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Edéll-Gustafsson, Ulla
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Publications (10 of 70) Show all publications
Angelhoff, C., Askenteg, H., Wikner, U. & Edéll-Gustafsson, U. (2018). "To Cope with Everyday Life, I Need to Sleep" - A Phenomenographic Study Exploring Sleep Loss in Parents of Children with Atopic Dermatitis.. Journal of Pediatric Nursing: Nursing Care of Children and Families, 43, E59-E65
Open this publication in new window or tab >>"To Cope with Everyday Life, I Need to Sleep" - A Phenomenographic Study Exploring Sleep Loss in Parents of Children with Atopic Dermatitis.
2018 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 43, p. E59-E65Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The whole family is affected when a child has atopic dermatitis (AD), and parents experience sleep disruption related to the child's condition leading to physical and mental exhaustion, mood swings, loss of concentration and lower job performance. This study aimed to explore and describe perceptions of sleep in parents of children <2 years old with AD, consequences of parental sleep loss, and what strategies the parents used to manage sleep loss and to improve sleep.

DESIGN AND METHODS: This qualitative interview study had an inductive and descriptive design. Twelve parents (eleven mothers and one father) participated in the study. Data analysis was performed using a phenomenographic approach.

RESULTS: Three categories of description were found: Acceptance and normalization of parental sleep loss; Changed routines and behavior to compensate for sleep loss; and Support is needed to gain sleep and manage daily life.

CONCLUSIONS: Sleep loss due to the child's AD affected the parents' emotional state, mood, well-being, cognitive function, ability to concentrate and take initiative, and sensitivity to stress and sound negatively. The parents managed their sleep loss mainly by changing their behavior and creating new routines, by taking me-time and through support from partners.

PRACTICE IMPLICATIONS: Pediatric nurses should acknowledge sleep loss in parents of small children with AD in time to prevent negative consequences, which affect the well-being of the entire family. Advice on how to improve sleep should be given early to increase the parents' understanding, make them feel safer and strengthen them in their parenthood.

Place, publisher, year, edition, pages
Elsevier, 2018
Keywords
Atopic dermatitis, Family nursing, Family-centered care, Pediatric nursing, Pediatrics
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-152216 (URN)10.1016/j.pedn.2018.07.005 (DOI)000450921100011 ()30037591 (PubMedID)
Available from: 2018-10-22 Created: 2018-10-22 Last updated: 2019-05-02
Edéll-Gustfsson, U., Angelhoff, C., Johnsson, E., Karlsson, J. & Mörelius, E.-L. (2015). Hindering and buffering factors for parental sleep in neonatal care.: A phenomenographic study. In: Joav Merrick (Ed.), Disability, Chronic Disease and Human Development: . Paper presented at The Gerry Schwartz and Heather Reisman 4th International Conference on Pediatric Chronic Diseases, Disability and Human Development: ICCD 2015 Jerusalem Israel, 20- 23 January 2015. Nova Science Publishers, Inc. (5-6)
Open this publication in new window or tab >>Hindering and buffering factors for parental sleep in neonatal care.: A phenomenographic study
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2015 (English)In: Disability, Chronic Disease and Human Development / [ed] Joav Merrick, Nova Science Publishers, Inc., 2015, no 5-6Conference paper, Oral presentation with published abstract (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.

Place, publisher, year, edition, pages
Nova Science Publishers, Inc., 2015
Keywords
sleep, parents, neonatal intensive care
National Category
Pediatrics
Identifiers
urn:nbn:se:liu:diva-117699 (URN)978-1-63483-029-4 (ISBN)
Conference
The Gerry Schwartz and Heather Reisman 4th International Conference on Pediatric Chronic Diseases, Disability and Human Development: ICCD 2015 Jerusalem Israel, 20- 23 January 2015
Available from: 2015-05-07 Created: 2015-05-07 Last updated: 2016-05-27Bibliographically approved
Edéll-Gustafsson, U., Angelhoff, C., Johnsson, E., Karlsson, J. & Mörelius, E. (2015). Hindering and buffering factors for parental sleep in neonatal care: A phenomenographic study. In: : . Paper presented at The Gerry Schwartz and Heather Reisman 4th International Conference on Pediatric Chronic Diseases, Disability and Human Development. Jerusalem, Israel (pp. 717-727). , 24
Open this publication in new window or tab >>Hindering and buffering factors for parental sleep in neonatal care: A phenomenographic study
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2015 (English)Conference paper, Oral presentation with published abstract (Other academic)
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.

