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1.
J Pediatr Nurs ; 75: e1-e9, 2024.
Article in English | MEDLINE | ID: mdl-38212174

ABSTRACT

PURPOSE: Pediatric cancer is a significant health concern in China, and evaluating the impact of cancer and its treatment on the well-being of young patients is essential for both clinical care and research purposes. This study aimed to psychometrically validate the Patient-reported Outcomes Measurement Information System Pediatric-25 Profile (PROMIS-Pediatric-25) among Chinese children with cancer. DESIGN AND METHODS: We enrolled a group of 114 children living with cancer between the ages of 8 and 17. Each participant completed questionnaires that covered sociodemographic and clinical information and the PROMIS-Pediatric-25. The floor and ceiling effect was examined. Cronbach's alpha and split-half coefficient were examined to determine the reliability. Factor structure was explored by factor analysis. Three assumptions of Rasch model-based item response theory (IRT) were assessed. Differential item functioning (DIF) was investigated concerning factors of gender, diagnosis, and treatment stage. RESULTS: The floor or ceiling effects were detected for six domains. The reliability was found to be excellent. Furthermore, the factor structure of these six domains was validated. Our analysis confirmed that the assumptions required for IRT were met with acceptable unidimensionality, local independence, and good monotonicity. Additionally, we observed measurement equivalence, with outstanding levels of DIF across factors such as gender, diagnosis, and treatment stage. CONCLUSION: PROMIS-Pediatric 25 is a highly reliable and valid instrument for evaluating key domains of health-related quality of life in Chinese pediatric cancer patients. PRACTICE IMPLICATION: Nursing practice could engage the PROMIS-Pediatric 25 for accurate and quick children symptom and function assessment.


Subject(s)
Neoplasms , Quality of Life , Humans , Child , Adolescent , Reproducibility of Results , Psychometrics , Surveys and Questionnaires , Neoplasms/diagnosis , Neoplasms/therapy
2.
Cancer Nurs ; 47(1): E1-E9, 2024.
Article in English | MEDLINE | ID: mdl-36881644

ABSTRACT

BACKGROUND: Children and adolescents may experience a variety of subjective adverse events (AEs) caused by cancer treatment. The identification of distinct groups of patients is crucial for guiding symptomatic AE management interventions to prevent AEs from worsening. OBJECTIVE: The aim of this study was to identify subgroups of children with cancer experiencing similar patterns of subjective toxicities and evaluate differences among these subgroups in demographic and clinical characteristics. METHODS: A cross-sectional survey was conducted of 356 children in China with malignancies who received chemotherapy within the past 7 days using the pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events. A latent class analysis (LCA) was conducted to identify subgroups of patients with distinct profiles of symptomatic AE occurrence. RESULTS: Nausea (54.5%), anorexia (53.4%), and headache (39.3%) were the top 3 AEs children experienced. Nearly all participants (97.8%) experienced ≥1 core AEs, and 30.3% experienced ≥5 AEs. The LCA results identified 3 subgroups ("high gastrotoxicity and low neurotoxicity" [53.2%], "moderate gastrotoxicity and high neurotoxicity" [23.6%], and "high gastrotoxicity and high neurotoxicity" [22.8%]). The subgroups were differentiated by monthly family per-capita income, time since diagnosis, and Karnofsky Performance Status score. CONCLUSIONS: Children experienced multiple subjective toxicities during chemotherapy, especially gastrotoxicity and neurotoxicity. Heterogeneity was found in the LCA in the patients' toxicities. The prevalence of toxicities could be distinguished by the children's characteristics. IMPLICATIONS FOR PRACTICE: The results showing different subgroups in our study may assist clinical staff in focusing on patients with higher toxicities to provide effective interventions.


