Publications by authors named "Hanne Aagaard"

24 Publications

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Being cross pressured-parents' experiences of the transfer from paediatric to adult care services for their young people with long term conditions: A systematic review and qualitative research synthesis.

Int J Nurs Stud 2021 Mar 9;115:103851. Epub 2020 Dec 9.

Department of Health and Nursing Science, University of Agder, Campus Kristians and, Universitetsveien 25, 4630 Kristiansand, Norway. Electronic address:

Background: Family members of young people (13-24 years) with long-term conditions tend to experience multiple challenges when their children transfer from paediatric to adult care, as do the patients themselves.

Objectives: To identify, interpret and theoretically conceptualise the meaning of parents' experiences of the transfer from paediatric to adult care of their young people with long-term conditions.

Design: A qualitative research synthesis.

Data Sources: We obtained articles from Medline, CINAHL, PsycINFO, EMBASE, Scopus, and Web of Science. Unpublished theses and dissertations were searched for using Google Scholar, Mednar, and ProQuest Dissertations and Theses.

Review Methods: Based on a previously published protocol, we followed the guidelines from the Joanna Briggs Institute. Sandelowski and Barroso's qualitative research synthesis approach guided the metasynthesis. Articles published between 1999 and March 2019 were systematically searched for.

Findings: Twenty-three reports from seven Western countries representing 454 parents including significant others such as aunts and grandparents of 462 young people with various diagnoses contributed to the review. 'Being cross-pressured' was the metasynthesis found to reflect parents' experiences of the transfer from paediatric to adult care of their young people with long-term conditions. The metasynthesis comprised four themes: 'Fluctuating between parental roles', 'Navigating contrasting healthcare contexts', 'Making decisions in the face of inner conflict', and 'Trusting their child's self-management ability'.

Conclusions: Our metasynthesis finding of parents' experiences of being cross-pressured provides a new way of thinking about the study phenomena which is supported by transitions theory holding that multiple transitions can take place simultaneously involving myriads of concurrent and conflicting demands. The cross pressure may overwhelm parents. The clinical implications are to recognise parents' experiences and distress in healthcare planning to promote safe and predicable transfers of their young people. Provision of healthcare to parents during transfer needs to be tailored to a collaborative decision-making process between parents, their young people, and involved practitioners across paediatric and adult healthcare services. Tweetable abstract: Parents experienced being cross-pressured when their young people with long-term conditions were transferred from paediatric to adult care.
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http://dx.doi.org/10.1016/j.ijnurstu.2020.103851DOI Listing
March 2021

Physical activity experiences of children and adolescents with asthma: a qualitative systematic review protocol.

JBI Evid Synth 2020 11;18(11):2390-2395

Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway.

Objective: The objective of the review is to synthesize existing knowledge about experiences of children and adolescents with asthma related to participation in, or limitation of, physical activity.

Introduction: Limitations of physical activity, expressed as a barrier of bodily movement, may relate to physiological restraints, as well as emotional and social delimitation, in children and adolescents with asthma. Participation in physical activity is related to management of asthma and is important for social inclusion. Through childhood and adolescence, physical activity enhances physical, cognitive, and social development, and a dose-response relationship between physical activity and several indicators of improved health has been established. Knowledge is needed about experiences of physical activity in children and adolescents with asthma to tailor care and implement exercise and physical activity supporting interventions into clinical practice.

Inclusion Criteria: This review will consider qualitative studies that include subjective experiences related to participation in, or limitation of, physical activity in children and adolescents (six to 18 years of age) with asthma. All contexts and countries will be included.

Methods: MEDLINE, Embase, PsycINFO, CINAHL, SPORTDiscus, SocINDEX, and Social Science Citation Index List will be searched for relevant studies. Studies published in English with no date limitation will be included. Study selection, assessment of methodological quality, data extraction, synthesis, and assessment of confidence in the findings will be conducted using the JBI meta-aggregation approach.

Systematic Review Registration Number: PROSPERO CRD42020164797.
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http://dx.doi.org/10.11124/JBIES-20-00004DOI Listing
November 2020

Significant others' experience of hospitalized patients' transfer to home: A systematic review and meta-synthesis.

Z Evid Fortbild Qual Gesundhwes 2018 12 23;139:1-9. Epub 2018 Nov 23.

Danish Centre of Systematic Reviews: a Joanna Briggs Institute Centre of Excellence, Aalborg University, Aalborg, Denmark; Randers Regional Hospital, Randers and Department of Clinical medicine, Aarhus University, Aarhus, Denmark.

Background: Significant others are individuals representing family members or neighbors, friends, colleagues or members of the same household, who act as relatives or surrogates. Significant others play an important role when patients are transferred or discharged after hospitalization.

Objective: The objective of this review is to identify, appraise and synthesize the best available evidence exploring significant others' experiences of the discharge or transfer of adult patients after hospitalization.

Methods: A qualitative comprehensive systematic review and meta aggregation.

Types Of Participants: Participants of this review are the 'significant other(s); persons who are important or influential to the patient's life.

Phenomena Of Interest: How the significant others' experience hospitalized patients' transitions and the psychosocial and existential issues during transfer from hospital to home.

Context: Studies that investigate the organizational culture during hospitalization.

Types Of Studies: Studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.

Search Strategy: The search aimed at finding published and unpublished studies in English, German, Danish, Swedish and Norwegian, and was unrestricted by time. Eleven electronic databases and eleven websites were searched.

