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To adjust and endure: a qualitative study of symptom burden in older people with multimorbidity
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
Faculty of Health, Science and Technology, Department of Health Sciences, Nursing, Karlstad University, Karlstad, Sweden.
Region Östergötland, Local Health Care Services in Central Östergötland, Department of Geriatric Medicine in Linköping. Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
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2015 (English)In: Applied Nursing Research, ISSN 0897-1897, E-ISSN 1532-8201, Vol. 28, no 4, 322-327 p.Article in journal (Refereed) Published
Abstract [en]

Context Older people with multimorbidity are vulnerable and often suffer from conditions that produce a multiplicity of symptoms and a reduced health-related quality of life. Objectives The aim of this study is to explore the experience of living with a high symptom burden from the perspective of older community-dwelling people with multi-morbidity.

Method A qualitative descriptive design with semi-structured interviews, including 20 community-dwelling older people with multi-morbidity and a high symptom burden. The participants were 79-€“89 years old with a mean of 12 symptoms per person. Data were analyzed using content analyses.

Results The experience of living with a high symptom burden revealed the overall theme, “To adjust and endure” and three sub-themes. The first sub-theme was "To feel inadequate and limited". Participants reported that they no longer had the capacity or the ability to manage, and they felt limited and isolated from friends or family. The second sub-theme was "To feel dependent". This was a new and inconvenient experience; the burden they put on others caused a feeling of guilt. The final sub-theme was "To feel dejected". The strength to manage and control their conditions was gone; the only thing left to do was to sit or lie down and wait for it all to pass.

Conclusion This study highlights the importance of a holistic approach when taking care of older people with multi-morbidity. This approach should employ a broad symptom assessment to reveal diseases and conditions that are possible to treat or improve.

Place, publisher, year, edition, pages
Elsevier, 2015. Vol. 28, no 4, 322-327 p.
Keyword [en]
Multimorbidity, Older people, Symptom burden, Content analysis
National Category
Nursing Gerontology, specializing in Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-122740DOI: 10.1016/j.apnr.2015.03.008ISI: 000366148700012OAI: oai:DiVA.org:liu-122740DiVA: diva2:872485
Available from: 2015-11-19 Created: 2015-11-19 Last updated: 2017-12-01Bibliographically approved
In thesis
1. Symptom burden among people with chronic disease
Open this publication in new window or tab >>Symptom burden among people with chronic disease
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: Chronic diseases tend to increase with old age. Older people with chronic disease are commonly suffering from conditions which produce a multiplicity of symptoms and a decreased health-related quality of life. Nurses have a responsibility to prevent, ease or delay a negative outcome through symptom management, or assist in achieving an acceptable level of symptom relief.

Aim: The overall aim of the thesis was to describe different aspects of symptom burden from the perspective of community-dwelling people with chronic disease.

Methods: This thesis is based upon four papers that used both quantitative and qualitative data to describe different aspects of symptom burden, experienced by people with chronic diseases. Paper (I) is a cross-sectional study with 91 participants diagnosed with chronic obstructive pulmonary disease. Papers (II and IV) are based upon secondary outcome data from a randomized controlled trial with 382 community-dwelling older people with multimorbidity. Paper (II) is a cross-sectional study and Paper (IV) has a descriptive and an explorative design reporting on the trajectory of symptom prevalence and symptom burden. Paper (III) is a qualitative study with participants from the AGe-FIT.

Results: Among people diagnosed with COPD the most prevalent symptoms with the highest symptom burden scores were shortness of breath, dry mouth, cough, sleep problems, and lack of energy, with just a few differences between participants with moderate and severe airflow limitation (I). For older people with multimorbidity, pain was the symptom with the highest prevalence and burden. Other highly prevalent symptoms were lack of energy and a dry mouth. Poor vision, likelihood of depression, and diagnoses of the digestive system were independently related to the total symptom burden score (II). The symptoms experienced by the older people were persistent and the symptom burden remained high over time (IV). The experience of living with a high symptom burden was described as an endless struggle. The analysis revealed an overall theme, “To adjust and endure” and three sub-themes, “to feel inadequate and limited”, “to feel dependent”, and “to feel dejected” (III).

Conclusions: The results of this thesis indicate the importance of early symptom identification. People with chronic diseases have an unmet need for optimized treatment that focuses on the total symptom burden, and not only disease specific symptoms. A large proportion of older people with multimorbidity suffer a high and persistent symptom burden, and the prevalence and trajectory of pain are high. Older people sometimes think their high age is the reason they experience a diversity of symptoms, and they do not always communicate these to their health-care provider.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2015. 97 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1484
Keyword
Symptom experience, Symptom burden, Chronic disease, Community-dwelling
National Category
Gerontology, specializing in Medical and Health Sciences Nursing Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-122742 (URN)10.3384/diss.diva-122742 (DOI)978-91-7685-939-1 (ISBN)
Public defence
2015-12-18, K3, Kåkenhus, Campus Norrköping, Norrköping, 13:00 (Swedish)
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Supervisors
Available from: 2015-11-19 Created: 2015-11-19 Last updated: 2015-11-20Bibliographically approved

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Eckerblad, JeanetteEkdahl, AnneJaarsma, TinyHellström, Iingrid

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