Keywords
family nursing;family-centred care;neonatal intensive care;kangaroo mother care;nursing;siblings;skin-to-skin care
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-119087 (URN)10.1111/jocn.12654 (DOI)
Conference
The Gerry Schwartz and Heather Reisman 4th International Conference on Pediatric Chronic Diseases, Disability and Human Development. Jerusalem, Israel
Available from: 2015-06-09 Created: 2015-06-09 Last updated: 2016-05-27
Edéll-Gustafsson, U., Angelhoff, C., Johnsson, E., Karlsson, J. & Mörelius, E. (2015). Hindering and buffering factors for parental sleep in neonatal care. A phenomenographic study. Journal of Clinical Nursing, 24(5-6), 717-727
Open this publication in new window or tab >>Hindering and buffering factors for parental sleep in neonatal care. A phenomenographic study
Show others...
2015 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 24, no 5-6, p. 717-727Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
John Wiley & Sons, 2015
Keywords
family nursing; family-centred care; kangaroo mother care; neonatal intensive care; nursing; siblings; skin-to-skin care
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-115549 (URN)10.1111/jocn.12654 (DOI)000350354700010 ()25041598 (PubMedID)
Funder
Medical Research Council of Southeast Sweden (FORSS)Östergötland County Council
Available from: 2015-03-16 Created: 2015-03-16 Last updated: 2017-12-04
Angelhoff, C., Edéll-Gustafsson, U. & Mörelius, E. (2015). Parental mood when staying overnight at hospital with their sick child. In: : . Paper presented at 3rd NUS - NUH International Nursing Conference & 20th Joint Singapore - Malaysia Nursing Conference, Singapore, November 18-20, 2015.
Open this publication in new window or tab >>Parental mood when staying overnight at hospital with their sick child
2015 (English)Conference paper, Oral presentation with published abstract (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.

National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-127473 (URN)
Conference
3rd NUS - NUH International Nursing Conference & 20th Joint Singapore - Malaysia Nursing Conference, Singapore, November 18-20, 2015
Available from: 2016-04-27 Created: 2016-04-27 Last updated: 2016-05-27
Angelhoff, C., Edéll-Gustafsson, U. & Mörelius, E. (2015). Parents' perception of circumstances influencing their own sleep when living with a child enrolled in hospital-based home care services. In: : . Paper presented at The Gerry Schwartz and Heather Reisman 4th International Conference on Pediatric Chronic Diseases, Disability and Human Development. Jerusalem, Israel.
Open this publication in new window or tab >>Parents' perception of circumstances influencing their own sleep when living with a child enrolled in hospital-based home care services
2015 (English)Conference paper, Oral presentation with published abstract (Other academic)
National Category
Clinical Medicine
Identifiers
urn:nbn:se:liu:diva-119088 (URN)
Conference
The Gerry Schwartz and Heather Reisman 4th International Conference on Pediatric Chronic Diseases, Disability and Human Development. Jerusalem, Israel
Available from: 2015-06-09 Created: 2015-06-09 Last updated: 2016-05-27
Marklund-Bau, H., Spångberg, A. & Edéll-Gustafsson, U. (2015). Sleep and partner-specific quality of life in partners of men with lower urinary tract symptoms compared with partners of men from the general population.. Scandinavian journal of urology, 49(4), 321-328
Open this publication in new window or tab >>Sleep and partner-specific quality of life in partners of men with lower urinary tract symptoms compared with partners of men from the general population.
2015 (English)In: Scandinavian journal of urology, ISSN 2168-1805, E-ISSN 2168-1813, Vol. 49, no 4, p. 321-328Article in journal (Refereed) Published
Abstract [en]

The aims of this study were to examine differences between partners of men with lower urinary tract symptoms (LUTS) suggestive of benign prostatic obstruction (BPO) and partners of men from the population regarding sleep and two aspects of quality of life, partner-specific quality of life and health-related quality of life (HRQoL), and to identify factors related to the partner-specific quality of life and the parameter sleep efficiency. Materials and methods. The design was descriptive and comparative. The subjects were partners of men with LUTS suggestive of BPO (n = 126) and partners of randomly selected men from the general population (n = 131). Self-administered questionnaires about demography, comorbidity, sleep, sexuality, partner-specific quality of life and HRQoL were used. Results. Partners of men with LUTS suggestive of BPO were significantly more affected in all variables measuring partner-specific quality of life compared with partners from the population. The most impaired aspects were compassion and worry about an operation or cancer. In logistic regression, the only explanatory factors were having a partner belonging to the LUTS group for impaired partner-specific quality of life and having a bed partner for high sleep efficiency. There were no significant differences between the two groups regarding the quantity and quality of sleep or the HRQoL. Conclusions. The partner-specific quality of life was impaired in partners of men with LUTS suggestive of BPO. Sleep and HRQoL did not differ between partners of men with LUTS and partners from the population.

