Date Presented 04/01/2022

Understanding the process of stroke caregiver decision making can best support the caregiver role to reduce burden. Results from a secondary analysis of interviews with stroke caregivers about decisions made were obtained through a grounded theory approach to uncover underlying mechanisms associated with the decision-making process. Seven categories were identified that can influence how information and training are passed on to caregivers to optimize outcomes.

Primary Author and Speaker: Sonia Lawson

PURPOSE: Each stroke care situation is unique. Information provided to caregivers must be individualized. When caregivers perceive a lack of information, it leads to feelings of unpreparedness and confusion (Al-Janabi, McLoughlin, Oyebode, Efstathiou, & Calvert, 2019). Rather than identify discrete information to provide, it may be more helpful to better understand the ‘process’ of how caregivers choose to use information provided and skills that were taught. This may be a better approach to support caregivers. When stroke caregivers feel supported in their role, they can make more confident decisions (Visvanathan et al., 2017). The purpose of the study was to identify factors that influence how stroke caregivers make decisions that address their confusion and increase their confidence to optimize the caregiver and stroke survivor experience. Research questions studied were: What is involved in stroke caregiver decision making? Are there particular factors that influence caregiver decisions?

DESIGN: This study utilized a grounded theory approach. A secondary analysis of interviews from eight caregivers from stroke survivor support groups was conducted within a group of seven researchers to examine underlying constructs pertaining to decision making. The research group format allowed several people to interpret the interviews to generate words/ideas, codes, and then categories. Independent analysis was conducted first, followed by group analyses to determine the categories. Participants ranged in age from 41 to 71 and had 4 to 66 years of experience as a caregiver. Seven of the caregivers were female and one was male.

METHOD: The grounded theory analysis was systematically implemented as recommended by Tie, Birks, & Francis (2019). First, an examination of existing literature on the decision-making processes of stroke caregivers was completed. Next, interviews were analyzed to for initial codes. Code categories were then identified in the intermediate coding phase. Advanced coding was conducted in order to further explain the categories in a storyline format. Lastly, a schematic was developed to represent the integration of categories, storylines, conceptual theory, and previous research.

RESULTS: Seven storylines were identified. They include negative feelings associated with the pressures of making decisions, research and knowledge about caregiving responsibilities, feelings of support from others in similar situations, the decision-making process, coping and dealing with the results of the decisions, and changes in process as the caregiver becomes more comfortable in their roles. These results help describe the decision-making process of stroke caregivers is and the factors that influence their decisions.

CONCLUSION: The storylines identified were preliminary but did answer the research questions. Additional study is planned to deepen each storyline or generate additional ones with additional interviews and observational data. Each care situation is unique so an overall stroke caregiver decision making theory may not be obtained. Despite this, understanding the ‘process’ of decision making may enhance the information and training provided to caregivers.

IMPACT STATEMENT: The results can aid occupational therapists to integrate supported decision-making strategies for caregivers in the comprehensive care of stroke survivors, illustrating the unique value of the profession. This can produce better quality of life outcomes for both the caregiver and stroke survivor.


Al-Janabi, H., McLoughlin, C., Oyebode, J., Efstathiou, N., & Calvert, M. (2019). Six mechanisms behind carer wellbeing effects: A qualitative study of healthcare delivery. Social Science & Medicine, 235.

Tie, Y.C., Birks, M., & Francis, K. (2019). Grounded theory research: A design framework for novice researchers. SAGE Open Medicine, 7, 1-8.

Visvanathan, A., Dennis, M., Mead, G., Whiteley, W. N., Doubal, F. N., & Lawton, J. (2017). Shared decision making after severe stroke: How can we improve patient and family involvement in treatment decisions? International Journal of Stroke, 12(9), 920–922.