Discussion
We conducted focus groups with ICs of patients with IPF to achieve two goals: (1) to better understand the challenges of being an IC to a patient with IPF and (2) to examine how ICs perceive the impact of IPF on their patient-partners. To our knowledge, this is only the second study to examine the perspectives of ICs of patients with IPF, the only study in which FGs were used and the first using data from US ICs.
The ICs in this study perceived shortness of breath, cough and fatigue/low stamina to be the most troubling of patients’ IPF symptoms. These symptoms led to significant limitations in patients’ physical activity. In their study, performed in the UK, Bajwah et al12 performed in-depth interviews with eight patients and four ICs of advanced patients with IPF as a first step to developing an end-of-life intervention for fibrosing ILD patients and their ICs. All participants identified patients’ breathlessness as the ‘overwhelming symptom.’ Most of their patient-subjects also reported cough as a prominent symptom, and three reported sleep disturbance. Only one of their patient-subjects reported fatigue, whereas the ICs in our study repeatedly mentioned tiredness/fatigue/low stamina as an intrusive symptom for their partners. Whether there are phenotypic differences between patients with IPF in the UK and the USA, whether there is a difference in the perception of fatigue by ICs of patients with IPF in the UK versus the USA, or whether differences in study design account for the discrepancy is unclear.
What is clear—and apparent from ICs in both Bajwah et al's12 study and ours—is that patients with IPF are frustrated by their inability to escape the weight of their illness, and ICs bear the brunt of that frustration when patients (understandably) ‘get nasty,’ ‘cranky’ or ‘impatient.’ The ICs in our study also saw fear in their loved ones and observed that while this fear manifested for a few as an all-consuming focus on the disease, many patients used denial to cope with this life shortening, unpredictable illness. Both responses caused further distress for ICs.
A central issue in our study, but one that was not reported on in Bajwah and her coinvestigators’ manuscript, was O2. The ICs of patients who had not yet been prescribed O2 viewed it forebodingly and, like their patient-partners, as an unwelcome milestone of disease progression and a significant impediment to a carefree lifestyle (for themselves and their partners). The ICs of patients who were using O2 saw their loved ones turn up their O2 flow rate on ‘bad’ days to try to get relief from increased shortness of breath. Of course, the perceived benefits of O2 are not unique to patients with IPF. In a study conducted by Goldbart et al13 that focused on perspectives of patients with COPD and their ICs, patients perceived beneficial effects of O2 that included increased physical activity, confidence and independence, and ICs perceived that O2 led to improved QOL in their patient-loved ones. In our study, ICs comments on O2 were predominantly negative: they saw their patient-loved ones tethered to their O2 sources, unable—or more often, unwilling—to stray far from home or for too long a time. Their comments likely stemmed from their perceptions of how O2 imposed adjustments to—and limitations on—their own physical and social activities. Supplemental O2 had the effect of shrinking both patients’ and ICs’ worlds, thus validating the concerns of ICs whose loved ones had not yet been prescribed O2. As Cullen and Stiffler14 have described, patients with chronic respiratory conditions must “negotiate lifestyle interference and physical restrictions” caused by O2. In many ways, not only the patient but the entire household must negotiate the interference and restrictions of O2; it became clear in our study that ICs must also ‘adapt oxygen to life's circumstances’ and figure out how to ‘live in a restricted world.’14
For ICs, there was an emotional cost to living in this restricted world: ours expressed disbelief and devastation at finding out their life partner had an untreatable disease; anger at the overall situation; helplessness because of their inability to relieve their spouses’ suffering; fear of the inevitable progression of IPF; and sadness knowing that their partner may live only a few more years (or months). In some cases, the emotional weight on ICs manifested as resentment towards patients.
