This autoethnographic account explores my experiences of healing with my daughter and two sons after childhood cancer. My goal was to understand the disconnect between my experiences of persisting fear, grief and trauma and the contradictory messages we encountered during treatment that urged us to resume our ‘normal lives’ at the end of treatment. In analyzing my story, juxtaposed with other anthropologists’ narratives of their journey through cancer and beyond, I realized that my experiences were mediated by prevalent war metaphors in illness; the pervasive social and medical messages and expectations of restitution; as well as narrow biomedical un- derstandings of illness and healing. I offer up my story with the intention of bridging the divide between patients, their family, and medical professionals.

This study examines the risk of cancer in children of pesticide applicators from the Agricultural Health Study. The study includes 36,537 children of Iowa participants who were evaluated for cancer incidence during 1975 through 2013 from birth through the age of seventeen. Standard incidence rates for any cancer and specific groups of cancers classified using the International Classification of Childhood Cancer was calculated using rates from the general population of Iowa controlling for year of follow, age, sex, and race. Hazard ratios for Group I-III cancers and paternal exposure to specific pesticides were calculated using exposure information collected on 50 pesticides during phase 1 and 2 of the Agricultural Health Study. The exposure information allowed for calculation of intensity-weighted days of exposure to pesticides using the Agricultural Health Study exposure algorithm. Additionally, maternal ever exposure to specific pesticides was used to evaluate risk of childhood cancer. There were 118 cancers identified in children of Agricultural Health Study participants. The all-cancer standardized incidence ratio was significantly elevated (SIR = 1.27 95% CI: 1.04-1.50). The most common groups of cancers were Group I leukemia, myeloproliferative disease, and myelodysplastic disease (n=34) followed by Group III central nervous system (CNS) and miscellaneous intracranial and intraspinal neoplasms (n=25). For paternal intensity-weighted days of exposure, there were 31 of 50 specific pesticides that had sufficient cases of cancer to investigate using Cox proportional hazard models. The herbicide trifluralin significantly increased the risk for Group I childhood cancers for any parental pesticide exposure 2 years before birth through birth when compared to children with no paternal exposure (HR = 2.72 95% CI: 1.15, 6.44). This was consistent with results found from analyzing exposure split into two quantiles based on median exposure of exposed children with a Group I cancer. Parental use of the herbicide S-Ethyl-dipropylthiocarbamate (EPTC) did not result in a sufficient number of Group III cancer cases to look at levels of exposure to EPTC, but ever exposure showed an increased hazard ratio when compared to children with unexposed fathers (HR = 2.56 95% CI: 1.06, 6.20). Other pesticides (dicamba, cyanazine, and terbufos) showed mixed evidence of an association with specific childhood cancers, but were either under powered to evaluate with sensitivity analysis or showed inconsistent risk across exposure levels. Less extensive exposure information was available for mothers of children of the Agricultural Health Study, so analysis was restricted to ever or never exposure to pesticides during a mother’s lifetime. Additionally, there were a limited number of cases of cancer for which maternal exposure to specific pesticides was reported resulting in only 4 pesticides being evaluated for childhood cancer risk (glyphosate, 2,4-dichlorophenoxyacetic acid (2,4-D), carbaryl, and malathion). For these four pesticides, this study did not detect any increased risk of childhood cancer from maternal exposure. In summary, this study provides the first epidemiological evidence of an increased risk of childhood cancer for trifluralin and EPTC. Since this study provides the first evidence of this increased risk, additional analysis is needed to validate the results. This study demonstrates how pesticide exposure information from participants of the AHS can be used in the evaluation of their children’s cancer risk. Additional follow-up and analysis of this cohort beyond the age of 17 would provide further insight into cancer risk during early adulthood from early life pesticide exposure.

