“I would never regret getting run over”: Understanding children and young people following a Traumatic Brain Injury Lorna Wales (University of Warwick and The Children’s Trust, Tadworth, UK); Carol Hawley (University of Warwick, UK) and Peter Sidebotham (University of Warwick, UK)
[email protected]
Rehabilitation following a Traumatic Brain Injury (TBI) in childhood is challenging for all concerned - the children and young people, their families and their clinicians. At the forefront of any respectful collaborative venture should be understanding of the others perspective. The therapeutic relationship is shaped by an understanding of typical development. In early years of typical development the acquisition of physical skills dominates. With increasing age the focus changes towards the social and peer concerns of adolescence. Additionally, children develop from a concrete and physical focus to an abstract understanding of psychological and social themes. This developmental approach needs integrating with the unique personal perspective of children and young people having experienced an interruption to development at various ages.
Objective To improve collaborative participation through understanding the personal impact of a brain injury in childhood.
Aspirations • I want to become an RSPCA officer • Maybe just make me happy
Relationships
• Well you get better jobs, earn a better salary, have a better life when you’re older • Cos you’re on this planet for the briefest of times you may as well enjoy it. • Money makes the world go round
• I’ve got true friends and I can trust my family and my friends • My brother will still annoy me
Social • Well everybody gets on with me • I’m really confident and bubbly
Beliefs
Key themes
Being different • I’m different from everybody and how I was • I’m older … I’ve got a brain injury … and everything is different now
Methods N=15; 10 boys, 5 girls Moderate – severe Traumatic Brain Injury (TBI) Age 9-19 years 1-5 years post injury Self-Understanding Interview (Damon & Hart, 1988) 3 times over 2 years
Participation
Brain Injury
• I like coming home and having a nice bath • If I don’t take my medication erm I’m pretty much falling asleep in every psychology lesson
• It’s really hard to think about the future because of what happened to me • I’ll still have a brain injury… the future will tell
Results 3 children reported positive adjustment “I would never regret getting run over right cos I’ve met some great people” 3 children negative adjustment to brain injury “it’s been nearly 3 years now and if I can’t get over it now, I doubt I’ll ever be able to” 16/20 children who made reference to accident were over 12 years 14/20 children who made reference to accident were in first 2 yrs post injury Children of all ages describe self in present and future in physical and material domains
Characteristics • I’m a girl… I’ve got brown hair • My face is the same, that’s about the only thing
Themes shared by children with TBI and typically developing children/young people Themes unique to children/young people following TBI
Conclusions Children and young people who have a TBI have similar self-perceptions compared to their typically developing peers. Unsurprisingly, these data support supplementary themes relating to brain injury and being different. Many of the children articulate their brain injury as an ongoing concern in the first two
years post injury, especially those who sustain their injury in adolescence. Understanding children and young people within a developmental context will enable professionals to maximise their therapeutic relationship and consequently improve participation in goal orientated rehabilitation.
Children first and head-injured second: Assessing self-awareness developmentally Lorna Wales (University of Warwick and The Children’s Trust, Tadworth, UK); Carol Hawley (University of Warwick, UK) and Peter Sidebotham (University of Warwick, UK)
[email protected]
Traumatic Brain Injury (TBI) in childhood differs from adults, not least because children have an injury against a backdrop of ongoing development. Impaired self-awareness is frequently cited in the adult literature as a factor interfering with engagement in rehabilitation and affecting long term outcomes. However, there is currently no guidance for assessing self-awareness from a developmental perspective
Figure 1: Results of tools to measure self-awareness in children and the information gained
Developed for children with brain injury
Self Perception Scale for Children/Adolescents3
Measure must report across developmental domains
Self v therapist rating
Self v therapist rating Self v norm rating
Developed for typical children (Norm referenced)
Methods Multiple case study – mixed methods N=15; 10 boys, 5 girls Age: 9 – 19yrs Age at injury: 5y 11m – 17y 1m Time since injury: 1y 2m – 4y 4m GCS: moderate – severe Measures must provide discrepancy scores comparing self-rating with others
Executive Function Map2
Self v parent rating
Self v teacher rating
Aim To evaluate role of existing measures to understand self-awareness in children following TBI
Knowledge Interview for Children1
References 1. Beardmore et al 1999 2. Ylvisaker 1998 3. Harter 1985 & 1988 4. Goodman 2005 5. Damon & Hart 1988
Strengths and Difficulties Questionnaire4
Self Understanding Interview5
Self v parent rating
What do we learn – case examples 8/12 deficits from list recognised by parent but not endorsed by child 3/12 deficits from list recognised by parent but not endorsed by child
William Rosie
Self-rating before 6.5/10; after 8/10. Researcher rating 3/10. Anticipated physical difficulties only. Researcher identified physical and cognitive difficulties and prompted throughout Lee Overrates athletic competence compared to teacher Self-rating lower than teacher in all domains
Overrates competence in 5/8 domains compared to therapist
Self-rating below norm in 4/6 domains
William Kevin
Rupert
Dan
Self-rating lower than mother in 4/6 domains Amelia Self-rating “slightly raised” compared to mother “very high” for overall stress Lee
Self v norm rating
Self-ratings “slightly raised” compared to norm - 3/6 domains
Rupert
Self v norm rating
Main themes from interview data = physical abilities (18%); physical characteristics (9%); no age-expected social and psychological themes
Rachel
Conclusions Tools are available from a developmental framework or specifically for children with TBI Each measure provides report from different sources ie. parents, therapists, teachers and young people
Professionals in the team could administer different assessment tools and discuss the findings Tools give a complete picture of the child’s ability across the range of domains
From a research perspective this range of measures gives a deeper understanding of the complex phenomenon of self-awareness The combined profile also supports multidisciplinary teams involved in goal setting
Ensures effective collaborative rehabilitation goal setting at an appropriate developmental level
