Project 10 System Project 10 System Navigation Tool Navigation Tool Wendy Duggleby, DSN, RN,AOCN Wendy Duggleby, DSN, RN,AOCN Kelly Penz, MN, RN Kelly Penz, MN, RN Hamilton Ontario Hamilton Ontario May 9, 2007 May 9, 2007
Project 10 System Project 10 System Navigation Tool Navigation Tool
Wendy Duggleby, DSN, RN,AOCNWendy Duggleby, DSN, RN,AOCN
Kelly Penz, MN, RNKelly Penz, MN, RN
Hamilton OntarioHamilton Ontario
May 9, 2007May 9, 2007
Team MembersTeam Members
Donna GoodridgeDonna Goodridge Christopher JusticeChristopher Justice Bev LeipertBev Leipert Denise MarshallDenise Marshall Kathleen WillisonKathleen Willison Alan TaniguchiAlan Taniguchi Donna WilsonDonna Wilson Kelly Penz (PhD Nursing Student – trainee)Kelly Penz (PhD Nursing Student – trainee)
CollaboratorsCollaborators
Pat Berry ( International Collaborator)Pat Berry ( International Collaborator) Kathy Nakrayko ( Saskatoon Health Kathy Nakrayko ( Saskatoon Health
Region)Region) Edna Parrott ( Sunrise Health Region)Edna Parrott ( Sunrise Health Region) Sylvia Keall ( Five Hills Health Region) Sylvia Keall ( Five Hills Health Region) Joanne Hebblethwaite ( Prince Albert Joanne Hebblethwaite ( Prince Albert
Parkland Health Region) Parkland Health Region)
PurposePurpose
To develop and pilot test a System To develop and pilot test a System Navigation Tool (SNT) suitable for older Navigation Tool (SNT) suitable for older terminally –ill patients and their family terminally –ill patients and their family members in rural communities that members in rural communities that facilitates timely access and seamless facilitates timely access and seamless transitions. transitions.
DefinitionsDefinitions
Transitions: Ongoing processes Transitions: Ongoing processes characterized by change for the individual characterized by change for the individual (Olsson & Ek, 2002). (Olsson & Ek, 2002).
Rural: Interdisciplinary definition of rural Rural: Interdisciplinary definition of rural that focuses on environmentally that focuses on environmentally disadvantages regions. (ICE team) disadvantages regions. (ICE team) Saskatchewan postal code 0Saskatchewan postal code 0
Older (65 years of age and older) Older (65 years of age and older)
Three PhasesThree Phases
Phase 1 (2007-2008)Phase 1 (2007-2008) Grounded theory study exploring transitionsGrounded theory study exploring transitions
Phase 2 (2008-2009)Phase 2 (2008-2009) Development of SNT based on data from Development of SNT based on data from
phase 1phase 1 Phase 3 (2009-2010)Phase 3 (2009-2010)
Pilot study SNT Pilot study SNT
Work to DateWork to Date
Hiring of Trainee- Kelly PenzHiring of Trainee- Kelly Penz Teleconference Team Meeting Nov. 21, 2006 re Teleconference Team Meeting Nov. 21, 2006 re
Phase 1Phase 1 Literature/tables of Integrated care pathwaysLiterature/tables of Integrated care pathways Meeting with site collaborators March, 6, 2007Meeting with site collaborators March, 6, 2007 Ethics Submission and approval U of SEthics Submission and approval U of S Ethics approval Health RegionsEthics approval Health Regions Team meeting May 7, 2007Team meeting May 7, 2007
Phase 1Phase 1
Purpose: Describe access and transition Purpose: Describe access and transition pathways and their associated processes pathways and their associated processes for rural older palliative patients and their for rural older palliative patients and their families from the perceptions of rural families from the perceptions of rural palliative care providers and bereaved palliative care providers and bereaved family members using Glaser’s (2001, family members using Glaser’s (2001, 2005) grounded theory approach. 2005) grounded theory approach.
