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: 1.88). 01/2008; 6(4):273-9. DOI: 10.1016/j.ejcnurse.2007.01.097
Source: PubMed


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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    • "Although the HF scientific literature describes caregiving experiences in the context of caregivers’ burden and strain,[671213] conversely few studies adopt an interventional program to reduce the caregivers’ burden in the caregiving situation. The literature on interventions to reduce the negative consequences of caregiving suggests six distinct types of interventions for caregivers: psychoeducational intervention, supportive intervention, respite/adult day care, psychotherapy, interventions to improve care receiver competence, and multicomponent interventions.[14] "
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    ABSTRACT: Background: Living with heart failure patients is a complex situation for family caregivers. Few studies have been conducted to examine the effects of interventional programs to ease this condition. The purpose of this study was to determine the effectiveness of a supportive educative group intervention in reducing family caregivers’ burden of caregiving. Materials and Methods: This randomized clinical trail was conducted at a selective teaching hospital in Isfahan, Iran in 2012. The intervention consisted of four weekly multimedia training sessions of 2 h that included education and family support for 50 family caregivers. Caregiver burden was measured using the Zarit Burden Interview (ZBI). Paired t-test, Student's t-tests, and repeated measures analysis of variance (ANOVA) were used to test for significant differences of the mean scores of burden between the intervention and control groups over a 3-month period. Results: The intervention was successful in reducing caregiver burden over time both at the end of the intervention period (P = 0.000) and 3 months after the intervention (P = 0.000). Conclusions: Nurses and other healthcare providers can use the findings of this study in order to implement effective programs to reduce family caregivers’ challenges and to provide them more support.
    Iranian journal of nursing and midwifery research 05/2014; 19(3):217-23.
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    • "These concerns feature strongly in international experience [11,18-20] and reflects experience in Australia too. We have interpreted these as relevant to the needs, wants and preferences of patients in the belief that these influence health services and the level of care that patients receive [21]. "
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    ABSTRACT: The Wagner Model provides a framework that can help to facilitate health system transition towards a chronic care oriented model. Drawing on elements of this framework as well as health policy related to patient centred care, we describe the health needs of patients with chronic illness and compare these with services which should ideally be provided by a patient-centred health system. This paper aims to increase understanding of the challenges faced by chronically ill patients and family carers in relation to their experiences with the health care system and health service providers. We interviewed patients, carers and health care professionals (HCPs) about the challenges faced by people living with complicated diabetes, chronic heart failure or chronic obstructive pulmonary disease. Patients indicated that they had a range of concerns related to the quality of health care encounters with health care professionals (HCPs), with these concerns being expressed as needs or wants. These included: 1) the need for improved communication and information delivery on the part of HCPs; 2) well organised health services and reduced waiting times to see HCPs; 3) help with self care; 4) greater recognition among professionals of the need for holistic and continuing care; and 5) inclusion of patients and carers in the decision making processes. In order to address the challenges faced by people with chronic illness, health policy must be more closely aligned with the identified needs and wants of people affected by chronic illness than is currently the case.
    BMC Health Services Research 07/2013; 13(1):251. DOI:10.1186/1472-6963-13-251 · 1.71 Impact Factor
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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 · 2.90 Impact Factor
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