Self-care behaviour and daily life experiences in patients with chronic heart failure

Abstract: Chronic heart failure (CHF) is a progressive, complex, clinical syndrome resulting from structural and/or functional cardiac disorders that impair systolic and/or diastolic ventricular function. The dominating clinical symptoms are shortness of breath, fatigue, exercise intolerance and peripheral oedema. This considerably affects physical, psychological and social functions of the individual, often making normal daily life activity difficult. The treatment for CHF is both pharmacological and nonpharmacological. Patient education, support and counselling are important parts of the non-pharmacological treatment and aims among other things to improve self-care behaviour and adherence to the treatment. Thirst is, in clinical practise, a common reason for complaint in patients with CHF. One factor that can cause or aggravate thirst is the recommendation to be restrictive with fluid intake. In international guidelines for CHF treatment, a fluid restriction of 1,5-2L/day is often recommended. However, neither is this recommendation based on scientific evidence, nor has it been investigated if and how such a recommendation affects the patients’ physical and mental health. The overall aim of this thesis was to describe and evaluate self-care behaviour and to describe daily life experiences in patients with CHF, with special reference to fluid intake. The aims of Study I were to: (1) describe self-care with special regard to daily selfweighing and salt and fluid restriction in patients with heart failure in primary health care, during one year of monthly telephone follow-up after a single session education, (2) to describe gender differences in regard to self-care and (3) to investigate if selfcare was associated with health-related quality of life. The study was a subgroup analysis of the interventional group from a larger randomised trial. No changes were found in self-care behaviour throughout the study period. The intervention had no effect on quality of life and no associations were found between quality of life and selfcare behaviour. There were no statistically significant differences between the genders. Study II was a randomised, cross-over trial with the aim to compare the effects of a restrictive to those of a liberal fluid prescription, on quality of life, physical capacity, thirst and hospital admissions, in patients who had improved from NYHA class (III- )IV CHF to a stable condition, without clinical signs of significant fluid overload. There were no significant differences in end-of-intervention between the two fluid prescriptions in quality of life, physical capacity or hospital admission. In sense of thirst and difficulties to adhere to the fluid prescription there were significant between- intervention differences in end-of-intervention in favour of the liberal prescription. Study III was a secondary analysis of the data from study II with the aim to describe the self-reported fluid intake and its effects on body weight, signs and symptoms of CHF, quality of life, physical capacity and thirst in patients with stabilised CHF. The efficacy variables were analysed in relation to the median fluid intake of 19ml/kg bodyweight/day. Patients with an above median fluid intake experienced significantly less thirst and difficulties to adhere to the fluid prescription. Study IV was an interview study with the aim to describe how persons with CHF experience and manage daily life. The interviews were analysed with manifest and latent content analysis. The experience of living with CHF is illuminated by the themes Hindering and Facilitating Forces. The distribution between these themes was equal which can be interpreted as despite the difficulties patients with CHF have, they are capable to create a good life for themselves. The results of this thesis confirm the results from other studies regarding self-care behaviour and the experiences of living with CHF. It is the first study showing that it seems beneficial and safe to recommend a liberal fluid prescription, based on body weight, in stabilised patients with CHF. A liberal fluid intake has favourable effects on thirst and difficulties to adhere to the fluid prescription without any detectable effects on quality of life, physical capacity or morbidity. A larger self-reported fluid intake was not associated with any measurable negative effects on signs and symptoms of CHF, diuretic use, or physical capacity. Thus, a more liberal fluid intake may be advisable in patients with CHF who have been stabilised from an initial unstable clinical state.