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‘My heart is always where he is’. Perspectives of mothers of young people with severe intellectual disabilities and challenging behaviour living at home
Author(s) -
Hubert Jane
Publication year - 2011
Publication title -
british journal of learning disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.633
H-Index - 39
eISSN - 1468-3156
pISSN - 1354-4187
DOI - 10.1111/j.1468-3156.2010.00658.x
Subject(s) - daughter , psychology , intellectual disability , developmental psychology , psychiatry , political science , law
Accessible summary• The researcher visited twenty families over 2 years. In all of the families, there was a son or daughter (from 15 to 22 years old) who had severe or profound intellectual disabilities. This meant that the mothers had to do most things for them. They bathed and dressed them and helped them to eat. Many spent time in the night with them as well. Most of the young people could not speak at all. Many of them had epilepsy. They were very difficult to look after because they tried to hurt themselves or other people, or break up the furniture. • The researcher wanted to find out how the mothers coped with all they had to do and how they felt about their son or daughter. In spite of all they had to do the mothers felt very close to them and were determined not to let them go into long‐term care away. The mothers thought that if they lived somewhere else they would not be cared for and loved as they were now. They also thought that bad things might happen to them, and because they could not talk no one would know. The mothers felt that people who lived in long‐stay homes were not at all like their children. Many of them hoped that they would live longer than their son or daughter, so that they could stay at home and be looked after by their mothers all their lives. • Most of the families only saw their own sisters and brothers and other relatives now and again. They felt that other people did not really like having anything to do with them. This meant that they needed help and support from the social and health services, but they felt they had been let down by them as well.Summary Little research has focussed on the perspectives of families caring for someone with severe or profound intellectual disabilities and challenging behaviour. The main aim of this research was to gain understanding of the experiences and perspectives of families, especially mothers, of young people with these complex needs, including attitudes to long‐term residential care. Ethnographic methods were used, consisting of intensive interviews over 2 years, mainly with mothers, and participant observation. The analysis used grounded theory. The mothers’ main focus was on their son or daughter with intellectual disabilities. Most were socially isolated, even from close kin. Their negative attitudes to institutions and fears for the safety and well‐being of their sons and daughters led to determination not to put them into long‐term care. Mothers struggled to care for the young people at home, in spite of difficulties, family tensions and social isolation. Lack of effective services, especially around transition to adulthood, increased parents’ protectiveness.