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Sleep of Parents Living With a Child Receiving Hospital-Based Home Care: A Phenomenographical Study.
Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
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.ORCID iD: 0000-0002-3256-5407
2015 (English)In: Nursing Research, ISSN 0029-6562, E-ISSN 1538-9847, Vol. 64, no 5, 372-380 p.Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
Lippincott-Ravn Publisher , 2015. Vol. 64, no 5, 372-380 p.
Keyword [en]
children, chronic illness, home care services, parents, qualitative research, sleep
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-121085DOI: 10.1097/NNR.0000000000000108ISI: 000361361000006PubMedID: 26325279OAI: oai:DiVA.org:liu-121085DiVA: diva2:851600
Projects
Parents’ stress and sleep quality when their children need medical care
Funder
Östergötland County CouncilMedical Research Council of Southeast Sweden (FORSS)
Available from: 2015-09-07 Created: 2015-09-07 Last updated: 2017-04-10Bibliographically approved
In thesis
1. What about the parents?: Sleep quality, mood, saliva cortisol response and sense of coherence in parents with a child admitted to pediatric care
Open this publication in new window or tab >>What about the parents?: Sleep quality, mood, saliva cortisol response and sense of coherence in parents with a child admitted to pediatric care
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Parents experience many stressful situations when their child is ill and needs medical care, irrespective of the child’s age, diagnosis or the severity of the illness. Poor sleep quality and negative mood decrease the parents’ ability to sustain attention and focus, to care for their ill child, and to cope with the challenges they face.

The overall aim of this thesis was to evaluate sleep, mood, cortisol response, and sense of coherence (SOC) in parents caring for children in need of medical care, and to identify factors that may influence parents’ sleep.

This thesis includes four original studies; two of these are quantitative, prospective, descriptive and comparative studies including parents (n=82) accommodated in six pediatric wards with their ill child, using questionnaires and sleep logs to measure sleep, mood and SOC, and saliva cortisol to measure cortisol response. A follow-up was performed four weeks later at home, after hospital discharge. The other two studies are qualitative, inductive and explorative interview studies, including parents (n=12) staying overnight with their preterm and/or ill infant in three neonatal intensive care units, and parents (n=15) with a child receiving hospital-based home care in two pediatric outpatient clinics. The interviews were analyzed with a phenomenographic method.

Being together with one’s family seems beneficial for sleep and may decrease stress. The ability to stay with the child, in the hospital or at home, was highly appreciated by the parents. When caring for a child with illness, parents’ sleep quality was sufficient in the hospital; however, sleep quality improved further (p<0.05) at home after discharge. The parents reported frequent nocturnal awakenings in the hospital caused by the child, medical treatment and hospital staff. Concern and anxiety about the child’s health, and uncertainty about the future were stressors affecting the parents’ sleep and mood negatively. The parents had lower (p=0.01) morning awakening cortisol levels in the pediatric ward compared to at home, and parents accommodated for more than one night had lower (p<0.05) post-awakening cortisol levels compared to parents staying their first night.

The findings of this thesis conclude that being together as a family is important for the parents’ sleep. The ability to be accommodated in the hospital and gather the family around the child may have given the parents time for relaxation and recovery, that in turn may lead to a less stressful hospital stay. When it is beneficial for the child, the whole family should be included in the pediatric care. Moreover, pediatric nurses must acknowledge parents’ sleep, in hospital and at home. Medical treatment and care at night should be scheduled and sleep promoted for the parents in order to maintain health and well-being in the family.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2017. 99 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1561
National Category
Nursing Pediatrics Psychiatry Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-136442 (URN)10.3384/diss.diva-136442 (DOI)9789176855843 (ISBN)
Public defence
2017-04-21, K1, Kåkenhus, Campus Norrköping, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Funder
Region ÖstergötlandMedical Research Council of Southeast Sweden (FORSS)
Note

The electronic version of the thesis is a corrected version of the printed thesis.

This thesis has also been funded by Barnklinikens 60-årsfond, Filip SchelinsStiftelse, Riksföreningen för barnsjuksköterskor and Synskadades Riksförbund (Lyckopenningen).

Available from: 2017-04-10 Created: 2017-04-10 Last updated: 2017-04-10Bibliographically approved

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Angelhoff, CharlotteEdéll-Gustfsson, UllaMörelius, Evalotte
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