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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.
In the patient-loved ones, the diagnosis of IPF was made in each case according to the accepted criteria.1 We conducted three semistructured FGs of ICs of patients with IPF with two goals in mind: (1) to assess how living with a patient with IPF affects ICs and (2) to gather information from ICs about how they perceive IPF to affect patients.
FGs were selected as the appropriate methodology to allow data capture from group discussion and interaction.6 FGs were conducted until thematic saturation was achieved.
Some are unwillingly thrust into this role, while others take it on without hesitation.
In either case, these ICs often perceive effects of the disease that patients themselves do not, either because patients have learned to cope by ignoring such effects or because patients have adapted to their more limited role by changing their reference standards and expectations.
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: Idiopathic pulmonary fibrosis (IPF) is an interstitial lung disease in which the normally delicate walls of the pulmonary alveoli are replaced by thick, mature collagen, making the lungs stiff and prohibiting diffusion of oxygen from airspace to the bloodstream.
We used convenience sampling to recruit ICs from the Interstitial Lung Disease Clinic at National Jewish Health between June 2012 and March 2013.As witnesses to the ravages of disease progression and patients’ declining functional capacity, ICs face many complex challenges.We conducted the current study primarily to learn about the effects of the disease on those closest to patients with IPF.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.