This is a post by Grace Kelly. Grace is a Research Fellow in the Centre for Evidence and Social Innovation (CESI).
“Disabled children are over-represented in looked after children populations and it is estimated that between 10 and 25% of looked after children are disabled.”
In a recent study on the emotional well-being needs of adolescent with disabilities, we interviewed 37 young people, and at least three of them were currently adopted or fostered. This is a higher proportion than found in the general population, which is likely a reflection of the sampling method but also because of the higher representation of disabled young people with experience of the care system. This is an account of some of the findings from this study, with inputs from two of the care experienced young people.
There is general consensus that a person’s well-being includes not only their objective circumstances but how they think and feel about their life. This is commonly referred to as subjective well-being (SWB), with the focus more on how people experience their lives – how happy or satisfied they are with their life overall, and with specific aspects of their life. SWB is also interested in negative feelings and understanding why some people experience their life in more positive ways than others. An essential constituent of SWB, which goes beyond life evaluations and emotional feelings, is ‘eudemonic’ or psychological well-being. This is characterised by having a sense of purpose in life, autonomy, aspiration and self-esteem and, importantly, having an equal opportunity to bring this about.
Measuring SWB involves asking a person to reflect on their life and put these thoughts into words. This requires a high level of self-awareness and good verbal reasoning, which often puts children and young people with particular impairments at risk of exclusion from research on well-being. Too often we don’t hear from these young people themselves. But one group of young people from the Barnardo’s Advocacy Group 6th Sense in Northern Ireland addressed this gap by initiating this research study. The result was the report ‘Improving the Well-being of Disabled Young People’.
Through conversations with these adolescents, it becomes clear that the things which promote good SWB differs little from that of their non-disabled peers – positive family relationships, good friendships, social interaction and participation. Overall, good family relationships emerged as one of the most important factors which impacted on how SWB was experienced, for all those taking part. When Susan* was asked what made her feel happy or feel good about herself, she explained it in terms of being cared for and loved:
My mummy – my other mummy, cause I was adopted – she didn’t really look after me properly. She says it was because she couldn’t look after me properly, but I know it was because she told the social worker lies…so then my granda took over and looked after me. That made me feel happy. Then when my granda was old and couldn’t look after me, my other family, my new family foster cared me. Then they said they wanted to adopt me and that was my happiest moment.
For Clare*, who is a carer for her adoptive mother, her own happiness was bound closely to her mother’s well-being as she explains ‘when mum’s not sore, I’m happy’. Clare said she felt ‘really guilty’ when her mum was not well. Her mother’s health affected Clare’s friendships as she often cancelled outings to care for mum. Her friends were not always understanding, but joining a young carers group provided a chance for Clare to meet other young people in her position. Thus, underlining the importance of facilities which promote, and develop, social interaction.
Young people who were most happy with their lives and exhibited good psychological well-being were those who had positive social relations with others, who had a sense of self-determination, a belief in themselves and who believed that opportunities existed for them to realise their potential and continue to develop as a person. Participants who exhibited low well-being and poor psychological health were noticeable due to the lack of references to most of these core dimensions.
If we are serious about improving the well-being of all young adults with a disability, society needs to ensure that the opportunities for living a happy and fulfilling life are available to them, and the conditions which deplete their well-being are addressed.
The report by Dr Grace Kelly, Dr Berni Kelly and Professor Geraldine Macdonald was funded by the Northern Ireland Public Health Agency, Research and Development.
* Names are pseudonyms
Family is such a vital support for the care of young people with disability.