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1.
Pediatr Blood Cancer ; : e31167, 2024 Jul 04.
Article in English | MEDLINE | ID: mdl-38963191

ABSTRACT

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.

2.
Child Neuropsychol ; : 1-15, 2024 Jun 04.
Article in English | MEDLINE | ID: mdl-38832834

ABSTRACT

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.

3.
BMC Womens Health ; 24(1): 177, 2024 Mar 14.
Article in English | MEDLINE | ID: mdl-38486146

ABSTRACT

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.


Subject(s)
Breast Feeding , Neoplasms , Female , Child , Humans , Financial Stress , Ghana , Mothers , Qualitative Research
4.
J Pediatr Nurs ; 76: e34-e41, 2024.
Article in English | MEDLINE | ID: mdl-38307757

ABSTRACT

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.


Subject(s)
Hope , Neoplasms , Parents , Resilience, Psychological , Spirituality , Humans , Female , Male , Child , Cross-Sectional Studies , Neoplasms/psychology , Neoplasms/therapy , Turkey , Parents/psychology , Adaptation, Psychological , Surveys and Questionnaires , Adult , Adolescent , Child, Preschool
5.
Child Care Health Dev ; 50(1): e13139, 2024 01.
Article in English | MEDLINE | ID: mdl-37269221

ABSTRACT

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.


Subject(s)
Bone Neoplasms , Lymphoma , Child , Humans , Cognition
6.
Semin Oncol Nurs ; 40(1): 151552, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38072688

ABSTRACT

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.


Subject(s)
Metacognition , Neoplasms , Posttraumatic Growth, Psychological , Rumination, Cognitive , Child , Humans , Surveys and Questionnaires
7.
Cancer ; 130(7): 1125-1136, 2024 04 01.
Article in English | MEDLINE | ID: mdl-38100563

ABSTRACT

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.


Subject(s)
Cancer Survivors , Neoplasms , Adult , Humans , Child , Female , Siblings , Neoplasms/epidemiology , Neoplasms/therapy , Financial Stress/epidemiology , Cost of Illness , Survivors , Surveys and Questionnaires
8.
J Pediatr Hematol Oncol Nurs ; 40(5): 305-312, 2023.
Article in English | MEDLINE | ID: mdl-37920922

ABSTRACT

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.


Subject(s)
Neoplasms , Humans , Child , Pilot Projects , Neoplasms/drug therapy , Injections, Subcutaneous , Granulocyte Colony-Stimulating Factor/adverse effects , Pain/etiology
9.
J Mother Child ; 27(1): 93-101, 2023 Jun 01.
Article in English | MEDLINE | ID: mdl-37668441

ABSTRACT

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.


Subject(s)
Caregivers , Maternal Behavior , Mothers , Neoplasms , Self Efficacy , Mothers/education , Neoplasms/therapy , Non-Randomized Controlled Trials as Topic , Humans , Child , Female , Adult , Middle Aged , Caregivers/education , Iran
10.
Front Pediatr ; 11: 1156185, 2023.
Article in English | MEDLINE | ID: mdl-37425277

ABSTRACT

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.

11.
Cancers (Basel) ; 15(10)2023 May 13.
Article in English | MEDLINE | ID: mdl-37345081

ABSTRACT

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.

12.
Children (Basel) ; 10(6)2023 May 30.
Article in English | MEDLINE | ID: mdl-37371204

ABSTRACT

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.

13.
Article in English | MEDLINE | ID: mdl-36767137

ABSTRACT

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.


Subject(s)
Neoplasms , Quality of Life , Humans , Child , Adult , Least-Squares Analysis , Reproducibility of Results , Social Support , Surveys and Questionnaires
14.
Am J Hosp Palliat Care ; 40(1): 34-42, 2023 Jan.
Article in English | MEDLINE | ID: mdl-35535490

ABSTRACT

BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.


