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.
Aim This concept analysis describes attributes, antecedents, and consequences of dignity‐centered care for people with chronic progressive disease. Methods Rodgers' method of concept analysis was used to clarify the concept's defining attributes. Databases searched were PubMed, MEDLINE, EMBASE, CINAHL, and Ichushi‐Web by NPO Japan Medical Abstracts Society, in English and Japanese, from 1976 to 2017. The combination of MESH and keywords used were (dignity), and (care), and (chronic disease) or (chronic illness). Results Three antecedents were identified: loss of physical function and reduced psychological capacity, independence and role; living with uncertainty of illness; and multi‐faceted distress. There were four attributes identified: bolstering self‐esteem, reducing multi‐faceted distress, continued relationship, and protecting individual's rights. Four consequences were identified: improved self‐esteem, relief from multi‐faceted distress, deepening the purpose and meaning of life, and maintaining and/or improving the quality of life. Conclusion Dignity‐centered care is defined as: care that results in improvement of self‐esteem, deepens purpose and meaning of life, maintains and improves quality of life and provides relief from multi‐faceted distress. This happens through protecting the individual's rights, bolstering self‐esteem and reducing multi‐faceted distress through continued relationships with family, friends, and providers. There is a need for continued involvement with those individuals who have lost physical function, psychological capacity, autonomy, and role. They live with uncertainty of illness and exhibit multi‐faceted distress. This concept is a fulcrum for patient and nurse reciprocity enabling both to realize greater integrity and respect, and is useful for nursing practice and research.
The critical nursing interventions were: the relief of symptoms, particularly dyspnea and cough; coordinating lifestyle changes; providing psychological support for living with an illness beginning from the time of diagnosis; and carefully starting the end-of-life discussions with patients and families.
AimThe aim of this study was to examine the reported characteristics of extant studies on palliative care for patients with idiopathic pulmonary fibrosis.DesignNarrative review.MethodsA comprehensive search of the following electronic databases in English and Japanese commenced from 2002 ‐ December 2017. Eligibility criteria was determined by the inclusion and exclusion criteria.ResultsNineteen articles were eligible. The characteristics of palliative care for patients with idiopathic pulmonary fibrosis were symptoms relief, start time of palliative care and palliative care needs of patients and care partners. Also, patients' education of disease management including advanced care planning and developing a palliative care system by the healthcare provider including multidisciplinary professional teams was identified. The care provided was a “care conference” and integrated palliative care was carried out in the patient's home. The majority of the studies were qualitative and retrospective in design. The palliative care system and the development of palliative care were limited.
Aim To evaluate whether non‐pharmacological nursing interventions improve the quality of life, including both physical and psychosocial states, for patients with idiopathic pulmonary fibrosis, compared to patients receiving the usual care visit or not receiving routine nursing. Methods A comprehensive search was conducted of the following electronic databases in English and Japanese: PubMed, MEDLINE, EMBASE, CINAHL, The Cochrane Central Register Controlled Trials (CENTRAL), NPO Japan Medical Abstracts Society's Ichushi – Web database, National Institute of Informatics’ Scholarly and Academic Information Navigator (CiNii) database, Grants‐in‐Aid for Scientific Research (KAKEN) database, and Database of Health Labor Sciences Research Grants. The keywords were as follows: [interstitial lung disease], [interstitial pulmonary fibrosis], [idiopathic pulmonary fibrosis] AND [nurse OR nurses’ role OR nursing]. A search method was used based on the eligibility criteria without including words, such as “randomized controlled trial” (RCT). Three categories defined the search parameters: (i) patients with idiopathic pulmonary fibrosis; (ii) non‐pharmacological nursing interventions; and (iii) RCT. Results Three‐hundred‐and‐ninety‐four articles were reviewed. Two articles met all the eligibility criteria. The nursing interventions were “disease management program” and “community case conference,” both involving nurse specialists. The quality‐of‐life scores decreased after 6 weeks of intervention with the disease management program. The quality‐of‐life scores improved after 4 weeks of intervention with the community case conferences. The risk of bias for these two studies was high. Conclusion There was limited evidence of non‐pharmacological nursing interventions improving the quality of life of patients with idiopathic pulmonary fibrosis.
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