‘My heart is always where he is’. Perspectives of mothers of young people with severe intellectual disabilities and challenging behaviour living at home

Abstract

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 longterm 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. SummaryLittle 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

How to facilitate transition to adulthood? Innovative solutions from parents of young adults with profound intellectual disability

“…They are also poorly adapted to the needs of adults with profound intellectual disability as the majority of services initially target a population with less severe disabilities, such as people with mild‐to‐moderate intellectual disability (Certo et al., ; Hudson, ; Shogren & Plotner, ). The last major challenge is the lack of collaboration and coordination between professionals at different organizations involved in planning the transition to adulthood (Bindels‐de Heus, Van Staa, Van Vliet, Ewals, & Hilberink, ; Davies, Rennick, & Majnemer, ; Hubert, ; Hudson, ; Rapport spécial du protecteur du citoyen, ; Shogren & Plotner, ; Ward, Maliett, Heslop, & Simons, ). It is quite possible that this difficulty is linked to a misunderstanding of individual roles in transition planning and a lack of clarity in the division of responsibilities, which could lead to miscommunication between organizations (Gauthier‐Boudreault, Gallagher, & Couture, 2017).…”

Transition to adult mental health services for young people with an intellectual disability

“…Higher rates of mental ill health among young people with ID transitioning into adulthood indicate higher levels of support needs. Yet qualitative studies of the experiences of young people with ID and their parents suggest that support needs during this time are generally not met . Young people with ID have identified changes in their support networks during transition as an important issue .…”

“…In particular, changes in support persons and key staff during transition to adult services, as well as differences in the availability of funding (resulting in discontinuation of some services), have been described as a source of confusion, frustration and anxiety . Parents have reported feeling that, as their child transitioned into adulthood, services became more disorganised, less reliable and supportive and less able to meet their child's needs . Parents have described their experiences of transition planning as being chaotic, with inadequacies in planning (e.g.…”

“…Yet qualitative studies of the experiences of young people with ID and their parents suggest that support needs during this time are generally not met. [8][9][10] Young people with ID have identified changes in their support networks during transition as an important issue. 8 In particular, changes in support persons and key staff during transition to adult services, as well as differences in the availability of funding (resulting in discontinuation of some services), have been described as a source of confusion, frustration and anxiety.…”

“…8 Parents have reported feeling that, as their child transitioned into adulthood, services became more disorganised, less reliable and supportive and less able to meet their child's needs. [8][9][10] Parents have described their experiences of transition planning as being chaotic, with inadequacies in planning (e.g. short-term focus and delays in receiving access to new services) being a major contributor to mental health and behavioural issues for their child.…”