Date of Award
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Doctor of Philosophy (Ph.D.) Nursing
School of Nursing and Health Sciences
Palliative care has grown in its acceptance nationally and formed the base of a growing number of programs to provide care in a way that recognizes the importance of supporting people with chronic, debilitating, and life-limiting illnesses by focusing on “care” rather than “cure.” This special care warrants an understanding by all nurses and requires education across specialties and disciplines. Despite the increase of palliative care services in hospitals and other settings, long-term care and home care agencies continue to struggle with the education of staff and delivery of care to clients that incorporate the central tenets of what has been defined by the Guidelines for Quality Palliative Care developed by the National Consensus Project (National Coalition for Hospice & Palliative Care, 2018). Numerous educational programs have been developed to train physicians, nurses, and others to improve communication skills, reduce pain and manage symptoms, and foster an environment that supports patients nearing death and their families. While there has been research on the education of health care providers on palliative care, little of this research has been done in the home health care setting. To incorporate palliative care into this setting, the health care providers on the home care team need to be adequately trained to increase their comfort with and knowledge of palliative care. Some of the providers’ understanding and confusion of palliative and hospice care may need resolving, and some of their personal beliefs about end-of-life (EOL) treatment and palliative care may be barriers to their readiness to participate in a change of treatment and care goals, which may include their own fear of death or personal negative experiences with dying loved ones.
While palliative care services are underutilized under the best circumstances, the emergence of COVID19 has further highlighted the importance of and vital need for palliative and EOL care. Already overburdened health care systems due to COVID-19 are faced with the challenge of administering safe and effective palliative and EOL care. For this study, two time periods were anchored by the two data collection points: pre- COVID-19, referred to as TIME 1: one year prior to the outbreak of COVID-19 in New York (January 2019) and TIME 2: approximately one year after the outbreak of COVID-19 in New York (February/March 2021) when home care services had been altered by emergency and EOL care needs due to the COVID-19 pandemic. The purpose of the study is to compare and determine if correlations exist related to palliative and EOL care between Time 1 and Time 2 involving health care providers’ comfort with, attitudes toward, and fear of dying. Specifically, this study examines the interprofessional home care team in a large multi-hospital system to (a) describe professionals’ characteristics, comfort with and attitudes about EOL treatment and palliative care, and their fear of death at Time 1 and (b) compare them with Time 2 characteristics, comfort, attitudes, and fear of death. It also includes an examination of the relationship of these characteristics with the home care staff’s selfreported professional self-confidence in EOL caregiving.
This study used a descriptive, pre- and post- comparative, and correlational design of multi-professional home care providers’ comfort with, attitudes toward, and fear of dying before and after Time 1 and Time 2. The pre-survey (Time 1) was used prior to the pandemic to determine which characteristics of home care providers influence their comfort with and attitudes about palliative and EOL care, and fear of dying. The post-survey (Time 2) compares these previously recorded variables with their self-reported selfconfidence in EOL caregiving, an educational assessment tool in the subscales of cultural and ethical values; patient and family- centered communication; and effective care delivery. The study sample was recruited from the roster of all professional health care providers at a large, certified home health care agency (CHHA). Participants included registered nurses (RNs), physical therapists (PTs), occupational therapists (OTs), speech therapists (STs), and medical social workers (MSWs) (n = 601) who were employed at and made home visits for the CHHA with an average daily census of 3,000 patients. The Time 1 survey was distributed in January 2019. A total of 33% of the surveyed providers responded (n = 200). The Time 2 survey was distributed to the same agency roster in April 2021; due to some attrition and some newer employees in the organization, there was some expected variation in the Time 2 sample population. This survey yielded a suitable expected sample for the proposed analysis of >180 providers. The measures include instruments developed for the study and pre-tested for reliability including items to measure comfort (Comfort in Providing Palliative Care [CPPC]); the Collett- Lester Fear of Death Scale with reported validity and reliability, which includes four subscales: Fear of Death, Fear of Dying, Fear of Others Death, Fear of Others Dying; and F-S Hospice Scale: Views on Hospice Care to measure attitude toward hospice (Attitude Toward Hospice Scale [ATHS]). The dependent measure of the Time 2 sample is the End-of-life Professional Caregiver Survey (EPCS) instrument used frequently to assess educational needs of staff in the clinical practice domains of palliative care. The subscales include (a) Cultural and Ethical Values (CEV) (8 items), Patient and Family Centered Communication (PFCC) (12 items), and Effective Care Delivery (ECD) (8 items).
The results are a descriptive analysis of all measures related to home care providers’ EOL comfort, attitudes, and fear of dying; a comparative analysis of EOL comfort, attitudes, and fear of dying before and after the onset of the COVID-19 pandemic; and a regression analysis of related variables with the educational needs identified in the self-reported EPCS subscales.
Summary and Recommendations
This study explored the relationship between home health care providers’ personal characteristics and their comfort with and attitudes toward hospice and palliative care, and fear of death and dying of self and others. The findings of the study yielded significant results regarding staff level of comfort, attitudes, and fear of death and dying in relation to staff personal characteristics. The study demonstrated changes in staff comfort and attitudes toward palliative and EOL care during the onset of the pandemic. Differences were seen between Time 1 and Time 2 in staff level of comfort in discussing the dying process, attitudes toward hospice related to pain control, feelings toward fear of death (self) in the measure of death and the shortness of life, feelings of fear about dying away from others, and feelings about the dying (others) as a reminder of their own death. The study results also identified certain predictors for staff self- reported EPCS in the domains of personal characteristics, level of comfort with, and attitudes about providing EOL and palliative care services. Further research is needed to guide future policies and programs to improve access to family-centered palliative care during a global health crisis such as the COVID-19 pandemic need to be implemented. An investment in further research and the resultant policy changes from the study findings can further support home health care workers in caring for patients and families at end of life.
Infante, Elizabeth, "Descriptive, Comparative, and Correlational Study Related to End-of-Life Care Prior to the Covid-19 Pandemic Outbreak (Time 1) and 12 Months Following Lockdown (Time2)" (2022). Theses & Dissertations. 168.