Phase 1Phase 1
Specific aim #1: Describe significant transitions Specific aim #1: Describe significant transitions that occur for rural older persons who require that occur for rural older persons who require palliative care and their families. palliative care and their families.
Specific aim #2: Describe what helps or hinders Specific aim #2: Describe what helps or hinders the transitionsthe transitions
Specific aim #3 : Develop a substantive theory of Specific aim #3 : Develop a substantive theory of transitions and ways older palliative patients and transitions and ways older palliative patients and their families deal with transitions. their families deal with transitions.
SampleSample
2 groups: 2 groups: Palliative care providers ( Palliative Palliative care providers ( Palliative
coordinators, nurses and aides) coordinators, nurses and aides) Bereaved family membersBereaved family members
3 health regions in Sask: Prince Albert 3 health regions in Sask: Prince Albert Parkland Health Region, Five Hills Health Parkland Health Region, Five Hills Health Region and Sunrise Health RegionRegion and Sunrise Health Region
Palliative Care ProvidersPalliative Care Providers
2 focus groups comprised of 4-6 palliative 2 focus groups comprised of 4-6 palliative care providers. care providers.
Each focus group will have 2 interviewsEach focus group will have 2 interviews Inclusion criteria: 1) 18 years of age and Inclusion criteria: 1) 18 years of age and
older, 2) English speaking, 3) Providing older, 2) English speaking, 3) Providing direct care of palliative older patients and direct care of palliative older patients and their families in rural settings and 4) May their families in rural settings and 4) May be palliative care coordinators, palliative be palliative care coordinators, palliative care nurses or home care aides. care nurses or home care aides.
PCP RecruitmentPCP Recruitment
ProcedureProcedure Director of Home Care/Continuing Care gives Director of Home Care/Continuing Care gives
letter of interest to palliative care coordinatorsletter of interest to palliative care coordinators Palliative care coordinators mail letter Palliative care coordinators mail letter
consenting to contactconsenting to contact Research Assistant calls explains study and Research Assistant calls explains study and
mails out consent forms etc. Arranges for mails out consent forms etc. Arranges for Focus group teleconferenceFocus group teleconference
Participants return demographic form and Participants return demographic form and signed consent. signed consent.
PCP- Nurses and AidesPCP- Nurses and Aides
Palliative Care Coordinators contact Palliative Care Coordinators contact potential participants based on selection potential participants based on selection criteria and see if they are willing to talk criteria and see if they are willing to talk with a research assistant. with a research assistant.
If yes RA will contact explain the study, set If yes RA will contact explain the study, set up Focus group interview time and mail up Focus group interview time and mail package of consent forms etc. package of consent forms etc.
Consent form returned to RA.Consent form returned to RA. Focus Group Telephone Interview Focus Group Telephone Interview
Examples of Focus Group Examples of Focus Group QuestionsQuestions
What are the biggest changes or What are the biggest changes or transitions that palliative care patients go transitions that palliative care patients go through? through?
When do these occur? When do these occur? What do you think influences transitions? What do you think influences transitions? What are the best outcomes of the What are the best outcomes of the
transitions? transitions? Examples of when changes or transitions Examples of when changes or transitions
went well or did not go well.went well or did not go well.
Bereaved Family CaregiversBereaved Family Caregivers
10-15 10-15 2 interviews 2 interviews Inclusion criteria: 1) Age 18 years of age and Inclusion criteria: 1) Age 18 years of age and
older, 2) English-speaking, 3) experienced death older, 2) English-speaking, 3) experienced death of an older ( 65 and >) who received palliative of an older ( 65 and >) who received palliative care 2-12 months previous, 4) lives in a rural care 2-12 months previous, 4) lives in a rural area (0 postal code), 5) direct contact with area (0 postal code), 5) direct contact with decedent at least one per week in the last month decedent at least one per week in the last month of the decedents life, and 6) telephone accessof the decedents life, and 6) telephone access
Recruitment Bereaved Family Recruitment Bereaved Family MembersMembers
Initial contact by palliative care Initial contact by palliative care coordinators to see if they are willing to coordinators to see if they are willing to talk with researcherstalk with researchers
If agree RA will contact them and explain If agree RA will contact them and explain the study and set up time to interviewthe study and set up time to interview
RA will mail out consent forms etc. RA will mail out consent forms etc. Participant will mail back demographic Participant will mail back demographic
form and consent formform and consent form
Examples of Interview QuestionsExamples of Interview Questions
What are the biggest changes that What are the biggest changes that happened with your family member when happened with your family member when they were terminally ill ?they were terminally ill ?
