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Sleep Quality, Mood, Saliva Cortisol Response and Sense of Coherence in Parents with a Child Admitted to Pediatric Care

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Sleep Quality, Mood, Saliva Cortisol Response and Sense of Coherence in Parents with a Child Admitted to Pediatric Care Linköping University Medical Dissertations No. 1561 What about the parents? Sleep quality, mood, saliva cortisol response and sense of coherence in parents with a child admitted to pediatric care Charlotte Angelhoff Division of Nursing Sciences Department of Social and Welfare Studies Linköping University, Sweden Norrköping 2017 What about the parents? Sleep quality, mood, saliva cortisol response and sense of coherence in parents with a child admitted to pediatric care ãCharlotte Angelhoff, 2017 Cover illustration: Isabelle Angelhoff Published articles have been reprinted with the permission of the copyright holders. Printed in Sweden by LiU-Tryck, Linköping, Sweden, 2017 ISBN 978-91-7685-584-3 ISSN 0345-0082 To my family Ivo, Alexander, Paulina and Isabelle "sleep is one of the natural goods of life, beautiful in itself, like flowers, like the songs of birds. It is the touchstone of health; as the man sleepeth, so is he. Where virtue is, it is more virtuous, and where beauty is, more beautiful” J.F. Pyre, Shakespeare’s Pathos (Portrayals of sleep) Contents CONTENTS ABSTRACT ................................................................................................... 1 SVENSK SAMMANFATTNING ................................................................... 3 LIST OF PAPERS .......................................................................................... 5 ABBREVIATIONS ........................................................................................ 6 PREFACE ...................................................................................................... 7 INTRODUCTION ......................................................................................... 9 BACKGROUND ........................................................................................... 11 Families in pediatric care ...................................................................... 11 Parents with children in hospital ............................................................ 11 To become parent to a preterm infant .................................................... 12 Hospital-based home care for children .................................................. 12 Sleep ..................................................................................................... 14 Sleep physiology ..................................................................................... 14 Sleep quality ............................................................................................ 15 Mood .................................................................................................... 16 Stress .................................................................................................... 17 Stressors .................................................................................................. 17 Stress physiology ..................................................................................... 17 Saliva cortisol ......................................................................................... 19 Sleep, mood and stress in parents of children in need of medical care .. 20 Coping and sense of coherence ............................................................ 21 Health-related quality of life ................................................................ 23 Theoretical framework ......................................................................... 23 Parents’ dual roles when they care for a child ....................................... 23 Family-centered care and child-centered care ....................................... 24 Rationale for this thesis ....................................................................... 27 AIMS ........................................................................................................... 29 Contents METHODS .................................................................................................. 31 Design ................................................................................................... 31 Quantitative studies (I-II) ....................................................................... 31 Qualitative studies (III-IV) ...................................................................... 31 Participants and procedures ................................................................ 32 Participants ............................................................................................. 32 Sample size .............................................................................................. 33 Setting and procedures ........................................................................... 33 Data collection ..................................................................................... 35 Demographics ......................................................................................... 35 Questionnaires ........................................................................................ 35 Saliva cortisol ......................................................................................... 38 Interviews ................................................................................................ 39 Data analysis ....................................................................................... 40 Statistical analyses used in study I and II ............................................... 40 Further statistical analyses for the thesis ............................................... 42 Analysis of open-ended questions (I-II) .................................................. 43 Phenomenographic analysis (III-IV) ...................................................... 44 Ethical considerations .......................................................................... 46 RESULTS .................................................................................................... 49 Characteristics of the parents .............................................................. 49 Sleep and mood .................................................................................... 50 The parents’ sleep ................................................................................... 50 Nocturnal awakenings ............................................................................ 52 Mood ....................................................................................................... 53 Saliva cortisol response ........................................................................ 55 Sense of coherence ............................................................................... 56 Sleep, mood and sense of coherence ................................................... 57 Health-related quality of life ............................................................... 60 Resources to manage the situation ...................................................... 62 The importance of staying together as a family ...................................... 62 Changed routines to optimize time for sleep .......................................... 62 Support is needed for relaxation and sleep ............................................ 63 Contents Me-time influence well-being and sleep in a positive way ..................... 63 Physical activity is an important source for well-being and sleep ......... 63 DISCUSSION .............................................................................................. 65 Discussion of the results ...................................................................... 65 Being together as a family improves sleep and decreases stress ........... 65 Parents report more nocturnal awakenings and lower mood but sufficient sleep quality in the hospital ..................................................... 67 Parents are sleep-deprived before the child’s admission ....................... 69 Parents’ cortisol response when they are accommodated in a pediatric ward ........................................................................................................ 70 Parents’ sleep quality, mood and sense of coherence influence each other ........................................................................................................ 71 Methodological discussion ................................................................... 73 Study limitations ..................................................................................... 73 Validity and reliability ............................................................................ 74 Implications for nursing practice ........................................................ 76 Future research .................................................................................... 77 Conclusion ............................................................................................ 78 ACKNOWLEDGEMENTS .......................................................................... 79 REFERENCES ............................................................................................ 82 Abstract ABSTRACT Parents experience many stressful situations when their child is ill and needs medical care, irrespective of the child’s age, diagnosis or the severity of the illness. Poor sleep quality and negative mood decrease the parents’ ability to sustain attention and focus, to care for their ill child, and to cope with the challenges they face. The overall aim of this thesis was to evaluate sleep, mood, cortisol re- sponse, and sense of coherence (SOC) in parents caring for children in need of medical care,
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