“Is the term ‘fragile optimism‘ something we should be proud of using? The study below looks at the uncertainty that exists around childhood MS and how parents deal with it. The coping strategies parents use to deal with are variable including ‘denial‘ or ‘selective attention‘, i.e. avoid sources of information and support that threatens ‘fragile optimism‘. With the emergence of more effective DMTs the prognosis of MS is so much better, at least in the short and intermediate term, than it was two decades ago. In addition, the innovation machine rolls on and we have to assume things will get even better in the future. For example, the emergence of DMTs for progressive MS. Therefore it is important for healthcare professionals (HCPs) to spread hope, but to do it in a way that is realistic and not in away that creates unrealistic expectations. I personally don’t believe in pulling punches, which is why we try and tell it how it is. At the same time it is important to try and layer the information and allow pwMS. and their parents, to receive information when they are ready to receive it. When I develop the next version of our tube map it is going to fold out, so when you initially see the map, the later stages of MS will be hidden away. I like to use the peeling onion analogy to describe the layering of information; if you peel an onion too quickly you are going to cry.”
“Although this study refers to children with MS, parents never stop worrying, taking responsibility and caring for their children even when they are adults. As a parent myself I totally understand this; it is part of the unconditional love you have for your children. The other day a very concerned mother phoned me for advice about her 30 year daughter; she was concerned that her daughter was not being managed proactively enough and wanted advice. The daughter was not interested in reading about MS or the latest developments in the field, but the mother was. The mother was an active reader of our blog and wanted advice about her daughters treatment and in particular family planning. As I was not responsible for her daughter all I could do was give generic advice. It was clear the mother was very anxious about her daughter and wanted the best outcome.”
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.