These findings are not unique to ICs of patients with IPF: Garlo et al15 remind us that people caring for adults with chronic conditions—cancer, heart failure, COPD—experience similar burdens regardless of the patient's illness or disability. How much strain or burden an IC experiences—and the extent to which these negatively impact the physical and emotional well-being of an IC—depends on a number of IC and patient-loved one-related factors, and the complex interplay among them.15 ,16 Female ICs appear to experience greater burden than male ICs, even when providing a similar level of care.17 ,18 An IC's or patient's psychological state by and large predicts his own QOL; however, psychological distress in an IC will negatively impact a patient's QOL and vice versa.19 And it gets even more complex: when a female IC perceives that she is experiencing vastly more emotional stress over the situation than her male patient-spouse, she may sense emotional abandonment. The same is not true for male ICs.18
As we observed in our study, ICs (and other family members) of patients with terminal illnesses make significant life changes and sacrifices to care for their patient-loved ones.20 How great those changes and sacrifices need to be, and particularly how well they are accepted and the ease with which they are integrated into an IC's lifestyle, are factors that impact IC strain. Indeed, a growing cache of data suggest that an IC's psychological response to his role as caregiver—rather than the number or difficulty of the tasks they perform to care for their patient-loved one—is a major determinant of IC strain.15 Strain creates emotional distress, impairs physical functioning and decreases social contacts among ICs16; moreover, IC strain or burden predicts increased distress in patient-loved ones.21
ICs are at risk for anxiety and depression; this partly depends on the severity of disease in patient-loved ones, but it also depends on ICs’ own physical health states.22 ICs with physical ailments—as may occur in the typically older-than-middle-aged group of ICs who care for patients with IPF—are at increased risk for mood disturbance.22 Not surprisingly, IC anxiety and depression are linked to ICs’ perceptions of strain and burden.
Patient-loved one-factors also affect IC strain or burden. Breathlessness is a particularly distressing symptom for ICs to deal with,23 ,24 and has been linked to impaired QOL among ICs of patients with cancer or COPD.25 In agreement with Malik et al,24 our data revealed that a patient's struggle to breathe causes in ICs “limitations to shared activities and social life, a loss of companionship, increased feelings of responsibility and helplessness because of their inability to control their loved ones’ breathlessness.”
This study has limitations. All ICs were partners of patients evaluated at our centre, a quaternary referral centre, and only one was a man; thus, we must consider the possibility that the views of the ICs we enrolled are not fully representative of ICs of patients with IPF in the general population. However, in this largest sample of ICs of patients with IPF ever studied, the external validity of results is supported by the finding that the themes we uncovered overlapped with those from a study published previously.12 Importantly, new themes, not reported by other investigators, also emerged from our sample. We did not set out to determine the needs of ICs to develop an intervention for them, per se, although clearly they have needs that are unmet. In our conceptual framework, we describe interventions that may address some of those needs, but this is an area ripe for additional research. In a recently published manuscript, Byrne et al26 described a protocol for a study aimed at developing a strategy for providing palliative care for patients with IPF and their ICs. The results of that study are eagerly anticipated and will likely prove extremely helpful for ICs of patients with this devastating disease.
In summary, we conducted focus groups with ICs of patients with IPF and learned from them that patients with IPF struggle to find the balance between desperately wanting to live a normal, active life—to maintain their independence—and yielding to a disease that forces them to rely on supplemental oxygen as well as on their ICs’ emotional and, often, physical support. Meanwhile, ICs struggle to find balance between providing that support and maintaining their own emotional and physical well-being, freedom and identity. Our suggestions for easing this struggle include establishing IC support groups as a standardised component of care; ensuring that ICs have access to respite so they have time to recharge and maintain their own physical and emotional health; developing an IPF IC-specific educational curriculum that covers topics such as symptoms to expect, how to handle new symptoms/stages of the disease, coping, etc; and encouraging ICs to develop and maintain a support network. We suspect interventions like these would prevent ICs from feeling isolated and overwhelmed, while fostering development of a more confident, competent and informed caregiver.