Strengths and weaknesses of parent–staff communication in the NICU: a survey assessment

BACKGROUND: Parents of infants hospitalized in the neonatal intensive care unit (NICU) find themselves in a situation of emotional strain. Communication in the NICU presents special challenges due to parental stress and the complexity of the highly technologized environment. Parents’ need for communication may not always be met by the NICU staff. This study aimed to describe strengths and weaknesses of parent–nurse and parent–doctor communication in a large level III NICU in Sweden in order to improve our understanding of parents’ communication needs. METHODS: Parents were asked to complete a survey consisting of sixteen questions about their experiences of communication with nurses and doctors in the NICU. In each question the parents evaluated some aspect of communication on a five- or six-point Likert scale. They also had the opportunity on each question to comment on their experiences in their own words. Data were analyzed using IBM SPSS Statistics 20.0 and qualitative manifest content analysis. RESULTS: 270 parents (71.4%) completed the survey. Parents generally rated communication with the staff in the NICU positively and appreciated having received emotional support and regular information about their child´s care. Although a large majority of the parents were satisfied with their communication with doctors and nurses, only about half of the parents felt the nurses and doctors understood their emotional situation very well. Some parents would have desired easier access to conversations with doctors and wanted medical information to be given directly by doctors rather than by nurses. Parents’ communication with the staff was hampered when many different nurses were involved in caring for the infant or when the transfer of information in connection with shift changes or between the maternity ward and NICU was poor. Parents also desired to be present during doctors’ rounds on their infant. CONCLUSIONS: Training both doctors and nurses in communication skills, especially in how to meet parents’ emotional needs better, could make communication at the NICU more effective and improve parental well-being. Creating a framework for the parents of what to expect from NICU communication might also be helpful. In addition, our results support the use of primary nurse teams to improve continuity of care and thereby promote successful communication

A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research:Advancing Knowledge and Offering New Perspectives to the Field

Introduction Patient-reported outcome measures (PROMs) can be employed in both research and clinical care to enhance our understanding of outcomes that matter to patients. This narrative review aims to describe PROM use in recent pediatric surgical research, identify and describe psychometrically robust PROMs, providing an overview of those derived from pediatric patient input, and make recommendations for future research. Materials and Methods A search was conducted to identify articles published from 2021 to August 2023 describing the availability and/or use of at least one valid or reliable PROM in children with conditions including anorectal malformations, biliary atresia, congenital diaphragmatic hernia, duodenal atresia, esophageal atresia, abdominal wall defects, Hirschsprung's disease, sacrococcygeal teratoma, and short bowel syndrome. Articles were categorized based on their objectives in applying PROMs. Psychometrically robust PROMs were identified and described. Results Out of the 345 articles identified, 49 met the inclusion criteria. Seventeen focused on esophageal atresia and 14 on Hirschsprung's disease. Twenty-nine PROMs were identified, with 12 deemed psychometrically robust. Seven psychometrically robust PROMs were developed using patient input in the primary item generation. Most PROMs were applied to advance understanding of conditions and/or treatment and fewer were developed or psychometrically evaluated. No PROMs were assessed for their impact or incorporated into an implementation study. Conclusions This review reveals gaps in the application of PROMs in recent pediatric surgical research. Emphasis should be placed on the development and utilization of psychometrically robust PROMs, broadening the scope of covered diseases, conducting impact assessments, and evaluating implementation strategies

A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research:Advancing Knowledge and Offering New Perspectives to the Field

Introduction Patient-reported outcome measures (PROMs) can be employed in both research and clinical care to enhance our understanding of outcomes that matter to patients. This narrative review aims to describe PROM use in recent pediatric surgical research, identify and describe psychometrically robust PROMs, providing an overview of those derived from pediatric patient input, and make recommendations for future research. Materials and Methods A search was conducted to identify articles published from 2021 to August 2023 describing the availability and/or use of at least one valid or reliable PROM in children with conditions including anorectal malformations, biliary atresia, congenital diaphragmatic hernia, duodenal atresia, esophageal atresia, abdominal wall defects, Hirschsprung's disease, sacrococcygeal teratoma, and short bowel syndrome. Articles were categorized based on their objectives in applying PROMs. Psychometrically robust PROMs were identified and described. Results Out of the 345 articles identified, 49 met the inclusion criteria. Seventeen focused on esophageal atresia and 14 on Hirschsprung's disease. Twenty-nine PROMs were identified, with 12 deemed psychometrically robust. Seven psychometrically robust PROMs were developed using patient input in the primary item generation. Most PROMs were applied to advance understanding of conditions and/or treatment and fewer were developed or psychometrically evaluated. No PROMs were assessed for their impact or incorporated into an implementation study. Conclusions This review reveals gaps in the application of PROMs in recent pediatric surgical research. Emphasis should be placed on the development and utilization of psychometrically robust PROMs, broadening the scope of covered diseases, conducting impact assessments, and evaluating implementation strategies

