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It's About Time: Interactions between Parents with Advanced Cancer and their Adolescent Children
380
Schedule with Abstracts
Paper Session (411) Pediatric Supportive Care Program: Parents Perspective of Medical Decisions and Palliative Decisions for Children with Cancer JoAnne Auger, RN, RCHSD, San Diego, CA. Anke Reineke, PhD, RCHSD, San Diego, CA. Cassie Kline, UCSD, San Diego, CA. Jennifer Willert, MD, Rady Children’s UCSD, San Diego, CA. Kim Bower, MD, Institute for Palliative Medicine at San Diego Hospice, San Diego, CA. Tamara Maginot, Rady Children’s Hospital San Diego, San Diego, CA. Deborah Schiff, Rady Children’s Hospital San Diego, San Diego, CA. (All speakers have disclosed no relevant financial relationships.) Objectives 1. Describe factors that can help facilitate patient-provider communication by using a Decision-Making Tool. 2. Discuss the impact of the Decision-Making Tool and supportive care team on end-of-life decisions. 3. Recognize the importance of the Decisionmaking tool to increase family and patient support. I. Background. Approximately 500,000 children cope with while another 50,000 children die from life-threatening conditions each year in the United States. Improving palliative and end-of-life care for children is a public health priority. Pediatric supportive care, with an emphasis on enhanced patient-provider communication using the decisionmaking tool (DMT), symptom management, and quality of life, are important components in the care of children with life-threatening conditions. II. Research Objectives. This study aims to understand parents’ perspective on three essential areas: (i) impact of care conference in aiding parents in end-of life decisions, (ii) impact of DMT and supportive care team on end-of-life decisions, and (iii) symptoms and quality of life of their child. III. Methods. On the hematology/oncology unit of Rady Children’s Hospital San Diego, all parents of children with cancer that had been identified as high risk diagnosis received after their care conference the DMT. English and Spanish speaking parents were asked to participate in the study within four weeks after receiving the DMT. Parents decision-making process was measured with a 38-item self administered questionnaire and qualitative questions designed by project staff.
Vol. 39 No. 2 February 2010
IV. Results. Currently 12 patients ranging from infancy to 18-years-old have been enrolled in the study. Parents consented to participate in the survey, and preliminary results suggest that 80% reported to strongly agree that the DMT improved communication between family and health care provider. Further, 90% of the parent reported that they strongly agreed that the supportive care team was available for questions and concerned as their child progressed through the treatment plan. This is an ongoing study and results will be presented at the conference V. Conclusion. This knowledge can guide professionals in helping parents making informed treatment decisions. Positive outcome for the parents include an increase in family and patient support and it can improve the quality of life for the child. Domains Structure and Processes of Care; Ethical and Legal Aspects of Care
It’s About Time: Interactions between Parents with Advanced Cancer and their Adolescent Children Denice Sheehan, PhD RN, Kent State University, Kent, OH. (Sheehan has disclosed no relevant financial relationships.) Objectives 1. Describe two ways adolescents know their parent is dying. 2. Discuss three ways parents and their adolescents make the most of their time together when the parent is diagnosed with advanced cancer. 3. Identify three implications for clinical practice. I. Background. Most of the published literature about parents with cancer and their children focuses on distress, functional changes within the family, and economic burdens. Few researchers have considered end-of-life as an opportunity for growth and healing. II. Research Objectives. Develop a theoretical framework to explain interaction patterns between parents with advanced cancer and their adolescent children. Identify strategies to prepare adolescents for their lives after the parent’s death. III. Methods. Grounded theory methods using unstructured interviews were used to illuminate
Vol. 39 No. 2 February 2010
Schedule with Abstracts
the processes ill parents and their adolescent children used to manage their lives within the context of the parent’s impending death, and to respond to changes over time. IV. Results. The model depicts the ill parents and adolescents responses to the realization that their time together was limited. Their main concern was not having enough time together. In response, they described a four-stage process for optimizing the time they had left together. Limited time together led to spending more time together and developing means to extending their time together after the parent’s death. For some adolescents, the process culminated in a choice to give up their time with their ill parents when dying became too difficult to watch. V. Conclusion. The findings provide a better understanding of how families respond to the problem of not having enough time together, how adolescents realize their time with their parent will be limited and how some adolescents decide they are ready to give up their time with their parent in order to end the suffering. VI. Implications for Research, Policy, or Practice. The study model could help clinicians introduce discussions of the concept of time to parents with advanced cancer and their adolescent children. The model might guide families in developing strategies for optimizing the time they have left and alert professionals to the many ways that families try to make it better for one another. Domains Psychological Aspects of Care; and Social Aspects of Care
Can You Hear Me Now? The Experience of a Deaf Family Member Surrounding the Death of Loved Ones Karen Kehl, PhD RN ACHPN, University of WisconsineMadison, Madison, WI. Constance Gartner, University of WisconsineMadison, Madison, WI. (All speakers have disclosed no relevant financial relationships.) Objectives 1. Describe the unique nature of communication with the Deaf. 2. Describe at least one challenge faced by a Deaf family member surrounding the death of a loved one. 3. Identify at least one way to improve care for Deaf patients and family members at the end-of-life.
