CC16
Patients, Partners and Children's Experiences Related to Need for Support and Information When a Parent Is Diagnosed with Multiple Sclerosis
A chronic neurological disease like multiple sclerosis (MS), which debuts in the years when individuals are most likely to be parent of dependent children, affects the whole family and has a substantial impact on the children. Traditionally, health care professional focus soley on the patient although there is a need to be aware also of a child’s special needs when a parent is diagnosed with MS. Research has mainly explored the impact of a parent’s disease on children. Knowledge on what kind of support and suitable interventions for these children and their parents need are thus limited.
Objectives:
The aim was to gain an understanding of how health care can support empowerment in children when a parent is diagnosed with MS. The study explores needs and desires when a parent is diagnosed with MS from a triple perspective; the ill parent, the healthy parent and the children. Questions about what they experienced as important issues to acknowledge and act upon to make it easier for a child to cope were raised.
Methods:
A qualitative study design using content analysis with an inductive approach was used. Nine focus group interviews were conducted with ill parents, healthy parents and children separately.
Results:
The results describe how a parent with MS, their partners and children look upon their need for information and support. They jointly indicated the need to recognize all family members as one member’s illness affects them all, both initially and onwards. Both ill and healthy parents wished for support from health care professionals in addressing their children’s needs.
Children described their need for information and support both directly from health care and from a parent. Adequate information, provided with receptiveness, creates a base for the individual as well as for the family to cope with the situation. Well-informed parents can support their children and contribute to an atmosphere where questions are easier to raise.
Conclusions:
Health care professionals need to pay attention to children as patients’ next of kin. 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 as parents may need reassurance and can benefit from advice about how to talk to their children about their condition and its impact on family life.