Social and Behavioral Sciences Commons^™

The Hidden Struggle: Challenges Older Women Face In Nevada, Annie Vong

Student Research

In 2020, almost one in five Nevadans was over the age of 65.[1] However, within this age group, women outnumber men due to longer life expectancies[2] and migration patterns. Women over 65 years of age make up an estimated 18.1% of the female population in Nevada.[3] Of the male population in Nevada, 15.1% are over 65 years of age.[4] Older women are less likely to be married, are less likely to have completed a bachelor’s degree, are more likely to drop out of the labor force, and are more likely to be living in poverty in …

Using The Motivated Information Management Theory And The Social Support Theory To Understand Caregiver Perspectives Of Currently Available Health Communication Regarding Dementia: A Qualitative Study, Sara J. Alig

Doctoral Dissertations and Projects

Dementia brings a cascade of changes into the life of not only the person facing it, but also the lives of the supporting family and caregivers. Dementia manifests with a gradual decline, or in some cases, a variably progressive decline in cognitive abilities. This decline requires the individual to rely more and more on caregivers. Caregiving necessitates the giving of oneself for another’s sake and oftentimes results in negative physical and social-emotional side effects. To navigate through the changes that are happening to their loved ones, as well as to themselves, caregivers need educational and social support. The purpose of …

Paying Caregivers More Could Boost Nebraska’S Economy − New Research, Susan Reay, Ernest Goss

Social Work Faculty Publications

Paid caregivers foster independence and improve quality of life for people with all kinds of disabilities, many of whom need help getting dressed, preparing meals, showering and dealing with other activities of daily living.

Therapeutic Use Of Music For Geriatric Dementia Patients, Katelynn E. Roscioli

Honors Program Projects

Dementia impacts millions of individuals and their families worldwide, yet many caregivers remain untrained, unpaid, and unable to maintain their own health while caring for their patients. Despite the need for support, limited resources exist to aid these caregivers in combatting this progressive, debilitating disease. One possibility lies in practices rooted in music therapy, which have been shown to restore memory retention, personhood, and quality of life in dementia patients. However, individuals outside of music therapists, especially those with limited musical backgrounds, may not consider implementing music therapy within their care plan. To make this approach more accessible, a website …

Therapeutic Use Of Music For Geriatric Dementia Patients, Katelynn Roscioli

Scholar Week 2016 - present

Dementia impacts millions of individuals and their families worldwide, yet many caregivers remain untrained, unpaid, and unable to maintain their own health while caring for their patients. Despite the need for support, limited resources exist to aid these caregivers in combatting this progressive, debilitating disease. One possibility lies in practices rooted in music therapy, which have been shown to restore memory retention, personhood, and quality of life in dementia patients. However, individuals outside of music therapists, especially those with limited musical backgrounds, may not consider implementing music therapy within their care plan. To make this approach more accessible, a website …

Pain Limits Family Caregivers’ Daily Activities, Shelbie G. Turner, Karl A. Pillemer, Jamie Robinson, M. Cary Reid

Population Health Research Brief Series

Family caregivers are the main providers of home care to older adults, especially as the prevalence of Alzheimer’s disease and related dementia rises. Caregiving can take a toll on caregivers’ physical and mental health, which impacts both their own well-being and their care recipients’ health outcomes. This brief summarizes findings from a study that used data from the 2017 National Study on Caregiving (NSOC) to estimate the prevalence of arthritis and activity-limiting pain among 1,930 family caregivers to older adults. Over half of all caregivers reported bothersome pain in the previous month, 24% of whom had pain that limited their …

Reimagining A Caregiver-Friendly Society, Jodi L. Southerland

Journal of Appalachian Health

Demographic aging is accelerating in the Appalachian Region, resulting in a growing proportion of caregivers living in areas that lack services to support their needs. Strategies are urgently needed in Appalachia to address deficiencies in the region’s long-term supports and services for older adults and their caregivers. Strengthening equitable access to care and community supports for family caregivers is a policy priority for state and community leaders in Appalachia.