Navigating global collaboration:challenges faced by the international network on esophageal atresia

The International Network on Esophageal Atresia (INoEA) stands as a beacon of collaboration in addressing the complexities of this congenital condition on a global scale. The eleven board members, from various countries (USA, Canada, France, Australia, Italy, Sweden, Germany, and The Netherlands) and backgrounds (pediatric gastroenterology, pediatric surgery, pediatric pulmonology, nursing, and parents) met in a face-to-face symposium in Lille in November 2023, to identify challenges and solutions for improving global collaboration of the network.</p

Fostering continuous quality improvement in a European rare disease network

BackgroundThe European Reference Network for rare Inherited Congenital Anomalies (ERNICA) is a clinical network dedicated to improving the quality of care for patients with rare and complex digestive and gastrointestinal diseases, many of whom require surgery in early life. The network brings together clinicians, researchers and patient representatives from 22 countries in Europe. By pooling expertise, ERNICA is able to facilitate improvement initiatives that may not otherwise be possible. However, describing the desired quality of care and transferring it to local practice remains a challenge, complicated by our low-prevalence patient population, multidisciplinary clinical involvement and heterogeneous European context. In an attempt to mitigate these challenges, and foster a system of continuous quality improvement, we present the “ERNICA quality cycle”.Main bodyThe ERNICA quality cycle is comprised of five steps: (1) Describing the desired quality of care (2) Promoting guideline implementation (3) Measuring quality of care (4) Evaluating clinical practice (5) Conducting research. It offers a structured, continuous and collaborative approach to the improvement of care for patients with rare and complex digestive and gastrointestinal diseases. Evaluating the approach, through qualitative process evaluation, will be critical to capturing learning points.ConclusionsThe ERNICA quality cycle holds tremendous potential for improving the quality of care for patients with rare and complex conditions, both within ERNICA and for other European Reference Networks

Att vara mamma och sjuk i bröstcancer

Bröstcancersjukdomen drabbar årligen många kvinnor. I Sverige under år 2006 diagnostiserades 2819 kvinnor mellan 20-59 år med bröstcancer, en ålder då många är föräldrar med hemmaboende barn. Bröstcancer är en livshotande sjukdom och att drabbas av sjukdomen kan innebära att livet förändras fysiskt, psykologiskt, existentiellt och socialt. Tidigare forskning visar att också pappan och barnet i familjen till kvinnan med bröstcancer påverkas av sjukdomen. Omvårdnadens fokus är både individen och familjen. Sjuksköterskans uppgift är att vårda människor ur ett helhetsperspektiv, där även den sociala människan ska bemötas. Detta arbete är en litteraturstudie baserad på elva vetenskapliga artiklar med publiceringsår mellan 2000-2008. Litteraturstudiens syfte var att beskriva kvinnans erfarenhet av att vara mamma med hemmaboende barn under bröstcancersjukdom och behandling. Bearbetningen av artiklarna utfördes enligt Granheim och Lundmans modell för latent innehållsanalys. Resultatet visade att mammor efter bröstcancerdiagnosen mötte en ny tillvaro där de blev tvungna att försöka hitta en balans mellan att samtidigt vara mamma och en sjuk kvinna. På vägen genom sjukdomsprocessen erfor mammorna förlust av energi, delar av rollen som mamma samt tid med barnet. Flera studier visade på att mammor såg sitt barn reagera på sjukdomen samt deras behov att skydda sitt barn från sjukdomen. Mammorna upplevde att de behövde hjälp av professionella som kunde bemöta dem i egenskap av att vara mamma och sjuk. Under sjukdomsprocessen beskrev mammor med bröstcancer påfrestande upplevelser men även att det var möjligt för dem att finna ny meningsfullhet i mor-barnrelationen. Resultatet belyste vikten av att sjuksköterskan konkretiserar riktlinjerna för hur hälso-och sjukvården ska agera gentemot patienten. Vård ska bedrivas utifrån vetenskap och beprövad erfarenhet, i samråd och med respekt gentemot patienten. Sjuksköterskan kan exempelvis möta upp mamman, barnet och pappan och skapa delaktighet utifrån familjens önskemål samt hjälpa dem i kommunikationen omkring sjukdomen. I samtal kan sjuksköterskan låta mamman bearbeta sin livssituation och hänvisa till rätt vårdnivå för vidare hjälp om så behövs. De slutsatser som kunde dras var att bröstcancersjukdomen var en stor utmaning för mamman och hela familjen. Samtidigt som mammans förmåga att ta hand om barnet kunde avta under behandlingstiden, verkade barnets behov av mamman öka. Sjukdomserfarenheten kunde ge mamman möjlighet till omvärdering av livet och finna ny mening, en process i vilken vårdpersonal skulle kunna bistå mammor med bröstcancer.Sjuksköterskeprogrammet, 180 högskolepoäng Omvårdnad – Eget arbete/OM2240/SPN1