Bakgrund: Varje år drabbas globalt ungefär 400 000 barn och ungdomar i åldrarna 0–19 år av en cancersjukdom Situationen är livsomvälvande för alla inblandade, inte minst för barnets föräldrar. Tidigare forskning inom ämnet beskriver barnets cancersjukdom som en mycket hotfull situation för föräldrarna och att känslorna de ställs inför är mycket prövande och svårhanterliga. Syftet var att beskriva föräldrars upplevelser av att ha ett barn med cancersjukdom.  Metod: En deskriptiv kvalitativ litteraturstudie användes som metod. Studien baserades på 16 vetenskapliga originalartiklar.  Resultat: I resultatet framkom att föräldrarnas upplevelser är mångfacetterade och samtliga föräldrar beskrev att de tvingades möta många svårhanterliga känslor. Föräldrarnas upplevelser sammanfattades i sju huvudteman med tillhörande 17 kategorier. Dessa teman är: “att befinna sig i en känslostorm”, “familj och föräldraskap”, “vardagspusslet”, “tankar om livet och döden”, “att bemästra ett nytt liv”, “krock mellan föräldern och samhället” och “att befinna sig i en vårdkontext”.  Slutsats: Föräldrars upplevelse av att ha ett barn med cancersjukdom är mångfacetterad. Deras upplevelser beskrivs på ett emotionellt, psykiskt, fysiskt, finansiellt och socialt sätt. Genom ökad kunskap om föräldrars upplevelser och erfarenheter kan resultatet tänkas bidra till förbättrad vård för barncancerdrabbade familjer. / Background: Globally approximately 400 000 children and adolescents aged 0–19 is diagnosed with cancer each year. The situation is life-changing for everyone involved, not least for the child´s parents. Previous research on the subject describes that the child´s cancer diagnosis is a very threatening situation for the parents and the emotions they are faced with are very testing and difficult to handle. The aim of the study was to describe parents’ experiences of having a child with cancer. Method: A descriptive qualitative literature study was used as a method. The study was based upon 16 original scientific articles. The results showed that the parents' experiences are multifaceted. All parents described that they were forced to face many difficult-to-manage emotions.  Results: The results were summarized in seven main themes including 17 categories to describe parents’ experiences of having a child with cancer. These themes are: “being in an emotional storm”, “family and parenting”, “the everyday puzzle”, “thoughts about life and death”, “mastering a new life”, “clash between the parent and society” and “being in a care context”.  Conclusion: Parents' experience of having a child with cancer is multifaceted. Their experiences are described in an emotional, psychological, physical, financial and social way. Through increased knowledge about parents’ experiences may the result contribute to improved care for families affected by childhood cancer.

In this research report, I utilize interpretative phenomenological analysis (Smith, Flowers, & Larkin, 2009) to examine the mathematics education experiences of a child with cancer. Two qualitative interviews with a 13-year-old male patient with Hodgkin’s Lymphoma and his mother were analyzed. Findings revealed several storylines or themes: living with cancer, environmental barriers, and mathematics in virtual school. Grade level mathematics, content knowledge, and delivery during treatment in comparison to the child’s healthy peers are also discussed.

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Objective: The impact of childhood cancer on future quality of life (QoL) in survivors is unclear. Current studies focus on comparing outcomes to healthy peers and identifying related treatment and demographic variables, but a shift in our approach is necessary. This study is guided by the Wilson and Cleary Model (WMC) and seeks to identify longitudinal predictors of QoL in adolescent survivors of cancer that explain variance in QoL beyond the impact of treatment and demographic variables. Methods: The Childhood Cancer Survivor Study (CCSS) is a multi-institutional longitudinal study following a cohort of childhood cancer survivors. This study focuses on the CCSS cohort (N = 305) who completed the baseline survey in 1994 and the Teen survey in 2001. The baseline survey assessed parent-report of child’s psychological and physical symptoms, functional status, and health perceptions. The Teen survey utilized the Child Health and Illness Profile – Adolescent Edition (CHIP-AE), a self-report measure assessing QoL in six domains: achievement, resilience, satisfaction, discomfort, disorders, and risk. The primary hypothesis was that psychological and physical symptoms, functional status impairment, and health perceptions as rated by parents at baseline would predict variance in quality of life as rated by adolescents at follow-up after adjusting for demographic and treatment-related variables. Six separate hierarchical regressions were analyzed for each of the QoL domains. Results: The main hypothesis was supported. For each QoL outcome, a significant amount of variance was predicted: achievement, F (6, 259) = 8.90, p < .001, adjusted R2 = .152, resilience, F (12, 209) = 3.47, p < .001, adjusted R2 = .118, satisfaction, F (6, 265) = 8.73, p < .001, adjusted R2 = .146, discomfort, F (7, 273) = 6.75, p < .001, adjusted R2 = .126, disorders, F (9, 212) = 6.47, p < .0001, adjusted R2 = .182, and risk, F (7, 238) = 4.81, p < .001, adjusted R2 = .098. Furthermore, for all outcomes, psychological and physical symptoms, functional status impairment, and health perceptions predicted variance above and beyond the impact of demographic and treatment variables. These factors accounted for an additional 9.5% of the variance in the achievement domain, 6.2% for resilience, 10.8% for satisfaction, 6.5% for discomfort, 12.4% for disorders, and 6.1% for risk. Conclusions: Results suggest that psychological and physical symptoms, functional status and health perceptions should be assessed and targeted in interventions for childhood cancer survivors to promote future positive QoL. Future studies need to continue identifying factors related to positive long-term functioning in diverse samples of childhood cancer survivors.

