Living with Chronic Obstructive Pulmonary Disease Stage III or IV from the Perspective of the Affected Women and Their Close Relatives : A Qualitative Study

Sammanfattning: Living with chronic obstructive pulmonary disease stage III or IV has a major impact on a person's everyday life. The aim of this licentiate thesis was to describe the experiences of women living with chronic obstructive pulmonary disease stage III or IV, as well as the experiences as a close relative to women with chronic obstructive pulmonary disease stage III or IV. In both studies, data were collected through individual, semi-structured interviews. The interview texts were then subjected to qualitative content analysis. A purposive sample of 15 women with either stage III or IV chronic obstructive pulmonary disease stage and a total of 9 close relatives participated in the studies. The findings showed that breathlessness restricted women with chronic obstructive pulmonary disease, to live with a breathing and body which they had to wait for. Stabilizing an ever-present breathlessness by restoring strength helped them manage everyday life and adapt to their limited abilities and energy. This restoration required detailed planning and a good knowledge of their breathing and bodies. Women were afraid of contracting life-threatening infections that would cause suffering. Fear led to isolation, and digital media were described as an important means of communication (I). Close relatives were of major importance to women with chronic obstructive pulmonary disease in their everyday life in terms of being flexible to accommodate the women’s needs. They were flexible, available, and on stand-by. The COVID-19 pandemic was experienced by close relatives as a reinforced threat to women with chronic obstructive pulmonary disease. Close relatives raised awareness of their vulnerability to potentially life-threatening infections, leading them to carefully avoid exposure and thus rely more on digital media. A more sedentary life was one effect of living in a gradually, yet controlled everyday life for close relatives. Women with chronic obstructive pulmonary disease stage III or IV and their close relatives expressed that they lacked continuity, participation, and support from healthcare professionals (I, II). In conclusion, the findings of this licentiate thesis show that women with chronic obstructive pulmonary disease stage III or IV and their close relatives experience both health and suffering in their everyday lives. By gaining understanding and insights into the lives of women with chronic obstructive pulmonary disease, as well as the needs and everyday challenges of their close relatives, better health outcomes can be supported.