Living with parental multiple sclerosis: children's experiences and clinical implications

Health professionals need to understand how chronic illness affects all family members.

This study explored the everyday experiences of children who have a parent with multiple sclerosis.

Exploratory, semi-structured interviews were conducted with eight Queensland children, aged 7 to 14 years. Videotapes were transcribed verbatim and analysed inductively.

Themes were labelled changing roles and responsibilities, emotional impact, and things that helped. Participants described taking on additional roles and responsibilities that restricted their participation in developmentally appropriate occupations, the emotional and practical impact of having a parent with MS and different methods they employed to cope with this impact.

The findings emphasise the need for therapists to look beyond the diagnosed individual and see MS as a chronic illness affecting the whole family. Occupational therapists might assist parents and children to maintain their occupations through the provision of appropriate interventions and connection to referral networks.