Living with a spouse with chronic illness – the challenge of balancing demands and resources

Aims and objectives. To describe the partners’ experiences of living with a person with chronic illness and how they manage everyday life. Background. The number of partners providing informal care for their chronically ill spouse is rising, and they describe their daily life as demanding. Design. A descriptive design with a qualitative approach was used. Methods. A purposive sample of 16 partners with a chronically ill spouse were interviewed. The interviews were recorded, transcribed, and analyzed using qualitative content analysis. Results Four main themes were identified: ‘Living with challenges caused by the spouse's disease,’ ‘Seeking support for living with the spouse’s illness,’ ‘Appreciating the good parts of life’ and ‘Adapting to constant changes and an uncertain future.’ The participants rated their health as rather good and had great confidence in their own ability to cope with daily life. Their experiences of support from formal care providers varied; they expressed the need for more assistance from the health care sector. Conclusions. The 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. Relevance to clinical practice. Formal care providers must acknowledge partners' needs, develop evidence-based assessment guidelines, and provide efficient support to partners with a chronically ill spouse.