"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 …

Circumventing Ableism: A Grounded Theory Study Exploring Caregiver Strategies To Promote A Positive Identity, June Furr

All Dissertations

This qualitative research study explores how caregivers and persons with disabilities navigate the rhetoric of disability and caregiving through the interviews of fifteen caregivers and fifteen persons with disabilities using the lens of grounded theory and Burke’s (1952) dramatistic pentad. Significant findings describe how focused disability description can circumvent ableism when rhetorical resources that assist caregivers and persons with disabilities to navigate the rhetoric in disability descriptions are provided. Disability description theory includes the three stages that define, collaborate and revise, and practice and apply a disability description. This qualitative research offers an introduction into the phenomenon of …

Locus Of Control, Mindfulness, And Perceived Caregiver Burden In Informal Caregivers Of People With Dementia, Tiffany Marinos-Sterge

Walden Dissertations and Doctoral Studies

AbstractAdult informal caregivers play an essential role in the care of people with dementia living in the community. Adult informal caregivers may experience a host of negative psychological, emotional, and physical effects because of their roles as caregivers. The purpose of this quantitative correlational study was to investigate the influence of locus of control and mindfulness on the perceived caregiver burden experienced by adult informal caregivers of people with dementia, controlling for relevant sociodemographic characteristics. Social determination theory and social learning theory provided the theoretical foundation for this study. Variables were measured using the Caregiver Burden Inventory, Mindfulness Attention Awareness …

Locus Of Control, Mindfulness, And Perceived Caregiver Burden In Informal Caregivers Of People With Dementia, Tiffany Marinos-Sterge

Walden Dissertations and Doctoral Studies

AbstractAdult informal caregivers play an essential role in the care of people with dementia living in the community. Adult informal caregivers may experience a host of negative psychological, emotional, and physical effects because of their roles as caregivers. The purpose of this quantitative correlational study was to investigate the influence of locus of control and mindfulness on the perceived caregiver burden experienced by adult informal caregivers of people with dementia, controlling for relevant sociodemographic characteristics. Social determination theory and social learning theory provided the theoretical foundation for this study. Variables were measured using the Caregiver Burden Inventory, Mindfulness Attention Awareness …

Developing A Lay Ministry Of Caregiving Skills To Parents And Families Who Grieve The Death Of A Child At Zion Hill Baptist Church, Cherryville, N.C., Roger Fuller

Doctor of Ministry Projects

This project aims to educate those who minister to people who may experience the difficult misfortune of the grief and loss of a child. The concentration and intent of this work are to cultivate a ministry of caregiving skills for the members at Zion Hill Baptist Church of Cherryville, North Carolina. This caring ministry of the church will serve all who grieve, but the general focus of this project is to offer specialized care in aiding those who grieve the death of a child. This training is of great necessity because most church members, having not experienced losing a child, …

Health Behaviors As Mediators Of Caregiver Physical Health, Michaela Clark

Graduate Theses, Dissertations, and Problem Reports

Informal caregivers provide the bulk of care to older adults in the United States (Ali et al., 2021). Informal caregivers include family, friends, and neighbors, many of whom do not have any formal training for this role. There are costs associated with taking on a caregiving responsibility, such as scheduling appointments, helping with medications, household tasks, and even financial support (Rha et al., 2015). Many of these informal caregivers lack the coping skills necessary to manage the challenges associated with caregiving (Xu et al., 2021). Many also take on this role despite the personal costs on one’s own health, time, …

Addressing Death Distress In Caregivers Of Patients With Malignant Glioma, Kelcie D. Willis

Theses and Dissertations

The field of psychosocial oncology seeks to improve the quality of life of patients and families affected by cancer. This task becomes increasingly important when there are limited, non-curative treatment options, a high probability of recurrence, and rapid functional decline, such as in the case of a malignant glioma (MG). Indeed, the diagnosis of a MG is associated with negative sequalae that often translates to higher caregiver burden. Caregivers—who must manage the functional decline of the patient, changes within the family, and a complicated medical system—often feel overwhelmed, isolated, and ill-equipped to handle these myriad responsibilities. While they also report …

