"What about the other way round? What about the anxieties children have for a parent with MS? This is one of the reasons we launched our 'Digesting Science' programme to teach young children about MS. The course targets children between 6-12 years of age. I think we may need to extend this programme for teenagers. What do you think? I have so many stories to tell about teenage carers, i.e. children who have taken on the role of looking after and caring for a disabled parent with MS. This post may be all over the place, but it does highlight a problem in the field in relation to education and how we should be providing information."
Hinton & Kirk. Living with uncertainty and hope: A qualitative study exploring parents' experiences of living with childhood multiple sclerosis. Chronic Illn. 2016 Aug 17. pii: 1742395316664959. [Epub]
BACKGROUND: There is growing recognition that multiple sclerosis is a possible, albeit uncommon, diagnosis in childhood. However, very little is known about the experiences of families living with childhood multiple sclerosis and this is the first study to explore this in depth.
OBJECTIVE: Our objective was to explore the experiences of parents of children with multiple sclerosis.
METHODS: Qualitative in-depth interviews with 31 parents using a grounded theory approach were conducted. Parents were sampled and recruited via health service and voluntary sector organisations in the United Kingdom.
RESULTS: Parents' accounts of life with childhood multiple sclerosis were dominated by feelings of uncertainty associated with four sources; diagnostic uncertainty, daily uncertainty, interaction uncertainty and future uncertainty. Parents attempted to manage these uncertainties using specific strategies, which could in turn create further uncertainties about their child's illness. However, over time, ongoing uncertainty appeared to give parents hope for their child's future with multiple sclerosis.
CONCLUSION: Illness-related uncertainties appear to play a role in generating hope among parents of a child with multiple sclerosis. However, this may lead parents to avoid sources of information and support that threatens their fragile optimism. Professionals need to be sensitive to the role hope plays in supporting parental coping with childhood multiple sclerosis.