Hostname: page-component-7dd5485656-c8zdz Total loading time: 0 Render date: 2025-10-29T22:42:54.957Z Has data issue: false hasContentIssue false
  • English
  • Français

Sleep disturbance in relatives of palliative patients cared for at home

Published online by Cambridge University Press:  22 March 2012

Maria E. Carlsson
Maria E. Carlsson*
Affiliation:
Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden
*
Address correspondence and reprint requests to: Maria E. Carlsson, Department of Public Health and Caring Sciences, Uppsala University, P.O. Box 564, SE-751 22 Uppsala, Sweden. E-mail: Maria.carlsson@pubcare.uu.se
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The aim of the present pilot study was to investigate insomnia, sleep quality, and daytime sleepiness in relatives of dying patients cared for at home.

Method:

The study has a descriptive, comparative, and cross-sectional design. The sample consisted of relatives of patients cared for through palliative home care in Uppsala County on 3 specific days. Relatives completed a questionnaire consisting of demographic questions, and items from the Insomnia Severity Index (ISI), the Epworth Sleepiness Scale (ESS), and the Richard Campell Sleep Questionnaire (RCSQ).

Results:

Seventy-five relatives answered the questionnaire. The average total ISI score was 9.6, with 23% reporting moderate or severe clinical insomnia. The mean sleep duration was 6.5 hours, the mean assessed need of sleep was 8 hours, and the mean discrepancy was 1 hour. The total mean ESS score was 5.6 and only 15% of respondents reported excessive daytime sleepiness. Four percent scored very poor sleep quality, whereas 39% scored very good sleep quality (RCSQ). Two general age- and gender-related patterns were observed. Negative correlations were found between age and sleep problems, with younger relatives reporting more insomnia problems and more daytime sleepiness than did older relatives. The other general pattern was that womens' sleep quality was significantly inferior to that of men. A significant positive correlation was found between ISI and ESS, but not between RCSQ and ESS.

Significance of results:

The picture of the relatives' sleep condition is fairly complex. A minority reported clinical insomnia problems or excessive daytime sleepiness, and 73% reported getting less sleep than they wanted.

Keywords

Palliative home careRelativesInsomniaDaytime sleepiness

Information

Type
Original Articles
Information
Palliative & Supportive Care , Volume 10 , Issue 3 , September 2012 , pp. 165 - 170
Copyright
Copyright © Cambridge University Press 2012

