problem-solving training effects on family caregivers and care recipients timothy r. elliott, ph.d
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Problem-Solving Training Effects on Family Caregivers and Care Recipients
Timothy R. Elliott, Ph.D.
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Acknowledgements• National Institute for Disability Research and
Rehabilitation
• National Institutes of Health– National Institute of Child Health
and Development
• Centers for Disease Control and Prevention– National Center for Injury
Prevention and Control
Collaborators
Jack Berry, Ph.D., Joan Grant, Ph.D.
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Policy Perspective National Scope of Caregiving
• Currently, 44 million Americans over the age of 18 are in caregiver roles
• Caregivers likely have more influence on care recipient health than any single health care provider
• Yet they do not receive ongoing training or routine
access to support commiserate with their roles, tasks and responsibilities
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• High rates of acquired disability– Disproportionate number of these are men– Numbers increasing with wounded from OIF/OEF
• Life expectancy for persons with disability continues to increase
• Health and well-being of family caregivers – and their ability to assist their care recipients – is now a public health priority Talley & Crews, 2007
Family Caregiving And Disability
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Clinical Perspective Consistent with Chronic Care (cf. Wagner, et
al.)and Family-Centered Care (cf. Weihs, et al.),
Partnership Models • Help family caregivers to be more expert in self-
regulation, managing demands• Help family caregivers operate competently as formal
extensions of health care systems• Help them address tasks and routines “…essential to
family functioning”
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Partnership Models
• Provide training and support to family caregivers in the community
• Tailor services to meet the needs of each individual family
• Promote use of long-distance technologies to provide training in the home
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Theoretical Perspective Social Problem Solving Training for Family Caregivers of Persons with
Acquired Disabilities
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The Social Problem Solving Modelof Adjustment
D’Zurilla & Goldfried, 1971 • General Orientation to Problem Solving• Problem Definition• Generation of Alternatives• Decision Making and Implementation• Verification
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Effective Problem-Solvers
– Ward Off Negative Emotions – Promote Positive Emotions– Inhibit Impulsive Reactions– Motivated toward Solving Problems – Generate Solutions– Make and Implement Choices– Evaluate Progress and Outcome
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Caregiver Problem-Solving Abilities Predict Adjustment• Caregivers with ineffective styles report
increasing levels of depression, anxiety, ill health over time– Elliott et al. 2001, Grant et al. 2006
• Effective problem-solving ability – adjustment association independent of stress– Noojin & Wallander, 1997
• Care recipients who have caregivers who possess dysfunctional styles are more likely to develop secondary complications – Elliott et al., 1999, Kurylo et al. 2004
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PST teaches skills necessary to be an effective problem solver
PST can be used to help caregivers:
• Develop a positive, proactive orientation to problem situations
• Have a better understanding of the components involved in interpreting a problem situation
• Increase their actual problem solving skills
Problem Solving Training for Caregivers
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Problem-Solving Training (PST) for Family Caregivers• Stroke caregivers Review by Lui et al., 2005• Mothers of children with cancer Sahler et al.
2005 • Parents of children with traumatic brain
injuries (TBI) Wade et al., 2006a, 2006b• Individuals with cancer and their caregivers
Bucher et al., 1999; Nezu et al., 2003
http://www.apa.org/pi/about/publications/caregivers/index.aspx
http://www.apa.org/pi/about/publications/caregivers/practice-settings/intervention/individual.aspx
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Problem Solving Training for Family Caregivers Works Results from RCTs
Family Caregivers of Persons with Traumatic Brain Injuries Rivera, Elliott et al. Archives of Physical Medicine and Rehabilitation, 2008
Family Caregivers of Persons with Spinal Cord InjuriesElliott, Brossart et al., Behaviour Research & Therapy, 2008
Family Caregivers of Persons with Recent-Onset Spinal Cord Injuries Elliott & Berry, Journal of Clinical Psychology, 2009
Family Caregivers of Women with Severe Disabilities Elliott, Berry, & Grant, Behaviour Research & Therapy, 2009,
Family Caregivers of Stroke Survivors Grant, Elliott et al., Stroke, 2002
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Tailoring PST to Specific ProblemsItems Identified by Caregivers in a Focus Group
1 2 3 4 5 6 7
Least Important Most Important
SexualRelations 21
Saying “No” 16
Bowel and Bladder Acc. 24
Lack of Time
6
HatefulAttitude
1
Patient Cries
5
Lack of Appreciation
18
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• http://main.uab.edu/tbi/show.asp?durki=110890&site=2988&return=66594
This interactive program is designed to offer caregivers 3 techniques to help improve their health and quality of life.
