Original Article| Volume 60, ISSUE 3, P512-521.e7, September 2020

Strengths, Gaps, and Opportunities: Results of a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources



      Pediatric palliative care (PPC) can improve quality of life of children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, and PPC resources and personnel are often inequitably distributed toward urban areas with major hospital systems. A community needs assessment (CNA) that evaluates the current status of PPC and pediatric hospice care can help identify gaps and opportunities to improve PPC access.


      A CNA was performed in the state of Georgia to explore the scope and gaps of PPC and hospice services and plan for what is needed to grow PPC and hospice services.


      The CNA used a mixed-methods approach, including a community profile, literature search, windshield survey, key informant interviews, and a quantitative online survey. The methodology is outlined in a companion article, entitled “A methodological approach to conducting a statewide community needs assessment of pediatric palliative care and hospice resources.”


      Four key themes were identified from synthesis of primary and secondary data collection: defining and providing PPC, the environment for PPC in Georgia, coordination and collaboration, and the future of PPC in Georgia. Recommendations to improve PPC services in Georgia were categorized by feasibility and importance. High feasibility and high importance recommendations included expanding PPC education for both providers and patients and creating a formal network or coalition of PPC providers and allies who can work collaboratively at multiple care levels across Georgia in expanding PPC services.


      In Georgia, this assessment provides the foundation for next steps in coordinated efforts between hospital-based clinicians, state hospice and palliative care organizations, and state policy makers to ultimately expand PPC care available to children and families.

      Key Words

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Journal of Pain and Symptom Management
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


      1. About palliative care.
        (Available from)
        Date: 2017
        Date accessed: May 22, 2018
        • Kelley A.S.
        • Morrison R.S.
        Palliative care for the seriously ill.
        N Engl J Med. 2015; 373: 747-755
        • Meier D.E.
        Palliative medicine and patient satisfaction.
        Healthc Exec. 2015; 30: 56-57
        • Morrison L.J.
        • Morrison R.S.
        Palliative care and pain management.
        Med Clin North Am. 2006; 90: 983-1004
        • Kaye E.C.
        • Rubenstein J.
        • Levine D.
        • et al.
        Pediatric palliative care in the community.
        CA Cancer J Clin. 2015; 65: 316-333
        • Bluebond-Langner M.
        • Beecham E.
        • Candy B.
        • Langner R.
        • Jones L.
        Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy.
        Palliat Med. 2013; 27: 705-713
        • Dussel V.
        • Kreicbergs U.
        • Hilden J.M.
        • et al.
        Looking beyond where children die: determinants and effects of planning a child's location of death.
        J Pain Symptom Manage. 2009; 37: 33-43
        • Kassam A.
        • Skiadaresis J.
        • Alexander S.
        • Wolfe J.
        Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice?.
        Pediatr Blood Cancer. 2014; 61: 859-864
      2. NHPCO's facts and figures: Pediatric Palliative & Hospice Care in America.
        (Available from)
        • Kaye E.C.
        • Gattas M.
        • Kiefer A.
        • et al.
        Provision of palliative and hospice care to children in the community: a population study of hospice nurses.
        J Pain Symptom Manage. 2019; 57: 241-250
        • Smith A.G.
        • Andrews S.
        • Bratton S.L.
        • et al.
        Pediatric palliative care and inpatient hospital costs: a longitudinal cohort study.
        Pediatrics. 2015; 135: 694-700
        • Gans D.
        • Hadler M.W.
        • Chen X.
        • et al.
        Cost analysis and policy implications of a pediatric palliative care program.
        J Pain Symptom Manage. 2016; 52: 329-335
        • Brock K.E.
        • Steineck A.
        • Twist C.J.
        Trends in end-of-life care in pediatric hematology, oncology, and stem cell transplant patients.
        Pediatr Blood Cancer. 2016; 63: 516-522
        • Friedrichsdorf S.J.
        • Postier A.
        • Dreyfus J.
        • et al.
        Improved quality of life at end of life related to home-based palliative care in children with cancer.
        J Palliat Med. 2015; 18: 143-150
      3. Financing pediatric palliative and hospice care programs: an important but underutilized service for children with life-limiting conditions.
        (Available from)
        • Bakitas M.A.
        • Elk R.
        • Astin M.
        • et al.
        Systematic review of palliative care in the rural setting.
        Cancer Control. 2015; 22: 450-464
        • Brazil K.
        • Bedard M.
        • Krueger P.
        • et al.
        Barriers to providing palliative care in long-term care facilities.
        Can Fam Physician. 2006; 52: 472-473
        • Jones C.A.
        • Bull J.
        • Acevedo J.
        • Kamal A.H.
        Top ten inpatient palliative medicine billing and coding mistakes (and how to fix them this week).
        J Palliat Med. 2015; 18: 211-216
        • Knapp C.
        • Thompson L.
        Factors associated with perceived barriers to pediatric palliative care: a survey of pediatricians in Florida and California.
        Palliat Med. 2012; 26: 268-274
      4. Participant workbook: community needs assessment.
        (Available from)
        • Altschuld J.W.
        • Kumar D.D.
        Needs assessment: An overview.
        Sage, Thousand Oaks, CA2010
        • Higginson I.J.
        • Hart S.
        • Koffman J.
        • Selman L.
        • Harding R.
        Needs assessments in palliative care: an appraisal of definitions and approaches used.
        J Pain Symptom Manage. 2007; 33: 500-505
        • Emory Prevention Research Center
        Community assessment: setting the stage for effective programs.
        (Available from)
        • Miles M.B.
        • Huberman A.M.
        Qualitative data analysis: An expanded sourcebook.
        2nd ed. Sage Publications, Thousand Oaks, CA1994
        • Altschuld J.W.
        • Witkin B.R.
        From needs assessment to action: Transforming needs into solution strategies.
        Sage Publications, Thousand Oaks, CA2000
      5. ACS demographic and housing estimates: 2011-2015 American community survey 5-year estimates. In: United States Census Bureau American Fact Finder: US Census data tracker; 2015.

