Parenting difficulties and resources: the perspectives of parents with multiple sclerosis and their partners

The needs of parents affected by multiple sclerosis (MS) have been neglected. Data are required to inform the development of evidenced-based clinical practice, services, and policies that will maximize the parenting capacities of parents with MS and their partners, while at the same time protect the welfare of children. The purpose of this exploratory study was to provide descriptive data on the difficulties and resources associated with parenting with MS.

Qualitative data on parenting difficulties and resources were obtained from parents with MS and their partners in the form of written responses to 2 open-ended questions in a questionnaire survey. A total of 145 parents with MS and 91 partners were recruited through MS societies in Australia; 119 parents with MS and 64 partners provided qualitative data. The data were analyzed using the Leximancer text analysis software.

Ten difficulty themes emerged (ordered from the most to the least strong): activities, time, MS, fatigue, sons, partner, daughters, housework, family, and mood. Some of these difficulties were more closely affiliated with 1 parent, whereas others were shared, affecting both parents. Eight resource themes emerged: school, time, assistance, chores, friends and family, spouse, sons, and driving. Parents with MS and partners accessed common and unique resources.

The complex array of interacting parenting difficulties was mirrored by a similarly multifaceted assortment of resources required to address the parenting difficulties. Findings delineate key interrelated parenting needs that can be targeted by services and policy development.