Integrated Psychological Services in Pediatric Oncology: Caregiver Perspectives at Diagnosis.

BACKGROUND/OBJECTIVES: Pediatric oncology patients and families are at risk for increased distress at diagnosis. The New Oncology Program in Psychology (NOPP) aligns psychological care with the established standards of care at diagnosis. This project aimed to evaluate NOPP and understand the differences between caregivers' perceptions of feeling informed and prepared to navigate psychosocial concerns for those who did and did not receive psychological services at diagnosis. METHODS: A survey was administered via a virtual platform. Frequency analyses summarize caregiver experiences and concerns. Mann-Whitney U tests assess the differences in caregiver knowledge and preparedness between caregivers who did and did not receive psychological services. RESULTS: Caregivers reported difficult emotions at diagnosis and expressed concern for the impact of diagnosis and treatment across broad domains of patient functioning. Caregivers of patients who received psychology consultation felt more informed about difficult emotions and how these may change over time. They felt more prepared and equipped with strategies to manage difficult emotions. Caregivers of patients who completed a cognitive assessment also felt more informed and prepared regarding the potential effects of the diagnosis and treatment on patient cognitive/academic functioning. CONCLUSIONS: Psychological services were associated with caregivers' positive perceptions surrounding the management of difficult emotions and with their knowledge regarding the cognitive/academic impact. The results inform the ongoing modification of NOPP.

A Comparison of Commonly Utilized Diagnostic Biopsy Techniques for Pediatric Patients With Cancer: A Systematic Review by the APSA Cancer Committee.

BACKGROUND: Historically, surgical biopsy (SB) for diagnosis of pediatric solid tumors was considered necessary to provide adequate tissue for histologic and molecular analysis. Less invasive biopsy techniques such as image-guided core needle biopsy (CNB), have shown comparable accuracy with decreased morbidity in some adult studies. However, data regarding the safety and efficacy of CNB in pediatric tumors is limited. This study's aim was to assess the overall rate of successful diagnosis and safety of CNB compared to SB in children with malignancies. METHODS: A PRISMA compliant systematic review was performed in MEDLINE via PubMed, Embase and CINAHL Plus database searches from 2010 to 2023. Studies were included with relevance to the following clinical question: For children with concern for malignancy requiring biopsy for diagnosis, how does CNB compare to open or laparoscopic/thoracoscopic SB in terms of safety and diagnostic efficacy? Data for patients ≤21 years requiring biopsy for diagnosis of liver tumors, neuroblastoma (NB), soft tissue sarcoma (STS), and lymphoma were included. RESULTS: Twenty-seven studies including 2477 patients met inclusion criteria, with 2065 undergoing CNB and 412 SB. Of the 2477 patients, 820 patients had NB, 307 liver tumors, 96 STS, 151 lymphoma, and 1103 patients were from studies that included multiple diagnoses. The average complication rate for CNB was 2.9% compared to 21.4% for SB (p < 0.001). Bleeding was the most common complication in both groups, but significantly higher after SB (22.1% vs 2.3%) (p < 0.001). CNB was diagnostic in 90.8% of patients compared to 98.8% who underwent SB (p < 0.001). CONCLUSIONS: Rates of successful diagnosis were greater than 90% for both CNB and SB, though significantly higher for SB. Conversely, complication rates were close to ten times higher after SB compared to CNB. Given its relatively lower risk profile, CNB can be a safe and useful diagnostic tool for children with solid malignancies. Research focused on enhancing CNB's diagnostic accuracy while maintaining low morbidity should be further explored. LEVEL OF EVIDENCE: Treatment study, Level III.

Translation and validation of the caregiving burden scale for family caregivers of children with cancer in chinese population.

