Problem-Solving Training Effects on Family Caregivers and Care Recipients

1. Problem-Solving Training Effects on Family Caregivers and Care Recipients Timothy R. Elliott, Ph.D.

2. 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.

3. Policy PerspectiveNational 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

4. 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 priorityTalley & Crews, 2007 Family Caregiving And Disability

5. Clinical PerspectiveConsistent 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”

6. 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

7. Theoretical PerspectiveSocial Problem Solving Training for Family Caregivers of Persons with Acquired Disabilities

8. The Social Problem Solving Modelof AdjustmentD’Zurilla & Goldfried, 1971 General Orientation to Problem Solving Problem Definition Generation of Alternatives Decision Making and Implementation Verification

9. 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

10. 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

11. Problem Solving Training for Caregivers • 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

12. 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

13. Problem Solving Training for Family Caregivers WorksResults from RCTs Family Caregivers of Stroke Survivors Grant, Elliott et al., Stroke, 2002 • 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 Injuries • Elliott, 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 • ,

14. Tailoring PST to Specific ProblemsItems Identified by Caregivers in a Focus Group Most Important Least Important 1 2 3 4 5 6 7 Lack of Time 6 Sexual Relations 21 Patient Cries 5 Lack of Appreciation 18 Saying “No” 16 Bowel and Bladder Acc. 24 Hateful Attitude 1

15. http://main.uab.edu/tbi/show.asp?durki=110890&site=2988&return=66594http://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

16. Methodological PerspectiveWe 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

17. Therapeutic Responses: Three Common Trajectories of Change in Response to Counseling J.-P. Laurenceau et al. Clinical Psychology Review 2007

18. 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

19. 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

20. PROJECT CLUES: Modeling Effects of PST on Family Caregivers and Care Recipients N = 147 • 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.

21. PST for Caregivers of Persons with Severe DisabilitiesCLUES 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

22. Education “Control” Group Monthly telephone calls 10 minutes minimum each CGsreceived a folder with information to be read before each telephone contact Topics included: aging, dental health, disaster preparedness, relaxation, physical fitness, respite, pain

23. 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

24. Caregivers assessed for eligibility n = 411 Excludedn = 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

25. 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

26. Care Recipient Medical Conditions PST • N = 74 • TBI = 35Cerebral Palsy = 10Stroke = 14Mental Retardation = 5Alzheimer's Disease = 2 • Multiple Sclerosis = 1Autism = 1Angelman'sSyndr. = 1Polio = 1Fetal Hydantoin = 1Tubular Sclerosis = 1Rett's Syndrome = 1Prader-Willi = 1 Control • N = 73TBI = 34Stroke = 12Mental Retardation = 8 • Cerebral Palsy = 6Dementia = 3Alzheimer's Disease = 2Aneurysm = 1SCI = 1 • Chronic Pain = 1Down's syndrome = 1Seizure disorder = 1Arthritis = 1Scoliosis = 1Muscular dystrophy = 1

27. Follow-Up PST Lost 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 staff n = 1 No reasons recorded n = 2 Control Lost to follow-up (n = 7) Unable to contactn= 1 Care recipient moved out n= 1 Care recipient died n= 2 Care recipient placed in residential facilityn= 2 No reasons recorded n= 1

28. Analysis N = 147 dyads PST • All 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 Control • All 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

29. 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

30. A Latent Growth Model to Predict Outcomes Outcome T1 Outcome T2 Outcome T3 Outcome T4 Int Slope Treatment Tx=1 Cn=0

31. LGM Results: Caregiver Outcomes

32. PST Reduces Caregiver Depression Over 12 Months

33. PST Produces Similar Effects on Depression for TBI and non-TBI Caregivers Multiple Group Analysis (TBI vs Other) 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).

34. PST Reduces Caregiver Dysfunctional Problem Solving Over 12 Months

35. PST Increases Caregiver Constructive Problem Solving Over 12 Months

36. LGM Results: Care Recipient Depression

37. PST Reduces Care Recipient Depression (HAMD) Over 12 Months

38. 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).

39. Parallel Process Mediation Model: Caregiver Depression (CES-D) and Care-Recipient Depression (HAMD) Overall Model Fit Chi-sq = 19.04, p=.94 CFI = .99 RMSEA = .00 CES-D T1 CES-D T2 CES-D T3 CES-D T4 HAMD T4 HAMD T1 HAMD T2 HAMD T3 -1.40* Treatment Tx=1 Cn=0 .24* .04* Indirect Path (red arrows) Est. = -.33 (SE=.11), p < .01 CES-D Int HAMD Int HAMD Slope CES-D Slope * p<.05

40. Direct Effects of Caregiver Depression (CES-D) on Care-Recipient Depression (HAMD) HAMD T1 HAMD T2 HAMD T3 HAMD T4 CES-D T1 CES-D T2 CES-D T3 CES-D T4 .039** .038† .055** .059*** Overall Model Fit Chi-sq = 26.1, p=.46 CFI = .99 RMSEA = .004 Int Slope † p<.10 * p<.05 ** p<.01 *** p<.001 Treatment Tx=1 Cn=0 - 1.34*

41. 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

42. 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

43. Thank You telliott@tamu.edu