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I. Background. Little has been published about the experience of Deaf individuals when a loved one dies. Deaf (with a capital D) refers to those who identify socially and culturally with the Deaf community. American Sign Language (ASL) is the primary language of the Deaf in the U.S. and is considered the third most common language in the U.S. Deaf family members face specific challenges when a family member is dying. The question, ‘‘What are the challenges faced by a Deaf family member surrounding the death of a loved one?’’ guided this inquiry. II. Case Description. This is a case study in which one participant, a college-educated older Deaf man, was interviewed about the challenges he faced interacting with the healthcare system as three of his loved ones were dying. The interview was videotaped in American Sign Language, translated into English, transcribed and analyzed using content analysis, and the continuous comparative analysis method. Deaf family members face challenges that affect communication with both the dying person and health care professionals. Patient-family communication issues included physical challenges and financial challenges. Lack of cultural competence concerning the Deaf community created challenges communicating with professionals. Decision-making was also a challenge. III. Conclusion. Healthcare professionals need to be aware of the unique needs of Deaf patients and family members and should consider interventions beyond writing to improve communication. Current technology provides numerous options to better meet the needs of Deaf patients and family members. Domains Structure and Processes of Care; Cultural Aspects of Care
Paper Session (412) Palliative Care Partners with the Hematologic Malignancy (HM) Unit Kathy Selvaggi, MD, West Penn Allegheny Health System, Pittsburgh, PA. Susan Jessell, West Penn Allegheny Health System, Pittsburgh, PA. Sarah Miller, DO, Pittsburgh, PA. Janet Abrahm, MD FAAHPM, Dana-Farber Cancer Institute, Boston, MA. (All speakers have disclosed no relevant financial relationships.)
Schedule with Abstracts
Paper Session (411) Pediatric Supportive Care Program: Parents Perspective of Medical Decisions and Palliative Decisions for Children with Cancer JoAnne Auger, RN, RCHSD, San Diego, CA. Anke Reineke, PhD, RCHSD, San Diego, CA. Cassie Kline, UCSD, San Diego, CA. Jennifer Willert, MD, Rady Children’s UCSD, San Diego, CA. Kim Bower, MD, Institute for Palliative Medicine at San Diego Hospice, San Diego, CA. Tamara Maginot, Rady Children’s Hospital San Diego, San Diego, CA. Deborah Schiff, Rady Children’s Hospital San Diego, San Diego, CA. (All speakers have disclosed no relevant financial relationships.) Objectives 1. Describe factors that can help facilitate patient-provider communication by using a Decision-Making Tool. 2. Discuss the impact of the Decision-Making Tool and supportive care team on end-of-life decisions. 3. Recognize the importance of the Decisionmaking tool to increase family and patient support. I. Background. Approximately 500,000 children cope with while another 50,000 children die from life-threatening conditions each year in the United States. Improving palliative and end-of-life care for children is a public health priority. Pediatric supportive care, with an emphasis on enhanced patient-provider communication using the decisionmaking tool (DMT), symptom management, and quality of life, are important components in the care of children with life-threatening conditions. II. Research Objectives. This study aims to understand parents’ perspective on three essential areas: (i) impact of care conference in aiding parents in end-of life decisions, (ii) impact of DMT and supportive care team on end-of-life decisions, and (iii) symptoms and quality of life of their child. III. Methods. On the hematology/oncology unit of Rady Children’s Hospital San Diego, all parents of children with cancer that had been identified as high risk diagnosis received after their care conference the DMT. English and Spanish speaking parents were asked to participate in the study within four weeks after receiving the DMT. Parents decision-making process was measured with a 38-item self administered questionnaire and qualitative questions designed by project staff.