Subject(s)
Neoplasms , Adolescent , Humans , Child , Cross-Sectional Studies , Latent Class Analysis , Neoplasms/drug therapy , Patient Reported Outcome Measures , Nausea/chemically induced
3.
Trials ; 24(1): 732, 2023 Nov 15.
Article in English | MEDLINE | ID: mdl-37964365

ABSTRACT

BACKGROUND: Disrupted sleep is believed to contribute to short- and long-term neurodevelopmental problems in very preterm infants (VPIs). This study presents a protocol for an evaluator-blinded, randomized crossover trial. It aims to assess the sleep efficiency of hospitalized VPIs by providing multisensory stimulation bundles. Furthermore, it aims to observe the intervention impacts on sleep during hospitalization of the VPIs and their sleep and neurodevelopmental outcomes during the first year of post-discharge follow-up. METHODS: The study will be conducted in the neonatology department of a tertiary pediatric teaching hospital. All the eligible VPIs will undergo two types of care in random order: "standard care" (2 weeks) and "standard care plus multisensory stimulation bundles," each lasting 2 weeks. A generated list of random numbers will be used for case sequence allocation. Sleep outcomes will be evaluated using the Actiwatch-2 Actigraph. Moreover, the amplitude-integrated electroencephalography and the Griffiths Mental Development Scales will be used to measure the neurodevelopmental outcomes during hospitalization and in the first year of follow-up of the VPIs. DISCUSSION: The intervention protocol of this study differs from that of other traditional interventions by producing precise and consistent supportive stimulations, similar to maternal tactile, auditory, posture, and visual effects for hospitalized VPIs. This protocol could be an effective measure to facilitate sleep and early neurodevelopment of VPIs. The expected outcomes will help confirm the implementation and generalization of the multisensory stimulation bundles' care protocol in neonatology departments. We expect that the study will positively impact hospitalized VPIs, especially in their sleep and early neurodevelopmental outcomes. It will also provide a new perspective regarding parent and infant interaction strategies, particularly for newborn intensive care units that limit visits because of the global spread of COVID-19. TRIAL REGISTRATION: Chinese Clinical Trial Registry ChiCTR 2200059099. Registered on 25 April 2022, https://www.chictr.org.cn/showproj.html?proj=166980 ; the Hospital Research Ethics Committee (approval number: SCMCIRB-K2021086-1, Version 01), approved on 21 January 2022.


Subject(s)
Aftercare , Infant, Premature , Infant , Infant, Newborn , Humans , Child , Cross-Over Studies , Patient Discharge , Sleep , Randomized Controlled Trials as Topic
4.
Cancer Nurs ; 2023 Oct 30.
Article in English | MEDLINE | ID: mdl-37903304

ABSTRACT

BACKGROUND: Unpleasant symptoms are common in children with cancer. However, research identifying subgroups of children with cancer who experience similar levels of self-reported symptoms in China is limited. OBJECTIVES: This study aimed to classify the symptom profiles of children with cancer and detect the possible predictors of the profiles and their effect on children's quality of life (QoL). METHODS: A total of 272 children aged 8 to 17 years completed the Chinese version of the Pediatric Patient-Reported Outcomes Measurement Information System short form measures, the Pediatric QOL Inventory general core and cancer modules. Latent profile analysis was used to identify symptom profiles, and ordinal logistic regression and analysis of variance were used to examine predictors of symptom profile membership and profile differences on QoL. RESULTS: The best fit was a 3-profile model: low, moderate, and severe symptom distress. Children who had been inpatients in the past 7 days and were currently under treatment are more likely to have severe symptoms. Participants in the low symptom distress profile reported significantly greater QoL than those in the other profiles. CONCLUSIONS: Children with cancer are heterogeneous in their experience of symptoms. Children's characteristics, such as inpatient history and treatment status, are predictors of profiles; different symptom profiles are associated with QoL. IMPLICATIONS FOR PRACTICE: This study identified distinct groups of patients who predictably experience higher symptoms and their predictors, which could help to place children within a profile and perhaps allow nurses to provide targeted supportive care to match children's specific symptom profile.

