Tools to measure quality of life and carer burden in informal carers of heart failure patients: A narrative review

School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham, UK.
Palliative Medicine (Impact Factor: 2.86). 02/2013; 27(7). DOI: 10.1177/0269216313477179
Source: PubMed

ABSTRACT Background:Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms and frequent admissions to acute care. These challenges compound the demands on caregivers' physical and psychosocial well-being. Alongside the negative impact of being a carer, positive aspects have also been demonstrated; carers describe feelings of shared responsibility of caring with professional carers and the reward of supporting a loved one, which creates a new role in their relationship.Aim:This review explores the dimensions that impact caregiver burden and quality of life in carers of patients with heart failure and highlights both the negative and positive aspects of being an informal carer for heart failure patients.Design:This review followed the processes recommended for a narrative review. Studies identified were selected systematically following the PRISMA guidelines.Data sources:Searches were conducted using the Medical Subject Headings (MeSH) and keywords of the following search engines: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO and Cochrane for literature published until January 2012.Results:Quality assessment of the studies was conducted using quality indicators, and the studies included in this review were categorised as fair or good according to the criteria. Of the 1008 studies initially identified, 16 studies met the inclusion criteria. A thematic synthesis was undertaken, and the following themes were identifiedPerceived carer control;Mental and emotional well-being;Types and impact of caregiving tasks;Impact of patients' physical condition;Impact of age/gender/demographic factors;Positive aspects of caregiving.Conclusions:This review highlights evidence that informal carers supporting patients with heart failure face many challenges impacting their physical and mental well-being. The studies described provide an insight into the individual dimensions that make a carer particularly vulnerable, namely, younger carers, female carers and carers with existing physical and emotional health issues. Additionally, there are external influences that increase risk of burden, including New York Heart Association Score status of the patient, if the patient has had recurrent emergency admissions or has recently been discharged home and the level of social support available to the carer. A further finding from conducting this review is that there are still limited measures of the positive aspects of caregiving.

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Available from: Clare Gardiner, Sep 27, 2015
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    • "In line with findings from other studies [14, 16, 20, 23], 88 % of key relatives reported that they had gotten something positive out of the situation. In particular, 72 % of key relatives mentioned having changed their perception of the meaning of life’s values, while 18 % mentioned an increased sense of strength and courage against adversities. "
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    ABSTRACT: This paper focuses on the psychological benefits of caregiving in key relatives of patients with muscular dystrophies (MD), a group of rare diseases characterized by progressive weakness and restriction of the patient's functional abilities. We describe whether relatives perceived caregiving to be a positive experience and test whether relatives' perceptions vary in relation to their view of the patient as a valued person, the degree of involvement in care, and the level of support provided by social network and professionals. The study sample included 502 key relatives of patients aged 4-25 years, suffering from Duchenne, Becker, or limb-girdle MD, in treatment for at least 6 months to one of the eight participating centers, living with at least one relative aged 18-80 years. Of key relatives, 88 % stated that they had gotten something positive out of the situation, 96 % considered their patients to be sensitive, and 94 % viewed their patients as talented. Positive aspects of caregiving were more recognized by key relatives who were more convinced that the patient was sensitive and who perceived that they received higher level of professional help and psychological social support. These results suggest that most key relatives consider that their caregiving experience has had a positive impact on their lives, despite the practical difficulties of caring for patients with MD. Professionals should help relatives to identify the benefits of caregiving without denying its difficulties. Clinicians themselves should develop positive attitudes towards family involvement in the care of patients with long-term diseases.
    Journal of Neurology 11/2013; 261(1). DOI:10.1007/s00415-013-7176-8 · 3.38 Impact Factor
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    ABSTRACT: Informal caregivers play an important role for persons with heart failure in strengthening medication adherence, encouraging self-care, and identifying deterioration in health status. Caring for a relative with heart failure can affect informal caregivers' well-being and cause caregiver burden. The objective of this study was to explore informal caregivers' experiences and needs when caring for a relative with heart failure living in their own home. The study has a qualitative design with an inductive approach. Interviews were conducted with 14 informal caregivers. Data were analyzed using qualitative content analysis. Two themes emerged: "living in a changed existence" and "struggling and sharing with healthcare." The first theme describes informal caregivers' experiences, needs, and ways of moving forward when living in a changed existence with their relative. Informal caregivers were responsible for the functioning of everyday life, which challenged earlier established roles and lifestyle. They experienced an ever-present uncertainty related to the relative's impending sudden deterioration and to lack of knowledge about the condition. Incongruence was expressed between their own and their relative's understanding and acceptance of the heart failure condition. They also expressed being at peace with their relative and managed to restore new strength and motivation to care. The second theme describes informal caregivers' experiences, needs, and ways in which they handled the healthcare. They felt counted upon but not accounted for, as their care was taken for granted while their need to be seen and acknowledged by healthcare professionals was not met. Informal caregivers experienced an ever-present uncertainty regarding their lack of involvement with healthcare. The lack of involvement with healthcare had a negative impact on the relationship between informal caregivers and their relative due to the mutual loss of important information about changes in medication regimens and the relative's symptoms and well-being. Another cause of negative impact was the lack of opportunity to talk with healthcare professionals about the emotional and relational consequences of heart failure. Healthcare professionals had provided them neither with knowledge on heart failure nor with information on support groups in the municipality. Informal caregivers captured their own mandate through acting as deputies for their relative and claiming their rights of involvement in their relative's healthcare. They also felt confident despite difficult circumstances. The direct access to the medical clinic was a source of relief and they appreciated the contacts with the registered nurses specialized in heart failure. Informal caregivers' own initiatives to participate in meetings were positively received by healthcare professionals. Informal caregivers' daily life involves decisive changes that are experienced as burdensome. They handled their new situations using different strategies to preserve a sense of "self" and of "us." Informal caregivers express a need for more involvement with healthcare professionals, which may facilitate informal caregivers' situation and improve the dyadic congruence in the relation with their relative.
    The Journal of cardiovascular nursing 11/2014; Publish Ahead of Print. DOI:10.1097/JCN.0000000000000210 · 2.05 Impact Factor
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