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  • 1.
    Angelhoff, Charlotte
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Edéll-Gustafsson, Ulla
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Mörelius, Evalotte
    Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping. Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Parental mood when staying overnight at hospital with their sick child2015Conference paper (Refereed)
    Abstract [en]

    Parental mood when staying overnight at hospital with their sick child

    Objective

    to describe mood in parents, staying with their sick children overnight at the hospital.

    Methodology

    A descriptive design, including 75 parents staying overnight at hospital with their sick child, was used. The parents filled out Mood-scale the morning after staying overnight at the hospital. The Mood-scale is a validated and reliable self-administered instrument measuring six dimensions of mood; control, calmness, social orientation, pleasantness, activation, and extraversion (Sjöberg L, 1979). The study is a part of a larger project, with focus on mood, stress and sleep in parents staying with their sick children overnight at the hospital.

    Results

    The result will describe how parents report their total mood and how they report the different dimensions when they stay with their sick children overnight at the hospital. A comparison will be made between the parent´s mood and gender and the child´s age. Data is under analysis and will be presented as preliminary data.

     

    Conclusion

    According to UNICEF Convention on the Rights of the Child, children in hospital have the right to have their parents with them at all times and parents should be offered accommodation and be encouraged to stay. However, the hospital environment, in combination with having a sick child, might affect the parent´s mood, which in turn might affect the ability to handle the situation and the child´s care. Therefore it is of importance to study parental mood and find ways to help the families during their hospital stay.

  • 2.
    Angelhoff, Charlotte
    et al.
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Arts and Sciences.
    Edéll-Gustafsson, Ulla
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Mörelius, Evalotte
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Perceptions of sleep quality and stress by parents of children enrolled in hospital organized home-care2013In: Nordic Advances in Health Care Sciences Research, Lund, 2013: Abstract book / [ed] Gerd Ahlström, Lena von Koch, 2013, p. 56-56Conference paper (Other academic)
    Abstract [en]

    Introduction

    Caring for a sick child creates much greater demands for parents than those associated with raising a healthy child. Parents of chronically ill children reports higher levels of parental stress as a consequence of the substantial social, emotional and personal demands associated with caring. Sleep quality is an important aspect of wellbeing and is strongly related to stress and quality of life. In some Swedish counties families are offered hospital organized home-care for sick children. Caring for a child at home gives the family the opportunity to be together in an environment they know well and where they can feel comfortable and secure. On the other hand it includes several sleep disturbances during the night which affects the ability to handle the situation and support their child. No other study is found about how parents sleep when their child is enrolled in hospital organized home-care.

     

    Aim

    To explore parents’ perceptions of sleep quality and stress when they sleep at home with a child enrolled in hospital organized home-care.

     

    Material

    Fifteen parents (11 mothers and 4 fathers) with children enrolled in hospital organized home-care from one university hospital and one general hospital in South-eastern Sweden were included. The children ranged in age 0-12 years.

     

    Method

    Parents were interviewed with open-ended questions. Data was analysed with a phenomenographic method according to Marton and Both.

     

    Results

    Four descriptive categories in the phenomenon of parents’ perceptions of sleep quality and stress when they sleep at home with a child enrolled in hospital organized home-care were identified; Routines helps to manage the situation, Time for oneself and the partner, Feelings of isolation and Need of support

     

    Conclusion

    Sleep is important for the parents in several aspects. They are in a stressful situation with high demands both from the society and from themselves and there is often a lack of support from relatives and friends. Nurses need to acknowledge and promote parents’ sleep when they care for their sick children at home and support them in the caregiving.

  • 3.
    Angelhoff, Charlotte
    et al.
    Linköping University, Department of Social and Welfare Studies.
    Edéll-Gustfsson, Ulla
    Linköping University, Department of Medical and Health Sciences.
    Mörelius, Evalotte
    Linköping University, Department of Social and Welfare Studies.
    Parents´ perception of circumstances influencing their own sleep when living with a child enrolled in hospital-based home care services2015In: The Gerry Schwartz and Heather Reisman 4th International Conference on Pediatric Chronic Diseases, Disability and Human Development: ICCD 2015 Jerusalem Israel / [ed] Kerem, Eitan, Jerusalem: Paragon Israel , 2015Conference paper (Refereed)
    Abstract [en]

    Background: Caring for a sick child creates great demands for the parents. Sleep is an important aspect of wellbeing and is strongly related to stress and quality of life. Caring for a child at home gives the family the opportunity to be together in a familiar environment, but includes several sleep disturbances during the night which affects the ability to handle the situation.

    Aim: To describe parents’ perceptions of circumstances influencing their own sleep, living with a child enrolled in Hospital-Based Home Care Services.

    Method: This is a phenomenographic study with an inductive, exploratory design, using semi-structured interviews with main and follow-up questions. Fifteen parents with children enrolled in Hospital-Based Home Care Services were included.

    Findings: The outcome space consists of four descriptive categories: s; Sleep influence mood and mood influences sleep, Support and safeness influence sleep, The child´s needs and routines influence sleep, and Me-time influences sleep.

    Discussion: Parents to children in Hospital-Based Home Care Services perceive their sleep differently depending on how safe they feel with the situation. Troubling thoughts, bedtime worries, anxiety and stress affect sleep negatively. Safeness is prerequisite for sleep. Shared responsibility and social support help the parents to cope with the daily life and thus facilitate sleep. The parents adjust their routines after the cild´s needs to find time for sleep and relaxation. Me-time and physical activity was perceived as important tools to improve coping and sleeping.

