Understanding Caregiver Burden for Hip and Knee Replacement Surgery Patients

Women's College Hospital25 enrolled

Overview

Caregiver burden is the response to the emotional, financial, physical, psychological, and social stressors associated with having to care for another family member. Previous studies have looked at the impact of caregiver burden in caregivers caring for loved ones dealing with long-term disease, such as dementia. The research has found that one in three caregivers suffer from depression, and experience high levels of stress and anxiety. However, these findings may not be relatable to the outpatient surgical setting. The purpose of this study is to find out how various factors such as the physical, emotional, social, and financial burden impact caregivers who are responsible for providing care to patients who are undergoing same-day surgical procedures that are traditionally performed as inpatient surgery. By understanding this potential burden on the caregiver, we hope that future healthcare improvements can be made to minimize this impact on the patients and their caregiver.

The extent of caregiver burden in the acute postoperative outpatient settings, immediately following major orthopedic surgery that has traditionally been performed in an inpatient setting, remains unknown. Care giving places a tremendous amount of physical and mental stress onto the caregiver, which may result in the "hidden patient" in the caregiver. It is expected that by 2026, 51% of TJA will be performed as outpatient procedures. Building on the successes of the country's first outpatient TKA program at Women's College Hospital, and with the expansion to include outpatient THA procedures, it is now important to understand whether or not our innovative ambulatory model is simply transferring the burden of postoperative care and recovery from nurses, doctors, and other hospital staff to family members, friends, or privately-employed caregivers. In the current state of literature, there is inadequate data examining caregiver burden when traditional surgical procedures are shifted to an outpatient setting, therefore, a comprehensive study is required to understand the various dimensions of caregiver burden. Therefore, our research question is "what are the most important factors that contribute to the burden of care for caregivers of patients undergoing outpatient surgical procedures traditionally performed as inpatients?" This prospective cohort study examines how the various dimensions of caregiver burden impact caregivers at different time points throughout the care giving experience. These dimensions include factors such as the intensity of dependence on the caregiver, duration of care, caregiver specific factors (e.g., the health literacy of the caregiver), and care giving dimensions (e.g., physical, emotional, social and financial burdens). Through gaining an understanding of how the various dimensions of caregiver burden impact caregivers in the outpatient settings, meaningful improvements can be made in the future and ultimately improve the quality of life of the caregiver during the time of care.

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

Inclusion Criteria (Patient): * Undergoing ambulatory total knee or total hip arthroplasty * Patient is able to consent for self Inclusion Criteria (Caregiver): * English speaking, or willing to use an interpreter * Over the age of 18 years * Primarily responsible for providing care to the patient undergoing ambulatory total knee or total hip arthroplasty Exclusion Criteria (Patient and Caregiver): * Refusal or unable to provide informed consent * The patient is a resident in a nursing home or is already receiving daily professional care for most ADLs * Unable to complete data collection tools or take part in telephone interviews due to cognitive or physical impairment Withdrawal Criteria After Enrollment * Patient or Caregiver refusal to participate or continue with the study at any point * Cancellation of surgery

Outcomes

Primary Outcomes

Care-giver experience assessment with homegrown quantitative questionnaires

To gain an understanding of the various factors contributing to the burden of care experienced in the post-operative setting among our caregivers caring for patients undergoing TKA or THA within our ambulatory model. (e.g., intensity of dependence, duration of care, health literacy, physical well-being, emotional well-being, social well-being, and financial well-being) On a scale of 5-Point Likert Scale from Strongly Disagree to Strongly Agree

Time frame: before surgery up to discharge, assessed up to 1 month

Secondary Outcomes

Intensity of patient dependence on the caregiver

Using the Katz Index of Independence in Activities of Daily Living

Time frame: at 48 hours, 1 week, 2 weeks, and 1 month post-operatively

Time expected to care for the patient

This section will ask caregivers about the number of hours they spend/expect to spend performing caregiving activities.

Time frame: at 48 hours, 1 week, 2 weeks, and 1 month post-operatively

Number of people the caregiving responsibilities have been shared with

This section will ask caregivers questions focusing on their health literacy, defined as "the ability to obtain, read, understand and use healthcare information". Caregivers will be asked how prepared/confident they feel performing the necessary medical caregiving tasks, and if they have sought out additional medical information from healthcare professionals, or online resources to help assist in a caregiving task. Finally, caregivers will be asked to identify if they have shared the caregiving responsibilities with another person throughout the caregiving experience

Time frame: at 48 hours, 1 week, 2 weeks, and 1 month post-operatively

Caregivers' preparedness

Time frame: at 48 hours, 1 week, 2 weeks, and 1 month post-operatively

Caregivers' reliance on additional medical information to help assist in care-giving

Time frame: at 48 hours, 1 week, 2 weeks, and 1 month post-operatively

Caregivers' perceptions on the physical demands of caregiving

This section will ask caregivers questions regarding the impact of caregiving on their physical well-being. Caregivers will be asked pre-operatively if they expect caring for the patient will be physically demanding, and post-operatively if caring for the patient has been physically demanding. As well, caregivers will be asked if preparing for/caring for the patient has disrupted their sleep