Place, publisher, year, edition, pages
Informa Healthcare, 2015
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-116341 (URN)10.3109/21681805.2014.990052 (DOI)000359170200010 ()25515951 (PubMedID)
Available from: 2015-03-26 Created: 2015-03-26 Last updated: 2017-12-04
Angelhoff, C., Edéll-Gustfsson, U. & Mörelius, E. (2015). Sleep of Parents Living With a Child Receiving Hospital-Based Home Care: A Phenomenographical Study.. Nursing Research, 64(5), 372-380
Open this publication in new window or tab >>Sleep of Parents Living With a Child Receiving Hospital-Based Home Care: A Phenomenographical Study.
2015 (English)In: Nursing Research, ISSN 0029-6562, E-ISSN 1538-9847, Vol. 64, no 5, p. 372-380Article 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
Keywords
children, chronic illness, home care services, parents, qualitative research, sleep
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-121085 (URN)10.1097/NNR.0000000000000108 (DOI)000361361000006 ()26325279 (PubMedID)
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: 2017-12-04Bibliographically approved
Johansson, A., Adamson, A., Ejdeback, J. & Edéll-Gustafsson, U. (2014). Evaluation of an individualised programme to promote self-care in sleep-activity in patients with coronary artery disease - a randomised intervention study. Journal of Clinical Nursing, 23(19-20), 2822-2834
Open this publication in new window or tab >>Evaluation of an individualised programme to promote self-care in sleep-activity in patients with coronary artery disease - a randomised intervention study
2014 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 19-20, p. 2822-2834Article in journal (Refereed) Published
Abstract [en]

Aims and objectives. To evaluate the effectiveness of an individualised programme to promote self-care in sleep-activity in patients with coronary artery disease. Background. Recent scientific findings have shown that low physical exercise and stress interfere with coronary artery disease patients sleep quality and sleep efficiency independent of gender, age and co-morbidity. Design. A randomised pretest-post-test control design. Methods. Forty-seven patients who had undergone a coronary revascularisation procedure and/or pharmacological treatment three to seven weeks earlier at a general hospital were randomised to either an intervention group or a control group. Data collection was carried out by questionnaires, a study-specific sleep diary and actigraphy registration for 10 consecutive 24-hour periods, with a follow-up after three to four months. The intervention group underwent a nurse-led individualised education programme to promote self-care of sleep-activity. Sleep habits and sleep-related lifestyle together formed the basis for setting up individual goals together with the nurse. Individual advice on physical training, relaxation exercise and a CD-based relaxation programme was provided by a physiotherapist. Both groups received a brochure about sleep and stress. Results. At a three-to four-month follow-up, the main improvements were seen in the intervention group regarding sleep quality, sleep duration and sleep efficiency in the sleep diary and sleep efficiency in actigraphy. Statistical improvements in health-related quality of life were revealed. This was not so obvious in the control group. Conclusions. An individualised intervention programme to promote self-care of sleep-activity including relaxation in patients with coronary artery disease led by a nurse may improve sleep quality. However, a longitudinal study to promote self-care in sleep-activity should be performed using a larger sample and multiple sites with continuous follow-ups to determine whether any positive effects remain stable over time. Relevance to clinical practice. Implementation of a multiprofessional individualised programme to promote self-care of sleep-activity including relaxation based on patients needs, supported by a healthcare team and led by nurses, is important in clinical practice.

Place, publisher, year, edition, pages
Wiley, 2014
Keywords
actigraphy; control group; coronary artery disease; health; nursing; pretest-post-test design; self-care; sleep diary; sleep-activity
National Category
Clinical Medicine Nursing
Identifiers
urn:nbn:se:liu:diva-112484 (URN)10.1111/jocn.12546 (DOI)000343857700013 ()24479893 (PubMedID)
Note

Funding Agencies|Skaraborg Hospital, Sweden [VGSKAS-9122]; Skaraborg Institute, Sweden [07/1036]

Available from: 2014-11-28 Created: 2014-11-28 Last updated: 2017-12-05
Angelhoff, C., Edéll-Gustafsson, U. & Mörelius, E. (2014). Perceptions of sleep by parents of children in hospital organized home-care. In: : . Paper presented at Barnveckan 2014, 7-11 of April 2014, Malmö,Sweden.
Open this publication in new window or tab >>Perceptions of sleep by parents of children in hospital organized home-care
2014 (English)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Clinical Medicine
Identifiers
urn:nbn:se:liu:diva-119090 (URN)
Conference
Barnveckan 2014, 7-11 of April 2014, Malmö,Sweden
Available from: 2015-06-09 Created: 2015-06-09 Last updated: 2016-05-04
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