Community-Based Provider Concerns About Pediatric Hospice and Palliative Care

Area of Science:

• Pediatric Palliative Care
• Hospice and Palliative Care
• Healthcare Management

Background:

• Community-based organizations are vital for pediatric hospice and palliative care.
• Families frequently depend on these services for comprehensive care.
• Understanding clinician perspectives is essential for service improvement.

Purpose of the Study:

• To investigate the unique concerns of clinicians providing pediatric hospice and palliative care.
• To identify specific challenges faced by field-based professionals in the US.
• To inform strategies for enhancing pediatric end-of-life care.

Main Methods:

• A survey was distributed to members of the National Alliance for Care at Home (the Alliance).
• Responses to a free-text question about pediatric care concerns were analyzed.
• Semantic content analysis was employed to interpret qualitative data.

Main Results:

• 31% of 295 respondents shared concerns about pediatric palliative and hospice care.
• The primary worry for 53% of respondents was "unmet needs".
• Other key concerns included resource limitations, staffing issues, training gaps, emotional burden, policy ambiguity, and community stigma.

Conclusions:

• Clinicians' concerns highlight a tension between practical realities and the core philosophy of hospice and palliative care.
• There is a risk of core values like equity and quality being compromised.
• Coordinated research and engagement are needed to address these challenges proactively.