What were the biggest changes for you? What were the biggest changes for you? How did you deal with these changesHow did you deal with these changes What do you think had an influence?What do you think had an influence? Was there anything you think could have Was there anything you think could have
helped? helped?
Data Collection Phase 1Data Collection Phase 1
Palliative Care Providers
2 focus groups
Bereaved Family Members
10-15
Focus group interview #1 Interview #1
Focus Group Interview #2
Interview #2
Data AnalysisData Analysis
Glaser’s (2001, 2005) approachGlaser’s (2001, 2005) approach Transcripts verbatim, checked for Transcripts verbatim, checked for
accuracyaccuracy Nudist 6Nudist 6 Line by line constant comparative Line by line constant comparative
approachapproach Open, selective and theoretical codingOpen, selective and theoretical coding Memoing and inclusion of literatureMemoing and inclusion of literature
Scientific RigorScientific Rigor
Creditability, auditability, fittingness and Creditability, auditability, fittingness and confirmabilityconfirmability
Participants language used as much as Participants language used as much as possible possible
Confirming with participants as much as Confirming with participants as much as possiblepossible
Raw data: audit trail of decisionsRaw data: audit trail of decisions Grounding theoretical observations in the Grounding theoretical observations in the
datadata
Specific Aim #1 and #2Specific Aim #1 and #2Example IADL/ADLExample 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
Community Society
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
DevelopmentalSituationalHealth/IllnessOrganizational
Patterns
SingleMultipleSequentialSimultaneousRelatedUnrelated
Properties
AwarenessEngagementChange and DifferenceTransition Time SpanCritical Points and Events
Meleis et al 2000
Time Lines: Phase 1Time Lines: Phase 1
ActivityActivity Dates Dates ResponsibilityResponsibility
Orientation RAOrientation RA May 15May 15 PIPI
Orientation Site Orientation Site CollaboratorsCollaborators
May 21May 21 PI/RAPI/RA
Begin Data Begin Data CollectionCollection
May 28May 28 RARA
Data AnalysisData Analysis With Data With Data Collection Collection
PI/RAPI/RA
Tentative Time LinesTentative Time Lines
Develop Plans for KT: May 2008Develop Plans for KT: May 2008 Preliminary Results May 2008Preliminary Results May 2008 Complete Data Analysis: August 2008Complete Data Analysis: August 2008 Literature Review ongoingLiterature Review ongoing Meetings to develop SNT : Sept – Dec. Meetings to develop SNT : Sept – Dec.
20082008
Tentative Time LinesTentative Time Lines
Jan 2009 – Develop mixed methods pilot Jan 2009 – Develop mixed methods pilot procedures procedures
March 2009 Ethics submission for pilotMarch 2009 Ethics submission for pilot June, 2009 begin pilot study.June, 2009 begin pilot study. Jan. 2010 Finish data collection pilot Jan. 2010 Finish data collection pilot
study study May 2010 Preliminary pilot dataMay 2010 Preliminary pilot data Sept 2010 Develop grant proposal Sept 2010 Develop grant proposal
ChallengesChallenges
Communication Communication Involvement of the teamInvolvement of the team Involvement of Site CollaboratorsInvolvement of Site Collaborators Involvement of Community PartnersInvolvement of Community Partners FundingFunding TimelinesTimelines Feasible/ cost effective SNTFeasible/ cost effective SNT
System Navigation ToolSystem Navigation Tool