION: Parents report frequent restrictions on everyday life during treatment. One year after end of treatment, parents report only a limited impact of the child's cancer on their leisure activities and work/studies. More parents who report restrictions also report partial PTSD and/or a greater child symptom burden. The effect of gender on restrictions varies depending on reports of partial PTSD. Future studies of gender differences regarding the impact of a child's cancer on parents' everyday life should thus consider mothers' and fathers' level of psychological distress.

Sick leave among parents of children with cancer - a national cohort study.

BACKGROUND: Due to psychological distress and an increased care burden, parents of children diagnosed with cancer may face a higher risk of sickness absence from work. The objective of this study was to examine the association of childhood cancer with parents' sick leave. MATERIAL AND METHODS: The sample comprised 3626 parents of 1899 children diagnosed with cancer in Sweden during 2004-2009, and a matched control group of parents (n = 34 874). Sick leave was measured as number of days with sickness benefit, retrieved from national registries. Logistic and negative binomial regression models were used to compare outcomes with parents from the control cohort. RESULTS: The risk of sick leave was statistically significantly higher up to six years following a child's cancer diagnosis. The increase in number of days with sickness benefit was most pronounced the year after diagnosis. Although mothers' sick leave prevalence was higher, the increase in risk relative to control parents was similar for mothers and fathers. Bereavement was associated with a heightened risk of sick leave, especially on the year of the child's death. CONCLUSIONS: Findings confirm that mothers and fathers of children diagnosed with cancer are at higher risk of sickness absence from work, with particularly pronounced risk among bereaved parents. Acquisition of further knowledge is warranted regarding possibilities and constraints of parents trying to combine their work life with caring for both their child and themselves.

Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study.

BACKGROUND: U-CARE is a multidisciplinary eHealth research program that involves the disciplines of caring science, clinical psychology, health economics, information systems, and medical science. It was set up from scratch in a university setting in 2010, funded by a governmental initiative. While establishing the research program, many challenges were faced. Systematic documentation of experiences from establishing new research environments is scarce. OBJECTIVE: The aim of this paper was to describe the challenges of establishing a publicly funded multidisciplinary eHealth research environment. METHODS: Researchers involved in developing the research program U-CARE identified challenges in the formal documentation and by reflecting on their experience of developing the program. The authors discussed the content and organization of challenges into themes until consensus was reached. RESULTS: The authors identified 15 major challenges, some general to establishing a new research environment and some specific for multidisciplinary eHealth programs. The challenges were organized into 6 themes: Organization, Communication, Implementation, Legislation, Software development, and Multidisciplinarity. CONCLUSIONS: Several challenges were faced during the development of the program and several accomplishments were made. By sharing our experience, we hope to help other research groups embarking on a similar journey to be prepared for some of the challenges they are likely to face on their way.

Parents of children diagnosed with cancer: work situation and sick leave, a five-year post end-of-treatment or a child's death follow-up study.

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.

Does time heal all wounds? A longitudinal study of the development of posttraumatic stress symptoms in parents of survivors of childhood cancer and bereaved parents.

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.

Persistent impact of illness on families of adult survivors of childhood central nervous system tumors: a population-based cohort study.

OBJECTIVE: This study aims to determine the long-term impact on families of adult survivors of childhood central nervous system tumors. Illness-related family consequences were studied in relation to modifying determinants. METHODS: In a population-based cohort of parents of 697 survivors 18 years and older, 551 parents provided data. The impact of cancer on the families was evaluated in four domains using the Impact on Family Scale (economic situation, personal burden, social life, sibling impact). The results were analyzed in relation to survivors' health assessed using the Health Utilities Index™, parent satisfaction with information about illness and treatment, and perceived health-care needs of their child. RESULTS: Despite an established mild-to-moderate impact on the group level, outcomes provided evidence of substantial cancer-related family consequences even once the child had reached adulthood. About one fifth of parents reported psychological and financial difficulties exceeding the cutoff limit for a significant impact still ≥ 5 years after diagnosis. A stronger total family impact was associated with poorer health of survivors (F[3,302] = 56.65, p < 0.001), and unmet informational - (F[3,231] = 14.06, p < 0.001) and health-care needs (t(218) = 5.31, p < 0.001). The impact was unrelated to survivors' age at follow-up and time since diagnosis. CONCLUSIONS: Adverse cancer-related consequences affect a considerable portion of families of childhood survivors of central nervous system tumor, even after reaching adulthood. The impact is aggravated by lasting sequelae and perceived shortcomings of long-term follow-up, factors that partly are avoidable. Improved clinical follow-up should particularly address illness information and long-term health-care needs to reduce the impact on families of survivors suffering from chronic health conditions.

