title: Respite needs of families receiving palliative care.
abstract: OBJECTIVE
  The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this.
  
  
  METHODS
  A cohort of 34 families cared for by the Paediatric Palliative Care Service in Queensland were approached to participate in a 20-question survey about their current respite preferences for future respite, with 20 surveys returned.
  
  
  RESULTS
  Three of the families (15%) reported receiving no respite in the previous 12 months. Families who received respite received a combination of formal respite (a structured care provider) and informal respite (family or friends). Ten families (50%) reported that they would want the time of respite changed. Barriers to receiving adequate respite included complexity of care of the child, financial barriers and lack of a respite provider.
  
  
  CONCLUSIONS
  There is disparate provision of respite care with the main perceived barrier to attaining 'ideal respite' being the lack of a provider able to meet the complex care needs of their child. The provision of respite across diversity in geography; medical condition; social and cultural needs remains a challenge.
authors.affiliation: Paediatric Palliative Care Service, Children's Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia.|Department of Emergency Medicine, Lady Cilento Children's Hospital, Brisbane, Queensland, Australia.
authors.forename: Christine H
authors.initials: CH
authors.lastname: Smith
authors.affiliation: Paediatric Palliative Care Service, Children's Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia.|Discipline of Paediatrics and Child Health, School of Medicine, University of Queensland, Brisbane, Queensland, Australia.
authors.forename: Carol A
authors.initials: CA
authors.lastname: Graham
authors.affiliation: Paediatric Palliative Care Service, Children's Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia.|Discipline of Paediatrics and Child Health, School of Medicine, University of Queensland, Brisbane, Queensland, Australia.
authors.forename: Anthony R
authors.initials: AR
authors.lastname: Herbert
mesh_terms: D000293:Adolescent; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005190:Family / Q000523:psychology*; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007223:Infant; D008297:Male; D010166:Palliative Care / Q000523:psychology*; D011793:Queensland; D012144:Respite Care; D011795:Surveys and Questionnaires
keywords: child; life-limiting illness; palliative care; respite