"It Can Be Hard But It's Not Bad": Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research.

To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated.

Integrating the Comfort Theory™ Into Pediatric Primary Palliative Care to Improve Access to Care.

Primary palliative care improves access to symptom control and quality-of-life care for children and families and can reduce moral distress in clinicians. This article describes the application of a nursing theory framework for an evidence-based practice/quality improvement project that embedded pediatric primary palliative care into a hospital-based setting using unit-specific projects. An evidence-based practice/quality improvement project, guided by the Comfort Theory™, provided primary palliative care education and mentorship to improve knowledge, skills, and attitudes of direct care clinicians.

Pediatric palliative care in childhood cancer nursing: from diagnosis to cure or end of life.

Objectives: To describe selected components of pediatric palliative care from diagnosis to cure or end of life that combine to help nurses and other clinicians achieve goals of care for children with cancer and their families.

Data Sources: Published articles.

Conclusion: Pediatric palliative care is characterized by diversity of care delivery models; effect of cancer on the family as the central focus of care; and consideration of culture, spirituality, communication, and ethical standards.