An article published in The European Respiratory Journal used a qualitative study design to increase awareness of what it means to live with idiopathic pulmonary fibrosis (IPF), both from the patients’ and caregivers’ perspective. The study, titled “The lived experience with idiopathic pulmonary fibrosis: a qualitative study,” was conducted by researchers at the University of Copenhagen, Denmark, and provided an in-depth look at the specific needs of these patients as their disease progresses along with the burden on their family caregivers.

The use of a qualitative descriptive design allowed the researchers to collect detailed perspectives from the patients and caregivers queried throughout the study timeline.

Through a series of in-depth interviews of 25 patients with IPF and 24 family caregivers, recruited and enrolled from two university specialist hospitals, the researchers analyzed the data and focused on quality of life indicators, including how the patients and caregivers were both accepting and dealing with the disease prognosis as individuals and as couples, and the impact of the disease progression on their life outlook.

The data was analyzed in three distinct levels: the patient, the family caregivers, and the couple level.

After complete analysis of the interview answers, the most prominent findings included:

• Both partners avoided talking of demise and death;
• Patients tried to live as normal a life as possible;
• Family caregivers managed by finding outlets for their frustration at work or among friends;
• Disease symptoms dominated and were interwoven in the life of the patients as well as the family caregivers.

“IPF patients and their family caregivers require information, but dosage and timing should be adjusted to individual needs and progression of disease …” the researchers wrote. “The patient copes by living as normal a life as possible, while caregivers need their own space, both avoiding confrontation with death. A structured approach from the health professionals is recommended along with a plan for palliation at an early stage of the disease.”

“The study suggests a need to involve family caregivers from the onset of disease. Family caregivers are a resource, but also the victims of terminal disease. We need to ensure that the caregivers are supported by others as they support the patient. With the knowledge we have gained, we suggest that the bereaved caregivers are offered a follow-up consultation at the clinic to obtain some kind of closure,” the authors wrote.