5.
Cancer Nurs ; 2023 Aug 08.
Article in English | MEDLINE | ID: mdl-37552228

ABSTRACT

BACKGROUND: Chimeric antigen receptor T-cell therapy-related severe cytokine release syndrome (sCRS) has seriously affected the life safety of patients. OBJECTIVE: To explore the influencing factors of sCRS in children with B-cell hematological malignancies and build a risk prediction model. METHODS: The study recruited 115 children with B-cell hematological malignancies who received CD19- and CD22-targeted chimeric antigen receptor T-cell therapy. A nomogram model was established based on symptomatic adverse events and highly accessible clinical variables. The model discrimination was evaluated by the area under the receiver operating characteristic curve. The calibration of our model was evaluated by the calibration curve and Hosmer-Lemeshow test. The bootstrap self-sampling method was used to internally validate. RESULTS: Thirty-seven percent of the children experienced sCRS. Indicators included in the nomogram were tumor burden before treatment, thrombocytopenia before pretreatment, and the mean value of generalized muscle weakness and headache scores. The results showed that the area under the receiver operating characteristic curve was 0.841, and the calibration curve showed that the probability of sCRS predicted by the nomogram was in good agreement with the actual probability of sCRS. The Hosmer-Lemeshow test indicated that the model fit the data well (χ2 = 5.759, P = .674). The concordance index (C-index) obtained by internal validation was 0.841 (0.770, 0.912). CONCLUSIONS: The nomogram model constructed has a good degree of discrimination and calibration, which provides a more convenient and visual evaluation tool for identifying the sCRS. IMPLICATIONS FOR PRACTICE: Incorporation of patient-reported outcomes into risk prediction models enables early identification of sCRS.

6.
Cancer Nurs ; 46(1): E31-E40, 2023.
Article in English | MEDLINE | ID: mdl-35583994

ABSTRACT

BACKGROUND: The original English Pediatric Patient-Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) captures symptomatic adverse events (AEs) in cancer clinical trials from the perspective of pediatric patients. A Chinese version was needed to encourage the use of the Pediatric PRO-CTCAE among Chinese pediatric oncology patients. OBJECTIVE: This study translated and linguistically validated a simplified Chinese version of the Pediatric PRO-CTCAE for oncological patients aged 7 to 18 years. METHODS: Following the Functional Assessment of Chronic Illness Therapy translation methodology, 130 questions were translated into Chinese. Semistructured cognitive interviews investigated the comprehensibility and clarity of terms for symptoms, attributes, and response options. Two rounds of interviews were conducted with 48 native Chinese-speaking children aged 7 to 18 years who were undergoing chemotherapy or radiotherapy treatment. RESULTS: Most items, response options, and recall periods were well understood by children across the age range in round 1. Nineteen items posed comprehension difficulties for 9 participants and were revised and retested without further difficulties. CONCLUSIONS: The Pediatric PRO-CTCAE was successfully developed and linguistically validated among Chinese oncology patients. The results indicated that the Chinese Pediatric PRO-CTCAE was semantically and conceptually equivalent to the English version. IMPLICATIONS FOR PRACTICE: The availability of the simplified Chinese Pediatric PRO-CTCAE will facilitate the generation of patient-reported outcome data about symptomatic AEs for children with cancer in China and thus improve our understanding of children's experience of treatment-related symptoms.


Subject(s)
Neoplasms , Patient Reported Outcome Measures , United States , Humans , Child , National Cancer Institute (U.S.) , Surveys and Questionnaires , Neoplasms/drug therapy , Neoplasms/diagnosis , China , Cognition
7.
Asia Pac J Oncol Nurs ; 9(12): 100166, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36479577

ABSTRACT

Objective: Symptom management is a persistent challenge in pediatric oncology. The WeChat Mini Program, a small smartphone application that functions within WeChat, has the potential to assist in symptom management. This study aimed to develop a symptom management WeChat Mini Program for parents and children with cancer aged 5-17 years old and evaluate its usability. Methods: Based on the semi-structured interviews with parents of children with cancer, experts in pediatric oncology and informatics and a survey of children's symptom experience, multidisciplinary research group meetings were conducted to confirm the structure and main contents of the Mini Program. The iterative method was used to develop the Mini Program. A mixed-method study was conducted to test its usability with 10 pairs of parents and children with cancer. The quantitative data were collected through the Poststudy System Usability Questionnaire, and qualitative data were collected from interviews. Results: The Mini Program "Child SMILE" was developed, which includes a symptom assessment and management module, an information and emotional support module, a communication module among the parents and medical professionals, and a personal information module. Most users reported that the Mini Program is user-friendly, with satisfaction scores on the Poststudy System Usability Questionnaire ranging from 5.2 to 5.7 (out of 7.0) in four dimensions. In qualitative interviews, most participants thought the Mini Program was convenient, easy to use, and helpful. Conclusions: It can be concluded that the Mini Program satisfies the needs of parents of children with cancer and has the potential to benefit the symptom management of children with cancer.

