Date of Award

2020

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Graduate Group

Nursing

First Advisor

Mary Ersek

Abstract

Statement of Problem: Palliative care is patient- and family-centered and addresses the physical, psychosocial, and spiritual needs of patients living with serious illness. Lung transplant patients experience many physical and psychosocial challenges. However, the integration of palliative care for these patients is rare and there is little research in this area. This dissertation addresses the following aims: 1) synthesize the literature describing the palliative care needs, current role, and factors influencing integration 2) describe the palliative care needs of lung transplant candidates and 3) describe the supportive care needs of family caregivers.

Methods: For the first aim, I reviewed the literature to better understand the current role of palliative care in lung transplant patient management. To address the second and third aims, I conducted cross-sectional surveys of lung transplant candidates and their caregivers. I used an adapted version of the Needs Near the End-of-Life Screening Tool (NEST) to elicit the patients’ needs and the Carer Support Needs Assessment Tool (CSNAT) to describe the caregivers' needs.

Results: In the seven reviewed papers, palliative care was consulted in a minority of patients and typically late in the process. The reasons for a consult were most commonly physical symptoms. Barriers such as misperception of palliative care, communication challenges, and unrealistic patient/ family expectations impacted integration. No studies directly ascertained patients’ and families’ palliative care needs. For aim 2 and 3, both samples were recruited from the University of Pennsylvania Health System and included 111 patients and 78 caregivers. Patients reported physical symptoms including shortness of breath (97.3%) and tiredness (91.9%) that affect their physical activity (99.1%). Participants also had concerns related to the distress of end-of-life (81.1%) and preparing their families for losing them (75.7%). Caregivers needed more information about what to expect in the future (73.1%) and who to contact with patient concerns (57.7%). They also needed support for financial, legal, and work issues (55.1%) and their own fears and worries (51.3%).

Conclusion: Important palliative care needs were identified by both lung transplant candidates and their caregivers. Future research is needed that examines strategies to provide for these needs and associated outcomes.

Embargoed

Available to all on Thursday, April 13, 2023

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