Critical Appraisal: Methodological validity of the qualitative papers was assessed independently by two reviewers using the standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument.

Data Extraction: Data were extracted from papers included in the review using the standardized data extraction tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument.

Data Synthesis: Qualitative research findings were synthesized.

Results: A total of 189 findings from twelve studies were aggregated into three categories. An aggregated finding was generated based on the primary studies: SOs existential strength is linked to preparations for the discharge including care planning meeting(s) and learning-by-doing care activities led by health care providers during hospitalizations.

Conclusions: The studies in this review provided useful and credible statements from caregivers' voices that are not previously aggregated nor presented. The findings enlighten both positive and burdensome experiences in the everyday life of caring for a significant other after discharge.
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http://dx.doi.org/10.1016/j.zefq.2018.11.006DOI Listing
December 2018

Comparison of Two Pediatric Early Warning Systems: A Randomized Trial.

J Pediatr Nurs 2019 Jan - Feb;44:e58-e65. Epub 2018 Nov 22.

Research Centre for Emergency Medicine, Aarhus University Hospital, Aarhus N, Denmark. Electronic address:

Purpose: Pediatric early warning systems (PEWS) are used to detect clinical deterioration in hospitalized children. Few PEWSs have been validated in multicenter studies and the performance in many single-center studies varies. We wanted to compare two PEWS in a multicenter study.

Design And Methods: Randomized multicenter unblinded trial conducted at all pediatric departments in the Central Denmark Region. A random sample of 16,213 pediatric patients (31,337 admissions) were enrolled from November 2014 to March 2017. Patients were randomized to The Bedside PEWS or CDR PEWS. The primary outcome was the sum of hospitalized children experiencing in-hospital clinical deterioration requiring transfer to a higher level of care.

Results: Of the 21,077 pediatric patients who met the inclusion criteria, 16,213 (from 31,337 admissions) were enrolled. 22 unplanned transfers to a higher level of care were identified: 14 in The Bedside PEWS group and 8 in the CDR PEWS group, a non-statistical difference (P = 0.20). No significant difference in predicting unplanned transfer to a higher level of care (P = 0.78) were detected and no significant difference was observed in the secondary outcomes.

Conclusions: The CDR PEWS prevents as many critical events as The Bedside PEWS. Shorter median time to PEWS reassessment when CDR PEWS was used and fewer reassessments being done to late could reflect that the CDR PEWS was more acceptable to staff.

Practice Implications: The results from this study should be interpreted with caution as very few patients experiencing clinical deterioration and further studies should also focus on challenges trying to evaluate PEWS.
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http://dx.doi.org/10.1016/j.pedn.2018.11.001DOI Listing
June 2019

Clinical profile of children experiencing in-hospital clinical deterioration requiring transfer to a higher level of care.

J Child Health Care 2019 12 19;23(4):522-533. Epub 2018 Aug 19.

Department of Child and Adolescent Health, Aarhus University Hospital, Aarhus N, Denmark.

Few studies have described the various reasons for unplanned transfer to a higher level of care due to clinical deterioration and the clinical profile of those paediatric patients. However, an understanding of the nature of illness is important to patient safety. This study aimed to describe the frequency and clinical characteristics of children who experience unplanned transfer to a higher level of care due to clinical deterioration. A retrospective, descriptive registry study design was used. Of the 92 paediatric patients included, 69% ( = 64) was male. The median age was 2.1 years (interquartile range 0.4-6.9) with 33% being infants under 1 year. The highest number (61.3%) of transfers occurred between 8 and 16 hours. In the 24 hours leading up to a transfer due to clinical deterioration, 15 patients had no vital parameters documented, and 77 patients had least one vital parameter measured. Physiological abnormalities were present in 19 (37.7%) of the 77 patients where vital parameters were documented. This study provides essential baseline data to inform further research to improve care and treatment for critically ill children in paediatric wards. This study's findings suggest reporting of vital parameters is incomplete and infrequent.
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http://dx.doi.org/10.1177/1367493518794400DOI Listing
December 2019

Pediatric Early Warning Score Systems, Nurses Perspective - A Focus Group Study.

J Pediatr Nurs 2018 Jul-Aug;41:e16-e22. Epub 2018 Feb 14.

Lovisenberg Diaconal University College, Norway; Section for Nursing, Department of Public Health, Aarhus University, Denmark.

Purpose: Pediatric early warning score (PEWS) systems are used to monitor pediatric patients' vital signs and facilitate the treatment of patients at risk of deteriorating. The aim of this study was to gain knowledge about nurses' experiences with PEWS and to highlight factors facilitating and impeding the use of PEWS tools in clinical practice.

Design And Methods: An exploratory qualitative design was chosen using focus group interviews to gain a deeper understanding of nurses' experiences with PEWS. A total of five focus group interviews were conducted at three hospitals, and a qualitative meaning condensation analysis as described by Kvale and Brinkmann was performed.

Results: Seven themes were identified, including i) lack of interdisciplinary awareness, ii) clinical judgment and PEWS-a multi-faceted approach, iii) PEWS supports a professional language, iv) monitoring the patient's - a challenge, v) PEWS helps to visualize the need for escalating care, vi) an inflexible and challenging tool, and vii) supportive tools enhance the nurses' experiences of PEWS positively.

