Date of Degree
Doctor of Philosophy (Ph.D.)
Community Health and Social Sciences
Betty Wolder Levin
Community-Based Research | Community Health | Community Health and Preventive Medicine | Family, Life Course, and Society | Health Policy | Medicine and Health | Public Health | Social Policy
caregiving, end of life care, healthcare experiences
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 portion of the population is approaching an age where many will require care.
Caregiving can significantly impact caregiver health, with caregivers having higher rates of emotional distress, physical illness, and a higher mortality risk compared to non-caregivers. Beyond the individual effect on caregivers, caregiving also has a broader population impact. For example, as many caregivers must be absent from, or leave, the workforce to care for their loved one, the estimated economic impact is more than $260 billion annually. In response, there have been governmental and organizational attempts to address caregiver needs. For example, the Recognize, Assist, Include, Support, and Engage Family Caregivers Act became law in 2018, requiring the Department of Health and Human Services (HHS) to develop, establish, and maintain a strategy for supporting family caregivers. In 2022, HHS delivered its first national strategy, and in the press release for this strategy, HHS Secretary Xavier Becerra stated, “Supporting family caregivers is an urgent public health issue, exacerbated by the long-term effects of the COVID-19 pandemic.”
The research on, and efforts to address, caregiver needs primarily focus on what is missing that would alleviate burden. While the absence of sufficient resources is an undeniable contributor towards caregiver burden, missing from the discussion is how existing structures and systems may create and perpetuate caregiver burden. The healthcare system is a particular area warranting further exploration, as most caregivers and care receivers must navigate this system at the end of life. Within the healthcare system, caregivers often serve as a “shadow workforce” filling in gaps in medical care by taking on medical, case management, and nursing tasks at home. However, caregivers are often untrained and unsupported when taking on this role. This dissertation explores the healthcare experience of caregivers when caring for a parent at the end of life.
Methods: This qualitative study sought to capture and explore the experiences, meanings, and challenges that occur when caregivers navigate the healthcare system during their caregiving journey and had the following aims:
Aim 1: Describe caregivers’ experiences and perceptions of navigating the healthcare system alongside their parent at the end of life through interviewing family caregivers of Black and White decedents.
Aim 1a: Describe the factors (e.g., religion, past experience, family dynamics, etc.) and processes (e.g., family discussions, communication with clinicians, etc.) contributing to medical decisions and care.)
Aim 1b: Describe the experience of engagement and communication with medical providers.
Aim 2: Examine the experience and meaning-making of family caregivers who cared for a dying parent using grounded theory and narrative inquiry analysis.
Aim 3: Describe the experience of caregiving, and the available/needed resources to support caregivers and families.
To allow for an in-depth exploration of caregiver experiences, semi-structured interviews were conducted with White and Black former caregivers, aged 50 or older, who cared for a parent at the end of their life in the New York metropolitan area. During the interviews, demographic information was collected; participants were asked to share their story in an open format (i.e., however felt most natural to them and without interruption); clarifying questions were asked about their stories; and then participants were asked a series of questions regarding their healthcare experiences when serving as a caregiver, and their thoughts on these topics more broadly. Two analytic approaches were taken: grounded theory and narrative analysis. A grounded theory approach was utilized to identify themes, patterns, and concepts across interviews utilizing codes derived from the transcripts. Narrative analysis took a holistic viewpoint, through which each transcript was studied as a whole, to understand the narratives and meanings within the participant’s stories.
Results: Twenty-two former caregivers participated in this study, resulting in 43 hours of transcribed interviews. Their interviews generated a wealth of insight and information, and this dissertation focuses on three key findings. The first key finding is that the relationship between caregiver, care recipient, and medical providers (and the healthcare system more broadly) are intertwining, with each having an impact on the others. Through analysis of the narratives from two participants’ interviews (both daughters who cared for their mothers), we found that death and dying is not just a biological event, but a social one. Their narratives highlight how medical decision-making and care experiences at the end of life are complex, relationship-focused, and often go unrecognized in medical settings and the literature.
The second key finding is that family vigilance, the frequent or constant physical presence of a family member when a loved one is in a healthcare setting, is a common practice by caregivers. As described by the participants, the reasons for this vigilance stemmed from concerns regarding the trustworthiness of the healthcare system, including safety concerns, lack of sufficient attention, and inadequate care. Caregivers reported that they believe their presence increased the amount of attention and quality of care their parents received. Caregivers’ concerns regarding the trustworthiness of the healthcare institutions predominantly stemmed from the view that healthcare institutions’ primary goal is financial gain which may come at the cost of patient access, care, and safety. The caregivers’ concerns regarding the trustworthiness of the healthcare system spanned race, income, and financial circumstances.
The third key finding is that caregivers report being unsupported, uninformed, and in need of additional resources, which echoes what is found in the current literature. Caregivers reported three main areas of need: information; social and mental health support; and healthcare navigation and communication. The caregivers offered recommendations for resources and services to meet these needs. A limited review of existing resources found that while some of their recommended programs exist, others are not currently available. There is an opportunity to develop additional caregiver-informed resources and a need to conduct more robust outreach to ensure caregivers are aware of, and able to connect with, existing services.
Conclusion: Nearly all of us will be a caregiver at some point in our lives, and we have an obligation to ourselves, to those we love, and to our communities to address caregiver burden. This novel study explored caregivers’ healthcare experiences when caring for a parent at the end of life, and the how perceptions, relationships, and dynamics between the caregiver, care receiver, and the healthcare system have potential to harm caregivers. As the need for caregiving continues to increase, we must ensure caregivers are not only supported by developing resources, and ensuring access to these resources; but also, that their scope of responsibilities are reconsidered and reduced so they can focus on what matters most — their relationship with the care recipient. To do this, we must interrogate and address how existing systems (like the healthcare system) contribute to caregiver burden. The findings of this first-of-its kind study offer insight into the challenges caregivers face and opportunities to better serve current and future caregivers.
Mehran, Lillian, ""I Stayed There the Whole Night": Exploring Caregivers' Experiences With the Healthcare System When Caring for a Parent at the End of Life" (2023). CUNY Academic Works.
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