Development and validation of the Paediatric Care and Needs Scale (PCANS) for assessing support needs of children and youth with acquired brain injury

Developmental Neurorehabilitation

Volumn 11, Issue 3, 2008, Pages 204-214

  Soo, Cheryl ^a,b   Tate, Robyn L ^a,c   Williams, Lindy ^d   Waddingham, Skye ^e   Waugh, Mary Clare ^d  

^a UNIVERSITY OF SYDNEY   (Australia)

^b ROYAL CHILDREN'S HOSPITAL   (Australia)

^c ROYAL REHABILITATION CENTRE SYDNEY   (Australia)

^d CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

^e SYDNEY CHILDREN'S HOSPITAL   (Australia)

Author keywords

Acquired brain injury; Assessment; Children; Support needs; Youth

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; ARTICLE; BRAIN INJURY; CHILD; CHILD CARE; CHILD DEVELOPMENT; CLINICAL ARTICLE; CONTROLLED STUDY; DISCRIMINANT VALIDITY; FEMALE; FUNCTIONAL INDEPENDENCE MEASURE; HEAD INJURY; HUMAN; MALE; MENTAL FUNCTION; PRESCHOOL CHILD; PRIORITY JOURNAL; SCHOOL CHILD; SELF CARE; SOCIAL SUPPORT; SOCIALIZATION; VALIDATION STUDY; ADOLESCENT; AGE; CAREGIVER; CHILD PARENT RELATION; DAILY LIFE ACTIVITY; DISABILITY; GLASGOW COMA SCALE; HEALTH CARE QUALITY; HEALTH SERVICE; HEALTH SURVEY; INJURY SCALE; ORGANIZATION AND MANAGEMENT; PEDIATRICS; PRACTICE GUIDELINE; PROGRAM DEVELOPMENT; QUALITY OF LIFE; SELF HELP; SENSITIVITY AND SPECIFICITY; SEX DIFFERENCE; SICKNESS IMPACT PROFILE; STANDARD;

ACTIVITIES OF DAILY LIVING; ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; AGE FACTORS; BRAIN INJURIES; CAREGIVERS; CHILD; CHILD, PRESCHOOL; DISABILITY EVALUATION; FEMALE; GLASGOW COMA SCALE; HEALTH SERVICES NEEDS AND DEMAND; HEALTH STATUS INDICATORS; HUMANS; INJURY SEVERITY SCORE; MALE; PARENT-CHILD RELATIONS; PEDIATRICS; PRACTICE GUIDELINES AS TOPIC; PROGRAM DEVELOPMENT; PROGRAM EVALUATION; QUALITY OF LIFE; SELF-HELP GROUPS; SENSITIVITY AND SPECIFICITY; SEX FACTORS; SICKNESS IMPACT PROFILE;

EID: 58149277460     PISSN: 17518423     EISSN: 17518431     Source Type: Journal    
DOI: 10.1080/17518420802259498     Document Type: Article

References (50)

