Rebecca Utz (Dec 1, 2022 16:36 MST) Family Caregiver Support: An Unmet Need for Family Caregivers by Christine Moua A proposal submitted in partial fulfillment of the requirements for the degree of MASTER OF EDUCATION IN FAMILY LIFE EDUCATION WEBER STATE UNIVERSITY Ogden, Utah December 12, 2022 Approved Daniel Hubler (Dec 1, 2022 12:33 MST) Daniel Hubler, Ph.D. Stephanie Speicher, Ph.D. 2 Table of Contents INTRODUCTION......................................................................................................................... 4 NATURE OF THE PROBLEM.................................................................................................... 5 Literature Review.............................................................................................................. 9 Caregiver’s Health Trajectories ........................................................................... 10 Caregiver’s Work and Employment Constraints ................................................ 13 Caregiving Burden on Relationships .................................................................. 16 The Current State of Available Resources ......................................................... 17 Summary ........................................................................................................................ 20 PURPOSE .................................................................................................................................. 20 METHOD .................................................................................................................................. 20 Participants .................................................................................................................... 21 Instruments .................................................................................................................... 21 Procedure ...................................................................................................................... 21 Recruitment Methods ....................................................................................... 22 DATA ANALYSIS ................................................................................................................... 22 Results .......................................................................................................................... 22 3 Demographic Data ....................................................................................... 23 Caregiver Situation ...................................................................................... 23 Caregiving Resources .................................................................................. 26 What resources were used? …...................................................................... 26 How did family caregivers get connected to the services? .......................... 27 What services do family caregivers wish they have? ................................... 27 Conclusion of Results ............................................................................................... 31 DISCUSSION ....................................................................................................................... 32 Research Limitation ................................................................................................. 33 Future Research ........................................................................................................ 34 Conclusion ................................................................................................................ 34 REFERENCES ..................................................................................................................... 36 4 Introduction Family caregivers, also known as informal caregivers, are a critical part of the long-term care system with an estimated 53 million unpaid family caregivers in the United States (NAC & AARP, 2020). They take on a vast amount of care responsibilities for older adults and those with medical conditions and disabilities. Though family caregivers may find their roles rewarding, it does not deny the spectrum of challenges they encounter that may lead to an inordinate amount of caregiver burden. Evidence shown in many research reports has indicated that caregiver burden negatively impacts caregivers’ health, relationships, and financial situations (Chou, 2000). Family caregivers are hidden patients themselves and “want more programs to help families care for their loved ones” (Harrington & McInturff, 2021). Family caregivers need support but often do not know where to turn to for help. Formal support is available to care recipients and caregivers; however, they are broad, complex, and disorganized (Schulz & Tompkins, 2010). Access to information is an unmet need for family caregivers (Schulz & Tompkins, 2010). Family caregivers have their own unique care conditions, but so many of their obstacles and stressors are similar. While families provide a vast amount of help and care, who is helping them? I hope to look at what family caregiver’s support needs are and if there are similarities in support needs among diverse caregivers. Specifically, the research will answer the following research questions: 1. What kind of services are family caregivers receiving? 2. How did family caregivers get connected to the services? 3. What services are they not using that they wish they have a connection to? 5 Nature of the Problem Rosalyn Carter stated that “there are only four types of people in the world: (1) those who have been caregivers, (2) those who currently are caregivers, (3) those who will be caregivers, and (4) those who will need caregivers” (Snelling, 2012). Informal caregivers are often family members such as a spouse, partner, child, family member, friend, or neighbor who assist with caring for someone with chronic illnesses or disabling conditions that need assistance with daily tasks on a regular basis (CDC, 2019). The term informal is often used to distinguish unpaid caregivers from paid professional caregivers (Dunbar et al., 2018). For this research, I will be using the term “family” caregiver. Family caregivers are critical to their care recipients and essential to the health care system (Schulz & Tompkins, 2010). They provide social needs, health needs and more to the elderly, young, and those in need of direct aid. According to the 2020 National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP) research report on Caregiving in the United States, there is an estimation of 53 million unpaid family caregivers in the United States and 79 percent of these caregivers are caring for adults ages 50 years and older (NAC & AARP, 2020). Family caregiver numbers continue to increase worldwide, and particularly in the United States; NAC & AARP reported a 7.6 million increase of family caregivers between 2015 to 2020 (NAC & AARP, 2020). “This equates to nearly 42 million adults caring for someone aged 50 or older” (NAC & AARP, 2020, p. 1). This number is only projected to increase as the demand for caregiving rises with the aging population (NAC, 2020). According to the Population Reference Bureau, it is projected that adults ages 65 and older will double between 2018 and 2060 from 52 million to 95 million. The driving force behind this rapid growth can be tracked to the generation born between 1946 and 