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26. Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death

Author

Macdonald, Mary Ellen, Liben, Stephen, Carnevale, Franco A., Rennick, Janet E., Wolf, Susan L., Meloche, Donald, and Cohen, S. Robin

Subjects
Parents -- Beliefs, opinions and attitudes, Children -- Death, Bereavement, Medical personnel
Abstract

Objectives. Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes, and attending memorial services. This study explores the significance of these acts for bereaved parents. Methods. Twelve parents whose children died in the ICU of a tertiary care pediatric hospital were interviewed, to explore their experiences of the death. Investigators reviewed transcripts and observational field notes. Multidisciplinary team triangulation was used to corroborate themes, with cross-case analysis. Results. Three themes emerged regarding parental experiences of staff members' acts, ie, (1) parents placed great importance on the hospital's memorial service and on staff members' presence at the service; (2) parents found it difficult to return to the hospital after the child's death but all attended the memorial service, finding some closure in the return; and (3) parents appreciated receiving cards and greatly valued staff members' efforts to telephone/visit and to attend the funeral. Months later, parents remembered positively which staff members engaged in which activities. Conversely, parents expressed disappointment when staff members did not engage in these activities and/or were absent from memorial/funeral services. Conclusions. Efforts to support families and to commemorate deceased children are appreciated by bereaved parents. Staff members' absences at commemorative events and a lack of supportive acts are noticed and regretted by families. Staff members and program administrators should attempt to arrange workloads to ensure meaningful contact between staff members and parents during the bereavement period. PICU, bereavement, child, palliative care, parental perception., Although many health care professionals make efforts to commemorate the death of a patient and to support the bereaved family, literature acknowledging and evaluating such acts is scant. When medical [...]

Published
2005

31. Contributors

Author

Adams, Leslie, primary, Baker, Justin N., additional, Berde, Charles B., additional, Bluebond-Langner, Myra, additional, Blume, Elizabeth D., additional, Boss, Renee, additional, Bower, Kimberly A., additional, Boyer, Debra, additional, Broniscer, Alberto, additional, Brooks, Janie, additional, Brown, Michelle R., additional, Cadell, Susan, additional, Campbell, Naimah, additional, Carroll, Jean Marie, additional, Case, Colette, additional, Chan, Melanie, additional, Chrastek, Jody, additional, Cohen, Harvey J., additional, Collins, John J., additional, Contro, Nancy, additional, Davies, Betty, additional, Davies, Dawn, additional, Alarcón, Pedro A. De, additional, Dellon, Elisabeth Potts, additional, Dokken, Deborah L., additional, Douglas, Helen, additional, Drake, Ross, additional, Dugan, Sarah, additional, Duncan, Janet, additional, Durall, Amy, additional, Ennis-Durstine, Reverend Kathleen, additional, Evan, Elana E., additional, Feudtner, Chris, additional, Fleck, Mary B., additional, Fofah, Onajovwe, additional, Frager, Gerri, additional, Frankel, Lorry R., additional, Freiberger, Dawn, additional, Freyer, David R., additional, Friebert, Sarah, additional, Friedrichsdorf, Stefan J., additional, Frost, Judith A., additional, Frost, Michelle, additional, Gamble, Amanda, additional, Gilmer, Mary Jo, additional, Goldman, Ann, additional, Goldsmith, Michelle, additional, Goldstein, Richard, additional, Green, Angela, additional, Guide, Shireen V., additional, Hain, Richard, additional, Hauer, Julie, additional, Hays, Ross M., additional, Helfand, Lynne, additional, Herbert, Anthony, additional, Hesselgrave, Joy, additional, Hexem, Kari, additional, Hockenberry, Marilyn, additional, Hutton, Nancy, additional, Jacobs, Shana S., additional, Jones, Barbara L., additional, Joselow, Marsha, additional, Kane, Javier R., additional, Kavanaugh, Karen, additional, Klick, Jeffrey C., additional, Kobler, Kathie, additional, Kramer, Robin, additional, Kreicbergs, Ulrika, additional, Lafond, Deborah A., additional, Lantos, John D., additional, Liben, Stephen, additional, MacConnell, Grace, additional, Mack, Jennifer W., additional, McCown, Michael, additional, Mulder, Gerit D., additional, Muriel, Anna C., additional, Muro-Garcia, Linda, additional, Naipaul, Amrita D., additional, Wells O'Brien, Helen, additional, Oleske, James, additional, Orloff, Stacy F., additional, Ortiz-Rubio, Paulina, additional, Pao, Maryland, additional, Papadatou, Danai, additional, Parker-Raley, Jessica, additional, Pizzo, Philip A., additional, Reaman, Gregory H., additional, Reichard, Reverend Wilma J., additional, Reineke, Anke, additional, Remke, Stacy S., additional, Robinson, Walter M., additional, Rood, Brian R., additional, Ross, Mary Elizabeth, additional, Rourke, Mary T., additional, Sehring, Sally, additional, Seton, Chris, additional, Shaw, Richard J., additional, Siden, Harold, additional, Staveski, Sandra, additional, Steele, Rose, additional, Steinhorn, David M., additional, Straatman, Lynn, additional, Sydnor-Greenberg, Nancy, additional, Temme, Renee, additional, Ullrich, Christina, additional, Vesel, Tamara, additional, Wallace, Joetta Deswarte, additional, Walsh, Sheila Lenihan, additional, Webster, M. Louise, additional, Widger, Kimberley, additional, Wiener, Lori, additional, and Wright, Joseph L., additional

