Lack of effective services for young people with challenging behaviour at transition tends to increase protectiveness of parents


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


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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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