Social and Behavioral Sciences Commons^™

"I Stayed There The Whole Night": Exploring Caregivers' Experiences With The Healthcare System When Caring For A Parent At The End Of Life, Lillian Mehran

Dissertations and Theses

Background: In the United States, there are nearly 53 million individuals serving as caregivers to a loved one. Half of all caregivers are caring for a parent or parent-in-law, and 79% of caregivers are caring for a person aged 50 or older. In New York State, there are an estimated 4.1 million caregivers who collectively provide over 2.6 billion hours of unpaid care, with those caring for a person at the end of life providing twice as many hours of caregiving per week compared to other caregivers. The number of individuals requiring caregiving is expected to increase as a significant …

“We Live On An Island:” Perspectives On Rural Family Caregiving For Adults With Alzheimer’S Disease And Related Dementias In The United States, Heather J. Williamson, Andria B. Begay, Dorothy J. Dunn, Rachel Bacon, Mark Remiker, Yolanda E. Garcia, Michael J. Mccarthy, Julie A. Baldwin

The Qualitative Report

As the United States’ aging population grows, there will be increased prevalence of individuals living with Alzheimer’s Disease and related dementias (ADRD), who largely rely on the support of their family caregivers. Family caregivers residing in rural areas face additional challenges with managing caregiving responsibilities and navigating support services. The purpose of this multilevel phenomenological qualitative study was to explore the assets, unique needs, and resources of rural-residing ADRD caregivers from the caregiver, provider, and policy influencers’ perspectives. The study took place between 2019 through 2021 in northern Arizona, a largely rural and geographically vast area home to caregivers from …

African-American Lay Pastoral Care Facilitators’ Perspectives On Dementia Caregiver Education And Training, Nik M. Lampe, Nidhi Desai, Tomeka Norton-Brown, Alexandra C. H. Nowakowski, Robert L. Glueckauf

The Qualitative Report

The African-American Alzheimer’s Caregiver Training and Support Project 2 (ACTS 2) is a faith-integrated, skills-training and support program for distressed African American family caregivers of persons living with dementia across Florida. Caregivers participate in a 12-week, telephone-based, skills-building and support program led by faith community workers (i.e., lay pastoral care facilitators) who provide volunteer services to their denominations. In this case study, we examined facilitators’ perspectives and recommendations for supplementary audiovisual and written training materials to optimize group process and goal-setting skills. Utilizing a qualitative approach, we explored facilitators’ needs, experiences in using current training materials, and recommendations for supplementary …

Experiences Of Rural Female Caregivers Of Loved Ones Diagnosed With Chronic Pain And Mental Health Care, Anne Banner Hatfield

Walden Dissertations and Doctoral Studies

AbstractThe complex diagnosis of chronic pain can include both physiological and psychological symptoms resulting in a need for caregivers to assist their loved ones and become involved in their mental health care treatment. As the aging population and the number of individuals diagnosed with chronic pain increases, the number of caregivers who assist them also increases. Critical to addressing the psychological symptoms of chronic pain is knowing how caregivers experience their involvement in mental health treatment. This research addressed the need for an understanding of caregivers’ experiences of caregiving and involvement with health care providers of mental health treatment for …

The Caregiver’S Experience Of Post-Treatment Lyme Disease Syndrome, Jordyn Deschene

Antioch University Dissertations & Theses

As the rate of Lyme disease diagnoses increases in the United States, it can be assumed that the frequency at which post-treatment Lyme disease syndrome (PTLDS) is diagnosed will also increase. While research has been published on the experience of caregivers of other chronic illnesses, no studies have examined the experience of the PTLDS caregiver. This quantitative study sought to discover the most significant burdens, mental health status (levels of anxiety and depression), and level of invalidation experienced by the PTLDS caregiver. Thirty individual participants took part in this study. This study found that mental burden is a significant area …

Intersectionality, Relational Positionality, And The Lived Experiences Of Inequality: Contextualizing Intergenerational Opioid Use And The Constrained Choices Of Indigenous, Latina, And White Women Caregivers In Rural New Mexico, Carmela M. Roybal

Sociology ETDs

Opioid addiction is a serious and persistent global health issue. The federal Centers for Disease Control and Prevention (CDC) reported that between 1999 and 2016, more than 630,000 people in the United States died of an overdose of a prescription opioid or illicit drug (CDC 2018). Extant research has suggested that for nearly a century, New Mexico has experienced some of the highest rates of prescription and illicit opioid death in the nation (Goldstein and Herrera, 1995; Landon, 2003; Shah et al., 2008). I examined intergenerational opioid dependence through the lived experience of women caregivers of opioid-addicted family members. Data …

Latina Daughters And Their Caregiving Roles, Denise A. Longoria, Nelda M. Rodriguez, John M. Gonzalez, Romeo Escobar

School of Social Work Faculty Publications and Presentations

Responsibilities and cultural expectations can be somewhat different for Latino males and females. In general, males are expected to be more independent and dominant while females are expected to be more nurturing [1, 2]. Similar to other populations, caregiving for elderly relatives has traditionally been a role adopted by women in Latino cultures [3]. Furthermore, first-born or oldest Latinas are sometimes expected to take on the role of caregiver with younger siblings and/or aging parents [4]. McDermott and Mendez-Luck [5] found that this caregiving role was often cultivated at an early age through a continuous, formal and informal socialization process …

