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.

Reference

Mauseth, T & Hjälmhult, E. Adolescents' experiences on coping with parental multiple sclerosis: a grounded theory study. Journal of Clinical Nursing, doi: 10.1111/jocn.13131