Family perspectives and experiences on implementing telehealth in pediatric palliative care: a qualitative approach

Abstract

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.