title: Sleep among bereaved caregivers of patients admitted to hospice: a 1-year longitudinal pilot study.
abstract: OBJECTIVE
  This pilot study aimed to describe the sleep of partners and other family caregivers prior to and in the first year after a hospice patient's death. The study also evaluated the feasibility of the study protocol and determined the effect sizes in preparation for a full-scale study.
  
  
  METHODS
  The pilot study used a longitudinal, descriptive and comparative design.
  
  
  METHODS
  Participants included primary family caregivers of patients admitted to a hospice in Oslo, Norway.
  
  
  METHODS
  Caregiver sleep was measured subjectively with the Pittsburgh Sleep Quality Index (PSQI) and objectively using wrist actigraphy for 4 nights and 3 days at three different times: during the hospice stay, and at 6 and 12 months after the patient's death.
  
  
  RESULTS
  16 family caregivers (10 partners and 6 other family members) completed the 1-year study protocol. Overall, sleep quality and quantity were stable over time and at each assessment, approximately half of the sample had poor sleep quality, both by self-report and objective measures. However, the sleep trajectories differed significantly over time, with older caregivers (≥ 65 years) having significantly longer sleep durations than younger caregivers (<65 years). Furthermore, sleep quality also differed over time depending on the caregiver's relationship to the patient, with partner caregivers having significantly worse sleep quality than other family caregivers.
  
  
  CONCLUSIONS
  Caring for a dying family member is known to interfere with sleep, yet little is known about bereaved caregivers. The results of this pilot study demonstrate the feasibility of the longitudinal study protocol and indicate that sleep problems are common for caregivers and continue into the bereavement period, particularly for partner caregivers. The caregiver's relationship to the patient may be an important factor to consider in future studies.
authors.affiliation: Department of Nursing Science, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway Lovisenberg Diakonale Hospital, Oslo, Norway.
authors.forename: Anners
authors.identifier: http://orcid.org/0000-0002-7144-5096
authors.initials: A
authors.lastname: Lerdal
authors.affiliation: Lovisenberg Diakonale University College, Oslo, Norway.
authors.forename: Kari
authors.initials: K
authors.lastname: Slåtten
authors.affiliation: Lovisenberg Diakonale Hospital, Oslo, Norway.
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Saghaug
authors.affiliation: Oslo and Akershus University College of Applied Sciences, Institute of Nursing, Oslo, Norway Department of Health, Sogn and Fjordane University College, Førde, Norway.
authors.forename: Ellen Karine
authors.initials: EK
authors.lastname: Grov
authors.affiliation: Lovisenberg Diakonale Hospital, Oslo, Norway.
authors.forename: Are Peder
authors.initials: AP
authors.lastname: Normann
authors.affiliation: Department of Family and Health Care Nursing, University of California, San Francisco, San Francisco, California, USA.
authors.forename: Kathryn A
authors.initials: KA
authors.lastname: Lee
authors.affiliation: Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway Haukeland University Hospital, Norwegian Competence Center for Sleep Disorders, Bergen, Norway.
authors.forename: Bjørn
authors.initials: B
authors.lastname: Bjorvatn
authors.affiliation: Lovisenberg Diakonale Hospital, Oslo, Norway Department of Family and Health Care Nursing, University of California, San Francisco, San Francisco, California, USA.
authors.forename: Caryl L
authors.initials: CL
authors.lastname: Gay
mesh_terms: D056044:Actigraphy; D000328:Adult; D000368:Aged; D001601:Bereavement; D017028:Caregivers; D003643:Death; D005190:Family; D005260:Female; D017051:Hospice Care; D006738:Hospices; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009664:Norway; D010865:Pilot Projects; D057566:Self Report; D012890:Sleep; D007319:Sleep Initiation and Maintenance Disorders / Q000209:etiology*
keywords: MENTAL HEALTH; ONCOLOGY; sleep