BACKGROUND: Effective response and reducing the burden of family care for children with cancer is critical, and China currently lacks a specific assessment tool. AIMS: This study aimed to translate and validate the Caregiving Burden Scale for Family Caregivers of Children with Cancer (CBSFC-CC) and then test and implement the tool. METHODS: According to the Beaton cross-cultural debugging guide, preliminary Chinese version of CBSFC-CC scale was formed, which was suitable for Chinese language environment and clinical context. Exploratory factor analyses (EFA) and confirmatory factor analyses (CFA) were performed to verify structural validity. Convergent validity, discriminant validity and reliability were also conducted. RESULTS: A total of 529 family caregivers of children with cancer participated in the survey. EFA extracts and combines four factors and explained 65.80% of the total variation. CFA proved that all the goodness-of-fit indicators were acceptable. The Cronbach's alpha of the Chinese version of CBSFC-CC was .96, and the test-retest reliability coefficient was .95. Four dimensions and 29 items were identified in the final Chinese version of CBSFC-CC. CONCLUSION: The chinese version CBSFC-CC is scientifically reasonable and has good reliability and validity, which can be applied to the investigation of the nursing burden of family caregivers of children with cancer in China.

Living With Cancer: Child-Parent Dyads' Perspectives and Experiences From a Private Tertiary Care Hospital in Pakistan.

The life experiences of children with cancer and their parents as individuals have been well documented in literature. However, little is known about their experiences as child-parent dyads in Pakistan regarding these children's quality of life. Thus, the study was conducted in the context of the family-centric society of Pakistan. In-depth interviews were conducted with 28 participants (14 child-parent dyads), comprising 9 female and 5 male children receiving cancer treatment and 8 mothers and 6 fathers (primary caregivers). All the participants were Muslims and hailed from diverse ethnic backgrounds, and most belonged to middle socioeconomic backgrounds. Thematic analysis was performed using Braun and Clarke's (2006) framework, which revealed four themes: (1) Stress, Fears, and Optimism; (2) Reactions to Restrictions; (3) Adaptation and Coping; and (4) Support Structure and Mechanisms. The findings indicated that children's and parents' daily lives were affected in various ways during the children's cancer journey. They faced several challenges which impacted their well-being. Particularly, the children considered their symptoms as restrictions in the way of carrying out their routine lives. However, children and parents also elaborated on using different coping strategies, such as play, reminiscing the past, incorporating religious practices into their daily routines, and keeping a family-centred approach towards the child's care. The parents also recommended that cancer-specialised services and support groups should be accessible. Conclusively, these findings are useful for healthcare providers in giving family-centred care to afflicted families and devising innovative interventions that address the needs of children with cancer and improve their quality of life.

Health-related quality of life and its determinant factors in Thai children with cancer: parents vs. children perspectives.

BACKGROUND: Health-related quality of life (HRQOL) is a vital assessment to demonstrate the achievement in pediatric cancer care parallels that of medical treatment. The Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Module in the Thai Version has become a standard tool to access the HRQOL among Thai children with cancer and their families. This study aimed to explore the HRQOL and factors related to HRQOL among pediatric oncology patients using the PedsQL 3.0 Cancer Module. METHODS: In 2018-2019, a single-institution, cross-sectional study was conducted among children with cancer and their families in Bangkok, Thailand. A paired-sample t-test was performed to evaluate the differences between the HRQOL scores of the child and parents' reports. Linear regression was used to evaluate factors associated with HRQOL and which particular domains of the PedsQL 3.0 Cancer Module were influenced. RESULTS: Eighty-five children with cancer and their families were enrolled. The patients' mean age was 10.82 ± 5.48 years. The most common cancer types included acute lymphoblastic leukemia (n = 32, 67%), central nervous system tumors (n = 13, 15%), osteosarcoma (n = 10, 27%) and neuroblastoma (n = 9, 24%), in rank. The mean HRQOL scores in child and parent reports were 74.37 ± 15.7 and 70.42 ± 17.15, respectively (p = 0.034). Factors negatively correlated to HRQOL in parent reports were the number of outpatient visits (p = 0.019) and hospital admissions (p = 0.002). The number of hospitalizations was the only independent factor that affected HRQOL (p = 0.044). The number of outpatient visits and/or hospital admissions was influenced by pain and hurt, nausea, procedural anxiety and communication domains (p < 0.05). Only the number of hospitalizations was an independent factor influencing the procedural anxiety domain in HRQOL (p = 0.005). CONCLUSION: HRQOL among Thai children with cancer was desirable from both children's and parent's perspectives. Differences between child and parent HRQOL scores were observed. The number of outpatient visits and hospital admissions affected HRQOL, particularly in the procedural anxiety aspect. TRIAL REGISTRATION: Thai Clinical Trials Registry (TCTR) Number: TCTR20200904001 (04/09/2020),  https://www.thaiclinicaltrials.org/ .

