RT Journal Article
SR Electronic
T1 Everyday life experiences of spouses of patients who suffer from pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension
JF ERJ Open Research
JO erjor
FD European Respiratory Society
SP 00218-2018
DO 10.1183/23120541.00218-2018
VO 5
IS 1
A1 Ivarsson, Bodil
A1 Sjöberg, Trygve
A1 Hesselstrand, Roger
A1 Rådegran, Göran
A1 Kjellström, Barbro
YR 2019
UL http://openres.ersjournals.com/content/5/1/00218-2018.abstract
AB 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.Spouses of PAH and CTEPH patients have challenges in providing and receiving information. The experiences reported by them are that their life situation is insecure. They request that PAH and CTEPH centres involve relatives to a greater extent. http://ow.ly/Y1N130nrNU9