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.

38 Reads
  • Source
    • "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] "
    [Show abstract] [Hide abstract]
    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.
    Full-text · Article · May 2014 · Iranian journal of nursing and midwifery research
    • "Patients perceive difficulty coping with functional limitation but also reported problems due to side effects of medications , comorbidities and a lack of psychosocial support and rehabilitation services. Living with heart failure can be frightening, restrictive and distressing for both patients and their caregiving partners (Pattenden et al. 2007). A caregiver is normally defined as unpaid relatives or friend (Caregiving NAf 2009). "
    [Show abstract] [Hide abstract]
    ABSTRACT: Aims and objectivesTo explore the perceived caring needs in patient–partner dyads affected by heart failure to develop an understanding of potential areas of support.Background Being affected by heart failure has a great impact on both the patient and the partner but until now contemporary care has remained patient focused.DesignA qualitative study design was used.Methods Eight focus group interviews were performed, which included nineteen patients diagnosed with heart failure and their cohabiting partner. Patients were aged between 55–89 years and partners' ages ranged from 48–87 years. Data were analysed using qualitative content analyses.ResultsThe dyads perceived that caring needs could be summarised in two themes ‘Dyads perceive a need for continuous guidance through the different phases of the illness trajectory’ and ‘Dyads perceive a need to share burden and support with each other and others’. The dyads described a need to learn more about heart failure to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital, and having someone who cared about the well-being of the partners was perceived as comforting. Both the patient and the partner need to be present at the clinic visits. Receiving the same information and being able to ask questions reduce insecurity. Meeting others in the same situation and sharing the burden in group sessions were proposed as an opportunity to support each other and others.Conclusions There is a need to improve education and support for patient–partner dyads affected by heart failure.Relevance to clinical practiceThe result shows the importance to provide continuous healthcare contacts throughout the illness trajectory. Furthermore, partners should be included at follow-up, and support groups should be organised so that dyads can meet and support each other.
    No preview · Article · Apr 2014 · Journal of Clinical Nursing
  • Source
    • "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]. "
    [Show abstract] [Hide abstract]
    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.
    Full-text · Article · Jul 2013 · BMC Health Services Research
Show more