Time for Living and Caring: An intervention to make respite more effective for caregivers.

Author(s): Lund, D.A., Utz, R.L., Caserta, M.S., Wright, S.D., Llanque, S. M., Lindfelt, C., Shon, H., Whitlach, C. J., Montoro-Rodriguez, J.

Published In: Int’l J. Aging and Human Development, 79 (2) 157-178

Study Aim/Purpose: This pilot study presents the rationale for a description of a promising intervention to enhance the effectiveness of respite services for family caregivers. The intervention pilot tested, Time for Living ad Caring (TLC), is founded on the understanding that respite, to be effective, should allow caregivers to tend to their own wellness, relationships, and other aspects of their daily lives that have been neglected due to their overwhelming caregiving tasks. 

Summary of Methods: The TLC intervention is based on the principles of the Selective Optimization of Compensation human development model. The intervention has specially trained service providers individually coaching caregivers on how to: 1) identify their unique circumstances, needs, and resources; 2) select individually tailored use goals for respite based on their priority needs and constraints; and 3) implement strategies for successful goal attainment. 

The study was tested with a convenience sample of 20 existing respite users, including four African Americans, three Latinos, and 13 Caucasians. Fourteen caregivers were randomly assigned into the intervention condition and six into the control condition. Those in the control group completed a pre- and post-survey to determine their satisfaction with respite time use and their perceived burden, depression, and experiences with caregiving. Of the 14 in the treatment group, seven were assigned to receive five weekly sessions with a facilitator and seven were assigned to receive three sessions held every other week. During each intervention session, participants completed surveys measuring their satisfaction with respite time-use, level of goal attainment and perceptions of caregiver burden, and satisfaction with caregiving. 

Summary of Results: The empirical quantitative results, while not large enough to conduct statistical analysis, were suggestive of the intervention’s potential effectiveness. Those in the control group did not have changes in reported satisfaction with respite time or perceived satisfaction with caregiving experiences, and their burden levels showed a slight increase. While the intervention group showed a slight improvement over the short intervention period in their satisfaction with respite time-use, a slight reduction in burden levels, although no notable changes in their satisfaction with caregiving. Qualitative results provided further evidence that participating caregivers found value in the intervention in that they recognized benefits to planning how they wanted to spend their respite time and setting specific goals empowered them to act on their preferences for time-use. In addition, the qualitative information revealed that the activities caregivers enjoy doing during their respite time varies greatly, reflecting the need for each caregiver to prioritize respite time-use based on their individual needs and circumstances. 

Study Limitations (as cited by authors): The authors acknowledge that the small pilot does not allow for quantitative analysis of the intervention’s outcomes nor can the qualitative data be used to confirm the benefits of the intervention. However, the mixed-methods findings do affirm that the TLC intervention model, used as an individualized approach with trained facilitators, can help caregivers effectively engage in respite activities that best match their unique needs and desires. 

Authors’ Discussion/Conclusions: Based on pilot study results and the authors’ past research documenting that respite is more effective in improving caregiver well-being when caregivers use the time as desired, they conclude that the TLC intervention and approach shows promise as an add-on to respite. They stress the need for an intervention such as TLC that can improve caregiver outcomes regardless of respite care type (such as adult cay centers, extended care, and in-home respite) or whether it is formal or informal respite. They also point out that respite service with TLC is an excellent complement, not a substitute for other sources of help for caregivers because it can provide the time needed for caregivers to acquire the other services and assistance needed, such as legal help, financial help, educational skill building resources, counseling, or self-care. It also provides time for caregivers to maintain employment outside the home, seek social or leisure activities, or pursue hobbies and other interests that may have been interrupted by their heavy caregiving responsibilities. 

The authors also point out that because the TLC intervention allows for variability in caregiver circumstances, it should be equally effective for racially and ethnically diverse caregivers because it allows all caregivers to select respite time activities that are specific to their own cultural preferences. 

Finally, the authors recognize that the TLC model tested in the pilot used a highly resource-intensive one-on-one approach with a trained facilitator that may not be feasible for widespread replication. They point to future research with planned randomized trials of the resource-intensive TLC model that holds promise for informing future development of more cost-effective approaches for delivering the intervention in the future.