1 - Card Sort 2 - Problem Solving
3 - Stress Relief
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Methodological Perspective We Use Modeling Techniques
• Theoretical and Methodological Reasons
– What is the outcome? A single point in time? – For us, the trajectory of the response to PST over
time is important– Literature mixed about the response to PST – Concerns about pre-existing characteristics
resources, etc., that might not be equally distributed by randomization (particularly with small Ns)
– Use of all available data
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Therapeutic Responses: Three Common Trajectories of Change in Response to Counseling
J.-P. Laurenceau et al. Clinical Psychology Review 2007
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Does Problem-Solving Training for Family Caregivers Benefit Care Recipients? • We know that caregiver problem-solving styles
are associated with care recipient secondary complications – e.g., depression, pressure sores
• Care recipients reported less depression and improvements in QoL as their caregiver received PST – SCI; Elliott et al. 2008
• But we do not know the mechanisms by which PST for caregivers would influence care recipient adjustment
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Would the Effects of Problem-Solving Training for Family Caregivers Benefit Care Recipients with TBI?
• Prior study revealed that caregivers of persons with TBI experienced a non-linear response to PST over time– Their depression scores first increased before decreasing
significantly in response to PST; Rivera et al. 2008• Other caregivers have often shown a more linear
trajectory in response to PST• We do not know if care recipients with TBI
would differ in their response to PST for caregivers• We need to know if effects are isolated to specific
conditions, and determine if the effects of PST are portable and generalizable across caregiver scenarios
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• Caregivers– 87.7% female– 74.8% Caucasian, 23.8% African American– Mean Age = 56.6 yrs.– Median duration caregiving = 55 months (Mean=132 mo.)– Relationship to recipient: 52% parents, 12% spouses, 5% siblings
• Care Recipients– 55.1% female– 76.8% Caucasian, 22.5% African American– Mean Age = 44.9 yrs.
PROJECT CLUES: MODELING EFFECTS OF PST ON FAMILY
CAREGIVERS AND CARE RECIPIENTS N = 147
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PST for Caregivers of Persons with Severe Disabilities
CLUES• Problem Solving Training
– Four face-to-face sessions in the caregiver residence with the interventionist• Baseline and at months 4, 8, 12
– Telephone sessions in other months• Interventionist adhered to a script
PST tailored to address specific problems identified by each caregiver at each session
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Education “Control” Group• Monthly telephone calls• 10 minutes minimum each• CGs received a folder with information
to be read before each telephone contact
• Topics included: aging, dental health, disaster preparedness, relaxation, physical fitness, respite, pain
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Exclusion Criteria• CGs had to be 18 years or older • Be clearly identified as a caregiver (by the caregiver
and the care recipient)• Live in the same household as the person with a
disability • Provide part-time or full-time care• CR had a diagnosed disability • Had to have a telephone at home to be in the project• Agree to random assignment group• Were knowledgeable of our duty to report any
possible abuse observed in or reported by the CR
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Caregivers assessed for eligibilityn = 411
Excluded n = 264 Did not meet inclusion criteria
n = 122 Refused to participate
n = 58 No response to calls or letters
n = 67 Erratic behavior, did not keep
initial home appointment n = 17
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Treatment Allocation
Groups did not differ significantly in• Caregiver or care recipient demographics
• Outside help or financial assistance• Caregiver burden or mental status
• Care Recipient mental status or functional independence
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Care Recipient Medical Conditions
PSTN = 74
TBI = 35Cerebral Palsy = 10
Stroke = 14Mental Retardation = 5
Alzheimer's Disease = 2Multiple Sclerosis = 1
Autism = 1Angelman's Syndr. = 1
Polio = 1Fetal Hydantoin = 1
Tubular Sclerosis = 1Rett's Syndrome = 1
Prader-Willi = 1
ControlN = 73
TBI = 34Stroke = 12
Mental Retardation = 8Cerebral Palsy = 6
Dementia = 3Alzheimer's Disease = 2
Aneurysm = 1SCI = 1
Chronic Pain = 1Down's syndrome = 1Seizure disorder = 1
Arthritis = 1Scoliosis = 1
Muscular dystrophy = 1
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Follow-Up
PSTLost to follow-up (n = 14) Unable to contact n = 2
Care recipient moved out of caregiver residence n = 2 Care recipient died n = 1 Care recipient placed in residential facility n = 3
Caregiver no longer interested
n = 2 Caregiver had a stroke n = 1 Caregiver inappropriate to
staffn = 1
No reasons recorded n = 2
Control
Lost to follow-up (n = 7) Unable to contact n = 1
Care recipient moved outn = 1
Care recipient died n = 2
Care recipient placed in residential facility n = 2 No reasons recorded
n = 1
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AnalysisN = 147 dyads
PSTAll four assessments = 44
Baseline only = 5 First and second assessments
only = 4 First, second and third
