Delivering National and Regional Parkinsons Disease Caregiver Support: SFVA Nurses Pilot Project Use

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Delivering National and Regional Parkinsons
Disease Caregiver Support SFVA Nurses Pilot
Project Uses Technology To Make A Difference

• Susan L. Heath, RN, MS, Movement Disorders
  Clinical Nurse Specialist and Elaine Lanier, RN,
  MS, Clinical Research Nurse Manager
• PADRECC (Parkinsons Disease, Research, Education
  and Clinical Center) San Francisco Veterans
  Affairs Medical Center

• Outcomes and Challenges
• 750 invitations were mailed, over 350 caregivers
  registered to attend this course, with a 20
  no-show rate. More attendees attempted to
  register than could be hosted indicating a strong
  demand for this type of educational seminar.
  Many caregivers stated their difficulty of
  getting out of the home to attend a conference,
  despite their desire. Some caregivers who could
  not travel to a local transmission site connected
  from home using a VANTS call-in line.
• Nursing alliances were made with each
  participating VA site and new alliances were made
  with non-VA sites for outreach to remote
  under-served regions in Northern California.
  Additional out-of-state sites were invited but
  were unable to participate due to lack of local
  nursing and/or clerical support.
• Despite superb support by VISN 21 IT specialist,
  one key video connection bridge failed and
  intermittently dropped the transmission to three
  sites, requiring manual reconnection, resulting
  in lost opportunity to hear all lecturers. Some
  VA VTEL sites used small TV screens, which was
  not conducive to large viewing audiences.
  However, attendees evaluations were overwhelming
  positive and we have increased our referrals
  since this outreach effort.
• Multiple requests were received for posting the
  videotaped content on our VA Web Site. However,
  Federal guidelines require Closed Captioned
  features (for the hearing impaired) for all
  posted educational videos applying this
  technology is our current challenge. Presently
  only slides from the course are posted on the
  PADRECC Web site.
• What We Learned Future Directions
• Unanimous and national interest in additional
  Caregiver Conferences! We plan to revise the
  course to include interested patients and
  caregivers in November 2008.
• Significant appreciation by caregivers for
  offering conference locally and avoiding costly
  travel.
• VA VTEL technology varied widely from station to
  station we will limit future connections to our
  local Bridge until other VA VTEL bridge sites are
  upgraded.
• Some patients who attended with their caregivers
  were unable to tolerate a six hour educational
  event, due to fatigue. Caregivers requested
  shorter classes and we will limit our next VTEL
  conferences to four hours.
• We are significantly encouraged to continue
  exploration and development of outreach
  connections with VA patients in Californias
  rural Northern Sierra Health Network regions.

Who Participated in the Parkinsons Disease
Caregiver Video Teleconference? San Francisco
30 participants, two rooms Santa Rosa 9
participants Ukiah 4 participants Eureka 4
participants Honolulu, Maui 50
participants Reno 45 participants Fresno 20
participants Palo Alto 20 participants Martinez
16 participants Redding - 20 participants
Sacramento 12 participants Chico 15
participants Outside VISN 21 VA Sites PADRECC
Consortium VA sites Ann Arbor 40 participants
Minneapolis 10 participants Salt Lake City 4
participants Private, Non-VA Sites Santa Rosa
Junior College 12 participants Northern Sierra
Rural Health Network, Trinity County 12
participants Telephone VANTS Call In line 12
from Ohio, Hawaii, New York, Sacramento, Los
Angeles, and Houston

• Goals
• To promote PADRECC tertiary-level outreach to
  caregivers of Parkinsons disease patients in
  VISN 21 and beyond using available technology.
• To establish a network of support and education
  between geographically remote caregivers of
  Parkinsons disease (PD) patients and the San
  Francisco VA PADRECC Nursing staff.
• Objectives
• Conduct the first Parkinson Disease (PD)
  Caregiver Educational Conference to local CBOCs,
  other VAMC, and remote rural sites
  regionally/nationally using video
  teleconferencing technology.
• Offer caregiver support strategies to manage the
  PD patient in the home, maximizing quality of
  life for the Veteran PD patient and the
  Caregiver, and learn how to access established VA
  and community services resources when needed.
• Background
• Patients with Parkinsons disease (PD), the 2nd
  most common neurodegenerative disorder after
  Alzheimer's disease, often have multiple motor
  and non-motor symptoms that challenge both health
  care providers and caregivers. Caregivers face
  unique challenges learning to identify, prevent,
  and proactively treat common problems of
  Parkinsons disease before they become medical or
  social emergencies. At the same time these
  caregivers need support to be able to care for
  their family member while maintaining their own
  health and social issues.
• With the burden of caregiving, it is both
  economically and emotionally costly for
  caregivers to travel to the SFVA. We developed an
  educational outreach pilot project to educate and
  support caregivers of Parkinsons patients beyond
  our SFVA PADRECC. We collaborated with
  tertiary-level movement disorder experts using
  available VA technology to deliver education to
  regional VAs and our out-of-state PADRECC
  Consortium Centers (network).
• The pilot project was called the Parkinsons
  Disease Caregiver Conference, used video
  teleconferencing technology in addition to
  on-site live broadcasting, and occurred on
  November 15, 2007.

• Seminar Conception, Collaboration and
  Coordination
• The initial concept was to offer caregiver
  outreach to remote sites using available
  technology. This Nurse-championed course
  coordinated VAs first Parkinsons National
  Caregiver Tele-conference for 18 VA clinic and
  hospital video sites.
• Program developed with SF PADRECC staff and a
  Honolulu Geriatrician who remotely transmitted
  his lecture.
• SF PADRECC Staff assisted with 350 calls to
  register participants and host the live SFVA
  VTEL transmission.
• SFVA and VISN 21 Information Technology staff
  provided day-long technical support, using four
  VTEL Bridges to transmit to all 18 sites.
• VA programmer provided names of patients with
  ICD-9s of Parkinsons disease in mailing label
  format for brochure.
• SF PADRECC Volunteer Staff assisted in mailing
  out 750 caregiver invitations.
• This Caregiver Course was advertised on the SFVA
  PADRECC Web Site and in non-VA, Bay Area PD
  support group newsletters. The class was linked
  to Google search function for greater visibility.

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Caregiver Video-Teleconference This pilot
project was unique as it unified Parkinsons
caregivers from an entire VISN, currently served
by various programs and providers, and integrated
them with the VA's designated tertiary center
the San Francisco PADRECC. It also connected
three of our out-of-state PD Consortium affiliate
centers. This outreach, education, and
support project integrated existing VA video
conferencing systems (VTEL) that have been
successfully used within the VA around the
country to connect administrators, providers, and
patients.
National Outreach Sites
PADRECC Nurses
Brochure sent to VA Caregivers
Special acknowledgement to Jason Funk IT
Specialist SFVA for his Web site posting, and
technological support and to Larry Kennedy,
VISN 21 IT Specialist who coordinated the 18
VTEL connections for the 2007 conference. And,
special thanks to Lorraine Anzaldo of PADRECC for
producing professional brochures.
Included with Brochure
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Participating Consortium VAs Minneapolis, Ann
Arbor Salt Lake City