‘The intruder’: spouses’ narratives about life with a chronically ill partner

AIM: The aim of this study was to illuminate the meaning of middle-aged spouse's experiences of living with a chronically ill partner. A purposive sample of four female spouses was selected for interviews using a narrative approach. BACKGROUND: When someone is diagnosed with a chronic illness, it is easy to understand that a considerable number of devastating consequences follow, both for the afflicted as well as for the family. Families often feel neglected and that their problems and needs are underestimated, if they do not personally draw attention to this fact. METHODS: A phenomenological hermeneutic method, inspired by the philosophy of Ricoeur, was used when interpreting the interview text. RESULTS: The experiences of spouses living with a chronically ill partner often brought a feeling of detachment from their partner's lives. The women experienced changes in their relationships because of their partners' disabilities; they had emotions of loneliness, despite living together as a couple. Through their actions, the women sought reassurance and support in order to maintain a meaningful partnership with their spouses and this is expressed in three themes: feelings of limitation, the struggle of everyday life and a striving for normalization. CONCLUSIONS: Middle-aged women living with a chronically sick partner are still of an active disposition and regard themselves as still being in mid-life. They wish to be loved as a wife and not as a care provider. RELEVANCE TO CLINICAL PRACTICE: The findings from this study can help increase the knowledge and understanding of the problems and concerns encountered by middle-aged spouses living with chronically ill partners and can be useful in the education and supervision of nurses and in relationship with relatives.