8.
J Pediatr Hematol Oncol Nurs ; 39(5): 326-334, 2022.
Article in English | MEDLINE | ID: mdl-36129888

ABSTRACT

Background: Because routine nursing quality indicators are not suitable to evaluate pediatric oncology nursing care, this study aimed to identify a set of quality indicators for pediatric oncology nursing care in mainland China. Method: This prospective investigation utilized a modified Delphi technique and an analytic hierarchy process. A survey questionnaire was developed using a literature review and semi-structured interviews. Fifteen invited experts evaluated the importance of potential indicators through three rounds of Delphi survey by email in 2018. The importance weight of each indicator was identified through analytic hierarchy process. Results: In the Delphi survey, the average authoritative coefficient was 0.93-0.96 for each round of the inquiry. After three rounds of survey, 29 quality indicators were identified as important nursing outcomes for assessing the quality of pediatric oncology nursing care in mainland China. The importance rating mean score of indicators ranged between 4.67 and 5.00 on a 5-point scale, and the variation coefficient ranged between 0 and 0.19. Expert-assigned indicator importance weight varied between 0.0040 and 0.0870. Conclusion: This study identified an indicator system with 29 nursing-sensitive quality indicators that may represent potential indicator candidates for quality assessment of pediatric oncology nursing practice in mainland China.


Subject(s)
Neoplasms , Quality Indicators, Health Care , Analytic Hierarchy Process , Child , Consensus , Delphi Technique , Humans , Prospective Studies
10.
Stud Health Technol Inform ; 284: 83-84, 2021 Dec 15.
Article in English | MEDLINE | ID: mdl-34920479

ABSTRACT

The activities/interventions performed by the nursing team and the time required for their performance have become a widely discussed topic due to their impact on the quality of patient safety and staff working conditions. Nursing Interventions Classification (NIC) was used as a more accurate indicator as it identified activities/interventions. This study analyzed the workload distribution of nursing team in a pediatric oncology center.


Subject(s)
Neoplasms , Standardized Nursing Terminology , Child , Humans , Workload
11.
Nutr Cancer ; 73(1): 83-88, 2021.
Article in English | MEDLINE | ID: mdl-32188289

ABSTRACT

Malnutrition is prevalent among pediatric oncology patients admitted to the pediatric intensive care unit (PICU), which leads to unfavorable clinical outcomes. This was a secondary data analysis of the nutrition data of 160 pediatric oncology patients admitted to the PICU. Cox's regression (adjusted for sex, age, and pediatric critical illness score) and Chi-square were used to examine the association between nutritional status and outcomes. Most of the patients were diagnosed with leukemia and admitted to PICU for medical reasons. The prevalence of malnutrition was 11.3% according to weight-for-age z-score, 16.3% according to height-for-age z-score, 21.3% according to body mass index-for-age z-score, 14.4% according to weight-for-height z-score, 34.4% according to mid-upper arm circumference-for-age z-score. Anthropometrical parameters that predicted the duration of mechanical ventilation were weight-for-age (hazard ratio [HR], 2.727; 95% confidence interval [CI], 1.729-4.302); height-for-age (HR, 1.969; 95% CI, 1.440-2.693); weight-for-height (HR, 2.645; 95% CI, 1.575-4.441); and upper arm muscle area-for-age (HR, 2.098; 95% CI, 1.430-3.077). Length of PICU stay was predicted by weight-for-age (HR, 1.207; 95% CI, 1.014-1.436). Malnutrition is prevalent among pediatric oncology patients admitted to the PICU, which lead to unfavorable clinical outcomes. Comprehensive nutritional status assessment should be performed for these children.


