Objective: Pediatric cancer caregivers will encounter circumstances that will challenge their personal resources to face the diverse demands of care. Therefore, the objective of the study was to determine the relationship between burden syndrome and coping strategies in caregivers of pediatric cancer patients. Method: 93 main caregivers of pediatric cancer patients participated (69.9% women, 30.1% men, mean age = 37.20 years, SD = 11.32), selected in a non-probabilistic way. The Caregiver Burden Scale and the COPE-28 Questionnaire were applied. Correlational and comparative statistics were used for data analysis. Results: The results indicate the presence of significant and inverse correlations that vary between r =-.25 and r =-.56. However, no significant association was found between the dimensions of caregiver burden and substance use. On the other hand, those caregivers who use poorly adaptive strategies are more likely to generate overload in relation to their role, influencing their personal, family and social life. Conclusion: There is a significant relationship between overload syndrome and coping strategies. In addition, significant differences in overload are identified according to the place of origin and the hours dedicated to care.

Bakgrund: Internationellt diagnostiseras varje år 300 000 barn i åldrarna 0-19 år med cancer. När ett barn diagnostiseras med cancer påverkas hela familjen, inklusive det friska syskonet. Det är inte ovanligt att dessa hamnar i skymundan då större delen av fokuset riktas åt den sjuke. Som sjuksköterska är det därför angeläget att veta mer om det friska syskonets perspektiv vid barncancer. Ökad kunskap möjliggör utrymme till att inkludera det friska syskonet i vårdprocessen, samt för att kunna ge den stöttning och information som önskas. Syfte: Syftet var att beskriva hur ett barn upplever att det är att leva i en familj där ett syskon har fått en cancerdiagnos. Metod: Litteraturöversikt där 17 vetenskapliga artiklar, både kvalitativa och kvantitativa, inkluderades efter att ha sökts fram via databaserna PubMed och CINAHL. Artiklarna var skrivna på engelska och publicerade mellan åren 2010-2020. Dataanalysen gjordes med hjälp av Kristenssons (2014) integrerade analys. Resultat: Resultatet visade att syskon som hade en bror eller syster med cancer upplevde stora förändringar i livstillvaron både emotionellt, psykiskt och socialt. Detta inkluderade både positiva samt negativa förändringar. Faktorer som syskon upplevde var till hjälp för deras välbefinnande var att känna delaktighet, att få kontakt med andra som var eller varit med om en liknande situation, få anpassad information samt uppmärksamma positiva händelser för att hitta möjligheter till att ha roligt. Slutsats: Att vara syskon till en bror eller syster med cancer medför förändringar och väcker många blandade känslor. Den nya tillvaron påverkar på olika sätt familjesituationen, skolan samt andra relationer. Vårdpersonal, föräldrar och andra yrkesverksamma som möter och arbetar med dessa syskon kan stötta dem genom att via uppmärksamhet och frågor visa intresse för det friska syskonets välmående och inte enbart ha fokus på den sjuke. / Background: Internationally every year 300 000 children 0-19 years get diagnosed with cancer. When a child is diagnosed, the whole family, including the healthy sibling, is affected. It is not uncommon for these siblings to end up in the shadows as most of the focus is on the diagnosed child. As a nurse it is therefore important to know more about the sibling´s perspective during childhood cancer. Increased knowledge enables space to include the healthy sibling in the care process, as well as to be able to provide the support and information that is desired. Aim: The aim was to describe child’s experiences of having a sibling with cancer. Method: Literature review where 17 scientific articles, both qualitative and quantitative, were included after being searched in the databases PubMed and CINAHL. The articles were written in English and published between the years 2010-2020. The data analysis was conducted with Kristensson's (2014) integrated analysis. Results: The results showed that siblings who had a brother or sister with cancer experienced major changes in life both emotionally, mentally and socially. This included both positive and negative changes. Factors that siblings experienced were helpful for their well-being were to feel involved, to get in touch with others who were or had been in a similar situation, to receive adapted information and to pay attention to positive events and find opportunities to have fun. Conclusions: Being a sibling of a brother or sister with cancer brings changes and evokes many mixed feelings. The new life affects the family situation, the school and other relationships in different ways. Healthcare professionals, parents and other professionals who meet and work with these siblings can support them by showing interest in the healthy sibling's wellbeing through attention and questions and not just focusing on the diagnosed child.

