Exploring the Decision-Making Process of Caregivers of Stroke Survivors When Choosing to Utilize Community Resources to Manage the Caregiver Role

Abstract

Date Presented 03/26/20

The decision-making processes of five long-standing caregivers of stroke survivors, when choosing to use community resources to manage their roles, were studied using qualitative methods supported by quantitative data. Prioritizing self-help, negotiating relationships, assessing the “fit ” of resources and supports, and navigating uncertainty were themes that influenced the decisions made by the caregivers. Strategic decisions made by caregivers can ease the burdens associated with this role.

Primary Author and Speaker: Sonia Lawson

Additional Authors and Speakers: Elizabeth Malott

PURPOSE AND RESEARCH QUESTIONS: Healthcare professionals can provide support for the continuing and dynamic needs of caregivers. While many resources exist for caregivers, current literature continues to outline the burden placed on caregivers and the under-utilization of resources for support (Cecil et al., 2013; Creasy et al., 2013). Learning about the decision-making process of caregivers to access community services for themselves and their care recipient can offer ways to optimize the utility, accessibility, and availability of services. Long-term caregivers are in a position to describe factors that influenced their decision making over time and the adaptive behaviors and new routines they have established. Caregivers of stroke survivors face a particularly challenging situation in adapting to a new care situation suddenly.

The purpose of this descriptive study utilizing qualitative measures (interviews) supported by quantitative data (e.g., questionnaires) was to explore the experience of caregivers of stroke survivors on their decision to access caregiver community supports and resources and the cognitive processes and factors involved in the decision-making process to answer the following questions: 1) How do caregivers describe making decisions about the caregiving process with regard to accessing resources and supports? 2) How does the caregiving decision-making process change over time? The Occupation Adaptation model provided the framework for the study (Schkade & Schultz, 1992).

DESIGN AND METHODOLOGY: Five caregivers of stroke survivors were solicited for the study from local support groups and community programs for stroke survivors. All stroke care recipients had some level of aphasia and varying cognitive and physical deficit. Qualitative data was collected using two semi-structured interviews to obtain comments about caregivers’ decision making. Quantitative measures (i.e., Caregiver Use of Community Resources Survey [created by the research team], Modified Community Service Attitude Inventory [Collins et al., 1991]) were used to view the extent of supports, resources, and services participants already used and those they were willing to use.

RESULTS AND CONCLUSIONS: Qualitative data were individually analyzed for themes and then examined for similarities across cases. Quantitative data were analyzed for observed patterns in utilization of community resources. Prioritizing self-help, negotiating relationships, assessing the “fit” of resources and supports, and navigating uncertainty were common themes that changed over time since stroke onset and were influenced by interactions with health professionals. All participants used at least one community support service (e.g., respite, home health aide, and support groups) and had positive attitudes about community resources and supports when they perceived they were needed.

Participants expressed becoming more comfortable and competent in their decision-making to use community resources over time, supporting the suggestion that as time increases, caregivers implement adaptive response modes and are more likely to use services after becoming more familiar with navigating the healthcare system to enable the stroke care recipient to continue recovery at home. It is important that health care professionals explicitly address caregiver concerns, consider how they change over time, and direct them to appropriate resources and supports.

IMPACT STATEMENT: With knowledge of decision making processes, therapists can improve rehab outcomes of their patients by effectively addressing caregivers’ needs. Therapists can powerfully influence service delivery in caregiver training and education that contributes to better management of healthcare costs.

References

Cecil, R., Thompson, K., Parahoo, K., & McCaughan, E. (2013). Towards an understanding of the lives of families affected by stroke: A qualitative study of home carers. Journal of Advanced Nursing, 69(8), 1761-1770. doi:10.1111/jan.12037.

Collins, C., Stommel, M., King, S., & Given, C. W. (1991). Assessment of the attitudes of family caregivers toward community services. The Gerontologist, 31(6), 756-761. doi:10.1093/geront/31.6.75.

Creasy, K., Lutz, B., Ford, A., Martz, C., & Young, M. (2013). The impact of interactions with providers on stroke caregivers’ needs. Rehabilitation Nursing, 38(2), 88-98. doi:10.1002/rnj.69.

Schkade, J., & Schultz, S. (1992). Occupational adaptation: Toward a holistic approach for contemporary practice, Part 1. American Journal of Occupational Therapy, 46(9), 829-837. doi:10.5014/ajot.46.9.829.