'Support the people that support the patients'

Like being hit by a train. That's what it must be like to receive the diagnosis of a fatal disease like idiopathic pulmonary fibrosis (IPF). Apart from the patient, the caregivers of the patient also face a very difficult time. Danish researchers argue for involvement of family caregivers from the onset of disease. By supporting the patients and the family caregivers, health care professionals can guide them through this period of distress. 

Patients with IPF experience a progressive decline in lung function and an increased symptom burden leading to death. Dorthe Overgaard (Metropolitan University College, Copenhagen, Denmark) and colleagues wanted to learn more about the experience of patients and their needs during the disease, and about the burden on family caregivers. They performed a qualitative study using in-depth interviews with 25 Danish IPF patients and family caregivers, to investigate the quality of life of IPF patients and their family caregivers.

‘It is important to ensure that the caregivers are supported by others as they support the patient.’ 

While the diagnosis of IPF is devastating for the patients, special attention should also be given to the caregivers of the patients. The investigation showed that family caregivers observe the patients continuously, and are particularly alert to the overwhelming coughing attacks and spasms the patients suffer from each morning and evening. A worrying result of the study is that family caregivers often feel insecure and alone with the responsibility. Spouses of IPF-patients gradually and tacitly take over the chores as the patients become unable to carry their load. Obviously, this is demanding on top of the emotional strain for the caregiver. In response, the patient feels guilty. 

The investigators conclude that this study suggests a need to involve family caregivers from the moment the diagnosis of IPF has been established. ‘Family caregivers are a resource, but also the victims of this terminal disease. It is important to ensure that the caregivers are supported by others as they support the patient.’ 

Reference
Overgaard D, Kaldan G, Marsaa K, et al. The lived experience with idiopathic pulmonary fibrosis: a qualitative study. Eur Respir J 2016; In press.