Conclusions: Our findings suggest that attention should be given to nurses' perceptions of how both clinical judgment and PEWS should be seen as essential in providing nurses with information about the patients' conditions. If not, the risk of failing to recognize patients' deteriorating conditions will remain as this can have an impeding influence on nurses' use of PEWS. From the nurses' perspective, medical doctors seemed unaware of their role in using PEWS.
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http://dx.doi.org/10.1016/j.pedn.2018.02.004DOI Listing
February 2018

Parents' experiences of neonatal transfer. A meta-study of qualitative research 2000-2017.

Nurs Inq 2018 07 15;25(3):e12231. Epub 2018 Feb 15.

Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway.

Transfers of critically ill neonates are frequent phenomena. Even though parents' participation is regarded as crucial in neonatal care, a transfer often means that parents and neonates are separated. A systematic review of the parents' experiences of neonatal transfer is lacking. This paper describes a meta-study addressing qualitative research about parents' experiences of neonatal transfer. Through deconstruction and reflections of theories, methods, and empirical data, the aim was to achieve a deeper understanding of theoretical, empirical, contextual, historical, and methodological issues of qualitative studies concerning parents' experiences of neonatal transfer over the course of this meta-study (2000-2017). Meta-theory and meta-method analyses showed that caring, transition, and family-centered care were main theoretical frames applied and that interviewing with a small number of participants was the preferred data collection method. The meta-data-analysis showed that transfer was a scary, unfamiliar, and threatening experience for the parents; they were losing familiar context, were separated from their neonate, and could feel their parenthood disrupted. We identified 'wavering and wandering' as a metaphoric representation of the parents' experiences. The findings add knowledge about meta-study as an approach for comprehensive qualitative research and point at the value of meta-theory and meta-method analyses.
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http://dx.doi.org/10.1111/nin.12231DOI Listing
July 2018

Relationship between physical activity level and psychosocial and socioeconomic factors and issues in children and adolescents with asthma: a scoping review.

JBI Database System Rev Implement Rep 2017 08;15(8):2182-2222

1Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway 2Clinical Research Unit, Randers Regional Hospital, Randers, Denmark 3Department of Clinical Medicine, Aarhus University, Aarhus, Denmark 4Department of Pediatrics, Aarhus University Hospital, Aarhus, Denmark 5Section of Nursing, Department of Public Health, Health, Aarhus University, Aarhus, Denmark 6Department of Coaching and Psychology, Norwegian School of Sports Science, Oslo, Norway 7Danish Centre of Systematic Reviews: a Joanna Briggs Institute Center of Excellence, The Center of Clinical Guidelines - Clearing house, Aalborg University, Aalborg, Denmark 8Faculty of Nursing and Health Sciences, Nord University, Bodo, Norway 9Department of Pediatrics, Sørlandet Hospital, Kristiansand, Norway.

Background: Asthma is a heterogeneous chronic airway disease which may reduce capability for physical activity. In healthy peers, physical activity is influenced by psychosocial and socioeconomic factors. Knowledge about the role of these factors has not been mapped in children and adolescents with asthma.

Objective: The main objective of this scoping review was to identify psychosocial and socioeconomic factors associated with physical activity level in children and adolescents with asthma in the literature. The specific objectives were to map the instruments used to measure these factors, report on the construction and validation of these instruments, map psychosocial and socioeconomic issues related to physical activity level reported in qualitative studies, and identify gaps in knowledge about the relationship between psychosocial and socioeconomic factors and physical activity level in children and adolescents with asthma.

Inclusion Criteria Types Of Participants: Children and adolescents with asthma aged six to 18 years.

Concept: Psychosocial and socioeconomic factors related to physical activity level and participation.

Context: All physical activity contexts.

Types Of Sources: Quantitative and qualitative primary studies in English, with no date limit.

Search Strategy: The databases searched included nine major databases for health and sports science, and five databases for unpublished studies. After screening and identification of studies, the reference lists of all identified reports were searched, and forward citation searches were conducted using four databases.

Extraction Of The Results: The following data were extracted: (a) relevant study characteristics and assessment of physical activity level, (b) instruments used to assess psychosocial and socioeconomic factors, (c) association between physical activity level and these factors, (d) construction and validation of instruments, and (e) psychosocial and socioeconomic issues related to physical activity participation.

Presentation Of The Results: Twenty-one quantitative and 13 qualitative studies were included. In cross-sectional studies, enjoyment, physical self-concept, self-efficacy, attitudes and beliefs about physical activity and health, psychological distress, health-related quality of life, and social support were more often reported as being correlated with physical activity level. In three studies, the construct validity was assessed by factor analysis and construct reliability tests for the study population. Qualitative studies reported 10 issues related to physical activity participation, and capability and being like peers were most commonly reported. There was no direct evidence that qualitative research informed the development or adjustment of instruments in quantitative studies.

Conclusions: Seven psychosocial factors correlated with physical activity level; capability and being like peers were the most commonly reported issues. Reports of the construction and validation of instruments were sparse.
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http://dx.doi.org/10.11124/JBISRIR-2016-003308DOI Listing
August 2017

Inter-rater reliability of two paediatric early warning score tools.

Eur J Emerg Med 2019 Feb;26(1):34-40

Research Center for Emergency Medicine.

Background: Paediatric early warning score (PEWS) assessment tools can assist healthcare providers in the timely detection and recognition of subtle patient condition changes signalling clinical deterioration. However, PEWS tools instrument data are only as reliable and accurate as the caregivers who obtain and document the parameters.

Objective: The aim of this study is to evaluate inter-rater reliability among nurses using PEWS systems.

