Living with heart failure; patient and carer perspectives

British Heart Foundation Care and Education Research Group, Department of Health Sciences, Seebohm Rowntree Building Area 4, University of York, York YO10 5DD, England, United Kingdom.
European Journal of Cardiovascular Nursing (Impact Factor: 1.83). 01/2008; 6(4):273-9. DOI: 10.1016/j.ejcnurse.2007.01.097
Source: PubMed

ABSTRACT Patients with heart failure have multiple readmissions to hospital, a poor prognosis and varying quality of life. This paper explores how patients with heart failure and their family carers cope with daily life. 36 patients and 20 family caregivers were interviewed in five centres in the UK. Analysis showed that living with heart failure can be frightening, restrictive and distressing for both patients and their family carers. Patients found most difficulty coping with functional limitation and adapting to living with heart failure, but also reported particular problems due to side effects of medications, co-morbidities and a lack of psychosocial support and rehabilitation services. Those with less socio-economic resources found it harder to cope. Patients from minority ethnic groups held different beliefs about the illness and its treatment, and some had profound problems communicating with health and social care professionals that made managing the disease even more difficult. Caring for a person with heart failure often has a considerable impact on the psychological and physical health of family caregivers. Psychosocial support and rehabilitation services provided at diagnosis and after an acute episode would enable families to better manage living with this syndrome.

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    • "Taking care of patients with heart failure at home leads to dependence on family caregivers and impacts family function, especially the relationships between family members and the integration of family members into broader social networks and the community . It is necessary to develop and evaluate interventions that can improve outcomes for family caregivers (Collins and Swartz, 2011; Pressler et al., 2009; Pattenden et al., 2007). "
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    ABSTRACT: Telehealth care was developed to provide home-based monitoring and support for patients with chronic disease. The positive effects on physical outcome have been reported; however, more evidence is required concerning the effects on family caregivers and family function for heart failure patients transitioning from the hospital to home. To evaluate the effectiveness of nursing-led transitional care combining discharge plans and telehealth care on family caregiver burden, stress mastery and family function in family caregivers of heart failure patients compared to those receiving traditional discharge planning only. This is a quasi-experimental study design. Sixty-three patients with heart failure were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre from May to October 2010. Three families refused to participate in data collection. Thirty families who chose telehealth care after discharge from the hospital to home comprised the experimental group; the others families receiving discharge planning only comprised the comparison group. Telenursing specialist provided the necessary family nursing interventions by 24-h remote monitoring of patients' health condition and counselling by telephone, helping the family caregivers successfully transition from hospital to home. Data on caregiver burden, stress mastery and family function were collected before discharge from the hospital and one month later at home. Effects of group, time, and group×time interaction were analysed using Mixed Model in SPSS (17.0). Family caregivers in both groups had significantly lower burden, higher stress mastery, and better family function at one-month follow-up compared to before discharge. The total score of caregiver burden, stress mastery and family function was significantly improved for the family caregivers in the experimental group compared to the comparison group at posttest. Two subscales of family function-Relationships between family and subsystems and Relationships between family and society were improved in the experimental group compared to the comparison group, but Relationships between family and family members was not different. The results provide evidence that telehealth care combined with discharge planning could reduce family caregiver burden, improve stress mastery, and improve family function during the first 30 days at home after heart failure patients are discharged from the hospital. Telenursing specialists cared caregivers with the concepts of providing transitional care to help them successful cross the critical transition stage.
    International journal of nursing studies 05/2012; 49(10):1230-42. DOI:10.1016/j.ijnurstu.2012.04.013 · 2.25 Impact Factor
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    • "cut-off value of adherent behaviour versus poor adherent behaviour). In addition to being a precipitating factor leading to non-adherence, ADEs as perceived by patients also contribute significantly to the disease burden and a decline in patients' quality of life (Pattenden et al., 2007; Welstand et al., 2009). Thus, from both a clinical and patient perspective there is a need to prevent and detect patient-perceived ADEs at an early stage of routine care, which may lead to enhanced medication safety and wellbeing among HF patients. "
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    ABSTRACT: Identifying patients with heart failure (HF) who are at risk of experiencing symptomatic adverse drug events (ADEs) is important for improving patient care and quality of life. Several demographic and clinical variables have been identified as potential risk factors for ADEs but limited knowledge is available on the impact of HF patients' beliefs and perceptions on their experience of ADEs. The purpose of the study was to identify the relationship between HF patients' illness perception and medication beliefs and self-reported ADEs. A cross-sectional survey was performed between November 2008 and March 2009. One university medical centre, two regional hospitals and 20 general practitioners in the Netherlands participated in the study. 495 patients with HF were included. Patients completed the validated Revised Illness Perception Questionnaire (IPQ-R) and the Beliefs about Medication Questionnaire (BMQ) which collected data on their illness perception and medication beliefs. In addition, data on ADEs as experienced in the previous four weeks were collected through an open-ended question and a symptom checklist. Multivariate logistic regression was performed to identify factors associated with these ADEs. In total, 332 (67%) patients had experienced ADEs in the previous four weeks, of whom 28% reported dry mouth, 27% dizziness and 19% itchiness as the most prevalent. In the adjusted multivariate analysis, disease-related symptoms (illness identity) (OR for 1-5 symptoms 3.57; 95% CI 2.22-5.75, OR for >5 symptoms 7.37; 95% CI 3.44-15.8), and general beliefs about medication overuse (OR 1.07; 95% CI 1.01-1.13) were independently associated with experiencing ADEs, whereas none of the demographic or clinical factors were significant. HF patients who perceive a high number of disease symptoms and have negative medication beliefs are at higher risk of experiencing self-reported ADEs. We suggest that future studies and interventions to improve ADE management should focus on negative medication beliefs and assisting patients in differentiating disease symptoms from ADEs.
    International journal of nursing studies 07/2011; 48(12):1540-50. DOI:10.1016/j.ijnurstu.2011.05.014 · 2.25 Impact Factor
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    • "Pessimistic reactions to physical changes could have a deleterious impact on willingness to exercise as a consequence. Not knowing when they would experience deterioration in health made certain patients feel helpless: " …we don't go anywhere, we've got a wedding invitation and hope to God that things are a wee bit better so that we can go, just to get us out somewhere, you know " (Pattenden, Roberts & Lewin, 2007: 276 "
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    ABSTRACT: Keeping physically active has been shown to bring positive outcomes for patients diagnosed with heart failure (HF). However, a number of individuals with this health problem do not undertake regular exercise. A review of extant qualitative research was conducted to explore what it can tell us about barriers and enablers to physical activity among people with HF. A systematic search, involving electronic databases and endeavors to locate gray literature, was carried out to identify relevant qualitative studies published from 1980 onward. Data from retrieved papers were combined using framework analysis. Papers read in full numbered 32, and 20 were included in the review. Synthesis of results from the 20 studies resulted in 4 main themes: Changing soma, negative emotional response, adjusting to altered status, and interpersonal influences. How individuals responded to their diagnosis and their altered physical status related to their activity levels, as did the degree of encouragement to exercise coming from family, friends, and professionals. These findings can be connected to the theory of behavioral change developed by Bandura, known as social cognitive theory (SCT). SCT may be a useful framework for developing interventions to support patients with HF in undertaking and maintaining regular exercise patterns. Specific components of SCT that practitioners may wish to consider include self-efficacy and outcome expectancies. These were issues referred to in papers for the systematic review that appear to be particularly related to exercise adherence.
    Health Psychology 05/2011; 30(4):401-10. DOI:10.1037/a0022848 · 3.95 Impact Factor
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