Mortality from gastrointestinal congenital anomalies at 264 hospitals in 74 low-income, middle-income, and high-income countries: a multicentre, international, prospective cohort study

Summary Background Congenital anomalies are the fifth leading cause of mortality in children younger than 5 years globally. Many gastrointestinal congenital anomalies are fatal without timely access to neonatal surgical care, but few studies have been done on these conditions in low-income and middle-income countries (LMICs). We compared outcomes of the seven most common gastrointestinal congenital anomalies in low-income, middle-income, and high-income countries globally, and identified factors associated with mortality. Methods We did a multicentre, international prospective cohort study of patients younger than 16 years, presenting to hospital for the first time with oesophageal atresia, congenital diaphragmatic hernia, intestinal atresia, gastroschisis, exomphalos, anorectal malformation, and Hirschsprung’s disease. Recruitment was of consecutive patients for a minimum of 1 month between October, 2018, and April, 2019. We collected data on patient demographics, clinical status, interventions, and outcomes using the REDCap platform. Patients were followed up for 30 days after primary intervention, or 30 days after admission if they did not receive an intervention. The primary outcome was all-cause, in-hospital mortality for all conditions combined and each condition individually, stratified by country income status. We did a complete case analysis. Findings We included 3849 patients with 3975 study conditions (560 with oesophageal atresia, 448 with congenital diaphragmatic hernia, 681 with intestinal atresia, 453 with gastroschisis, 325 with exomphalos, 991 with anorectal malformation, and 517 with Hirschsprung’s disease) from 264 hospitals (89 in high-income countries, 166 in middleincome countries, and nine in low-income countries) in 74 countries. Of the 3849 patients, 2231 (58·0%) were male. Median gestational age at birth was 38 weeks (IQR 36–39) and median bodyweight at presentation was 2·8 kg (2·3–3·3). Mortality among all patients was 37 (39·8%) of 93 in low-income countries, 583 (20·4%) of 2860 in middle-income countries, and 50 (5·6%) of 896 in high-income countries (p<0·0001 between all country income groups). Gastroschisis had the greatest difference in mortality between country income strata (nine [90·0%] of ten in lowincome countries, 97 [31·9%] of 304 in middle-income countries, and two [1·4%] of 139 in high-income countries; p≤0·0001 between all country income groups). Factors significantly associated with higher mortality for all patients combined included country income status (low-income vs high-income countries, risk ratio 2·78 [95% CI 1·88–4·11], p<0·0001; middle-income vs high-income countries, 2·11 [1·59–2·79], p<0·0001), sepsis at presentation (1·20 [1·04–1·40], p=0·016), higher American Society of Anesthesiologists (ASA) score at primary intervention (ASA 4–5 vs ASA 1–2, 1·82 [1·40–2·35], p<0·0001; ASA 3 vs ASA 1–2, 1·58, [1·30–1·92], p<0·0001]), surgical safety checklist not used (1·39 [1·02–1·90], p=0·035), and ventilation or parenteral nutrition unavailable when needed (ventilation 1·96, [1·41–2·71], p=0·0001; parenteral nutrition 1·35, [1·05–1·74], p=0·018). Administration of parenteral nutrition (0·61, [0·47–0·79], p=0·0002) and use of a peripherally inserted central catheter (0·65 [0·50–0·86], p=0·0024) or percutaneous central line (0·69 [0·48–1·00], p=0·049) were associated with lower mortality. Interpretation Unacceptable differences in mortality exist for gastrointestinal congenital anomalies between lowincome, middle-income, and high-income countries. Improving access to quality neonatal surgical care in LMICs will be vital to achieve Sustainable Development Goal 3.2 of ending preventable deaths in neonates and children younger than 5 years by 2030