Design: The study was carried out in five paediatrics departments in the Central Denmark Region. Inter-rater reliability was investigated through parallel observations. A total of 108 children and 69 nurses participated. Two nurses simultaneously performed a PEWS assessment on the same patient. Before the assessment, the two participating nurses drew lots to decide who would be the active observer. Intraclass correlation coefficient, Fleiss' κ and Bland-Altman limits of agreement were used to determine inter-rater reliability.

Results: The intraclass correlation coefficients for the aggregated PEWS score of the two PEWS models were 0.98 and 0.95, respectively. The κ value on the individual PEWS measurements ranged from 0.70 to 1.0, indicating good to very good agreement. The nurses assigned the exact same aggregated score for both PEWS models in 76% of the cases. In 98% of the PEWS assessments, the aggregated PEWS scores assigned by the nurses were equal to or below 1 point in both models.

Conclusion: The study showed good to very good inter-rater reliability in the two PEWS models used in the Central Denmark Region.
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http://dx.doi.org/10.1097/MEJ.0000000000000493DOI Listing
February 2019

A multicentre, randomised intervention study of the Paediatric Early Warning Score: study protocol for a randomised controlled trial.

Trials 2017 06 8;18(1):267. Epub 2017 Jun 8.

Research Centre for Emergency Medicine, Aarhus University Hospital, Trøjborgvej 72-74, Bygning 20, 8200, Aarhus N, Denmark.

Background: Patients' evolving critical illness can be predicted and prevented. However, failure to identify the signs of critical illness and subsequent lack of appropriate action for patients developing acute and critical illness remain a problem. Challenges in assessing whether a child is critically ill may be due to children's often uncharacteristic symptoms of serious illness. Children may seem relatively unaffected until shortly before circulatory and respiratory failure and cardiac arrest. The Bedside Paediatric Early Warning Score has been validated in a large multinational study and is used in two regions in Denmark. However, healthcare professionals experience difficulties in relation to measuring blood pressure and to the lack of assessment of children's level of consciousness. In addition, is it noteworthy that in 23,288-hour studies, all seven items of the Bedside Paediatric Early Warning Score were recorded in only 5.1% of patients. This trial aims to compare two Paediatric Early Warning Score (PEWS) models to identify the better model for identifying acutely and critically ill children. The hypothesis is that the Central Denmark Region PEWS model is superior to the Bedside PEWS in terms of reducing unplanned transfers to intensive care or transfers from regional hospitals to the university hospital among already hospitalised children.

Methods/design: This is a multicentre, randomised, controlled clinical trial where children are allocated to one of two different PEWS models. The study involves all paediatric departments and one emergency department in the Central Denmark Region. The primary outcome is unplanned transfer to the paediatric intensive care unit or transfer from regional hospitals to the university hospital. Based on preliminary data, 14,000 children should be included to gain a power of 80% (with a 5% significance level) and to detect a clinically significant difference of 30% of unplanned transfers to intensive care or from regional hospitals to the paediatric department at the university department. A safety interim analysis will be performed after inclusion of 7000 patients.

Discussion: This is the first randomised trial to investigate two different PEWS models. This study demonstrates the safety and effectiveness of a new PEWS model and contributes to knowledge of hospitalised children's clinical deterioration.

Trial Registration: ClinicalTrials.gov, NCT02433327 . Registered on 27 April 2015.
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http://dx.doi.org/10.1186/s13063-017-2011-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5465452PMC
June 2017

Relationship between physical activity level and psychosocial and socioeconomic factors and issues in children and adolescents with asthma: a scoping review protocol.

JBI Database System Rev Implement Rep 2017 02;15(2):269-275

1Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway 2Clinical Research Unit, Randers Regional Hospital, Randers, Denmark 3Department of Clinical Medicine, Aarhus University, Aarhus, Denmark 4Department of Paediatrics, Aarhus University Hospital, Aarhus, Denmark 5Section of Nursing, Department of Public Health Aarhus University, Aarhus, Denmark 6Department of Coaching and Psychology, Norwegian School of Sports Science, Oslo, Norway 7Department of Health Science and Technology and Danish Centre of Systematic Reviews: a Joanna Briggs Institute Centre of Excellence, The Center of Clinical Guidelines - Clearing House, Aalborg University, Aalborg, Denmark 8Department of Nursing and Health, Nord University, Bodø, Norway 9Department of Paediatrics, Sørlandet Hospital, Kristiansand, Norway.

Review Question/objective: The first objective of this scoping review is to identify and map information about instruments used to measure psychosocial and socioeconomic factors associated with level of physical activity (PA) in children and adolescents with asthma that have been reported in quantitative literature, and to report on the construction and validation of these instruments. The second objective is to identify and map psychosocial and socioeconomic issues related to PA level reported in qualitative literature and gaps in the evidence on the relationship between psychosocial and socioeconomic factors and PA level in children and adolescents with asthma.Specifically the review questions are as follows.
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http://dx.doi.org/10.11124/JBISRIR-2016-002945DOI Listing
February 2017

Experiences of health care providers in the transfer of adolescent or young adults with a chronic condition from pediatric to adult hospital care: a systematic review protocol.

JBI Database System Rev Implement Rep 2016 Feb;14(2):38-48

1. Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway2. Clinical Research Unit, Randers Regional Hospital, Randers, Denmark3. Department of Pediatrics, Aarhus University Hospital, Denmark4. Department of Public Health, Aarhus University, Denmark5. Danish Center of Systematic Reviews in Nursing: an Affiliate Center of the Joanna Briggs Institute6. Department of Medicine and Technology, Aalborg University, Denmark.

