Family perspectives and experiences on implementing telehealth in pediatric palliative care: a qualitative approach
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 sustaina...
| Autores: | , , , , , , , , |
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| Tipo de recurso: | artículo |
| Estado: | Versión publicada |
| Fecha de publicación: | 2025 |
| País: | España |
| Institución: | Universitat de Lleida (UdL) |
| Repositorio: | Repositori Obert UdL |
| OAI Identifier: | oai:repositori.udl.cat:10459.1/467814 |
| Acceso en línea: | https://doi.org/10.1007/s00431-025-06124-6 https://hdl.handle.net/10459.1/467814 |
| Access Level: | acceso abierto |
| Palabra clave: | Pediatrics Palliative medicine Patient-centered care Telemedicine Caregivers |
| Sumario: | 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 refne 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 infuencing its adoption. A key fnding was the collective desire among PCGs for telehealth solutions that support a patient and familycentered, holistic care model that integrates various health services without compromising the humanized essence of care. Conclusions: 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 fts into family life, and focusing on customization for patients. |
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