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