Approximately 6% of the population is affected by a rare disease. The diagnostic odyssey is significant, and patients and their families can often be left waiting years for a confirmed diagnosis. Additionally, once diagnosis is received, this news can be difficult to understand and will generate many questions and uncertainties. It is psychologically complex.
Despite this, there has not been any published consensus guidelines to advise on the type and extent of psychological support needed by families and caregivers of children affected by a rare disease diagnosis at the time of diagnosis.
We wanted this to change and, with the support of RBW Consulting and a panel of experts, including Rare Minds, conducted a review of the currently available literature in order to produce a consensus statement.
A Consensus Statement of Good Practice
This statement intends to address the unmet need for psychological support, by raising awareness and providing guidance for healthcare and other supporting professionals on the extent and nature of provision needed by parent and caregivers at the time of diagnosis.
These proposed set of recommendations are based on evidence generated from a review of the literature conducted systematically and the consensus of a group of experts. The literature review contained 37 relevant published articles.