Storytelling to support legacy making for bereaved parents of children with cancer.

Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of storytelling in creating and sustaining legacy. Most participants (89%) told stories centered around the child's impact and parent's coping, including the child's character and interpersonal relationships during and after their lifetime as well as how the child's legacy influenced parents' grief experiences. Future research is needed to explore the potential impact of storytelling initiatives to support legacy-making for bereaved caregivers.

Exploring perceptions of inpatient hospital attire in children with cancer.

BACKGROUND: Attire bolsters identity, self-expression, and comfort. Hospital gowns are known to be distressing in adults. Attitudes of children with cancer toward hospital attire remain uninvestigated and may be a modifiable factor in overall well-being. METHODS: A 39-item mixed methods survey evaluated perceptions of patient attire in children with cancer. Children aged 7-18 years were recruited at an academic medical center. Data analysis included simple statistics and thematic analysis. RESULTS: Forty children with cancer receiving oncologic care participated. Participants' mean age was 12.4 (SD = 3.0, range = 7-17) years, and 25 (62%) were male. Quantitative data revealed 81% of participants preferred their own attire when admitted to the hospital, feeling more comfortable in such when well (91%) or sick (75%). They did not feel like they "must" wear a gown when admitted (60%) and did not want to be asked about preferred inpatient attire (63%). Thematic analysis revealed that children had strong negative views of gowns and preferred to wear their own attire in the hospital, which provided physical and emotional comfort. Children worried wearing their own clothing could impede their care. CONCLUSION: Children with cancer prefer wearing their own clothes in the hospital for physical and emotional comfort. They are willing to wear gowns for ease of care; however, they do not want to arbitrate when they need to make that choice. Providers may ease distress by considering a child's own clothes as default hospital attire with instructions for when a gown is necessary for good clinical care.

Cross-cultural adaptation, reliability, and validity of the Turkish Pediatric Quality of Life Inventory-Cognitive Functioning Scale (PedsQLTM-CFS) in children with cancer.

The Pediatric Quality of Life Inventory-Cognitive Functioning Scale (PedsQLTM-CFS) was developed as a brief, general, symptom-specific tool to measure cognitive function. The 6-item PedsQL™ Cognitive Functioning Scale and PedsQL 3.0 Cancer Module answered 369 parents and 330 children with 5-18 years. Parents also completed Behavior Rating Inventory of Executive Function (BRIEF). The PedsQL™ Cognitive Functioning Scale evidenced excellent reliability (parent proxy-report α = 0.980/Fleiss Kappa: 0.794; children self-report α = 0.963/Fleiss Kappa: 0.790). Both child self-report and parent proxy-report PedsQL™ Cognitive Functioning Scale scores exhibited significant correlations with all parent-report BRIEF summary and subscale scores (p < .05). Both child self-report and parent proxy-report PedsQL™ Cognitive Functioning Scale scores exhibited significant correlations with PedsQL 3.0 Cancer Module total score and subscale scores (p < .05). The PedsQLTM-CFS can be used in high-risk populations with substantial to perfect reliability, both in regards to total/subcategory scores as well as in children with cancer.

Financial burden faced by breastfeeding mothers caring for children diagnosed with cancer in Ghana; an exploratory qualitative study.

