Navigating an unfamiliar world - Parents' experiences of having a child with post COVID-19.

BACKGROUND: Post COVID-19 diagnosis in children has been difficult as there has been a lack of knowledge within the healthcare system, leading to uncertainty concerning how these children should be assessed and treated. To understand the aspects of how parents experience seeking care for their child with an array of symptoms and how the child's symptoms affect their everyday life and family situation, we need to listen to the parents' stories about having a child living with post COVID-19. PURPOSE: To describe parents' experiences of seeking professional care for their child with post COVID-19 symptoms and what kinds of impacts there are on their children's daily life. DESIGN AND METHODS: A qualitative study with an inductive and exploratory approach including seventeen parents of children with post COVID-19. Face-to-face interviews were conducted between October 2022 and March 2023 and analyzed with thematic analysis. RESULTS: The findings describe how the parents' constant struggle for their child and how the child's symptoms affect their daily life and their family situation in three themes: Navigating the unknown, Navigating life with post COVID-19, and Navigating between fear and hope for an uncertain future. CONCLUSIONS: This study corroborates the parents' struggle for acceptance of the children's problems in the health system. PRACTICE IMPLICATIONS: It is important that health care focuses on the everyday world and the problems that the child and parents express to understand the family's perspective and the problems that arise in everyday life.

The effects of a sleep robot intervention on sleep, depression and anxiety in adults with insomnia-A randomized waitlist-controlled trial.

The study objective was to assess if a 3-week intervention with the Somnox sleep robot had effects on symptoms of insomnia, somatic arousal, and/or concurrent symptoms of depression and anxiety in adults with insomnia, compared with a waitlist-control group. The participants (n = 44) were randomized to a 3-week intervention with the sleep robot (n = 22), or to a waitlist-control group (n = 22). The primary outcome measure was the Insomnia Severity Index administered at baseline, mid-intervention, post-intervention and at 1-month follow-up. Secondary outcome measures were the Pre-Sleep Arousal Scale, and the Hospital Anxiety and Depression Scale. Additionally, sleep-onset latency, wake time after sleep onset, total sleep time and sleep efficiency were measured the week prior to and the last week of the intervention, both subjectively with the Consensus Sleep Diary and objectively with wrist actigraphy. Mixed-effects models were used to analyse data. The effect of the sleep robot on the participants' insomnia severity was not statistically significant. The differences between the intervention group and the control group on the measures of arousal, anxiety and depression were also not statistically significant, and neither were the sleep diary and actigraphy variables. In conclusion, a 3-week intervention with daily at-home use of the robot was not found to be an effective method to relieve the symptom burden in adults with insomnia.

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 knowledge about 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, and External conditions for conducting professional work as a school nurse. CONCLUSION: School nurses felt competent in supporting girls with menstrual pain. However, they lacked structural, 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. Cooperation with other healthcare facilities and networks with other school nurses should be increased. Specific guidelines on how to support girls with menstrual pain should be implemented.

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.

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

OBJECTIVE: This 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 METHODS: A 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 child's insomnia symptoms, HRQoL and OHRQoL. Interpreters were used in families with language difficulties. RESULTS: The 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. CONCLUSIONS: Dentists should include questions about the child's sleep when they see the child, as insomnia related to dental caries may lead to several physical, mental, and social problems.

Parental sleep when their child is sick: A phased principle-based concept analysis.

Sleep is a common challenge for parents with sick children and can impact parents' health, wellbeing, and caregiving responsibilities. Despite the vast research around parental sleep when their child is sick, the concept is not clearly defined. A phased principle-based concept analysis that includes triangulation of methods and quality criteria assessment was used to explore how the concept is described, used, and measured in the current literature. The aim was to analyse and clarify the conceptual, operational, and theoretical basis of parental sleep when their child is sick to produce an evidence-based definition and to identify knowledge gaps. A systematic literature search including databases CINAHL, Embase, MEDLINE, PsychARTICLES, PsychINFO, Pubmed, Scopus and Web of Science, identified 546 articles. The final dataset comprised 74 articles published between 2005 and 2021 and was assessed using a criteria tool for principle-based concept analysis. Data were managed using NVivo, and thematic analysis was undertaken. A precise definition is not present in the literature. Various tools have been used to measure parents' sleep, as well as exploration via interviews, open-ended questions, and sleep diaries. The terminology used varied. Parental sleep when their child is sick is interrelated with other concepts (e.g., stress). A recommended definition is offered. A conceptual understanding of parental sleep when their child is sick will help to guide translational research and to conduct studies critical to clinical practice and research. Future research includes developing a measurement tool for parental sleep when their child is sick to be used in study design and future interventions.