Bakgrund: Ett barn dagligen drabbas av cancersjukdom i Sverige. Föräldrarna har en viktig del i vården som följer. Cancern leder till stora livsförändringar hos familjen och framkallar många olika känslor. Vården ska anpassas efter hela familjens behov och familjen ska göras delaktiga i vården. Syfte: Syftet var att undersöka föräldrars upplevelse att ha ett barn som lider av cancer, samt hur de upplever att sjuksköterskan kan underlätta deras nya livssituation. Metod: En litteraturöversikt där 11 vetenskapliga artiklar ligger till grund. Resultat: Alla reagerade olika och det fanns många olika känslor som föräldrarna upplevde. Många föräldrar upplevde ett förändrat föräldraskap, då de kände sig osäkra på sin föräldraroll. Ett cancerbesked gjorde det svårt att planera framtiden och vardagen förändrades, då fokus låg på det sjuka barnets vård. Cancer gjorde att föräldrarna fick nya perspektiv och inte längre tog livet för givet. Information var något föräldrarna upplevde som viktigt. De ville ha all information och att den förmedlades på ett bra sätt och med känsla. Sjuksköterskan är ofta nära föräldrarna därmed utgör de ett stort stöd. Föräldrarna upplevde att sjuksköterskan hade ett stort ansvar att prata med och stötta dem i deras välmående under barnets sjukdom. Slutsats: Många känslor är inblandade när ens barn lider av cancer, det är svårt att förutse hur föräldrarna kommer reagera eftersom alla har unika upplevelser. Sjuksköterskan kan underlätta situationen genom god kommunikation och adekvat information. Det är viktigt att sjuksköterskan skapar ett band till familjen, för att stötta dem genom en svår tid. / Background: In Sweden one child is daily diagnosed with cancer. Parents have an important role in the care. A cancer diagnose is life changing for everybody and induces a lot of different feelings. The health care should be adapted to the whole family ́s need and the family should be involved in the health care. Aim: The aim of this study was to examine parents experience to have a child diagnosed with cancer and how they believe the nurse can facilitate in their new life situation. Method: A review based on 11 scientific articles. Result: All parents responded different and expressed different feelings. Many parents experienced a changed parenthood. The cancer diagnose made it difficult to plan for the future. Their everyday life changed, since focus was on the ill child. The diagnose gave new perspectives and they no longer took life for granted. The parents believed that information was important. They wanted as much information as possible and that the nurse delivered it in a good way. The nurse is often the one the parents connects to, which makes them a big support. The parents believed that the nurse had a responsibility to talk to and support the parent’s witch contributed to their wellbeing.Conclusion: A lot of feelings are involved when the child is diagnosed with cancer, it is hard to predict how the parents will react because everybody are unique. The nurse can support parents in the situation through good communication and adequate information. It is important that the nurse have a close interaction with the family, in order to support them.

