Transcript Timing it Right: Giving Family Caregivers the Support they Need

Timing it Right: Giving family
caregivers the support they
need when they need it!
Jill I. Cameron, PhD
Ministry of Health and Long-term Care Career Scientist
Assistant Professor
Adjunct Scientist, Toronto Rehab Institute
Department of Occupational Science and Occupational Therapy
Creating Leaders in OT
Presentation Objectives
1. Describe the Timing It Right framework
2. Share results of framework validation study
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Highlight caregivers changing needs for
support
Discuss different mechanisms for providing
this support
3. Discuss the next steps in this program of
research
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Why Family Caregivers?
 One in eight adult Canadians informally providing
care in the community
 Support patient rehabilitation
 Provide assistance with ADL, IADL, Med care
 Defer institutional care
 Health care system encourages brief hospitalization
and offers limited formal community services
 Family members assume caregiver role but receive
little to no formal preparation
 Experience poor mental and physical health
 Compromise care provided to stroke survivor
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Intervention Research
 Sorenson (2002)
 Caregivers of Elderly (60 + yrs of age)
 Including Alzheimer’s, elderly, stroke
 Most comprehensive (78 studies)
 Small to moderate improvements in caregiver
caregiver burden, mental health, quality of life.
 Larger effects:
 psycho-educational
 multi-component
 individual as opposed to group interventions.
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Visser-Meily, et al (2005)
 Stroke informal caregivers (22 studies)
 Interventions:
 Specialist Services
 Psycho-education
 Counseling
 Support
 During or shortly after hospital discharge
 Not enough focus on caregiver needs
 Counseling strategies may address caregiver needs
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Growing Need for Intervention
 Ontario Stroke System Best Practice Guidelines emphasize:
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Stroke prevention
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Transition management
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11. Provide opportunities for ongoing access to rehabilitation
and community services for stroke survivors and their
families…
Rehab management
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3. … educate family members about stroke prevention.
14. Assess the ability of the family and caregiver to support
stroke recovery process… education… caregiver burden
Community re-engagement
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16. Assist stroke survivor and family…community participation
18. Support caregivers in balancing personal needs and caregiving responsibilities…
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What are Interventions Missing?
 Care Continuum Perspective
 Things are changing:
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Place where care is provided/received
Availability of trained health care professionals
Treatment focus
Stroke survivor’s functional ability
 Corresponding change in caregiver role and,
therefore, needs for support
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Timing It Right Framework
 Comprehensive five-phased approach to support
caregivers from the hospital to the home
 Considers timing, setting, support needs, modifiable
outcomes
 Used with other theoretical approaches (e.g., social
learning theory)
 Premise: addressing phase-specific needs will
enhance caregiver preparedness and ease
transitions across care environments
Cameron & Gignac. Patient Educ Couns (in press)
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Framework Development
 Clinical course for stroke
 Review existing literature
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Caregiver needs
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Emotional, informational, training supports
quantitative and qualitative research
Specified “when” needs occurred
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Phases
1.
Event/diagnosis
2.
Stabilization
3.
Preparation
4.
Implementation
5.
Adaptation
Acute Care
Acute/Rehab
Home
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Social Support Context (Cohen, 1992)
Emotional
Informational
Social Support
Appraisal
Tangible &
Training
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Phase 1 – Event/diagnosis
 Timing: short duration
 Setting: acute care
 Caregiver Support Needs:
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Information: diagnosis, prognosis, current
treatment options
Emotional: fearful, anxious and need someone
to talk to
Training: N/A
Appraisal: N/A
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Event/Diagnosis
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Phase 2 – Stabilization
 Timing: short duration
 Setting: acute care
 Caregiver Support Needs:
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Information: cause of event, current care needs,
next steps
Emotional: uncertainty, need someone to talk to
Training: initial training to assist with ADL and
rehab therapies
Appraisal: N/A
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Stabilization
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Phase 3 – Preparation
 Timing: short to moderate duration
 Setting: acute care or inpatient rehab
 Caregiver Support Needs:
 Information: availability and how to access community
resources
 Emotional: mounting anxiety and uncertainty about
providing care in the home, social support
 Training: some practice of new ADL skills and rehab
therapies (weekend home visits?)
 Appraisal: feedback about ADL supporting activities
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Preparation
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Phase 4 – Implementation
 Timing: moderate duration
 Setting: home
 Caregiver Support Needs:
 Information: everyday management of ongoing
activities
 Information: potential impact of providing care on
caregiver everyday life and health
 Training: adapt care provision to the home
environment
 Emotional: fear and anxiety of adapting to providing
care in the home
 Appraisal: feedback on how they are managing in the
home
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Implementation
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Phase 5 – Adaptation
 Timing: long duration
 Setting: home
 Caregiver Support Needs:
 Information: community re-integration, planning for the
future – what if the caregiver gets sick?
 Emotional: support from others in similar situations
(e.g., support groups), relationship changes
 Training: assisting stroke survivor with community reintegration
 Appraisal: continued feedback on how they are
managing in the home
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Adaptation
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Targeting and Tailoring
 Intervention content “targeted” to caregivers
phase in TIR framework
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General set of needs per phase
 Intervention “tailored” to caregivers specific
circumstances
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E.g., Aphasia, mobility, incontinence, etc.
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Framework Validation
Study
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Research Objective
 To determine the support needs of urban and
rural family caregivers as they cross the care
continuum.