On Eagle’S Wings: A Caregiver’S Story, Heather J. Carlson

Counseling and Family Therapy Scholarship Review

Increased attention is being focused on the Sandwich Generation, a rapidly growing subset of the adult population usually in their 40’s to 60’s who are the primary caregiver for children under the age of 18, as well an aging parent(s). The pull between the two generations is one of the greatest struggles facing mid-life adults ‘sandwiched’ between caring for their developing children and their aging parents. The delicacies of balancing logistical and emotional resources among the generations can be overwhelming for sandwich generation caregivers. The resulting stress on caregivers is related to higher absenteeism from work, levels of depression, …

A Multi-Component Education, Skill, And Resource Evidence-Based Practice Intervention For The Alzheimer’S Caregiver, Cheryl Garmon

DNP Final Reports

Abstract

Dementia caregiving is expensive, stressful, and consumes all facets of the caregiver’s (CGs) life. The purpose of this project is to introduce the evidence-based practice (EBP) interventions most helpful in decreasing stress and burden in those who are in-home caregivers for Alzheimer’s disease and related dementias (ADRD) individuals.

The three primary intervention domains of the EBP studies that results in a positive impact are; providing education about the terminal course of the disease, introducing communication and caregiving skills, and furnishing resource and social network information.

The methodology included a convenient and voluntary population of CGs who sought service at …

Patient- And Family-Identified Problems Of Traumatic Brain Injury: Value And Utility Of A Target Outcome Approach To Identifying The Worst Problems, Laraine Winter, Helene J. Moriarty, Catherine V. Piersol, Tracey Vause-Earland, Keith Robinson, Brian Newhart

Journal of Patient-Centered Research and Reviews

Purpose

This study aimed to identify the sequelae of traumatic brain injury (TBI) that are most troubling to veterans with TBI and their families and identify veteran-family differences in content and ranking. Instead of standardized measures of symptom frequency or severity, which may be insensitive to change or intervention effects, we used a target outcome measure for veterans with TBI and their key family members, which elicited open-ended reports concerning the three most serious TBI-related problems. This was followed by Likert-scaled ratings of difficulty in managing the problem.

Methods

In this cross-sectional study, interviews were conducted in veterans’ homes. Participants …

Investigating The Theory Of Ambiguous Loss: The Role Of Ambiguity Tolerance In Pre-Death Grief For Caregivers Of Individuals With Dementia, Megan Kale-Cheever

Graduate Theses and Dissertations

This thesis sought to investigate the relationship between ambiguity tolerance and caregiver grief within the framework of ambiguous loss theory. Thirty-one family caregivers completed a quantitative survey comprising two pre-existing scales and several demographic questions designed to assess level of ambiguity tolerance, level of grief, caregiver age and gender, type of relationship to the care recipient, living situation, length of caregiving career, level of Social support and frequency of difficult behaviors. Quantitative data analysis revealed that while no relationship existed between total ambiguity tolerance and total caregiver grief, a modest, inverse relationship exists between tolerance toward general-type ambiguity and burden, …

Depression And Spiritual Predictors Of Wellness In Family Caregivers Of Individuals With Alzheimer’S Disease, Christine Green

Doctor of Psychology (PsyD)

This study investigated the role of spirituality in family caregivers of individuals with Alzheimer’s disease as a means of lessening the development of depressive symptomology arising through caregiver burden. For this study, there were 41 caregiver participants taking care of a family member with Alzheimer’s disease. The population was obtained through various divisions of the Alzheimer’s Association of the United States of America. Participants completed a basic demographic survey, the General Well-Being Schedule, the Patient Health Questionnaire- 9, and the Spiritual Experience Index. Two groups, religious and non-religious, had their mental health functioning compared. Results from the 41 surveys suggest …

Research Brief: "Caregiving Experiences And Health Conditions Of Women Veteran And Non-Veteran Caregivers", Institute For Veterans And Military Families At Syracuse University

Institute for Veterans and Military Families

This brief is a summary of women veteran caregivers experiencing health concerns, including sleeplessness, poor mental health, and some chronic conditions.

Impact Of Role Discrepancies On Caregiver Burden Among Spouses, Marie Savundranayagam, R. Montgomery

Marie Y Savundranayagam

Using caregiver identity theory, the authors investigated whether role discrepancies mediated the relationships between illness-related stressors (activities of daily living [ADLs] limitations and problem behaviors) and burden (stress, relationship, and objective burden) for spouse caregivers. Participants completed measures of identity standards for spouse and caregiver roles and behaviors, burden, assistance with ADLs, and problem behaviors. Structural equation modeling analyses revealed that role discrepancies completely mediated the relationships between ADLs and stress and relationship burden. Although role discrepancies mediated the relationships between problem behaviors and all forms of burden, there were direct relationships between problem behaviors and burden. Finally, participants who …