<p>The aim with this thesis was to assess the impact of prenatal ultrasound exposure on psychotic illness, childhood brain tumors (CBT) and school achievement, and to evaluate prenatal X-ray exposure and the risk of CBT.</p><p>In a cohort study, children born in Malmö 1973-1978, where prenatal ultrasound was used routinely, were considered exposed (n=13, 212) and children born at hospitals with no use of ultrasound, were considered unexposed (n=357,733). Exposed men had a tendency toward a higher risk of schizophrenia. For other psychoses there were no differences between groups. Other factors related to place of birth might have influenced the results. </p><p>In a case control study, children born 1975-1984 with a diagnosis of CBT (n=512), and randomly selected control children (n=524) were included. Exposure data on X-ray and ultrasound from antenatal records was completed with information from the Medical Birth Register. We found no overall increased risk for CBT after prenatal X-ray exposure. When stratifying by histological subgroups, primitive neuroectodermal tumors had the highest risk estimates. For ultrasound exposure, no increased risk for CBT was seen and numbers of examinations or gestational age at exposure had no substantial impact on the results. </p><p>In a follow-up of a randomized trial on prenatal ultrasound scanning 1985-87, we assessed the children’s school grades when graduating from primary school (15-16 years of age). We performed analyses according to randomization, ultrasound exposure in the second trimester and exposure at any time during pregnancy. There were no differences in school performance for boys or girls according to randomization or exposure in the second trimester. Boys exposed to ultrasound any time during fetal life had a reduced mean score in physical education and small, non-significant increased risk of poor school performance in general.</p>

Background: Despite advances in cancer prognosis and increased survival rates for childhood cancer, having a child diagnosed with cancer can be considered one of the most stressful life events in a parent’s life. The adverse psychological impact of childhood cancer on parents has been found to be higher than in any other childhood chronic illness. Parents can find it difficult to adjust and use effective coping strategies to deal with the illness-related demands. Dispositional optimism (i.e. positive outcome expectancies for the future) has become a key theoretical component in positive and health psychological research, aiming to explain adjustment and coping in distressing life situations. However, optimism in the context of caregiving for a child with chronic illness and especially cancer has received little research attention, but may be important as optimistic people tend to show greater psychological adjustment and effective coping. Aims: To identify the characteristics of optimistic parents of children with cancer. To examine the relationship between optimism, anxiety, depression, life satisfaction, coping and subjective health perception in parents of children with cancer and parents of healthy children. Also, to provide a more in-depth understanding of the needs and experiences of parents in relation to their level of optimism/pessimism. Methods: A mixed methodological approach (quantitative and qualitative methods) was adopted to study optimism as well as the impact and the experiences of parents caring for their child with cancer. The mixed method design comprised two phases of data collection and analysis. In Phase I, quantitative methods were used. 100 parents of children with cancer were recruited during attendance at Oncology Out-patients Clinics at a UK regional Cancer Centre. A comparison group of 117 parents of healthy children were also recruited. All parents completed a questionnaire, providing demographic and medical information relating to their child, dispositional optimism, psychological distress, life satisfaction, coping and subjective health perception. Descriptive statistics, unrelated t-tests and x2 tests were used where appropriate to examine differences on optimism, psychological distress, life satisfaction and coping variables between the SG and CG. Bivariate Pearson correlations were used to identify any possible differences between the two groups. In Phase II, qualitative data were collected and analysed using Interpretative Phenomenological Analysis (IPA). 10 semi-structured interviews were conducted with 5 high optimistic and 5 high pessimistic parents of children with cancer given their optimism score in the quantitative study. Results: In the Phase I of the study, findings showed that the parents of children with cancer had higher levels of anxiety, depression, lower levels of optimism, satisfaction with life and subjective health perception than the comparison group. Optimism was significantly correlated with satisfaction with life, subjective health perception, anxiety and depression in both groups. The interviews in Phase II of the study explained better the role of optimism and pessimism in parental experience of adjusting to and coping with childhood cancer. Interviewees described the way that their child’s diagnosis of cancer had affected their lives and their journey from shock to acceptance and adjustment for the optimistic parents or despair and feelings of helplessness and inability to cope for the pessimistic parents. Regardless of level optimism/pessimism, interviews underlined the importance and parents’ need for social support, ongoing communication with health professionals and contact with other parents of children with cancer. Conclusion: The findings highlight the importance of optimism and pessimism in relationship to psychological distress in parents of children with cancer. Interventions targeting parents’ optimism are recommended as a potential source of coping with adversity within this population.