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A Vision of Hope: Using Patient Voices to Train Interdisciplinary
Clinicians
Jackie Williams-Reade, PhD, LMFTAssistant Professor, Director of Medical Family Therapy
Loma Linda University
Collaborative Family Healthcare Association 14th Annual ConferenceOctober 4-6, 2012 Austin, Texas U.S.A.
Session #B5bOctober 6, 2012
Faculty Disclosure
I/We have not had any relevant financial relationships during the past 12 months.
The Vision of Hope Project is supported by a grant (1 RC1NR011710-01) from the NIH National Institute
of Nursing Research.
AcknowledgementsPrimary Investigators: Gail Geller, ScD, MHS and Cynda H. Rushton, PhD, RN
Co-Investigators: Mary Catherine Beach, MD, MPH and Carlton Haywood, Jr., PhD, MA
Objectives• Explore the lived experiences of adolescents with
Duchenne Muscular Dystrophy and their family members
• Describe the impact of caring for these patients on family members and interdisciplinary team members
• Review a research project that used patient voices in the training of interdisciplinary clinicians in pediatric palliative care
Goals for Today
• Background– Description of our research project
– Description of Duchenne Muscular Dystrophy (DMD) and Pediatric Palliative Care (PPC)
• Show 2 of our videos
• Engage in brief reflection/discussion
• Review evaluation data
Specific Aims of Grant
• To understand the lived experiences and unmet needs of adolescents and young adults with DMD and the impact of caring for this population on interdisciplinary teams of clinicians; and
• Enhance the integration of palliative care principles and practices through the training of interdisciplinary professionals, patients and families.
To accomplish these aims, we:
• Produced six documentary training videos that highlight the lived experience of patients, families, and the clinicians
who care for them and various aspects of palliative care.
• Adapted an existing training program (IPPC) for this population that draws on the videos to trigger conversation
and highlight relevant palliative care principles.
• Implemented and evaluated two different training programs designed to improve clinician attitudes and
patient experiences
• CLINICIAN OUTCOMES• Knowledge• Attitudes• Reported Skills/Behavior• Personal
Distress/Meaning
• PATIENT EXPERIENCE
• Pre-Intervention:• Hierarchical (Non-Relational)
Model of Treatment-Focused Care
• Post-Intervention:• Relational Model of
Palliative Care
• INTERVENTIONS• A: Video +
discussion • B: Modified IPPC
Curriculum w/ Video
Duchenne Muscular Dystrophy (DMD) • Definition/Incidence - One of nine types of muscular dystrophy. Most common pediatric
genetic disorder in the world, affecting 1 in every 3500 male births. Affects all races and ethnicities equally.
• Cause - An absence of dystrophin, a protein that helps keep muscle cells intact.
• Inheritance - X-linked recessive. DMD primarily affects boys, who inherit the disease through their mothers. Women can be carriers of DMD but usually exhibit no symptoms.
• Onset - Early childhood - about 2 to 6 years.
• Symptoms - Generalized weakness and muscle wasting first affecting the muscles of the hips, pelvic area, thighs and shoulders. Some boys have cognitive impairment.
• Progression - Progressive loss of neuromuscular function. DMD eventually affects all voluntary muscles, and the heart and breathing muscles.
• Death is inevitable due to respiratory or cardiac failure but time spans vary
• Use of mechanical ventilation can extend lifespan
• Survival is rare beyond the early 30s
MDA, 2008
Curative treatment
Palliativetreatment
D E A T H
Bereavement
Historical Model of Palliative Care
Diagnosis
Curative treatment
Palliativetreatment
D E A T H
Bereavement
Current Model of Palliative Care
Diagnosis
Palliative Care (PC)
“The art and science of patient and family-centered care aimed at attending to suffering, promoting healing and improving quality of life” ~Javier Kane, MD
“It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and
improving quality of life at any stage of disease.” (Klick & Hauer, 2010)
World Health Organization definition ofPediatric Palliative Care
• Palliative care begins when illness is diagnosed, and continues irrespective of whether or not a child
receives disease directed treatment • Palliative care for children is the active total care of
the child’s body, mind and spirit, and also involves giving support to the family
• Requires a broad multidisciplinary approach that includes the family and makes use of available
community resources
Components of Palliative Care
• Quality of life• Pain and Symptom Management• Communication• Ethical Decision making• Advance Care Planning• Grief & Bereavement
How Can Palliative Care Help?
• Relief of suffering and improved quality of life – addresses not only physical pain but emotional and spiritual distress as well.
• Acknowledges clinician suffering and its contribution to negative attitudes.
• Improved communication around goals of care – including advanced care planning and involvement of adolescents in decision-making.
• Enhanced coordination of care among patients, families and clinicians, and across systems of care.
About the Curriculum• A modification of the 25-hour instructional curriculum developed
by the Initiative for Pediatric Palliative Care (IPPC) to enhance the skills of pediatric healthcare professionals.
• Intended for interdisciplinary teams of clinicians, patients and family members to learn as equal co-participants
• Differs from other educational experiences:
• Fosters self-discovery in a safe environment away from distractions
• Allows more time for reflection and interaction• Involves patients and families• Offers participants opportunities for self-care
Comparison of Training FormatsContent In-Service Intensive Retreat
Length 1-1.5 hours 2.5 days
Intro 10 minutes 15-20 minutes
Brief presentations• Intro to Pediatric Palliative care• Ethical Landscape
30 minutes
Films 1-5 1 film = 9 minutes 1 film = 9 minutes
Film Discussion 15 minutes 15-45 min. per film
Experiential Exercise(s)• Listening• Quality of Life
30 minutes each
Closing Activity 30 minutes
Evaluation (pre and post) 5-10 min. 15-20 minutes
ParticipantsInstitution City
Modified IPPC/ 2.5 day retreatMUSC Charleston, SCColumbus Nationwide Children’s Hospital Columbus, OH
Children’s Hospital of Michigan Detroit, MIChildren’s Hospital of Pittsburgh of UPMC Pittsburgh, PA
Video +discussion/ 60-90 minDuke/Duke Children’s Hospital Durham, NCCincinnati Children’s Cincinnati, OHUniversity of Rochester Medical Center Rochester, NY
Retreat In-service Total
Pre Post Pre Post Pre Post
I have confidence that I can address the barriers to integrating palliative care services with pediatric NMD care.
Disagree 12.0 7.7 26.2 12.9 22.1 11.4
Agree 88.0 92.3 73.8 87.1* 77.9 88.6Referring a child or adolescent to palliative care services too early will undermine the family’s hope
Disagree 76.9 92.0 78.1 90.3 77.8 90.8Agree 23.1 8.0 * 21.9 9.7 * 22.2 9.2
Palliative care is primarily about providing care at the end of lifeDisagree 80.8 100.0 88.9 98.4 86.5 98.9
Agree 19.2 0.0 * 11.1 1.6 * 13.5 1.1
Results
Conclusions• Clinician attitudes toward the incorporation of
palliative care into the care of patients with DMD and their family members can be positively influenced through a film-based intervention – both short and long versions.
• Further research should explore – Future research should examine the extent to which
the attitudinal changes observed here can be sustained and are linked to clinical outcomes.