1. Limmond J, Leeke R. Practitioner review: cognitive rehabilitation for children with acquired brain injury. Journal of Child Psychology and Psychiatry 2005;46:339-352.
2. Sharples PM. Head injury in children. In: Ward Platt MP, Little RA, editors. Injury in the young. Cambridge: Cambridge University Press; 1998. pp 263-299.
3. Kraus JF, Rock A, Hemyari P. Brain injuries among infants, children, adolescents, and young adults. American Journal of Diseases of Children 1990;144:684-691.
4. Anderson VA, Morse SA, Catroppa C, Haritou F, Rosenfeld JV. Thirty month outcome from early childhood head injury: a prospective analysis of neurobehavioural recovery. Brain 2004;127:2608-2620.
5. Bloom DR, Levin HS, Ewing-Cobbs L, Saunders AE, Song J, Fletcher JM, Kowatch RA. Lifetime and novel psychiatric disorders after pediatric traumatic brain injury. Journal of the American Academy of Child and Adolescent Psychiatry 2001;40:572-579.
6. Donders J, Warschausky S. Neurobehavioural outcomes after early versus late childhood traumatic brain injury. Journal of Head Trauma Rehabilitation 2007;22:296-302.
7. Fay GC, Jaffe KM, Polissar ML, Liao S, Rivara JB, Martin KM. Outcome of pediatric traumatic brain injury at three years: a cohort study. Archives of Physical Medicine and Rehabilitation 1994;75:733-741.
8. Max JE, Levin HS, Landis J, Schachar R, Saunders A, Ewing-Cobbs L, Chapman S, Dennis M. Predictors of personality change due to traumatic brain injury in children and adolescents in the first six months after injury. Journal of the American Academy of Child and Adolescent Psychiatry 2005;44:434-442.
9. Middleton JA. Practitioner review: psychological sequalae of head injury in children and adolescents. Journal of Child Psychology and Psychiatry 2001;42:165-180.
10. Yeates KO, Taylor HG, Barry CT, Drotar D, Wade SL, Stancin T. Neurobehavioral symptoms in childhood closed-head injuries: changes in prevalence and correlates during the first year post-injury. Journal of Pediatric Psychology 2001;26:79-91.
11. Anderson V, Catroppa C. Advances in post-acute rehabilitation after childhood brain injury: a focus on cognitive, behavioral, and social domains. American Journal of Physical Medicine and Rehabilitation 2006;85:767-778.
12. Andrews TK, Rose FD, Johnson DA. Social and behavioural effects of traumatic brain injury in children. Brain Injury 1998;12:133-138.
13. Levin HS, Zhang L, Dennis M, Ewing-Cobbs L, Schachar R, Max J, Landis JA, Roberson G, Scheibel RS, Miller DL, Hunter JV. Psychosocial outcome of TBI in children with unilateral frontal lesions. Journal of the International Neuropsychological Society 2004;10:305-316.
14. Stancin T, Drotar D, Taylor G, Yeates O, Wade SL, Minich NM. Health related quality of life of children and adolescents after traumatic brain injury. Pediatrics 2002;109:e34-e41.
15. Corrigan JD. Conducting statewide needs assessments for persons with traumatic brain injury. Journal of Head Trauma Rehabilitation 2001;16:1-19.
16. Heinemann AW, Sokol K, Garvin L, Bode RK. Measuring unmet needs and services among persons with traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2001;83:1052-1059.
17. High WM, Gordon WA, Lehmkuhl LD, Newton CN, Vandergoot D, Thoi L, Courtney L. Productivity and service utilization following traumatic brain injury: results of a survey by the RSA region TBI centers. Journal of Head Trauma Rehabilitation 1995;10:64-80.
18. Hodgkinson AE, Veerabangsa A, Drane D, McCluskey A. Service utilization following traumatic brain injury. Journal of Head Trauma Rehabilitation 2000;15:1208-1226.
19. Murray HM, Maslany GW, Jeffery B. Assessment of family needs following acquired brain injury in Saskatchewan. Brain Injury 2006;20:575-585.
20. Slomine BS, McCarthy ML, Ding R, MacKenzie EJ, Jaffe KM, Aitken ME, Durbin D, Christensen JR, Dorsch AM. Paidas CN and the CHAT study group. Health care utilization and needs after pediatric traumatic brain injury. Pediatrics 2006;17:e663-e674.
21. Bedell GM. Developing a follow-up survey focused on participation of children and youth with acquired brain injuries after discharge from inpatient rehabilitation. NeuroRehabilitation 2004;19:191-205.
22. Brooks BM, Rose FD, Johnson DA, Andrews TK, Gulamali R. Support for children following traumatic brain injury: the view of educational psychologists. Disability and Rehabilitation 2003;25:51-56.
23. Glang A, Tyler J, Pearson S, Todis B, Morvant M. Improving educational services for students with TBI through statewide consulting teams. NeuroRehabilitation 2004;19:219-231.
24. Pickelsimer EE, Selassie AW, Sample PL, Heinemann AW, Gu JK, Veldheer LC. Unmet service needs of persons with traumatic brain injury. Journal of Head Trauma Rehabilitation 2007;22:1-13.
