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. 2023 Jul 30;10(8):1315.
doi: 10.3390/children10081315.

Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care

Jannik Zimmermann  1 , Marie Luise Heilmann  1 , Manuel Fisch-Jessen  2 , Holger Hauch  3 , Sebastian Kruempelmann  2 , Heidi Moeller  1 , Laura Nagel  1 , Michaela Nathrath  4 , Vera Vaillant  3 , Thomas Voelker  4 , Merlin Jonas Deckers  4
Affiliations

Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care

Jannik Zimmermann et al. Children (Basel). .

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.

Keywords: caregivers; home care services; needs; palliative care; pediatrics; telehealth.

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Conflict of interest statement

The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript; or in the decision to publish the results.

Figures

Figure 1
Figure 1
Illustration of applications and barriers to telehealth in PPHC.
Figure 2
Figure 2
Concerns expressed by families and teams regarding the complementary use of telehealth in PPHC.
See this image and copyright information in PMC

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