Supporting the Children - Resources for Families Where One Parent Has MS

Background:

For many years Multiple Sclerosis Limited (MSL) has been aware that children living in families where one parent has multiple sclerosis have a different experience of growing up.

Research has shown that these children are at an increased risk of psychosocial issues and that education regarding positive coping strategies is imperative. Research supports the need for programs that support these children as well as their parents.

MSL annually hold Family Days and a Family Camp. Existing resources  include, "Has Your Mum or Dad Got MS"which clearly explains what MS is and the symptoms. We identified a lack of resources for primary school aged children to go the next step of helping them understand the many changes that occur once their parent is diagnosed with multiple sclerosis and for parents to remain positive in the face of the limitations multiple sclerosis imposes on their parenting.

MSL proposed 3 student projects during 2014 and 2015 to develop additional and updated published and online resources that would enhance children's knowledge and understanding of their parents multiple sclerosis and how it can potentially affect them, as well as strategies for MSL staff to use with parents to encourage a positive approach to parenting. 

Objectives:

To develop resources for use with and by families;

• a program for children aged 6 - 12 who have a parent with MS that supports their emotional adjustment
• an online resource for children
• a program for parents to encourage a positive outlook

Methods:

Partnering with La Trobe University, Melbourne and the Masters of Occupational Therapy Project Based Learning Program, three projects were established and sponsored by the author;

• Understanding MS - A program for Children to explore Emotional Adjustment
• An online resource  (website) for children aged 6 - 12
• A  Positive parenting Resource and associated program

Each student group commenced with literature searches to establish the increased psychosocial risks, specific areas of concern and what strategies, interventions and education would help children cope with the emotions and challenges brought on by parental MS. Common themes from literature were identified and used to develop the program, ensuring the program was research-based and client-centred. Online surveys of parents and liasion with various stakeholders contributed to the resource development.

Results:

‘Changes and Feelings’ ; a single 75-minute group-based session, a booklet, and a subsequent website

'Positive Parenting: Family Matters'; a booklet for parents that promotes healthy and positive family functioning.

Conclusions:

Reducing the risks through therapeutic intervention and education may increase the overall life satisfaction of children and families affected by parental MS. The development of these programs provide therapists with resources that can be utilised to address the identified areas of concern, and provide highly needed intervention to an ‘at-risk’ population group.