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Research Article: Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care

Date Published: 2023-07-30

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.

Introduction:
In Germany, children, adolescents, and young adults (hereafter referred to as “children”) with life-limiting or life-threatening illnesses are cared for at home by Pediatric Palliative Home Care (PPHC). PPHC provides 24/7 on-call palliative care at home. This improves the quality of life of children with life-limiting illnesses [1]. The highly specialized teams consist of physicians, nurses, social workers, and psychologists, and have large catchment areas by German standards; travel times of 90 min one way are…

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