External barriers for including parents of preterm infants in a randomised clinical trial in the neonatal intensive care unit in Sweden: A descriptive study

© Author(s) (or their employer(s)) 2020. Objectives Performing randomised controlled trials (RCTs) in neonatal intensive care is challenging in many ways. While restrictive inclusion criteria or busy study protocols are obvious barriers, external barriers leading to termination of a study are seldom discussed. The aim of this study was to describe barriers for inclusion of families in neonatal intensive care in an RCT aiming to evaluate the effects of continuous skin-to-skin contact on mood and sleep quality in parents of preterm infants, as well as the quality of parent-infant interaction and salivary cortisol concentrations at the time of discharge. Design A descriptive study. Setting Three out of seven tertiary neonatal intensive care units in Sweden participated in a two-arm RCT that was terminated because of low inclusion rate. Participants Before termination of the study, 11 out of 242 families assessed for eligibility were included for participation. Results The major barriers for inclusion in this RCT were external due to (1) lack of intensive care beds in the neonatal ward, causing medically stable infants to be transferred back to the referring hospital quicker than expected, (2) moving directly from the delivery room to a family room without passing an open bay intensive care room or (3) transferring from one neonatal ward to another with the same care level to increase availability of intensive care beds where needed. Other barriers were the inclusion criteria \u27single-birth\u27 and \u27Swedish-speaking parent\u27. Conclusions The major barriers for including participants were external constituted by transferals between neonatal wards and cities due to lack of intensive care beds. This is a multifactorial issue related to organisational structures. However, since this affects the possibilities to perform research this study highlights some suggestions to consider when planning prospective intervention studies within a neonatal setting. Trial registration number NCT03004677

Effect of skin-to-skin contact on parents\u27 sleep quality, mood, parent-infant interaction and cortisol concentrations in neonatal care units: Study protocol of a randomised controlled trial

INTRODUCTION: Separation after preterm birth is a major stressor for infants and parents. Skin-to-skin contact (SSC) is a method of care suitable to use in the neonatal intensive care unit (NICU) to minimise separation between parents and infants. Less separation leads to increased possibilities for parent-infant interaction, provided that the parents\u27 sleep quality is satisfactory. We aimed to evaluate the effect of continuous SSC on sleep quality and mood in parents of preterm infants borndischarge. METHODS AND ANALYSIS: A randomised intervention study with two arms-intervention versus standard care. Data will be collected from 50 families. Eligible families will be randomly allocated to intervention or standard care when transferred from the intensive care room to the family-room in the NICU. The intervention consists of continuous SSC for four consecutive days and nights in the family-room. Data will be collected every day during the intervention and again at the time of discharge from the hospital. Outcome measures comprise activity tracker (Actigraph); validated self-rated questionnaires concerning sleep, mood and bonding; observed scorings of parental sensitivity and emotional availability and salivary cortisol. Data will be analysed with pairwise, repeated measures, Mann Whitney U-test will be used to compare groups and analysis of variance will be used to adjust for different hospitals and parents\u27 gender. ETHICS AND DISSEMINATION: The study is approved by the Regional Research Ethics Board at an appropriate university (2016/89-31). The results will be published in scientific journals. We will also use conferences and social media to disseminate our findings. TRIAL REGISTRATION NUMBER: NCT03004677

What about the parents? : Sleep quality, mood, saliva cortisol response and sense of coherence in parents with a child admitted to pediatric care

Parents experience many stressful situations when their child is ill and needs medical care, irrespective of the child’s age, diagnosis or the severity of the illness. Poor sleep quality and negative mood decrease the parents’ ability to sustain attention and focus, to care for their ill child, and to cope with the challenges they face. The overall aim of this thesis was to evaluate sleep, mood, cortisol response, and sense of coherence (SOC) in parents caring for children in need of medical care, and to identify factors that may influence parents’ sleep. This thesis includes four original studies; two of these are quantitative, prospective, descriptive and comparative studies including parents (n=82) accommodated in six pediatric wards with their ill child, using questionnaires and sleep logs to measure sleep, mood and SOC, and saliva cortisol to measure cortisol response. A follow-up was performed four weeks later at home, after hospital discharge. The other two studies are qualitative, inductive and explorative interview studies, including parents (n=12) staying overnight with their preterm and/or ill infant in three neonatal intensive care units, and parents (n=15) with a child receiving hospital-based home care in two pediatric outpatient clinics. The interviews were analyzed with a phenomenographic method. Being together with one’s family seems beneficial for sleep and may decrease stress. The ability to stay with the child, in the hospital or at home, was highly appreciated by the parents. When caring for a child with illness, parents’ sleep quality was sufficient in the hospital; however, sleep quality improved further (p&lt;0.05) at home after discharge. The parents reported frequent nocturnal awakenings in the hospital caused by the child, medical treatment and hospital staff. Concern and anxiety about the child’s health, and uncertainty about the future were stressors affecting the parents’ sleep and mood negatively. The parents had lower (p=0.01) morning awakening cortisol levels in the pediatric ward compared to at home, and parents accommodated for more than one night had lower (p&lt;0.05) post-awakening cortisol levels compared to parents staying their first night. The findings of this thesis conclude that being together as a family is important for the parents’ sleep. The ability to be accommodated in the hospital and gather the family around the child may have given the parents time for relaxation and recovery, that in turn may lead to a less stressful hospital stay. When it is beneficial for the child, the whole family should be included in the pediatric care. Moreover, pediatric nurses must acknowledge parents’ sleep, in hospital and at home. Medical treatment and care at night should be scheduled and sleep promoted for the parents in order to maintain health and well-being in the family.The electronic version of the thesis is a corrected version of the printed thesis.This thesis has also been funded by Barnklinikens 60-årsfond, Filip SchelinsStiftelse, Riksföreningen för barnsjuksköterskor and Synskadades Riksförbund (Lyckopenningen).</p

