Timing it Right to Support Families as they Transition

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Department of Occupational Science and Occupational Therapy C r e a t i n g L e a d e r s i n O T

“Timing it Right” to Support Families as they

Transition

Jill Cameron, PhD

Canadian Institutes of Health Research New Investigator Assistant Professor

Adjunct Scientist, Toronto Rehabilitation Institute

CESN Symposium, April 4, 2012

Department of Occupational Science and Occupational Therapy

Outline

Why focus on transitions?

Overview of CSS Transitions guidelines

6.1 Supporting Patients, Families and Caregivers

How can we use these guidelines?

Example from current research:

Timing it Right Stroke Family Support Program

Why focus on transitions?

Acute care, rehab, and community care

Distinct units

Traditionally, few coordinating efforts

Patient and family must manage often challenging transitions

“unfamiliar territory”

“door closed behind us”

Limited supports from system in community

(Kerr, SM, 2001; Cameron, JI et al 2007)

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Why focus on transitions?

Families report not receiving adequate training to support transition home (Smith, JE, et al 2000; Kerr, SM, 2001)

ADL

Medication

Managing emotions

Accessing services

Financial aid

Overview of CSS Transitions Guidelines

CSS Best Practice Guidelines 2010 added section on Transitions!

http://www.strokebestpractices.ca/

Section 6.0:

Section 6.0: MANAGING MANAGING STROKE CARE STROKE CARE TRANSITIONS TRANSITIONS

This section for 2010 was created to help patients, families, and caregivers understand and move through the transitions along the continuum of stroke care. The recommendations in this section relate to particular aspects of transition management for healthcare professionals,

patients, families, and caregivers.

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The Canadian The Canadian Stroke Strategy Stroke Strategy

Model for Model for Transitions of Transitions of Care Following a Care Following a

Stroke Stroke

6.0 Managing Stroke Care Transitions

1. Supporting Patients, Families and Caregivers Through Transitions 2. Patient and Family Education

3. Interprofessional Communication 4. Discharge Planning

5. Early Supported Discharge

6. Community Reintegration Following Stroke

Recommendation 6.1 Recommendation 6.1

Supporting Patients, Families and Supporting Patients, Families and Caregivers Through Transitions Caregivers Through Transitions

New for 2010 New for 2010

Patients, families, and caregivers should be prepared for their transitions between care environments by being provided with information, education, training, emotional support, and community services specific to

the transition they are undergoing

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Recommendation 6.1

Recommendation 6.1: : Supporting Patients, Supporting Patients, Families and Caregivers Through Transitions Families and Caregivers Through Transitions New for 2010

New for 2010

Support should include:

i. written discharge instructions from care providers that identify action plans, follow-up care, and goals, provided to the patient, family, and primary care giver

ii. access to a contact person in the hospital or community (designated case manager or system navigator) for post- discharge queries

iii.access to and advice from health and social service organizations

iv.referrals to community agencies such as stroke survivor groups, peer survivor visiting programs, and other services and agencies

How can we apply these guidelines?

Timing it Right

Stroke Family Support Program

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What are family support programs missing?

Care Continuum / “Timing” Perspective

Things are changing:

Place where care is provided/received

Treatment focus

Availability of trained health care professionals

Stroke survivor’s functional ability

Corresponding change in family role and, therefore, needs for support

“Timing It Right” Framework

Comprehensive five-phased approach to support families from the hospital to the home

Emphasizes the timing of support needs across the care continuum

Premise: addressing phase-specific needs will enhance family preparedness, ease transitions across care environments, and minimize negative outcomes (e.g., burden)

Cameron & Gignac. Patient Educ Couns, 2008:70:305-314

TIR Phases

1. Event/diagnosis 2. Stabilization 3. Preparation 4. Implementation 5. Adaptation

Acute Care

Home Acute/Rehab

Stroke families’ have different support needs across these phases

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Social Support Context

(Cohen, 1992)

Social Support Informational

Tangible &

Training Emotional

Appraisal

How do you use the TIR framework to improve the timing of support provision across care environments?