A longitudinal assessment of work situation, sick leave, and household income of mothers and fathers of children with cancer in Sweden.

BACKGROUND: The diagnosis of childhood cancer often results in an altered life situation for the parents, characterized by difficulties regarding work, family and household demands. Previous research shows that parents' work situation and income are impacted, yet, few studies have explored the issue from a longitudinal perspective. This study sought to increase the knowledge about the socio-economic conditions of parents of children with cancer in Sweden by means of a longitudinal assessment of work situation, sick leave, and household income. MATERIAL AND METHODS: The sample consisted of mothers (n = 139) and fathers (n = 138) of children with cancer recruited from 2002 to 2004. Data was collected by telephone interviews at six time points, ranging from the time of diagnosis to one year after the end of treatment. RESULTS: Findings showed that parents' work situation was most evidently impacted during the child's treatment, when the greatest proportions of non-working and sick-listed parents were found. Compared with the time of diagnosis, fewer mothers worked up to three months after the end of treatment, and more mothers were on sick leave one year after the end of treatment. Although the extent of sick leave among fathers did not differ compared with the time of diagnosis, fewer fathers worked one year after the end of treatment. Household income was significantly reduced during the child's treatment and months thereafter, while income was at an equal level as before the diagnosis for most families one year after the end of treatment. CONCLUSION: The results offer a unique understanding of how mothers' and fathers' work situation and income are impacted in the short- and long-term, and give guidance on how to improve the comprehensive support given to parents of children with cancer. Socio-economical issues should be emphasized as these may provide targets for policy interventions aiming to reduce parental strain related to work and finances.

Psychosocial interventions targeting parenting distress among parents with cancer - A systematic review and narrative synthesis of available interventions.

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.

Psychometric evaluation of the Swedish version of the PROMIS Sexual Function and Satisfaction Measures in clinical and nonclinical young adult populations.

Background: The Patient-Reported Outcomes Measurement Information System (PROMIS®) Sexual Function and Satisfaction (SexFS) version 2.0 measurement tool was developed to assess sexual functioning and satisfaction in the general population regardless of health condition and sexual orientation. Aim: The study aimed to evaluate the psychometric properties of the Swedish version of the PROMIS SexFS measure in clinical and nonclinical populations of young adults (aged <40 years). Methods: The SexFS was answered by a clinical population of young adult women (n = 180) and men (n = 110) with breast cancer and testicular cancer, respectively, and a nonclinical population of young adult women (n = 511) and men (n = 324) from the general population. Psychometric properties were evaluated by examining data quality (score distribution, floor and ceiling effects, proportion of missing data), construct validity (corrected item, total correlation, scaling success), and reliability (Cronbach α). Outcomes: The following domains of the SexFS 2.0 were investigated: Vaginal Lubrication, Vaginal Discomfort, Vulvar Discomfort- Clitoral, Vulvar Discomfort- Labial, Erectile Function, Interest in Sexual Activity, Satisfaction With Sex Life, Orgasm- Ability, and Orgasm- Pleasure. Results: The Swedish version of the SexFS 2.0 generated data of acceptable quality. Some noteworthy floor or ceiling effects were identified across domains and respondent groups. Corrected item totals were used to express the coherence between an item and the other items in the domain. The correlation coefficients were above 0.40 for all items, except for 1 of the items within the Vaginal Discomfort domain and for the items in the Erectile Function domain in the nonclinical group of men. High proportions of scaling success were noted across domains (96%-100%). Reliability was satisfactory (α = 0.74-0.92) for all domains, expect for Erectile Function of the nonclinical group (α = 0.53), due to low variability in item responses, which was improved somewhat (α = 0.65) when combined with the clinical group. Clinical Implications: A flexible tool to measure self-reported sexual function and satisfaction in young men and women is available for researchers and clinicians in Sweden. Strengths and Limitations: The nationwide population-based sample of patients with cancer, identified from national quality registers, minimized selection bias. However, men in the general population had a lower response rate (34%) compared to the other groups, which introduced a risk of bias in estimates. The psychometric evaluation was limited to young adults (aged 19-40 years). Conclusion: The results provide evidence for the validity and reliability of the Swedish version of the SexFS measure for the assessment of sexual functioning and satisfaction in young adults from both clinical and nonclinical populations.

The Complexity of Being a Parent in the Hospital and a Patient at Home: A Qualitative Study on Parenting Concerns and Challenges Among Parents With Cancer.

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.