Mary Ellen Young

Project Title
Bridging the Gap: Meeting the Needs of Stroke Patient/Caregiver Dyads

Role
Co-Investigator; Barbara Lutz, RN, Principal Investigator;

Funding Agency
NIH/NINR

Funding Period
March 2010 – February 2013

Abstract
While there is a substantial body of research on stroke caregiving, most of it has focused on the impact of caregiving post-discharge from rehabilitation or acute care. Based on our previous work and other research, we have identified the need for a pre-discharge comprehensive risk assessment of the stroke patient/caregiver dyad, i.e. a dyad Risk Assessment Profile (RAP). The RAP will assess critical caregiver factors (e.g. physical and mental health history, caregiving experience, physical capacity, etc) with patient factors (e.g. functional status, age, co-morbidities) and environmental factors, including external resources, (e.g. financial resources, living arrangements, transportation) and combine them into a dyad risk profile. The profile will identify areas of specific need and risk, and will help the rehabilitation team to better tailor interventions during inpatient rehabilitation to meet the post-discharge needs of stroke patients and their spousal caregivers. Therefore, the specific aims of this research study are to:
Specific Aim 1 (SA 1): Develop and pilot a Risk Assessment Profile (RAP) for stroke patient/caregiver dyads to evaluate patient need and caregiver capacity and identify potential post-discharge risks for patients and their spousal caregivers.
Specific Aim 2 (SA 2): Determine how the dyad RAP influences treatment, discharge planning, and post-discharge outcomes in the inpatient rehabilitation clinical practice.
Specific Aim 3 (SA 3): Determine the feasibility of implementing the dyad RAP as part of the inpatient rehabilitation admission assessment.

In our previous grounded theory study we identified the need for a tripartite risk assessment of the caregiver, patient, and environment as part of the inpatient rehabilitation facility (IRF) admission assessment. In this study we are applying a mixed methods approach wherein quantitative data will be embedded in a qualitative (grounded theory) design.82 Because this study focuses on process (piloting a comprehensive dyad risk profile) but also considers outcomes (how the risk profile influences practice and post-discharge outcomes), the grounded theory (qualitative) design is primary. Quantitative data will be used to “clarify, explain, [and] more fully elaborate the results of the [qualitative] analyses,”83 (p. 248) to corroborate and verify the qualitative findings,83 and to describe sample characteristics. Grounded theory is a naturalistic, systematic research method designed to explore areas of inquiry that have not been well researched or developed. It is a dynamic method in that review of the literature, generation of substantive and theoretical questions, and collection and analysis of data occur simultaneously rather than in a linear sequence.84, 85 It has been used successfully in delineating the complexities of ‘real-world’ processes. For example, Caron and Bowers86 used grounded theory to describe informal caregiving of an aging spouse. Researchers studying medical decision-making have advocated for this type of in-depth qualitative research in real-world decision-making.87 Using grounded theory to develop and evaluate the feasibility of implementing a risk profile based on a systematic assessment of the caregiver, along with data about the patient (already included in the medical record), and the environment/external resources will provide a clearer picture of the issues the caregiver and patient will face when they get home. Based on this risk profile, the research team will develop recommendations about the dyads’ needs and risks. The rehabilitation team can then tailor the treatment and discharge plans to address these needs and risks during inpatient rehabilitation. The RAP will also provide the patient, caregiver, and other family with the data they need to make discharge decisions in consultation with the rehabilitation team.