1964 colloquially known as the 6 baby boomers (Huntsberry-Lett, 2021). As these numbers are projected to increase, it is even more important than ever now to recognize our family caregivers and the financial, emotional, and health support they need to continue in their caregiving role. Depending on the health condition of the care recipient, family caregivers may be required to play multiple roles in order to deliver effective health-related care in the home (Schulz & Tompkins, 2010). Family caregivers provide care, often equivalent to professional nurses such as monitoring acute and chronic condition(s), recognizing early signs of problems, knowing how and when to respond, and other procedures that may be required during care (Zwicker, 2018). Family caregivers are the communicators and coordinators for their care recipients that requires communicating about care decisions, provide support such as companionship and emotional support, discuss with physicians and health care providers about patient status and care needs, coordinate travel arrangements for care recipients to appointments, responsible for housework and shopping, overlook paperwork and financial management, and help and assist with personal care and hygiene (Schulz & Tompkins, 2010). Other responsibilities also require caregivers to coordinate care services for their recipients, negotiate among family members on caregiving roles, identify available resources and eligibility requirements, and have to communicate and coordinate with health professionals and insurance companies (Schulz & Tompkins, 2010). As the care recipient’s health condition worsens, caregiving tasks may include hands-on physical assistance such as dressing, bathing, ambulating, and toileting (Gitlin & Schulz, 2012). Their tasks can accumulate overtime (Gitlin & Schulz, 2012) and the amount of time caregivers spend varies depending on the condition of the individual they are caring for (Gitlin & Schulz, 2012). Depending on the medical condition of the care recipients, it can require even more advance care. 7 Though many family caregivers find the caregiving experience enriching and meaningful in offering support to their loved ones, many family caregivers also feel underprepared and untrained on caregiving tasks. The care that family caregivers provide can be episodic, transitional, long-term, and require responsibilities and tasks that the caregiver may have little knowledge, training, or support for (Gitlin & Schulz, 2012). Another study “Predictive model for the preparedness level of the family caregiver” found that readiness, resilience, and burden are related. Caregivers who are better prepared experience a lighter burden (Gutierrez-Baena & Romero-Grimaldi, 2022). It concluded that the preparedness of caregiving is inversely related to burden and that feelings of burden can decrease the quality of life for the caregiver and additionally are related to depression and uncertainty (Gutierrez-Baena & Romero-Grimaldi, 2022). Although there are training and assistance plans and programs for caregivers, these initiatives do not reach most of the caregiving population (Gutierrez-Baena & Romero-Grimaldi, 2022). In another study by Coleman, Ground, and Maul, found that family caregivers play an important role in executing the patient’s care plan, however, there is little attempt from health care professionals to help strengthen caregiver’s preparation and confidence (Coleman, Ground, & Maul, 2015). Nearly 9 in 10 midlife adults from middle-income families said family caregiving requires more emotional strength, patience, and time than they had expected and is harder than anticipated (Reinhard et al., 2015). The individualized caregiving experience demonstrates the multidimensional challenges that caregivers encounter and the inadequate state of preparedness for these individuals and households. The demands and challenges of the caregiving role can lead to caregiver burnout and other unhealthy levels of caregiver burden, terms often used to describe the physical, psychological, emotional, social and financial stress experienced due to 8 providing care (Bastawrous, 2012). Burnout refers to physical, emotional and mental exhaustion (Cleveland Clinic, n.d.) experienced by individuals in response to chronic stress (Gerain & Zech, 2019) and burden describes the experience of physical, emotional, social and financial problems (O’Neill & Ross, 1991). Role Theory and Leonard I. Pearlin’s Stress Theory has been used as theoretical frameworks in the past to help clarify and explore the diverse domains of burden and how burdens fit into the stress-response process (Bastawrous, 2012). Role theory is also used to understand how the interaction between the various roles of caregiving impacts the caregiving experience of burdens (Bastawrous, 2012). This theory suggests that conflict arises when time and resources are limited and when an individual does not “agree on certain role expectations” (Bastawrous, 2012). The lack of sufficient time and resources for an individual to fulfill their obligations in their roles leads to role overload and conflict. Sometimes caregivers can have a difficult time separating their caregiving role from other roles such as a spouse, lover, child, or friend (Cleveland Clinic, n.d.). Pearlin’s stress model in relation to caregiving burdens suggests that the caregiver’s background and context are the primary stressors. The primary stressors interact with secondary stressors (role strains and intrapsychic factors) that can influence outcome factors such as depression and anxiety (Bastawrous, 2012). Pearlin’s stress model suggests that the interaction between primary and secondary stressors and mediators impacts the outcome of an individual’s well-being. Many family caregivers do not recognize when they are experiencing burnout until they cannot effectively function (Cleveland Clinic, n.d.). As caregivers navigate through their multifaceted roles, their own health may suffer as a result (NAC & AARP, 2020). The 2020 Report on Caregiving revealed that in general family caregivers’ health declined compared to five years ago (NAC, 2020). The stress that is associated with family caregiving can impact the caregiver’s social, emotional, and financial health (Eifert 9 et al., 2015). According to the CDC, caregiving is a public health issue that is affecting the quality of life of millions of individuals (CDC, 2018). Caregiving can affect a caregiver’s ability to work, engage in social interactions and relationships, and maintain their own physical and mental health (CDC, 2018). The Family Caregiver Alliance (FCA) found a consistent trend in studies reporting that family caregivers have higher levels of depressive symptoms and mental health conditions among their peers who are non-caregivers. (FCA, n.d.). In a meta-analysis of differences between caregivers and noncaregivers in psychological health and physical health, the study found large differences between caregivers of dementia recipients and noncaregivers (Pinquart & Sorensen, 2003). Another study cited by the FCA is on the transitions into caregiving transitions and psychological well-being. The study confirms that the transition into caregiving for primary kin such as a child, spouse, or biological parent were associated with an increase in symptoms of depression (Marks, Lambert, & Choi, 2022). “Caregivers are hidden patients