Journal of Pediatric Nursing
Volume 20, Issue 5 , Pages 335-346 , October 2005

Continuity of Care and Caring: What Matters to Parents of Children with Life-Threatening Conditions

  • Karen S. Heller, PhD
    • ,
  • Mildred Z. Solomon, EdD

      Affiliations

    • Corresponding Author InformationAddress correspondence and reprint requests to Mildred Z. Solomon, EdD, Education Development Center, Inc., 55 Chapel St., Newton, MA 02458.
    • ,
  • for the Initiative for Pediatric Palliative Care (IPPC) Investigator Team

References 

  1. American Academy of Pediatrics. Palliative care for children (RE0007). Policy statement. Pediatrics. 2000;106:351–357
  2. American Geriatrics Society. Measuring quality of care at the end of life: A statement of principles. Journal of the American Geriatrics Society. 1997;45:525–527
  3. Atlas.ti (Version 4.2). n.d. [Computer software]. Berlin: Scientific Software Development. Retrieved August 24, 2005 from www.atlasti.com/A4/index.shmtl.
  4. Canadian Palliative Care Association. In:  Ferris F,  Cummings I editor. Palliative care: Towards a consensus in standardized practice. Ottawa, Ontario: Canadian Palliative Care Association; 1995;
  5. Children's International Project on Palliative/Hospice Services (ChIPPS). Universal principles of pediatric palliative care (1–14 adapted). In: Compendium of pediatric palliative care. Alexandria, VA: National Hospice and Palliative Care Organization; 2000;p. 3–4
  6. Christakis DA, Wright JA, Zimmerman FJ, Bassett AI, Connell FA. Continuity of care is associated with high-quality care by parental report. Pediatrics. 2002;109:e54
  7. Co JP, Ferris TG, Marino BL, Homer CJ, Perrin JM. Are hospital characteristics associated with parental views of inpatient care quality?. Pediatrics. 2003;111:308–314
  8. Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family perspectives on the quality of pediatric palliative care. Archives of Pediatrics & Adolescent Medicine. 2002;156:14–19
  9. Davies B, Connaughty S. Pediatric end-of-life care: Lessons learned from parents. Journal of Nursing Administration. 2002;32:5–6
  10. Dokken DL, Heller KS, Levetown M, Rushton CH, Fleischman AR, Truog RD, et al. Quality domains, goals, and indicators of family-centered care of children living with life-threatening conditions. Newton, MA: Education Development Center, Inc; 2002;Retrieved April 5, 2005 from www.ippcweb.org
  11. Donalson M. Continuity of care. In:  Teno J editors. Toolkit of instruments to measure end-of-Life care (TIME). Providence, RI: Center for Gerontology and Health Care Research, Brown Medical School; 2000;Retrived April 5, 2005 from www.chcr.brown.edu/pcoc/Contin.htm
  12. Glesne C, Peshkin A. Becoming qualitative researchers. White Plains: Longman; 1992;
  13. Hilden JM, Emanuel EJ, Fairclough DL, Link MP, Foley KM, Claridge BC, et al. Attitudes and practices among pediatric oncologists regarding end-of-life care. Results of the 1998 American Society of Clinical Oncology Survey. Journal of Clinical Oncology. 2001;19:205–212
  14. Hilden JM, Himelstein BP, Freyer DR, Friebert S, Kane JR. Overview: Challenges unique to pediatric palliative care. (Chapter 6: Special Issues in Pediatric Oncology) In:  Foley K,  Gelband H editor. Improving palliative care for cancer. Washington, DC: National Academies Press; 2001;p. 1612–1698
  15. Himelstein BP, Friebert S, Lewandowski J, Toce S, Eastman K, Johnson D, et al. The Pediatric Special Interest Group of the American Academy of Hospice and Palliative Medicine. Statement to the Institute of Medicine Committee on Children Who Die and their Families. 2001;Retrieved April 5, 2005 from www.jasonprogram.org/statement.htm
  16. Homer CJ, Marino B, Cleary PD, Alpert HR, Smith B, Ganser CMC, et al. Quality of care at a children's hospital. Archives of Pediatrics & Adolescent Medicine. 1999;153:1123–1129
  17. Institute of Medicine. Approaching death: Improving care at the end of life. In:  Field MJ,  Cassel CK editor. Washington, DC: National Academies Press; 1997;
  18. Institute of Medicine. When children die: Improving palliative and end-of-life care for children and their families. In:  Field MJ,  Behrman RE editor. Washington, DC: National Academies Press; 2003;
  19. Institute of Medicine. Priority areas for national action: Transforming health care quality. In:  Adams K,  Corrigan JM editor. Washington, DC: National Academies Press; 2003;
  20. James L, Johnson B. The needs of parents of pediatric oncology patients during the palliative care phase. Journal of Pediatric Oncology Nursing. 1997;14:83–95
  21. Krogstad U, Hofoss D, Hjortdahl P. Continuity of hospital care: Beyond the question of personal contact. British Medical Journal. 2002;324:36–38
  22. Last Acts (2003). Precepts of palliative care for children, adolescents and their families. (Adapted by Last Acts Committee on End-of-Life Care, National Association of Neonatal Nurses, Association of Pediatric Oncology Nurses, Society of Pediatric Nurses, from Last Acts Palliative Care Task Force, Precepts of Palliative Care [1997].) Princeton, NJ: Author, Robert Wood Johnson Foundation. Retrieved August 24, 2005 from www.apon.org/files/public/last_acts_precepts.pdf
  23. Levetown M, Dokken D, Fleischman AR, Heller KS, Jose WS, Rushton C, et al. A pediatric palliative care institutional self-assessment tool (ISAT). Newton, MA: Education Development Center, Inc; 2002;Retrieved April 5, 2005 from www.ippcweb.org/quality.asp
  24. Maxwell JA. Qualitative research design: An interactive approach. Thousand Oaks, CA: Sage Publications; 1992;
  25. Meyer EC, Burns JP, Griffith JL, Truog RD. Parental perspectives on end-of-life care in the pediatric intensive care unit. Critical Care Medicine. 2002;30:226–231
  26. Miles MB, Huberman AM. Qualitative data analysis: An expanded sourcebook. 2nd ed.. London: Sage Publications; 1994;
  27. Reid R, Haggerty JJ, McKendry R. Defusing the confusion: Concepts and measures of continuity of healthcare. Final report. Prepared for the Canadian Health Services Research Foundation, the Canadian Institute for Health Information, and the Advisory Committee on Health Services of the Federal/Provincial/Territorial Ministers of Health 2002;Retrieved April 5, 2005 from www.chsrf.ca/final_research/commissioned_research/programs/pdf/cr_contcare_e.pdf
  28. Seidman IE. Interviewing as qualitative research. New York: Teachers College Press; 1991;
  29. Solomon MZ, Browning D, Dokken D, Fleischman A, Heller KS, Levetown M, et al. The Initiative for Pediatric Palliative Care curriculum: Enhancing family-centered care for children with life-threatening conditions. Newton, MA: Education Development Center, Inc.; 2003;Retrieved April 5, 2005 from www.ippcweb.org/curriculum.asp
  30. Strauss A, Corbin J. Basics of qualitative research. 2nd ed.. Newbury Park: Sage Publications; 1999;
  31. Weiss RS. Learning from strangers: The art and method of qualitative interview studies. New York: Free Press; 1994;

PII: S0882-5963(05)00048-5

doi: 10.1016/j.pedn.2005.03.005

Journal of Pediatric Nursing
Volume 20, Issue 5 , Pages 335-346 , October 2005

Article Tools