Silent Partners in Care: Examining Care Transitions for Caregivers of Hip Fracture and Stroke Patients

Abstract

Background: Quality of care and patient safety have been demonstrated to be at increased risk during care transitions; making older adults with complex medical issues especially vulnerable due to the multifaceted care they require (Coleman, 2003; Cook et al., 2000; Forster et al., 2003; Murtaugh & Litke, 2002; Picker Institute, 1999; van Walraven et al., 2004). While a strong focus on patient issues during care transitions exists in current literature, there is a dearth of knowledge surrounding the role of informal caregivers in this process. As the senior population continues to grow in Canada, it is inevitable that the health system will be increasingly reliant upon informal caregivers to meet the demanding and complex care needs of older adults. This research explored informal caregiver experiences following an older patient’s medical crisis in order to foster a deeper understanding of caregiver needs during transitional care. This work will support efforts to develop viable interventions within formal care settings to better support and prepare individuals for informal care responsibilities (Canadian Caregiver Coalition, 2008; National Centre for Social and Economic Modelling, 2004). Methods: A qualitative, post-positivist grounded theory study was employed to acquire an understanding of the role and needs of informal caregivers during transitional care. Semi-structured interviews were conducted with six community and resource case managers, and informal caregivers of eight hip fracture and two stroke caregivers. Two additional interviews were conducted with hip replacement caregivers. Questions explored individual experiences interacting with and/or providing informal care, and honed in on observed and experienced challenges, support received, and recommendations for future efforts to support care. NVivo8 software facilitated qualitative data analysis through hierarchical coding (Glaser & Strauss, 1967). Results: Six properties of caregiver needs arose from the data, each consisting of several important ideas fostering its understanding. The core concept threading across all properties was building capacity to care. Combined, thematic interpretations were integrated into a comprehensive theory of caregiver needs to support a successful care transition from hospital to home, consisting of three layers: 1) Timeline of caregiver needs; 2) Instrumental needs; and 3) Emotional needs. A member-checking process of the theory consisting of both a focus group and individual interviews indicated high face and content validity, and highlighted priority areas for future interventions. Discussion: The developed substantive theory is a valuable tool for which to understand the instrumental and emotional needs of hip fracture and stroke caregivers along a timeline of transitional care between hospital and home. Focus group and individual feedback indicate strong endorsement for theory adoption as a guiding framework for an intervention strategy to support informal caregivers within formal care settings and throughout the transition home. Results suggest the potential to broaden the conceptualization of the substantive theory to a formal explanation of transitional care needs for other medical crises across numerous types of transitions between formal hospital settings and the community.