Data for: “To cope with everyday life, I need to sleep” - Parents’ perceptions of sleep when they have small children with atopic dermatitis (AD)

Quotations in original language (Swedish) and after translation to EnglishTHIS DATASET IS ARCHIVED AT DANS/EASY, BUT NOT ACCESSIBLE HERE. TO VIEW A LIST OF FILES AND ACCESS THE FILES IN THIS DATASET CLICK ON THE DOI-LINK ABOV

Supporting girls with painful menstruation - A qualitative study with school nurses in Sweden

Background: Painful menstruation is common among girls. To optimize school nurses' work more knowledgeabout their experiences of supporting these girls is needed. The aim of this study was to describe school nurses'experiences of supporting girls with menstrual pain.Methods: Interviews were conducted with 15 school nurses in Sweden and analyzed using thematic analysis.Results: Three themes emerged: Taking menstrual pain seriously, Being a disseminator of knowledge, andExternal conditions for conducting professional work as a school nurse.Conclusion: School nurses felt competent in supporting girls with menstrual pain. However, they lacked struc-tural, written guidelines and routines for how to treat, support, follow-up and refer girls with menstrual pain.Practice implications: School education about menstruation and sexual health needs to be strengthened. Cooper-ation with other healthcare facilities and networks with other school nurses should be increased. Specific guide-lines on how to support girls with menstrual pain should be implemented

Sleep and its relation to health-related quality of life in 3-10-year-old children

BackgroundConsidering the reports of increasing sleep problems in children, affecting health and well-being in young children and their families, we found it important to gain more knowledge about sleep and its correlation to health-related quality of life (HRQoL) in young, healthy children. The aims with this study were to describe sleep quality, sleep duration, and HRQoL in healthy 3-10-year-old children and to test associations between childrens sleep and HRQoL.MethodsParents of 160 children (average age: 6.9years, SD 2.2) participated in the study. Sleep onset problems (SOP), sleep maintenance problems (SMP), and sleep duration were measured by the Pediatric Insomnia Severity Index (PISI). KIDSCREEN-27 was used to measure HRQoL in five dimensions: physical well-being, psychological well-being, autonomy and parent relation, social support and peers, and school environment.ResultsThe average score was 2.2 for SOP (SD +/-2.2) and 1.3 for SMP (SD +/-1.6). Few children (2%) were reported to sleep less than 8 h per night. Younger children had statistically significant higher SOP and SMP than older children. Correlations were found between SOP and poor psychological well-being (p&amp;lt;0.05, rho=-0.16), and between SMP and poor physical wellbeing (p&amp;lt;0.05, rho=-0.16), psychological well-being (p&amp;lt;0.05, rho=-0.21), poor school environment (p&amp;lt;0.01, rho=-0.29), autonomy and parent relation (p&amp;lt;0.05, rho=-0.16), and poor social support and peers (p&amp;lt;0.05, rho=-0.19). Conclusion: Childrens sleep associates with health-related quality of life and needs to be acknowledged in child health care settings and schools.Funding Agencies|Futurum Academy of Health and Care; Forsknings-och stipendieforvaltningen i Ostergotland 2018 (Stiftelseforvaltningen -US stiftelse for medicinsk forskning: Barndiabetesforskning) [92011]; Forsknings-och stipendieforvaltningen i Ostergotland 2018 (Halsofonden, Medicinska fakultetens fondstyrelse); Linkoping University; Jonkoping County Council</p

Measuring hair cortisol concentration, insomnia symptoms and quality of life in preschool children with severe early childhood caries - a case-control pilot study

ObjectiveThis study aimed to 1) investigate the relationships between hair cortisol concentration (HCC), insomnia symptoms, Health-Related Quality of Life (HRQoL) and Oral Health-Related Quality of Life (OHRQoL) in preschool children with severe early childhood caries, 2) compare HCC, insomnia symptoms, HRQoL and OHRQoL in preschool children with severe early childhood caries with these factors in children without clinical signs of dental caries, and 3) explore correlations between caries scores and HCC, insomnia symptoms, HRQoL and OHRQoL.Material and MethodsA case-control pilot study, including 12 children with severe early childhood caries and 28 controls, aged 3-5 years. Dental examination was performed and hair samples for cortisol were taken. Parents filled out questionnaires about their childs insomnia symptoms, HRQoL and OHRQoL. Interpreters were used in families with language difficulties.ResultsThe key findings in this pilot study were tendencies that children with severe early childhood caries had more insomnia symptoms, and poorer OHRQoL than the controls. Caries scores was correlated with insomnia symptoms and OHRQoL.ConclusionsDentists should include questions about the childs sleep when they see the child, as insomnia related to dental caries may lead to several physical, mental, and social problems