Subject(s)
Malnutrition , Neoplasms , Nutritional Status , Child , Humans , Infant , Intensive Care Units, Pediatric , Length of Stay , Neoplasms/diagnosis , Treatment Outcome
13.
Cancer Nurs ; 42(6): 430-438, 2019.
Article in English | MEDLINE | ID: mdl-30124482

ABSTRACT

BACKGROUND: The Pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) was developed to measure symptoms and functions of children with a variety of chronic diseases. As the Chinese version of pediatric PROMIS (C-Ped-PROMIS) measures was developed, the measurement properties of C-Ped-PROMIS have not been demonstrated. OBJECTIVE: The aim of this study was to examine the reliability, validity, and factorial structure of the C-Ped-PROMIS measures in children with cancer in China. METHODS: A total of 272 children and adolescents were recruited from 3 hospitals in China. The 8 C-Ped-PROMIS measures and Pediatric Quality of Life Inventory General Core Module and Cancer Module were administered in a cross-sectional design. Known-group validity, concurrent validity, and item and scale reliability of these 8 measures were examined by using SPSS 21.0, and factorial structures were tested by using confirmatory factor analysis with Mplus 7.1. RESULTS: All 8 C-Ped-PROMIS measures showed good known-group validity as hypothesized (P < .05) and good concurrent validity measured by significant correlations with the Pediatric Quality of Life Inventory General Core Module and Cancer Module; the correlation coefficients ranged from r = 0.519 to r = 0.655, except for peer relationship with r = 0.255 and r = 0.136, respectively. The Cronbach's α of C-Ped-PROMIS ranged from .758 to .910, and model-estimated scale reliabilities ranged from 0.740 to 0.905. The confirmatory factor analysis models of each measure fit data very well. CONCLUSIONS: All 8 C-Ped-PROMIS measures have a valid factorial structure as theoretically defined with good reliability and validity. IMPLICATIONS FOR PRACTICE: The C-Ped-PROMIS can be readily used to measure symptoms and functions of children and adolescents with cancer in China.


Subject(s)
Asian People/psychology , Chronic Disease/psychology , Neoplasms/psychology , Patient Reported Outcome Measures , Psychometrics/methods , Quality of Life/psychology , Adolescent , Child , China , Cross-Sectional Studies , Factor Analysis, Statistical , Female , Humans , Male , Reproducibility of Results , Surveys and Questionnaires , Translations
14.
JMIR Mhealth Uhealth ; 6(11): e195, 2018 Nov 19.
Article in English | MEDLINE | ID: mdl-30455166

ABSTRACT

BACKGROUND: Acute lymphoblastic leukemia (ALL) is the most common childhood malignancy. Caring for children with ALL is challenging for parents. A mobile health (mHealth) supportive care intervention was developed to meet parents' needs. OBJECTIVE: This study aims to evaluate the potential effectiveness of this mHealth supportive care intervention on emotional distress, social support, care burden, uncertainty in illness, quality of life, and knowledge. METHODS: We conducted a quasi-experimental pre- and postdesign study from June 2015 to January 2016. In total, 101 parents were enrolled in the study, with 50 in the observation group and 51 in the intervention group. Parents in the observation group received the standard health education and were observed for 3 months. Parents in the intervention group received the mHealth supportive care intervention, in addition to the standard health education. The intervention consisted of 2 parts-an Android smartphone app "Care Assistant (CA)" and a WeChat Official Account. The CA with 8 modules (Personal Information, Treatment Tracking, Family Care, Financial and Social Assistance, Knowledge Center, Self- Assessment Questionnaires, Interactive Platform, and Reminders) was the main intervention tool, whereas the WeChat Official Account was supplementary to update information and realize interaction between parents and health care providers. Data of parents' social support, anxiety, depression, care burden, uncertainty in illness, quality of life, their existing knowledge of ALL and care, and knowledge need were collected before and after the 3-month study period in both groups. For the intervention group, parents' experience of receiving the intervention was also collected through individual interviews. RESULTS: Overall, 43 parents in the observation group and 49 in the intervention group completed the study. Results found that the intervention reduced parents' anxiety (Dint(Post-Pre)=-7.0 [SD 13.1], Dobs(Post-Pre)=-0.4 [SD 15.8], t90=-2.200, P=.03) and uncertainty in illness (Dint(Post-Pre)=-25.0 [SD 8.2], Dobs(Post-Pre)=-19.8 [SD 10.1], t90=-2.761, P=.01), improved parents' social function (Dint(Post-Pre)=9.0 [SD 32.8], Dobs(Post-Pre)=-7.5 [SD 30.3], t90=2.494, P=.01), increased parents' knowledge of ALL and care (Dint(Post-Pre)=28.4 [SD 12.4], Dobs(Post-Pre)=17.2 [SD 11.9], t90=4.407, P<.001), and decreased their need for knowledge (Dint(Post-Pre)=-9.9 [SD 11.6], Dobs(Post-Pre)=-1.9 [SD 6.4], t90=-4.112, P<.001). Qualitative results showed that parents were satisfied with the intervention and their role in the caregiving process. CONCLUSIONS: The mHealth intervention in supporting parents of children with ALL is effective. This study is informative for other future studies on providing mHealth supportive care for parents of children with cancer.

