Original ArticleTo adjust and endure: a qualitative study of symptom burden in older people with multimorbidity
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
References (41)
- et al.
Health despite frailty: Exploring influences on frail older adults' experiences of health
Geriatric Nursing
(2013) - et al.
Symptom burden in stable COPD patients with moderate or severe airflow limitation
Heart and Lung
(2014) - et al.
Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness
Nurse Education Today
(2004) - et al.
The European General Practice Research Network presents a comprehensive definition of multimorbidity in family medicine and long term care, following a systematic review of relevant literature
Journal of the American Medical Directors Association
(2013) - et al.
The Ambulatory Geriatric Assessment – A Frailty Intervention Trial (AGe-FIT) – A randomised controlled trial aimed to prevent hospital readmissions and functional deterioration in high risk older adults: A study protocol
European Geriatric Medicine
(2013) - et al.
Holistic practice-a concept analysis
Nurse Education in Practice
(2008) - et al.
The Memorial Symptom Assessment Scale: An instrument for the evaluation of symptom prevalence, characteristics and distress
European Journal of Cancer
(1994) - et al.
Symptom burden predicts nursing home admissions among older adults
Journal of Pain and Symptom Management
(2013) - et al.
Symptom assessment in community-dwelling older adults with advanced chronic disease
Journal of Pain and Symptom Management
(2006) The effectiveness and costs of comprehensive geriatric evaluation and management
Critical Reviews in Oncology/Hematology
(2003)
Advanced heart failure: Impact on older patients and informal carers
Journal of Advanced Nursing
Eye on elders: Deceptive distress in the elderly
The American Journal of Nursing Company
Managing threats against control in old age: A narrative inquiry
Nursing Research
Primary care and care for older persons: Position paper of the European Forum for Primary Care
Quality in Primary Care
Self-care behaviours and heart failure: Does experience with symptoms really make a difference?
European Journal of Cardiovascular Nursing
Understanding the will to live in patients nearing death
Psychosomatics
Symptom burden in community-dwelling older people with multimorbidity: A cross-sectional study
BMC Geriatrics
Do those over 80 years of age seek more or less medical help? A qualitative study of health and illness beliefs and behaviour of the oldest old
Sociology of Health & Illness
The qualitative content analysis process
Journal of Advanced Nursing
Older patients' experiences of heart failure-an integrative literature review
Journal of Nursing Scholarship
Cited by (35)
Older patients’ perceptions of the Swedish ambulance service: A qualitative exploratory study
2023, Australasian Emergency CareManaging healthcare conflicts when living with multiple chronic conditions
2021, International Journal of Human Computer StudiesCitation Excerpt :Conflicts require making decisions that involve complex needs and risks. These decisions can be overwhelming, leading people to abstain from trying to control or improve their conditions (Eckerblad et al., 2015). Assistance from Lived Health technology could help to ease this burden, facilitating the process of making decisions when facing conflicts.
Challenged but not threatened: Managing health in advanced age
2019, Social Science and MedicineCitation Excerpt :While these theories highlight individual creative capacity in the face of illness, maintaining biogeographical flow is also invisible, but exhausting, work (von Faber et al., 2016). For those living with multi-morbidity, not being able to make plans or socialise leads to feelings of isolation and loneliness, and not having the ability to control this can lead to feelings of inadequacy (Eckerblad et al., 2015). We must also recognise that loss of control, for example resulting from non-treatment of issues older people perceive as urgent, is a threat to autonomy in advanced age (Elias and Lowton, 2014).
‘The Thing that Really Gets Me Is the Future’: Symptomatology in Older Homeless Adults in the HOPE HOME Study
2018, Journal of Pain and Symptom ManagementCitation Excerpt :Symptom burden causes suffering and is associated with poorer functional status, increased health care utilization, and death.12–14 In older adults, symptom burden is associated with isolation, guilt, and dependency.15 Loneliness is a risk factor for mental health conditions, poor-self-rated health, functional decline, and death.16–18
“Not getting worse” a qualitative study of patients perceptions of treatment goals in patients with heart failure
2018, Applied Nursing Research