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

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 subtheme was "To feel inadequate and limited". Participants reported 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 it is possible to treat or improve.

“Not getting worse” a qualitative study of patients perceptions of treatment goals in patients with heart failure

“…Participants in our focus group were not able to assign a weight to the different categories because they would like to see their life as a complete picture. These findings are consistent with another study in which patients with multimorbidity preferred a holistic approach to their treatment (Eckerblad, Theander, Ekdahl, Jaarsma, & Hellstrom, 2015).…”

Symptom trajectory and symptom burden in older people with multimorbidity, secondary outcome from the RCT AGe‐FIT study

“…Second, the lack of effect of the intervention on symptom burden might be related to underreporting of symptoms by older people. Some symptoms assessed by the MSAS might not have been brought up in discussion by older people themselves since they often assume that old age and symptoms are supposed to go hand in hand (Eckerblad et al 2015a). It has been suggested that old age might cause an age-related response shift in symptoms that cause older people to respond and report symptoms differently than younger people (Riegel et al 2010, Ritchie et al 2014.…”

“…For the individual, a high symptom burden can lead to a feeling of being dependent, dejected, inadequate and limited (Eckerblad et al . ) and it often results in a high caregiver burden (Kuzuya et al . ).…”

“…A high symptom burden might lead to an increased need of health care such as hospitalization, visits to the Emergency Department (Salanitro et al 2012), or admission to a nursing home (Sheppard et al 2013), generating higher healthcare costs (Wolff et al 2002, Condelius et al 2007. For the individual, a high symptom burden can lead to a feeling of being dependent, dejected, inadequate and limited (Eckerblad et al 2015a) and it often results in a high caregiver burden (Kuzuya et al 2011). Approximately, 70% of all people above 80 years have been reported to suffer from multimorbidity (Boeckxstaens & De Graaf 2011).…”

Carga de la enfermedad crónica para los sujetos implicados en el cuidado

“…En cuanto a la carga de síntomas, son comunes las manifestaciones de dolor, fatiga [13], cansancio [14], disnea, náusea, vómito, estreñimiento [15], deshidratación, diarrea, limitación física, falta de energía [16], trastornos del sueño [17], trastornos de la alimentación [18,19] y sufrimiento corporal [20].…”