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http://dx.doi.org/10.11124/jbisrir-2016-2496DOI Listing
February 2016

OC10 - Inter-rater agreement of the Paediatric Early Warning Score tools used in the central Denmark region.

Nurs Child Young People 2016 May;28(4):63

Research Center for Emergency Medicine, Aarhus University Hospital, Denmark.

Unlabelled: Theme: Patient safety Background: Paediatric Early Warning Score (PEWS) tools can assist healthcare providers in the rapid detection and recognition of changes in patient condition. In the central Denmark region two different PEWS tools tested in large-scale RCT study. However, data from PEWS instruments are only as reliable and accurate as the caregiver who obtains and documents the parameters.

Aim: The purpose was to evaluate the inter-rater agreement among nurses using the PEWS systems.

Design: The study was conducted in five paediatrics departments. Inter-observer reliability was investigated through simultaneous blinded PEWS assessment on the same patients by two nurses. Fleiss' kappa was utilized to determine the level of agreement among the raters.

Conclusion: With a paucity of published reliability testing studies, this research attempts to address identified research gaps and will thus inform nursing practice.
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http://dx.doi.org/10.7748/ncyp.28.4.63.s41DOI Listing
May 2016

Parents' experiences of transition when their infants are discharged from the Neonatal Intensive Care Unit: a systematic review protocol.

JBI Database System Rev Implement Rep 2015 Oct;13(10):123-32

1Department of Pediatrics, Aarhus University Hospital, Denmark2Danish Center of Systematic Synthesis in Nursing: an Affiliate Center of the Joanna Briggs Institute; The Center of Clinical Guidelines - Clearing House, Aalborg University Denmark3Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway4Clinical Research Unit, Randers Regional Hospital, Denmark5Department of Health Science and Technology, Aalborg University, Denmark.

Review Question/objective: The objective of this review is to identify, appraise and synthesize the best available studies exploring parents' experiences of transition when their infants are discharged from the Neonatal Intensive Care Unit (NICU).The review questions are:

Background: Giving birth to a premature or sick infant is a stressful event for parents. The parents' presence and participation in the care of the infant is fundamental to reduce this stress and to provide optimal care for both the premature or sick infant and family. A full term pregnancy is estimated to last between 37 and 40 weeks. Preterm infants born before 28 week (5.1%) are defined as extremely preterm, while those who are born between 28 to 31 weeks (10.3%) are defined as very preterm. The majority of the preterm (84.1%) are born between 32 to 37 week and may have significant medical problems requiring prolonged hospitalization.The prevalence of preterm birth is increasing worldwide. More than one in ten babies are born preterm annually. This is equal to 15 million preterm infants born globally and the second largest direct cause of deaths in children below five. The highest rates of preterm birth are in Sub-Saharan Africa and South Asia (more than 60%) and the lowest rates are in Northern Africa, Western Asia, Latin America and the Caribbean. The preterm birth rates in the developing countries vary widely and follow a different pattern than in high income countries.The preterm birth rate has increased between 1990 and 2010 with an average of 0.8% annually in almost all countries. Morbidity among critically ill newborn and preterm infants vary widely from no late effects to severe complications, such as visual or hearing impairment, chronic lung disease, growth failure in infancy and specific learning impairments, dyslexia and reduced academic achievement. Full term infants may also experience significant health problems requiring neonatal intensive care. The most common reasons for a full term infant to be admitted to a NICU after birth are temperature instability, hypoglycemia, respiratory distress, hyperbilirubinemia and neonatal mortality. Admission of a full term newborn infant from home within the first four weeks after birth is due to jaundice, dehydration, respiratory complications, feeding difficulties, urinary tract infection, diarrhea and meningitis.In the last two to three decades, technological advances in neonatalogy have improved the survival rates of critically ill and preterm infants.Two major issues have influenced the design of the NICU wards: i) the increased volume of preterm infants with extremely low gestational age who need neonatalogy assistance, and ii) the impact of the parents' presence in the NICU to support the infant's development.The health status of preterm babies can have a significant impact on the family wellbeing and function. The separation between the preterm infant and the parents is a threat to the attachment and bonding process. Worldwide, there has been a paradigm shift in the NICUs over the last decade, inviting parents to be admitted together with the infant or at least to spend most of the day together with their critical ill and preterm infant in the NICU. Parental involvement increases the performing of Kangaroo Mother Care during the admission in the NICU and increases parental preparedness for discharge to home. This change prepares the parents to take over tasks such as nurturing and feeding. The parents are the most important caregivers for the infant during the admission in the NICU and their co-admission increases the bonding and prepare the parents for the transition discharged to home.Family centered care (FCC) based on a partnership between families and professionals is described as essential in current research on neonatal care. Family centered care is facilitated by parental involvement, communication based on mutuality and respect, and unrestricted parental presence in the NICU. According to Mikkelsen and Frederiksen, the central attribute of FCC is partnership with the core value of mutuality and common goals.A NICU is a high-tech setting where highly specialized professionals care for premature or critically ill infants. During the infants' hospitalization, the relationship between parents and nurses evolves through an interchange of roles and responsibilities. However, this collaboration is challenging due to a discrepancy between parents' and nurses' expectations of their roles.To facilitate parents' skin-to-skin contact and involvement in their infant's care, NICUs are now redesigned to facilitate parents' "24-hour" presence, also called "rooming-in". Seporo et al. describes several benefits with "rooming-in" the NICUs. Staying in the same room increases infants' and parents' possibility for "skin-to-skin care". This improves the infant's sleep time and temperature regulation, decreased crying and need for oxygen, increases parental confidence and positive infant-parent interaction. Parents' experience of "skin-to-skin care" and "rooming in" may help parents to be acquainted with their infant and thus prepare for the transition to home. However, despite these positive effects of rooming-in, some negative effects, e.g. less sleep and lack of privacy, have been described by parents who have stayed with their child in a pediatric unit.The hospitalization may challenge the normal attachment process and parents' confidence as caregivers; parents' preparation for bringing the infant home is thus essential. The infant's discharge from the NICU is experienced as a moment of mixed feelings. Going home is a happy event, but at the same time it is combined with parental anxiety. Parents' pervasive uncertainty, medical concerns and adjustment to the new parental and partner-adjustment role are common concerns. To make parents confident and prepared for taking their infant home tailored information, guidance and hands-on experience caring for their infant before discharge is crucial.During the literature research we became aware of a systematic narrative review protocol by Parascandolo et al.'s concerning nurses', midwives', doctors' and parents' experiences of the preterm infants' discharge to home. The aim of our comprehensive review is to perform a metasynthesis on parents' perspectives and their experiences of transition from discharge from NICU to home. We will include qualitative primary studies to offer a deeper understanding of the parent perspective.
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http://dx.doi.org/10.11124/jbisrir-2015-2287DOI Listing
October 2015

