"Vad gör man inte för sina nära och kära" : Närståendes erfarenheter av att leva med en person med multipel skleros

Sammanfattning

Introduction: Multiple sclerosis is a neurological chronic disorder with a wide range of symptoms, depending on which part of the central nervous system is affected. The disease often debuts during adulthood, and previous research shows that it can impact individuals' health-related quality of life. The need for support from close relatives is of great importance, which can in turn affect the psychological well-being of close relatives. Aim: The aim of this study was to explore the experiences of close relatives living with and providing support to a person with multiple sclerosis. Method: The study has a descriptive design with a qualitative approach. Data were collected through semi-structured interviews conducted via video meetings. Participants were recruited through a closed Facebook group. The data were analyzed using qualitative content analysis with an inductive approach. Results: In total, seven individuals participated. The results indicated that the disease had a varying impact on close relatives' lives, including work, family life, and leisure activities. A pervasive sense of worry characterized their everyday lives. The participants expressed a lack of information, support, and opportunities for involvement from healthcare services. Consequently, they sought support from other close relatives in similar situations or people in their close network for support. Conclusion: Close relatives of individuals with multiple sclerosis expressed a desire for support from healthcare services to better navigate their situations. A person-centered and familyfocused approach within healthcare services can contribute to increased involvement and improved well-being for both the close relatives and the individual with multiple sclerosis.