Completed Studies

Development of tool to assess knowledge, attitudes, experiences with pediatric advance care planning

Investigators: Maria Rugg RN MN CHPCN (c), Dr. Christine Harrison PhD

The purpose of this pilot study is to modify a tool that measures knowledge of, attitudes towards and the experience with advance care planning among nurses and establish the face and content validity of this modified tool among health care professionals caring for children facing life threatening illness.

Funding Agency

This study was funded by the Evidence Based Nursing Fellowship at The Hospital for Sick Children and The Grace Evelyn Simpson Reeves Endowment
SickKids Foundation ~ Nursing Research Support Program

Summary

The purpose of this pilot study is to modify a tool that measures knowledge of, attitudes towards and the experience with advance care planning among nurses and establish the face and content validity of this modified tool among health care professionals caring for children facing life threatening illness.

In general, most of the literature focuses on adults, surrogates or health care professionals understanding of or use of advance care directives. As is suggested by available research (Steele, 2004), living with a child who has progressive life threatening illness has a profound impact on families, often resulting in a multitude of disruptions that affect their quality of life. As HCP’s, we often intervene to promote the health and welfare of families but we often do not have a clear understanding of what kinds of support are appropriate or how to provide that support (Bartholome, 1993). What generally impedes that type of support is; lack of knowledge about legislation or what to say,, experience in end of life care and our own attitudes around end of life care planning.(Solomon et al,2005)

As no measure exists for assessing knowledge, experience and attitudes with advance care directives and or advance car planning within pediatric health care it is crucial one be adapted and validated.

What we Learned

We continue to work on summarizing the findings and at this point we do not have any firm data to report on

What’s Next

We will be using the tool to do a multi-site study that actually measures knowledge , skill and attitude of pediatric health care professionals. I would also like to look at parents experience with advance care planning.

References
Bartholome, W.G.(1993). Care of the dying child; the demands of ethics. Second Opininion,18(4); 24

Burns, J., Mitchell, C., Griffith, J.L., & Truog, R. (2001). End of life care in the pediatric intensive care unit; attitudes and practices of pediatric critical care physicians and nurses. Critical Care Medicine 29, (3), 658-664.

Charles, C. Gafni, A., & Whelan, T. (2000). How to improve communication between doctors and patients. British Medical Journal 320; 1220-1221

Charles., Gafni,A.& Whelan,T.(1999). Decision-making in physician-patient encounter: revisiting the shared treatment decision-making model. Social Science & Medicine, 49:651-661

Frank, L.S. & Callery,P. (2004).Re-thinking family-centered care across the continuum of child’s healthcare. Child: Care, Health and Development, 30,(3);265-277

Hasson, F., Keeney, S.& MacKenna, H.(2000). Research guidelines for the Delphi survey technique. Journal of Advanced Nursing, 32(4), 1008-1015.

Hinds,P.S.,Oakes,L.,Quargneti,A.,Furman,W.,Bowman,L.,Gilger,E.,Gattuso,J.,
Martinson, I., Yi, K.H.,&  Drew, D. (2000). An international feasibility study of parental decision making in pediatric oncology. Oncology Nursing Forum, 27, (8), 1233-1243

Jezewski ,M.& Finnell,D.(1998).The meaning of DNR status; oncology nurses’ experiences with patients and families. Cancer Nursing, 21(3), 212-221

Jezewski, M., Meeker, M., & Schrader, M.(2003).Voices of oncology nurses. Cancer Nursing, 2(2), 105-112.

Karel,M.J. ( 2000).The assessment of values in medical decision making. Journal of Aging Studies,14(4), 403-422

Kirschbaum, M.S. (1996). Support decisions for children; what do parents value? Advances in Nursing Science,19(1); 51-71

Lantos J.D. & Miles, S.H.(1989). Autonomy in adolescent medicine; framework for decisions about life sustaining treatment. Journal of Adolecscent Health Care, 10(6):460-466

Mack, J.W.,  Hilden, J.M.,  Watterson, J., Moore, C.,  Turner, B., Grier, H., Weeks, J.C., & Wolfe, J. (2005). Parent and physician perspectives on quality of care at the end of life in children with cancer. Journal of Clinical Oncology, 23(36):9155-9161

McAlil, L.G., Hudson-Barr, D.C., Gunning, R.S., & Rowbottom, L.A.(2000). The use of advance directives with adolescents. Pediatric Nursing, 26(5), 471-480.

Meert, K.L., Thurston,C.S., Sarnaik, A.P.(2000). End of life decision making and satisfaction with care ; parental perspectives,1(2);179-185

Merrijoy, K.,  Bourgeault, I.L., Hebert, P.C. & Dunn, E.V. (1993). Advance directives; the views of health care professionals. Canadian medical Association Journal, 148 (8), 1331-1338

Mims, J. & Crisham, P.(1996) Healthcare management of children with cognitive and physical disabilities: to treat or not to treat. Journal of Neuroscience Nursing, 28(4), 201-215
Morrison,D.F.(1975).Multivariate Statistical Methods. New York: McGraw-Hill.

Pritchard, M & Davies, B.(2002). End of life in pediatric oncology: how clinical practice leads to research. Journal of Pediatric Oncology Nursing 19, (6),191-197
Emanuel, L.L.(2003). Research in Advance Care Planning In R.K Portenoy & E.Bruera (Eds.), Issues in Palliative Care Research (pp 261-273). New York: Oxford University Press.

Solomon, M., Sellers, D., Heller., K.S., Dokken, D., Levetown, M., Rushton,C., Truog, R. & Fleischman, A.R. (2005). New and lingering controversies in pediatric end –of-life care. Pediatrics, 116(4), 872-883.

Steele, R. (2004). Navigating uncharted territory; experiences of families when a child is dying. Journal of Palliative Care, 21(1), 35-43.

Sumsion,T. (1998). The Delphi technique: an adaptive research tool. British Journal of Occupational Therapy, 61, 4, 153-156

Towle, A.& Godolphin, W. Framework for teaching and learning informed decision making. (1999). British Medical Journal, 319,766-771

Young, B., Dixon-Woods, M., Windridge, K.C., & Heney, D. (2003).Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. British Medical Journal, 326(5), 1-5

Walsh-Kelly C. (1999). Advance directives in a pediatric emergency department. Pediatrics,10, 826-830.