Experience of Japanese Patients with Idiopathic Pulmonary Fibrosis who Cope with Dyspnea

Abstract

This study aimed to clarify experiences of Japanese patients with idiopathic pulmonary fibrosis (IPF) who were coping with dyspnea. We conducted semi-structured interviews with a total of 14 subjects who had developed dyspnea (Borg Scale I or higher) on walking. The data obtained were subjected to qualitative and inductive analyses, which led to the extraction of 36 subcategories. These subcategories were divided into 7 categories, each of which represented the following 7 experiences of IPF patients coping with dyspnea: 1) distress due to physical changes, 2) a growing sense of helplessness, 3) making adjustments to one's lifestyle in order to cope with their sensation of dyspnea, 4) feeling conflicted between dyspnea that occurs during work hours and its alleviation by taking oxygen, 5) being estranged from other people due to an inability to cooperate with them, 6) one's life in which they require assistance from their family and friends, and 7) searching for the significance of experiencing dyspnea. IPF patients restricted their own daily activities due to the stigma of suffering from dyspnea and needing to receive at-home oxygen therapy. In addition, to cope with such a sensation, while feeling conflicted, they changed their perspective on life, and searched for the significance of experiencing illness.

End‐of‐life trajectory of coping and self‐care of patients with idiopathic pulmonary fibrosis: A meta‐synthesis using meta‐ethnography

“…There were very few intervention studies on nursing care. However, there were several informative qualitative studies that involved the narratives of patients with IPF who were living at home regarding the experiences of their self‐care and coping (Duck et al ., ; Igai, ; Schoenheit, Becattelli, and Cohen ). These studies revealed the phenomena experienced by patients.…”

“…A qualitative study of patients with IPF and coping with dyspnea described additional narratives of patients expressing existential suffering, such as questioning the meaning of living with spiritual pain, psychological distress, and symptoms that are associated with the progression of IPF. These symptoms caused physical and additional psychological and emotional burdens, all of which degraded their QOL (Igai, ).…”

A narrative literature review of palliative care regarding patients with idiopathic pulmonary fibrosis

“…The sensation of dyspnoea is one of the characteristic symptoms of IPF, which impedes the patient's independent living capacity. Moreover, research found that those patients' experiences of coping with dyspnoea brought up questions and concerns about the meaning of their illness experiences (Igai, ). Therefore, researchers began urging that specific goals fall within the realm of palliative care and needed to include a focus on symptom control (Gilbert & Smith, ).…”

“…Patients with cancer tended to receive palliative care for the full range of painful situations including spiritual pain when searching for meaning of life and purpose; unfortunately patients with IPF are still suffering from the burden of symptoms and emotions (Igai, ). In the systematic review on nursing to improve the quality of life for IPF patients, much of the research was qualitative and retrospective research.…”

“…The IPF statement (Raghu et al, 2011) noted that patients and families also sought symptomatic relief from phenomenon such as physical, emotional and psychological distress and needed spiritual support. Lee, McLaughlin, and Collard (2011) Patients with cancer tended to receive palliative care for the full range of painful situations including spiritual pain when searching for meaning of life and purpose; unfortunately patients with IPF are still suffering from the burden of symptoms and emotions (Igai, 2016).…”