  • 4.
    Angelhoff, Charlotte
    et al.
    Linköping University, Department of Social and Welfare Studies.
    Edéll-Gustfsson, Ulla
    Linköping University, Department of Medical and Health Sciences.
    Mörelius, Evalotte
    Linköping University, Department of Social and Welfare Studies.
    Perceptions of sleep by parents of children in hospital organized home-care2014In: Programbok Barnveckan 2014, Malmö, 7-11 april,  2014, 2014, p. 33-33Conference paper (Refereed)
    Abstract [en]

    Introduction

    Caring for a sick child creates great demands for the parents. Sleep is an important aspect of wellbeing and is strongly related to stress and quality of life. Caring for a child at home gives the family the opportunity to be together in a familiar environment. On the other hand it includes several sleep disturbances during the night which affects the ability to handle the situation.

     

    Aim

    To explore parents’ perceptions of sleep living with a child enrolled in hospital-organized home-care.

     

    Material

    Fifteen parents with children enrolled in hospital-organized home-care were included.

     

    Method

    Interviews with open-ended questions, analysed with a phenomenographic method.

     

    Results

    Four descriptive categories were identified; Anxiety, stress and demands affects sleep negatively’, ‘When I get support I feel safe’, ‘Routines optimizes time for sleep’, and ‘Time for oneself is important for relaxation’

     

    Conclusion

    Sleep is important for the parents in several aspects. They are in a stressful situation with high demands both from the society and from themselves and there is often a lack of support from relatives and friends. Nurses need to acknowledge and promote parents’ sleep when they care for their sick children at home and support them in the caregiving.

  • 5.
    Angelhoff, Charlotte
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care.
    Edéll-Gustfsson, Ulla
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Mörelius, Evalotte
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Sleep of Parents Living With a Child Receiving Hospital-Based Home Care: A Phenomenographical Study.2015In: Nursing Research, ISSN 0029-6562, E-ISSN 1538-9847, Vol. 64, no 5, p. 372-380Article in journal (Refereed)
    Abstract [en]

    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.

  • 6.
    Edell-Gustafsson, Ulla
    et al.
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Angelhoff, Charlotte
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Johnsson, Ewa
    Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    Karlsson, Jenny
    Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    Mörelius, Evalotte
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
    Parents’ perceptions of sleeping in a neonatal intensive care unit2013Conference paper (Other academic)
    Abstract [en]

    Introduction

    Sleep is important for mental and emotional health. For parents staying in the hospital with their preterm and/or sick infant, lack of sleep may affect their ability to handle the situation, supporting their infant, and participate in decision-making. Moreover, when a child is born preterm, parents may experience stress that potentially affects their ability to interact and bond with the infant.

     

    Purpose

    To describe parents’ perceptions of what it is like to sleep in a neonatal intensive care unit (NICU) in a room nearby or in the same room as their infant.

     

    Material

    Twelve parents (eight mothers and four fathers) of infants born between week 29 and 36, in three different hospitals, were included. Eight of the parents slept in the same room as their infants and four parents slept in parents’ rooms in the NICU.  

     

    Methods

    Parents were interviewed with open-ended questions. Data was analysed with a phenomenographic method according to Marton and Both.

     

    Results

    Five descriptive categories in the phenomenon of parents’ perception of how it is to sleep  in a NICU  were  identified; Transition to parenthood, How parents perceive and manage their tiredness, A feeling of being out of control, Different forms of support and Environment.

     

    Conclusions

    Parents in the NICU are vulnerable, in a stressful situation, with an infant in need of neonatal intensive care. At the same time they are going through a complicated transition to parenthood. Hence sleep is important for the parents in several aspects, and NICU staff needs to acknowledge and promote parents’ sleep. 

  • 7.
    Edéll-Gustafsson, Ulla
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Angelhoff, Charlotte
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care.
    Johnsson, Ewa
    Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Karlsson, Jenny
    Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Mörelius, Evalotte
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Hindering and buffering factors for parental sleep in neonatal care. A phenomenographic study2015In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 24, no 5-6, p. 717-727Article in journal (Refereed)
    Abstract [en]

    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.

  • 8.
    Edéll-Gustfsson, Ulla
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Angelhoff, Charlotte
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Johnsson, Ewa
    Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Karlsson, Jenny
    Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Mörelius, Eva-Lotta
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Hindering and buffering factors for parental sleep in neonatal care.: A phenomenographic study2015In: Disability, Chronic Disease and Human Development / [ed] Joav Merrick, Nova Science Publishers, Inc., 2015, no 5-6Conference paper (Other academic)
    Abstract [en]

    Background

    Parents experience many stressful situations when their newborn infant is preterm and/or sick. This affects bonding. By developing more family-centered care units with single-family rooms, parents are given the opportunity to stay and care for their newborn infant(s) twenty-four hours a day. Lack of sleep may affect the new parents’ ability to handle the situation.

    Aim

    To explore and describe how parents of preterm and/or sick infants in neonatal care perceive their sleep.

    Methods This is a phenomenographic study with an inductive, exploratory design. Semi-structured interviews were conducted with twelve parents of infants in neonatal care. Data was analysed to describe variations of the phenomenon.

    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 is an important source for recovery, relaxation and sleep, and should be encouraged by the nurse. The parents also mentioned the importance of being together. To have 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. Improved parental sleep in the neonatal care may help the families to cope with the situation, and facilitate problem-solving, emotional regulation, and the transition to parenthood.

  • 9.
    Mörelius, Evalotte
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Angelhoff, Charlotte
    Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Eriksson, Jennie
    Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Olhager, Elisabeth
    Linköping University, Department of Clinical and Experimental Medicine, Pediatrics. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center of Paediatrics and Gynaecology and Obstetrics, Department of Paediatrics in Linköping.
    Time of initiation of skin-to-skin contact in extremely preterm infants in Sweden2012In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 101, no 1, p. 14-18Article in journal (Refereed)
    Abstract [en]

    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.

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