BACKGROUND: When children are diagnosed of cancer, parents face varied financial issues. Among some of the identifiable factors that cause financial challenges among breastfeeding mothers include the high cost of childhood cancer care. The high cost of childhood cancer care could impede the sustainability of access to prompt care. There is paucity of literature on the financial burdens faced by breastfeeding mothers with children diagnosed with cancer in Ghana. Therefore, this study sought to explore the financial burden faced by mothers with breastfeeding children diagnosed with cancer. METHODS: The study employed qualitative exploratory descriptive design. One-on-one interviews were conducted among 13 mothers with breastfeeding children diagnosed of cancer. Permission was sought for data to be recorded, transcribed concurrently and inductive content analysis done. RESULTS: Three main themes emerged after data analysis: High cost (sub-themes; expensive medications, laboratory investigation fees, and cost of mothers' feeding), Public support (sub-themes; appeal for funds, national health insurance scheme) and Self-financing (loans, personal savings). Most of the breastfeeding mothers narrated that high cost of childhood cancer care generated financial distress to them. They shared that the cost involved in purchasing their children's cancer medications, paying for laboratory investigations and feeding themselves to produce adequate breastmilk to feed their children were challenging. Some of the mothers self-financed the cost of their children's cancer care through loans and personal savings. CONCLUSION: Government and other stakeholders should allocate annual budget and funds towards childhood cancer care to lessen the financial burden breastfeeding mothers caring for children with cancer experience.

The effect of psychological resilience and spiritual well-being on the experience of hope in parents of children with cancer.

PURPOSE: Hope in pediatric oncology guides parents as an inner guidance compass through their child's challenging journey toward cancer treatment. This study was designed to examine the effects of psychological resilience, spiritual well-being, and some child- and parent-related factors on parents' experience of hope while their child is undergoing cancer treatment. DESIGN AND METHODS: This cross-sectional, correlational study was conducted between March and July 2022 in the pediatric oncology-hematology ward of a university hospital in Turkey. Parents of 120 children with cancer were included in the study. Data were collected using the child and parent questionnaire, Herth Hope Index, Connor-Davidson Resilience Short Form, and Spiritual Well-Being Scale. Correlation and multiple linear regression analysis were used to analyze the data. In addition, the content analysis method was used to analyze the open-ended structured questions. Ethical approval was obtained for the study. RESULTS: In the study, 57.5% of the parents who participated were mothers. The mean age of the children was 9.46 ± 5.00 years. 30.8% of the children were diagnosed with Acute Lymphoblastic Leukemia, and the mean duration of treatment was 20.42 ± 13.75 months. According to multiple linear regression analysis, child gender (ß = -0.16), number of children (ß = -0.16), cancer diagnosis (ß = -0.24), resilience (ß =0.31), and parental spiritual well-being (ß =0.40) were the determinant factors affecting parents' experiences of hope. All these predictors explained 55% of the change in parents' hope levels. In addition, two main themes (increasing and decreasing factors) were identified regarding parents' experiences of hope. CONCLUSIONS: Insights from this study have the potential to shape interventions specifically designed to maintain parents' hope throughout their child's cancer treatment journey. IMPLICATIONS FOR PRACTICE: This study may provide insights for the design of intervention programs in pediatric oncology hematology wards aimed at strengthening the hope and improving coping mechanisms of parents with children coping with cancer.

Association of Rumination and Metacognition with Posttraumatic Growth in Parents of Children with Cancer.

