Mid Sweden University

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.

This doctoral thesis is in nursing and the overall aim was to explore, describe, and generate knowledge about women’s experiences of living with chronic obstructive pulmonary disease (COPD) stages III or IV, and about the experiences of their close relatives. Living with a serious long-term illness such as COPD profoundly affects a person’s everyday life and thereby their health and well-being. Data have been collected through qualitative individual interviews (I, IV) and narrative interviews (II, III). The interviews have been analyzed via qualitative content analysis (I, IV) and phenomenological hermeneutical interpretation (II, III). The findings show that women with COPD stage III or IV and their close relatives experienced both suffering and moments of health during their everyday lives (I–IV), despite the unpredictability of their severe illness and their ever-present breathlessness (I). Women were the experts of their own illness, managing their everyday lives to enable moments of feeling well (II). In addition, being seen as diagnosis rather than as a person made the women feel ignored by healthcare personnel which influenced their health and well-being in negative way (III). Close relatives experienced difficulties in fully understanding the women’s struggle of living with COPD. In efforts to comprehend their ill health and stress, they must contend with a lack of tailored information and uncertainty while providing practical and emotional support (IV). The findings in this doctoral thesis show that women with COPD stages III or IV were living with an unpredictable ever-present breathlessness that causes suffering in their everyday lives. Despite this woman experienced moments of feeling well. Meanings of healthcare encounters for women with COPD stage III or IV showed that women wished to be seen as a person and not as a diagnosis. Feeling disrespected and unjust leaves women unsupported and could mean serious health risks. Close relatives asked for tailormade information and knowledge to further understand women’s ill health.