A life in the shadow of COPD: Symptom burden, caregiver burden and strategies to manage daily life
Johansson, Helena
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences.
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]
Chronic obstructive pulmonary disease (COPD) is an irreversible obstructive lung disease. In Sweden, 400,000 to 700,000 individuals are affected by this disease, and it is the third most common diagnosis. Among those with COPD, approximately 3% are at Global Initiative for Chronic Obstructive Lung Disease (GOLD) stages III and IV, representing severe disease. Persons affected by COPD have symptoms such as breathing problems, cough, and increased mucus production. The persons affected by COPD and the next of kin have an affected life. The affected person need support from the next of kin and from society. This thesis aimed to identify, describe, and deepen the knowledge around the symptom burden in persons affected by COPD, the caregiver burden of their next of kin, and the need for support. In the work described in this thesis, qualitative interviews were performed with 25 persons affected by COPD in GOLD stages III and IV and 22 of their next of kin. The interviews were analysed using thematic analysis, according to Braun and Clarke. Quantitative data were also collected from 112 affected persons and 71 of their next of kin, which comprised background data, symptom burden scored with Revised Memorial Symptom Assessment Scale (RMSAS), caregiver burden scored with Caregiver Reaction Assessment (CRA), sense of coherence scored with Sense Of Coherence 13 item (SOC13) and support scored with Social Support Questionnaire six items (SSQ6). These quantitative variables were analysed using frequencies, means and independent t-tests. The total data corpus was then compared and contrasted, examining similarities and differences using Teddlie and Tashakkori’s mixed method. Finally, an integrative review of 68 studies was performed, which identified and summarised the support given to persons affected by COPD and their next of kin. Also, the effects of the support given were also identified and summarised. The results showed that those persons affected by COPD have a symptom burden in the form of an altered everyday life. The next of kin experience a caregiver burden in the form of changed roles, putting life on hold, and standing aside. Taken together, the findings show that the person affected by COPD and the next of kin rate the burden in one way but express it slightly differently in their own words. The affected persons and their next of kin need support to handle everyday life. In Sweden, most support is currently in the form of giving information, promoting physical activity, and providing medical treatment, but these do not always have the desired effects. In conclusion, persons affected by COPD and their next of kin wish to have person-centred support, involving face-to-face consultations in the clinic or at home, to minimise the burdens that they face.
Abstract [sv]
KOL är en kronisk, irreversibel obstruktiv lungsjukdom. I Sverige är 400000-700000 personer drabbade. KOL är den tredje vanligaste diagnosen. Cirka tre procent har KOL i stadie III och IV. Personer drabbade av KOL har symtom i form av andningsbesvär, hosta och ökad slemproduktion. Personer drabbade av KOL och deras närstående har ett förändrat liv. De drabbade personerna har ett behov av stöd från närstående och det omgivande samhället. Den här avhandlingens syfte är att identifiera, beskriva och fördjupa kunskapen om symtombördan hos personer drabbade av KOL och vårdgivarbördan hos närstående samt deras behov av stöd. Avhandlingen innehåller kvalitativa intervjuer med 25 personer drabbade av KOL i GOLD stadie III och IV och 22 närstående till de drabbade personerna. Intervjuerna är analyserade med tematisk analys utifrån Braun och Clarke. Data från frågeformulär innehåller bakgrundsinformation, skattning av symtombörda med RMSAS, vårdgivarbörda med CRA, känsla av sammanhang med SOC13 och stöd är skattat med SSQ6. Kvantitativ data via dessa frågeformulär är insamlad från 112 personer drabbade av KOL och 71 närstående. Denna datan är analyserad med frekvens, medelvärden och t-test. Den totala datan, både kvalitativ och kvantitativ, är sedan jämförd och kontrasterad utifrån likheter och skillnader utifrån mixad metod enligt Teddlie och Tashakkori. slu*tligen är en integrativ litteraturstudie genomförd med 68 studier som identifierar och syntetiserar vilket stöd som ges till personer drabbade av KOL och deras närstående. Även effekten av det givna stödet är identifierat och syntetiserat. Resultatet visar att personer drabbade av KOL har en symtombörda i form av ett förändrat liv. De närstående upplever en vårdgivarbörda i form av förändrade roller, att sätta livet på väntan och att stå vid sidan om. All data tillsammans, kvalitativ och kvantitativ, visar att personer drabbade av KOL och deras närstående skattar sin börda på ett sätt via olika frågeformulär och uttrycker det på ett annat sätt med egna ord. Både de drabbade personerna och deras närstående behöver stöd för att hantera sin livssituation. Det vanligaste stödet som ges i dag är i forma av information, fysisk aktivitet och medicinsk behandling och har inte alltid den önskade effekten. slu*tsatsen är att personer drabbade av KOL och deras närstående önskar ett personcentrerat stöd via ett fysiskt möte eller i hemmet för att minska bördan.
Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2024. , p. 68 Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1822
Keywords [en]
Caregiver burden, Chronic obstructive disease, COPD, Next of kin, Sense of coherence, Support, Symptom burden, Person-centred care
Keywords [sv]
KOL, Kronisk obstruktiv, Lungsjukdom, Känsla av sammanhang, Närstående, Vårdgivarbörda, Personcentrerad vård, Stöd, Symtombörda National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-203067DOI: 10.3384/9789179294502ISBN: 9789179294496 (print)ISBN: 9789179294502 (electronic)OAI: oai:DiVA.org:liu-203067DiVA, id: diva2:1854760
Public defence
2024-06-04, Hasselquistsalen, Building 511, Campus US, Linköping, 13:00 (Swedish)
Opponent
fa*gerström, Cecilia, Professor
Faculty of Health and Life Sciences, Linnaeus University, Kalmar; Department of Research, Region Kalmar County, Kalmar.
Supervisors
Berterö, Carina, Professor
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences.
Jonasson, Lise-Lotte, Associate Professor
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Department of Nursing, School of Health and Welfare, Jönköping University.
Available from: 2024-04-26 Created: 2024-04-26 Last updated: 2024-05-07Bibliographically approved 1. To live a life with COPD: the consequences of symptom burden Open this publication in new window or tab >>To live a life with COPD: the consequences of symptom burden Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in West Östergötland, Department of Medical Specialist in Motala. Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden. Background:Chronic obstructive pulmonary disease (COPD) is a prevalent illness that, due to its symptoms and treatment, entails a significant burden for the affected person, and his/her family, health care and private finances. Today, knowledge and understanding are sparse regarding COPD-affected persons’ own lived experiences and about the symptom burden and its effect on their daily life. Due to this knowledge gap the aim of this study was to identify and describe the symptom burden and its effect on daily life in people with COPD, based on their own lived experiences. Subject and method:Eleven males and 14 females in GOLD stages III and IV, in an age range of 58–82 years, were interviewed. An interview guide was used to direct the face-to-face interviews. Data was analyzed with thematic analysis following the six steps according to Braun and Clarke. Results:The results highlighted one theme: an altered everyday life. The altered everyday life leads to a need for support to handle everyday life and for different strategies to live as desired. Persons with COPD need to take each day as it comes and their life is not easy to plan since it depends on how they feel from day to day. Life is handled with several strategies such as breathing techniques, and ways to take care of the home and garden as well as the emotions. Support from the next of kin, society and the health care service is important. Conclusion:This study provides the insight that persons with COPD in stages III and IV have an altered life caused by the symptom burden. They must struggle with strategies to handle everyday life. There is a need of support from the next of kin and society to facilitate daily living, but this support needs to be well-balanced. 2. The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease: A qualitative study Open this publication in new window or tab >>The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease: A qualitative study Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Region Östergötland, Local Health Care Services in West Östergötland, Department of Medical Specialist in Motala. Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Department of Nursing, School of Health and Welfare, Jönköping University, Jönköping, Sweden. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. BACKGROUND: Chronic obstructive pulmonary disease (COPD) is an inflammatory and irreversible lung disease. For next of kin caregiver burden can be a consequence of the situation of being close to a person affected by a chronic disease and in need of help. When there is an imbalance between stressors and resources to cope with the situation, caregiver burden emerges. Knowledge is sparse about how the caregiver burden is experienced by the next of kin. Therefore, the aim of this study is to identify and describe the caregiver burden experienced by next of kin of persons with severe COPD. METHOD: Qualitative interviews with 21 next of kin were conducted. Thematic analysis was used in accordance with the six steps of Braun and Clarke. RESULTS: The next of kin experience caregiver burden as 1) changed roles in daily life 2) putting life on hold 3) to stand aside. The next of kin are in need of support to manage daily life. CONCLUSIONS: The caregiver burden affect the next of kin physically and emotionally. To prevent advance consequences, person-centered care can be used to support the next of kin in the situation. Funding: Region Ostergotland; Forskningsradet i Sydostra Sverige 3. Chronic obstructive pulmonary diseases impact on the affected person and next of kin: A mixed methods study Open this publication in new window or tab >>Chronic obstructive pulmonary diseases impact on the affected person and next of kin: A mixed methods study Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in West Östergötland, Department of Medical Specialist in Motala. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Jonkoping Univ, Sweden. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Objectives Severe chronic obstructive pulmonary disease affects and changes the lives of both affected persons and next of kin. There is a need for support and a sense of coherence to manage the life situation and minimize the symptom and caregiver burden. The aim of this study was to diverge or converge views of symptom burden, caregiver burden, the need for support, and sense of coherence in persons with chronic obstructive pulmonary disease and their next of kin to gain a deeper and broader knowledge and understanding. Methods A mixed methods study with data from interviews and four validated questionnaires from persons affected by chronic obstructive pulmonary disease in GOLD stages III and IV and their next of kin. Results Questionnaires from 112 persons affected by chronic obstructive pulmonary disease, and 71 next of kin, together with 25 and 21 interviews, show that; there is a difference between estimated symptoms and caregiver burden and experiences expressed in their own words. There is also a defect regarding meaningfulness, comprehensibility, and manageability affecting daily life. Symptoms and caregiver burden, together with the sense of coherence, strengthen the need for support. Discussion The complexity of the life situation leads to a need for supportive interventions to strengthen internal and external resources.List of papers
Johansson, Helena
Berterö, Carina
Berg, Katarina
Jonasson, Lise-Lotte
Abstract [en]
Place, publisher, year, edition, pages
Auckland, New Zealand: Dove Medical Press Ltd.(DovePress), 2019 Keywords
chronic obstructive pulmonary disease, symptom burden, daily life, thematic analysis National Category
Clinical Medicine Identifiers
urn:nbn:se:liu:diva-156645 (URN)10.2147/COPD.S192280 (DOI)000467095200002 () Available from: 2019-05-02 Created: 2019-05-02 Last updated: 2024-04-26Bibliographically approvedJohansson, Helena
Berterö, Carina
Jonasson, Lise-Lotte
Berg, Katarina
Abstract [en]
Place, publisher, year, edition, pages
Sage Publications, 2023 Keywords
COPD, Caregiver burden, informal caregiver, interviews, next of kin, thematic analysis National Category
Nursing Identifiers
urn:nbn:se:liu:diva-193249 (URN)10.1177/14799731231168897 (DOI)000969346800001 ()37042067 (PubMedID) Note
Johansson, Helena
Berg, Katarina
Jonasson, Lise-Lotte
Berterö, Carina
Abstract [en]
Place, publisher, year, edition, pages
SAGE PUBLICATIONS LTD, 2023 Keywords
caregiver burden; chronic obstructive pulmonary disease; sense of coherence; support; symptom burden National Category
Public Health, Global Health, Social Medicine and Epidemiology Identifiers
urn:nbn:se:liu:diva-195311 (URN)10.1177/17423953231175971 (DOI)000999932800001 ()37192646 (PubMedID) Available from: 2023-06-20 Created: 2023-06-20 Last updated: 2024-05-02
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