Feasibility and acceptability of an innovative hospital-based educational training for caregivers of patients with severe stroke at the Instituto Nacional de Ciencias Neurológicas in Perú in 2023

Abstract

Thesis (Master's)--University of Washington, 2024Background: Patients with severe stroke have high mortality and morbidity, and often lower quality of life. Stroke affects not only patients, but also family members and caregivers who assume new responsibilities and burdens such as emotional and psychological distress when caring for patients with new neurologic disabilities. Gaps in health care access in Lima, Perú include financial barriers for those of low socioeconomic status, the lack of a national palliative care training program, and insufficient caregiver assistance, which affects the continuity of care at a health facility as well as for home-based caregivers. All these factors negatively affect quality of life, mortality, and morbidity of patients with stroke. Caregiving training status is one of the main root causes for poor outcomes in patients with stroke. Therefore, we designed an innovative hospital-based training intervention to caregivers of patients with severe stroke. Methods: This implementation pilot study hybrid 3 type occurred from June to November 2023 and consisted of randomizing caregivers to two intervention arms of the hospital-based training intervention (online vs in-person). We evaluated implementation outcomes in accordance with Proctor et al. to evaluate feasibility, acceptability, and fidelity, and also employed the RE-AIM framework to evaluate reach, adoption and implementation of a hospital-based caregiving training for patients with severe stroke at the Instituto Nacional de Ciencias Neurológicas in Peru. Using a convergent mixed-methods design, we simultaneously collected quantitative and qualitative data to understand and explain findings on quantitative phase. Data were analyzed separately and then merged and triangulated for results, discussion, and conclusions. The educational training included nasogastric (NG) and foley tube management, bathing and cleaning, and mobilization. The quantitative phase consisted of a randomized 1:1 allocation of participants assigned to the training intervention: in-person versus website arms. For the qualitative phase, we administered 19 questionnaires through semi-structured interviews to caregivers and nursing stroke staff who participated in training and who cared for stroke patients to gain in-depth understanding of the intervention at one-month follow-up. Results: We recruited 38 participants and randomly assigned 19 to each intervention arm: in-person and virtual. The percentage of eligible participants enrolled in the study was 86%. All enrolled participants were retained in their assigned intervention arm. Seventy-nine percent of participants completed training, including 100% in the in-person arm compared to 57.9% of the virtual arm. Two validated questionnaires to measure caregiver’s burden were applied in more than 80% of the cases. The total acceptability reported by participants was 82.9%, (in-person training 94.4% versus virtual 70.6%). Fidelity of the intervention was 95% for in-person training and for virtual training the Median website log-in counts was 2, and median time spent by each participant at one-month follow-up was 284 minutes. We identified the following main themes from our qualitative interviews: (1) willingness to participate actively in the educational training from caregivers and nursing stroke staff (SNS); (2) barriers to training, including caregiver burden and family issues; (3) continuing care at home; (4) applying intervention components and performing follow-up; and (5) suggestions made by caregivers and SNS to add additional intervention components such as psychological support, rehabilitation, nutrition, and administrative counseling after patients’ discharge. Conclusions: The hospital-based educational training for caregivers was feasible and acceptable. Main facilitators identified were a positive influence and support for caregivers and nursing staff caring for patients with stroke. Family issues and caregiver burden were the main barriers. Further caregiver training should include additional components such as psychological support, rehabilitation and nutrition training, and administrative counseling after patient’s discharge