A developmental perspective informs a framework of self-awareness following Traumatic Brain Injury in childhood 21 June 2017 Dr Lorna Wales, Research Professional Lead

Outline of session Overview of PhD Development of self in typical development New definition for self-awareness after brain injury Conceptual framework of self-awareness

Acknowledgements University of Warwick The Children’s Trust Medical School Supervisors – Dr Carol Hawley, Dr Peter Sidebotham Advisor – Dr George The Children’s Trust Funding Managers Mentors – Dr Carolyn Dunford, Dr Jenny Jim Participants and families

TBI Rehabilitation Long term Introduction Poor outcomes Poor self-awareness TBI Lack of engagement Rehabilitation Poor outcomes Long term

Definition Following a TBI, individuals may have difficulty “understanding that they have deficits, anticipating the impact of those deficits on function and assessing their occupational performance in relation to those deficits” Dirette et al 2008, p44

I’m amazing, look how high I can jump Young children I’m amazing, look how high I can jump

Middle childhood Well I’m not as good as Jonah at sums, but I always get picked first for the team

Adolescence I don’t understand

Rationale for PhD Start from typical development and build up or start with adult models and try out into childhood? Brain maturation Adult literature and models assume a fully developed system

PhD aim To gather quantitative and qualitative longitudinal data from children and young people who have experienced a moderate to severe traumatic brain injury in order to understand their level of self-awareness. A moment in time and change over time

PhD study Methods n=15 Moderate/severe Traumatic Brain Injury Age 4-18yrs at injury; 1 year post-injury Design Longitudinal (4 visits over 2 years) Mixed methods (QUAN+QUAL) Case study

PhD study - measures Self-report Parent/teacher/therapist report Typical development measures– Harter Scales, Self-Understanding Interview Clinical measures Knowledge Interview for Children (KIC) Strengths and Difficulties Questionnaire (SDQ) Children’s Cooking Task Executive Function Map Discrepancy

Key findings Harter pen portraits Thematic analysis of interview data Aspirations Beliefs Being different Brain injury Characteristics Participation Interpersonal interactions and relationships Discrepancy – self v other AND self v norm No children had agreement across all domains when compared to others and compared to norms Greatest discrepancy self-other was social and behavioural Greatest discrepancy self-norm was school/learning and physical Age at injury Four of the cases with the greatest amount of discrepancy were the youngest Older children more likely to make reference to their injury Change over time All 10 cases had positive change in at least one domain Becoming more closely aligned to age matched norms Children more than 2 years post injury more likely to make reference to their injury Harter pen portraits

Proposal A new definition A conceptual framework

Definition Self-awareness of deficits following a brain injury in childhood is a dynamic and complex construct. At its earliest level it is an adult-supported reflection of ability in the physical domain. Through maturity and recovery there is an ability to appreciate a range of deficits across domains, and anticipate their effect on functional performance. Wales 2016

Self-awareness in context AGE and RECOVERY Self-awareness knowledge Acquisition of cognitive and metacognitive skills 1.There is a relationship in typical development between a child’s age and their ability to understand and retain knowledge 2. In typical development, the pre-school child is able to demonstrate autobiographical memory with the development of language 3.Young children typically find it more difficult to integrate autobiographical memories, behaviours and experiences 4.Typically developing children mature from concrete thinking that is context dependent in early and middle childhood to abstract thinking in adolescence 5.Young children are typically concerned with the physical domain in early childhood. 6.Typically developing children have little knowledge of how the body works in early childhood, and may have inaccurate knowledge Self-awareness in context Developmental shift from EXTERNAL to INTERNAL feedback and support 1.Children require knowledge and experience of how tasks should be performed 2.Typically developing children have to learn about strategies ,and when to employ them 3.Typically developing children rely on external monitoring in early childhood. Self-awareness in the future Towards anticipatory awareness Development of executive function, creativity and imagination 1.Prospective memory skills are required to manage future events. 2.Creativity and imagination develop through childhood 3.Young people learn to integrate and apply knowledge to future events independently in adolescence 4.Typical development of executive function (planning, organizing, shift in attention, cognitive flexibility) has not developed in younger children and stabilizes in middle childhood (8-11years). 5.According to the adult definition of self-awareness, an adult can integrate knowledge of deficits across domains , and anticipate their effect on functional performance