themselves, with serious adverse physical and mental health consequences from their physically and emotionally demanding work as caregivers and reduced attention to their own health and health care” (Reinhard, Given, Petlick, 2018). Too often, family caregivers focus on the needs of the person they are caring for, that their own needs go unmet and can lead to an increase in caregiving burden. Literature Review Family caregivers are required to make significant changes in their life that can affect family routines, psychological distress, financial hardship, relationships, and work-related problems (Schulz, 2001). The demands of caregiving can leave someone feeling burdened and distressed. According to Maslow’s Hierarchy of Needs theory, humans have physical and psychosocial needs (i.e. physical, safety and security, love and belonging, self-esteem, self-10 actualization) and when needs go unmet, a person is unable to mature to their fullest potential (ER services, n.d.). Understanding the effects of caregiving is a critical piece to identify the support that family caregivers need. This literature review will provide a more in-depth exploration of the caregiving burden effects on caregivers’ physical and psychological health, their work and financial situations, and relationships. Caregiver’s Health Trajectories Family caregivers of chronically ill family members are at potential risk for caregiver burden that can lead to declined physical and psychological health (Chang & Chii-Jun & Chen, 2010). According to the Family Caregiver Alliance (FCA), evidence shows that even when caregivers are not prepared for their role and receive little-to-no support, they still continue to provide intense care, all the while, “suffering from poor health themselves” (FCA, n.d.). Research through the Blue Cross Blue Shield Association has demonstrated that the continuous uncompensated caregiver role carries significant health impact (BCBSA, 2021). Studies have used family caregiving as a model to study how chronic stress affects health because of all the features of caregiving that are related to chronic stress (Schulz & Sherwood, 2009). Caregiving can create physical and psychological strains over an extended amount of time because of the high levels of unpredictability and controllability experienced (Schulz & Sherwood, 2009). Caregiving can also create secondary stress to work and family relationships and also other life domains (Schulz & Sherwood, 2009). Numerous studies have also provided evidence on the health effects of family caregiving and suggest that the stress experienced during caregiving can have negative mental health and well-being implications (Penning & Wu, 2016). Caregivers are less likely to engage in self-care which results in an increased risk of heart disease, declining health, poorer mental health, and 11 higher mortality rate (FCA, n.d.). In response to caregiver burden effects on caregiver’s health, this section will present burden effects on mental health and wellbeing. Family caregivers reported higher health problems among non-caregivers (Liu & Kim & Zarit, 2015) and increased levels of stress, anxiety, depression, and other mental health effects (FCA, n.d.). It comes with no surprise that the burden caregivers experience can negatively impact their mental health. There is a large difference in depression, stress, and self-efficacy between caregivers and non-caregivers (Gitlin & Schulz, 2012). It is even less surprising at the amount of meta-analysis studies that have found a negative association between caregiving and psychological implications (Bauer & Sousa-Posa, 2015). Research on caregiving burden effects on mental health are dated as far back as 1968. Schulz et al., did a review in 1990 on 33 published articles between 1968 and 1990 that focused on psychiatric morbidity effects of caregiving. Majority of the work suggested that caregivers showed an above-average level of psychiatric symptoms (Bauer & Sousa-Posa, 2015). Another review completed in 1995 concentrating on 41 published papers (Schulz et al., 1995) between 1989 to 1995 on the well-being effects of caregivers for dementia patients concluded that caring for patients with dementia leads to higher levels of depressive symptoms for the caregiver (Bauer & Sousa-Posa, 2015). A review in 2003 completed by Pinquart and Sorensen of 228 studies between 1966 and 2002 focused on the provision effects on caregivers of elder care. The comparisons found that behavioral problems, physical and cognitive impairment, and the amount of time spent on caregiving placed burden on caregivers and increased depressive symptoms (Bauer & Sousa-Posa, 2015). This finding was also supported by Black and Aleida who did a review in 2004 on the associations of behavioral and psychological symptoms of dementia and caregiver burden (Bauer & Sousa-Posa, 2015). In 2007, a review by Cooper et al, found that higher levels of 12 anxiety were associated with dementia care. Caregiving burden effects on mental health is not a new discovery. Its existence has been around for a very long time as shown above through research and it continues to affect family caregivers today. Chronic stress can affect caregivers’ physical psychological health (Schulz & Sherwood, 2009). Depression is one of the most common effects of caregiving (Schulz & Sherwood, 2009). Distress and depression that are due to the caregiving experience can also negatively impact the physical health of caregivers (Schulz & Sherwood, 2009). People with symptoms of depression sometimes do not recognize the symptoms or may have a difficult time admitting they are feeling depressed because of embarrassment, afraid of negative judgment, or feelings of failure. It is important for family caregivers to know that depression, stress, anxiety, and other mental health conditions are all normal responses to their difficult situation and can be a result of constant demands (FCA, n.d.) It is also important that caregivers have knowledge of these symptoms and the types of services available to them when they are experiencing mental health challenges. Caregivers are expected to have a higher risk for health problems compared to nongivers given the critical responsibilities and functions they have to perform that can lead to chronic stress (Vitaliano et al., 2003). Chronic stress and illnesses are associated and may trigger health behaviors such as substance abuse, poor diet, and sedentary behavior (Vitaliano et al., 2003). These risky health behaviors may also contribute to cardiovascular problems, metabolic, or immunologic dysregulation (Vitaliano et al., 2003). They may experience different types of stressors that put a toll on their physical health. Caregiver burden and chronic stress can affect cardiovascular health (CVD) (Bouchard et al., 2019). Stress among female caregivers have been associated with the risk of developing coronary heart disease and increased risk for stroke (Bouchard et al., 2019). Strained caregivers 13 to a spouse or partner are more likely to die from CVD compared to caregivers who report little-to-no strain (Bouchard et al., 2019). Other physiological, behavioral, and emotional factors also contribute poor cardiovascular health among caregivers (Bouchard et al., 2019). The stress experienced by caregivers has also been directly linked to the development of metabolic syndrome and furthermore, it has