Advanced heart failure: impact on older patients and informal carers

Aldred, Hazel; Gott, Merryn; Gariballa, Salah

doi:10.1111/j.1365-2648.2004.03271.x

Cited by 151 publications

(205 citation statements)

References 20 publications

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“…The high symptom burden made it difficult to make plans, and not being able to plan activities and socialize with friends made the participants feel isolated and lonely. Similar findings have been found in a study of older people with heart failure where the impact of unpredictable symptoms led to a rather isolated existence where they had to stay inside the house for most of the time (Aldred et al 2005).…”

Section: Discussion and Recommendationssupporting

confidence: 87%

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

Eckerblad

Theander

Ekdahl

et al. 2015

Applied Nursing Research

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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.

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Section: Discussion and Recommendationssupporting

confidence: 87%

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

Eckerblad

Theander

Ekdahl

et al. 2015

Applied Nursing Research

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show abstract

“…Patients were more likely to use informal language to describe their condition, such as "problems with the heart", "weak heart", "bad heart", "heart trouble", or "only pumping 20%", and very few actually labeled their condition as "heart failure" [49,[59][60][61][62]. Labeling symptoms was also problematic for patients, who frequently used vivid and emotive language to describe their symptom experience, rather than medical terms.…”

Section: Labelsmentioning

confidence: 99%

“…Unpredictable symptom onset prohibited patients from taking holidays or participating in spontaneous activity [60,51]. Increased dependence on family and spouses was a consequence of reduced mobility [72,64,60,69,71,70,65,63].…”

Section: Restrictions and Limitationsmentioning

confidence: 99%

“…Breathlessness and fatigue overshadowed many activities including household chores, hobbies, such as gardening and dancing, and disturbed patients' ability to sleep and maintain normal sexual function [60,51,61,69,68,70,63,62,67,66,71]. Unpredictable symptom onset prohibited patients from taking holidays or participating in spontaneous activity [60,51].…”

Section: Restrictions and Limitationsmentioning

confidence: 99%

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Care-seeking decisions for worsening symptoms in Heart Failure: a qualitative metasynthesis

Ivynian

DiGiacomo

Jha

et al. 2015

Heart, Lung and Circulation

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Purpose: Over 50% of heart failure (HF) patients delay seeking help for worsening symptoms until these reach acute levels and require emergency hospitalisation. This metasynthesis aimed to identify and explore factors influencing timely care-seeking in patients with HF.Methods: Electronic databases searched were Medline, EMBASE and CINAHL. Studies were included if they were peer reviewed journal articles written in English, and reported perspectives of HF patients following qualitative data collection and analysis. Forty articles underwent analysis following the approach of Thomas and Harden. Leventhal's self-regulatory model (SRM) was used to organise the literature.Results: Much of the literature fit within the SRM, however this model did not account for all factors that influence patients' care-seeking for worsening symptoms. Factors not accounted for included patients' appraisals of previous care-seeking experiences, perceived system and provider barriers to accessing care, and the influence of external appraisals. When added to factors already represented in the model, such as misattribution of symptoms, not identifying with HF diagnosis, cognitive status, lack of understanding information provided, adaptation to symptoms, and emotional responses, a more comprehensive account of patients' decision-making was revealed.Implications: This metasynthesis identified factors, as yet unaccounted for, in a prominent model, and has suggested a more comprehensive framework for addressing care-seeking in HF patients. This information can be used to tailor education, communication, and service initiatives to improve HF patients' responses to worsening symptoms, and target those most at risk of delay.

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“…Many caregivers of patients with heart failure felt the need to be available 24 hours a day 34 and therefore gave up social activities. 35,36 Factors Associated With the Negative Impact of Caregiving…”

Section: Caregivers' Perceived Health Status and The Impact Of Caregimentioning

confidence: 99%

Caregiving for Patients With Heart Failure: Impact on Patients’ Families

Hwang

Fleischmann

Howie-Esquivel

et al. 2011

American Journal of Critical Care

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Background Factors that affect the impact of caregiving on patients’ family members who provide care to patients with heart failure have not been adequately addressed. In addition, social support and positive aspects of caregiving have received little attention. Objective To identify factors associated with the impact of caregiving. Methods Self-report data were collected from 76 dyads of patients with heart failure and their family caregivers. Clinical data were obtained from medical records. Results A sense of less family support for caregiving was associated with a higher New York Heart Association class of heart failure, being a nonspousal caregiver, lower caregivers’ perceived control, and less social support. More disruption of caregivers’ schedules was associated with higher class of heart failure, more care tasks, and less social support. Greater impact of caregiving on caregivers’ health was related to more recent patient hospitalization, lower caregivers’ perceived control, and less social support. Nonwhite caregivers and caregivers whose family member had fewer emergency department visits felt more positive about caregiving than did other caregivers. Social support had a moderating effect on the relationship between patients’ comorbid conditions and positive aspects of caregiving. Conclusions Caregiving has both positive and negative effects on family caregivers of patients with heart failure. The findings suggest the need for interventions to increase caregivers’ sense of control and social support. Family caregivers may need additional support immediately after patient hospitalizations to minimize the negative impact of caregiving.

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Advanced heart failure: impact on older patients and informal carers

Cited by 151 publications

References 20 publications

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

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

Care-seeking decisions for worsening symptoms in Heart Failure: a qualitative metasynthesis

Caregiving for Patients With Heart Failure: Impact on Patients’ Families

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