Health Services Research Commons^™

Understanding The Experiences Of African American Caregivers Of Loved Ones With Dementia, Paula R. Madison

Seton Hall University Dissertations and Theses (ETDs)

Background: Dementia is a public health problem that is estimated to triple by 2050.Globally, dementia is the seventh leading cause of death among all diseases and one of the major causes of disability and dependency among older people. The direct medical costs and indirect social and economic costs of dementia are burdensome to society, and by 2030 it is projected to cost more than $2.8 TRILLION dollars worldwide. African Americans are two to four times more likely to be diagnosed with dementia than White Americans; and more likely to rely on informal care from family and friends. African …

Resource Utilization Among Informal Caregiver Of Lung Cancer Patients Undergoing Treatment, Charlotte T. Lee, Clarelle L. Gonsalves, Jenny Gao-Kang, Wyatt G. Pickrell, Ruth F. Barker

Patient Experience Journal

The objective of this study is to explore patient and caregiver factors that shape the use of available resources to support caregiving for lung cancer patients undergoing treatment. A mixed-method study was conducted at one regional cancer centre within the Province of Ontario, Canada, using concurrent triangulation design. Adult patients with lung cancer (n=46) and their caregivers (n=42) (37 patient-caregiver dyads) were invited to complete a one-time study survey. Informal caregivers (n=20) also participated in a one-time semi-structured interview. Descriptive statistics and Pearson’s correlation were used to examine patterns of resource utilization and associations among study variables. Content analysis was …

Understanding The Mental And Emotional Impacts Of Being A Caregiver Of Socially Isolated Residents During The Covid-19 Pandemic, Chloe Kerrick

Mahurin Honors College Capstone Experience/Thesis Projects

The mental health and emotional wellbeing of individuals has declined in many ways over the course of the COVID-19 pandemic. Some groups have seen more drastic changes in their mental health and emotional wellbeing, especially those working in healthcare. While nearly all healthcare facility workers have experienced an increased burden brought about by the pandemic, long-term care facility workers have been tasked with caring for clients that, for periods of time, experienced complete social isolation. This project will attempt to answer the question of how caring for a group of socially isolated residents over an extended period has affected the …

The Association Between Ethnicity And Caregiver Health, Adetola Aboyeji

Electronic Thesis and Dissertation Repository

Background: Existing research shows that caregiving is associated with several adverse health outcomes. Despite the growing number of caregivers in Canada, little research has been conducted on caregivers' potential unique experiences and outcomes based on their ethnicity. The main objective of this study was to investigate whether ethnicity was associated with a caregiver’s health.

Methods: To address these research gaps, we used data from the 2012 Canadian General Social Survey (GSS) Caregiving and Care Receiving. Focusing on caregivers (n=9,552), we examined the association using three measures of health – self-reported overall health, self-reported mental health, and the Health Utility Index3 …

The Lived Experiences Of Developmental Disability Caregivers And Service Providers In Ontario, Tetyana Ali

Theses and Dissertations (Comprehensive)

Providing care for children with developmental disabilities (CwDD) is complex and is a life-long journey. Caregivers (CGs) of CwDD experience higher levels of stress, declining mental and physical health, feelings of isolation, diminished financial outcomes, and an overall lower quality of life. Additionally, they often face marginalization and numerous barriers when trying to access funding and supports. This study explored the experiences of CGs of CwDD in the context of Ontario and included the perspectives of CGs and service providers (SPs) to investigate the role the government played in CGs ability to provide adequate care.

Twenty participants were recruited through …

Paying It Forward: A Cancer Survivor And His Wife Share Their Reflections And Recommendations As A Patient And Caregiver, Justin Sandler

Patient Experience Journal

I grew up in the north suburbs of Chicago and had a relatively normal childhood but not necessarily an easy one. Shortly after graduating from Indiana University, I moved out west and have been working in the entertainment industry ever since. My life has been a beautiful and interesting adventure with twists and turns I could have never predicted.

In 2016 it seemed like everything was really coming together. I had been happily married to my wife and business partner Mary Lou Sandler since 2011, and we had been growing our photography/film production studio for as many years. I was …

Factors Influencing Family Burden In Pediatric Hematology/Oncology Encounters, Hannah R. Abrams, Hayden S. Leeds, Heidi V. Russell, Melody B. Hellsten

Journal of Patient-Centered Research and Reviews

Purpose: Caring for a child with cancer or hematologic disease places unique stress on a family unit. Families’ subjective experience of this care-related burden mediates the relationship between cost and health-related outcomes. While financial costs are well described for families of pediatric hematology/oncology patients, it is unclear how cost and other factors each contribute to families’ overall experience of care-related burden. This study identifies and groups the challenges that families report and describes their association with overall reported burden.

Methods: This mixed-methods analysis of a cross-sectional single-center study was conducted via structured, self-administered questionnaire provided to inpatient and outpatient caregivers …

When One Is Sick And Two Need Help: Caregivers’ Perspectives On The Negative Consequences Of Caring, Ilja Ormel, Susan Law, Courtney Abbott, Mark Yaffe, Marc Saint-Cyr, Kerry Kuluski, Debbie Josephson, Ann C. Macaulay

Patient Experience Journal

Informal or family caregivers contribute significantly to individual care, and to the Canadian healthcare system, yet receive limited support from governments, institutions, and healthcare professionals in recognition of their role, or in response to their health and social care needs – often due to the negative consequences of caregiving. Learning about the diversity of others’ experiences can positively influence personal decision-making, reduce feelings of isolation, as well as promote adjustment to a personal situation. For caregivers, however, few resources exist that provide reliable information on others’ experiences. We collected the narratives of caregivers’ experiences of caring for someone with a …