The life situation of patients with heart failure in primary health care. An explorative and interventional study

Abstract

The general aim of this thesis was to obtain a deeper understanding of the life situation of patients with mild to severe heart failure and their spouses, and to determine the effects of a nurse-led intervention on patients with heart failure in primary health care. A phe-nomenographic approach was used to describe how male (N=12) and female (N=12) patients with heart failure conceive their life situa-tion (I, II), and the critical incident technique was used to describe spousal (N=23) experience of factors that influence their support of the patient with heart failure.(III) A study of patients (n=48) and spouses (n=48) was conducted to compare their levels of depression and health-related quality of life, and to identify those factors that contribute to depression and health-related quality of life in patient-spouse pairs.(IV) Finally, 153 patients from eight primary health care districts were matched using a randomised block design to either a control (n=75) or an intervention group (n=78) to determine the effects of a nurse-led intervention on patients with heart failure in the primary health care setting regarding life satisfaction, health-related quality of life, and depression.(V) Men with heart failure conceived that the physical limitations caused by heart failure restricted the way they lived and that they were continually reminded of this in their everyday lives. They also experienced social restrictions in their work and leisure activities, hindering them from taking part in activities that previously had been a natural part of their lives.(I) Women with heart failure also described physical and social restrictions due to lack of energy. Difficulties in performing household tasks and providing support as usual to those close to them were difficult things to accept.(II) When spouses of patients with heart failure were given attention and treated like valued individuals, they experienced a sense of involvement with others. In these cases, spouses had someone to turn to and were included in the care. In contrast, when spouses were kept at a distance by the patient, were socially isolated, and received insufficient support from children, friends, and health care professionals, they felt like outsiders.(III) Patients with heart failure were significantly more depressed and had poorer physical quality of life compared to spouses.(IV) Patient depression was correlated with the patient's own functional status and mental quality of life, with the combination of the six-minute walk distance and mental health-related quality of life contributing 51% of the variance in patient depression. Spousal depression and health-related quality of life did not significantly influence patient depression. The mental component of spousal health-related quality of life and the age of the patient accounted for 33% of the adjusted variance in spousal depression. The nurse-led intervention in primary health care (V) showed a limited difference in effect between the groups, with significant differences in the socio-economic and physical dimensions, as well as in depression. In comparisons within groups at the 3- and 12-month follow-ups, the intervention group, particularly the women, maintained their life satisfaction, their health-related quality of life, and their subjective experience of depression to a significanly greater extent than in the control group. Findings from both an inside and an outside perspective obtained from this thesis suggest that caring for elderly patients with heart failure involves taking the family situation, gender differences and diverse experiences in living with a chronic illness into consideration. Heart failure limits the life situation of elderly male and female patients in a very similar manner, but there are a number of differences in how the situation is managed, with women having more feelings of being a burden to those around them, and men having more feelings of resignation. By given spouses insufficient support, the fact that they can be an asset in the care of patients with heart failure is often overlooked. The findings further demonstrate that an intervention directed by primary health care nurses with special training in heart failure can have a positive impact on the life situation and the health-related quality of life of these patients.