OBJECTIVE: The primary objective of this study was to examine the association of rumination, metacognition, and posttraumatic with growth in parents of children diagnosed with cancer. DATA SOURCES: The study adopted a descriptive correlational design, and participants (N = 103) were parents of children with cancer. The study was conducted online through the social media platforms of three cancer associations. Data were collected using the Metacognitions Questionnaire-30, the Event Related Rumination Inventory, and the Posttraumatic Growth Inventory. CONCLUSION: The findings revealed a positive correlation between deliberate rumination and metacognition with posttraumatic growth, while a negative correlation was observed between intrusive rumination and posttraumatic growth. Furthermore, deliberate rumination, intrusive rumination, and metacognition collectively accounted for 30% of the variance in posttraumatic growth among parents of children with cancer. These results underscore the significant influence of rumination and metacognition in facilitating posttraumatic growth in this specific population. Consequently, interventions aimed at fostering deliberate rumination hold substantial potential for promoting posttraumatic growth among parents of children diagnosed with cancer. IMPLICATIONS FOR NURSING PRACTICE: This research guides nurses in addressing rumination, metacognition, and posttraumatic growth in parents of children with cancer. By adopting a holistic approach, nurses can enhance parents' well-being and resilience in the face of a child's cancer diagnosis.

Investigation of cognitive functions in children with bone tumours and lymphoma in treatment process.

BACKGROUND: Neurocognitive sequelae are among the most debilitating effects of cancer observed in children. Yet we know very little about the impact on neurocognitive functioning, especially cancer types that develop outside the central nervous system. This study aimed to assess and compare the cognitive functions (CoF) of children with bone tumours and lymphoma in the treatment process. METHODS: The CoF of children with bone tumours (n = 44), lymphoma (n = 42) and their non-cancer peers (n = 55) were assessed with Dynamic Occupational Therapy Assessment for Children. The CoF of children with cancer were compared with their non-cancer peers. Then, children with bone tumours and lymphoma were compared in binary. RESULTS: One-hundred forty-one children aged 6-12 years with a mean age of 9.4 (SD = 1.5) were included in this study. The orientation and visuomotor construction functions of children with bone tumours and orientation, praxis and visuomotor construction functions of children with lymphoma performed worse than their non-cancer peers (pk < 0.001). While orientation, spatial perception, visuomotor construction and thinking operations functions of children with bone tumours and lymphoma were similar (pk > 0.016), praxis functions of children with lymphoma were found to be worse than children with bone tumours (pk < 0.016). CONCLUSIONS: Our findings show that children with bone tumours and lymphoma in the process of treatment are at risk for impairment of their CoF. The findings highlight the importance of assessing CoF in children with bone tumours and lymphoma and considering specific differences between groups. It is essential to assess CoF and develop early intervention plans in these children.

Financial hardship among siblings of long-term survivors of childhood cancer: A Childhood Cancer Survivor Study report.

BACKGROUND: Siblings of children with cancer may experience adverse household economic consequences, but their financial outcomes in adulthood are unknown. METHODS: A total of 880 siblings (aged 18-64 years) of adult-aged childhood cancer survivors were surveyed to estimate the prevalence of financial hardship by three established domains (behavioral, material, and psychological). For individual financial hardship items matching the contemporaneous National Health Interview Survey or Behavioral Risk Factor Surveillance System, siblings were compared with the general population by calculating adjusted prevalence odds ratios (ORs) to sample-weighted responses. Multivariable logistic regression models examined associations between sibling characteristics and each hardship domain and between sibling hardship and survivors' cancer/treatment characteristics. RESULTS: Behavioral, material, and psychological hardship was reported by 24%, 35%, and 28%, respectively. Compared with national survey respondents, siblings were more likely to report worries about medical bills (OR, 1.14; 95% confidence interval [CI], 1.06-1.22), difficulty affording nutritious foods (OR, 1.79; 95% CI, 1.54-2.07), and forgoing needed medical care (OR, 1.38; 95% CI, 1.10-1.73), prescription medications (OR, 2.52; 95% CI, 1.99-3.20), and dental care (OR, 1.34; 95% CI, 1.15-1.57) because of cost. Sibling characteristics associated with reporting financial hardship in one or more domains included female sex, older age, chronic health conditions, lower income, not having health insurance, high out-of-pocket medical expenditures, and nonmedical/nonhome debt. No survivor cancer/treatment characteristics were associated with sibling financial hardship. CONCLUSIONS: Adult siblings of childhood cancer survivors were more likely to experience financial hardship compared with the general population. Childhood cancer may adversely affect entire households, with potentially lasting implications.