assessments only = 1 First, second and final
assessments only = 4 First and final assessments
only = 3 First and third assessments
only = 2 First, third and final
assessments only = 5 First and second assessments complete,
partial third only = 2
First, second and third complete, final partial
only = 2 First assessment complete,
second partial only = 1 First, third and final
assessments complete, second partial only = 1
ControlAll four assessments = 49
Baseline only = 2 First and second assessments
only = 3 First, second and third
assessments only = 1 First, second and final
assessments only = 6 First and final assessment
only = 3 First, third and final
assessments only = 4 First, second and third
assessments, and partial final only = 2
First and second assessments, third and final partials
only = 1 First, second and final
assessments, and third partial only = 1
First, third and final assessments, and second
partial only = 1
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Outcome Measures• Caregiver Depression (CES-D)• Caregiver Physical Symptoms (PILL)• Caregiver Satisfaction with Life (SWL)• Caregiver Constructive PS (SPSI-R)
– Composite of Positive Problem Orientation and Rational Style
• Caregiver Dysfunctional PS (SPSI-R)– Composite of Negative Problem Orientation and Impulsive &
Avoidant Styles
• Care Recipient depression (HAM-D)Assessments made by a data collection technician -- with no
knowledge of group assignment -- at pretreatment baseline, 4th month, 8th month, and 12th month
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OutcomeT1
OutcomeT2
OutcomeT3
OutcomeT4
TreatmentTx=1 Cn=0
Int Slope
A Latent Growth Model to Predict Outcomes
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LGM Results: Caregiver Outcomes
Caregiver Outcomes Slope SE t χ2 CFI RMSEA
Depression (CESD) -1.37 0.69 -1.99* 9.30 .99 .041
Physical Symptoms 0.08 0.35 0.24 8.32 .99 .036
Satisfaction with Life -0.29 0.37 -0.81 12.5 .98 .073
Constructive PS 2.21 0.86 2.57** 7.80 1.00 .028
Dysfunctional PS -1.40 0.61 -2.30* 10.2 .99 .056
Note. All χ2 ns, p>.05 * p<.05 ** p<.01
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PST Reduces Caregiver Depression Over 12 Months
1 2 3 410
11
12
13
14
15
16
17
18
19
20
ControlPST
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PST Produces Similar Effects on Depression for TBI and non-TBI Caregivers
1 2 3 410
12
14
16
18
20
22
24
PST (Other)CT (Other)PST (TBI)CT (TBI)
TBI
Other
Chi-sq. Difference tests: Significant intercepts between TBI and non-TBI (p<.01); Treatment effect on slopes not significantly different for TBI and non-TBI (p=.60).
Multiple Group Analysis (TBI vs Other)
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PST Reduces Caregiver Dysfunctional Problem Solving Over 12 Months
1 2 3 415
17
19
21
23
25
27
29
ControlPST
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PST Increases Caregiver Constructive Problem Solving Over 12 Months
1 2 3 452
54
56
58
60
62
64
66
ControlPST
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LGM Results: Care Recipient Depression
Slope SE t χ2 CFI RMSEA
Care Recipient
Depression (HAMD) -0.32 0.14 -2.37* 1.82 1.00 .000
Note. χ2 ns, p>.05 * p<.05
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PST Reduces Care Recipient Depression (HAMD) Over 12 Months
1 2 3 40
0.5
1
1.5
2
2.5
ControlPST
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How does PST for caregiversaffect care recipient
depression?• May be possible that caregiver mood (which was improving due
to treatment) can affect care recipient mood.• This phenomenon goes by many names: Emotional Contagion, Affective “Mirroring,” Emotional Convergence,
Co-regulation, Emotional Transmission, and Social Entrainment
(among others).
• Many experience-sampling and diary studies find emotional congruence in couples and families over time (Larsen & Almeida, 1999).
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HAMDT1
HAMDT2
HAMDT3
HAMDT4
HAMDInt
HAMDSlope
Overall Model FitChi-sq = 19.04, p=.94
CFI = .99RMSEA = .00
* p<.05
Parallel Process Mediation Model: Caregiver Depression (CES-D) and Care-Recipient Depression (HAMD)
CES-DT1
CES-DT2
CES-DT3
CES-DT4
CES-DInt
CES-DSlope
.04*.24*
TreatmentTx=1 Cn=0
-1.40*
Indirect Path (red arrows)Est. = -.33 (SE=.11), p < .01
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CES-DT1
CES-DT2
CES-DT3
CES-DT4
TreatmentTx=1 Cn=0
Int Slope
HAMDT1
HAMDT2
HAMDT3
HAMDT4
- 1.34*
.039** .038† .055** .059***
Overall Model FitChi-sq = 26.1, p=.46
CFI = .99RMSEA = .004
† p<.10 * p<.05 ** p<.01 *** p<.001
Direct Effects of Caregiver Depression (CES-D) on Care-Recipient Depression (HAMD)
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What We Have Learned
Caregivers benefit from tailored PST provided to them in the home via telephone sessions and face-to-face sessions
….but these benefits may occur for reasons that are not theoretically apparent
Care recipients may also benefit over time as their caregivers experience less distress in response to PST
Contemporary modeling techniques are necessary for understanding the apparent mechanisms of change and the nature of the therapeutic responses of caregivers and care recipients to PST
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Issues• Concerns about how clinically meaningful the
improvements may be for both caregiver and care recipients
• May be difficult to replicate “tailored” PST to caregivers, essential in the partnership model, in a multi-site clinical trial
• Reconsider inclusion criteria