Psychological symptoms in widowed parents with minor children, 2-4 years after the loss of a partner to cancer.

OBJECTIVES: This study aimed to explore psychological symptoms in widowed parents with minor children, 2-4 years after the death of their partner. A second aim was to examine the associations between psychological symptoms and nonmodifiable and modifiable illness and healthcare-related factors. METHODS: A cross-sectional survey study on widowed parents with minor children after the loss of a partner to cancer. In total, 42 parents completed an online questionnaire including instruments for assessing symptoms of anxiety, depression, grief rumination, prolonged grief, and posttraumatic stress. Descriptive statistics, Spearman's correlation coefficients, Mann-Whitney U tests and Kruskal-Wallis tests were used to analyze differences in symptomology based on modifiable and nonmodifiable factors. RESULTS: Parents reported moderate-severe symptoms of anxiety, posttraumatic stress, and depression. Reporting having received more information during the partner's illness regarding how the illness could affect the partner's somatic and psychological health and where to turn for support were associated with fewer psychological symptoms. CONCLUSIONS: A substantial proportion of widowed parents with minor children reported a moderate-severe symptom burden regarding depression, anxiety, and posttraumatic stress, and less so with prolonged grief symptoms. This study also highlighted the value of receiving information from healthcare personnel regarding the somatic and psychological effects of a partner's illness and where widowed parents can turn for support.

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

BACKGROUND: Considering 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 children's sleep and HRQoL. METHODS: Parents of 160 children (average age: 6.9 years, 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. RESULTS: The 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 < 0.05, ρ = - 0.16), and between SMP and poor physical wellbeing (p < 0.05, ρ = - 0.16), psychological well-being (p < 0.05, ρ = - 0.21), poor school environment (p < 0.01, ρ = - 0.29), autonomy and parent relation (p < 0.05, ρ = - 0.16), and poor social support and peers (p < 0.05, ρ = - 0.19). CONCLUSION: Children's sleep associates with health-related quality of life and needs to be acknowledged in child health care settings and schools.

Position Statement of the International Network for Child and Family Centered Care: Child and Family Centred Care during the COVID19 Pandemic.

It is the position of the International Network for Child and Family Centered Care (INCFCC) that COVID19 restrictions pose tremendous challenges for the health care team in their efforts to provide child and family centered care (CFCC). COVID-19 restrictions impact on the family's right to be presernt with their ill child and to contribute to the caring process. A limited number of articles have discussed challenges about the successful delivery of CFCC during the COVID-19 pandemic. Based on current literature, the INCFCC stresses the need for continuous facilitation implementation of child and family centred care as, it is essential for children's physical and psychological wellbeing. Furthermore we believe that the families' presence and participation holds more benefits than risks to the health of children, their families, and the health care team.

"Like Walking in a Fog"-Parents' perceptions of sleep and consequences of sleep loss when staying overnight with their 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.

Correction to: Swedish translation and validation of the Pediatric Insomnia Severity Index.

An amendment to this paper has been published and can be accessed via the original article.

Swedish translation and validation of the Pediatric Insomnia Severity Index.

BACKGROUND: To increase health and well-being in young children, it is important to acknowledge and promote the child's sleep behaviour. However, there is a lack of brief, validated sleep screening instruments for children. The aims of the study were to (1) present a Swedish translation of the PISI, (2) examine the factor structure of the Swedish version of PISI, and test the reliability and validity of the PISI factor structure in a sample of healthy children in Sweden. METHODS: The English version of the PISI was translated into Swedish, translated back into English, and agreed upon before use. Parents of healthy 3- to 10-year-old children filled out the Swedish version of the PISI and the generic health-related quality of life instrument KIDSCREEN-27 two times. Exploratory and confirmatory factor analyses for baseline and test-retest, structural equation modelling, and correlations between the PISI and KIDSCREEN-27 were performed. RESULTS: In total, 160 parents filled out baseline questionnaires (test), whereof 100 parents (63%) filled out the follow-up questionnaires (retest). Confirmative factor analysis of the PISI found two correlated factors: sleep onset problems (SOP) and sleep maintenance problems (SMP). The PISI had substantial construct and test-retest reliability. The PISI factors were related to all KIDSCREEN-27 dimensions. CONCLUSIONS: The Swedish version of the PISI is applicable for screening sleep problems and is a useful aid in dialogues with families about sleep.

A systematic integrative review of parents' experience and perception of sleep when they stay overnight in the hospital together with their sick children.

