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Women’s experiences of living with chronic obstructive pulmonary disease stage III or IV and the experiences of their close relatives
Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences (HOV).
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Sundsvall: Mid Sweden University , 2023. , p. 103
Series
Mid Sweden University doctoral thesis, ISSN 1652-893X ; 394
Keywords [en]
chronic obstructive pulmonary disease, confirmation, everyday life, experiences, healthcare encounters, health, interviews, lived experience, phenomenological hermeneutics, qualitative content analysis, well-being, women
National Category
Nursing
Identifiers
URN: urn:nbn:se:miun:diva-49909ISBN: 978-91-89786-26-4 (print)OAI: oai:DiVA.org:miun-49909DiVA, id: diva2:1814135
Public defence
2023-12-13, E409, Holmgatan 10, Sundsvall, 10:00 (Swedish)
Opponent
Supervisors
Note

Vid tidpunkten för disputationen var följande delarbeten opublicerade: delarbete 3 inskickat.

At the time of the doctoral defence the following papers were unpublished: paper 3 submitted.

Available from: 2023-11-23 Created: 2023-11-23 Last updated: 2025-09-25Bibliographically approved
List of papers
1. Living with an ever-present breathlessness: Women's experiences of living with chronic obstructive pulmonary disease stage III or IV
Open this publication in new window or tab >>Living with an ever-present breathlessness: Women's experiences of living with chronic obstructive pulmonary disease stage III or IV
2022 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 36, no 4, p. 1064-1073Article in journal (Refereed) Published
Abstract [en]

Background: Living with chronic obstructive pulmonary disease stage III or IV has a major impact on a person's everyday life. This qualitative study focuses on women with chronic obstructive pulmonary disease stage III or IV. Aim: The aim of this study was to describe women's experiences of living with chronic obstructive pulmonary disease stage III or IV. Method: A purposive sample of fifteen women with chronic obstructive pulmonary disease stage III or IV participated in the study. Data were collected through individual semi-structured interviews that were subjected to qualitative content analysis. Findings: One theme was identified, stabilizing an ever-present breathlessness by restoring strength, and three categories are as follows: managing a restricted everyday life as an expert of their illness, being afraid of contracting infections leading to suffocation and suffering and importance of continuous help and support from significant others and digital media. Breathlessness restricted women with chronic obstructive pulmonary disease, living with a body they have to wait for. Managing everyday life was adapted to their limited abilities and energy. This required detailed planning, good knowledge of their breathing and body. Women were afraid of contracting life-threatening infections that caused suffering, especially COVID-19. The fear leads to isolation and digital media was described as an important means of communication. Significant others gave support and help that was practical and emotional. Women with chronic obstructive pulmonary disease experienced lack of continuous help and support from healthcare professionals. Conclusion: Stabilizing an ever-present breathlessness by restoring strength required women with chronic obstructive pulmonary disease stage III or IV to conduct detailed planning to manage everyday life. Being afraid of contracting infections and the consequences of suffocation had increased since the pandemic COVID-19 outbreak, which led to self-isolation and an inactive everyday life. To get help, support and socialize, women used digital media.

Keywords
chronic obstructive lung disease, continuity of patient care, fear, infections, nursing evaluation research, qualitative research, social isolation, social support, suffering, women
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-42108 (URN)10.1111/scs.12998 (DOI)000651791600001 ()34008226 (PubMedID)2-s2.0-85105939539 (Scopus ID)
Available from: 2021-05-28 Created: 2021-05-28 Last updated: 2025-09-25
2. Striving for moments of easier breathing despite being trapped in breathlessness: meanings of feeling well for women with chronic obstructive pulmonary disease stage III or IV
Open this publication in new window or tab >>Striving for moments of easier breathing despite being trapped in breathlessness: meanings of feeling well for women with chronic obstructive pulmonary disease stage III or IV
2023 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 18, no 1, article id 2225937Article in journal (Refereed) Published
Abstract [en]

Background

Living with chronic obstructive pulmonary disease stage III or IV means living an everyday life, severely restricted by breathlessness.

Aim

The aim of this study was to elucidate meanings of feeling well for women with chronic obstructive pulmonary disease stage III or IV.

Method

The study has used a phenomenological hermeneutical design. Individual narrative interviews were conducted with 14 women with chronic obstructive pulmonary disease at stages III or IV.