Published
2011
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32. Contributors

Author

Alexander, Carla S., primary, Anderson, Wendy G., additional, Angelos, Peter, additional, Arnold, Robert M., additional, Bailey, F. Amos, additional, Benson, Al B., additional, Berger, Ann M., additional, Bernstein, Richard H., additional, Blacker, Susan, additional, Boni-Saenz, Alexander A., additional, Bonow, Robert O., additional, Bowman, Kerry W., additional, Bruera, Eduardo, additional, Buckman, Robert, additional, Campbell, Toby C., additional, Chaitin, Elizabeth K., additional, Chakraborty, Anita, additional, Chochinov, Harvey Max, additional, Cintron, Alexie, additional, Covinsky, Kenneth E., additional, Danilychev, Maria, additional, De Lima, Liliana, additional, Santina, Christopher Della, additional, Derse, Arthur R., additional, Downing, G. Michael, additional, Dudgeon, Deborah J., additional, Dunn, Geoffrey P., additional, Emanuel, Linda L., additional, Fainsinger, Robin L., additional, Ferris, Frank D., additional, Goldman, Russell, additional, Groninger, Hunter, additional, Gwyther, Liz, additional, Hart, Melissa J., additional, Hauser, Joshua M., additional, Hawryluck, Laura A., additional, Hunt, Susan, additional, Husain, Amna F., additional, Johnston, Bridget Margaret, additional, Kapo, Jennifer M., additional, Kenny, Nuala P., additional, Knight, Sara J., additional, Kundu, Tapas, additional, Liben, Stephen, additional, Librach, S. Lawrence, additional, Loscalzo, Matthew J., additional, Mah, Bill, additional, Marshall, Denise, additional, Martinez, Jeanne Marie, additional, Mehta, Rohtesh S., additional, Meier, Diane E., additional, Modi, Seema, additional, Moody, Sandra Y., additional, Mosoiu, Daniela, additional, Moss, Alvin H., additional, Moynihan, Timothy J., additional, Muir, J. Cameron, additional, Myers, Jeff, additional, Paice, Judith A., additional, Pearlman, Robert Allan, additional, Quest, Tammie E., additional, Rajagopal, M.R., additional, Reitschuler-Cross, Eva B., additional, Scandrett, Karen Glasser, additional, Schroder, Corinne D., additional, Sibbald, R. Gary, additional, Siegel, Arthur, additional, Simon, Melissa, additional, Soto, Eliezer, additional, Starks, Helene, additional, Stein, Regina M., additional, Thai, Vincent, additional, Vergo, Maxwell T., additional, Vig, Elizabeth K., additional, Vollrath, Annette M., additional, von Gunten, Charles F., additional, von Roenn, Jamie H., additional, Wenk, Roberto Daniel, additional, and Woo, Kevin Y., additional

Published
2011
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34. Contributors

