Caring to the End of Life

1. 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

2. Table of Contents • Project Goals & Overview • Information Needs Assessment • Project Development • Resource Assessment and Collection • Impact Assessment • Future Directions Project Overview

3. 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. Project Overview

4. 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 HCP’s • assist in finding community resources that improve their quality of life HCP’s: • provide accurate and up-to-date information • provide/direct to clinical tools • assist in finding resources for pts/families Project Overview

5. 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; Project Overview

6. Development Plan (con’t) 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. Project Overview

7. 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 Needs Assessment

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

9. 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 Needs Assessment

10. 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/spiritual, preparing for EOL, approaches to assessing cultural and religious views, and self-care. Needs Assessment

11. 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 Step II: Concept Development

12. 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 Step II: Concept Development

13. 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 Step II: Concept Development

14. Step III: Program Development • Completion of Interface Elements • Content layout • Resource lists • Graphic design • Production video and narration • Programming Step III: Program Development

15. 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 Step III: Program Development

16. 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 Step III: Program Development

17. Project Overview

18. Project Overview

19. Project Overview

20. Project Overview

21. Project Overview

22. Project Overview

23. 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 Step IV: Research & Evaluation

24. Usage • Audience not tracked • Professional tools • International usage • 78% American • 16% European • <10% UK, Germany, Australia,Japan • Increasing referrals • CHN • Wikipedia • Women’s Health Matters Step IV: Research & Evaluation

25. 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 Conclusions

26. Thank you