380 Schedule with Abstracts Vol. 39 No. 2 February 2010

Paper Session (411)

Pediatric Supportive Care Program: ParentsPerspective of Medical Decisions andPalliative Decisions for Children withCancerJoAnne Auger, RN, RCHSD, San Diego, CA.Anke Reineke, PhD, RCHSD, San Diego, CA.Cassie Kline, UCSD, San Diego, CA. JenniferWillert, MD, Rady Children’s UCSD, San Diego,CA. Kim Bower, MD, Institute for Palliative Med-icine at San Diego Hospice, San Diego, CA.Tamara Maginot, Rady Children’s Hospital SanDiego, San Diego, CA. Deborah Schiff, RadyChildren’s Hospital San Diego, San Diego, CA.(All speakers have disclosed no relevant finan-cial relationships.)

Objectives1. Describe factors that can help facilitate pa-

tient-provider communication by using a Deci-sion-Making Tool.

2. Discuss the impact of the Decision-MakingTool and supportive care team on end-of-lifedecisions.

3. Recognize the importance of the Decision-making tool to increase family and patientsupport.

I. Background. Approximately 500,000 childrencope with while another 50,000 children die fromlife-threatening conditions each year in the UnitedStates. Improving palliative and end-of-life care forchildren is a public health priority. Pediatricsupportive care, with an emphasis on enhanced pa-tient-provider communication using the decision-making tool (DMT), symptom management, andquality of life, are important components in thecare of children with life-threatening conditions.II. Research Objectives. This study aims to understandparents’ perspective on three essential areas: (i)impact of care conference in aiding parents inend-of life decisions, (ii) impact of DMT and sup-portive care team on end-of-life decisions, and(iii) symptoms and quality of life of their child.III. Methods. On the hematology/oncology unit ofRady Children’s Hospital San Diego, all parents ofchildren with cancer that had been identified ashigh risk diagnosis received after their care con-ference the DMT. English and Spanish speakingparents were asked to participate in the studywithin four weeks after receiving the DMT. Par-ents decision-making process was measured witha 38-item self administered questionnaire andqualitative questions designed by project staff.

IV. Results. Currently 12 patients ranging from in-fancy to 18-years-old have been enrolled in thestudy. Parents consented to participate in thesurvey, and preliminary results suggest that80% reported to strongly agree that the DMTimproved communication between family andhealth care provider. Further, 90% of the parentreported that they strongly agreed that the sup-portive care team was available for questionsand concerned as their child progressedthrough the treatment plan. This is an ongoingstudy and results will be presented at theconferenceV. Conclusion. This knowledge can guide profes-sionals in helping parents making informedtreatment decisions. Positive outcome for theparents include an increase in family and patientsupport and it can improve the quality of life forthe child.

DomainsStructure and Processes of Care; Ethical andLegal Aspects of Care

It’s About Time: Interactions betweenParents with Advanced Cancer and theirAdolescent ChildrenDenice Sheehan, PhD RN, Kent State University,Kent, OH.(Sheehan has disclosed no relevant financialrelationships.)

Objectives1. Describe two ways adolescents know their

parent is dying.2. Discuss three ways parents and their adoles-

cents make the most of their time togetherwhen the parent is diagnosed with advancedcancer.

3. Identify three implications for clinicalpractice.

I. Background. Most of the published literatureabout parents with cancer and their children fo-cuses on distress, functional changes within thefamily, and economic burdens. Few researchershave considered end-of-life as an opportunityfor growth and healing.II. Research Objectives. Develop a theoreticalframework to explain interaction patterns be-tween parents with advanced cancer and theiradolescent children. Identify strategies to pre-pare adolescents for their lives after the parent’sdeath.III. Methods. Grounded theory methods usingunstructured interviews were used to illuminate

Vol. 39 No. 2 February 2010 Schedule with Abstracts 381

the processes ill parents and their adolescentchildren used to manage their lives within thecontext of the parent’s impending death, andto respond to changes over time.IV. Results. The model depicts the ill parents andadolescents responses to the realization thattheir time together was limited. Their main con-cern was not having enough time together. In re-sponse, they described a four-stage process foroptimizing the time they had left together. Lim-ited time together led to spending more time to-gether and developing means to extending theirtime together after the parent’s death. For someadolescents, the process culminated in a choiceto give up their time with their ill parentswhen dying became too difficult to watch.V. Conclusion. The findings provide a better un-derstanding of how families respond to theproblem of not having enough time together,how adolescents realize their time with their par-ent will be limited and how some adolescents de-cide they are ready to give up their time withtheir parent in order to end the suffering.VI. Implications for Research, Policy, or Practice. Thestudy model could help clinicians introduce dis-cussions of the concept of time to parents withadvanced cancer and their adolescent children.The model might guide families in developingstrategies for optimizing the time they have leftand alert professionals to the many ways thatfamilies try to make it better for one another.

DomainsPsychological Aspects of Care; and Social Aspectsof Care

Can You Hear Me Now? The Experience ofa Deaf Family Member Surrounding theDeath of Loved OnesKaren Kehl, PhD RN ACHPN, University ofWisconsineMadison, Madison, WI. ConstanceGartner, University of WisconsineMadison,Madison, WI.(All speakers have disclosed no relevant finan-cial relationships.)

Objectives1. Describe the unique nature of communica-

tion with the Deaf.2. Describe at least one challenge faced by

a Deaf family member surrounding the deathof a loved one.

3. Identify at least one way to improve care forDeaf patients and family members at theend-of-life.

I. Background. Little has been published aboutthe experience of Deaf individuals when a lovedone dies. Deaf (with a capital D) refers to thosewho identify socially and culturally with theDeaf community. American Sign Language(ASL) is the primary language of the Deaf inthe U.S. and is considered the third most com-mon language in the U.S. Deaf family membersface specific challenges when a family memberis dying. The question, ‘‘What are the chal-lenges faced by a Deaf family member sur-rounding the death of a loved one?’’ guidedthis inquiry.II. Case Description. This is a case study in whichone participant, a college-educated older Deafman, was interviewed about the challenges hefaced interacting with the healthcare system asthree of his loved ones were dying. The interviewwas videotaped in American Sign Language,translated into English, transcribed and ana-lyzed using content analysis, and the continuouscomparative analysis method.Deaf family members face challenges that affectcommunication with both the dying person andhealth care professionals. Patient-family commu-nication issues included physical challenges andfinancial challenges. Lack of cultural compe-tence concerning the Deaf community createdchallenges communicating with professionals.Decision-making was also a challenge.III. Conclusion. Healthcare professionals need tobe aware of the unique needs of Deaf patientsand family members and should consider inter-ventions beyond writing to improve communica-tion. Current technology provides numerousoptions to better meet the needs of Deaf pa-tients and family members.

DomainsStructure and Processes of Care; Cultural Aspectsof Care

Paper Session (412)

Palliative Care Partners with theHematologic Malignancy (HM) UnitKathy Selvaggi, MD, West Penn Allegheny HealthSystem, Pittsburgh, PA. Susan Jessell, West PennAllegheny Health System, Pittsburgh, PA.Sarah Miller, DO, Pittsburgh, PA. JanetAbrahm, MD FAAHPM, Dana-Farber CancerInstitute, Boston, MA.(All speakers have disclosed no relevant finan-cial relationships.)