Childhood disability is relatively common, estimated to affect around 7% of children in the UK. Nevertheless, caring for a child with medical, social and/or educational needs is not something parents expect or plan for. Parent carers often describe this unanticipated role as ‘an ongoing battle’ to access information and services. The aim of this article is to raise awareness of resources that can support parent carers and their families.
From the beginning parent carers need accurate information about their child’s health and medical condition – what it is and what it means – and ongoing support in developing their understanding, so they can make informed decisions about treatments and therapies. Given that children have widely varying health conditions, and that parent carers and their families will also have a range of different needs and abilities, it is not possible to provide a comprehensive practical guide for professionals that will be relevant to, and meet the needs of, all the families they will encounter. Nevertheless we seek to offer clinicians some useful reflections on how they can support parent carers.
Resources for parents raising a disabled child in the UK (Follow this link if you have an Athens password). Alternatively contact the UHSM Academy Library for a copy of the article or call 0161 291 5778)