Myra Bluebond-Langner

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Myra Bluebond-Langner is Professor and True Colours Chair in Palliative Care for Children and Young People at University College London, Institute of Child Health. In this capacity she also heads the Louis Dundas Centre for Children’s Palliative Care – an academic and clinical partnership involving the Institute of Child Health and Great Ormond Street Hospital for Children. She is also Board of Governors’ Professor of Anthropology and founder and former director of the Rutgers University Center for Children and Childhood Studies.

Myra Bluebond-Langner is the recipient of: the Margaret Mead Award from the American Anthropological Association and Society for Applied Anthropology (1987), the Warren Susman Award for Excellence in Teaching from Rutgers University (1990), the Children’s Hospice International Charles Corr Award for contributions to the literature on children and death (1997), the Association for Death Education and Counseling Research Recognition Award (2000), the Rutgers University Board of Trustees Award for Excellence in Research (2009) and the University of Illinois, Colleges of Arts and Sciences, Alumni Association Achievement Award (2009). She was recently elected an Honorary Fellow of the Royal College of Paediatrics and Child Health (2013).

Myra Bluebond-Langner has received grants and fellowships from the: American Cancer Society, American Council of Learned Societies, Baker-Nord Center for the Humanities, Department of Health (England), The Health Foundation (England), Johnson&Johnson Family of Companies, The Schumann Fund for NJ, National Endowment for the Humanities, National Science Foundation, Verizon Corporation, as well as the Annie E. Casey, Geraldine Dodge, Olivia Hodson, Howard, Stanley Thomas Johnson, John S. and James L. Knight,  Kurr, William Penn, and Fannie E. Rippel Foundations.

Author of several articles in journals and edited collections; she is perhaps best known for her books: The Private Worlds of Dying Children (Princeton University Press, 1978), In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child (Princeton University Press, 1996) and The Psychosocial Aspects of Cystic Fibrosis (with Denise Angst and Bryan Lask, Arnold and Oxford University Press Publishers, 2001).

Myra Bluebond-Langner is the editor of the Rutgers University Press Book Series in Childhood Studies, the first multi-disciplinary book series in the field. She is associate editor of the British Medical Journal: Supportive and Palliative Care and also currently serves on the editorial boards of: Children and Society, Childhoods Today, Clinical Child Psychology and Psychiatry, ETHOS: Journal of the Society of Psychological Anthropology, and Omega: Journal of Death, Dying and Bereavement.

Myra Bluebond-Langner received her BA (1969) from Temple University, Philadelphia, PA and her MA (1971) and PhD (1975) from University of Illinois, Urbana, Illinois. She is married to Richard W. Langner, PhD. They are the parents of Rachel Olga Bluebond-Langner, MD and Jessica Jane Bluebond-Langner, JD.

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Research

Current Projects

Mixed-Method Research (including focus groups and semi-structured open-ended interviews with parents and healthcare professionals, appropriate child centered methods with patients, and review of medical notes)

• Bayliss J, Gibson F, Hallman J, Bluebond-Langner M.  The Place of Massage and Relaxation Therapy in Pain and Symptom Management for Children with Cancer: Evaluation of a Current Programme (2012-14)

Ethnographic Research

• Bluebond-Langner M, [PI], Hargrave D, Kelly P, Gibson F, Bayliss J.  Decision Making for Children with High Risk Brain Tumours: A Prospective Study of the Exchange and Processing of Information Amongst Parents, Children and Clinicians Providing Guidance for Clinical Consultations (2013-15).

Pilot Study Utilizing Grounded Theory in the analysis of semi-structured, open-ended interviews            

• Bluebond-Langner M, Jones. L, Kelly, P, Sterling C, Craig F. Helmsley, J, Franck L. Advance Care Planning For Children and Young People With Life Threatening Conditions and Life Limiting Illness: Parents’ Experiences in Planning for Their Child’s Care and Treatment (2011-13)

Cochrane Review

• Jones L, Beecham E, Laddie J, Howard R, Candy B, McCulloch, R, Bluebond-Langner M. Pharmacological Interventions for Pain in Children and Adolescents with Life-limiting Conditions (registered June 2012).

Case Series Review

• Rajapakse D, Kelly P, Crocker J. Rasdall E, Hemsley J, Bluebond-Langner M.  Break Through Pain in Children with Life-Limiting Conditions and Life-Threatening Illnesses: A Retrospective Case Series Review (2012-2014)

Selected Publications

Books:

In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child. Princeton: Princeton University Press, 1996. Paperback edition: May, 2000.

