Using the telephone to support families, exchange information and coordinate care is common in paediatric palliative care. Yet for the best communication we use much more than words to convey our meaning. Fifty five percent of information is communicated non-verbally (McGear & Simms,1988). This includes the way a person holds themselves or uses their hands or expressions on their face. This “body language” provides us with much more information than just the words.
Many people use Skype or a similar program to connect with friends and family across the world, but the use of such programmes are not commonplace in paediatric palliative care services. This is changing and opening up wonderful opportunities to share and mentor across the globe. Access to and use of the internet has grown rapidly, most notably in Africa at almost 3000% in 10 years. It is not perfect and many areas, even in higher income countries, still do not have good access but this is changing.
The use of the internet for health care has expanded rapidly in the last few decades. Many large Universities and medical centres use video connections for consultation, education and patient care. With the expansion of internet access this ability to connect quickly and effectively has grown. Medical centres may have large complex telehealth units that allow remote visual access to diagnostic procedures, specialist consultations and even , remote robotic controlled surgery. This advanced use of the internet to gather and exchange health care information uses complex and expensive machine. However for our field it does not need to be so.
Keep it Simple
K.I.S – Keep It Simple – is the motto. Easy to use, low cost (or even free!) programmes are available and can be used to both improve and expand paediatric palliative care. It is important to note the importance of ensuring online security, privacy and patient confidentiality when choosing a programme. Ensure they meet your country’s regulations.
Trained paediatric professionals such as nurses, physicians, social workers and others are often few and far between. Video visits can help meet the needs of children and families who do not have access to this expertise. Video visits to families at home can provide the family with support and instruction on the care of the child. Medications can be reviewed visually with the family and a professional can see and observe the child. Video visits can save families long and often difficult trips to the doctor and allow the palliative care team to stay in close touch with their patient and families. Where payment is an issue, these visits can be reimbursed depending on your healthcare system.
One large research study looked at the effects of using video visits to bring the family into the team meeting on a weekly basis. Each family had a 5 minute video visit with the whole team. (Oliver 2012) Families felt the additional support was appreciated and the team found the direct family interaction helpful.
Video visits as a means of triage
One paediatric programme has been using video visits to help triage questions from parents. When a call comes in from a parent, the nurse will offer a video visit if appropriate. Many parents have home computers with a camera and internet access. The video visit allows the professional to see what the issue is and be better able to help the parent solve it. In one case, the mother of a child called and said “There is blood all over where the IV is.” She was very upset. The nurse talked to her and made sure the child was not actively haemorrhaging and comfortable, then offered a video visit. As the mother pointed the laptop camera on the IV site the nurse was able to see that indeed there was some blood around the site but it was not significant, however the site was red, inflamed and swollen. The nurse was able to take the next steps to get appropriate treatment quickly to the child to treat this infected site.
What does the future hold?
Video visits can be used to assist families and care providers in the home and local clinics but it can also be a source for education and mentoring. Online classes and video mentoring sessions can provide professionals with the information and training that was once out of reach. Even in areas where the internet is not reliable, local professionals have been able to receive power point presentations by email and then have the instructor connect by phone. The internet has opened many opportunities for people to share grow and improve paediatric palliative care. It will be exciting to see how it develops and brings us all closer in the future to improve care for children with palliative care needs and their families.
Some websites with more information
International Society International society for Telemedicine and e-Health (ISfTeH)
For Further information in articles
- Cady, R., Kelly, A., & Finkelstein, S. (2008). Home telehealth for children with special health-care needs. Journal of Telemedicine & Telecare, 14(4), 173-177.
- Day, M., Demiris, G., Oliver, D. P., Courtney, K., & Hensel, B. (2007). Exploring underutilization of videophones in hospice settings. Telemedicine and e-Health, 13(1), 25-32.
- De Vito,K. (2009). Implementing Adult Learning Principles to Overcome Barriers or Learning in Continuing Higher Education Programs. Online Journal of Workforce Education and Development, 4(3).
- Doolittle, G. C. (2000). A cost measurement study for a home-based telehospice service. Journal of Telemedicine & Telecare, 6(Suppl 1), S193-5.
- Doolittle, G. C., Whitten, P., McCartney, M., Cook, D., & Nazir, N. (2005). An empirical chart analysis of the suitability of telemedicine for hospice visits. Telemedicine Journal & E-Health, 11(1), 90-97.
- Duursma, F., Schers, H. J., Vissers, K. C., & Hasselaar, J. (2011). Study protocol: Optimization of complex palliative care at home via telemedicine. A cluster randomized controlled trial. BMC Palliative Care, 10, 13.
- Kidd, L., Cayless, S., Johnston, B., & Wengstrom, Y. (2010). Telehealth in palliative care in the UK: A review of the evidence. Journal of Telemedicine and Telecare, 16(7), 394-402.
- Knowles, M.S., Holton, E. F., & Swanson, R.A. (1998). The Adult Learner: The Definitive Classic in Adult Education and Human Resources Development (5th ed.). Houston, TX: Gulf.
- Maudlin,J.,Keene,J.,Kobb,R. (2006). A Road Map for the Last Journey:Home Telehealth for Holistic End of Life Care. American Journal of Hospice & Palliative Medicine, 23(5), 399-403.
- McGear, R., & Simms, J. P. (1988). Telephone triage & management: A nursing process approach. Philadelphia, PA: W.B. Saunders.
- Oliver, D. R., Demiris, G., Day, M., Courtney, K. L., & Porock, D. (2006). Telehospice support for elder caregivers of hospice patients: Two case studies. Journal of Palliative Medicine, 9(2), 264-267.
- Oliver, D. P., & Demiris, G. (2010). Comparing face-to-face and telehealth-mediated delivery of a psychoeducational intervention: A case comparison study in hospice. Telemedicine and e-Health, 16(6), 751-753.
- Oliver, D. P., Demiris, G., Wittenberg-Lyles, E., Washington, K., Day, T., & Novak, H. (2012). A systematic review of the evidence base for telehospice. Telemedicine and e-Health, 18(1), 38-47.
- Roberts, D., Tayler, C., MacCormack, D., & Barwich, D. (2007). Telenursing in hospice palliative care. Canadian Nurse, 103(5), 24-27.
- Schmidt, K. L., Gentry, A., Monin, J. K., & Courtney, K. L. (2011). Demonstration of facial communication of emotion through telehospice videophone contact. Telemedicine and e-Health, 17(5), 399-401.
- Washington, K. T., Demiris, G., Oliver, D. P., & Day, M. (2008). Telehospice acceptance among providers: A multidisciplinary comparison. American Journal of Hospice & Palliative Medicine, 25(6), 452-457.
- Whitten, P., Holtz, B., Meyer, E., & Nazione, S. (2009). Telehospice: Reasons for slow adoption in home hospice care. Journal of Telemedicine & Telecare, 15(4), 187-190.
- Whitten, P., Doolittle, G., & Mackert, M. (2005). Providers’ acceptance of telehospice. Journal of Palliative Medicine, 8(4), 730-735.
- Wittenberg-Lyles, E., Oliver, D. P., Kruse, R. L., Demiris, G., Gage, L. A., & Wagner, K. (2012). Family caregiver participation in hospice interdisciplinary team meetings: How does it affect the nature and content of communication? Health Communication, , 1-9.
- Zandbelt, L., Smets, E., Oort, F., Godfried, M., & de Haes, H. (2004). Satisfaction with the outpatient encounter. Journal of General Internal Medicine, 19(11), 1088-1095.