Efficacy, Safety, and Pain Level of Subcutaneous Catheter Use for Administration of Granulocyte Colony-Stimulating Factor (G-CSF) in Children With Cancer: A Randomized Pilot Study.

Background: The aim of this study was to explore the efficacy, safety, and pain level of granulocyte colony-stimulating factor (G-CSF) administration via a subcutaneous catheter compared with direct injection in children with cancer. Method: This was a pilot randomized controlled trial of standard G-CSF administration versus subcutaneous catheter administration. Children 2-15 years of age who were beginning G-CSF after their first chemotherapy cycle and anticipated to receive G-CSF following the next three cycles of chemotherapy were eligible. Efficacy, safety, and pain were as outcomes of the study. Results: Twenty-nine children with cancer (median age 12 years) were enrolled in the study (16 children in the subcutaneous catheter group and 13 children in the direct injection group). During Cycle 2, the median number of days to reach absolute neutrophil count (ANC) ≥ 500/mm3 was greater among those in the subcutaneous catheter group (12 vs. 10; p = .02). In Cycle 3, however, the subcutaneous catheter group received fewer doses of G-CSF (8 vs. 12; p = .004). No complications related to subcutaneous catheter use were observed. No differences in the visual analog scale pain score were observed between groups in Cycles 1 to 3; however, in Cycle 4, children in the subcutaneous catheter group had lower median pain scores than those in the direct subcutaneous injection group (Mdn = 0, [IQR] = 0-2 vs. Mdn = 1, IQR = 0-6; p < 0.01). Conclusion: Results demonstrated administering G-CSF via a subcutaneous catheter enables ANC to recover with no pain or complications associated with its use. Thus, oncology teams may consider this administration method to be used in children with cancer.

Effect of Educational Intervention Based on Self-Efficacy Theory on the Caring Behaviour of Mothers Who Have Children With Cancer.

Self-efficacy, as one of the concepts of the empowerment model, plays a role in increasing caring behaviour. Accordingly, our study aimed to evaluate the effect of educational intervention based on self-efficacy theory on the caring behaviour of mothers who have children with cancer. This quasi-experimental study was conducted on all mothers (N = 86) of children with cancer undergoing chemotherapy who were referred to Bandar Abbas Children's Hospital. All mothers participated in 10 training sessions based on the four foundations of self-efficacy theory. The results indicated a significant increase in the mean score of mothers' self-efficacy at first and second follow-ups respectively by 10.2 and 10.9 after intervention (P < 0.001). Furthermore, the mean score of caring behaviour was increased after the intervention for the first and second follow ups by 24.6 and 25.9 from the baseline respectively (P < 0.001). The results of the present study indicated that an educational program for mothers increased their caring behaviour and self-efficacy with the increase of self-efficacy, mothers' caring behaviour was promoted. Authorities and practitioners are suggested to pay more attention to designing educational programs based on health models and theories.

Screening for early warning of psychological crisis and intervention in children aged 8-18 years with cancer: a historical controlled trial.