The Private World of Dying Children. Princeton: Princeton University Press, 1978. * First paperback edition, 1980. Remains in print.
* Translated into Japanese and published by Nihon, Kango, Kyokai, Shuppankai. Tokyo, Japan. 1990.

Edited Collections:

Children, Childhoods and Childhood Studies with Jill Korbin. Special In Focus Section of The American Anthropologist. June 2007.

Psychosocial Aspects of Cystic Fibrosis. With Bryan Lask and Denise Angst. London: Arnold Publishers, NY: Oxford University Press, 2001.

Research in Thanatology: A Critical Appraisal. Special Issue of Omega, Volume 18, Number 4, Spring, 1988.

Selected Articles:

Llewellyn H, Jones L, Kelly P, Barnes J, O’Gorman B, Craig F, Bluebond-Langner M.  Understanding and Meeting the Spiritual Needs of Children and Young People with Life-Threatening and Life-Limiting Conditions and Their Families: Perspectives and Experiences of Health Care Professionals in the Community. ­BMJ Supportive and Palliative Care doi:10.1136/bmjspcare-2012-000437.  (Accepted for publication June 2013. Available on line 27 June 2013)  (In press July 2013)

Bluebond-Langner M, Beecham E, Candy B, Langner R, Jones L.  Preferred Place of Death for Children and Young People with Life-Limiting Conditions and Life-Threatening Illnesses: A Systematic Review to Inform Policy. Palliative Medicine (Accepted for publication February 2013) (Available online 31 May 2013 PMID: 23612958.) (In press 2013.)

“Palliative Care Education in Neonatal Units: Impact on Knowledge and Attitudes.” Twamley K, Kelly P, Moss R, Mancini A, Craig C, Koh M, Polonsky R, Bluebond-Langner M.  In BMJ Supportive and Palliative Care 2013; 3: 213-220  June 2013. (Accepted for publication November 2012) (Available online 14 Dec 2012: doi:10.1136/ bmjspcare-2012-000336)

“Underlying Barriers to Referral to Paediatric Palliative Care Services: Knowledge and Attitudes of Health Care Professionals in a Paediatric Tertiary Centre in the UK.”. Twamley K, Craig F, Kelly P, Hollowell DR, Mendoza P, Bluebond-Langner M.  Journal of Child Health Care . (Accepted for publication October 2012) (Available online 22 April 2013. DOI: 10.1177/1367493512468363) (In press 2013)

Mancini A, Kelly P, Bluebond-Langner M.  “Training Neonatal Staff for the Future in Neonatal Palliative Care.  In Seminars in Fetal and Neonatal Medicine 2013 April; 18(2):111-5.  (Accepted for publication October 2012) (Available online 16 November 2012 doi: 10.1016/j.siny.2012.10.009)

“International Multi-Professional Course in Paediatric Palliative Care: Benefits and challenges”. Wager J, Zernikow B,

 Drake R, Papadatou D, Hübner-Möhler B, Bluebond-Langner M. In Journal of Palliative Medicine Vol 16 (1) 96-99. January 2013. (Accepted for publication August 2012).

“Children’s Views of Death.” With Megan Nordquest Schwaille and Amy DeCicco. In Oxford Textbook of Palliative Care for Children. Ann Goldman, Stephen Lieben, & Richard Hain, editors. Oxford University Press. 2012.

“The Team in Pediatric Palliative Care: Development, Organization, Functionality and Effectiveness,” with Danai Papadatou and Ann Goldman. In Textbook of Interdisciplinary Pediatric Palliative Care. Joanne Wolfe, Pam Hinds and Barbara Sourkes (eds) PA: Elsevier Publishers. 2011.

“Involving Children In Decisions About Their Care and Treatment,” with Jean Belasco and Marla Wander.  In Nursing Clinics of North America. Vol. 45 (3) 329-345. September 2010 (Special Issue on palliative and end-of-life care).

 “Adolescents as Health Agents and Consumers: Results of a Pilot Study of the Health and Health-Related

Behaviors of Adolescents Living in a High-Poverty, Urban Neighborhood” with Robert Atkins, Nikki Read, Jerri Priestly and Dan Hart. In Journal of Pediatric Nursing. Vol 25 (5) 382-392.November 2010  (Available on line August 24, 2009)

“It’s Back: Children’s Understanding and Communication About their Cancer When Cure Is Not Likely”  With Megan Nordquest Schwaille. In Healing the World’s Children: Interdisciplinary Perspectives on Child Health in the Twentieth Century. George Weisz, Cynthia Comacchio and Janet Golden, editors. Canada: McGill-Queens University Press. 2008.

