NCHPC Survey - Assessing Access Barriers to Pediatric Palliative Care and Hospice

The Pediatric Division of the National Coalition for Hospice and Palliative Care is beginning a process to establish a national policy agenda for pediatric palliative care and hospice. This agenda will be used as the basis for the Coalition's advocacy efforts.

To develop a policy agenda, the Division will follow three steps: (1) assess access to pediatric palliative care and hospice, (2) analyze barriers to pediatric palliative care and hospice access, utilization, and care delivery, and (3) develop policy recommendations. The Division will then produce a report that can be used to raise awareness, provide education, and advocate for change.

To begin these efforts, we request that you complete this survey. This survey will be used as a preliminary data collection tool. The idea is to provide space for subject matter experts to share what they know and what is top of mind in an informal way. We will gather these initial responses and use them as a base to build our collective knowledge and establish an evidence-base through a multistage process.

The survey consists of seven questions and will take approximately 5-7 minutes to complete.

We greatly appreciate your participation!

Question Title

* 1. In your opinion, what are the top five barriers to pediatric palliative care access, utilization, and care delivery? If the choices below do not reflect your experience, you may select "other" to share any barrier(s) that are not listed.

Lack of timely services due to delayed authorizations

Shortage of home-based pediatric palliative care programs

Workforce Shortages

Insufficient research and evidence-based standards

Variability and confusion among payers

Inadequate Reimbursement

Inconsistent eligibility criteria across settings

Lack of timely referrals

Geographic barriers

Lack of awareness and education among families leading to misconceptions about pediatric palliative care.

Lack of awareness and education among healthcare providers leading to misconceptions about pediatric palliative care.

Other barriers (please specify)

Question Title

* 2. In your opinion, what are the top five barriers to pediatric hospice care access, utilization, and care delivery? If the choices below do not reflect your experience, you may select "other" to share any barrier(s) that are not listed.

Lack of awareness and education among healthcare providers leading to misconceptions about pediatric hospice and concurrent care.

Workforce Shortages

Shortage of home-based pediatric hospice programs

Lack of timely services due to delayed authorizations

Variability and confusion among payers

Lack of awareness and education among families leading to misconceptions about pediatric hospice and concurrent care.

Inconsistent eligibility criteria

Inadequate Reimbursement

Insufficient research and evidence-based standards

Lack of timely referrals

Geographic barriers

Inconsistent implementation of concurrent care

Other barriers (please specify)

Question Title

* 3. Below are some examples of proposed policies and activities that have been suggested by the Division. Please select your top five priorities. If you have additional suggestions, you may also choose "other" to share any recommendations that are not listed.

Family caregiver reimbursement

Establishing consensus on design of a national palliative care benefit or legislation

Extended bereavement support for families experiencing the death of a child

State by state review of community-based pediatric palliative and hospice care programs to identify gaps and inform advocacy efforts

Policies that address the transition from pediatric to adult palliative care

Development of guidelines for state pediatric palliative care benefits

Support for state efforts specific to pediatric palliative care

Workforce development

Support for state efforts specific to concurrent care

Redefining eligibility and expanding services offered under concurrent care

Federal funding for pediatric concurrent care

Support for PCHETA (Palliative Care and Hospice Education and Training Act)

Other recommendations (please specify)

Question Title

* 4. What should be considered for parents and caregivers of seriously ill children when providing awareness of and access to pediatric palliative care and hospice?

Challenges with equitable access to care in rural areas

Misconceptions about pediatric palliative care, hospice and concurrent care

Need for comprehensive support beyond specialist care

Lack of available pediatric palliative and hospice care providers or services

Support for self-advocacy and financial concerns

Other considerations (please specify)

Question Title

* 5. What else should we be asking or monitoring as we assess access to pediatric palliative care and hospice and analyze the barriers? Is there anything you would like to share with us to help shape this process?

Question Title

* 6. Your Discipline

Physician

Physician Assistant

Nurse

Social Worker

Psychologist

Chaplain

Child Life Therapist

Art & Music Therapist

Rehabilitation Therapist

Pharmacist

Dietician

Parent

Family member (grandparent, sibling, etc.)

Other (please specify)

Question Title

* 7. We would like to stay in touch and share the survey results and any policy recommendations that emerge from the survey. Please share with us your contact information and your affiliations including your employment and any relevant committee service.

Name

Title

Discipline

Affiliations