Everyday life experiences of spouses of patients who suffer from pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension

INTRODUCTION: Spouses play a crucial role, both physically and psychologically, for patients with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). Our aim was to investigate the spouse's experiences when living with a partner diagnosed with PAH or CTEPH. METHODS: We used a qualitative interview study design based on open-ended questions analysed using qualitative content analysis. RESULTS: 14 spouses were interviewed. Two categories that describe spouses' experiences of dealing with everyday life were identified: “Living in an insecure life situation” and “Providing and receiving information and support”. The experiences reported by the spouses were that their life situation was insecure, and that they had challenges in providing and receiving information and support. Most spouses also wanted and felt a need to be more involved in the care. CONCLUSION: The spouses were only partly satisfied with their life situation. To support the spouse's participation, the PAH/CTEPH team should encourage the patient to bring their spouse along, and offer them the opportunity to participate in the contacts with healthcare and provide information on an individual family perspective.