Intervention Development

TIR framework provided outline

One “chapter” for each TIR phase

Consider informational, emotional, tangible and training needs

Qualitative study (Cameron et al, manuscript)

24 family caregivers, urban and rural

14 health care professionals, across care continuum

Leveraged existing educational resources

Developed new material as needed

Interdisciplinary review committee

Reviewed and revised for local context

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Summary of stroke families key needs for each phase and who

can meet these needs

(Cameron et al manuscript submitted)

Event Phase

information: diagnostic testing, treatment, medications

emotional: sense of being cared for

instrumental: comforts (e.g., blanket), completion of forms, companionship, parking, accommodations, help at home

training: none

HCP: information & instrumental support

F/F: emotional & instrumental support

Stabilization

information: what is a stroke, medical status, expected recovery, rehabilitation eligibility and options, care processes, roles of HCPs

emotional: sense of being cared for

instrumental: comforts, completion of forms, companionship, parking, accommodations, help at home, transfers between hospitals, arranging rehabilitation

training: support ADL in hospital

HCP: information & instrumental support

F/F: emotional & instrumental support

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Preparation ~ what

 information: care plan, rehabilitation goals and intensity, home care services, secondary prevention, navigating the health care system

 emotional: more relaxed and optimistic

 instrumental: participate in rehabilitation sessions, discharge planning, disability insurance application, community care service planning, accessing ongoing rehabilitation, ensuring home safety, coordination of follow-up appointments, someone asking how caregiver is doing

 training: mobility, transfers, medical care at home, rehabilitation exercises, how to provide care in the home, how to manage behavior changes and depression, weekend visits (passes)

Preparation ~ who

HCPs: information, instrumental, training

F/F: instrumental (home preparation)

Peers: information (practical guidance for caring in the home)

Implementation ~ what

 information: secondary prevention, where to go with questions, how to care and support rehabilitation at home, realistic expectations regarding outpatient therapy and recovery, community reintegration, community-based programs/services to support caregiver,

 emotional: sense of being cared for, sharing experience with peers

 instrumental: case manager, home safety, more home care services based on needs of survivor and caregiver, respite care, day programs, assistance at home, follow-up call from in-patient HCP to check on survivor and caregiver, person to contact with questions, visits from family and friends, organize long-term care papers

 training: managing rehabilitation at home, communication (aphasia), stroke survivor mental health, support community reintegration, managing the unexpected (e.g., problem solving skills)

 appraisal: need for feedback on their care-giving skills

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Implementation ~ who

Peers: information (practical guidance), emotional

HCP: instrumental, information, appraisal

F/F: instrumental (help around the home, food, assist with care provision)

Adaptation ~ what

information: communication, stroke affects the whole family, life after stroke, community re-integration, preventing or coping with future health events, long- term care options, caregiver respite opportunities

emotional: emotional comfort, sense caregiver is being cared for

instrumental: re-assessment for community and rehabilitation services, need for supports received during implementation to continue, respite, peer support groups

training: communication, prevention of future events, learning to live with the chronicity of stroke

Adaptation ~ who

HCP: support not evident

F/F: support decreases over time

Peers: emotional support

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How do you deliver support across care environments?

Qualitative study

 “one person to coordinate support from health care system”

 “follow-up after we have left the hospital”

What have others done?

 Telephone support (e.g., Grant, 1999, 2002)

 Trained nurses (e.g., van den Heuvel, 2002)

 Family Support Organizers (e.g., Lincoln, 2003)

 Models of Integrated Service Delivery

Case management (PRISMA ~ Hebert, 2003)

Stroke Support Person – one key individual, in person during acute care, by telephone thereafter.

Stroke Support Person

Health care professional:

Occupational Therapist

Nurse

Social Worker

Other

Expertise in stroke management and care delivery options.

Key Roles of SSP

1. Provide Emotional Support

• Ask “how are you doing?” in each session 2. Provide Informational Support (Guide) 3. Provide Tangible Assistance and Guidance

• Self-management skills

• Navigation to appropriate resources 4. Feedback on how they are managing

• “it sounds like you are managing well”

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The result:

Giving stroke families the support they need when they need it!

