Introduction: Recently, our department has executed a focusgroup study to evaluation the preferences and emotions of asthma and COPD patients regarding a patient web portal (PWP). Remarkable was that during these sessions lack of social support from friends, family and colleagues was often mentioned. This led to emotional conversations because it severely effects patients' quality of life. It is striking that this topic is rarely discussed in scientific publications or clinical settings. We would like to draw attention to the lack of social support and empathy experienced by asthma and COPD patients. Method: These are secondary findings from a focus group study in 29 patients. All data was transcribed verbatim and analyzed using grounding theory. Results: Patient citation: “People don't see many signs of illness, but the reality is that I have to deal with my chronic condition on a daily basis” COPD patients have to deal with the stigmatization of a self-inflicting disease. Asthma and COPD patients experience lack of empathy when avoiding triggers (e.g. smoke, allergens). The fluctuating severity of the diseases makes it even worse to understand for bystanders. Lack of social support is experienced from family, colleagues and friends and led to sadness, anger and in some of our patients it has led to social isolation. Conclusion: Health care professionals should pay more attention to this issue. Patients would like to have access to information (booklet/video ect.) specifically for their social network to explain what it means to have asthma or COPD.
|Tijdschrift||European Respiratory Journal|
|Nummer van het tijdschrift||Supplement 60|
|Status||Published - 1-sep.-2016|