also been associated with an increase in a caregiver’s cardiovascular reactivity (e.g. blood pressure, heart rate) (Bouchard et al., 2019). Caregivers are important to the health care system but are often invisible patients that “receive inadequate support from health professionals and frequently feel abandoned and unrecognized by the health care system” (Adelman et al., 2014). Caregivers with limited experience can be at a higher risk of becoming overwhelmed and adverse outcomes compared to caregivers with resources, knowledge, and the needed skills for their caregiving and caregivers who are older, from low-income socioeconomic status, and who is chronically ill or disabled are at a higher risk for adverse outcomes (Gitlin & Schulz, 2012). Because caregivers are rarely getting their own health and caregiving needs assessed, overtime, they do not invest time or energy into their own health when compared to non-caregivers, caregivers experience a significant gap in their health quality and health care (Gitlin & Schulz, 2012). Recognizing caregiver’s health risk can provide service support to be able to provide effective responses to enhance the caregiver’s quality of life and address their needs. Caregiver’s Work and Employment Constraints More than half of family caregivers are also working caregivers and often need workplace accommodations. Key findings from the 2021 National Survey of Caregiver Stress in the U.S. Workforce by Rosalynn Carter Institute (RCI) and Public Opinion Strategies reported that 1 in 5 fulltime employees are also family caregivers providing care for a family member or 14 friend on a regular basis with serious illnesses, developmental disorder, or disability (Harrington & McInturff, 2021). Employed family caregivers have reported that their work suffered due to their caring responsibilities and having to take time off or leave early for one or more consecutive days (Harrington & McInturff, 2021). Many caregivers also experience an income loss in order to care for their loved ones. Nearly two in ten family caregivers reported that they had to leave their job and four in ten said they had to go part-time in order to provide care (Harrington & McInturff, 2021). As shown in figure 1, according to the RCI, employed caregivers reported that they frequently or sometimes experience these situations: (Figure 1, Used with permission from the authors – Copyright © 2022 Rosalynn Carter Institute for Caregivers, Inc. All rights reserved. No part of this publication may be reproduced, stored, transmitted, or disseminated in any form or by any means without prior written permission from Rosalynn Carter Institute for Caregivers, Inc.) Surveys have provided a strong indication between caregiving and reduced work for pay (Schulz & Eden, 2016). According to one national survey, it found that 1 in 5 retirees retired earlier than planned due to caring responsibilities of an ill spouse or family member (Schulz & 15 Eden, 2016). According to the 2015 Caregiving in the U.S. survey, 34 percent of caregivers left their job because of the non-flexible work schedule and 39 percent quit or retired early to be able to spend more time with their care recipients (Schulz & Eden, 2016). Caregivers who co-reside with their care recipients were more likely to cut back work hours, take a leave of absence, quit a job, early retirement, and other income-related accommodations (Schulz & Eden, 2016). Employed caregivers of older adults can be subject to discrimination in the workplace due to their caregiving responsibilities (Schulz & Eden, 2016). The term often used is family responsibility discrimination (FRD) or caregiver discrimination which is when a caregiver is discriminated against based on their caregiving responsibilities and being viewed under the assumption that they are not dependable or less productive (Schulz & Eden, 2016). There are currently no federal statutes or regulations that prohibit FDR specifically (Schulz & Eden, 2016). There are laws in some states that protect workers with family responsibilities, but it is limited to responsibilities of childcare (Schulz & Eden, 2016). Caregivers who experience FRD can also experience emotional drainage (Schulz & Eden, 2016). Emotional stress is the biggest challenge for employed family caregivers as they juggle their job and caregiving responsibilities (Harrington & McInturff, 2021). Employed caregivers say the benefits of flexible scheduling, remote work, reduction to part-time, job sharing, and specialized caregiver services are the most helpful. It can be difficult to balance work and caregiving responsibilities, “even under the best of circumstances” (Schulz & Eden, 2016). Having flexible workplaces can help reduce turnover and absenteeism and improve productivity (Schulz & Eden, 2016). Family caregivers who utilize their benefits have lower levels of emotional stress and more positive impact on their emotional and mental health, career, and overall health versus those who do not use or were not offered benefits (Harrington & McInturff, 16 2021). Employed family caregivers say they want more emotional and financial support and greater flexibility from employers to help alleviate the challenges they face. They want employers to be more understanding. Working full-time, along with caring responsibilities for their loved ones can be both financially and emotionally draining (Harrington & McInturff, 2021). Caregiving Burden on Relationships The role of caregiving is not in isolation from an individual’s other roles and responsibilities. It intersects with their personal lives as a spouse or partner, parent, employee, parent, community member and more. The caregiving demands can interfere with other dimensions of a caregiver’s life (Schulz & Eden, 2016). The stress associated with caregiver burden can lead to multiple relationship strains. When caregivers experience burnout, it doesn’t only affect their relationship with the care recipient, but it may also cause them to withdraw from other relationships with their spouse/partner, children, and friends (Jones, n.d.). “Reduced time and energy for maintaining social relationships may occur, resulting in isolation and long-term constriction of social networks” (Schulz & Eden, 2016). As caregivers move into their role, the responsibility of caring for someone can often require lifestyle changes and adjustments that may pose financial burden, interfere with quality time with other relationships, cause frustration/fatigue/resentment towards others, and lead to disagreements (Kruger, 2021). Family relationships can be impacted by the demands of caregiving. According to the Health and Retirement study, researchers found that caregiving affects the whole family psychologically and not just the active caregivers (Amirkhanyan & Wolf, 2006). Caregiving demands can also generate conflict among family members about care decisions. Relationship conflict has been correlated to mental impairment and strain. Frequent 17 conflict can lead caregivers to have greater depression and higher levels of anxiety than non-caregivers (Bevan et.al, 2012). Having a better understanding of the psychological effects on caregivers and their family may help identify interventions opportunities for caregivers (Schulz & Eden, 2016). The Current State of Available Resources Caregiver burnout is common among caregivers as they often sacrifice their