15.
Eur J Pediatr ; 177(1): 7-17, 2018 Jan.
Article in English | MEDLINE | ID: mdl-29128883

ABSTRACT

Oral mucositis is one of the most frequent complications after chemotherapy, occurring in approximately 52 to 80% of children receiving treatment for cancer. Recently, it has been suggested that the use of low-energy laser could reduce the grade of oral mucositis and alleviate the symptoms. In 2014, Multinational Association of Supportive Care in Cancer/International Society of Oral Oncology has recommended low-level laser therapy in prevention of mucositis for hematopoietic stem cell transplantation patients because of its beneficial effects in majority of recent studies. However, the recommendation was made for adult patients, not pediatric patients. Data about the effect of low-level laser therapy in pediatric patients is limited. This study aims to synthesize the available clinical evidences on the effects of low-level laser therapy (LLLT) in the prevention and treatment of chemotherapy-induced oral mucositis (OM). A meta-analysis was performed using trials identified through the Cochrane Central Register of Controlled Trials, Embase, MEDLINE, Web of Science, China Biology Medicine (CBM), Wanfang Database, and China National Knowledge Infrastructure (CNKI). Data on occurrence, duration, and severity of oral mucositis were collected. All randomized controlled studies and clinical controlled studies comparing LLLT to routine qualified prevention or treatment during or after chemotherapy were critically appraised and analyzed. We found 8 qualified clinical trials with a total of 373 pediatric patients; the methodological quality was acceptable. After prophylactic LLLT, the odds ratio for developing OM was significantly lower compared with placebo(OR = 0.50, 95% CI 0.29 to 0.87, P = 0.01), the odds ratio for developing grade III OM or worse was statistically significantly lower compared with placebo (OR = 0.30, 95% CI (0.10, 0.90), P = 0.03), and the OM severity was statistically significantly lower compared with placebo (SMD = - 0.56, 95% CI (- 0.98, - 0.14), P = 0.009). For therapeutic LLLT, the OM severity was significantly reduced compared to routine care (SMD = - 1.18, 95% CI (- 1.52, - 0.84), P < 0.00001). Oral pain was also reduced after LLLT over routine care (MD = - 0.73, 95% CI (- 1.36, - 0.11), P = 0.02). CONCLUSION: Prophylactic LLLT reduces mucositis and severe mucositis and decreases the average severity of oral mucositis in pediatric and young patients with cancer. Therapeutic LLLT also reduces the average severity of oral mucositis and oral pain. Further research should investigate the optimal parameter of LLLT in pediatric and young patients, and studies with higher methodological quality should be performed. What is known: • Low-level laser therapy (LLLT) was recommended by Multinational Association of Supportive Care in Cancer/International Society of Oral Oncology; however, evidences about LLLT on oral mucositis in pediatric and young patients were insufficient and lack supportive synthesized data. • Recently, there have been several new RCTs or CCTs for pediatric patients or young adults. What is new: • Prophylactic LLLT reduces the occurrence of mucositis and severe mucositis and decreases the average severity of oral mucositis in pediatric and young patients. • Therapeutic LLLT reduces the average severity of oral mucositis and oral pain.


