2.50
Hdl Handle:
http://hdl.handle.net/10755/163463
Category:
Abstract
Type:
Presentation
Title:
End of life care: Bereaved family perspective
Author(s):
Schultz, Alyce; Klem, Dawn; Springborn, Janet
Author Details:
Alyce Schultz, Maine Medical Center, Portland, Rhode Island, USA, email; schula@mail.mmc.org; Dawn Klem; Janet Springborn
Abstract:
Purpose: The purpose of this study was to survey families' perceptions regarding end of life care for a member who had experienced at least a 48 hour stay in our facility prior to death. Specific Aims: The general aim was to understand the experience of families surrounding the death of a member. Specifically, the aims addressed symptom management of the dying patient, communication regarding end of life care, decision making rights and desires, concerns and fears surrounding death, and the identification of problems and barriers perceived by families. Framework: The study was based on previous work by the City of Hope Medical Center and the Coalition for Palliative Care. This conceptual framework for end of life care includes physical and emotional management, spiritual and relationship needs, the health care environment, and communication with health professionals. Methods: The study design used multiple methods, including descriptive survey and focus groups. Of the 490 patients who died in our facility between 9/1/00 and 4/04/01, 308 were adults with stays of greater than 48 hours. During an introductory phone call placed to 177 families/close friends approximately six weeks after the death, 165 verbally agreed to complete a mailed survey. Potential respondents must have visited the patient at least three times during the hospital stay and at least once during the last 24 hours before death. The Bereavement Questionnaire, based on the conceptual framework, included 43 questions with adequate space to include narrative comments. The questionnaire is based from focus group responses and expert validation. Reliability evaluation indicated test/re-rest correlation of 0.86 and a total internal consistency correlation coefficient of 0.92. Using Cronbach's alpha, internal consistency coefficients ranged from 0.56 for the Emotional subscale to above 0.70 for the other subscales. Responses to the questions ranged from zero (no problems or issues) to 10 (several problem/issue). At the end of the survey, respondents in our study could indicate their interest in participating in a focus group. Three focus groups were conducted. Results and Conclusions: One hundred and two surveys (62%) were returned. There were no statistically significant differences in age, length of stay, or gender among the 143 patients whose families we could not reach, the 63 patients whose families did not complete the mailed survey, and the 102 patients with family responses. Those married at the time of the death were significantly more likely to respond and complete the survey than were widows/widowers or family members of single or divorced patients. Fatigue, shortness of breath, pain and mental status changes were identified as the most severe problems. Lower scores were reported for "opportunity to talk with family member about approaching death," "information on support groups," "physicians providing opportunity to discuss approaching death," nurses and other professionals providing opportunity to discuss approaching death," and "follow-up contact with physicians, nurses, and other professionals." Early analysis of the focus group findings provide in-depth elucidation of examples of "caring and non-caring behaviors," consistency of care needs, continuity of care including post-hospital follow-up, the burden of the designated family spokesperson, and "depersonalization" of the dying experience. Analysis will be completed within the next two months. The results clearly suggest that while the overall end of life care experience may be positive, one or more negative events are remembered long after the experience. A framework for addressing end of life care will be presented. Implications for Nursing Practice: Our findings support the need for improved education for all health care providers on provision of end of life care and communication with patients and families on end of life issues. The presentation will include strategies for "valuing" the perceptions of families and for addressing end of life care issues identified by family members. Further research is needed on provider perceptions of end of life care and educational needs.
Repository Posting Date:
27-Oct-2011
Date of Publication:
27-Oct-2011
Conference Date:
2002
Conference Name:
14th Annual Scientific Sessions
Conference Host:
Eastern Nursing Research Society
Conference Location:
University Park, Pennsylvania, USA
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.

Full metadata record

DC FieldValue Language
dc.type.categoryAbstracten_US
dc.typePresentationen_GB
dc.titleEnd of life care: Bereaved family perspectiveen_GB
dc.contributor.authorSchultz, Alyceen_US
dc.contributor.authorKlem, Dawnen_US
dc.contributor.authorSpringborn, Janeten_US
dc.author.detailsAlyce Schultz, Maine Medical Center, Portland, Rhode Island, USA, email; schula@mail.mmc.org; Dawn Klem; Janet Springbornen_US
dc.identifier.urihttp://hdl.handle.net/10755/163463-
dc.description.abstractPurpose: The purpose of this study was to survey families' perceptions regarding end of life care for a member who had experienced at least a 48 hour stay in our facility prior to death. Specific Aims: The general aim was to understand the experience of families surrounding the death of a member. Specifically, the aims addressed symptom management of the dying patient, communication regarding end of life care, decision making rights and desires, concerns and fears surrounding death, and the identification of problems and barriers perceived by families. Framework: The study was based on previous work by the City of Hope Medical Center and the Coalition for Palliative Care. This conceptual framework for end of life care includes physical and emotional management, spiritual and relationship needs, the health care environment, and communication with health professionals. Methods: The study design used multiple methods, including descriptive survey and focus groups. Of the 490 patients who died in our facility between 9/1/00 and 4/04/01, 308 were adults with stays of greater than 48 hours. During an introductory phone call placed to 177 families/close friends approximately six weeks after the death, 165 verbally agreed to complete a mailed survey. Potential respondents must have visited the patient at least three times during the hospital stay and at least once during the last 24 hours before death. The Bereavement Questionnaire, based on the conceptual framework, included 43 questions with adequate space to include narrative comments. The questionnaire is based from focus group responses and expert validation. Reliability evaluation indicated test/re-rest correlation of 0.86 and a total internal consistency correlation coefficient of 0.92. Using Cronbach's alpha, internal consistency coefficients ranged from 0.56 for the Emotional subscale to above 0.70 for the other subscales. Responses to the questions ranged from zero (no problems or issues) to 10 (several problem/issue). At the end of the survey, respondents in our study could indicate their interest in participating in a focus group. Three focus groups were conducted. Results and Conclusions: One hundred and two surveys (62%) were returned. There were no statistically significant differences in age, length of stay, or gender among the 143 patients whose families we could not reach, the 63 patients whose families did not complete the mailed survey, and the 102 patients with family responses. Those married at the time of the death were significantly more likely to respond and complete the survey than were widows/widowers or family members of single or divorced patients. Fatigue, shortness of breath, pain and mental status changes were identified as the most severe problems. Lower scores were reported for "opportunity to talk with family member about approaching death," "information on support groups," "physicians providing opportunity to discuss approaching death," nurses and other professionals providing opportunity to discuss approaching death," and "follow-up contact with physicians, nurses, and other professionals." Early analysis of the focus group findings provide in-depth elucidation of examples of "caring and non-caring behaviors," consistency of care needs, continuity of care including post-hospital follow-up, the burden of the designated family spokesperson, and "depersonalization" of the dying experience. Analysis will be completed within the next two months. The results clearly suggest that while the overall end of life care experience may be positive, one or more negative events are remembered long after the experience. A framework for addressing end of life care will be presented. Implications for Nursing Practice: Our findings support the need for improved education for all health care providers on provision of end of life care and communication with patients and families on end of life issues. The presentation will include strategies for "valuing" the perceptions of families and for addressing end of life care issues identified by family members. Further research is needed on provider perceptions of end of life care and educational needs.en_GB
dc.date.available2011-10-27T11:08:02Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T11:08:02Z-
dc.conference.date2002en_US
dc.conference.name14th Annual Scientific Sessionsen_US
dc.conference.hostEastern Nursing Research Societyen_US
dc.conference.locationUniversity Park, Pennsylvania, USAen_US
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.-
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