self-care and personal demands to ensure they meet the needs of their loved ones. Burnout can be a result of a combination of stress, anxiety, depression, physical exhaustion, social isolation, guilt, resentment, and physical health issues (SALMON, 2021). Stress can harm both the caregiver and their care recipient (Reinhard et al., 2008). This section will address interventions for family caregivers. Interventions are designed to help family caregivers become more confident in their care and to ensure safe and effective care practices. Interventions prevent abuse and neglect, improve caregiver’s knowledge and skills, develop problem-solving skills, properly administer medications and medical equipment, and enhance emotional and coping skills (Reinhard et al., 2008). By strengthening their competence and confidence, it will also promote a more positive response to caregiving and reduce caregiver distress. Research has shown that caregivers who feel more prepared to deliver care experience less burden (Reinhard et al., 2008). Interventions and caregiver support are incredibly important because it reduces potential harm to their loved ones. Without knowledge and the needed skills, they can unintentionally hurt their care recipients that can lead to injury risks or errors in administering medication. Caregivers who are expressing depression are also more likely to engage in behaviors that are neglectful. Neglect has been reported to be one of the most common in caregivers who are experiencing 18 depression or distress. Other abusive behaviors can include screaming, yelling, threatening, physical force, hitting, or withholding food (Reinhard et al., 2008). AARP has created a small-scale landscape guide of resources for family caregivers in Utah to current resources that are available to them. Caregivers may find these resources on their website. There is information about general resources that provide home-delivery meals, in-home assistance, legal services, transportation, long-term care, and adult protective services, and other resources that include information about food pantry locations, legal assistance, tax help, and more. The Utah Department of Health and Age Well are dedicated to providing health resources that provide the community with diseases and conditions information, medical screenings, Medicaid, annual wellness exam, one-on-one counseling for Medicare recipients and their families. Other services that are beneficial to family caregivers include information about available services, assistance in gaining access to services, counseling, support groups, caregiver training, respite care, and supplemental services (ACL, n.d.). These resources can help alleviate caregiver’s worries and in return, help to reduce the burden that family caregivers experience (AARP, n.d.). Services that support family caregivers can help to reduce depression, anxiety, and stress (ACL, n.d.). Caregiving support offers many advantages for caregivers to help reduce burnout and improve a caregiver’s quality of life and caring experience but getting connected to these resources is one of the unmet needs for family caregivers. Caregivers often have to navigate through the complex system by themselves. The caregiving role requires specialized knowledge and skills to their particular situation; however, evidence indicates that many caregivers do not receive adequate preparation (Schulz & Eden, 2016). There are policy initiatives to create stronger partnerships with family caregivers, however, resources necessary for caregivers still fall short (Schulz & Eden, 2016). 19 Understanding the disconnect between service providers and family caregivers can help to identify how to better support family caregivers and delivery care. Summary “Despite the term informal, caregiving is not informal or simple” (Dunbar et al., 2018). The layers of caregiving responsibilities can cause emotional, physical, and financial stress that lead to caregiving burdens affecting many aspects of a caregiver’s life. Unmet needs can negatively affect a caregiver’s wellbeing. Family caregivers are often the problem solvers making decisions in crisis mode with little-to-no guidance leaving them to feel overwhelmed, burnt out, and burdened. Maslow’s Hierarchy of Human Needs can be used to understand the whole caregiver on many different levels and the complexity of their needs. Maslow’s theory is understanding the interconnection between physical and psychological elements needed to survive (Arab, n.d.). Maslow’s hierarchy demonstrates the many levels and complexities to caregiver needs (Arab, n.d.). Caregivers tend to provide the basic needs such as ensuring their loved ones are attending their doctor appointments, have healthy meals, staying hydrated, and help maintain their homes, all the while, forgetting to tend to their own basic needs (Arab, n.d.). Caregivers’ safety and security needs can be challenged when caregivers have to be dismissed from work to care for their loved ones or in addition to their caring responsibility, they also help provide additional financial support to their loved ones. Love and belonging such as friendship, intimacy, family, and love is important and when someone is deprived of these needs, it can lead someone to experience loneliness or depression (Arab, n.d.). Caregivers are often providing physical and emotional support to their care recipients, which can also limit their own participation in regular social activities (Bastawrous, 2012). Caregiving is not easy and sometimes they may hear things 20 or be told things that affect their esteem and doubt their care decisions. It is possible for caregivers to reach self-actualization but they must identify their needs, work on meeting their needs, and build a support system of healthcare individuals, families and friends to help them move forward (Arab, n.d.). Understanding Maslow’s Hierarchy of Needs for caregivers is important in order to better understand what caregivers need and why they may experience burnout and caregiving burden. It is important to acknowledge family caregivers as a whole in order to provide support that is critical to their holistic well-being. “One of the most important things we can do for caregivers is to help them take care of themselves as they so selflessly take care of others” (McDonough, 2021). Purpose Many family members are the key caregivers for their loved ones. Caregivers need support but often do not know where to turn to for help. The goal of this project is to understand what caregivers are receiving from support services, what they are not receiving from support services, and possibly identify if there are themes of unmet needs among caregivers. Research Questions 1. What kind of services are family caregivers receiving? 2. How did family caregivers get connected to the services? 