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      A qualitative study of informal caregivers’ perspectives on the effects of idiopathic pulmonary fibrosis

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          Abstract

          Background

          Idiopathic pulmonary fibrosis (IPF) is a life-shortening lung disease that leads to significant morbidity in patients. The devastation IPF imposes extends beyond patients: it affects their spouses, loved ones and any other person who might take on the role of informal caregiver (IC) to the patient.

          Objective

          The aim of this study was to capture ICs’ perspectives on how they are affected by having a loved one with IPF. Given ICs’ vantage, data were also collected on their perceptions of how IPF impacted their patient-loved ones over the course of the disease.

          Methods

          Reflexive team analysis was used to analyse the transcripts from semistructured focus groups conducted with ICs of patients with IPF. Based on the analyses, a conceptual framework of the IC's journey with a patient with IPF was developed and includes suggestions for interventions that might ease the burdens ICs endure while caring for their patient-loved ones.

          Results

          14 ICs included in this study experienced several hardships throughout the course of their loved ones’ illness, from emotional devastation at the time of diagnosis to living with an ‘impatient,’ ‘cranky’ loved one and being forced to exist in a ‘smaller world’ because of the physical limitations IPF imposed on their partners. The threat of patients needing supplemental oxygen was central to creating angst among patients and ICs, and supplemental oxygen use by patients prohibited them and their ICs from living the ‘normal’, carefree lives they desired.

          Conclusions

          Being an IC to a patient with IPF is extremely challenging (as 1 IC put it: “…harder on the spouse than the patient in some ways”). As patients attempt to adapt to the ‘sick person’ role, ICs face a struggle between performing their duties as caregiver and maintaining their own identities and independence.

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          Most cited references 19

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          Constructing grounded theory—A practical guide through qualitative analysis

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            Quality of life of family caregivers of cancer survivors: across the trajectory of the illness.

             Youngmee Kim,  B Given (2008)
            Cancer affects not only the quality of life (QOL) of individuals with the disease but also that of their family members and close friends. The impact on various aspects of the family caregivers' QOL is significant throughout the trajectory of the illness. The authors reviewed literature on the QOL of family caregivers at the acute and middle- to long-term survivorship phases as well as the bereavement phase. By using several databases, the authors searched the literature published in English from 1996 through July 2007. Keywords searched included cancer, carcinoma, family, family member, caregivers, and quality of life. Several criteria were used to guide the literature review: Articles had to be published in refereed journals and had to use rigorous methods, sample, and validated measures. The findings suggested that the QOL of family caregivers of individuals with cancer varies along the illness trajectory. This highlights were importance of assessing the ongoing adjustment of the caregivers over time. However, there were few theory-driven studies, and significant gaps remain in the current understanding of the effects of family caregiving beyond the time of diagnosis and treatment. Accumulating evidence has supported the concept that cancer affects not only the patients/survivors but also their family members. However, theoretically and methodologically rigorous research on various aspects of the family's QOL, including not only the psychological but also the physical, spiritual, and behavioral adjustment to cancer in the family, remains sparse. Family-based interventions across the trajectory of the illness also are needed.
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              Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers.

              Terminal illness imposes substantial burdens--economic and otherwise--on patients and caregivers. The cause of these burdens is not understood. To determine the mechanism for economic and noneconomic burdens of terminal illness and to identify potential ameliorating interventions. In-person interviews of terminally ill patients and their caregivers. Six randomly selected U.S. sites: Worcester, Massachusetts; St. Louis, Missouri; Tucson, Arizona; Birmingham, Alabama; Brooklyn, New York; and Mesa County, Colorado. 988 terminally ill patients and 893 caregivers. Needs for transportation, nursing care, homemaking, and personal care; subjective perception of economic burden; expenditure of more than 10% of household income on health care costs; caregiver depression and sense of interference with his or her life; and patient consideration of euthanasia or physician-assisted suicide. Of all patients, 34.7% had substantial care needs. Patients who had substantial care needs were more likely to report that they had a subjective sense of economic burden (44.9% compared with 35.3%; difference, 9.6 percentage points [95% CI, 3.1 to 16.1]; P = 0.005); that 10% of their household income was spent on health care (28.0% compared with 17.0%; difference, 11.0 percentage points [CI, 4.8 to 17.1]; P < or = 0.001); and that they or their families had to take out a loan or mortgage, spend their savings, or obtain an additional job (16.3% compared with 10.2%; difference, 6.1 percentage points [CI, 1.4 to 10.6]; P = 0.004). Patients with substantial care needs were more likely to consider euthanasia or physician-assisted suicide (P = 0.001). Caregivers of these patients were more likely to have depressive symptoms (31.4% compared with 24.8%; difference, 6.6 percentage points [CI, 0.4 to 12.8]; P = 0.01) and to report that caring for the patients interfered with their lives (35.6% compared with 24.3%; difference, 11.3 percentage points [CI, 5.0 to 17.7]; P = 0.001). Caregivers of patients whose physicians listened to patients' and caregivers' needs had fewer burdens. Substantial care needs are an important cause of the economic and other burdens imposed by terminal illness. Through empathy, physicians may be able to ameliorate some of these burdens.
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                Author and article information

                Journal
                BMJ Open Respir Res
                BMJ Open Respir Res
                bmjresp
                bmjopenrespres
                BMJ Open Respiratory Research
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2052-4439
                2014
                3 January 2014
                : 1
                : 1
                Affiliations
                [1 ]Autoimmune Lung Center and Interstitial Lung Disease Program, National Jewish Health , Denver, Colorado, USA
                [2 ]Department of Community and Behavioral Health, Colorado School of Public Health , Aurora, Colorado, USA
                [3 ]Colorado Health Outcomes Program, University of Colorado School of Medicine , Aurora, Colorado, USA
                Author notes
                [Correspondence to ] Dr Jeffrey J Swigris; swigrisj@ 123456njc.org
                Article
                bmjresp-2013-000007
                10.1136/bmjresp-2013-000007
                4212718
                25478168
                Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions

                This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

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                Categories
                1506
                Interstitial Lung Disease
                Original Article
                Custom metadata
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                interstitial fibrosis

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