Att leva med sjukdomen ALS : En kvalitativ litteraturstudie ur ett patientperspektiv

Sammanfattning: Background: This section includes family and nurses experiences of caring for a person with ALS. Families experience mental and physical stress in caring for a close relative. They describe how their everyday life of caring for a close relative with the disease ALS is and how challenging it can be. Nurses experience a lack of knowledge surrounding the disease and as a result, difficulties in dealing with patients and their families may arise. Both nurses and patients’ families emphasize the importance of knowledge about the disease. Nurses also emphasize the importance they have as health care professionals and their obligation among other things to inform patients families of relief care. Aim: The purpose is to describe patients’ experiences of living with ALS. Method: The method of this thesis is a qualitative literature study and analyzed from a descriptive synthesis based on the synthetic process. Results: The findings present three themes describing patients’ experiences of being stricken with ALS. The three themes presented in the findings are "Experiences of being afflicted with ALS", “Experiences of emotional upheaval by ALS” and "Experiences of bodily changes with ALS”. Conclusion: In the findings of this study patients’ experiences of living with ALS are described. It is of importance that involved healthcare professionals continuously strive for increased knowledge and information about patients’ experiences. High-quality care is one of the many obligations a registered nurse must upkeep. Increased knowledge creates a potential possibility for evolving and better care and thus a better understanding towards patients with ALS. Involving close family and relatives is important when caring for people with ALS, as it facilitates for the well-being and sense of safety of these patients. It is thus important that healthcare professionals also pay attention to the relatives of these patients to support them during the whole process.