Patient-reported outcomes in children and adolescents born with esophageal atresia - condition-specific aspects of health-related quality of life and coping

Background: Survival rates in children with esophageal atresia (EA) have reached 90-95%, but they are at risk of chronic morbidity, mainly related to esophageal and respiratory dysfunction. Knowledge of condition-specific health-related quality of life (HRQOL) and coping is needed in order to properly understand the impact of the disease and treatment in the child’s daily life. Aim: The aim was to advance knowledge of condition-specific aspects of HRQOL and coping among children and adolescents with EA, including to develop and establish the field test version of a condition-specific HRQOL questionnaire for children with EA. Methods: The study design followed international guidelines for the development of a patient-reported outcome measure. A systematic literature review of HRQOL in patients with EA was conducted in Pubmed, Cinahl, and PsycINFO, from inception to January 2015. Ten standardized focus groups with 30 Swedish families of EA children 2–17 years old were held to capture the child and parent perspectives of HRQOL and coping. The reported experiences were content analyzed. The HRQOL experiences were used for item generation of pilot questionnaires which, after translation from Swedish to German, were offered to a cross-cultural sample of 89 families of EA children 2–17 years old. Predefined psychometric criteria were used in the pilot test in order to eliminate or revise poor items for the field test questionnaire. The shortened questionnaires were analyzed for internal reliability and convergent and known-groups validity. Results: Twelve studies (published 1995-2014) were included in the literature review. Five articles (published 2003–2014) described HRQOL among EA children. The studies had employed four different HRQOL questionnaires, and HRQOL results were heterogeneously reported. A standardized condition-specific HRQOL questionnaire for children with EA was needed. Thirty families of children with EA (18 children 8–17 years old, 32 parents of children 2–17 years old) participated in the focus groups (response rate 100%) and produced 1371 HRQOL statements, which formed the basis of two age-specific versions of pilot questionnaires. The 30-item pilot questionnaire for children aged 2–7 years was completed by 34 families (parent report), and the 50-item pilot questionnaire for children aged 8–17 years was completed by 52 families (51 child-report, 52 parent-report) from Sweden and Germany, with a response rate of 96% in the total sample. After omitting poorly performing items, the field test questionnaire for children aged 2–7 years (parent report) consisted of 18 items and three domains (Eating, Physical health & treatment, and Social isolation & stress), and the field test questionnaire for children 8–17 years old consisted of 26 items with four domains (Eating, Social relationships, Body perception, and Health & well-being). The initial reliability and validity of the shortened questionnaires were adequate. The focus groups also generated 590 coping statements, which revealed nine different coping strategies (Problem solving, Avoidance, Confronting, Recognizing responsibility, Seeking social support, Positive reappraisal, Emotional expression, Acceptance, Distancing) that were used in nine situational contexts. The majority of coping experiences (68.6%) were described by children with severe EA and by their parents. Conclusions: Following the need for advancement in the field, the perspectives of children with EA and their parents have been incorporated into the field test version of the first condition-specific HRQOL questionnaire for EA children.The foremost HRQOL issues are related to eating, physical health and social dimensions; in children 8–17 years old, body perception issues are also prominent. Condition-specific coping strategies seem to be adopted at an early age and may affect HRQOL. The findings shed light on issues of relevance for follow-up routine care, and can improve the evaluation of pediatric surgical care and treatment. Future research is warranted

Patient-reported outcomes in children and adolescents born with esophageal atresia

