Abstract

BackgroundThe number of partners providing informal care for their chronically ill spouse is rising, and they describe their daily life as demanding. The aim of this paper was to describe the partners’ experiences of living with a person with chronic illness and how they manage everyday life.MethodsA descriptive design with a qualitative approach was used. A purposive sample of 16 Swedish partners with a chronically ill spouse were interviewed. The interviews were recorded, transcribed, and analyzed using qualitative content analysis.ResultsFour main themes were identified: ‘Managing challenges in daily life,’ ‘Seeking support and use own capabilities to manage life,’ ‘Appreciating the good parts of life’ and ‘Adapting to constant changes and an uncertain future’. Their experiences of support from formal care providers varied; they expressed the need for more assistance from the health care sector.ConclusionsThe partners experienced many challenges in everyday life when providing informal care for their chronically ill spouse. This affected both their physical and psychological health, as they had limited time for themselves. The partners seemed to receive more support from their informal network than from formal care providers. In handling daily life, the partners balanced demands and resources to identify possibilities to move forward and find meaning in life. This is congruent with theories by Antonovsky, and Folkman and Lazarus that describes meaningfulness and how to handle challenges in everyday life.

Highlights

  • The number of partners providing informal care for their chronically ill spouse is rising, and they describe their daily life as demanding

  • Sample characteristics The participants were all in a long-term relationship and lived together, with the exception of one couple that was married but lived in separate apartments

  • Leisure activities consisted of visiting relatives and friends, going to the cinema or concerts, singing in a choir, doing photography, watching hockey and taking shorter trips

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Summary

Introduction

The number of partners providing informal care for their chronically ill spouse is rising, and they describe their daily life as demanding. The aim of this paper was to describe the partners’ experiences of living with a person with chronic illness and how they manage everyday life. Chronic illness is a long-term condition that often progresses slowly and can seldom be completely cured. Characters of most chronic illnesses include complex causality, a long development period, sometimes without any symptoms, a time with increasing symptoms of illhealth and perhaps functional impairment [2]. Patients with chronic illness such as heart failure, multiple sclerosis and Parkinson’s disease need to manage symptoms, Eriksson et al BMC Public Health (2019) 19:422 duty and obligation. Limited time for own interests [12], negative effects on social life [13, 14], reduced quality of life [15] and experience of psychological distress [16, 17], are some consequences described in the literature

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