Message Convergence In Information Seeking And Decision Making Among Adult Children Regarding Their Parent's Diagnosis, Collyn Leggett

Master's Theses

Adult children have a unique role in caregiving and decision-making for a parent diagnosed with a life-threatening illness or condition. In this qualitative study, 15 individuals participated in one-on-one interviews to share their experience seeking information for their parent’s life-threatening diagnosis. This study utilized deductive and inductive coding approaches through axial coding, and two coders analyzed the data through a lens of message convergence framework and uncertainty management. The results show participants engage in information seeking from personal connections to the medical field to retrieve additional information from a more familiar, trusted source. The participants managed uncertainty retrospectively by reassessing …

How Has Grandparenthood Changed In Rural China?, Merril D. Silverstein

Population Health Research Brief Series

China’s rapid modernization and development have led to changes across Chinese society, including within the family. China is experiencing declining birth rates, meaning that fewer older adults are becoming grandparents. At the same time, there has been growing demand for grandparents to serve as caregivers for their grandchildren. This data slice examines the changes in grandparenting in rural China and calls for policies that decrease caregiver burnout, stress, and associated poor health outcomes.

Gendered Impact Of Caregiving Responsibilities On Tenure Track Faculty Parents’ Professional Lives, Amy C. Moors, Abigail J. Stewart, Janet E. Malley

Psychology Faculty Articles and Research

Navigating a career while raising a family can be challenging, especially for women in academia. In this study, we examine the ways in which professional life interruptions due to child caregiving (e.g., opportunities not offered, professional travel curtailed) affect pre- and post-tenure faculty members’ career satisfaction and retention. We also examine whether sharing caregiving responsibilities with a partner affected faculty members’ (particularly women’s) career outcomes. In a sample of 753 tenure track faculty parents employed at a large research-intensive university, results showed that as the number of professional life interruptions due to caregiving increased, faculty members experienced less career satisfaction …

Covid-19 Pandemic Impact Report At The University Of New Mexico, Lisa A. Marchiondo, Shannon Sanchez-Youngman, Teagan Mullins, Naila V. Decruz-Dixon, Melanie E. Moses, Julia Fulghum

ADVANCE Reports

This report outlines four overarching issues that the COVID-19 pandemic raised or amplified for faculty, based on a survey of full-time faculty on the main campus of the University of New Mexico in Spring 2022. Some of the issues identified existed before the pandemic, which further exacerbated challenges and inequities. Results based on faculty gender, race/ethnicity, and job title are provided.

The report contains multiple recommendations for each of the four core issues that will assist individual faculty and improve campus climate and culture. Recommendations are often applicable to multiple issues, so we provide an appendix that cross-lists recommendations between …

“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 …

An Interpretative Phenomenological Analysis Of The Lived Experience Of Parental Caregivers For Children With Severe Epidermolysis Bullosa, Michael J. Valentine

Theses and Dissertations

Providing care to child with a chronic, rare diseases has been identified as a major life stressor with a myriad of negative physical and mental health consequences. These stresses have previously been found to create burden that may impair caregiving efforts and increase the risk of mortality for both the caregiver and affected child. Many rare diseases affect children. It is not known how caregiver burden and the source of stress varies by disease. Qualitative methods have been used to understand caregiver experience with the rare disease, epidermolysis bullosa (EB), but no such studies have occurred in the United States. …

A Look Towards The Future Of Eldercare: Lessons Learned From Social Care Models In Japan, Caroline M. Steil

