There is very little available in the literature that focuses on the perspectives of families caring for someone with severe or profound learning disabilities and challenging behaviour.
This ethnographic study aimed to improve understanding of the experiences and perspectives of families, in particular mothers, of young people with these complex needs.
The researcher carried out a series of intensive interviews over a 2 year period, mainly with mothers, along with some participant observation, analysing the findings using grounded theory.
Unsurprisingly, the mothers’ main focus was on their son or daughter with learning disabilities. The researcher found that most were socially isolated, even from close kin. She discovered significant negative attitudes to institutions and expressed fears for the long-term safety and well-being of their sons and daughters. This led in most cases to a fierce determination to avoid the need for their sons and daughters to go into long-term care.
A key issue that emerged was the lack of effective services, especially around the point at which the young people were making the transition from childhood to adulthood tended to increase the protectiveness of parents.‘
My heart is always where he is’. Perspectives of mothers of young people with severe intellectual disabilities and challenging behaviour living at home, Hubert J, in British Journal of Learning Disabilities, 39: 216–224