AGE and RECOVERY Self-awareness knowledge Acquisition of cognitive and metacognitive skills 1.There is a relationship in typical development between a child’s age and their ability to understand and retain knowledge 2. In typical development, the pre-school child is able to demonstrate autobiographical memory with the development of language 3.Young children typically find it more difficult to integrate autobiographical memories, behaviours and experiences 4.Typically developing children mature from concrete thinking that is context dependent in early and middle childhood to abstract thinking in adolescence 5.Young children are typically concerned with the physical domain in early childhood. 6.Typically developing children have little knowledge of how the body works in early childhood, and may have inaccurate knowledge

Self-awareness in context AGE and RECOVERY Self-awareness knowledge Acquisition of cognitive and metacognitive skills Self-awareness in context Developmental shift from EXTERNAL to INTERNAL feedback and support 1.Children require knowledge and experience of how tasks should be performed 2.Typically developing children have to learn about strategies ,and when to employ them 3.Typically developing children rely on external monitoring in early childhood.

Self-awareness in context Self-awareness in the future AGE and RECOVERY Self-awareness knowledge Acquisition of cognitive and metacognitive skills Self-awareness in context Developmental shift from EXTERNAL to INTERNAL feedback and support Self-awareness in the future Towards anticipatory awareness Development of executive function, creativity and imagination 1.Prospective memory skills are required to manage future events. 2.Creativity and imagination develop through childhood 3.Young people learn to integrate and apply knowledge to future events independently in adolescence 4.Typical development of executive function (planning, organizing, shift in attention, cognitive flexibility) has not developed in younger children and stabilizes in middle childhood (8-11years). 5.According to the adult definition of self-awareness, an adult can integrate knowledge of deficits across domains , and anticipate their effect on functional performance

Self-awareness in context AGE and RECOVERY Self-awareness knowledge Acquisition of cognitive and metacognitive skills 1.There is a relationship in typical development between a child’s age and their ability to understand and retain knowledge 2. In typical development, the pre-school child is able to demonstrate autobiographical memory with the development of language 3.Young children typically find it more difficult to integrate autobiographical memories, behaviours and experiences 4.Typically developing children mature from concrete thinking that is context dependent in early and middle childhood to abstract thinking in adolescence 5.Young children are typically concerned with the physical domain in early childhood. 6.Typically developing children have little knowledge of how the body works in early childhood, and may have inaccurate knowledge Self-awareness in context Developmental shift from EXTERNAL to INTERNAL feedback and support 1.Children require knowledge and experience of how tasks should be performed 2.Typically developing children have to learn about strategies ,and when to employ them 3.Typically developing children rely on external monitoring in early childhood. Self-awareness in the future Towards anticipatory awareness Development of executive function, creativity and imagination 1.Prospective memory skills are required to manage future events. 2.Creativity and imagination develop through childhood 3.Young people learn to integrate and apply knowledge to future events independently in adolescence 4.Typical development of executive function (planning, organizing, shift in attention, cognitive flexibility) has not developed in younger children and stabilizes in middle childhood (8-11years). 5.According to the adult definition of self-awareness, an adult can integrate knowledge of deficits across domains , and anticipate their effect on functional performance

Conclusions Children have an interrupted development of self-awareness following a TBI Measuring self-awareness is challenging Degree of self-awareness deficit related to age Ongoing changes of self-awareness over time Using developmental framework gives more insights than adult literature alone Message for goal setting

Less reliance on adult literature Learn child development Take home messages Think child Age at injury Less reliance on adult literature Learn child development

Thank You lwales@thechildrenstrust.org.uk @WalesLorna

Harter pen portraits Early to middle childhood I have a lot of friends, in my neighbourhood, at school, and at my church. I’m good at schoolwork, I know my words, and letters, and my numbers. I can run fast, and I can climb high, a lot higher than I could when I was little and I can run faster, too. I can also throw a ball real far, I’m going to be on some kind of team when I’m older. I can do lots of stuff real good. Lots! Middle adolescent At school, I’m serious, even studious every now and then, but on the other hand, I’m a goof-off too, because if you’re too studious, you won’t be popular. So I go back and forth, which means I don’t do that well in terms of my grades. But that causes problems at home, where I’m pretty anxious when I’m around my parents. They expect me to get all A’s, and get pretty annoyed with me when report cards come out.

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