Sleep quality and mood in mothers and fathers accommodated in the family-centred paediatric ward

Aims and objectives To describe sleep quality and mood in parents accommodated with their sick child in a family‐centred paediatric ward. Secondary aims were to compare mothers’ and fathers’ sleep quality and mood in the paediatric ward and to compare the parents’ sleep quality and mood between the paediatric ward and in a daily‐life home setting after discharge. Background Frequent interruptions, ward noise and anxiety affect parents’ sleep quality and mood negatively when accommodated with their sick child in paediatric wards. Poor sleep quality and negative mood decrease the parents’ ability to sustain attention and focus, and to care for their sick child. Methods This was a prospective and descriptive study. Eighty‐two parents (61 mothers and 21 fathers) with children (median age 6.25 years) admitted to six paediatric wards participated in the study. Uppsala Sleep Inventory, a sleep diary and the Mood Adjective Checklist were used to measure sleep quality and mood. Results The parents had a good sleep quality in the paediatric ward even though they had more nocturnal awakenings compared to home. Moreover, they were less alert, less interested and had reduced concentration, and were more tired, dull and passive in the hospital than at home after discharge. Vital sign checks, noises made by the staff and medical treatment were given reasons influencing sleep. Poor sleep quality correlated with negative mood. Conclusion Parents’ sleep quality in family‐centred paediatric care is good. However, the habitual sleep efficacy before admittance to the hospital is lower than expected and needs to be further investigated. Relevance to Clinical Practice The healthcare professionals should acknowledge parents’ sleep and mood when they are accommodated with their sick child. Further should care at night be scheduled and sleep promoted for the parents to maintain health and well‐being in the family.Funding agencies: Medical Research Council of Southeast Sweden [FORSS-159681]; Region of Ostergotland, Sweden</p

Compassion fatigue and compassion satisfaction in pediatric and neonatal care nurses during the COVID-19 pandemic in Sweden

Purpose: Quality of care and the mental and physical health of nurses are interlinked. The COVID-19 pandemic has imposed an extremely high burden on health care. This study aimed to: 1) describe professional quality of life of registered nurses (RN) working in the pediatric and neonatal care units during the COVID-19 pandemic in Sweden, 2) compare professional quality of life between RNs with and without a Master's degree in specialist nursing pediatric care (MSc), and 3) compare differences in professional quality of life associated with the nursing experience (years). Design and methods: This study adopted a cross-sectional survey design. The PROQoL®-5-questionnaire was administered as a web survey to 160 RNs at four pediatric wards and two neonatal units of two hospitals in Sweden. Results: Seventy-one RNs responded to the survey. Overall, they reported a sufficient professional quality of life. RNs with an MSc suffered significantly lower secondary traumatic stress levels. Experienced RNs reported significantly higher compassion satisfaction and lower occupational burnout. Conclusion: Higher education and longer experience are beneficial for nurses' professional quality of life when working in pediatric care units. Practical implications: Results from this study highlights the importance of offering RN education in pediatric care at master level and supporting novice nurses, to prevent negative professional well-being outcomes in pediatric care, because the health of nurses is of utterly importance when crisis such as a pandemic hits the world. The findings also suggest that the conditions for professional quality of life could improve through activities such as self-care, time for reflection, better working hours, competence-adjusted salary, and educational opportunities

“Like Walking in a Fog”—Parents' perceptions of sleep and their consequences of sleep loss when staying overnight with child in hospital

Disruption of parental sleep in hospital, with frequent awakenings and poor sleep quality, limits the parents' resources to meet the child's needs and maintain parental wellbeing. The aim of the study was to explore and describe how parents perceive their sleep when staying overnight with their sick child in hospital. A further aim was to explore and describe parents’ perception of what circumstances influence their sleep in the hospital. Twenty‐two parents who were accommodated with their sick child (0–17 years) in paediatric wards in Norway and Sweden participated. Interviews were conducted during the hospital stay to elicit their perspectives. Phenomenography was used to analyse data. Two descriptive categories were found: (a) “Perceptions of sleep”, with two sub‐categories: “Sleep in the paediatric ward” and “Consequences of sleep loss”; and (b) “Circumstances influencing sleep in the paediatric ward” with three sub‐categories: “The importance of the family”, “Information and routines at the paediatric ward”, and “Accommodation facilities”. Parents’ sleep and needs must be acknowledged in paediatric wards. An individual plan of care for the upcoming night could be a valuable tool for both the parents and nurses. The child's medical needs must be met with respect to the parents’ willingness to take part in the child's care during the night, and the need for rest and sleep for both parent and child