Background: Childhood cancer is becoming an emerging healthcare issue in mainland China. Extensive evidence in the literature has demonstrated that cancer and its treatment experience can cause psychological distress that can lead to developmental problems in children with cancer. This study aims to screen for early warning of psychological crisis in children aged 8-18 years with cancer, establish a model of early warning intervention for children with cancer, and explore its application effects. Methods: We recruited 345 children with cancer and aged 8-18 years as the study participants, of whom 173 children were selected as historical controls during the period between December 2019 and March 2020 and 172 children were selected as the intervention group during the period between July 2020 and October 2020. The routine nursing model was adopted for the control group, and the early warning and intervention model was applied for the intervention group. The early warning and intervention model consisted of four stages: (1) establishing a management team to assess the risk of psychological crisis, (2) developing a three-level early warning response mechanism, (3) developing specific response plans, and (4) creating an evaluation summary and optimization mode. The DASS-21 was used to evaluate the psychological status of children with cancer before and 3 months after the intervention. Results: The average age of the control group was 11.43 ± 2.39 years, with 58.96% boys and 61.27% diagnosed with leukemia. The average age of the intervention group was 11.62 ± 2.31 years, with 58.72% boys and 61.63% diagnosed with leukemia. There was a significant reduction in depressive symptoms (4.91 ± 3.98, t = 12.144, P < 0.05), anxiety symptoms (5.79 ± 4.34, t = 8.098, P < 0.05), and stress symptoms (6.98 ± 4.67, t = 11.22, P < 0.05) in the intervention group. The incidence rates of depression, anxiety, and stress were significantly lower in the intervention group (12.79%, 29.07%, and 5.23%, respectively) than in the control group (46.82%, 49.71%, and 27.17%, respectively) (all P's < 0.05). Conclusions: Our study suggests that the early detection and timely management of psychological symptoms through a nursing intervention model can effectively reduce depressive, anxiety, and stress symptoms in Chinese children with cancer. Future work should include conducting qualitative interviews to understand the psychological experiences of children with cancer throughout their entire life cycle.

Positive Mental Health Scale (PMHS) in Parents of Children with Cancer: A Psychometric Evaluation Using Item Response Theory.

Mental health is currently a public health issue worldwide. However, evidence is lacking regarding the validity of the instruments used to measure and assess positive mental health in specific populations. The objective of this study was to evaluate the psychometric properties of the PMHS using IRT. A cross-sectional retrospective study with non-probabilistic convenience sampling was conducted with 623 parents of children undergoing cancer treatment at the National Institute of Health in Mexico City. The participants responded to a battery of tests, including a sociodemographic questionnaire, the PMHS, Measurement Scale of Resilience, Beck Depression Inventory, Inventory of Quality of Life, Beck Anxiety Inventory, an interview regarding caregiver burden, and the World Health Organization Well-Being Index. PMHS responses were analyzed using Samejima's graded response model. The PMHS findings indicated that the IRT-based graded response model validated the single latent trait model. The scale scores were independent of depression, anxiety, well-being, caregiver burden, quality of life, and resilience. The PMHS scores were associated with low subjective well-being. The PMHS findings reveal that from an IRT-based perspective, this scale is unidimensional and is a valid, reliable, and culturally relevant instrument for assessing positive mental health in parents of children with chronic diseases.

Prognosis Communication in Pediatric Oncology: A Systematic Review.

BACKGROUND: While communication plays an important role in medicine, it also often represents a challenge when the topic at hand is the prognosis of a high-risk condition. When it comes to pediatric oncology, the challenge becomes even greater for physicians who have to adapt their discourse to both the child and their family. METHODS: Following the PRISMA guidelines, an advanced search on PubMed, Scopus and the Cochrane Library was performed, from 1 January 2017 to 31 October 2022. Demographic data for caregivers, pediatric patients and physicians were extracted, as well as diagnosis, prognosis, presence at discussion, emotional states and impact on life, trust, decision roles, communication quality and other outcomes. RESULTS: A total of 21 articles were analyzed. Most studies (17) focused on caregivers, while only seven and five studies were focused on children and physicians, respectively. Most parents reported high trust in their physicians (73.01%), taking the leading role in decision making (48%), moderate distress levels (46.68%), a strong desire for more information (78.64%), receiving high-quality information (56.71%) and communication (52.73%). Most children were not present at discussions (63.98%); however, their desire to know more was expressed in three studies. Moreover, only two studies observed children being involved in decision making. Most physicians had less than 20 years of experience (55.02%) and reported the use of both words and statistics (47.3%) as a communication method. CONCLUSIONS: Communication research is focused more on caregivers, yet children may understand more than they seem capable of and want to be included in the conversation. More studies should focus on and quantify the opinions of children and their physicians. In order to improve the quality of communication, healthcare workers should receive professional training.