“I’m an anthropologist”: Adolescents Studying Children and Each Other.”Anthropology News Vol 49, No. 4, April 2008.

“Using Participant Observation in Pediatric Health Care Settings: Ethical Challenges and Solutions” with  F. Carnivale, M.E. MacDonald and P. McKeever.  In Journal of Child Health Care  Vol. 12. No.1, January 2008

“Understanding Parents’ Approaches to Care and Treatment of Children With Cancer When Standard   Therapy Has Failed” with Jean Belasco, Ann Goldman and Carmen Belasco. Accepted February 26,   2007 for publication in Journal of Clinical Oncology, Vol.25, No.17, June 10, 2007.

“Challenges and Opportunities in the Anthropology of Childhood” With Jill Korbin inThe American  Anthropologist. Vol.109, No.2, June, 2007

“Children’s Views of Death.” With Amy DeCicco In Oxford Textbook of Palliative Care for Children. Ann Goldman, Stephen Lieben, & Richard Harnes editors. Oxford University Press. 2006 
[NB Volume received first prize for new edited book at 2006 Royal Society of Medicine Book Awards] 

“Involving Children with Life-Shortening Illnesses in Decisions About Participation in Clinical Research: A Proposal for Shuttle Diplomacy and Negotiation.” In Ethics and Research with Children. Eric Kodish, editor. Oxford University Press. 2005.

“Children’s Views of Death and Illness.” In Oxford Textbooks of Pediatric Palliative Care. Ann Goldman, Stephen Lieben, & Richard Harnes, editors. Oxford University Press. 2005

“A Child’s View of Death.” In Current Paediatrics, Volume 4, Number 4, December, 1994.

“Olga’s New Year.” In Dying, Death and Bereavement: Theoretical Perspectives and Other Ways of Knowing. Inge Corless, Barbara Germino and Marianne Pittman, editors. Boston: Jones and Bartlett. Fall, 1993.

“Chronically and Terminally Ill Children: Research Directions for the 90’s.” In Loss, Grief and Care, Volume 6, Number 1, pages 61-72, 1992. 
[NB Permission also given for reprinting in The Thanatology Community and the Needs of the Movement, Elizabeth Clarke, editor. New York: Haworth Press, 1992.]

“The Impact of AIDS Education on College Student’s AIDS Related Knowledge, Attitudes and Behavior.” With Ted Goertzel. In Journal of American College Health, Volume 40, Number 2, pages 87-92, September, 1991.

“Living With Cystic Fibrosis: The Well Sibling’s Perspective.” In Medical Anthropology Quarterly, New Series, Volume 5, Number 2, pages 133-152, June 1991.

“Pediatric Cancer Patient’s Peer Relationships The Impact of an Oncology Camp Experience.” With Dale Perkel and Ted Goertzel. In Journal of Psychosocial Oncology, Volume 9, Number 2, pages 67-80, Summer, 1991.

“Living With Cystic Fibrosis: A Family Affair.” In Young People and Death, John D. Morgan, editor. Philadelphia: Charles Press, 1991.
[NB This paper is a revised and updated version of an article with the same title that appeared in Cystic Fibrosis: Soma and Psyche, Daniel Schidlow, editor. Pennsylvania: McNeil Laboratories, 1987.]

“Children’s Knowledge of Cancer and Its Treatment: The Impact of An Oncology Camp Experience.“ With Dale Perkel and Ted Goertzel. In Journal.of Pediatrics, Volume 116, Number 2, pages 207-214, February, 1990.
[NB Abstract and commentary in Pediatric Alert, Volume 15, Number 7, March, 1990].

“Children, Dying.” In The Encyclopedia of Death, Robert Kastenbaum, editor-in-chief. Arizona: Oryx Press, 1989. 

“Siblings of Dying Children.” In The Encyclopedia of Death, Robert Kastenbaum, editor-in-chief. Arizona: Oryx Press, 1989.

“Illness and Death in the Lives of Children and Their Families.” In Death Studies, Volume 13, Number 1, pages 1-16, Spring, 1989.
[NB Reprinting at the request of the editor, Ken Doka, In Children Mourning, Mourning Children. Bristol, Pa: Taylor and Francis and the Hospice Foundation of America, 1995].

“Wither Thou Goest?” In Omega,Volume 18, Number 4, pages 257-263, Spring, 1988. 

“Knowing, Concealing And Revealing: Communication in Terminally Ill Children.” InChildren and Their Organizations. T. Sieber & A. Gordon, editors. Boston: G.K. Hall & Co., 1981.

