PROJECT CLUES: Problem-Solving Training for Family Caregivers of Persons with Severe Disabilities
Timothy R. Elliott, PhD
Department of Educational Psychology
Texas A&M University
College Station, TX
OVERALL SNAPSHOT OF CAREGIVER INTERVENTION/PROGRAM:
Developed in 2002 with support from the National Institute of Child Health and Development, the National Institute of Disability Research and Rehabilitation, National Center for Injury Prevention and Control at the Centers for Disease Control, Project CLUES is an individualized problem-solving intervention for family caregivers of persons with severe disabilities. Project CLUES was an extension and an integration of Project FOCUS (developed by the PI) and the Social Problem Solving Telephone Partnership model developed for family caregivers of stroke survivors by Grant and colleagues (Grant et al., 2001; Grant et al., 2002). The acronym “CLUES” represents key principles of effective problem solving and caregiver support. The project also oversampled women with disabilities to ensure adequate representation and to examine effectiveness of the intervention among these under-studied individuals. A systematic series of evaluations found the following benefits to caregivers:
1) Decrease in caregiver dysfunctional problem-solving styles
2) Increase in caregiver constructive problem-solving styles
3) Decrease in caregiver depression
4) Among caregivers receiving problem-solving training, decrease in care recipient depression
BACKGROUND RELATED TO THE DEVELOPMENT OF THE INTERVENTION/PROGRAM:
• Problem-solving training was patterned on the applications developed and studied in Project FOCUS and in Grant’s telephone partnership model in which problem-solving training was provided to family caregivers of stroke survivors (see Grant et al., 2001; Grant et al., 2002).
• To obtain detailed information about the nature and context of problems that caregivers face following traumatic brain injury, and of the problems faced by caregivers of adults with severe developmental disabilities and other congenital conditions (e.g., cerebral palsy), focus groups were conducted with family caregivers in these caregiving scenarios. This information was critical in assembling the card sort task to tailor problem-solving training for each caregiver.
• Training was provided to caregivers in the intervention group in 4 in-home sessions and 8 telephone follow-up calls over twelve months of participation. Control group participants received written educational materials and telephone calls at set intervals throughout their 12 months of participation.
TARGETED CAREGIVER POPULATION (AGE, ETHNICITY, CONDITION/DISEASE):
• Severe disabilities
• Women with severe disabilities: acquired, developmental and congenital
• Persons with traumatic brain injuries
• Similar protocols have also been developed by this research team for:
o Recent spinal cord injury
o Chronic spinal cord injury
MANUAL OF PROCEDURES:
A description of the problem-solving training techniques appeared in Kurylo, Shewchuk, and Elliott (2001) and a description of the card sort procedures can be found in Elliott and Shewchuk (2000). Details about the transcripts and techniques used in the telephone sessions can be found in Grant, Elliott, Giger, and Bartolucci (2001). A clinical trial of the Grant et al. (2001) model found significant effects of PST in lowering depression among caregivers of stroke survivors (Grant, Elliott, Weaver, Bartolucci, & Giger, 2002).
INTERVENTION/PROGRAM SPECIFIC OUTCOME MEASURES:
• Social Problem-Solving Inventory–Revised
• Center for Epidemiological Studies-Depression scale
• Satisfaction with Life scale
• Health Complaints
Taken at baseline and in 3 additional assessments throughout the year
LENGTH OF INTERVENTION/PROGRAM:
Originally designed to provide a structured, manualized sequence of training in problem-solving skills, our studies revealed that caregivers who were more distressed received more training in problem-solving principles over time than those who were less distressed. Distressed caregivers may require more sessions and greater intensity than caregivers who are less distressed.
NUMBER OF SESSIONS:
Monthly sessions for 1 year.
LENGTH OF EACH SESSION:
The first session with the caregiver required approximately 2-3 hours in a face-to-face session to conduct the baseline assessment and provide the orientation. Subsequent sessions ranged from 30 minutes to over an hour, depending on the needs and issues presented by the caregiver.