Honors Theses

The rapidly accelerating trend of population aging is redefining the state of eldercare globally, as every country is currently or will soon face a gap in the excess demand for care versus the scarce supply of caregivers, both formal and informal. Specifically, there is a decrease in the number of elders seeking care through a family member as well as less caregivers in institutions to provide care for elders. Japan is at the vanguard of this caregiving gap, and thus provides key lessons, particularly from two innovative models of eldercare: Ibasho, a grass-roots, non-profit organization, and Japan's Long-Term Care Insurance …

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 …

Impact Of A Dyadic Intervention On Family Supporter Involvement In Helping Adults Manage Type 2 Diabetes, Margaret F. Zupa, Aaron Lee, John D. Piette, Ranak Trivedi, Ada Youk, Michele Heisler, Ann Marie Rosland

Faculty and Student Publications

Background: Family support for adults’ diabetes care is associated with improved self-management and outcomes, but healthcare providers lack structured ways to engage those supporters. Objective: Assess the impact of a patient-supporter diabetes management intervention on supporters’ engagement in patients’ diabetes care, support techniques, and caregiving experience. Design: Multivariate regression models examined between-group differences in support-related measures observed as part of a larger trial randomizing participants to a dyadic intervention versus usual care. Participants: A total of 239 adults with type 2 diabetes and either A1c >8% or systolic blood pressure >160mmHg enrolled with a family supporter. Intervention: Health coaches provided …

An Intergenerational Playgroup In An Australian Residential Aged-Care Setting: A Qualitative Case Study, Gabrielle B. Rosa Hernandez, Carolyn M. Murray, Mandy Stanley

Research outputs 2014 to 2021

Intergenerational programs are emerging within the aged-care context as they provide a unique opportunity for older adults living with or without cognitive impairments to connect with children. One type of intergenerational program is an ‘intergenerational playgroup’ which creates opportunities for children to develop their skills, parents to create a local peer support network and provides older adults at risk of isolation with vital community interaction. The objective of this research was to evaluate an intergenerational playgroup taking place weekly within a residential aged-care setting. A qualitative case study research design was used to perform five observation sessions and semi-structured in-depth …

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 …

An Intersectional Perspective On The Role Of Workplace Policy Among Employed Female Caregivers During The Coronavirus Pandemic, Jessica King Mclaughlin

Electronic Theses and Dissertations

Providing care for an older adult while working can be challenging, often leading to caregiver burden. The socioenvironmental context of the coronavirus pandemic creates additional complications for working caregivers. Women, who are the majority of informal caregivers, face unique stressors in the workplace (McKinsey & Company, 2019; Carnevale et al., 2018). Prior to and during the coronavirus pandemic, workplace policies have offered the potential of support, yet more information is needed on how working female informal caregivers of older adults of diverse identities receive, interpret, and experience these policies amidst the context of the pandemic. This study uses a phenomenological …

Care Infrastructure Accessibility And The Gender Wage Gap – A Way To Improve Women’S Ability To Equitably Engage In The Paid Labor Market?, Julia Schinnenburg

Electronic Theses and Dissertations

World-wide, women are less integrated into the labor force than men and if they are, they earn considerably less on average. This unequal treatment of women results in negative consequences for all members of society, as it harms women’s financial realities and also affects women’s care receivers due to a lack of resources that women can spend on their care giving. The research presented analyses how much the institution of better accessible care infrastructure could improve women’s ability to work for pay and decrease their daily workloads. The extent to which improved care infrastructure accessibility affects women’s lives is determined …

Love And Learn: Creating Space For Authentic Caring In Family Child Care, Katherine Kelly Hart Meehan

Antioch University Dissertations & Theses

Children benefit from engagement in early education and care (ECE) programs that support their learning and development while also providing a point of connection to critical resources for their families. For children from economically disadvantaged families, the lack of access to high-quality ECE results in a persistent achievement and opportunity gap (García & Weiss, 2015). A significant portion of ECE occurs in home-based early learning environments, also known as family child care (FCC) programs, which play a critical role in supporting children from low-income and immigrant families (Layzer et al., 2007; Porter et al., 2010). Unfortunately, this sector of ECE …

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 …