@Article{info:doi/10.2196/65198,
author="Luo, Jessica
and West, C. Nicholas
and Pang, Samantha
and Robillard, M. Julie
and Page, Patricia
and Chadha, K. Neil
and Gan, Heng
and Correll, R. Lynnie
and Ridgway, Randa
and Broemling, Natasha
and G{\"o}rges, Matthias
and ",
title="Parental Perspectives on Pediatric Surgical Recovery: Narrative Analysis of Free-Text Comments From a Postoperative Survey",
journal="JMIR Perioper Med",
year="2024",
month="Dec",
day="20",
volume="7",
pages="e65198",
keywords="narrative analysis",
keywords="qualitative data",
keywords="family feedback",
keywords="narrative feedback",
keywords="pediatric surgery",
keywords="perioperative care",
keywords="pain management",
keywords="surgical recovery",
abstract="Background: Qualitative experience data can inform health care providers how to best support families during pediatric postoperative recovery. Patient experience data can also provide actionable information to guide health care quality improvement; positive feedback can confirm the efficacy of current practices and systems, while negative comments can identify areas for improvement. Objective: This study aimed to understand families' perspectives regarding their children's surgical recovery using qualitative patient experience data (free-text comments) from a prospective cohort study conducted within a larger study developing a postoperative-outcome risk stratification model. Methods: Participants were parents or guardians of children aged 0-18 years who underwent surgery at a pediatric tertiary care facility; children undergoing either outpatient or inpatient procedures were eligible to be enrolled. Participants with English as a second language were offered translational services during the consent process and were included if any family member could translate the surveys into their preferred language. Participants were ineligible if they and their families could not understand English or the child had a neurodevelopmental disability. Perioperative data were collected from families using web-based surveys, including 1 preoperative survey and follow-up surveys sent on postoperative days 1, 2, 3, 7, 15, 30, and 90. Surveys were completed until the family indicated the child was fully recovered or until postoperative day 90 was reached. Follow-up surveys included opportunities to leave free-text comments on the child's surgical experience. Results: In total, 91\% (453/500) of enrolled families completed at least 1 postoperative survey; 53\% (242/453) provided at least 1 free-text comment and were included in the presented analysis, based on a total of 485 comments. The patient's age distribution was bimodal (modes at 2-3 and 14-15 years), with 66\% (160/242) being male. Patients underwent orthopedic (60/242, 25\%), urological (39/242, 16\%), general (36/242,15\%), otolaryngological (31/242, 13\%), ophthalmological (32/242, 13\%), dental (27/242, 11\%), and plastic (17/242, 7\%) surgeries. Largely positive comments (398/485, 82\%) were made on the recovery and clinical care experience. A key theme for improvement included ``communication,'' with subthemes highlighting parental concerns regarding the ``preoperative discussions,'' ``clarity of discharge instructions,'' and ``continuity of care.'' Other themes included ``length of stay'' and ``recovery experience.'' Feedback also suggested survey design amendments for future iterations of this instrument. Conclusions: Collecting parental recovery feedback is feasible and valued by families. Findings underscored the significance of enhancing communication strategies between health care providers and parents to align expectations and support proactive family-centered care. Our postoperative surveys allowed families to provide actionable suggestions for improving their experience, which may not have been considered during their hospital encounter. Our longitudinal survey protocol may be expanded to support continuous quality improvement initiatives involving near-real-time patient feedback to improve the health care experience of patients and families. ",
doi="10.2196/65198",
url="https://periop.jmir.org/2024/1/e65198"
}


@Article{info:doi/10.2196/63946,
author="Nakamura, Kanako
and Hamada, Yuko
and Fujita, Ayaka
and Morokuma, Seiichi",
title="Factors That Affect the Quality of Life of Mothers Caring for Children With Medical Needs at Home: Cross-Sectional Questionnaire Study",
journal="Asian Pac Isl Nurs J",
year="2024",
month="Dec",
day="18",
volume="8",
pages="e63946",
keywords="home care",
keywords="children with special health care needs",
keywords="children with medical complexity",
keywords="mother",
keywords="quality of life",
keywords="caregiver",
keywords="questionnaire",