3. What services are they not using that they wish they have a connection to? Method To address the purpose of this project, a qualitative study was conducted by survey with current and former family caregivers. The survey included (a) demographic information about the caregiver, (b) general information about the caregiving situation, (c) goods or services that are used to support caregiving responsibilities, (d) how caregivers are connected to the goods and 21 services, (e) and services that caregivers are currently not using that they wish they have a connection to. Participants Participants must be 18 years of age and older and be a current or former family caregiver. Instruments The instrument used for this study was put into an online survey using Qualtrics. The survey included several questions that were provided by Dr. Debra Scammon at the University of Utah and also other additional questions were added to answer the specific research questions of this study. The survey questions provided by Dr. Scammon were used as a guide during the pilot work “Products and Services Use Among Family Caregivers.” Dr. Scammon has given permission to use the survey questionnaire for this study. The survey measured relationships between the caregiver and care recipients, the long-term illness or disability of the care recipients, caregiver responsibilities, hours spent caring for the person, resources caregivers use to support their caregiving responsibilities, and services the caregiver is currently not utilizing that they wish they had a connection to. Procedure The first step was to identify and create survey questions that measured the data trying to collect. The survey was then created using Qualtrics. Once the survey was created, then it was distributed via email and social media. Finally, the last step was to collect the survey responses and put them into a master spreadsheet for the data to be analyzed. 22 Recruitment Methods. Email and social media were the main source of participant recruitment for the survey. A message explaining the purpose of the survey and the requirements for taking the survey (e.g., at least 18 years of age and must be a current or former family caregiver), along with the survey link was shared. The survey was also distributed to college students at Weber State University in several family studies’ courses with the support of Daniel Hubler, PhD. Data Analysis The survey was administered and gathered over a six-week period and the results were analyzed. The survey gathered a response of 61 respondents. Of the 61 responses, 20 stopped responding to the survey after question 4 of 56 questions, 3 did not identify as a current or former family caregiver caring for someone with chronic illnesses or disabling conditions, and 1 did not meet the age criteria of being 18 years or older. These respondents were removed from the analysis. The remaining 37 respondents were part of this analysis. The data were interpreted to answer: 1. What kind of services are family caregivers receiving? 2. How did family caregivers get connected to the services? 3. What services are they not using that they wish they have a connection to? Results The survey had three sections: (a) demographic data, (b) caregiver situation, (c) caregiving resources. Respondents were given questions that used the Likert scale to measure 23 their caregiving experience and were also given the opportunity to expand on their answers by providing comments in each of the sections. Demographic Data Participants had the option to provide their demographic information. Based on the answers in this section, of the 37 respondents, 9 respondents did not provide their information. Of the 28 respondents who shared, 24 of them were female and 4 were male. 18 respondents are between the ages of 20 years old to 30 years old, 9 are between 40 years old to 50 years old, and 1 respondent was over 60 years old. Ten of the respondents lived in a household of five people or more. 22 respondents reported that they are employed full-time, part-time, or self-employed. Caregiver Situation Based on the survey questions that were asked in this section, we were able to gather information from family caregivers that had diverse caregiving backgrounds. 7 respondents answered that they were caregivers to a child, 9 cared for a parent, 5 cared for a sibling, 2 cared for their spouse or romantic partner, 6 cared for a grandparent, 2 cared for a friend, and 1 provided care for both their parents and grandparents. Five of the respondents did not specify the relationship of the person they are caring for. 22 of the 37 respondents reported living in the same household as the person they are caring for. When asked the age of the person they are caring for, respondents provided the following information. Seven of the care-recipients were under the age of 18 years, 7 were between the ages of 19 years old to 30 years old, 7 were between 40 years old to 50 years old, and 16 care-recipients were in the age range between 60 years to 90 years. Part of the survey also asks participants how long they have been responsible for taking care of the care-recipient. Of these, 15 respondents have provided care for 1 year or less, 10 24 respondents have cared for 2 to 4 years, 5 respondents have cared for 5 to 8 years, and 7 have cared for 11 years and more. The conditions of care-recipients collected in this survey were classified into four categories: (1) Disability (2) Mental Illness (3) Injuries (4) Chronic Diseases (5) Other. The categories are defined as: Disability: The Americans with Disabilities Act (ADA) defines an individual with a disability as someone who has an impairment (physical or mental) that limits them from performing one or more major life activities (ADA, 2020). Mental Illness: According to Mayo Clinic, Mental illness, also known as mental health disorders, refers to mental health conditions that affect an individual's mood, thinking, and behavior. Mental illness includes depression, anxiety disorders, schizophrenia, eating disorders, and addictive behaviors (Mayo Clinic, n.d.). Injury is defined as an injury to the body that is caused by accidents, falls, and more. Injuries can be minor to life-threatening (AHRQ, 2018). Chronic Diseases defined by the CDC is when a condition lasts one year or longer that will require ongoing medical assistance (CDC, n.d.). Some examples of chronic conditions include heart disease, cancer, chronic lung disease, diabetes, stroke, respiratory disease, kidney disease. Others include caring for individuals who needed care because of declined health and abilities due to their age. The results of conditions based on the coding from the principal investigator: 25 Respondents were asked to answer approximately how many hours a week they provide care. 15 of the respondents spend approximately 1-6 hours as a family caregiver, 3 spend approximately 7-10 hours, and 19 spend 11 or more hours per week. When asked what are the responsibilities as a caregiver, not in any particular order, the responses included: 1. Making and/or accompanying to medical appointments 2. Monitoring and/or giving medications 3. Assisting with personal care such as bathing or helping with getting dressed 4. Providing meals 5. Doing housework and errands 6. Providing and/or coordinating transportation 7. Providing companionship and emotional support 8. Managing their finances 9. Coordinating their social activities 10. Communicating with others including service providers and family members 26 Caregiving Resources A 7-point Likert scale was used to measure the respondents' experience and to capture responses that are more specific to how the respondents felt. Respondents used the 7-point Likert scale to measure their satisfaction with the goods and services they were using and was also used to evaluate how these goods and services support them in their caregiving responsibilities. Respondents were also given the opportunity to provide