Adolescents' experiences on coping with parental multiple sclerosis: a grounded theory study

Aims and objectives: To gain insight into what adolescents see as their main concern when having parents who suffer from multiple sclerosis, and develop concepts and theory that may explain how they cope with this concern.

Background: Health professionals have a special responsibility towards children of parents with chronic diseases, including multiple sclerosis. Few studies show the perspective of the adolescents themselves, and point out that further knowledge is needed. Previous research supports the need for intervention at a youth, parent and family level.

Design: Grounded theory.

Methods: We used grounded theory with a generative and constant comparative approach. Data were collected through fifteen individual semi-structured interviews with adolescents aged 12-18 years who had a parent diagnosed with multiple sclerosis.

Results: The adolescents' main concern was identified to be preserving control in an uncertain everyday life. This concern was resolved by 'balancing needs', implying the pattern of (1) reflecting, (2) adjusting, (3) taking responsibility and (4) seeking respite. These were used interchangeably in the adolescents' effort to solve their main concern.

Conclusion: Openness within the family and outwards to the network, is essential for the well-being of the adolescents, and relies on knowledge about the disease, family functioning and support from health professionals. Thus, long-term intervention programs offering information and guidance should be offered.

Relevance to clinical practice: Understanding the impact of multiple sclerosis on the family from the perspective of the adolescents, gives a basis for health professionals when planning the best possible support for these adolescents. School nurses may play an active role in ensuring a high quality of this work.