Importance of Social Support of Parents of Children with Cancer: A Multicomponent Model Using Partial Least Squares-Path Modelling.

The purpose of the present study is to build a model combining some variables that have been previously studied separately to improve our understanding on how they relate in parents of children with cancer. A total of 112 parents with an average age of 41 completed the self-assessment questionnaires containing the factors studied: social support received, social support provided, stress, adjustment of parents and life satisfaction. Two models were developed: one for social support received and one for social support provided. Structural equation models based on the variance estimated through partial least squares were used to analyze factors involved in quality of life based on an exploratory model of second order. The estimated model was robust in terms of quality of measurement (reliability and validity). According to results from the structural model, in the model of social support received, the impact of social support received on stress was considerable (ß = -0.26; p = 0.02) and it explained 16% of the variance. The impact of social support received by parents on their adjustment (ß = -0.56; p < 0.001) was also considerable, explaining 32% of the variance. Finally, adjustment of parents also showed an effect on life satisfaction (ß = -0.33; p < 0.001) and it explained 26% of the variance. However, the relation between social support received (ß = 0.15; p = 0.11) and life satisfaction, the relation between stress (ß = -0.15; p = 0.08) and life satisfaction, and the relation between adjustment of parents (ß = 0.20; p = 0.07) and stress were not significant. In the model of social support provided by parents, social support provided (ß = 0.35; p < 0.001), and adjustment of parents (ß = -0.31; p < 0.01) impacted life satisfaction, explaining 36% of the variance. Social support provided (ß = -0.34; p < 0.01) impacted adjustment of parents and it explained 12% of the variance. Adjustment of parents (ß = 0.28; p < 0.05) also impacted parents' perception of stress, explaining 14% of the variance. However, the relation between social support provided (ß = -0.17; p = 0.06) and stress, and the relation between stress (ß = -0.13; p = 0.08) and life satisfaction, were not significant. Social support received showed a strong connection with stress and parents' adjustment. Additionally, social support received showed a decrease in stress and parents' adjustment. Social support provided by parents and the adjustments they experience are linked to their life satisfaction. Additionally, social support provided showed a decrease in adjustment and an increase in parents' life satisfaction. The models can be used to improve parents' situations and it has strong practical implications.

Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies.

BACKGROUND: Health-related quality of life (HRQOL) is a key concept in pediatric oncology. This systematic review aims to update the conceptual HRQOL model by Anthony et al. (Qual Life Res 23(3):771-789, 2014), covering physical, emotional, social and general HRQOL aspects, and to present a comprehensive overview of age- and disease-specific HRQOL issues in children with cancer. METHODS: Medline, PsychINFO, the Cochrane Database for Systematic Reviews (CDSR), and the COSMIN database were searched (up to 31.12.2020) for publications using patient-reported outcome measures (PROMs) and qualitative studies in children with cancer (8-14-year) or their parents. Items and quotations were extracted and mapped onto the conceptual model for HRQOL in children with cancer mentioned above. RESULTS: Of 2038 identified studies, 221 were included for data extraction. We identified 96 PROMS with 2641 items and extracted 798 quotations from 45 qualitative studies. Most items and quotations (94.8%) could be mapped onto the conceptual model. However, some adaptations were made and the model was complemented by (sub)domains for 'treatment burden', 'treatment involvement', and 'financial issues'. Physical and psychological aspects were more frequently covered than social issues. DISCUSSION: This review provides a comprehensive overview of HRQOL issues for children with cancer. Our findings mostly support the HRQOL model by Anthony et al. (Qual Life Res 23(3):771-789, 2014), but some adaptations are suggested. This review may be considered a starting point for a refinement of our understanding of HRQOL in children with cancer. Further qualitative research will help to evaluate the comprehensiveness of the HRQOL model and the relevance of the issues it encompasses.