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.

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.

Losing a child to adolescent cancer: A register-based cohort study of psychotropic medication use in bereaved parents.

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.

Psychotropic medication use in parents of survivors of adolescent cancer: A register-based cohort study.

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: HRadj 1.71, 95% CI 1.30-2.25; fathers: HRadj 1.57, 95% CI 1.10-2.45) and hypnotics/sedatives (mothers: HRadj 1.53, 95% CI 1.23-1.90; fathers: HRadj 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 (HRadj 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 (HRadj 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.

Sexual dysfunction in young adult survivors of childhood cancer - A population-based study.

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.

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.

Neurocognitive impairment, employment, and social status in radiotherapy-treated adult survivors of childhood brain tumors.

BACKGROUND: Little is known of the cognitive functions, employment, and social status in adult survivors of childhood brain tumor (BT). We aimed to determine the long-term neurocognitive profile of radiotherapy-treated adult survivors of childhood BT and the relationship between cognitive functions and employment and social status. METHODS: Neurocognitive profiles of survivors were assessed in a Finnish national cohort of 71 radiotherapy-treated survivors of childhood BT (median follow-up time: 21 years [range: 5-33 years]) using a cross-sectional design. Neurocognitive outcomes were compared to control (n = 45) and normative values. Tumor- and treatment-related data were collected from the patient files. Information on employment and social status was gathered. RESULTS: Survivors' (median age: 27 years [range: 16-43 years]) median verbal and performance intelligence quotient (IQ) was 90 (range: 49-121) and 87 (range: 43-119), respectively. The cognitive domains with the greatest impairment were executive functions (median z score, -3.5 SD [range: -25.0 to 1.3 SD]), and processing speed and attention (median z score, -2.5 SD [range: -24.9 to 0.5 SD]). Executive functions were associated with employment, educational level, living independently, having an intimate relationship, and having a driving license. Processing speed and attention were related to educational level, living independently, having an intimate relationship, and having a driving license. Performance IQ was associated with educational level and employment status. Working memory was associated with educational level and living independently. CONCLUSIONS: Radiotherapy-treated adult survivors of childhood BT experience significant neurocognitive impairment, which is associated with difficulties related to employment and social status.

"There should be some kind of checklist for the soul"- A qualitative interview study of support needs after end of treatment for gynecologic cancer in young women.

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.

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.

What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration.

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

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.

Feeling excluded and not having anyone to talk to: Qualitative study of interpersonal relationships following a cancer diagnosis in a sibling.

PURPOSE: To explore experiences related to interpersonal relationships following a cancer diagnosis in a sibling. METHODS: Respondents (n = 7 females) were recruited by means of convenience sampling during a camp for children affected by childhood cancer and their siblings. Data from children and adolescents with a sibling diagnosed with cancer was collected through individual face-to-face interviews and analyzed using systematic text condensation. RESULTS: Two categories portrayed the experiences related to interpersonal relationships following a cancer diagnosis in a sibling. Feeling excluded while wanting to maintain a relationship with their ill sibling and be involved in the care portrayed that trying to be involved in the care of their ill sibling was a stressful and difficult experience, since they were simultaneously expected to also manage household chores and attend school. Feeling stigmatized and exposed in social contexts while needing an allowing space to talk about their experiences portrayed the emotional difficulties evoked by social situations and behaviors of others, which left respondents feeling exposed and mistreated. Having the possibility to talk about their experiences and receiving social support was described as essential in order to cope with the situation. CONCLUSIONS: Health professionals need to take into consideration the emotional difficulties and vulnerable situation that children and adolescents who have a sibling diagnosed with cancer are at risk of experiencing. Stigmatization and social exposure present a risk of psychological distress. Having an allowing space to communicate feelings and experiences is desired. Interventions may be necessary to help these individuals psychologically cope.

Psychological distress in parents of children treated for cancer: An explorative study.

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.

Exploration of psychological distress experienced by survivors of adolescent cancer reporting a need for psychological support.

OBJECTIVE: In this qualitative study, we aimed to provide an in-depth exploration of cancer-related psychological distress experienced by young survivors of cancer during adolescence reporting a need for psychological support. METHODS: Two individual interviews were held with ten young survivors of cancer diagnosed in adolescence. The interviews were audio-recorded and transcribed verbatim. Analysis followed the guidelines for inductive qualitative manifest content analysis. RESULTS: The survivors described distress experienced during and after the end of treatment. Five categories comprising 14 subcategories were generated. The categories included: A tough treatment, Marked and hindered, Not feeling good enough, Struggling with the fragility of life, and finally, An ongoing battle with emotions. CONCLUSION: Young survivors of adolescent cancer reporting a need for psychological support described feeling physically, socially, and mentally marked by the cancer experience. They struggled with powerlessness, insecurity, social disconnection, loneliness, and feelings of being unimportant and a failure, and had difficulties understanding and managing their experiences. These concerns should be addressed in psychological treatments for the population irrespective of which approach or model is used to understand survivors' difficulties. A trans-diagnostic approach targeting processes that underpin different manifestations of distress may be effective.

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.

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.

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.

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.

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.