AIMS AND OBJECTIVES: To elucidate knowledge available on parents' experience and perception of sleep when they stay overnight in hospital together with their sick children. BACKGROUND: In Nordic countries, children are entitled to have at least one parent with them during hospitalisation. Parents' sleep, when accommodated at the hospital during the child's admission, may be a challenge. DESIGN: A systematic literature search was conducted in EMBASE, MEDLINE and PsycINFO; period is restricted from 1 January 2007 to 1 April 2019. Studies included were those in which parents were accommodated in hospital with their child, 0-18 years of age, for at least one night. Original peer-reviewed scientific research papers conducting qualitative, quantitative or mixed designs were included. Systematic reviews were not included. This systematic integrative review was registered in PROSPERO and performed according to the PRISMA guidelines. All authors participated in study selection, data extraction and quality assessment of the literature. RESULTS: Fifteen studies were included, and they varied in terms of origin, aims, design, methods used and sample size. Three overall main themes appeared: sleep quality, factors affecting sleep and consequences of sleep loss. Combined psychological factors were found to affect parents' sleep, as well as isolated psychological factors, for example, stress, anxiety, worries and difficult thoughts. Environmental and social factors were also identified, for example, privacy and caring for family. CONCLUSION: Study of this subject is still in its exploratory phase. There is a need for the development of theory of substance in the clarification of the meaning of sleep among parents during difficult times such as children's hospitalisation. RELEVANCE TO CLINICAL PRACTICE: Understanding risk factors associated with sleep and sleep deprivation in parents staying overnight in the hospital with their sick child is important, since lack of sleep may lead to serious stress-related outcomes for the parents.

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.

"To Cope with Everyday Life, I Need to Sleep" - A Phenomenographic Study Exploring Sleep Loss in Parents of Children with Atopic Dermatitis.

PURPOSE: The whole family is affected when a child has atopic dermatitis (AD), and parents experience sleep disruption related to the child's condition leading to physical and mental exhaustion, mood swings, loss of concentration and lower job performance. This study aimed to explore and describe perceptions of sleep in parents of children <2 years old with AD, consequences of parental sleep loss, and what strategies the parents used to manage sleep loss and to improve sleep. DESIGN AND METHODS: This qualitative interview study had an inductive and descriptive design. Twelve parents (eleven mothers and one father) participated in the study. Data analysis was performed using a phenomenographic approach. RESULTS: Three categories of description were found: Acceptance and normalization of parental sleep loss; Changed routines and behavior to compensate for sleep loss; and Support is needed to gain sleep and manage daily life. CONCLUSIONS: Sleep loss due to the child's AD affected the parents' emotional state, mood, well-being, cognitive function, ability to concentrate and take initiative, and sensitivity to stress and sound negatively. The parents managed their sleep loss mainly by changing their behavior and creating new routines, by taking me-time and through support from partners. PRACTICE IMPLICATIONS: Pediatric nurses should acknowledge sleep loss in parents of small children with AD in time to prevent negative consequences, which affect the well-being of the entire family. Advice on how to improve sleep should be given early to increase the parents' understanding, make them feel safer and strengthen them in their parenthood.

Sleep of Parents Living With a Child Receiving Hospital-Based Home Care: A Phenomenographical Study.

BACKGROUND: Caring for an ill child at home gives the family the chance to be together in a familiar environment. However, this involves several nocturnal sleep disturbances, such as frequent awakenings and bad sleep quality, which may affect parents' ability to take care of the child and themselves. OBJECTIVES: The aim of this study was to describe parents' perceptions of circumstances influencing their own sleep when living with a child enrolled in hospital-based home care (HBHC) services. METHOD: This is a phenomenographical study with an inductive, exploratory design. Fifteen parents (11 mothers and 4 fathers) with children enrolled in HBHC services were interviewed. Data were analyzed to discover content-related categories describing differences in ways parents experienced sleep when caring for their children receiving HBHC. RESULTS: Four descriptive categories were detected: sleep influences mood and mood influences sleep; support influences safeness and safeness influences sleep; the child's needs influence routines and routines influence sleep; and "me time" influences sleep. DISCUSSION: Sleep does not affect only the parents' well-being but also the child's care. Symptoms of stress may limit the parents' capacity to meet the child's needs. Support, me time, and physical activity were perceived as essential sources for recovery and sleep. It is important for nurses to acknowledge parental sleep in the child's nursing care plan and help the parents perform self-care to promote sleep and maintain life, health, and well-being.

Hindering and buffering factors for parental sleep in neonatal care. A phenomenographic study.