DESCRIPTION OF SESSION CONTENT:
The five basic principles of the social problem-solving model (identifying the problem, brainstorming solutions, critiquing the solutions, choosing and implementing a solution, and evaluating the outcome) were described in the initial face-to-face session in the home. A card-sort task that presented problems was used to help caregivers identify and prioritize problems unique to their situation. The interventionist helped the caregiver discuss feelings associated with the problem and generate a list of possible solutions to address the problem and any negative feelings associated with it.
Telephone sessions were based on scripts used in the telephone partnership protocol (Grant et al., 2002). A worksheet provided guidelines and prompts for each session. After the initial greeting, the interventionist discussed the value of a positive orientation for solving problems and for being a caregiver (while acknowledging caregiving as a challenge). The interventionist reviewed any progress on the problems, goals, and planned activities identified in the previous session. This required a review of the problem-solving plan and an evaluation of its relative success. The interventionist assisted the caregiver in identifying current problems and feelings associated with them. The caregiver explored possible solutions and goals with the interventionist, and developed plans, goals, and activities to address each problem and any negative feelings associated with it.
METHOD OF ADMINISTRATION/DELIVERY:
Mixed delivery: In-home PST sessions at months 1, 4, 8, and 12; remainder of monthly sessions delivered over phone
Formal counseling training not necessary; training in PST model is required
COST AND TIME CONSIDERATIONS:
Home visits occurred for each participant in Project CLUES. Telephone sessions were also conducted. Financial support and dedicated resources and personnel are needed to support these activities. Caregivers who exhibit clinical elevations of depression will likely require more sessions with greater intensity than other caregivers.
VIDEO CLIP OF INTERVENTION/PROGRAM:
A video demonstration of the PST approach with family caregivers entitled, “Caregiving” (Elliott, 2006) can be purchased from the American Psychological Association.
DOWNLOADABLE FACT SHEETS:
Available upon request from the principle investigator.
BRIEF DESCRIPTION OF EVIDENCE:
Caregivers of women with disabilities (Elliott, Berry, & Grant, 2009)
• PST provided in a combination of face-to-face and telephone sessions over 12 months may be effective in lowering the depression reported by family caregivers, regardless of their age and the time they have spent in the caregiver role.
• Similar to prior research, family caregivers of women with disabilities reported significant declines in depression over time as they received PST (Elliott & Berry, 2009; Elliott et al., 2008; Grant et al., 2002; Rivera, Elliott, Berry, & Grant, 2008).
• Family caregivers receiving PST reported significant increases in constructive problem-solving abilities.
Caregivers of persons with traumatic brain injury (Rivera, Elliott, Berry, & Grant, 2008)
• Family caregivers of persons with traumatic brain injury (TBI) who received PST as described above experienced significant decreases in depression after eight months of participation.
• These caregivers also reported significant decreases in health complaints after eight months of PST.
• Family caregivers receiving PST reported significant decreases in dysfunctional problem-solving abilities.
Effects of PST for Caregivers on Care Recipients (Berry, Elliott, & Grant, 2012)
• Caregivers who received PST reported a significant decrease in depression over time, and they also displayed gains in constructive problem solving abilities and decreases in dysfunctional problem-solving abilities.
• Care recipients of caregivers who received PST displayed significant decreases in depression over time, and these decreases were significantly associated with decreases in caregiver depression in response to PST.
Effects of Telephone-Based Problem Solving Training for Stroke Caregivers in Germany (Pfeiffer et al., in press)
• Caregivers who received problem-solving training in 2 home visits and 18 telephone contacts experienced significant decreases in depression over 12 months of participation
• Caregivers also experienced significant gains in their sense of competence and in leisure activity pursuits in response to problem solving training
•Gains were most pronounced for the treatment group over the first three months of intensive contact
Berry, J. W., Elliott, T., Grant, J., Edwards, G., & Fine, P. R. (2012). Does problem solving training for family caregivers benefit care recipients with severe disabilities? A latent growth model of the Project CLUES randomized clinical trial. Rehabilitation Psychology, 57, 98-112.