Subject(s)
Adaptation, Psychological , Neoplasms , Child , Humans , Parents/psychology , Neoplasms/therapy , Neoplasms/psychology , Emotions , Internet
15.
Qual Life Res ; 32(4): 965-976, 2023 Apr.
Article in English | MEDLINE | ID: mdl-36152110

ABSTRACT

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.


Subject(s)
Neoplasms , Quality of Life , Humans , Child , Quality of Life/psychology , Neoplasms/psychology , Qualitative Research , Patient Reported Outcome Measures
16.
Indian J Pediatr ; 2022 Nov 23.
Article in English | MEDLINE | ID: mdl-36424520

ABSTRACT

OBJECTIVE: To investigate the role of parents (family) as participants in their child's cancer diagnosis, treatment, and rehabilitation. METHODS: This survey research was carried out by the Institute of Social Sciences, I.M. Sechenov First Moscow State Medical University (Sechenov University) in 2019-2020. The survey involved 237 parents of children with cancer admitted to oncological clinics of the North Caucasus Federal District. More than half of parents (54.9%) took their child to a pediatrician because of the unusual and strange symptoms. The overwhelming majority of respondents (99.1%) admitted stress and shock on hearing the cancer diagnosis. Besides emotional issues, they reported financial problems (55.3%), and a change in lifestyle (38.4%). RESULTS: During the treatment period, parents sought financial and organizational support from medical institutions (49.4%), as well as charitable and public organizations (40.5%). At the end of treatment, almost half of the respondents (48.9%) applied for rehabilitation services. CONCLUSION: Parents play one of the key roles in their child's cancer journey. They provide the child with basic psychological support and care, and they search for resources to enable treatment and rehabilitation. Parents help their child re-enter and return to a normal life (schooling, communication with friends, etc.) after going through cancer.

17.
Eur J Cancer Care (Engl) ; 31(6): e13727, 2022 Nov.
Article in English | MEDLINE | ID: mdl-36239087

ABSTRACT

OBJECTIVE: It was aimed to systematically synthesise the available literature on examining the effect of chewing gum in the management/reduction of chemotherapy-induced oral mucositis in children. METHODS: The PRISMA was followed for the systematic review. All published studies obtained from the relevant databases were examined while the research question and inclusion and exclusion criteria were considered. The Joanna Briggs Institute (JBI) critical appraisal tools were used to evaluate the quality of the studies. RESULTS: A total of five studies met the inclusion criteria: three randomised controlled trials (RCT) and two quasi-experimental studies with a total of 461 paediatric oncology patients were included. Heterogeneity was found across all studies regarding the application of gum chewing and regarding the effectiveness of gum chewing. Two RTCs and one quasi-experimental study reported that gum chewing is not effective to reduce severe oral mucositis, but effective to reduce moderate and mild oral mucositis, and one RTC reported that gum chewing is not effective to reduce oral mucositis. CONCLUSION: Experimental studies particularly randomised controlled trials using rigorous designs, consistent outcome measures, and larger sample sizes are required to determine the efficacy of chewing gum in reducing chemotherapy-induced oral mucositis in paediatric oncology patients. Study was registered in PROSPERO and number was CRD42022328916.


Subject(s)
Antineoplastic Agents , Chewing Gum , Stomatitis , Child , Humans , Antineoplastic Agents/adverse effects , Neoplasms/drug therapy , Randomized Controlled Trials as Topic , Stomatitis/chemically induced , Stomatitis/prevention & control
18.
Article in English | MEDLINE | ID: mdl-36141586

ABSTRACT

Parents whose children suffer from cancer experience chronic negative emotions, which may have a detrimental influence on their mental health. The aim of this study, conducted with a group of parents whose children were hospitalized for leukemia or lymphoma, was to assess stress, anxiety, depression, aggression and stress coping strategies as well as the correlations that take place between them. The study was conducted with a group of 101 parents of early school children (aged between 7 and 12) who were hospitalized for cancer in three medical centers in southern Poland. The HADS -M, PSS-10 and COPE questionnaires were used in the study. Mothers were found to experience higher levels of anxiety, depression and stress as compared to fathers. It was more common for men to resort to the strategy of substance use. Socio-demographic variables did not determine the examined emotions, the level of stress and the choice of stress coping strategies, with the exception of the strategy of suppression of competing activities. A positive relationship was found between the incidence of negative emotions and the selected strategies of coping with stress. Early diagnosis of disorders and assessment of parents' strategies of coping might help to counteract long-term consequences of trauma.