Background: Survival rates in children with esophageal atresia (EA) have reached 90-95%, but they are at risk of chronic morbidity, mainly related to esophageal and respiratory dysfunction. Knowledge of condition-specific health-related quality of life (HRQOL) and coping is needed in order to properly understand the impact of the disease and treatment in the child’s daily life. Aim: The aim was to advance knowledge of condition-specific aspects of HRQOL and coping among children and adolescents with EA, including to develop and establish the field test version of a condition-specific HRQOL questionnaire for children with EA. Methods: The study design followed international guidelines for the development of a patient-reported outcome measure. A systematic literature review of HRQOL in patients with EA was conducted in Pubmed, Cinahl, and PsycINFO, from inception to January 2015. Ten standardized focus groups with 30 Swedish families of EA children 2–17 years old were held to capture the child and parent perspectives of HRQOL and coping. The reported experiences were content analyzed. The HRQOL experiences were used for item generation of pilot questionnaires which, after translation from Swedish to German, were offered to a cross-cultural sample of 89 families of EA children 2–17 years old. Predefined psychometric criteria were used in the pilot test in order to eliminate or revise poor items for the field test questionnaire. The shortened questionnaires were analyzed for internal reliability and convergent and known-groups validity. Results: Twelve studies (published 1995-2014) were included in the literature review. Five articles (published 2003–2014) described HRQOL among EA children. The studies had employed four different HRQOL questionnaires, and HRQOL results were heterogeneously reported. A standardized condition-specific HRQOL questionnaire for children with EA was needed. Thirty families of children with EA (18 children 8–17 years old, 32 parents of children 2–17 years old) participated in the focus groups (response rate 100%) and produced 1371 HRQOL statements, which formed the basis of two age-specific versions of pilot questionnaires. The 30-item pilot questionnaire for children aged 2–7 years was completed by 34 families (parent report), and the 50-item pilot questionnaire for children aged 8–17 years was completed by 52 families (51 child-report, 52 parent-report) from Sweden and Germany, with a response rate of 96% in the total sample. After omitting poorly performing items, the field test questionnaire for children aged 2–7 years (parent report) consisted of 18 items and three domains (Eating, Physical health & treatment, and Social isolation & stress), and the field test questionnaire for children 8–17 years old consisted of 26 items with four domains (Eating, Social relationships, Body perception, and Health & well-being). The initial reliability and validity of the shortened questionnaires were adequate. The focus groups also generated 590 coping statements, which revealed nine different coping strategies (Problem solving, Avoidance, Confronting, Recognizing responsibility, Seeking social support, Positive reappraisal, Emotional expression, Acceptance, Distancing) that were used in nine situational contexts. The majority of coping experiences (68.6%) were described by children with severe EA and by their parents. Conclusions: Following the need for advancement in the field, the perspectives of children with EA and their parents have been incorporated into the field test version of the first condition-specific HRQOL questionnaire for EA children.The foremost HRQOL issues are related to eating, physical health and social dimensions; in children 8–17 years old, body perception issues are also prominent. Condition-specific coping strategies seem to be adopted at an early age and may affect HRQOL. The findings shed light on issues of relevance for follow-up routine care, and can improve the evaluation of pediatric surgical care and treatment. Future research is warrante

Parent-child assessment of Strengths and difficulties of German children and adolescents born with esophageal atresia

Introduction/Aim: Children and adolescents with a chronic somatic disease have a higher risk of developing psychological disorders than healthy peers. Therefore, we aim to investigate internalizing and behavioral problems in pediatric patients with esophageal atresia (EA) and compare this sample with German reference values using both childrens' self-reports and parents' proxy reports. Methods: The present cross-sectional study is part of the German-Swedish EA-QOL study developing a condition-specific instrument to assess Health-related Quality of Life in children and adolescents born with EA from both self and proxy perspectives. The current analyses use data from the German sample collected within the field test phase. Participants were enrolled from the Medical School Hannover and “Auf der Bult” Children's Hospital, Hannover. The cooperating clinicians provided the medical records while socio-demographic information was collected through the parent-report within the questionnaires. We used the Strengths and Difficulties Questionnaire (SDQ) to measure internalizing and behavioral problems of children and adolescents born with EA ranging from 2 to 18 years. Results: A total of 51 families participated in the field test phase. Eighty-eight parent reports and 22 child reports were included in the analyses. While the parents' perspective from the SDQ leads to a higher percentage of abnormal or borderline behavior, there is no difference to the reference group from the children's perspective. Conclusion: Incorporating routine psychological assessment into pediatric health care can help improve understanding of the burden of illness, examine treatment outcomes, assess the quality of care, and tailor interventions to meet patient and parent needs. Involving the whole family can help develop appropriate and functional coping strategies. From our point of view, it is necessary to address parental needs and concerns as well in order to provide the best possible holistic development in the family system. The family is the basis for the children's successful development, especially for children with special health care needs.PeerReviewe