title: Using videotelephony to support paediatric oncology-related palliative care in the home: from abandoned RCT to acceptability study.
abstract: Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment), designed to investigate the use of videotelephony with families receiving palliative care from a tertiary paediatric oncology service in Brisbane, Australia. To investigate whether providing videotelephone-based support was acceptable to these families, a 12-month non-randomised acceptability trial was completed. Seventeen palliative care families were offered access to a videotelephone support service in addition to the 24 hours 'on-call' service already offered. A 92% participation rate in this study provided some reassurance that the use of videotelephones themselves was not a factor in poor RCT participation rates. The next phase of research is to investigate the integration of videotelephone-based support from the time of diagnosis, through outpatient care and support, and for palliative care rather than for palliative care in isolation. Trial registration ACTRN 12606000311550.
authors.affiliation: The University of Queensland Centre for Online Health, Royal Children's Hospital, Herston, QLD 4029, Australia. m.bensink@coh.uq.edu.au
authors.forename: M E
authors.initials: ME
authors.lastname: Bensink
authors.forename: N R
authors.initials: NR
authors.lastname: Armfield
authors.forename: R
authors.initials: R
authors.lastname: Pinkerton
authors.forename: H
authors.initials: H
authors.lastname: Irving
authors.forename: A R
authors.initials: AR
authors.lastname: Hallahan
authors.forename: D G
authors.initials: DG
authors.lastname: Theodoros
authors.forename: T
authors.initials: T
authors.lastname: Russell
authors.forename: A G
authors.initials: AG
authors.lastname: Barnett
authors.forename: P A
authors.initials: PA
authors.lastname: Scuffham
authors.forename: R
authors.initials: R
authors.lastname: Wootton
mesh_terms: D000293:Adolescent; D000328:Adult; D001315:Australia; D002648:Child; D002675:Child, Preschool; D003195:Computer Communication Networks / Q000191:economics*; D016494:Computer Security; D003266:Continuity of Patient Care; D003362:Cost-Benefit Analysis; D057239:Early Termination of Clinical Trials; D005260:Female; D006297:Health Services Accessibility / Q000191:economics; D006699:Home Care Services / Q000191:economics*; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000628:therapy; D010166:Palliative Care; D010290:Parents / Q000523:psychology; D010342:Patient Acceptance of Health Care; D017060:Patient Satisfaction; D019035:Rural Health Services / Q000191:economics; D017216:Telemedicine / Q000191:economics* / Q000295:instrumentation / Q000379:methods; D049269:Videoconferencing / Q000191:economics* / Q000295:instrumentation