Understanding the experiences of caring for a partner with myalgic encephalopathy: a qualitative study of men in Norway

Abstract:

Background: Informal caring is expanding in many countries as populations age. There is a lot of research on how to care responsibilities are experienced by next of kin, but there is little research on men, which is the focus of this study. This specific focus is Myalgic Encephalopathy (ME), which is a condition that often affects women. This means that it is men who often find themselves in a caring role.

Aim: This project aims to explore what it was like for Norwegian men to have a caring role toward a partner with ME and how it affects everyday life.

Method: A qualitative approach was used. Ten semi-structured interviews were conducted, and the participants were recruited from different places in Norway. All were between the ages of 30 to 60 years old and were caring for a partner for several years. To analyze the data, thematic analysis was used, to find different patterns in the data.

Results: A data emerged two main themes and seven under the themes “experiencing the impact of caring for a partner with ME on everyday life “and providing different kinds of support. The experience around the role of caring was influenced by several factors, such as changes in finances and family dynamics as well as accessing formal support. Overall, the mean men felt that being in a caring role meant that life was being put on hold.

Conclusion: Findings from this study help to strengthen previous research. Having a caring role for a sick partner with ME was demanding and greatly affects everyday life. Men found the role of care challenging and it could negatively affect the person psychologically. For most people in a caring role, there was potential for better support both emotionally and financially.

Source: Elise Torp. Understanding the experiences of caring for a partner with myalgic encephalopathy: a qualitative study of men in Norway. M.Sc. Thesis. https://brage.inn.no/inn-xmlui/handle/11250/3019314?locale-attribute=en