The palliative care needs of patients with idiopathic pulmonary fibrosis: A qualitative study of patients and family caregivers

Abstract

Objectives To explore the perceptions of palliative care (PC) needs in patients with idiopathic pulmonary fibrosis (IPF) and their caregivers. Background IPF carries a poor prognosis with most patients succumbing to their illness at a rate comparable to aggressive cancers. No prior studies have comprehensively explored perceptions of PC needs from those currently living with the disease, caring for someone living with the disease, and who cared for a deceased family member. Methods Thematic analysis of focus group content was obtained from thirteen participants. Results Four themes described frustration with the diagnostic process and education received, overwhelming symptom burden, hesitance to engage in advance care planning, and comfort in receiving care from pulmonary specialty center because of resources. Conclusions Findings support that patients and caregivers have informational needs and high symptom burden, but limited understanding of the potential benefits of PC. Future studies are needed to identify optimal ways to introduce early PC.

A narrative literature review of palliative care regarding patients with idiopathic pulmonary fibrosis

“…Characteristics of the existing studies are summarized in Table . Countries where the studies were conducted were the UK, (Bajwah et al., , ; Duck et al., ; Sampson, Gill, Harrison, Nelson, & Byrne, ; Sharp et al., ), the USA (Liang et al., ; Lindell, Kavalieratos, Gibson, Tycon, & Rosenzweig, ; Lindell et al., , ; Rush, Berger, & Celi, ; Swetz, Carey, & Bundrick, ), Canada (Kalluri, Claveria, Haggag, & Richman‐Eisenstat, ; Kalluri et al., , ; Periyakoil, Skultety, & Sheikh, ), Japan (Arita et al., ), Finland (Rajala et al., ), Denmark (Overgaard et al., ) and Sweden (Ahmadi et al., ). The combined 19 studies comprised 1708 patients and 74 care partners.…”

“…The age range was between 52 and 78 years. The environments where patients received palliative care were home care (Arita et al., ; Bajwah et al., ; Duck et al., ; Kalluri et al., ; Lindell et al., , ; Overgaard et al., ; Periyakoil et al., ; Rajala et al., ; Sampson et al., ; Sharp et al., ; Swetz et al., ), inpatient ward (Arita et al., ; Rush et al., ), intensive care unit (Rajala et al., ), hospice care (Liang et al., ; Lindell et al., ) and outpatient respiratory centres (Ahmadi et al., ; Bajwah et al., ).…”

“…There were five semistructured in‐depth interview studies (Bajwah et al., ; Duck et al., ; Lindell et al., ; Overgaard et al., ; Sampson et al., ).…”

“…Lindell et al. () aimed to explore the perceptions of palliative care needs in patients with IPF and their caregivers. Four themes were identified: frustration with the diagnostic process and education received, overwhelming symptom burden, reluctance to engage in advance care planning and comfort in receiving care from pulmonary specialty centre because of resources.…”

Pulmonary rehabilitation, physical activity, respiratory failure and palliative respiratory care

“…Caregivers of decedents reported symptoms and frustration with education provided more frequently indicating reframing of experience after the patient’s death 81. An observational study of patients and caregivers (Netherlands, Germany) attending information/education days including end-of-life care topics showed most wished to know everything about their condition, and that the information had improved feelings of security, belying clinicians’ concerns of taking away hope 82.…”