Advancements made in the treatment of the physiological aspects of childhood cancer have resulted in a greater need to conceptualize the disease psychologically as a chronic illness that causes significant stress and requires ongoing adjustment. This study investigates the relationships among parental characteristics, child characteristics, and the quality of life of children diagnosed with cancer. Forty-seven mothers and sixteen fathers, as well as nineteen children diagnosed with cancer, completed measures of their own psychological functioning. Measures of the diagnosed children's quality of life also were completed. Mothers' ratings of their children's quality of life were found to be correlated positively with both fathers' and children's ratings. In addition, a significant relationship was found between mothers' depression and parenting stress and children's quality of life, as well as mothers' and fathers' anxiety and children's quality of life. Finally, mothers', fathers', and children's ratings of their own characteristics predicted significantly their ratings of children's quality of life. Overall, these results suggested the importance of examining the psychological characteristics of family members when assessing the quality of life of children with cancer.

Thesis (M.A.)--Boston University / PLEASE NOTE: Boston University Libraries did not receive an Authorization To Manage form for this thesis or dissertation. It is therefore not openly accessible, though it may be available by request. If you are the author or principal advisor of this work and would like to request open access for it, please contact us at open-help@bu.edu. Thank you. / Current research has shown pediatric cancer patients to be at greater risk for lowered selfesteem, altered body image, and an overall change in self-concept. Even if patients are only at an increased risk, the development of a tool to identify these problems is necessary. Periodic screening of all patients would be beneficial and when problems are identified, intervention can take place. Research previously conducted with various tools concluded that cancer patients may select answers that allow them to appear "normal" or "supernormal" and therefore defensively deny their cancer (Puuko 1997). Currently there is not a unifonn instrument used to test these factors. To this end, a protocol was devised to evaluate the use of Harter's Self-Perception Manual in the pediatric cancer population and to test the current theories. Dr. Susan Harter's Self-perception Questionnaires have previously been used for prospective research in various pediatric populations and are designed specifically to allow patients to answer truthfully. The questionnaires have been determined to be a valid, reliable instrument to measure a child's self-perception of their self-concept. Further data (to come from the prospective study) is needed to determine if the scale is useful for pediatric cancer patients. In addition, the retrospective use of Harter's scale will be piloted in this protocol in order to determine how children really felt during trea1ment. In an effort to compensate for developmental advances/processes and issues with accurate recall specific limits have been placed on retrospective participants. / 2999-01-01

Social acceptance and peer and romantic relationship self-efficacy were examined as salient factors related to social development among emerging adult (ages 18 to 25) survivors of pediatric cancers. Using a cross-sectional, within-groups methodology, relationships between cancer treatment intensity and peer and romantic relationship self-efficacy and social acceptance were assessed. Perceived health vulnerability, situational coping style, parent and peer attachment, and perceived physical attractiveness were explored as moderators of peer and romantic relationship self-efficacy and social acceptance. Additionally, social acceptance was examined within a cancer stereotyping framework. Fifty-two emerging adult survivors of pediatric cancers (54% male; mean (M) age = 21.38 years, standard deviation (SD) age = 3.11 years) completed self-report questionnaires. Participants were diagnosed between ages 5 and 19 (Mage = 12.59 years, SDage = 4.57 years) and were at least six months post-active treatment (Mtime = 7.32 years, SDtime = 4.46 years). Simultaneous regression analyses indicated that health vulnerability, coping style, parent and peer attachment, and physical attractiveness together accounted for a significant amount of variance in peer and romantic relationship self-efficacy and self-perceived social acceptance. There were significant main effects of perceptions of physical attractiveness and peer attachment on peer relationship self-efficacy and self-perceived social acceptance. There was also a main effect of perceived physical attractiveness on romantic relationship self-efficacy. However, treatment intensity was not significantly related to peer or romantic relationship self-efficacy or social acceptance. Furthermore, there were no significant moderating effects of health vulnerability, coping, parent or peer attachment, or physical attractiveness on the relationship between treatment intensity and peer or romantic relationship self-efficacy or social acceptance. In terms of social acceptance, participants believed that others’ viewed them as more socially accepted than they viewed themselves. Participants also rated a hypothetical peer with cancer as less socially accepted than healthy peers. Results suggest greater perceived physical attractiveness and stronger attachment to peers may be strongly related to greater relationship confidence and feelings of being socially accepted. Survivors may also hold stereotyped views of their own level of social acceptance and the social acceptability of peers diagnosed with cancer. Future research and interventions implications are considered.