Subject(s)
Neoplasms , Stress, Psychological , Adaptation, Psychological , Child , Emotions , Female , Humans , Lymphocytes , Male , Mothers/psychology , Stress, Psychological/psychology , Surveys and Questionnaires
19.
BMC Palliat Care ; 21(1): 104, 2022 Jun 07.
Article in English | MEDLINE | ID: mdl-35668398

ABSTRACT

BACKGROUND: Caring for children living with life-threatening and life-limiting illnesses can be challenging. Parents' roles as the main caregivers can be complex with extensive responsibilities. The experiences of family caregivers can provide key insights into the provision of home-based Pediatric Palliative Care (PPC) for seriously ill children. This study is aimed at exploring the experiences of family caregivers of children diagnosed with cancer while receiving home-based PPC. METHODS: This was a qualitative study. This study used semi-structured interviews which were audio-recorded with family caregivers of twelve children diagnosed with cancer who had received home-based PPC. The interviews were transcribed verbatim. The data were analyzed using qualitative content analysis. The reporting of the study was based on the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. RESULTS: Three main themes emerged: (1) The implementation of home-based PPC; (2) The benefits of home-based PPC; and (3) The family caregivers' hopes of the home-based PPC service and their impressions of home-based PPC. The implementation of home-based PPC described the experiences of family caregivers in receiving home-based PPC provided by nurses with particular attention to the bio-psychosocial-spiritual aspects. Family caregivers experienced several benefits from the home-based PCC service, where holistic care was provided for both the patient and the family. Family caregivers shared their hopes prior to receiving support from competent health care professionals to care for their sick child at home and improve the child's quality of life. They confirmed that these hopes were fulfilled through the home-based PPC service delivered by Rachel House. CONCLUSIONS: Home-based PPC provides several benefits with a positive impact for both the children diagnosed with cancer as well as their families. Nurses involved in the home-based PPC service provide holistic care with a family-centered approach. We believe that children with terminal illnesses and their families need and deserve home-based PPC during difficult times.


Subject(s)
Caregivers , Neoplasms , Child , Family , Humans , Indonesia , Neoplasms/therapy , Palliative Care , Qualitative Research , Quality of Life
20.
Glob Pediatr Health ; 9: 2333794X221092738, 2022.
Article in English | MEDLINE | ID: mdl-35521436

ABSTRACT

Assessing the health-related quality of life (HRQOL) is highly recommended as a standard of care for children with cancer in conjunction with medical treatment. The Pediatric Quality of Life Inventory (PedsQL) Cancer Module is a standard tool designed to assess the HRQOL among pediatric oncology patients. This study aimed to evaluate the reliability and correlation of the PedsQL 3.0 Cancer Module in Thai version between child and parent reports. A cross-sectional study was conducted on 85 Thai children with cancer and their families. Excellent internal consistency of the PedsQL 3.0 Cancer Module of the Thai version was addressed among child and parent reports (0.92 and 0.94, respectively). Overall positive correlations were also found between child and parent reports (r = 0.61, P < .001). However, the statistically significant differences of HRQOL scores between child and parent reports were determined on procedural anxiety (70.05 ± 26.67 vs 60.03 ± 25.6, P = .003), treatment anxiety (88.15 ± 17.37 vs 76.82 ± 26.7, P = .001), worry (66.67 ± 25.59 vs 55.34 ± 30.37, P = .003) and the total score (74.37 ± 15.7 vs 70.42 ± 17.15, P = .034). This study demonstrated desirable internal reliability with positive correlations between child and parent reports of the PedsQL 3.0 Cancer Module in Thai version, although possible differences between child and parent HRQOL scores should be considered.

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