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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.
All ICs expressed heartfelt empathy towards their loved ones with IPF (“I just feel so bad for him.”).
When the diagnosis of IPF was made, some ICs were “just happy to [finally] have a diagnosis.” Some ICs knew just how devastating a diagnosis of IPF can be: while one IC's husband was in recovery after his lung biopsy, she asked the surgeon who knew the diagnosis was almost certainly IPF based on the appearance of the lung, “I just want to know, do we wish it was cancer [something potentially more amenable to therapy than of IPF]?
A few studies have been conducted to examine patients’ perceptions of being diagnosed with IPF,2–4 and in only a handful of studies did investigators focus on how patients live day-to-day with this disease.3 5 IPF causes significant frustrations for patients: as the disease progresses, they become increasingly limited by shortness of breath; supplemental oxygen is ultimately needed by all patients with IPF to combat hypoxaemia; most patients find adapting to the ‘sick person’ role challenging; and they begin to rely on others to assist with various activities.3 As in other chronic, progressive conditions, the effects of IPF extend beyond the patient.
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.
” And although being handed a diagnosis of IPF was ‘devastating’ to the patient, it was often just as devastating for the ICs.
In the words of one, “Once he was diagnosed, I think my whole body just quivered for like two months.
Additionally, given their proximity to patients—a vantage point allowing them to view patients’ change over time—ICs’ perspectives were expected to allow a fuller understanding of the changing effects of IPF on patients.
We used convenience sampling to recruit ICs from the Interstitial Lung Disease Clinic at National Jewish Health between June 2012 and March 2013.
ICs were either contacted via telephone or approached at the time of their loved one's clinic visit.