Prior research has shown that pediatric cancer survivors face a multitude of longterm effects from treatment of their disease. Many of these conditions can be treated or managed through proper nutrition, however patients of the DanceBlue Kentucky Children's Hospital Hematology/Oncology Clinic do not see a registered dietitian. This study looked at food and drink consumption of the past 30 days by the patient using the NHANES Dietary Screener Questionnaire to see if they met nutrition recommendations as outlined by the 2015‐2020 Dietary Guidelines for Americans. Results from the study found that off‐treatment pediatric cancer survivors (n=21) failed to meet dietary recommendations in fruit and vegetable, whole grain, and dairy intake. It was also shown that participants exceeded their limit of added sugars. From these findings it was concluded that pediatric cancer survivors in the DanceBlue Kentucky Children’s Hospital Hematology/Oncology Clinic would benefit from nutrition counseling and education provided by a Registered Dietitian.

<p>Caregivers of survivors of pediatric cancer face ongoing social, emotional and financial challenges that may result in enduring illness- and caregiving-related distress. After patients complete treatment there are challenges that persist. Indeed, emerging physical and cognitive "late effects," resulting from the disease and treatment, require families to adapt to a new normal state that may require significant long-term follow-up and care by the survivor and their primary caregiver. This study compares the psychological adjustment of caregivers of pediatric cancer survivors with caregivers of healthy children. In addition, this study evaluates individual factors, such as family functioning and coping style, which may be associated with poorer adjustment among caregivers of pediatric cancer survivors. Caregivers of pediatric cancer survivors (n = 64) and caregivers of healthy children (n = 64) were recruited during regularly scheduled clinic visits to complete questionnaires including a demographic and illness questionnaire and measures of psychosocial functioning. A series of multivariate analyses of covariance were conducted to assess for differences in caregiver distress by group. Caregivers of survivors reported significantly more child-specific parenting stress and somatization than caregivers of healthy children. Hierarchical regression modeling revealed that Escape-avoidance coping and Supportive family functioning predicted 25-40% of the variance in parenting-related psychological adjustment among caregivers of survivors. Caregivers of pediatric cancer survivors face unique challenges that contribute to ongoing distress, particularly related to the parenting role. This population may benefit from interventions aimed at reducing avoidance based coping and improving family functioning.</p> / Dissertation

Blood and marrow transplantation (BMT) has become an increasingly acceptable treatment for children with life threatening malignant diseases. Survival rates for transplant recipients vary from 23% to 63%. Children with complications from BMT, typically die in the hospital after a prolonged stay. The parental decision to allow a child to die a natural death is typically made in an aura of emotional duress and bewilderment at the complexity and volume of new information that must be assimilated.The purpose of this study was to describe the process of parental decision making for Do Not Resuscitate (DNR) or to withdraw life support in pediatric BMT.The framework for this study was developed from the author's epistemology that blends neo-modernism (recognition of individual uniqueness yet acknowledgment that certain underlying universal principals exist) with the idea that the nature of all things may be viewed as an ongoing, self-constructing process.Grounded theory methodology was used. The sample (determined through theoretical sampling) consisted of seven parents of children who died following BMT and for whom the parent made an end-of-life decision. Data was analyzed using constant comparative analysis, a method that combines both substantive and theoretical coding of data with a qualitative style of theory development.The realization of parental knowing was the process that parents used to navigate the human problem of having to make the end-of-life decision for their children who were dying following blood and marrow transplantation. This process consisted of four categories: Developing Trust, Committed to Seeing It Through, Facing My Worst Fear, and Acceptance of Self.The knowledge gained from this study will inform nurses who care for children who are dying following pediatric BMT. Strategies may be developed that will assist nurses to support the development of parental trust, to help sustain the commitment of parents as they move through the BMT treatment journey, and to assist parents as they face their worst fear. As a result, parents should be better able to achieve an acceptance for themselves that will facilitate a more satisfying experience of the ever changing process occurring in their own lives.