Subject(s)
Antineoplastic Agents/adverse effects , Low-Level Light Therapy , Stomatitis/radiotherapy , Adolescent , Child , Child, Preschool , Humans , Infant , Infant, Newborn , Severity of Illness Index , Stomatitis/chemically induced , Stomatitis/prevention & control , Treatment Outcome , Young Adult
16.
Support Care Cancer ; 25(12): 3703-3713, 2017 12.
Article in English | MEDLINE | ID: mdl-28714044

ABSTRACT

PURPOSE: Caring for children with acute lymphoblastic leukemia (ALL) is a distressing experience for parents without medical training. The experience can lead to parents' care burden. This study explored care burden among parents of children with ALL and its related factors. METHODS: A total of 130 parents were surveyed with the Zarit Burden Inventory (ZBI), Perceived Social Support Scale (PSSS), Zung's Self-rating Anxiety Scale (SAS), Zung's Self-rating Depression Scale (SDS), Medical Outcome Study Short Form 36 (SF-36), and a study specific demographic information questionnaire. Independent-samples T test, one-way ANOVA, Pearson correlation analysis and multivariate linear regression analysis (stepwise method), and binomial logistic regression were used in data analysis. RESULTS: The mean score of parents' care burden overall was 37.74 ± 16.57, 17 (13.08%) had little or no burden, 57 (43.85%) had mild-to-moderate burden, 44 (33.84%) had moderate-to-severe burden, and 12 (9.23%) had severe burden. Regression analyses indicated daily care time, anxiety, general health, average monthly family income, social support, and number of co-caregivers were factors associated with care burden. These variables accounted for 51% of the variance in care burden. Other demographic information of parents and children, depression, and other dimensions of SF-36 were not related to care burden. The severe burden level was associated the increase risk of emotional distress compared with little or no burden group (OR = 37.500, 95% CI = 4.515-311.348, P = 0.001). CONCLUSION: The results indicated that care burden in parents of children newly diagnosed with ALL is high. Parents with lower levels of care burden tend to have less daily care time, more co-caregivers, higher income, less anxiety, better general health, and social support. Strategies are needed to help reduce parents' care burden.


Subject(s)
Caregivers/psychology , Parents/psychology , Precursor Cell Lymphoblastic Leukemia-Lymphoma/therapy , Social Support , Academic Medical Centers , Adult , Child, Preschool , China , Female , Humans , Male , Surveys and Questionnaires
17.
Comput Inform Nurs ; 35(11): 590-598, 2017 Nov.
Article in English | MEDLINE | ID: mdl-28471762

ABSTRACT

Patient-reported outcomes are increasingly emphasized in clinical trials and population health studies. Our research team developed a smartphone app to track patient-reported outcomes of children with chronic diseases. The purpose of this study is to develop a patient-reported outcome reporting app and evaluate its usability. A multidisciplinary research team including health services researchers, pediatric nurses, and software engineers worked collaboratively in developing the patient-reported outcome app and administration portal. Group discussions and several rounds of feedback and modification were used. Ten pediatric patients with cancer, five parents, and two nurses participated in the usability study. We conducted content analyses in app development and usability evaluation. The app collected demographic information and patient-reported outcomes. Patient-reported outcomes were collected by Chinese versions of pediatric Patient-Reported Outcomes Measurement Information System Short Forms and Patient-Reported Outcomes Measurement Information System Parent Proxy Report Scales for Children. Pediatric patients aged 8 to 17 years and parents with a 5- to 7-year-old pediatric child used different age-appropriate questionnaires. The Web-based administration portal helped to manage demographic information, questionnaires, administrators, and survey-conducting organizations. The users liked the app. All participants felt that this app was easy to use and the interfaces were friendly to children. Nurses thought the administration portal interfaces were simple and the data were convenient to download for further analysis. We conclude that the app and its administration portal meet researchers and clinical nurses' demand and have potential to promote patient-reported outcomes in assessing quality of life and symptoms of pediatric patients.


