This study investigated adult child caregivers existential experience providing care to their parents at end-of-life (EOL). A literature review identified limited research about the existential experience of adult child caregiver populations providing EOL care. For instance, Totman, Pistrang, Hennessey, and Martin (2015) identified existential domains as receiving very limited attention, despite a large amount of research focused on caregiver needs. In addition, Totman et. al. reported limited utilization of theoretical frameworks in current research. Consequently, Totman et al. emphasized the importance of exploring existential issues of caregivers utilizing theoretical perspectives. Furthermore, the review of literature on caregivers identified limited research on distinct family member characteristics despite the reliance on families to provide care to relatives (Sherman, 1998; Wittenberg-Lyles, Demiris, Oliver, & Burt, 2011). For instance, Abernethy, Burns, Wheeler, and Currow (2009) recommended more research on caregiver subpopulations so that professionals could design better individualized interventions targeting the needs of distinct caregivers. Literature identified the need for future research to improve interventions designed to support family caregivers.
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For example, Hudson, Zordan, and Trauer (2011) reported survey research that sought to identify research priorities for family caregiver research. The survey of fifty-five study participants from palliative care professionals identified future research priorities as the experience of caregivers, use of theoretical frameworks, influence of care site on caregiving, and the prevention of anticipatory grief and under-researched caregiver groups as well as other areas involved with caregiving. This study was a response to Hudson et al.’s list of needs for future research on caregiver’s experience. In addition, following the recommendation of Totman et al. (2015), This study utilized an existential theoretical framework and investigated the existential experience of adult sons and daughters providing home-based care to parents at EOL. The study examined adult child caregivers following recommendation of other researchers (Abernethy et al., 2009; Sherman, 1998; Wittenberg-Lyles et al., 2011). Past research indicated that caregivers face physical, psychological, social, and existential challenges and suffering in the caregiver role (Sherman, 1998). For example, Boerner and Mock (2012) reported the reciprocal nature of pain and suffering within the patient-caregiver relationship. Boerner and Mock identified reciprocal suffering as an important and understudied phenomenon. In fact, Boerner and Mock reported that reciprocal suffering may consist of more than the relationship between patient physical pain and caregiver’s affective outcomes. In speculation, an important aspect of this research was facing death, which Bachner, O’Rourke, and Carmel (2011) reported as related to emotional challenges for patients and caregivers at EOL. This study seemed aligned with needs of future research and with Morris, King, Turner, and Payne (2015) study that reported gaps in how best to support informal family caregivers. Therefore, this study investigated sons and daughters existential experience of providing care to their parents at EOL. The organization of this first chapter provides sections with headers: study background, study rationale, study purpose and significance, and research question. Each of the sections will include an organization format to guide readers. The final chapter sections offer definitions and discuss research design including a section on assumptions and limitations. The final chapter section offers description of the remainder of the study. In closing this introduction, this study utilized a qualitative phenomenological methodology, which seemed appropriate to investigate lived experience of adult child caregiver providing EOL care to the parents EOL. Background of the Study This section provides background information for this study that investigated adult child caregiver existential experience providing EOL care to parents. This section includes an introduction followed by the following themes; importance of family caregivers, caregiving domains and EOL, existential issues and caregiving, supporting distinct caregiver subpopulations, and theoretical framework of the study. Families are increasingly providing significant and unprecedented levels of informal care …show more content…
Researcher reported that the value of unpaid informal family care represents billions of dollars (Bastawrous, Gignac, Kapral, & Cameron, 2014; Hughes, Locock, & Ziebland, 2013; Parmar, Jette, Bremault-Phillips, & Holroyd-Leduc, 2014; World Health Organization, 2012). Cohen, Cook, Kelley, Sando, and Bell (2015) indicated that in the United States the dollar value of unpaid informal care is equivalent to 75% of yearly Medicare expenditures. Furthermore, Funk et al. (2010) reported healthcare policy has tasked families with higher levels of responsibility to provide care to terminally ill relatives. There were several reasons to pursue caregiver
For example, Hudson, Zordan, and Trauer (2011) reported survey research that sought to identify research priorities for family caregiver research. The survey of fifty-five study participants from palliative care professionals identified future research priorities as the experience of caregivers, use of theoretical frameworks, influence of care site on caregiving, and the prevention of anticipatory grief and under-researched caregiver groups as well as other areas involved with caregiving. This study was a response to Hudson et al.’s list of needs for future research on caregiver’s experience. In addition, following the recommendation of Totman et al. (2015), This study utilized an existential theoretical framework and investigated the existential experience of adult sons and daughters providing home-based care to parents at EOL. The study examined adult child caregivers following recommendation of other researchers (Abernethy et al., 2009; Sherman, 1998; Wittenberg-Lyles et al., 2011). Past research indicated that caregivers face physical, psychological, social, and existential challenges and suffering in the caregiver role (Sherman, 1998). For example, Boerner and Mock (2012) reported the reciprocal nature of pain and suffering within the patient-caregiver relationship. Boerner and Mock identified reciprocal suffering as an important and understudied phenomenon. In fact, Boerner and Mock reported that reciprocal suffering may consist of more than the relationship between patient physical pain and caregiver’s affective outcomes. In speculation, an important aspect of this research was facing death, which Bachner, O’Rourke, and Carmel (2011) reported as related to emotional challenges for patients and caregivers at EOL. This study seemed aligned with needs of future research and with Morris, King, Turner, and Payne (2015) study that reported gaps in how best to support informal family caregivers. Therefore, this study investigated sons and daughters existential experience of providing care to their parents at EOL. The organization of this first chapter provides sections with headers: study background, study rationale, study purpose and significance, and research question. Each of the sections will include an organization format to guide readers. The final chapter sections offer definitions and discuss research design including a section on assumptions and limitations. The final chapter section offers description of the remainder of the study. In closing this introduction, this study utilized a qualitative phenomenological methodology, which seemed appropriate to investigate lived experience of adult child caregiver providing EOL care to the parents EOL. Background of the Study This section provides background information for this study that investigated adult child caregiver existential experience providing EOL care to parents. This section includes an introduction followed by the following themes; importance of family caregivers, caregiving domains and EOL, existential issues and caregiving, supporting distinct caregiver subpopulations, and theoretical framework of the study. Families are increasingly providing significant and unprecedented levels of informal care …show more content…
Researcher reported that the value of unpaid informal family care represents billions of dollars (Bastawrous, Gignac, Kapral, & Cameron, 2014; Hughes, Locock, & Ziebland, 2013; Parmar, Jette, Bremault-Phillips, & Holroyd-Leduc, 2014; World Health Organization, 2012). Cohen, Cook, Kelley, Sando, and Bell (2015) indicated that in the United States the dollar value of unpaid informal care is equivalent to 75% of yearly Medicare expenditures. Furthermore, Funk et al. (2010) reported healthcare policy has tasked families with higher levels of responsibility to provide care to terminally ill relatives. There were several reasons to pursue caregiver