AIMS AND OBJECTIVES: To explore and describe how parents of preterm and/or sick infants in neonatal care perceive their sleep. BACKGROUND: Parents experience many stressful situations when their newborn infant is preterm and/or sick. This affects bonding. By developing more family-centred care units with single-family rooms, parents are given the opportunity to stay and care for their newborn infant(s) 24 hours a day. Lack of sleep may affect new parents' ability to cope with the many challenges they face on a daily basis. DESIGN: A phenomenographic study with an inductive and exploratory design. METHODS: Semi-structured interviews were conducted with twelve parents of infants in neonatal care between January-March 2012. To describe variations in perception of the phenomenon, data were analysed using phenomenography. FINDINGS: Four descriptive categories were identified within the phenomenon sleep in parents of preterm and/or sick infants in neonatal care: impact of stress on sleep; how the environment affects sleep; keeping the family together improves sleep; and, how parents manage and prevent tiredness. CONCLUSION: Anxiety, uncertainty and powerlessness have a negative influence on sleep. This can be decreased by continuous information, guidance and practical support. Skin-to-skin care was perceived as a stress-reducing factor that improved relaxation and sleep and should be encouraged by the nurse. The parents also mentioned the importance of being together. Having a private place where they could relax and take care of themselves and their newborn infant improved sleep. It was also desirable to involve older siblings in order to decrease feelings of loneliness, sadness and isolation. RELEVANCE FOR CLINICAL PRACTICE: Improved parental sleep in neonatal care may help the families cope with the situation and facilitate problem-solving, emotional regulation and the transition to parenthood.

A robot intervention for adults with ADHD and insomnia-A mixed-method proof-of-concept study.

OBJECTIVE: To investigate individual effects of a three-week sleep robot intervention in adults with ADHD and insomnia, and to explore participants' experiences with the intervention. METHODS: A proof-of-concept study with a mixed-methods design (n = 6, female = 4) where a repeated ABA single-case study was combined with interviews. Data were collected with the Consensus Sleep Diary, wrist actigraphy, questionnaires on symptoms of insomnia, arousal, emotional distress, and ADHD, and through individual interviews. RESULTS: Visual analysis of the sleep diary and actigraphy variables did not support any effects from the robot intervention. Half of participants reported clinically relevant reductions on the Insomnia Severity Index from pre- to post-intervention. No changes regarding ADHD or arousal. Thematic analysis of the interviews resulted in three themes: (1) A pleasant companion, (2) Too much/not enough, and (3) A new routine. CONCLUSION: Adjustments of the intervention ought to be made to match the needs of patients with both ADHD and insomnia before the next trial is conducted.

Mind, Body and Machine: Preliminary Study to Explore Predictors of Treatment Response After a Sleep Robot Intervention for Adults with Insomnia.

Introduction: The study aimed to explore characteristics of responders to a sleep robot intervention for adults with insomnia, and the likelihood that participants responded to the intervention. Methods: Data from the intervention and the control group in a randomized waitlist-controlled trial (n = 44) were pooled together after both had undergone the intervention. A repeated measures ANOVA and Friedman tests were used to explore changes over time. Differences in baseline characteristics between responders (n = 13), defined as a reduction of -5 on the Insomnia Severity Index from pre- to post-intervention, and non-responders (n = 31) were analyzed with t-tests and chi-square tests. Finally, logistic regression models were estimated. Results: Baseline anxiety was the only statistically significant difference between responders and non-responders (p = 0.03). A logistic regression model with anxiety and sleep quality as predictors was statistically significant, correctly classifying 83.3% of cases. Discussion: The results imply that people with lower anxiety and higher sleep quality at baseline are more likely to report clinically significant improvements in insomnia from the sleep robot intervention.

Time of initiation of skin-to-skin contact in extremely preterm infants in Sweden.

AIM: To describe the time of first skin-to-skin contact in extremely preterm infants in a national perspective and to investigate possible factors affecting the time of first skin-to-skin contact. METHODS: A population-based prospective descriptive study of extremely preterm infants (n = 520) in seven regional hospitals in Sweden. RESULTS: Extremely preterm infants in Sweden experience first skin-to-skin contact with the parent at a median of six postnatal days (range 0-44). Low gestational age, a high score on the clinical risk index for babies, and the number of days on a ventilator tended to delay first skin-to-skin contact. A statistically significant difference was also found between regional hospitals. CONCLUSION: There is a difference in the time of first skin-to-skin contact based on the infant's medical condition and the tradition in the neonatal intensive care unit at the regional hospital where the infant is born.