Parental experiences of early postnatal discharge: A meta-synthesis.

Midwifery 2015 Oct 13;31(10):926-34. Epub 2015 Jul 13.

Section for Nursing, Department of Public Health, Aarhus University, Hoegh-Guldbergs Gade 6A, 8000 Aarhus C, Denmark. Electronic address:

Objective: the aim of this study was to investigate new parents׳ experiences of early postnatal discharge.

Design: a meta-synthesis including 10 qualitative studies was conducted using Noblit and Hare׳s method of meta-synthesis development.

Setting: qualitative studies performed in western countries from 2003-2013 were included.

Participants: the 10 included studies involved 237 mothers and fathers, first time parents as well as multiparous.

Findings: we identified four overlapping and mutually dependent themes reflecting the new parents׳ experiences of early postnatal discharge: Feeling and taking responsibility; A time of insecurity; Being together as a family; and Striving to be confident. The mothers׳ and fathers׳ experiences of responsibility, security and confidence in their parental role, were positively influenced by having the opportunity to be together as a family, receiving postnatal care that included both parents, having influence on time of discharge, and getting individualised and available support focused on developing and recognising their own experiences of taking care of the baby.

Conclusions And Implications For Practice: the new parents׳ experiences of early discharge and becoming a parent were closely related. Feeling secure and confident in the parental role was positively or negatively influenced by the organisation of early discharge. This underscores the importance of the way health professionals support new mothers and fathers at early postnatal discharge.
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http://dx.doi.org/10.1016/j.midw.2015.07.004DOI Listing
October 2015

Using Sandelowski and Barroso's Meta-Synthesis Method in Advancing Qualitative Evidence.

Qual Health Res 2016 Feb 20;26(3):320-9. Epub 2015 Mar 20.

Aalborg University, Aalborg, Denmark.

The purpose of this article was to iteratively account for and discuss the handling of methodological challenges in two qualitative research syntheses concerning patients' experiences of hospital transition. We applied Sandelowski and Barroso's guidelines for synthesizing qualitative research, and to our knowledge, this is the first time researchers discuss their methodological steps. In the process, we identified a need for prolonged discussions to determine mutual understandings of the methodology. We discussed how to identify the appropriate qualitative research literature and how to best conduct exhaustive literature searches on our target phenomena. Another finding concerned our status as third-order interpreters of participants' experiences and what this meant for synthesizing the primary findings. Finally, we discussed whether our studies could be classified as metasummaries or metasyntheses. Although we have some concerns regarding the applicability of the methodology, we conclude that following Sandelowski and Barroso's guidelines contributed to valid syntheses of our studies.
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http://dx.doi.org/10.1177/1049732315576493DOI Listing
February 2016

Face validity and inter-rater reliability of the Danish version of the modified Yale Preoperative Anxiety Scale.

Dan Med J 2014 Jun;61(6):A4853

Anæstesiologisk-Intensiv Afdeling, Aarhus Universitshospital, Brendstrupgårdsvej 100, 8200 Aarhus N, Denmark.

Introduction: Preoperative anxiety is common in children and it is associated with an adverse post-operative outcome. The modified Yale Preoperative Anxiety Scale (m-YPAS) was developed to assess preoperative anxiety in children. The purpose of this study was to translate and adapt the m-YPAS to Danish cultural and linguistic conditions and to test its face validity and inter-rater reliability in a clinical setting.

Material And Methods: Translation was done in accordance with the WHO guidelines. Face validity and linguistic challenges were resolved in a focus group with five nurse anaesthetists. Inter-rater reliability for the subscales in the m-YPAS was determined at two different time points by using weighted kappa (κw) statistics, whereas agreement on the overall weighted scores was calculated using the intraclass correlation coefficient (ICC). The inter-rater reliability test was done by a paediatric anaesthesiologist consultant, a psychiatrist and the first author.

Results: The Danish version of the m-YPAS was considered suitable and its face validity was satisfactory. Inter-rater reliability analysis revealed that inter-observer agreement among three independent raters was good (induction 1: κw: 0.63-0.98, ICC = 0.92; induction 2: κw: 0.72-0.96, ICC = 0.92).