D’Zurilla, T.J., Nezu, A.M., & Maydeu-Olivares, A. (2002). Social Problem-Solving Inventory-Revised (SPSI-R): Technical Manual. North Tonawanda, NY: Multi-health Systems.
D’Zurilla, T.J., Nezu, A.M., & Maydeu-Olivares, A. (2004). Social problem solving: Theory and assessment. In E. Chang, T.J. D’Zurilla & L.J. Sanna (Eds.), Social problem solving: Theory, research, and training (pp. 11–27). Washington, D.C.: American Psychological Association.
Elliott, T., & Berry, J. W. (2009). Brief problem-solving training for family caregivers of persons with recent-onset spinal cord injury: A randomized controlled trial. Journal of Clinical Psychology, 65, 406-422.
Elliott, T., Berry, J. W., & Grant, J. S. (2009). Problem-solving training for family caregivers of women with disabilities: A randomized clinical trial. Behaviour Research and Therapy, 47, 548-558.
Elliott, T., & Shewchuk, R. (2000). Problem solving therapy for family caregivers of persons with severe physical disabilities. In C. Radnitz (Ed.), Cognitive-Behavioral Interventions for Persons with Disabilities (pp. 309-327). New York: Jason Aronson, Inc.
Elliott, T., Brossart, D., Berry, J. W. & Fine, P. R. (2008). Problem-solving training via videoconferencing for family caregivers of persons with spinal cord injuries: A randomized controlled trial. Behaviour Research and Therapy, 46, 1220-1229.
Grant, J.S., Elliott, T., Giger, J., & Bartolucci, A. (2001). Social problem solving telephone partnerships with family caregivers. International Journal of Rehabilitation Research, 24(3), 181-189.
Grant, J., Elliott, T., Weaver, M. Bartolucci, A., & Giger, J. (2002). A telephone intervention with family caregivers of stroke survivors after hospital discharge. Stroke, 33, 2060-2065.
Grant, J., Elliott, T., Weaver, M., Glandon, G., & Giger, J. (2006). Social problem-solving abilities, social support, and adjustment of family caregivers of stroke survivors. Archives of Physical Medicine and Rehabilitation, 87, 343-350.
Grant, J., Weaver, M., Elliott, T., Bartolucci, A., & Giger, J. (2004). Family caregivers of stroke survivors: characteristics of caregivers at-risk for depression. Rehabilitation Psychology, 49, 172-179.
Kurylo, M., Elliott, T. R., & Shewchuk, R. (2001). FOCUS on the family caregiver: A problem-solving training intervention. Journal of Counseling and Development, 79, 275–281.
Ramkumar, N., & Elliott, T. (2010). Family caregiving of persons following neurotrauma: Issues in research, service and policy. NeuroRehabilitation, 27, 105-112.
Rivera, P., Elliott, T., Berry, J., & Grant, J. (2008). Problem-solving training for family caregivers of persons with traumatic brain injuries: A randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 89, 931-941.
Rivera, P., Elliott, T., Berry, J., Oswald, K., & Grant, J. (2007). Predictors of caregiver depression among community-residing families living with traumatic brain injury. NeuroRehabilitation, 22, 3-8.
Pfeiffer, K., Beische, D., Hautzinger, M., Berry, J.W., Wengert, J., Hoffrichter, R., Becker, C., van Schayck, R., & Elliott, T. R. (in press). Telephone-based problem-solving intervention for family caregivers of stroke survivors: A randomized controlled trial. Journal of Consulting and Clinical Psychology. http://dx.doi.org/10.1037/a0036987 (ahead of print).