Sunday, 4 March 2012

Having MS and being a parent: are there problems?

Pakenham et al. Parenting difficulties and resources: The perspectives of parents with multiple sclerosis and their partners. Rehabil Psychol. 2012 Feb;57(1):52-60. 


Objective: 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. 

Method: 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 MS'ers 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. 

Results: 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. 

Conclusions: 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.


"Although this work is preliminary and very soft it does raise the issue of how MS affects the family and in particular children of MS'ers. I have had concerns about this issue for decades and have done little to address it apart from handout literature from various sources on being a parent with MS and information to teach children about MS."

"This is very timely as I have just asked Alison Thomson in our group as part of our outpatient experience project to include a component that addresses the needs of children of MS'ers. If any of you have any feedback or ideas on this topic please let us know about it?"

"As we start to explore MS prevention strategies engaging in children of MS'ers becomes very important. We will need their help to for our Predict-MS and eventually our Prevent-MS studies."

3 comments:

  1. My mother had MS. She is no longer with us but I know how hard it was as kids to cope with her illness. I often wondered why after her diagnosis she chose to have us because we basically grew up to be carers.

    ReplyDelete
  2. CCSVI is the way forward for MS 30,000 worldwide have now had UK is way behind !

    ReplyDelete
  3. Anon: talk about the blind leading the blind; if CCSVI cured MS we would know about it by now. It doesn't take 30,000 procedures to show it works.

    CCSVI is a myth; a big scam to fleece poor unsuspecting sufferers of hard earned money. Anon, you should be ashamed of yourself for promoting a scam.

    ReplyDelete

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