Developmental Neurorehabilitation

ISSN: 1751-8423 (Print) 1751-8431 (Online) Journal homepage: http://www.tandfonline.com/loi/ipdr20

Assessing psychosocial functioning following childhood acquired brain injury: The Sydney Psychosocial Reintegration Scale for Children Cheryl Soo, Robyn L. Tate, Vicki Anderson, Miriam H. Beauchamp, Naomi Brookes, Cathy Catroppa, Jane Galvin & Frank Muscara To cite this article: Cheryl Soo, Robyn L. Tate, Vicki Anderson, Miriam H. Beauchamp, Naomi Brookes, Cathy Catroppa, Jane Galvin & Frank Muscara (2015): Assessing psychosocial functioning following childhood acquired brain injury: The Sydney Psychosocial Reintegration Scale for Children, Developmental Neurorehabilitation, DOI: 10.3109/17518423.2014.1000504 To link to this article: http://dx.doi.org/10.3109/17518423.2014.1000504

Published online: 10 Mar 2015.

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Date: 05 November 2015, At: 20:47

http://informahealthcare.com/pdr ISSN: 1751-8423 (print), 1751-8431 (electronic) Dev Neurorehabil, Early Online: 1–9 ! 2015 Informa UK Ltd. DOI: 10.3109/17518423.2014.1000504

Assessing psychosocial functioning following childhood acquired brain injury: The Sydney Psychosocial Reintegration Scale for Children Cheryl Soo1,2, Robyn L. Tate2, Vicki Anderson1, Miriam H. Beauchamp3, Naomi Brookes4, Cathy Catroppa1, Jane Galvin1,5, & Frank Muscara1 Australian Centre for Child Neuropsychology Studies, Murdoch Children’s Research Institute, Royal Children’s Hospital, Melbourne, Australia, 2John Walsh Centre for Rehabilitation Research, Kolling Institute of Medical Research, Sydney Medical School Northern, University of Sydney, Royal North Shore Hospital, Sydney, Australia, 3Sainte-Justine Hospital Research Center, University of Montreal, Montreal, Quebec, Canada, 4Brain Injury Rehabilitation Program, Sydney Children’s Hospital, Sydney, Australia, and 5Victorian Paediatric Rehabilitation Service, Melbourne, Australia

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Abstract

Keywords

Objective: The Sydney Psychosocial Reintegration Scale for Children (SPRS-C) assesses psychosocial functioning in children with acquired brain injury (ABI). This article aims to: (1) describe normative data for the parent-rated SPRS-C and, (2) evaluate the discriminant validity of the SPRS-C. Methods: For Aim 1, participants were parents of typically developing children (TDC) aged 5–14 years (N ¼ 200). For Aim 2, participants with ABI were aged 5–14 years (n ¼ 26). A matched group of TDC was sampled from the larger normative sample to serve as a control group (n ¼ 26). Results: For Aim 1, SPRS-C scores across the 10 age-bands were in the higher ranges. Correlation coefficients of SPRS-C total score with child’s age and parent occupational skill level were not statistically significant. For Aim 2, SPRS-C scores for the ABI group were significantly lower than the control group. Conclusions: These data provide a guide for clinical interpretation of the SPRS-C for measuring psychosocial functioning in children with ABI.

ABI, normative study, outcome measurement

Introduction Childhood acquired brain injury (ABI) including traumatic brain injury (TBI), stroke, brain tumour or brain infection can have considerable detrimental effects on a wide range of areas of everyday functioning. Within the International Classification of Functioning, Disability and Health framework (ICF) [1] a person’s functioning is described across three levels: (1) impairments (i.e. difficulties in body functions), (2) activity (i.e. the execution of a task or action by a person) and (3) participation (i.e. involvement in life situation). The framework also highlights the contribution of environmental and personal factors, such as family and social support. For children with ABI, more severe degrees of injury have been linked with greater difficulties across the span of ICF domains, including at the impairment [2–4] and activity limitation and participation restriction levels [5–11]. Within the childhood ABI literature, an increasing large number of studies are documenting difficulties at the activity limitation and participation end of the ICF continuum [5–13]. These studies often focus on psychosocial aspects of life involvement such as engagement in school and recreational activities, social functioning and quality of interpersonal Correspondence: Cheryl Soo, PhD, Australian Centre for Child Neuropsychology Studies, Murdoch Children’s Research Institute, Royal Children’s Hospital, Flemington Rd, Parkville, Victoria 3052, Australia. Tel: +61 3 99366761. E-mail: [email protected]