abstract="Background: The number of children requiring daily medical care is on the rise, with many being cared for at home. This situation places a significant burden on mothers, who often serve as the primary caregivers. Objective: This study aimed to clarify the factors that affect the quality of life of mothers with children who require home health care. Methods: A questionnaire study was conducted among mothers of children needing medical care at home, with 46 participants responding. The questionnaire included items regarding the child's condition, the mother's situation, and the World Health Organization Quality of Life-26scale. Results: Factors influencing the quality of life of mothers included whether the child attended daycare or school ($\beta$=.274; P=.04), the duration of home care ($\beta$=.305; P=.02), and the presence or absence of position changes ($\beta$=--.410; P=.003). The presence or absence of position changes had the most significant impact (adjusted R2=.327). Conclusions: The most significant factor affecting the quality of life of mothers of children requiring home medical care is the presence or absence of positional changes. ",
doi="10.2196/63946",
url="https://apinj.jmir.org/2024/1/e63946"
}










@Article{info:doi/10.2196/24808,
author="Lecomte, Fabienne
and Thecua, Elise
and Ziane, Laurine
and Deleporte, Pascal
and Duhamel, Alain
and Vamour, Cl{\'e}mence
and Mordon, Serge
and Rakza, Thameur",
title="Phototherapy Using a Light-Emitting Fabric (BUBOLight) Device in the Treatment of Newborn Jaundice: Protocol for an Interventional Feasibility and Safety Study",
journal="JMIR Res Protoc",
year="2021",
month="May",
day="25",
volume="10",
number="5",
pages="e24808",
keywords="jaundice",
keywords="light emitting fabrics",
keywords="light",
keywords="neonate",
keywords="newborn jaundice",
keywords="perinatal",
keywords="phototherapy",
abstract="Background: Neonatal jaundice is a common condition occurring in 60\%-80\% of all healthy-term and late-preterm neonates. In the majority of cases, neonatal jaundice resolves spontaneously and causes no harm; however, in some neonates, signi?cant hyperbilirubinemia can develop and lead to kernicterus jaundice, a serious neurological disease. Phototherapy (PT) is the preferred treatment for jaundice; however, to be effective, PT devices need to have a broad light emission surface to generate no or little heat and to provide an optimal wavelength and light intensity (420-490 nm and ?30 {\textmu}W/cm{\texttwosuperior}/nm, respectively). Objective: This study aimed to investigate the feasibility, safety, and level of satisfaction of parents and health care teams with the BUBOlight device, an innovative alternative to conventional hospital PT, in which luminous textiles have been incorporated in a sleeping bag. Methods: This interventional, exploratory, simple group, nonrandomized, single-center trial will be conducted at Lille Hospital. In total, 10-15 neonates and their parents will be included to obtain evaluable data from 10 parent-neonate pairs. Neonates weighing more than 2500 g at birth and born with ?37 weeks of amenorrhea that required PT in accordance with the guidelines of the National Institute For Health and Clinical Excellence will receive one 4-hour session of illumination. Total serum bilirubin and transcutaneous bilirubin levels were obtained at the start and 2 hours after the end of PT. Cutaneous and rectal temperatures, heart rate, and oxygen saturation will be measured at the beginning and during PT. The number of subjects is therefore not calculated on the basis of statistical assumptions. We aim to obtain a minimum proportion of 90\% (ie, 9 of 10) of the neonates included, who have been able to undergo 4-hour PT without unacceptable and unexpected toxicities. We will calculate the mean, median, quartiles, minimum and maximum values of the quantitative parameters, and the frequency of the qualitative parameters. The rate of patients with no unacceptable and unexpected toxicities (ie, the primary endpoint) will be calculated. Results: The first patient is expected to be enrolled at the end of 2020, and clinical investigations are intended for up to June 2021. The final results of this study are expected to be available at the end of 2021. Conclusions: Our findings will provide insights into the safety and feasibility of a new PT device based on light-emitting fabrics for the treatment of newborn jaundice. This new system, if proven effective, will improve the humanization of neonatal care and help avoid mother-child separation. Trial Registration: ClinicalTrials.gov NCT04365998; https://clinicaltrials.gov/ct2/show/NCT04365998 International Registered Report Identifier (IRRID): PRR1-10.2196/24808 ",
doi="10.2196/24808",
url="https://www.researchprotocols.org/2021/5/e24808",
url="http://www.ncbi.nlm.nih.gov/pubmed/34032584"
}