title: A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions.
abstract: BACKGROUND
  Respite services are recommended as an important support for caregivers of children with life-threatening conditions. However, the benefits of respite have not been convincingly demonstrated through quantitative research.
  
  
  OBJECTIVE
  To determine the impact of out-of home respite care on levels of fatigue, psychological adjustment, quality of life and relationship satisfaction among caregivers of children with life-threatening conditions.
  
  
  METHODS
  A mixed-methods, pre-test and post-test study
  
  
  METHODS
  A consecutive sample of 58 parental caregivers whose children were admitted to a children's hospice for out-of-home respite over an average of 4 days.
  
  
  RESULTS
  Caregivers had below-standard levels of quality of life compared to normative populations. Paired t-tests demonstrated that caregivers' average psychological adjustment scores significantly improved from pre-respite (mean = 13.9, standard error = 0.71) to post-respite (mean = 10.7, standard error = 1); p < 0.001, 95% confidence interval: 1.25-5.11). Furthermore, caregivers' average fatigue scores significantly improved from pre-respite (mean = 14.3, standard error = 0.85) to post-respite (mean = 10.9, standard error = 1.01; p < 0.001, 95% confidence interval: 1.69-7.94), and caregivers' average mental health quality of life scores significantly improved from pre-respite (mean = 44.2, standard error = 1.8) to post-respite (mean = 49.1, standard error = 1.6; p < 0.01, 95% confidence interval: -9.56 to 0.36). Qualitative data showed caregivers sought respite for relief from intensive care provision and believed this was essential to their well-being.
  
  
  CONCLUSIONS
  Findings indicate the effectiveness of out-of-home respite care in improving the fatigue and psychological adjustment of caregivers of children with life-threatening conditions. Study outcomes inform service provision and future research efforts in paediatric palliative care.
authors: Centre for Palliative Care, St Vincent's Hospital, Fitzroy, VIC, Australia cremedios@mercy.com.au.
authors: Cheryl
authors: C
authors: Remedios
authors: Centre for Palliative Care, St Vincent's Hospital, Fitzroy, VIC, Australia.
authors: Lisa
authors: L
authors: Willenberg
authors: Centre for Palliative Care, St Vincent's Hospital, Fitzroy, VIC, Australia.
authors: Rachel
authors: R
authors: Zordan
authors: Very Special Kids, Malvern, VIC, Australia.
authors: Andrea
authors: A
authors: Murphy
authors: Very Special Kids, Malvern, VIC, Australia.
authors: Gail
authors: G
authors: Hessel
authors: Centre for Palliative Care, St Vincent's Hospital, Fitzroy, VIC, Australia.
authors: Jennifer
authors: J
authors: Philip
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D065187:Controlled Before-After Studies; D005221:Fatigue / Q000209:etiology; D005260:Female; D006738:Hospices; D006801:Humans; D008297:Male; D010166:Palliative Care / Q000458:organization & administration*; D010290:Parents / Q000523:psychology; D036301:Qualitative Research; D011788:Quality of Life; D012144:Respite Care / Q000458:organization & administration / Q000592:standards*
keywords: Respite care; caregivers; paediatric palliative care; psychological adjustment; quality of life