Author

Alexander, Carla S., primary, Anderson, Wendy Gabrielle, additional, Angelos, Peter, additional, Arnold, Robert M., additional, Benson, Al B., additional, Berger, Ann M., additional, Berger, Stephen L., additional, Bernstein, Richard H., additional, Boni-Saenz, Alexander A., additional, Bonow, Robert O., additional, Bowman, Kerry, additional, Brescia, Frank J., additional, Bruera, Eduardo, additional, Buckman, Robert, additional, Campbell, Toby C., additional, Casarett, David J., additional, Chaitin, Elizabeth, additional, Cintron, Alexie, additional, Coleman, Sharon, additional, Covinsky, Kenneth E., additional, Danilychev, Maria, additional, de Lima, Liliana, additional, Della Santina, Christopher, additional, Derse, Arthur R., additional, Dudgeon, Deborah J., additional, Emanuel, Linda L., additional, Fainsinger, Robin L., additional, Douglas Ferris, Frank, additional, Groninger, J. Hunter, additional, Gwyther, Elizabeth, additional, Hart, Melissa J., additional, Hauser, Joshua M., additional, Hawryluck, Laura, additional, Hunt, Susan, additional, Jenkinson, Stephen, additional, Jones, Charmaine M., additional, Kapo, Jennifer, additional, P. Kenny, Nuala, additional, Knight, Sara J., additional, Liben, Stephen, additional, Librach, S. Lawrence, additional, Loscalzo, Matthew J., additional, Martinez, Jeanne M., additional, E. Meier, Diane, additional, Modi, Seema, additional, Moody-Ayers, Sandra Y., additional, Mosoiu, Daniela, additional, Moss, Alvin H., additional, Moynihan, Timothy J., additional, Muir, J. Cameron, additional, Paice, Judith A., additional, A. Pearlman, Robert, additional, Quest, Tammie E., additional, Rajagopal, M.R., additional, Schroder, Corinne D., additional, Siegel, Arthur, additional, Starks, Helene, additional, Stefaniuk, Kim, additional, Stein, Regina M., additional, Thai, Vincent, additional, Vig, Elizabeth K., additional, Vollrath, Annette M., additional, von Gunten, Charles F., additional, Von Roenn, Jamie H., additional, and Wenk, Roberto, additional

Published
2007
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42. National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care

Author

Widger, Kimberley, primary, Wolfe, Joanne, additional, Friedrichsdorf, Stefan, additional, Pole, Jason D., additional, Brennenstuhl, Sarah, additional, Liben, Stephen, additional, Greenberg, Mark, additional, Bouffet, Eric, additional, Siden, Harold, additional, Husain, Amna, additional, Whitlock, James A., additional, Leyden, Myra, additional, and Rapoport, Adam, additional

Published
2018
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43. Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care

Author

Stenekes, Simone, primary, Penner, Jamie L., additional, Harlos, Michael, additional, Proulx, Marie-Claude, additional, Shepherd, Erin, additional, Liben, Stephen, additional, Thompson, Genevieve, additional, MacConnell, Grace, additional, Grégoire, Marie-Claude, additional, and Siden, Harold (Hal), additional

Published
2018
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46. Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.

Author

Stenekes, Simone, Penner, Jamie L., Harlos, Michael, Proulx, Marie-Claude, Shepherd, Erin, Liben, Stephen, Thompson, Genevieve, MacConnell, Grace, Grégoire, Marie-Claude, and Siden, Harold (Hal)

Subjects
HEALTH attitudes, PALLIATIVE treatment, QUESTIONNAIRES
Abstract

Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care. [ABSTRACT FROM AUTHOR]

Published
2019
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48. F03-C Not There Yet: Pediatric Palliative Care in Canada 2002 – 2012

Author

Widger, Kimberley, primary, Davies, Dawn, additional, Dauost, Lysanne, additional, Liben, Stephen, additional, Rapoport, Adam, additional, Gregoire, Marie-Claude, additional, Vadeboncoeur, Christina, additional, Stenekes, Simone, additional, Cyr, Claude, additional, Sarpal, Amrita, additional, Roy, Helene, additional, Hodgson-Viden, Heather, additional, Robertson, Marli, additional, and Siden, Harold, additional

Published
2016
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49. D03-D Quality of Palliative Care for Children with Cancer

Author

Widger, Kimberley, primary, Friedrichsdorf, Stefan, additional, Wolfe, Joanne, additional, Liben, Stephen, additional, Pole, Jason D., additional, Bouffet, Eric, additional, Greenberg, Mark, additional, Husain, Amna, additional, Siden, Harold, additional, Whitlock, James A., additional, and Rapoport, Adam, additional

Published
2016
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