"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.

Background: 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. Design: 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. Thirty-seven caregivers (n = 22 from oncology; n = 15 from intensive care) of 33 children completed T3 interviews; most were mothers (n = 25, 67.6%), African American (n = 18, 48.6%), and married (n = 28, 75.7%). Measurement: Benefits and burdens were assessed by three open-ended questions asked by an interviewer during a scheduled telephone contact. Responses were analyzed using descriptive semantic content analysis techniques and themes were extracted. Results: All 37 T3 participants completed the 3 questions, resulting in no missing data. The most frequently reported themes were of positive personal impact: "Hoping to help others," "Speaking about what is hard is important," and "Being in the study was sometimes hard but not bad." Conclusions: No caregiver described the study as burdensome. Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge.

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. Training consisted of didactic and self-directed learning, mentoring, and completion of unit-based projects to establish meaning and impact best practices and policies. A total of 149 direct care clinicians, comprising 3 cohorts, enrolled in the program. Improvements in interdisciplinary collaboration in care were demonstrated through 21 unit-based projects, the development of triggers for specialty palliative care consults in several high-risk populations, and the development of institutional guidelines for end-of-life care. The Comfort Theory™ guided integration of palliative care for children with serious illness and their families. This project empowered direct care clinicians in caring for patients, providing support to clinical staff, and in developing best practices.

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. End-of-life issues that can be anticipated by nurses and other clinicians include symptoms of cancer or its treatment, the importance of hopefulness, the relevance of trying to be a good parent in decision making, the meaning of legacy making of ill children, and family bereavement. IMPLICATIONS FOR NURSING PRACTICE: Direct nursing care strategies to achieve pediatric palliative care goals are vital to reduce child and family suffering from cancer.