Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care

Abstract

Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC.

The German version of the Telehealth Usability Questionnaire (TUQ) and derived short questionnaires for usability and healthcare utility assessment in telehealth and digital therapeutics. (Preprint)

“…A prospective observational cohort study was conducted on two sites: Site 1: Assessment of 12 interactive as well as standalone digital therapeutics in the gastroenterology and rheumatology outpatient clinic at the University Hospital Erlangen. Site 2: Assessment of the video consultation and auscultation features of a telemedical system with patients and their parents receiving pediatric palliative home care (PPHC) in the German state of Hesse (33,34). Both sites used modified versions of the TUQ.…”

“…41.2% (160/390) were male and the mean age was 41.79 ± 13.55 years (Supplementary Material: Table 1). All patients used a digital therapeutic where 13 different apps were mentioned except for group 4, which comprised children, adolescents, and young adults with life-limiting illnesses living at home using a telemedical system for video consultation and auscultation (33,34). Parallel analysis suggested a two-factor solution, i.e., substantially fewer factors than the six factors originally proposed for the questionnaire.…”