“Comments on Sex, Incest and Death: Initiation Rites Reconsidered.” In Current Anthropology, Volume 18, Number 2, page 192, 1977. 

“Meanings of Death to Children.” In New Meanings of Death. Herman Feifel, editor. New York: McGraw-Hill, 1977.
[NB: This book received the 1977 American Journal of Nursing Book Award]

“How I Came to Study Dying Children.” In Rhetorical Considerations, Harry Brendt and William Lutz, editors. Cambridge: Withrop (a division of Prentice Hall), 1976.

“I Know, Do You?: A Survey of Awareness, Communication and Coping in Terminally Ill Children.” In Anticipatory Grief. Bernard Schoenberg et al, editors. New York: Columbia University Press, 1974.

Honors and Awards

April 2009	Rutgers University Board of Trustees Award for Research Excellence
April 2000	Association for Death Education and Counseling Research Recognition Award
November 1997	Charles A. Corr Lifetime Achievement Award in Literature On Children and Death. Presented by Children’s Hospice International
May 1990	Warren I. Sussman Award for Excellence in College Teaching. Presented by Rutgers University
November 1987	Margaret Mead Award. Presented jointly by the American Anthropological Association and The Society for Applied Anthropology
June 1969	Milton Moses Memorial Award in Anthropology, Temple University
June 1965	Albert Sachs Memorial Prize for General Excellence in All Studies, Gratz College

Grants and Fellowships

RESEARCH:

Olivia Hodson Foundation Grant (co applicant) (2010-2012)
Department of Health, United Kingdom grant (2011).
Baker-Nord Center for the Humanities Fellowship, Case Western Reserve University (Fall 2005). 
National Endowment for the Humanities Fellowship (2005; 1981-82);
Stanley Thomas Johnson Foundation (Switzerland) (2002-2004);
Johnson and Johnson Family of Companies (2003-2004; 2002-2003, 2001-2002, 2000-2001, 2005-2006; 2006-2007); 
REACH Fund, Great Ormond Street Hospital, London, England (2001-2003);
Fannie E. Rippel Foundation (2000-2002);
Campbell Soup Foundation (2000);
National Hospice and Palliative Care Organization (2001-2002;1999-2000);
Olivia Hodson Foundation Fellowship (1998-1999);
American Council of Learned Societies Fellowship (1992-1993);
Howard Foundation Fellowship (1988-1989);
American Cancer Society Grant (1986-87);
National Science Foundation Grant (1984-87);
Rutgers University Research Council Grants (1987-88; 1984-85; 1980-81; 1975);
Rutgers University Research Council Study Leaves (1985; 1977);
Rutgers University Research Council Summer Fellowship (1976);
National Science Foundation Fellowship-Traineeship (1970-74);
University of Illinois Summer Research Grant (1971);
Philadelphia Board of Education Tuition Scholarship (1965-1969).

For Evaluation Research For Intervention, Demonstration, Education and Service Development Projects in Palliative Care for Children and Young People, Department of Health, England (2010-2011)

INTERVENTION, DEMONSTRATION, SERVICE AND OUTREACH PROJECTS in CAMDEN, NJ: 

Camden Development Block Grant (2004-2005).
Aetna Foundation (2003-2005. 
Rite Aide Foundation (2004-2005). 
The Wm. Penn Foundation (2003-2005, Summer 2002).
The Kurr Foundation (2002-2003).
Verizon Foundation (2002-2003).
Geraldine Dodge Foundation (2002-2003, 2003-2004).
The Schumann Fund for New Jersey (2002-2003).
Annie E. Casey Foundation (2001-2002).
John S. and James L. Knight Foundation (2001-2003; 2000-2001).

UNDERGRADUATE EDUCATION

Committee on Multiculturalism Teaching Grant, Rutgers University (1997-1998). 
Rutgers University Dialogues Program (2002-2003)
Department of Higher Education of New Jersey, Technological Literacy Program (1987-90). 
Department of Higher Education of New Jersey, Humanities Grants Program (1984-85). 
Rockower Foundation Teacher Initiated Experimentation Grant (1974).

CENTER FOR CHILDREN AND CHILDHOOD STUDIES

The Wm. Penn Foundation (2003-2005, Summer 2002).
The Kurr Foundation (2003, 2004, 2005).
Johnson and Johnson Family of Companies (2003-2004; 2002-2003, 2001-2002, 2000-2001).
Rutgers University SROA Program (2001-2002, 2000-2001).
Rutgers University Board of Governors (2002-2003)