Subject(s)
Mobile Applications/statistics & numerical data , Patient Reported Outcome Measures , Pediatrics , Smartphone , Adolescent , Adult , Child , Child, Preschool , Chronic Disease , Female , Humans , Male , Parents/education , Patient Portals/statistics & numerical data , Surveys and Questionnaires
18.
J Nurs Manag ; 25(3): 184-193, 2017 Apr.
Article in English | MEDLINE | ID: mdl-27910215

ABSTRACT

AIM: To identify stressors of newly graduated paediatric nurses at a children's hospital in Shanghai, China. BACKGROUND: Stress is an international phenomenon in nursing generally, but little is known about its effect on new paediatric nurses at the Shanghai paediatric hospital. METHOD: Participants in this research were 25 newly graduated paediatric nurses. Their behaviours and perceptions were explored by field observations and interviews. RESULTS: Findings indicated that participants experienced numerous stressors: low work status, insufficient professional competence, heavy workload, inadequate supportive systems and uncertainty of career development. CONCLUSION: The results of the present study provide useful information for administrators to develop and improve postgraduate programmes to support novice paediatric nurses. IMPLICATIONS FOR NURSING MANAGEMENT: Our research highlights the importance of identifying the stressors of new paediatric nurses in the light of a serious nurse shortage and an increasing birth rate.


Subject(s)
Attitude of Health Personnel , Nurses/psychology , Nurses/standards , Pediatric Nursing , Stress, Psychological/etiology , Adaptation, Psychological , Adult , Career Mobility , China , Clinical Competence/standards , Grounded Theory , Hospitals, Pediatric/organization & administration , Humans , Job Satisfaction , Nurses/supply & distribution , Preceptorship , Qualitative Research , Social Support , Workforce , Workload/psychology , Workload/standards
19.
J Nurs Manag ; 24(1): E87-94, 2016 Jan.
Article in English | MEDLINE | ID: mdl-25807983

ABSTRACT

AIM: To identify core competencies needed in the transition of nurse managers on the way to excellence. BACKGROUND: There is growing recognition of the importance of nurse managers in hospitals. Most managers still learn through their failures and few studies have described the perceptions of nurse managers in China. It is vital to understand what competencies Chinese nurse managers should have in order to establish suitable training programmes and improve their management skills. METHOD: A phenomenological approach that included in-depth interviews with 12 nurse managers in six Chinese hospitals was conducted. RESULTS: The transition to management included four phases: the adaptive phase, the running-in and stable phase, the stagnation phase and the maturation phase. CONCLUSION: In order to fulfil their clinical responsibilities, nurse managers need to develop multifaceted competencies, specifically in communication and stress management. Ideally, nurse managers should progress through the four phases mentioned above to achieve excellence. IMPLICATIONS: There is a requirement for utilising various methods for nurse managers in adapting new roles, improving communication and relieving stress.


Subject(s)
Clinical Competence/standards , Leadership , Nurse Administrators/standards , Self Efficacy , Adult , China , Female , Humans , Nurse Administrators/psychology , Perception , Qualitative Research
20.
J Pediatr Nurs ; 30(1): 160-73, 2015.
Article in English | MEDLINE | ID: mdl-25450446

ABSTRACT

This study was designed to determine the key predictors for each aspect of family management of families with children who have chronic conditions in China. The participants included 399 caregivers whose children have chronic illnesses. We used the following instruments: Child Behavior Checklist; Feetham Family Functioning Survey; and Family Management Measures. The final modes of the hierarchical regression explained 29-48% of the variance in aspects of family management. More family support should be provided for those with low family income, children with renal and genetic disorders and rheumatic diseases and those living in rural areas. Child and family functioning affects family management.


Subject(s)
Caregivers/psychology , Chronic Disease/nursing , Family Nursing/organization & administration , Family Relations/psychology , Adaptation, Psychological , Adult , Caregivers/statistics & numerical data , Checklist , Child , Child, Preschool , China , Disease Management , Female , Humans , Long-Term Care/methods , Longitudinal Studies , Male , Risk Factors , Sampling Studies
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