comments in each of the sections. The questions asked during this section are to collect information to answer these research questions (1) what resources the respondents use to support their caregiving responsibilities, (2) how did caregivers get connected to the services, and (3) what services are they not using that they wish they have a connection to? What resources were used? Question 13 asked respondents to list resources and services that the caregiver uses. Of the 37 respondents, 16 did not use any goods or services or did not list any goods or services they used. Respondents were asked to list five resources they use to support their caregiving responsibilities. Of the remaining 21 respondents, 6 were able to list 4 or more services or goods they used. The results collected were then broken into two categories, formal services and informal services: ● Formal Services- Paid interventions, training, support from health care services and organization: Healthcare Division of Services for People with Disabilities, Dialysis Center, Home Health Care Services, Patient Support Group, Food Database, Medicare, Davis Aging Center, Daybreak Daycare, Social Worker, University of Utah Psychiatrics, ABA Therapy, Speech Therapy, ABA Preschool, Respite Care, 27 Medical Professional, MyChart (Mobile App that keeps appointments and results from test for caregiver to review) ● Informal Services- resources that do not involve formal health care services and organizations, and are consistent to help enhance the day-to-day activities: Family Support, Friend Support, Bath Chair, Bedside Toilet, Walker, In House Lift, Car, Wheelchair Accommodating Van, Adjustable bed, App to keep track of feedings, Cook for Love Website with Recipes, Gait Trainer How did family caregivers get connected to the services? Question 16 asked “How did caregivers get connected to the services?” The results from question 16 indicated that the majority of the respondents learned about this good or service by a friend or family member or was recommended by a medical provider. Respondents answered that these specific goods or services help to reduce the caregiver’s effort and/or time, help to facilitate communication between the caregiver, the medical providers, and other family members, and it offers training or support to provide medical care at home. What services do family caregivers wish they have? Question 18 in the survey asks “What services are you not using that you wish you have a connection to?” Responses included home health care, home health aide, music therapy, support from DSPD, physical and emotional support for family caregivers, information on handling compassion fatigue and caregiver burnout, supplemental payments, caregiver services, community education and training opportunities to teach transfer techniques/stress management techniques, Meals on Wheels, support groups, adult hourly day care. When asked if there was anything else that respondents would like to share about their caregiving experience, the following are repeated themes and direct quotes from the respondents. 28 Theme 1: Respite Care Participants shared the need for short-term relief so they can take a break from their caregiving demands and focus on their well-being. For example, see the following answers below: ● “This is hard. I’m 50 and my body is falling apart. I haven’t had time or energy to care for myself for the last 20 years, and now my health is not good, but I have to figure out how to get healthy to care for a child who will need me for life.” ● “I haven’t been offered such services before. I care about the person I’m caring for and want as much as I can to be able to support my family members and the person I’m caring for. I want to give the person I’m caring for the best quality of life without taking away from my quality of life - I want to enjoy life together.” ● “It would be nice to have somewhere I could drop her off for 2 to 3 days so I can get respite” ● “I think it would have been awesome to have a program to get help with my mom on the weekends when I wanted to go out with my family and needed someone to watch my mom. I think it would be great to have social support for the caregiver because this is a hard job!” ● “Juggling work/ personal life balance is very difficult when caring for another.” ● “My child is worth it, but this is harder than I ever could have imagined. It’s taken a huge toll on our physical and mental health to try to care for a child with extensive needs. There are not nearly enough resources to help families who are struggling to care for these children.” 29 ● “I probably could have used a ton more help and support with my mom. I tried finding different programs to help but never could find ones that would help. It more was things if her mind was in a better place and I could drop her off. But those programs don't work for her. We have loved her social worker ad Davis aging. She checks up on us to make sure that everything is going good or if we need more help. And she was also encouraging to tell me I needed to have my mom go to daycare on my days off so I can have a break.” ● “Adult hourly day care, so I can still do activities which support my mental health” Theme 2: Financial support Participants suggested a need for more financial support or reimbursement for all the time and work they put into caring for their recipients. For example, see the following answers below: ● “He has a hard time getting help, especially because he is on disability. Having free/cheaper services would make it easier to afford.” ● “I wish there was payment for caring for my child.” Theme 3: Home Care Participants shared the need for additional assistance from either a professional caregiver or other family members. See the following answers below: ● “I think having an extra person to help with all of his needs would be very beneficial. It is difficult for one person to be able to care for him regularly due to other life responsibilities.” ● “No longer needed as he passed. A Home Health Aide would have been nice for bathing and help with transfers to the bath tub / shower.” 30 ● “The home care that we were eligible for was not very helpful. It was more like a wellness visit than actual assistance.” ● “More frequent and comprehensive home health care” ● “The services of other family members, doing it alone can be a little stressful especially being a college student.” ● “We were in new and unfamiliar territory and had no resource of how to take care of her medical and financial needs. I would have liked to help her social and emotional needs as well, but they weren't the priority at the time.” Theme 4: Long Distance Caregiver Resources One participant shared that they wish there were more resources available to long-distance family caregivers: ● “I am a state away and wish I could see everything to make sure she is good but there is no way I would be able to do that and there is only so much I can do.” Theme 5: Additional Services for Care-Recipients Participants shared the need for more support for their loved ones battling with chronic diseases, illnesses, disabilities, or injuries. For example, ● “Services for kids with autism should be more common. He is 4 years old and non-verbal, yet getting him in speech therapy took almost a year and the preschool took 7 months to get back to my family about a spot. I feel that there should be more services and they should be easier to access.” ● “Low income therapeutic services. He has a hard time getting help, especially because he is on disability. Having free/cheaper services would make it easier to afford.” 