A family matter--when a parent is diagnosed with multiple sclerosis. A qualitative study.

Abstract

The aim was to explore and describe from a triple perspective--that of the ill parent, the healthy parent and the children--experienced issues that are important to acknowledge and act upon to make it easier for a child to cope when a parent is diagnosed with multiple sclerosis. A chronic disease affects the whole family and has a substantial impact on the children. Traditionally, the focus is on the patient, and communication with other family members is not generally integrated into health care. Health care professionals need to be aware of a child's needs when a parent is diagnosed with multiple sclerosis. A qualitative design using content analysis with an inductive approach was used. Nine focus group interviews were conducted with the ill parents, the healthy parents and the children separately. Participants jointly indicated that family members need to be recognised, both initially and onwards in their everyday lives. Seven categories were defined: Prerequisites within the families, Initial reactions, Trying to adapt and manage, Developing strategies, Everyday life, Thoughts about the future and Support from health care providers. Together they constituted the theme that multiple sclerosis is a family matter. Both ill and healthy parents wished for support from health care professionals in addressing their children's needs. Health care professionals need to pay attention to children as a parent's illness affects them. Not only the children would benefit, but so would their parents, as their worries for their children would be reduced. Staff can be advised to pay attention to the parenting role, how the parenting role and parent-child relationship may change as a result of a chronic disease. Parents may need reassurance and benefit from advice about how to talk to their children about their condition and its impact.