Vol. 39 No. 2 February 2010
IV. Results. Currently 12 patients ranging from infancy to 18-years-old have been enrolled in the study. Parents consented to participate in the survey, and preliminary results suggest that 80% reported to strongly agree that the DMT improved communication between family and health care provider. Further, 90% of the parent reported that they strongly agreed that the supportive care team was available for questions and concerned as their child progressed through the treatment plan. This is an ongoing study and results will be presented at the conference V. Conclusion. This knowledge can guide professionals in helping parents making informed treatment decisions. Positive outcome for the parents include an increase in family and patient support and it can improve the quality of life for the child. Domains Structure and Processes of Care; Ethical and Legal Aspects of Care
It’s About Time: Interactions between Parents with Advanced Cancer and their Adolescent Children Denice Sheehan, PhD RN, Kent State University, Kent, OH. (Sheehan has disclosed no relevant financial relationships.) Objectives 1. Describe two ways adolescents know their parent is dying. 2. Discuss three ways parents and their adolescents make the most of their time together when the parent is diagnosed with advanced cancer. 3. Identify three implications for clinical practice. I. Background. Most of the published literature about parents with cancer and their children focuses on distress, functional changes within the family, and economic burdens. Few researchers have considered end-of-life as an opportunity for growth and healing. II. Research Objectives. Develop a theoretical framework to explain interaction patterns between parents with advanced cancer and their adolescent children. Identify strategies to prepare adolescents for their lives after the parent’s death. III. Methods. Grounded theory methods using unstructured interviews were used to illuminate
Vol. 39 No. 2 February 2010
Schedule with Abstracts
the processes ill parents and their adolescent children used to manage their lives within the context of the parent’s impending death, and to respond to changes over time. IV. Results. The model depicts the ill parents and adolescents responses to the realization that their time together was limited. Their main concern was not having enough time together. In response, they described a four-stage process for optimizing the time they had left together. Limited time together led to spending more time together and developing means to extending their time together after the parent’s death. For some adolescents, the process culminated in a choice to give up their time with their ill parents when dying became too difficult to watch. V. Conclusion. The findings provide a better understanding of how families respond to the problem of not having enough time together, how adolescents realize their time with their parent will be limited and how some adolescents decide they are ready to give up their time with their parent in order to end the suffering. VI. Implications for Research, Policy, or Practice. The study model could help clinicians introduce discussions of the concept of time to parents with advanced cancer and their adolescent children. The model might guide families in developing strategies for optimizing the time they have left and alert professionals to the many ways that families try to make it better for one another. Domains Psychological Aspects of Care; and Social Aspects of Care
Can You Hear Me Now? The Experience of a Deaf Family Member Surrounding the Death of Loved Ones Karen Kehl, PhD RN ACHPN, University of WisconsineMadison, Madison, WI. Constance Gartner, University of WisconsineMadison, Madison, WI. (All speakers have disclosed no relevant financial relationships.) Objectives 1. Describe the unique nature of communication with the Deaf. 2. Describe at least one challenge faced by a Deaf family member surrounding the death of a loved one. 3. Identify at least one way to improve care for Deaf patients and family members at the end-of-life.
381
I. Background. Little has been published about the experience of Deaf individuals when a loved one dies. Deaf (with a capital D) refers to those who identify socially and culturally with the Deaf community. American Sign Language (ASL) is the primary language of the Deaf in the U.S. and is considered the third most common language in the U.S. Deaf family members face specific challenges when a family member is dying. The question, ‘‘What are the challenges faced by a Deaf family member surrounding the death of a loved one?’’ guided this inquiry. II. Case Description. This is a case study in which one participant, a college-educated older Deaf man, was interviewed about the challenges he faced interacting with the healthcare system as three of his loved ones were dying. The interview was videotaped in American Sign Language, translated into English, transcribed and analyzed using content analysis, and the continuous comparative analysis method. Deaf family members face challenges that affect communication with both the dying person and health care professionals. Patient-family communication issues included physical challenges and financial challenges. Lack of cultural competence concerning the Deaf community created challenges communicating with professionals. Decision-making was also a challenge. III. Conclusion. Healthcare professionals need to be aware of the unique needs of Deaf patients and family members and should consider interventions beyond writing to improve communication. Current technology provides numerous options to better meet the needs of Deaf patients and family members. Domains Structure and Processes of Care; Cultural Aspects of Care
Paper Session (412) Palliative Care Partners with the Hematologic Malignancy (HM) Unit Kathy Selvaggi, MD, West Penn Allegheny Health System, Pittsburgh, PA. Susan Jessell, West Penn Allegheny Health System, Pittsburgh, PA. Sarah Miller, DO, Pittsburgh, PA. Janet Abrahm, MD FAAHPM, Dana-Farber Cancer Institute, Boston, MA. (All speakers have disclosed no relevant financial relationships.)