Childhood cancer presents a major life stressor for the patient and their family. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care professionals and accessibility, which is often reduced due to distance, time, cost and transport.
One way to overcome these limitations is the provision of support via video telephone. Investigations in paediatric oncology have been underway at the COH since 2003. The broad aim has been to identify whether web cameras and the Internet can be used to improve the support provided to regional families.
A randomised control trial, which commenced in February 2008, aims to establish the feasibility and acceptability of using video telephony to improve the clinical and psychosocial support provided to regional and remote paediatric oncology patients and their families. In addition, the study aims to determine whether videotelephony is an effective means of supporting parents in the challenging post-discharge period and if this model of remote care and support is cost-effective.
In total, 75 families have participated in the trial with 19 families receiving 60 videotelephone support links from Brisbane. Anecdotally, parents who received videotelephone support appreciated being able to view and discuss concerns with hospital staff; whilst staff reported that they felt that they were able to provide greater support to these families. Results of the final analysis are due to be published later in 2010.
As a result of these investigations, the Raelene Boyle Outreach program was established in 2009 and a program to support Oncology Discharge is being developed.
The Raelene Boyle Outreach program is a service that has been established for Paediatric palliative care families and is independently funded by the Sporting Chance Cancer Foundation. The program uses internet based technology to support families caring for a child with cancer and other life threatening conditions by facilitating video telephony calls with the Paediatric Palliative care Service. This program enables families who live a great distance away from the hospital to continue to receive support, care and advice by connecting audio visually in real time with the paediatric palliative care team. Families are able to video conference with Paediatric Palliative Care Service and other Specialist medical teams in the comfort of their own home, effectively bringing the Docotrs appointment to their lounge room. As well as connecting families with their medical teams, the program has been used for video telephony with the Clown doctors who have proven to be very popular.
From August 2009 until April 2010, 21 families have used the program from as far away as Mareeba in far North Queensland.
As well as delivering a service, the Raelene Boyle Outreach program participates actively in research projects aiming to develop and contribute to the comparatively small knowledge base that exists in the literature for paediatric palliative care.