2026-04-17T13:16:09Zhttps://recercat.cat/oai/request

oai:recercat.cat:11351/130722025-10-24T10:59:28Zcom_2072_451665com_2072_378040col_2072_451666

2025-10-24T10:59:28Z urn:hdl:11351/13072 Family perspectives and experiences on implementing telehealth in pediatric palliative care: a qualitative approach Peñarrubia San Florencio, Lucía Godoy Junior, Carlos Ricart, Silvia Navarro-Vilarrubí, Sergi Ruiz-Herguido, Cristina Valls Esteve, Arnau Lahuerta-Valls, Laura Telemedicina Pediatria Tractament pal·liatiu Atenció domiciliària HEALTH CARE::Health Services Administration::Patient Care Management::Delivery of Health Care::Telemedicine DISCIPLINES AND OCCUPATIONS::Health Occupations::Medicine::Palliative Medicine DISCIPLINES AND OCCUPATIONS::Health Occupations::Medicine::Pediatrics NAMED GROUPS::Persons::Persons::Occupational Groups::Health Personnel::Caregivers Other subheadings::Other subheadings::/psychology ATENCIÓN DE SALUD::administración de los servicios de salud::gestión de la atención al paciente::prestación sanitaria::telemedicina DISCIPLINAS Y OCUPACIONES::profesiones sanitarias::medicina::medicina paliativa DISCIPLINAS Y OCUPACIONES::profesiones sanitarias::medicina::pediatría DENOMINACIONES DE GRUPOS::personas::personas::grupos profesionales::personal sanitario::cuidadores de pacientes Otros calificadores::Otros calificadores::/psicología Telemedicine; Pediatrics; Palliative medicine Telemedicina; Pediatría; Medicina paliativa Telemedicina; Pediatria; Medicina pal·liativa Telehealth is seen as a promising avenue to improve accessibility and quality of pediatric palliative care (PPC) yet engaging users with digital tools (DT) over the long term poses a challenge. Aligning telehealth initiatives with the actual needs and expectations of families is crucial for sustainable care models. To explore family perspectives and experiences with telehealth in PPC, focusing on their needs, perspectives, concerns, and hopes to refine digital care models. This research employed a qualitative methodology, gathering data through a combination of semi-structured interviews and focus group discussions with primary caregivers (PCGs) of PPC patients. PCGs of children utilizing telehealth services in PPC contexts. Interviews with seven individuals and a focus group of eight revealed three main themes: the experience of engaging with a PPC service that utilizes telehealth, the transformative potential of telehealth within PPC, and the barriers and facilitators influencing its adoption. A key finding was the collective desire among PCGs for telehealth solutions that support a patient and family-centered, holistic care model that integrates various health services without compromising the humanized essence of care. Families are generally positive about integration of telehealth into PPC, emphasizing the need for telehealth models that maintain the core values of humanized care. Success depends on engaging end-users throughout development, implementing user-friendly technology that fits into family life, and focusing on customization for patients. • Telehealth has emerged as an innovative response to meet the increasing demand for highly specialized care in PPC. • Digital health solutions often face increasing abandonment rates over time. • Families caring for children with palliative needs are receptive to telehealth, identifying essential features for its long-term success. • They value the preservation of personal attention in care, emphasizing the importance of maintaining human connection alongside digital innovations. Open Access funding provided thanks to the CRUE-CSIC agreement with Springer Nature. This research is part of the AICCELERATE project. This project has received funding from the European Union’s Horizon 2020 research and innovation program under grant agreement nº 101016902. 2025-10-24T10:59:28Z 2025-10-24T10:59:28Z 2025-05-12T09:43:41Z 2025-05-12T09:43:41Z 2025-04-08 info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion http://hdl.handle.net/11351/13072 European Journal of Pediatrics;184(5) https://www.doi.org/10.1007/s00431-025-06124-6 Attribution-NonCommercial 4.0 International https://creativecommons.org/licenses/by/4.0/ info:eu-repo/semantics/openAccess Springer Scientia