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Methodology
 In-depth qualitative interviews (approx 1 hr)
 Family caregivers to stroke survivors & health care
professionals
 Urban and rural
 Structured interview guide
 “stroke story”
 Specific support needs
 When/where needs occurred
 Professionally transcribed
 Framework analysis (Ritchie & Spencer, 1994)
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Participants - Caregivers
 Family caregivers to stroke survivors (n=24)
 Rehab (n=9), community (n=15)
 Community - aphasia centre (n=5)
 Aphasia/communication issues (n=14)
 Urban (n=14), rural (n=10)
 Age – median 65.5 years (36-77)
 Female – 17
 Spouse – 18
 Time since stroke – median 11 mths (1-143)
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Participants – Health Care
Professionals (n=14)
 Acute (n=4), rehabilitation (n=5), and
community (n=5)
 OT (2), PT (2), SLP (3), SW/CM (3),
RN/RPN/APN (4)
 Female (13)
 Years providing stroke care (mean 10.8,
range 1 to 30)
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Changing Information Needs
Phase
Needs
Event/Diagnosis
• Survival
• Prognosis
• Treatment options (e.g., tPA)
Stabilization
• Cause of stroke
• Process of care, hospital transfers
• Preparation for inpatient rehabilitation
Preparation
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Implementation
Adaptation
How to assist with rehab, ADL, 2° prevention
Process of community adjustment (HCP & peers)
Discharge info, community resources
Safety in home and community
• Care processes at home (HCP & Peers)
• Emergency contacts
• New information, treatment options
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Growing Information Needs
Information Needs
High
Low
Event/Diagnosis Stabilization Preparation Implementation Adaptation
PHASES/TIME →
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Phase 1 – Information Needs
The nurses and the doctors there, they did keep
us well informed of what was gong on and what
the care would become and how they would
switch the medications… which kind of put our
mind at ease. Rehab Caregiver, husband
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Phase 5 – Information Needs
… refresher course, refresher appointments…
but if there were some way of having smaller
groups with ongoing once a year training.
Aphasia caregiver, wife
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Tangible Supports
Phase
Needs
Event/Diagnosis
• Practical assistance: parking, blanket, calling family
• Referrals
Stabilization
• Assistance in home environment (family/friends)
• Preparation for inpatient rehab
• Desired: assistance with transportation, meals,
Preparation
Implementation
Adaptation
accommodation, finances
• Safety inspection in home, equipment
• Preparation for outpatient rehab and home care
• Administrative: discharge planning, financial
• Home care
• Respite
• Family support and assistance
• Desire continuation of implementation supports
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Phase 1 – Tangible Supports
Everybody was very nice… they would get me a
chair so I could stay, asked me if I needed a
coffee or something or a blanket. Rehab
Caregiver, husband
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Training Supports
Phase
Needs
Event/Diagnosis
• none
Stabilization
• none
Preparation
• ADL – transfers (e.g., bed to chair)
• Weekend passes – “try” providing care at home
Implementation
• Assist with rehab exercises
• Desired: feed back re care-giving activities
• “How am I doing?”
Adaptation
• Rehab exercises
• Communication skills – aphasia
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Phase 3 – Training
Interviewer: Did they teach you anything as
you prepared to go home?
Caregiver: Not really, not a lot and I guess
because I wasn’t there everyday at that point
and the days that I was, I could go and
watch him (in therapy). But that was about it.
Rural Caregiver, wife
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Phase 4 – Training/Appraisal
My needs were “Tell me that I’m doing things
right.” And that’s what I didn’t get. Aphasia
Caregiver, wife
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Emotional Supports
 Constant across care continuum:
 Moral support
 Understanding
 Empathy
 Optimism
 Mechanism
 Health care professionals throughout
 Family – question availability during acute care (rural)
 Peers – back in the community, support groups
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Phase 1 – Emotional Needs
you need just someone to prop you up and tell
you it’s going to be okay, or you know things are
going maybe be different. But not to get into to a
great detail with you then, you just need some
moral support then. Emotional support. Aphasia
Caregiver, wife
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Phase 5 – Emotional Needs
Interviewer: What do you think about when you
think to the future?
Caregiver: I’m very frightened because, I’ve
watched… the last little while you can see him
going downhill. I wonder constantly when
another one is going to happen. My own well
being. Just last week, I was to the doctor and I
have high blood pressure now. Rural Caregiver,
wife
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Mechanism of Support Delivery
 Changes across phases
 Health care professional during inpatient phases (1-3)
 Information, tangible, and training
 Peers during community phases (4-5)
 Learn from someone who has been through it
 Mixed HCP, peers, and family
 Emotional needs
 Do we need someone to oversee support needs?
 e.g., Stroke Support Person? Coach?
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Contribution
 Family caregivers support needs change
across the care continuum
 Informs support interventions
 Next steps
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Compare and contrast urban and rural
caregivers
Pilot test intervention using TIR framework
Full trial of intervention in urban and rural
environments – establish evidence!
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Acknowledgements
 Family caregivers and health care professionals who
participated
 TRI, Aphasia Institute, Renfrew CCAC
 Research Team – Monique Gignac, Gary Naglie,
Frank Silver, Shelley Sharp, Maureen Murdock
 Funding – ICE Grant from CIHR Strategic Training
Initiative in Health Care Technology and Place
(HCTP).
 Post-doctoral fellowship (JIC) CIHR IHSPR/IA/IGH
and CIHR HCTP
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Thank you!
Questions?
[email protected]
416-978-2041
Department of Occupational Science and Occupational Therapy