Project 10 System Navigation Tool Wendy Duggleby, DSN, RN,AOCN Kelly Penz, MN, RN Hamilton Ontario May 9, 2007

Team Members  Donna Goodridge  Christopher Justice  Bev Leipert  Denise Marshall  Kathleen Willison  Alan Taniguchi  Donna Wilson  Kelly Penz (PhD Nursing Student – trainee)

Collaborators  Pat Berry ( International Collaborator)  Kathy Nakrayko ( Saskatoon Health Region)  Edna Parrott ( Sunrise Health Region)  Sylvia Keall ( Five Hills Health Region)  Joanne Hebblethwaite ( Prince Albert Parkland Health Region)

Purpose  To develop and pilot test a System Navigation Tool (SNT) suitable for older terminally –ill patients and their family members in rural communities that facilitates timely access and seamless transitions.

Definitions  Transitions: Ongoing processes characterized by change for the individual (Olsson & Ek, 2002).  Rural: Interdisciplinary definition of rural that focuses on environmentally disadvantages regions. (ICE team) Saskatchewan postal code 0 Saskatchewan postal code 0  Older (65 years of age and older)

Three Phases  Phase 1 ( ) Grounded theory study exploring transitions Grounded theory study exploring transitions  Phase 2 ( ) Development of SNT based on data from phase 1 Development of SNT based on data from phase 1  Phase 3 ( ) Pilot study SNT Pilot study SNT

Work to Date  Hiring of Trainee- Kelly Penz  Teleconference Team Meeting Nov. 21, 2006 re Phase 1  Literature/tables of Integrated care pathways  Meeting with site collaborators March, 6, 2007  Ethics Submission and approval U of S  Ethics approval Health Regions  Team meeting May 7, 2007

Phase 1  Purpose: Describe access and transition pathways and their associated processes for rural older palliative patients and their families from the perceptions of rural palliative care providers and bereaved family members using Glaser’s (2001, 2005) grounded theory approach.

Phase 1  Specific aim #1: Describe significant transitions that occur for rural older persons who require palliative care and their families.  Specific aim #2: Describe what helps or hinders the transitions  Specific aim #3 : Develop a substantive theory of transitions and ways older palliative patients and their families deal with transitions.

Sample  2 groups: Palliative care providers ( Palliative coordinators, nurses and aides) Palliative care providers ( Palliative coordinators, nurses and aides) Bereaved family members Bereaved family members  3 health regions in Sask: Prince Albert Parkland Health Region, Five Hills Health Region and Sunrise Health Region

Palliative Care Providers  2 focus groups comprised of 4-6 palliative care providers.  Each focus group will have 2 interviews  Inclusion criteria: 1) 18 years of age and older, 2) English speaking, 3) Providing direct care of palliative older patients and their families in rural settings and 4) May be palliative care coordinators, palliative care nurses or home care aides.

PCP Recruitment  Procedure Director of Home Care/Continuing Care gives letter of interest to palliative care coordinators Director of Home Care/Continuing Care gives letter of interest to palliative care coordinators Palliative care coordinators mail letter consenting to contact Palliative care coordinators mail letter consenting to contact Research Assistant calls explains study and mails out consent forms etc. Arranges for Focus group teleconference Research Assistant calls explains study and mails out consent forms etc. Arranges for Focus group teleconference Participants return demographic form and signed consent. Participants return demographic form and signed consent.

PCP- Nurses and Aides  Palliative Care Coordinators contact potential participants based on selection criteria and see if they are willing to talk with a research assistant.  If yes RA will contact explain the study, set up Focus group interview time and mail package of consent forms etc.  Consent form returned to RA.  Focus Group Telephone Interview

Examples of Focus Group Questions  What are the biggest changes or transitions that palliative care patients go through?  When do these occur?  What do you think influences transitions?  What are the best outcomes of the transitions?  Examples of when changes or transitions went well or did not go well.

Bereaved Family Caregivers   2 interviews  Inclusion criteria: 1) Age 18 years of age and older, 2) English-speaking, 3) experienced death of an older ( 65 and >) who received palliative care 2-12 months previous, 4) lives in a rural area (0 postal code), 5) direct contact with decedent at least one per week in the last month of the decedents life, and 6) telephone access

Recruitment Bereaved Family Members  Initial contact by palliative care coordinators to see if they are willing to talk with researchers  If agree RA will contact them and explain the study and set up time to interview  RA will mail out consent forms etc.  Participant will mail back demographic form and consent form

Examples of Interview Questions  What are the biggest changes that happened with your family member when they were terminally ill ?  What were the biggest changes for you?  How did you deal with these changes  What do you think had an influence?  Was there anything you think could have helped?

Data Collection Phase 1 Palliative Care Providers 2 focus groups Bereaved Family Members Focus group interview #1 Interview #1 Focus Group Interview #2 Interview #2

Data Analysis  Glaser’s (2001, 2005) approach  Transcripts verbatim, checked for accuracy  Nudist 6  Line by line constant comparative approach  Open, selective and theoretical coding  Memoing and inclusion of literature

Scientific Rigor  Creditability, auditability, fittingness and confirmability  Participants language used as much as possible  Confirming with participants as much as possible  Raw data: audit trail of decisions  Grounding theoretical observations in the data

Specific Aim #1 and #2 Example IADL/ADL No assistance Full Exercises Adapt environment Pharmacy and grocery delivery Taxi certificates Housekeeping assistance Personal care aides Meal delivery

Nursing Therapeutics Transition Conditions: Facilitators & Inhibitors Personal Meanings Cultural beliefs & attitudes Socioeconomic status Preparation & knowledge CommunitySociety Patterns of ResponseNature of Transitions Process Indicators Feeling Connected Interacting Location and Being Situated Developing Confidence and Coping Outcome Indicators Mastery Fluid Integrative Identities Types Developmental Situational Health/Illness Organizational Patterns Single Multiple Sequential Simultaneous Related Unrelated Properties Awareness Engagement Change and Difference Transition Time Span Critical Points and Events Meleis et al 2000

Time Lines: Phase 1 ActivityDatesResponsibility Orientation RA May 15 PI Orientation Site Collaborators May 21 PI/RA Begin Data Collection May 28 RA Data Analysis With Data Collection PI/RA

Tentative Time Lines  Develop Plans for KT: May 2008  Preliminary Results May 2008  Complete Data Analysis: August 2008  Literature Review ongoing  Meetings to develop SNT : Sept – Dec. 2008

Tentative Time Lines  Jan 2009 – Develop mixed methods pilot procedures  March 2009 Ethics submission for pilot  June, 2009 begin pilot study.  Jan Finish data collection pilot study  May 2010 Preliminary pilot data  Sept 2010 Develop grant proposal

Challenges  Communication  Involvement of the team  Involvement of Site Collaborators  Involvement of Community Partners  Funding  Timelines  Feasible/ cost effective SNT

System Navigation Tool