Peñarrubia-San-Florencio Lucia, Junior Carlos Godoy, Ricart Silvia, Vilarrubí Sergi Navarro, Ruiz-Herguido Cristina, Esteve Arnau Valls, Meca-Santamaria Julia, Blanco-Blanco Joan, Valls Laura Lahuerta
Pediatric Palliative Care Service, Sant Joan de Déu Hospital, Esplugues de Llobregat, Barcelona, Spain.
Institut de Recerca Sant Joan de Déu (IRSJD), Esplugues de Llobregat, Barcelona, Spain.
Eur J Pediatr. 2025 Apr 8;184(5):287. doi: 10.1007/s00431-025-06124-6.
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.
远程医疗被视为改善儿科姑息治疗（PPC）可及性和质量的一条有前景的途径，但长期让用户使用数字工具（DT）是一项挑战。使远程医疗举措与家庭的实际需求和期望保持一致对于可持续的护理模式至关重要。为了探索家庭在PPC中对远程医疗的看法和体验，关注他们的需求、观点、担忧和希望，以完善数字护理模式。本研究采用定性方法，通过与PPC患者的主要照顾者（PCG）进行半结构化访谈和焦点小组讨论相结合的方式收集数据。在PPC背景下使用远程医疗服务的儿童的PCG。对7个人的访谈和一个由8人组成的焦点小组揭示了三个主要主题：参与使用远程医疗的PPC服务的体验、远程医疗在PPC中的变革潜力以及影响其采用的障碍和促进因素。一个关键发现是PCG群体共同希望有远程医疗解决方案来支持以患者和家庭为中心的整体护理模式，该模式整合各种健康服务且不损害护理的人性化本质。
家庭总体上对将远程医疗整合到PPC中持积极态度，强调需要保持人性化护理核心价值观的远程医疗模式。成功取决于在整个开发过程中让最终用户参与，实施适合家庭生活的用户友好型技术，并注重为患者定制。
• 远程医疗已成为应对PPC中对高度专业化护理日益增长需求的创新举措。• 数字健康解决方案往往随着时间推移面临越来越高的弃用率。
• 照顾有姑息需求儿童的家庭接受远程医疗，确定了其长期成功的关键特征。• 他们重视护理中个人关注的保留，强调在数字创新的同时保持人际联系的重要性。