Conclusion: Standardised and validated assessment tools are needed to evaluate interventions to reduce preoperative anxiety in children. A Danish version of the m-YPAS now exists, and preliminary testing has demonstrated a satisfactory face validity and inter-rater reliability.

Funding: The study was supported by grants from TrygFonden (Grant number: j.no.7-11-1292).

Trial Registration: The Danish Data Protection Agency, the Central Denmark Region, has approved the study (j.no.: 2007-58-0010).
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June 2014

Development of clinically meaningful complex interventions - the contribution of qualitative research.

Pflege 2013 Jun;26(3):207-14

Department of Pediatric, Aarhus University Hospital, Aarhus, Denmark.

The debate about the "right" methods and designs for nursing research is on-going. According to international surveys, studies on the effectiveness and safety of nursing interventions are rare. Since nursing practice deals daily with interventions, nurses ostensibly expose hospital patients and nursing home residents frequently to unproven therapeutic and preventive nursing interventions. Nursing interventions are predominately of a complex nature, consisting of several components depending on and interacting with each other and their complex contextual factors. Thus, evaluation studies are often challenging and need especially careful development, ambitious designs and systematic evaluations. The UK Medical Research Council (MRC) has proposed a framework, where qualitative and quantitative research rely on each other in order to develop theory-based complex interventions, prepare and conduct their optimal delivery, explain how the interventions work and which conditions contributed in case they did not work. The present essay outlines the points where qualitative research contributes towards the development and evaluation of complex interventions. First, the UK MRC framework is introduced, and secondly it is illustrated where qualitative research should necessarily be located using examples from a handful of qualitative studies. Future clinically meaningful and implementable nursing interventions should best be developed by research groups with both excellent qualitative and quantitative research skills.
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http://dx.doi.org/10.1024/1012-5302/a000292DOI Listing
June 2013

A qualitative meta-synthesis of patients' experiences of intra- and inter-hospital transitions.

J Adv Nurs 2013 Aug 20;69(8):1678-90. Epub 2013 Mar 20.

Department of Public Health, Aarhus University, Horsens Hospital Research Unit, Horsens, Denmark.

Aim: To aggregate, interpret and synthesize findings from qualitative studies of patients' experiences on being transferred/in transition from one hospital to another or from one ward to another.

Background: Studies about patients' experiences of transfer focused on concepts such as transfer stress, transfer anxiety, and translocation syndrome; however, a meta-synthesis on experiences of transition across different patient populations was lacking.

Design: The meta-synthesis approach was based on the guidelines by Sandelowski and Barroso.

Data Source: Six electronic databases were searched for articles published between the years 1999-2011, based on the target phenomenon: patients' experiences of transition after transfer between hospitals or units. Reference lists of included articles were screened for eligible papers.

Review Methods: Data were analysed into meta-summary and meta-synthesis. The qualitative content analysis process started with a search for common themes, concepts, and metaphors.

Results: Fourteen qualitative studies were included. Three main categories were identified: transfer as unpredictable, scary and stressful; transfer as recovery and relief; and transfer as sliding into insignificance. The meta-synthesis showed patients' experiences of transitions as critical events where nurses need to focus on patient outcome of transfer as safe, predictable, and individual.

Conclusion: It was difficult for patients to leave their experiences behind when feeling unimportant. Evidence existed for clinical nurses to continue the development of care quality and safety for patients in transfer/transition. Intervention studies and policy development to improve transfers and transitions for patients are recommended.
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http://dx.doi.org/10.1111/jan.12134DOI Listing
August 2013

Adolescents' and young adults' transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis.

Int J Nurs Stud 2014 Jan 12;51(1):123-35. Epub 2013 Mar 12.

Department of Health and Nursing Science, Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway. Electronic address:

Objectives: The objective of this study was to synthesize qualitative studies of how adolescents and young adults with chronic diseases experience the transition from paediatric to adult hospital care.

Design: The review is designed as a qualitative metasynthesis and is following Sandelowski and Barroso's guidelines for synthesizing qualitative research.

Data Sources: Literature searches were conducted in the databases PubMed, Ovid, Scopus, Cumulative Index to Nursing and Allied Health Literature (CINAHL), ISI Web of Science, and Nordic and German databases covering the period from 1999 to November 2010. In addition, forward citation snowball searching was conducted in the databases Ovid, CINAHL, ISI Web of Science, Scopus and Google Scholar.

Review Methods: Of the 1143 records screened, 18 studies were included. Inclusion criteria were qualitative studies in English, German or Nordic languages on adolescents' and young adults' transition experiences when transferring from paediatric to adult care. There was no age limit, provided the focus was on the actual transfer process and participants had a chronic somatic disease. The studies were appraised as suitable for inclusion using a published appraisal tool. Data were analyzed into metasummaries and a metasynthesis according to established guidelines for synthesis of qualitative research.

Results: Four themes illustrating experiences of loss of familiar surroundings and relationships combined with insecurity and a feeling of being unprepared for what was ahead were identified: facing changes in significant relationships, moving from a familiar to an unknown ward culture, being prepared for transfer and achieving responsibility.