History Received 9 December 2014 Accepted 16 December 2014 Published online 25 February 2015

relationships, as well as the ability to perform daily living skills such as self-care tasks and daily home activities [12–17]. One challenge in examining psychosocial outcome following childhood ABI has been the way in which this construct is measured, with the definition of psychosocial functioning varying across different studies. Such inconsistencies mean that a wide range of instruments is used to assess different facets of psychosocial outcome, from scales of adaptive, social, academic and emotional functioning to broad band behavioural functioning questionnaires [18–20]. Psychosocial functioning may be further defined as one or various combinations of the above domains such as adaptive, behavioural, and social functioning [16] vs. behavioural functioning alone [19]. Currently, only a few scales are available which have been specifically designed to assess the range of psychosocial domains clinically relevant for children with ABI (e.g. Child and Adolescent Scale of Participation or CASP [21]), and so more options for assessing psychosocial outcome in this population are needed. The Sydney Psychosocial Reintegration Scale (SPRS) was specifically designed to assess psychosocial functioning in adults with TBI [22, 23]. The development and conceptual background of the SPRS are reviewed in Tate [24]. The 12 items of the SPRS assesses post-injury participation in three areas of daily life: (1) Occupational Activities (e.g. work, leisure and studies), (2) Interpersonal Relationships and (3) Independent Living Skills (e.g. personal hygiene activities

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and transport in the community). The scale taps the ICF [1] domains of activity limitation and participation restriction, and its reliability and validity for a brain injury population have been established [24–26]. A distinct advantage of the SPRS is that is it relatively quick and simple to administer and is available in three forms corresponding to self, relative or clinical report. In order to address the scarcity of psychosocial functioning scales designed for children with ABI, the SPRS was recently adapted for use with children [27]. The adaptation focused on the form B of the SPRS which addresses current functioning. As with the adult SPRS, parent (relative), clinician and self-report formats are available. Each of the 12 items was reviewed by a multidisciplinary group of clinicians including paediatric psychologists, neuropsychologists and occupational therapists and its applicability to children was assessed. Changes were then made to each item to ensure relevance to children. For example, item 7 in the adult version ‘How do you rate your relative’s relationship with other people outside of the family (e.g. close friends, workmates, neighbours)?’ was replaced with ‘How do you rate your child’s relationship with other people outside of the family, such as friends and boyfriends/girlfriends?’ Item 12 (accommodation) required a substantial change in focus. In the adult version, item 12 asks ‘How do you rate your relative’s living situation?’ This item which focuses on the ability of the person to live independently in the community has limited applicability to children and so this item was replaced with an item which focuses on the child’s ability in everyday activities, such as performing or taking on responsibility for age appropriate chores – ‘How do you rate your child’s ability to perform everyday activities?’ During this process, it was clear that the items of the SPRS-C should be framed according to a developmental criterion; and so the respondent is asked to rate current status compared to children of the same age for each item of the scale. The SPRS-C follows the same structure of the SPRS and has many same advantages such as being short and easy to administer, providing information on the parent (relative), child (self) and clinician’s perspectives on psychosocial functioning. Many scales on functional outcome for children focus on skills development (e.g. Vineland Adaptive Behaviour Scales [28]). The SPRS-C, however, follows a different structure as it was designed to assess various informant perspectives of psychosocial outcome rather than measuring mastery of a skill and thus provides a useful alternative method for assessing outcome. Following the adaptation, studies have appeared which support the use of the SPRS-C for children and adolescents with ABI [12–13, 17]. Soo et al. [17] examined SPRS-C clinical ratings in a rehabilitation sample of children with ABI aged 7–18 years (n ¼ 35), in which 39% of the group sustained moderate/severe injuries. They found that 38% of children with ABI were classified as having good psychosocial outcome, with 54% of children classified as limited and 8% as poor. Participants with behavioural difficulties were also reported to have lower (poorer functioning) scores on the SPRS-C compared to those without behavioural difficulties. Comparison of SPRS-C ratings in a sample of adolescents with TBI aged 15 to 18 years (n ¼ 17) with their parents (n ¼ 16) have also been investigated [12]. Good agreement

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was reported between parents and adolescents with TBI across most SPRS-C domains with ICCs ranging from 0.65 to 0.97 with the one exception being the Daily Living Skills domain where the ICC was 0.26. When SPRS-C ratings completed by parents of adolescents with TBI (n ¼ 17) were compared to parents of TDC (n ¼ 16) [13] mixed results were obtained. Although no significant differences were found between these two groups for total SPRS-C scores, differences were found for SPRS-C domains scores according to TBI severity, with those in the severe TBI group rated more poorly on the School and Leisure Activities and Daily Living Skills domains than the control group. Even though the above findings provide some preliminary evidence for the validity of the SPRS-C, research with larger samples sizes of children with ABI will provide further insight into these data. In addition, an important next step for the SPRS-C is to examine normative patterns of the scale in order to provide essential information to aid interpretation of the scale when used with ABI groups. The purpose of this article is to add to the existing pool of data examining the psychometric properties of the SPRS-C for children with ABI. The SPRS (i.e. adult version of the scale), may be used for adolescents aged 15–18 years and so the present studies focus on children aged 5–14 years. The two specific aims are to: (1) describe normative data on the SPRS-C in a sample of 200 TDC aged between 5 and 14 years and (2) examine the discriminant validity of the SPRS-C in a sample of children with ABI compared to a matched control group. We expect item responses in the higher ranges for the normative group and that scores in the ABI group will be significantly lower than those in the control group.

