Elsevier

Applied Nursing Research

Volume 28, Issue 4, November 2015, Pages 322-327
Applied Nursing Research

Original Article
To adjust and endure: a qualitative study of symptom burden in older people with multimorbidity

https://doi.org/10.1016/j.apnr.2015.03.008Get rights and content

Abstract

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.

Introduction

Chronic diseases tend to increase with old age, and approximately 70% of people aged above 80 years have been reported to suffer from multi-morbidity (Boeckxstaens & De Graaf, 2011). For community-dwelling older people with chronic diseases life is filled with challenges as they try to manage everyday life and cope with symptoms of different origins. Multi-morbidity is a condition that may cause loss of autonomy, disability, social isolation (Falk, Ekman, Anderson, Fu, & Granger, 2013) and frailty (Le Reste et al., 2013) if the diseases are not well managed. Even so, research has shown that older people tend to report fewer symptoms compared to younger people (Goldberg et al., 2010). It might be because it is more difficult for older people to detect and interpret symptoms (Riegel et al., 2010), or that older people might fail to recognize and report significance changes in health status as a result of the new signs or symptoms being covered by other chronic diseases (Bender, 1992). Older people with symptoms that are well managed are more likely to feel safe, in control and to experience good health (Ebrahimi, Wilhelmson, Eklund, Moore, & Jakobsson, 2013). A challenge for the health care system is to organize and provide care that is individualized and that focuses on the whole person rather than on separate health issues (McEvoy & Duffy, 2008). A holistic approach could help researchers and clinicians to identify resources and barriers relevant to the management of similar and unique symptoms that cause problems in the everyday lives of older community-dwelling people with multi-morbidity.

Older people with advanced chronic diseases are known to suffer from symptoms such as pain, lack of energy/fatigue, shortness of breath and loss of appetite (Wajnberg et al., 2013, Walke et al., 2006). However, the way a symptom is perceived is a unique experience, and a lack of symptom control may result in significant deterioration of health-related quality of life (Newcomb, 2010). Symptom burden is defined as “the subjective, quantifiable prevalence, frequency, and severity of symptoms placing a physiologic burden on patients and producing multiple negative, physical, and emotional patient responses” (Gapstur, 2007). Symptom burden is often used to describe the sum of symptom scores or the mean number of symptoms per person (Gill, Chakraborty, & Selby, 2012), and could serve as a sensitive target for intervention, particularly to improve outcomes related to quality of life in older people (Sheppard et al., 2013). However, there is no consensus on what level indicates a severe or a very severe symptom burden, nor on the experience and impact of symptom scores (Gill et al., 2012). The experiences of symptom burden in community-dwelling older people with chronic diseases have been reported by use of different symptom assessment scales (Eckerblad et al., 2015, Salanitro et al., 2012, Walke et al., 2006), but subjective descriptions of the older people's own experiences are scarce (Gill et al., 2012). Therefore, 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.

Section snippets

Design

A qualitative study based on semi-structured interviews with 20 older people with multi-morbidity, was performed by using content analysis. The participants in this study were recruited from a prospective single center randomized controlled trial with 382 older people (Mazya et al., 2013). The study followed the ethical guidelines given in the Declaration of Helsinki and was approved by the Linkoping local ethical Committee (Dnr 2012/244-32).

Participants and procedure

We sought a purposive sample with participants that

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 that diseases and conditions are possible to treat or improve, and should challenge the ageist belief that old age causes illness. Symptoms should be communicated by health care providers, focusing on the total symptom experience and impact, taking both barriers as well as resources into consideration.

Disclosures and acknowledgments

We hereby confirm that no conflicts of interest are associated with this publication and no significant financial support for these studies has influenced its outcome. Ethical approval has been obtained, and this approval is acknowledged within the manuscript. The manuscript has been read and approved by all authors named therein. We especially thank the respondents in this study for sharing their experiences of living with a high symptom burden. Original funding was provided by the Faculty of

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