Results

The results revealed one theme: striving for moments of easier breathing despite being trapped in breathlessness with four subthemes: acting in rhythm with breathing, taking care of oneself, taking advantage of better moments, and being in togetherness in everyday life.

Conclusion

This study shows that women with chronic obstructive pulmonary disease at stages III or IV strived for moments of feeling well despite living with a severe illness. Feeling well meant that when connected to nature, they felt alive, free, and less trapped in breathlessness, which provided a sense of being unconscious of their breathing rhythm. They could do what healthy people tend to take for granted during everyday life. To feel well, the women found it important to receive tailored support from their close relatives.

Place, publisher, year, edition, pages
Taylor & Francis, 2023
Keywords
Chronic obstructive pulmonary disease, feeling well, health, lived experience, individual interviews, phenomenological hermeneutic method, qualitative method, women’s health
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-48732 (URN)10.1080/17482631.2023.2225937 (DOI)001007716400001 ()37331013 (PubMedID)2-s2.0-85163181465 (Scopus ID)
Available from: 2023-06-28 Created: 2023-06-28 Last updated: 2025-09-25Bibliographically approved
3. Being met as a person and not as a diagnosis: meanings of healthcare encounters for women with chronic obstructive pulmonary disease grade III or IV
Open this publication in new window or tab >>Being met as a person and not as a diagnosis: meanings of healthcare encounters for women with chronic obstructive pulmonary disease grade III or IV
2024 (English)In: Health Care for Women International, ISSN 0739-9332, E-ISSN 1096-4665, Vol. 45, no 11, p. 1273-1285Article in journal (Refereed) Published
Abstract [en]

Our study seeks to elucidate meanings of healthcare encounters for women with chronic obstructive pulmonary disease stage III or IV. We conducted 12 narrative interviews which were analyzed using phenomenological hermeneutic interpretation. Our analysis revealed one theme; being met as a person and not as a diagnosis with three subthemes: getting sufficient time and feeling involved in care; fulfillment of personal needs; and experiencing disrespect and injustice. We found that meanings of healthcare encounters center on the expectation of being seen as a person. Feeling disrespected and injust leaves women unsupported and could pose serious health risks.

Place, publisher, year, edition, pages
Routledge, 2024
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-49912 (URN)10.1080/07399332.2024.2310068 (DOI)001159715000001 ()2-s2.0-85184909282 (Scopus ID)
Available from: 2024-02-12 Created: 2023-11-23 Last updated: 2025-09-25Bibliographically approved
4. The Experiences of Close Relatives to Women with Chronic Obstructive Pulmonary Disease Stages III or IV: A Qualitative Study
Open this publication in new window or tab >>The Experiences of Close Relatives to Women with Chronic Obstructive Pulmonary Disease Stages III or IV: A Qualitative Study
2023 (English)In: Nursing Reports, ISSN 2039-439X, E-ISSN 2039-4403, Vol. 13, no 3, p. 982-989Article in journal (Refereed) Published
Abstract [en]

Chronic obstructive pulmonary disease stage III or IV is a progressive and incurable disease. The hallmark of the disease is breathlessness, and it is graded into four different stages, from mild to severe. Living with chronic obstructive pulmonary disease impacts almost every aspect of everyday life for an affected person. As the illness progresses to stages III and IV, the need for support from close relatives increases. The aim of this study was to explore and describe the experiences of close relatives of women with chronic obstructive pulmonary disease stage III or IV and it used qualitative content analysis of individual, semi-structured interviews. Close relatives (n = 9) were interviewed about their experience of being close to a woman with chronic obstructive pulmonary disease stage III or IV. They experienced stress and uncertainty in an unpredictable everyday life. Close relatives supported the women both practically and emotionally and they called for tailored information about the illness, considering it as an essential tool for support. The results highlighted that healthy close relatives had difficulty in understanding the experience of living with chronic obstructive pulmonary, as they take the simple fact of breathing for granted most of the time.

Place, publisher, year, edition, pages
MDPI, 2023
Keywords
chronic illness, close relatives, chronic obstructive pulmonary disease, interviews, qualitative content analysis, support
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-48985 (URN)10.3390/nursrep13030086 (DOI)001072621200001 ()2-s2.0-85172809997 (Scopus ID)
Available from: 2023-08-07 Created: 2023-08-07 Last updated: 2025-09-25Bibliographically approved

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