Conclusions: Young adults' transition experiences seem to be comparable across diagnoses. Feelings of not belonging and of being redundant during the transfer process are striking. Health care professionals' appreciation of young adults' need to be acknowledged and valued as competent collaborators in their own transfer is crucial, and may protect them from additional health problems during a vulnerable phase. Further research including participants across various cultures and health care systems is needed.
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http://dx.doi.org/10.1016/j.ijnurstu.2013.02.001DOI Listing
January 2014

The challenge of integrating justice and care in neonatal nursing.

Nurs Ethics 2012 Jan 2;19(1):80-90. Epub 2011 Dec 2.

Faculty of Health Sciences, Department of Public Health, Aarhus University, HoeghGuldbergs Gade 6A, Aarhus C, Denmark.

The aim of this study was to explore neonatal nurses' and mothers of preterm infants' experiences of daily challenges. Interviews took place asking for good, bad and challenging experiences. Data were analysed using qualitative content analysis and findings were clustered in two categories: good and challenging experiences, each containing three themes. The good experiences were: managing with success as a nurse, small things matter for mothers, and a good day anyhow for mothers and nurses. The challenging experiences were: mothering in public, being pulled between responsibilities, and adverse things stick under the nurses' skin. The study shows that small daily clinical matters become big issues and could lead to moral distress, and that nurses integrate ethics of justice and ethics of care while mothers are concerned about health and well-being of their specific infant only. The challenge for nursing to integrate fairness and sensitive care in family-oriented neonatal care is discussed.
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http://dx.doi.org/10.1177/0969733011412101DOI Listing
January 2012

Walking the line between the possible and the ideal: lived experiences of neonatal nurses.

Intensive Crit Care Nurs 2010 Dec 22;26(6):307-13. Epub 2010 Sep 22.

Department of Nursing Science, School of Public Health, Aarhus University, Aarhus, Denmark.

Objective: To investigate the lived experiences of neonatal nurses, that is, what it is like to be a neonatal nurse after developmental care is introduced in the unit.

Methods: The study was designed as a qualitative interview study with a hermeneutic-phenomenological approach. Participants were seven neonatal nurses working in an 18-bed level 2 and 3 neonatal unit at a tertiary university hospital in Denmark. Developmental care was recently introduced in the unit, parents spend many hours a day with their baby and stay overnight in guestrooms at the hospital.

Results: The essential theme of the phenomenon being a neonatal nurse is found to be 'walking the line between the possible and the ideal'. Five themes illuminate this essence. They are: 'being attentive to the infant and the mother-infant dyad', 'the body tells', 'time is everything', 'working in a quiet and caring, crowded and distressing space', and 'teamwork - demanding or smooth and helpful'.

Conclusion: Introducing developmental care in a neonatal unit changes neonatal nurses' experiences of caring for infants and mother-infant dyads. The meaning of body, time, space and relationships are decisive and deserve to be included in nurses' and nurse leaders' discussion about developmental and family centred neonatal care.
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http://dx.doi.org/10.1016/j.iccn.2010.08.004DOI Listing
December 2010

Shattered expectations: when mothers' confidence in breastfeeding is undermined--a metasynthesis.

Scand J Caring Sci 2008 Dec;22(4):653-61

Department of Nursing Science, Institute of Public Health, University of Aarhus, Aarhus, Denmark.

Objectives: Why do mothers give up breastfeeding, even though breastfeeding has great importance to them? This study examines what has affected mother's confidence in breastfeeding when she gives up breastfeeding.

Method: A metasynthesis of seven studies on mothers' experiences with breastfeeding was conducted using Noblit and Hare's methodological approach.

Results: The metasynthesis shows that confidence in breastfeeding is shaped by shattered expectations and is affected on an immediate level by mothers' expectations, the network and the breastfeeding experts and on a discourse level by the discourses: breastfeeding as nature, the female body as a machine and the note of caution. Foucault's concept of discourse is used to discuss how these discourses affect mothers' confidence in breastfeeding by giving the right to speak about breastfeeding to the breastfeeding experts, by isolating the mothers who do not breastfeed and by organizing knowledge about breastfeeding in a certain way.

Conclusions: The individual mother is responsible for the success of breastfeeding and the discourses are hiding that general perceptions of breastfeeding undermines the mothers' confidence in breastfeeding and leads to shattered expectations.
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http://dx.doi.org/10.1111/j.1471-6712.2007.00572.xDOI Listing
December 2008

Mothers' experiences of having a preterm infant in the neonatal care unit: a meta-synthesis.

J Pediatr Nurs 2008 Jun;23(3):e26-36

Institute of Public Health, Department of Nursing Science, University of Aarhus, Aarhus, Denmark.

Neonatal nurses today are challenged not only to provide the best possible developmental care for a preterm infant but also to help the mother through an uncertain motherhood toward a feeling of being a real mother for her preterm baby. An increasing interest in mothers' experiences of having a preterm baby is seen. A meta-synthesis of 14 qualitative research studies on mothers' experiences of having a preterm baby in the neonatal intensive care unit, published from 2000 onward, was conducted. Noblit and Hare's methodological approach was used. The meta-synthesis revealed five metaphors that captured the mothers' experiences. These metaphors centered on reciprocal relationships that consisted of mother-baby relationship ("from their baby to my baby"), maternal development (a striving to be a real normal mother), the turbulent neonatal environment (from foreground to background), maternal caregiving and role reclaiming strategies (from silent vigilance to advocacy), and mother-nurse relationship (from continuously answering questions through chatting to sharing of knowledge). Implications of the meta-synthesis for neonatal nursing are addressed.
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http://dx.doi.org/10.1016/j.pedn.2007.02.003DOI Listing
June 2008
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