Objectives of Pilot RCT

Test RCT protocol

Determine time required for intervention delivery

Collect pilot quantitative and qualitative data

Pilot RCT – Sites

Calgary

Pembroke Toronto

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Pilot Protocol

 Recruit 30 family caregivers

 Inclusion Criteria:

 Stroke Survivors:

 First stroke hospitalization

 Ischemic or hemorrhagic stroke

 At least one rehab referral during acute care

 Caregiver:

 Able to speak and read English

 Primarily responsible for providing and/or coordinating care in the community, not paid position

 Exclusion Criteria:

 Terminally ill stroke patients

 Survivors discharged to complex continuing care, long-term care or assisted retirement residences.

Intervention Arms:

1. Standard Care 2. Self-directed TIRSFSP

 Orientation by Stroke Support Person (SSP) 3. SSP-delivered TIRSFSP

 In hospital for first session

 Monthly by telephone for first 6 months post- stroke

 Tailored to individual caregiver needs

Assessments

Baseline, 1, 3, and 6 months post stroke

 Valid and reliable measurement instruments

Demographics

Caregiver Assistance Scale

MOS Social Support Survey

Centre for Epidemiological Studies – Depression Scale

Positive Affect Schedule

Care-giving Impact Scale

Stroke Knowledge Test

Qualitative interview at completion of 6-month assessment

Stroke Support Person Journal

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Characteristic Full

(n=10) SD (n=10)

SC (n=11)

Female 8 (80) 8 (80) 8 (73)

Age 55 (10.9) 57 (14.9) 57 (19.4)

Spouse of patient 6 (60) 8 (80) 6 (55)

Lives with patient 7 (70) 7 (70) 8 (73)

Previous care experience 2 (20) 4 (40) 3 (27) Primary Daily Activity

working for pay caregiver/homemaker retired/disability

7 (70) 2 (20) 1 (10)

6 (60) 2 (20) 2 (20)

6 (55) 2 (18) 3 (27) University or more education 3 (30) 3 (33) 2 (18) Annual Family income over $70,000 3 (30) 2 (20) 3 (27)

Participant Characteristics

(n=31)

Quantitative Findings

Using HLM, no significant effect of intervention arm on any outcome variables

Stroke support person contact in full intervention arm (n=10):

median 5 sessions / participant

median 1 hour 53 minutes / participant

3.Qualitative Pilot Results

“Support Buffet”

Hunger Satiety

Factors influencing need for support:

- stroke severity - relevant knowledge e.g., of stroke, providing care, health care

“Support buffet” (options):

- Stroke Support Person - “TIRSFSP” educational resource (book) - health care professionals - friends/family/peers

Support Outcomes:

-Understands what to expect -Feels prepared for care-giving role Appetite

Factors influencing support use:

-Mastery -Mental Health -Ability to ask questions

Qualitative Results (n=19)

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Qualitative Results Summary

“Support” Buffet

Hunger Satiety

Hunger Supports

TIRSFSP SC

High

Low

Satisfied

Not Satisfied SSP

SD Appetite

Summary from Pilot

SSP spends 2 hours over 5 sessions with caregivers

Caregivers with high “hunger” benefit from SSP arm of TIRSFSP

Caregivers with low “hunger” benefit from self-directed TIRSFSP and standard care

Educational resource

What’s next?

 Full trial of intervention in urban and rural environments (Funded by Heart and Stroke Foundation)

 Goal is 300 caregivers

 >235 of sample recruited to date

 11 research sites across Canada

 2 more years to complete study

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Calgary Sydney Halifax Charlottetown

Barrie Toronto

Oshawa Kingston Ottawa Pembroke Thunder Bay

300 family caregivers; 11 sites

Oshawa and Barrie n=60

Ultimate Goal

Evidence that the intervention is beneficial to

Stroke families

Stroke care delivery ~ cost-effective option

Adoption by the Ontario Stroke System

Recommendation by Canadian Stroke Strategy as a model of family support

education and transition guidelines

Summary – Supporting Transitions

When supporting patients and families across transitions important to consider:

1. Consider “what”

 Educate and support patient and family corresponding to specific transition and needs 2. Consider “how”

 Identify key individual who provides support

 Specify service delivery procedures

 “Enable” patients and families

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