Ewing Sarcoma (ES) is an aggressive pediatric solid tumor. Even though overall-survival for localized patients is approximately 70%, the overall-survival for high risk ES patients has not improved in the last 20 years. Therefore, there is a need for exploration of new therapeutic agents in ES. Recent evidence has demonstrated that ES cells behave like BRCA-deficient tumor types which renders them sensitive to PARP inhibitors in vitro and in vivo. However, a phase II study of the efficacy of single-agent PARP inhibition in patients with relapsed ES did not significantly improve outcome. As single-agent therapy is rarely expected to result in significant clinical responses, in this study, we plan to validate potential targeted combination therapies with PARP inhibitors in ES. Since ES appears to demonstrated BRCA-deficient biology with impaired homologous recombination, cells are expected to be sensitive to both PARP inhibitors and ATR inhibitors, drugs which have a role in regulating DNA damage and impairing homologous recombination. In breast cancer and ovarian cell lines with genetic BRCA-deficiency, PARP and ATR inhibitors have synergistic activity. We hypothesize that these inhibitors will also have synergistic anti-Ewing activity. Furthermore, we recognize that ES cells demonstrate remarkably quiet genomes suggesting that there is minimal ongoing DNA-damage when cells are growing unperturbed. Therefore, we also plan to test the effect of adding low-dose genotoxic chemotherapy to induce additional sensitivity to the combination of PARP and ATR inhibitors in ES. The specific aims of this study were to explore the possible anti-tumor effect of PARP inhibitors combined with ATR inhibitors in ES cell lines, and to explore whether low dose genotoxic chemotherapy with SN38 can potentiate the anti-tumor effect of combined PARP and ATR inhibition in ES cell lines. We studied the anti-Ewing Sarcoma effect of the combination of a PARP inhibitor, AZD2281, and an ATR inhibitor, AZD6738, across a range of doses with and without low doses of a DNA damaging agent, SN38 (irinotecan metabolite), in two ES cell lines. We analyzed synergy by determining the Combination Index (CI) and Fractional Inhibition (FA) of each combination. We found that the ATR inhibitor, AZD6738, was synergistic across large range of concentrations when combined with the PARP inhibitor, AZD2281, in ES cell lines. We also found that treatment of cells with low doses of SN38 increases ES cell sensitivity to treatment with the PARP inhibitor and ATR inhibitor combination. This study provides preclinical support for additional studies exploring these combinations in ES. Given the low number of pediatric patients with ES compared to adult cancer patients, there will be limited attempts in combining these agents in clinical trials. Therefore, the development of an in vivo trial testing the safety and efficacy of this combination in ES mouse models is proposed. / 2020-07-03T00:00:00Z

Measurement of circulating protein biomarkers associated with disease can facilitate early detection, help guide treatment strategies and improve patient outcomes beyond current standards of care. The combination of inexpensive 3D-printed flow cells and electrochemical biosensors has recently emerged as a viable platform for low-cost, reliable biomarker measurements. Here, we report an electrochemical immunoassay system based on simple graphite electrode arrays, 3D-printed flow cells, and signal-generating magnetic bead bioconjugates for simultaneous detection of three biomarker proteins (cancer antigen 125 (CA-125), midkine (MK) and osteopontin (OPN)) associated with pediatric soft tissue sarcomas (PSTS). Magnetic bead bioconjugates are functionalized with large amounts of antibody and enzyme labels, electrode arrays are modified with gold nanoparticles and antibodies for specific capture of bioconjugate-labeled biomarkers, and 3D-printed flow cells facilitate their amperometric detection. Using this system, detection limits for CA-125, OPN and MK are 100 times lower than those obtained with commercial enzyme-linked immunosorbent assay (ELISA).