        • Mills D.M.
        • Williams D.C.
        • Dobson J.V.
        Simulation training as a mechanism for procedural and resuscitation education for pediatric residents: a systematic review.
        Hosp Pediatr. 2013; 3: 167-176
      6. The Georgia healthcare landscape.
        (Available from)
      7. 2016 Annual report: Georgia.
        (Available from)
      8. Medicare & Medicaid research review, statistical supplement.
        (Available from)
      9. Hospices in Georgia.
        (Available from)
        Date: 2017
        Date accessed: May 22, 2018
        • Johnson K.
        Pediatric hospices by county.
        in: Pediatric Advanced Care Team. Children's Healthcare of Atlanta, 2017
      10. Concurrent Care for Children Implementation Toolkit.
        (Available from)
        Date: 2017
        Date accessed: October 6, 2017
        • Miller E.G.
        • Laragione G.
        • Kang T.I.
        • Feudtner C.
        Concurrent care for the medically complex child: lessons of implementation.
        J Palliat Med. 2012; 15: 1281-1283
        • Lindley L.C.
        Health care reform and concurrent curative care for terminally ill children: a policy analysis.
        J Hosp Palliat Nurs. 2011; 13: 81-88
        • Greiner L.
        • Buhr B.
        • Phelps D.
        • Ward S.
        • Wisconsin Coalition to Improve Palliative Care
        A palliative care needs assessment of health care institutions in Wisconsin.
        J Palliat Med. 2003; 6: 543-556
        • Friedrichsdorf S.J.
        • Remke S.
        • Hauser J.
        • et al.
        Development of a pediatric palliative care curriculum and dissemination model: education in palliative and end-of-life care (EPEC) pediatrics.
        J Pain Symptom Manage. 2019; 58: 707-720.e3
        • Piriz Alvarez G.
        Technology for improving accessibility of end-of-life care: extension for community healthcare outcomes project.
        Curr Opin Support Palliat Care. 2018; 12: 466-471
        • Thienprayoon R.
        • San Julian Mark M.
        • Grossoehme D.
        Provider-prioritized domains of quality in pediatric home-based hospice and palliative care: a study of the Ohio pediatric palliative care and end-of-life network.
        J Palliat Med. 2018; 21: 290-296
        • Aldridge M.D.
        • Hasselaar J.
        • Garralda E.
        • et al.
        Education, implementation, and policy barriers to greater integration of palliative care: a literature review.
        Palliat Med. 2016; 30: 224-239
        • Georgia Medicaid
        Patients First Act.
        (Available from)
        Date: 2019
        Date accessed: April 1, 2020