An Examination of Quality of Life of Children and Parents During Their Tele-HomeCare Experience

Abstract

Video-conferencing and remote vital signs monitors were used to provide Tele-HomeCare (THC) to children with complex healthcare needs. This paper reports the effects of THC on the health-related quality of life (QoL) of children and their parents, and the Impact on Families (IoF). A total of 63 children and their parents were enrolled in a THC trial in which they received traditional home care services and up to 6 weeks of THC. A reference group of 16 children and their parents was also recruited and received only traditional home care services. All parents completed QoL questionnaires for both their child and themselves, and the IoF scale. Complete data were available for 50 THC participants: 34 of these had no readmissions and 16 experienced multiple admissions. The reference group contained 10 participants who received standard community care. All three groups experienced similar improvements in quality of life at the time of their discharge to home after which their QoL remained stable. There were no significant differences in the IoF scores. THC is an effective clinical service that supports the transition from hospital to home at a time when the children continued to have complex care needs. Furthermore, improvements in QoL were observed for these families that were similar to those of families whose children had less intensive care needs. Moreover, the improvements were sustained beyond the termination of the THC service and were not associated with additional burden on families.

The case for home based telehealth in pediatric palliative care: a systematic review

“…Oliver concluded that it appeared that the technology was seen as a burden at this time by family members. This adds weight to the concept discussed by Young [11] that video consultations may reach a threshold where their usefulness ceases.…”

“…Five studies, including Morgan et al [3], Young et al [11], Laila et al [13], Hebert et al [42] and Demiris et al [28] examined the effect of home telehealth via video-consultation on quality of life and in particular, anxiety for families caring at home. Morgan and colleagues [3] focussed on children with congenital heart disease post-discharge from hospital and compared outcomes of telephone contact only with using home telehealth .…”

“…Young and colleagues [11] recruited families with children with complex medical needs; 44 to the intervention of ‘telehomecare’ and compared them with 10 control families. The intervention of telehomecare included remote vital sign monitoring and videoconferencing for children predominantly recovering from cardiac surgery.…”

“…No statistically significant differences were found in the quality of life scores of the groups, but families subjectively reported that telehomecare provided a sense of security at an otherwise difficult time. The intervention was viewed as a successful service that enhanced the facilitation of discharge home for patients with high care needs [11]. In a qualitative report of the same study [9], the use of videoconferencing was found to consistently reduce at around three weeks after discharge.…”

Health Information Technology to Facilitate Communication Involving Health Care Providers, Caregivers, and Pediatric Patients: A Scoping Review

“…Although the realities of some contexts can make this ideal impracticable, eight examples of researchers using phased approaches (featuring multiple related studies) to development and evaluation of their interventions were found here [8,10,18,21,25,30,65,66,77,78,92-94,102-105,108,109]. …”