The Lived Experiences of Caregivers of Lung Transplant Recipients

Authors

Joy Adella GlazeFollow

Document Type

Dissertation

Degree

Doctor of Philosophy (PhD)

Major/Program

Nursing

First Advisor's Name

Dorothy Brooten

First Advisor's Committee Title

Committee chair

Second Advisor's Name

JoAnne Youngblut

Second Advisor's Committee Title

Committee member

Third Advisor's Name

Jean Hannan

Third Advisor's Committee Title

Committee member

Fourth Advisor's Name

Timothy Page

Fourth Advisor's Committee Title

Committee member

Keywords

Lung transplant, Lung transplant recipient, Lung transplant caregiver, Caregivers' burden, Caregivers' role, Caregivers' health, Caregivers' gender, Informal caregivers, Phenomenology, Hermeneutic phenomenology

Date of Defense

3-2-2018

Abstract

Lung transplantation is a treatment for patients with end stage lung disease; they will not survive without such surgery. A caregiver is essential for a patient to become eligible for a lung transplant and the caregiver plays an essential role in the transplant recipient’s care both before and after transplant surgery. Most caregiver research has been conducted on caregivers of persons with Alzheimer’s disease, dementia or on elderly patients, however, it is important to examine caregivers’ experiences caring for other patient groups with disabling conditions. Caregivers of transplant recipients are one such group.

The purpose of this qualitative study, using a hermeneutic phenomenological approach, was to examine the lived experiences of caregivers of lung transplant recipients pre- and post-lung transplantation. The study used semi- structured, face to face, tape recorded in- depth interviews to document the experiences of a purposive sampling of 20 caregivers of lung transplant recipients. Interviews (English, Spanish) were transcribed verbatim and analyzed for emerging themes. The resulting 4 themes and 12 sub themes were: 1) Establishing the diagnosis; 2) Caregivers roles; 3) Caregivers psychological and psychosocial Issues; and 4) Support. The 12 sub themes were:1) Caregivers reaction to transplant option; 2) Caregivers’ lack of basic knowledge as related to lung transplant 3) Disease progression: Reality of unanticipated changes/fear of death; 4) Pre- transplant experiences; 5) Hospital course; 6) Home care; 7) Lifestyle changes and Social activities;8) Physical health and Emotional health ; 9) Financial and Employment issues;10) Family/Friends;11) Professional support; 12) Support groups. Study results demonstrated caregivers’ lack of knowledge about transplantation, dramatic changes in caregivers ‘family life, social activities, employment, and often financial status. Results also demonstrated a need for health care providers and policy makers to recognize caregivers’ stressful life changes and implement informational, psychological and emotional interventions and policies to assist these caregivers during their stressful and tedious experiences.

Identifier

FIDC006913

Recommended Citation

Glaze, Joy Adella, "The Lived Experiences of Caregivers of Lung Transplant Recipients" (2018). FIU Electronic Theses and Dissertations. 3683.
https://digitalcommons.fiu.edu/etd/3683