31 ● “Other than support from patient support groups, there aren't any real supports for rare diseases.” ● “I am not aware of any other services that we would have qualified for or that my Grandmother would have felt comfortable accepting.” ● “Tongue in cheek…..I really have no resources at this stage of my husband’s illness” ● “I do not have any services for my son. DSPD have said they would contact me with services in our area, they have not. They have not replied to my messages. I would like Daniel to mix with people his own age and even at some point maybe be able to attend a group home close to us.” Theme 6: Services for Family Caregivers Participants shared the need for more training courses, community education, and support groups for family caregivers. Respondents shared: ● “Services available to the caregiver. We often receive services for the person receiving care, but not those family members providing the care.” ● “Transfer Techniques, mental/ emotional health of caregiver” ● “Support groups, information groups, community education opportunities.” ● “Support for physical and emotional needs for the caregiver, stress reducing techniques and opportunities. Information on how to handle compassion fatigue/caregiver burnout” Conclusion of Results: From the response collected, the sample included a high population of young family caregivers between the ages of 20 years old to 30 years old providing care for a loved one who has one or more of the following conditions: (1) Disability (2) Mental Illness (3) Injuries (4) Chronic Diseases (5) Other (age-related). Most respondents spend more than 6 hours a week caring for 32 their loved ones and provide support anywhere between personal hygiene, housework chores, financial management, health management, and monitoring medications. Although some respondents listed that they receive some type of formal and/or informal help, many of them do not receive the adequate support that they need. They still experience unmet needs and wish they had more connection to 1) Respite care, 2) Financial Support, 3) Home Care, 4) Resources for long-distance caregivers, 5) Additional care support for their loved ones, and 6) Services for Family Caregivers. Discussion Based on the findings from this research study, it seems to be clear that there are a number of unmet needs described by family caregivers, no matter what their caregiving background is. One respondent shared “I am honestly not sure what programs are all out there. I gave up looking.” Another respondent shared “I feel invisible as a caregiver.” Family caregivers have to navigate the complexities of the service system by themselves leaving them to feel invisible. This analysis is consistent with previous research which found that family caregivers often have to navigate through the complex system by themselves (e.g. Coleman, Ground, & Maul, 2015, Harrington & McInturff, 2021, Reinhard et al., 2008, Schulz & Eden, 2016, Schulz & Tompkins, 2010). The caregiving role requires specialized knowledge and skills to their particular situation; however, research indicates that many caregivers do not receive adequate preparation (Schulz & Eden, 2016). Caregiver’s care changes over time and in response to the care demands, it may increase or decrease in caregiver distress. Changes often require the caregiver to adapt and adjust, which includes different schedules, change in routines, and other accommodations (Reinhard et al., 2008). Home and community services are essential but navigating the system is particularly 33 complex. In addition to the literature by Reinhard et al., the authors include that other research suggests society depends on family caregivers to provide care, “but does little to teach them how to do it and support them in this stressful work” (Reinhard et al., 2008). Research documents indicated that caregivers have a difficult time obtaining information from healthcare professionals and need information on how to support a patient’s care and treatment demands (Reinhard et al., 2008). Communication is important across all settings (e.g. hospital discharge, emergency room, assisted living facility, home health care, etc.) where health care professionals, patients, and their families can all gain from each other in high-quality communication (Fortinsky, 2001). It is also important to provide family caregivers with clear, understandable information (verbal, written, or electronic) about medications, tests, treatments, and resources (Zwygart-Stauffacher et al., 2000). As family caregivers navigate through the trajectories of their care, they often are unaware of support services that are available to help them. Extending resources to family caregivers and linking them to it can help family caregivers know of the adequate resources and services to help them reduce the stress, burnout, and burden of caregiving. Research Limitation This research is based on data from a cross-sectional, one-time survey, to learn about the services that family caregivers use and wish they were connected to. The next step may be to perform a longitudinal research project to follow participants over a period of time to record changes in the health trajectory of their loved ones and the shift in needs. The is also a convenience sample which limits external validity and findings may not be generalizable to other caregiving populations. 34 This data collection also indicated that there is a high population of family caregivers who are between the ages of 20 years old to 30 years old, an often underserved but growing caregiving population. The survey was distributed to only college students in the family studies courses, which limited capturing student family caregivers at a broader university-level. Future Research Future studies could benefit from using this project to do more in depth studies on younger family caregivers and their challenges to care services that are often advertised to an older caregiving population. Future studies could also benefit from this project to measure the unmet needs of family caregivers over time to capture the different needs during the caregiving trajectory of their loved ones. These measures might be helpful to capture a better picture of how to implement practices in our healthcare system and educate our future healthcare professionals on the importance of family caregivers and including them in their care. Future research should look into the cost of care and utilization of available resources and the outcomes of how it benefits caregivers and reduce the negative impact of caregiving burden. Other research can explore having a discharge system in place to educate caregivers before the patient is discharged to ensure family members are equipped with the knowledge to care during the hospital and home transition. Conclusion Families are expected to care for their loved ones, and family members would agree to do it, but going into this role without any proper training, preparation, or can put a toll on them physically and mentally. The demands of caregiving can require a lot of time and effort and result in stress that leads to caregiver burden. 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