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Article purchase

Temporarily unavailable

References

REFERENCES

Åkerstedt, T. & Gillberg, M. (1990). Subjective and objective sleepiness in the active individual. International Journal of Neuroscience, 52, 29–37.CrossRefGoogle ScholarPubMed
Axelsson, B. & Sjödén, P-O. (1998). Quality of life of cancer patients and their spouses in palliative home care. Palliative Medicine, 12, 29–39.CrossRefGoogle ScholarPubMed
Bastien, C., Vallières, A. & Morin, C. (2001). Validation of the Insomnia Severity Index as an outcome measure for insomnia research. Sleep Medicine, 2, 297–307.CrossRefGoogle ScholarPubMed
Carlsson, M. (2009). Fatigue in relatives of palliative patients. Palliative & Supportive Care, 7, 207–211.CrossRefGoogle ScholarPubMed
Carlsson, M. (2010). The significance of fatigue in relatives of palliative patients. Palliative & Supportive Care, 8, 137–142.CrossRefGoogle ScholarPubMed
Carlsson, M. & Rollison, B. (2003). A comparison of patients dying at home and patients dying at a hospice: sociodemographic factors and caregivers' experiences. Palliative & Supportive Care, 1, 33–39.CrossRefGoogle Scholar
Carter, P. (2002). Caregivers' descriptions of sleep changes and depression over time. Oncology Nursing Forum, 29, 1277–1283.CrossRefGoogle Scholar
Carter, P. (2003) Family caregivers' sleep loss and depression over time. Cancer Nursing, 26, 253–259.CrossRefGoogle ScholarPubMed
Carter, P. & Chang, B. (2000). Sleep and depression in cancer caregivers. Cancer Nursing, 23, 410–415.CrossRefGoogle ScholarPubMed
Fakhoury, W. & McCarthy, M. (1998) Can the experience of caring at home affect carers retrospective evaluation of community care services? Scandinavian Journal of Caring Sciences, 12, 179–185.CrossRefGoogle ScholarPubMed
Gibbins, J., McCoubrie, R., Kenderick, A., et al. (2009). Sleep-wake disturbances in patients with advanced cancer and their family carers. Journal of Pain and Symptom Management, 38, 860–870.CrossRefGoogle ScholarPubMed
Hearson, B. & McClement, S. (2007). Sleep disturbance in family caregivers of patients with advanced cancer. International Journal of Palliative Nursing, 13, 495–501.CrossRefGoogle ScholarPubMed
Hetta, J., Broman, J.E. & Mallon, L. (1999). Evaluation of severe insomnia in the general population implications for the management of insomnia: insomnia, quality of life and healthcare consumption in Sweden. Journal of Psychopharmacology, 13, S35–S36.CrossRefGoogle ScholarPubMed
Jo, S., Brazil, K., Lohfeld, L., et al. (2007). Caregiving at the end of life: Perspectives from spousal caregivers and care recipients. Palliative & Supportive Care, 5, 11–17.CrossRefGoogle ScholarPubMed
John, M.W. (1991). A new method for measuring daytime sleepiness: The Epworth sleepiness scale. Sleep, 14, 540–545.CrossRefGoogle Scholar
Kecklund, G. & Åkerstedt, T. (1992). The psychometric properties of the Karolinska Sleep Questionnaire. Journal of Sleep Research, 1, 113.Google Scholar
Leger, D., Guilleminault, C., Dreyfus, J., et al. (2000). Prevalence of insomnia in survey of 12,778 adults in France. Journal of Sleep Research, 9, 35–42.CrossRefGoogle Scholar
Lindberg, E., Janson, C., Gislason, T., et al. (1997). Sleep disturbances in a young adult population: Can gender differences be explained by differences in psychological status? Sleep, 20, 381–387.CrossRefGoogle Scholar
Milberg, A. & Strang, P. (2003). Meaningfulness in palliative home care: an interview study of dying cancer patients' next of kin. Palliative & Supportive Care, 1, 171–180.CrossRefGoogle ScholarPubMed
Morin, C., Le Blanc, M., Daley, M., et al. (2006). Epidemiology of insomnia: Prevalence, self-help treatments, consultations, determinants of help-seeking behaviours. Sleep Medicine, 7, 123–130.CrossRefGoogle Scholar
Ohayon, M. & Bader, G. (2010). Prevalence and correlates of insomnia in the Swedish population aged 19–75 years. Sleep Medicine, 11, 980–986.CrossRefGoogle ScholarPubMed
Ohayon, M. & Sagales, T. (2010). Prevalence of insomnia and sleep characteristics in general population of Spain. Sleep Medicine, 11, 1010–1018.CrossRefGoogle ScholarPubMed
Ohayon, M. & Smirne, S. (2002). Prevalence and consequences of insomnia disorders in the general population of Italy. Sleep Medicine, 3, 115–120.CrossRefGoogle ScholarPubMed
Ohayon, M. & Zulley, J. (2001). Correlates of global sleep dissatisfaction in the German population. Sleep, 24,780–787.Google ScholarPubMed
Rabow, M., Hauser, J. & Adams, J. (2004). Supporting family caregivers at the end of life, “they don't know what they don't know.” Journal of the American Medical Association, 28, 483–491.CrossRefGoogle Scholar
Richards, K., O'Sullivan, P. & Phillips, R. (2000). Measurement of sleep in critically ill patients. Journal of Nursing Measurement, 8,131–144.CrossRefGoogle ScholarPubMed
Rollison, B. & Carlsson, M. (2002). Evaluation of advanced home care (AHC). The next-of-kin's experiences. European Journal of Oncology Nursing, 6, 100–106.CrossRefGoogle ScholarPubMed
Savard, M.H., Savard, J., Simard, S., et al. (2005). Empirical validation of the Insomnia Severity Index in cancer patients. Psychooncology, 14, 429–441.CrossRefGoogle ScholarPubMed
Schwarz, R., Krauss, O. & Hinz, A. (2003). Fatigue in general population. Onkologie, 26, 140–144.Google ScholarPubMed
Smets, E., Garssen, B., Bonke, B., et al. (1995). The Multidimensional Fatigue Inventory (MFI): psychometric qualities of an instrument to assess fatigue. Journal of Psychosomatic Research, 39, 315–325.CrossRefGoogle ScholarPubMed
Stajduhar, K. (2003). Examining the perspectives of family members involved in the delivery of palliative care at home. Journal of Palliative Care, 19, 27–35.CrossRefGoogle ScholarPubMed