Caring to the End of Life

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Caring to the End of Life
How information professionals contributed to
developing an online palliative care resource for
patients, caregivers and health care
professionals.

• michelle m. arbuckle, mlis

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Table of Contents

• Project Goals Overview
• Information Needs Assessment
• Project Development
• Resource Assessment and Collection
• Impact Assessment
• Future Directions

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Caring to the End of Life
An innovative, Web-based educational program to
guide patients, their families and health care
providers through palliative care and end of life
issues to ensure the effective delivery of
patient-centered care.
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Objectives

• Patients/Families
• provide/direct to accurate and up-to-date
  information and resources
• help to navigate the palliative care system
• help to communicate with HCPs
• assist in finding community resources that
  improve their quality of life
• HCPs
• provide accurate and up-to-date information
• provide/direct to clinical tools
• assist in finding resources for pts/families

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Development Plan

• Step 1 Needs Assessment including an
  environmental scan and a literature review
• Step 2 Concept and Design content development,
  storyboard reviews, and semi-structured and
  think aloud interviews with patients

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Development Plan (cont)

• Step 3 Prototype Creation including the
  development of an interface, treatment
  simulations, interviews and usability tests
• Step 4 Program Development including the
  production of all multimedia elements and
  usability testing.

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Step I Needs Assessment

• Literature Review
• Information needs
• Existing resources
• Needs Assessment
• PMH Assessment qualitative interviews
• Canadian Virtual Hospice
• Advisory Committee
• Caregiver and patient representation

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Literature Review

• Assessing information needs - professional
  literature
• Medline
• Elsevier
• ProQuest Nursing
• Review existing resources consumer
• PMH library collection
• PMH social workers
• CHIS
• CAPHIS / CHIPIG

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Needs Assessment

• Canadian Virtual Hospice
• Existing National Needs Assessment
• Resource collaboration
• Professional tools
• Semi-structured Interviews in order to
• obtain expectations of site
• obtain input on proposed subjects
• determine whether proposed content and
  organization met info needs of stakeholders

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Results

• Structural changes - modules
• Start with general intro Living with Cancer
• Increased focus on CAM, nutrition,
  psychosocial/spiritual, planning ahead and
  practical help for caregiver.
• HCP section increased focus on psychosocial/spirit
  ual, preparing for EOL, approaches to assessing
  cultural and religious views, and self-care.

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Step II Concept Development

• Balancing Conflicting Needs
• Need for in-depth content
• Need for easy to find, just in time information
• Facilitate organization of care
• Access to Local Resources and strong community
  links
• Strong emphasis on Psychosocial resources

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Site Structure

• Site Structure
• I Have a Problem With
• I Need to Know More About ...
• Managing and Organizing My Care
• My Care Journal
• Target Audiences
• For Patients
• For Caregivers
• For Health Care Providers

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Evaluation

• More alternative, non-medical resources are
  important to include.
• Stressed the importance of marketing this site to
  family doctors
• Psycho-social issues are critical in the I have a
  problem now section.
• Resources need to be accessed in print-friendly
  format
• Where applicable ensure access to hyperlinks

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Step III Program Development

• Completion of Interface Elements
• Content layout
• Resource lists
• Graphic design
• Production video and narration
• Programming

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Resource Collection

• Friendly, expert faces at top level
• Full bibliographic citations for retrieval
• URLs identified
• Assigned audience relevancy to each resource
• HCP collection gathered from professional
  organizations

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Community Resources

• Graphic community map created
• Resource metadata included
• Name
• Full contact information
• Service web site
• Area served
• Criteria for use
• Fee
• Description of service
• Source information

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Step IV Research Evaluation

• Conduct online survey
• Ongoing
• Track usage of site elements
• Average 2,400 monthly users
• Increasing usage of practical tools
• Promote and implement throughout the community
• Family practices
• Palliative community

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Usage

• Audience not tracked
• Professional tools
• International usage
• 78 American
• 16 European
• lt10 UK, Germany, Australia,Japan
• Increasing referrals
• CHN
• Wikipedia
• Womens Health Matters

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Future Frontiers

• Expand collection and the scope of community
  services Gmap application
• Explore methods of resource catalogue integration
  - updates
• Addition of reviews / abstracts for resources
• Provide interface for community partners to
  update or submit listings
• Expand lending collection of end-of-life
  resources

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Thank you