25. Rotondi AJ, Sinkule J, Balzer K, Harris J, Moldovan R. A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers. Journal of Head Trauma Rehabilitation 2007;22:14-25.
26. Tate R. Assessing support needs for people with traumatic brain injury: the Care and Needs Scale (CANS). Brain Injury 2004;18:445-460.
27. Patrick DL, Peach H. Disablement in the community. Oxford: Oxford University Press; 1989.
28. Hiller J, Bakker K. Evaluation of assessment tools to determine care and needs of children with traumatic brain injuries. Report submitted to the Motor Accidents Authority of NSW; 2002.
29. Armstrong K, Kerns K. The assessment of parent needs following paediatric traumatic brain injury. Developmental Neurorehabilitation 2002;5:149-160.
30. Hawley CA, Ward AB, Magnay AR, Long J. Children's brain injury: a postal follow-up of 525 children from one health region in the UK. Brain Injury 2001;16:969-985.
31. World Health Organisation (WHO). International classification of functioning, disability and health. Geneva: World Health Organisation; 2001.
32. Soo CA, Tate RL, Hopman K, Forman M, Secheny T, Aird V, Browne S, Coulson C. Reliability of the Care and Needs Scale for assessing support needs after traumatic brain injury. Journal of Head Trauma Rehabilitation 2007; 22:288-295.
33. Soo CA, Tate RL, Williams L, Waddingham S, Waugh MC. The PCANS: adapting the Care and Needs Scale to a paediatric population with traumatic brain injury. Brain Injury 2005;19:37.
34. Sparrow SS, Balla DA, Cicchetti DV. Vineland Adaptive Behavior Scales Interview Edition: survey form manual. Circle Pines, Minnesota: American Guidance Service; 1984.
35. Braun SL, Granger CV. A practical approach to functional assessments in pediatrics. Occupational Therapy Practice 1991;2:46-51.
36. Msall ME, DiGaudio K, Duffy LC, LaForest S, Braun S, Granger CV. Normative sample of an instrument for tracking functional independence in children. Clinical Pediatrics 1994;33:431-438.
37. Granger CV, Msall ME, Braun S, Griswald K, McCabe M, Heyer N, Hamilton BB. Wee-FIM System clinical guide: Version 5.01. Buffalo, NY: University of Buffalo; 1998.
38. Chen CC, Bode RK, Granger CV, Heinemann AW. Psychometric properties and developmental differences in children's ADL item hierarchy: a study of the Wee-FIM instrument. American Journal of Physical Medicine and Rehabilitation 2005;84:671-679.
39. Msall ME, DiGaudio K, Rodgers BT, LaForest S, Catanzaro NL, Campbell J, Wilczenski F, Duffy LC. The functional independence measure for children (Wee-FIM). Clinical Pediatrics 1994;33:421-430.
40. Sperle PA, Ottenbacher KJ, Braun SL, Lane SJ, Nochajski S. Equivalence reliability of the functional independence measure for children (Wee-FIM) administration methods. American Journal of Occupational Therapy 1996;51:35-41.
41. Ottenbacher KJ, Msall ME, Lyon N, Duffy LC, Granger CV, Braun S. Measuring developmental and functional status in children with disabilities. Developmental Medicine and Child Neurology 1999;41:186-194.
42. Crouchman M, Rossiter L, Colaco T, Forsyth R. A practical scale for paediatric head injury. Archives of Disease in Childhood 2001;84:120-124.
43. Jennett B, Bond M. Assessment of outcome after severe brain damage. A practical scale. Lancet 1975;1:480-484.
44. Achehbach TM, Rescorla, LA. Manual for the ASEBA School-Age Forms & Profiles. Burlington, VT: University of Vermont, Research Center for Children, Youth, & Families; 2001.
45. Cohen J. Statistical power analysis for the behavioural sciences. Hillsdale, NJ: Erlbaum; 1988.
46. Boake C. Supervision rating scale: a measure of functional outcome from brain injury. Archives of Physical Medicine and Rehabilitation 1997;77:765-772.
47. Ylvisaker M, Todis B, Glang A, Urbancyk B, Franklin C, DePompei R, Feeney T, Maxwell NM, Pearson S, Siantz Tyler JS. Educating students with TBI: Themes and recommendations. Journal of Head Trauma Rehabilitation 2001;16:76-93.
48. Wade SL, Taylor G, Drotar D, Stancin T, Yeates KO. Family burden and adaptation during the initial year after traumatic brain injury in children. Pediatrics 1998; 102:110-116.
49. McCarthy ML, MacKenzie EJ, Durbin DR, Aitken ME, Jaffe KM, Paidas CN, Slomine B, Dorsch AM, Christensen JR, Ding R. Health-related quality of life during the first year after traumatic brain injury. Archives of Pediatric and Adolescent Medicine 2006;160:252-260.
50. Souza LMDN, Braga LW, Filho N, Dellatolas G. Quality of life: child and parent perspectives following severe traumatic brain injury. Developmental Neurorehabiliation 2007; 10:35-47.