Methods Participants (1) Normative sample (N ¼ 200) Two hundred participants were recruited from public schools in metropolitan Melbourne, Australia. Participants were parents (biological, step- and adoptive) of TDC aged 5 to 14 at time of interview. Exclusion criteria were: (1) diagnosis of ABI, other neurological, developmental or behavioural disorder, or (2) a significant medical condition. Children and their families were recruited based on age, sex and socio-economic factors. The ‘Like schools’ group classification [29] was used in order to obtain a representative sample of children based on socio-economic factors. This classification system allocates all public schools in metropolitan Melbourne, a number between one and nine, where 1 ¼ least disadvantaged and 9 ¼ most disadvantaged. The system is based on the proportion of students attending the school who are in receipt of education maintenance allowance or youth allowance and speak a language other than English at home. ‘Like schools’ groups were collapsed into three broader categories (Groups 1–3, Groups 4–6 and Groups 7–9) and an attempt was made to recruit evenly across schools in these categories. Families were selectively recruited to represent 10 equal subgroups based on their child’s age at the time of interview (n ¼ 20 for each child age group, 5–14 years). Efforts were made to sample equal numbers of males and females within each age category.

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DOI: 10.3109/17518423.2014.1000504

(2) ABI (n ¼ 26) and matched TDC samples (n ¼ 26) Participants in the ABI sample (n ¼ 26) included children and their parents recruited from the Brain Injury Rehabilitation Program (BIRP), Sydney Children’s Hospital. Families were included in the study if their child: (1) had a history of ABI (e.g. encephalitis, stroke, or hypoxia) or TBI where there was head trauma and loss of or altered consciousness as defined by Glasgow Coma Score (GCS) [30], post-traumatic amnesia (PTA) or intra-cranial abnormalities on brain scan, (2) were aged between 5 and 14 years, (3) had their injury or onset of illness greater than 6 months ago. Exclusion criteria were: (1) parent and/or child nonfluency in English, and (2) child history of developmental disability, or pre-injury neurological disorder. The ABI sample was compared to a matched sample of TDC (n ¼ 26) which was drawn from the normative group of 200 participants. The matching process was conducted in two stages. In the first instance, for each child in the ABI group, a child was drawn from the normative group who was matched in terms of: (1) age, (2) sex and (3) socio-economic status (parent occupational skill level). In the event there was more than one case from the normative group who matched the ABI case on these three criteria, then one of these cases was randomly selected (using computer generated series of numbers) as the matched case for that ABI participant. A second stage followed when no cases were found in the normative sample that matched the ABI participant on all three of the above criteria – in this case, the ABI participant was matched on the criteria of age and sex only. In a similar way, in the event that more than one case from the normative group matched the ABI case on these two criteria, then one of these cases was randomly selected as the matched case for that ABI participant. Measures In both the normative and ABI studies, a semi-structured interview was first conducted to collect demographic and background information on all families who participated in the study. The primary measure used in the study was the SPRS-C. Socio-economic status was indicated by the Australian Bureau of Statistics (ABS) classification of occupation [30]. Sydney Psychosocial Reintegration Scale for Children (SPRS-C) [27] The SPRS-C, as described in the introduction, was used to measure psychosocial functioning. This scale, named the SPRS for Children (SPRS-C; [27]) yields the same three domains as the adult version: (1) Occupational Activities renamed Leisure and School Activities for the child version, (2) Interpersonal Relationships, and (3) Daily Living Skills. As with the adult version, the scale includes 12 items and uses a 5-point scale format. Respondents are asked to rate current functioning in these domains as ‘compared to other children of the same age’, on a scale of 0 to 4 (0 ¼ very poor, 1 ¼ a lot of difficulty, 2 ¼ some difficulty, 3 ¼ a little difficulty, 4 ¼ very good). The total score ranges from 0 to 48 with higher scores representing better levels of psychosocial reintegration. Scores on the SPRS-C may be grouped into

Sydney Psychosocial Reintegration Scale for Children

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three categories: (i) Good, average score 4, (ii) Limited, average score 2–3 and (iii) Poor, average score 0–1. The child, parent, and clinician versions of the SPRS-C have identical items with variations in phrasing as appropriate. For the parent and child versions, the SPRS-C is administered by the clinician to the parent/child in a face-to-face interview usually taking 15 to 20 min. The child self-report version is suitable for those aged 10 years and older. The clinician can also make ratings based on their knowledge of the child using the clinician version. Items of the SPRS-C are shown in Appendix A. Australian Bureau of Statistics (ABS) classification of occupation [31] The ABS classification of occupation skill level was used as an index of socio-economic status. A lower number on the scale represents a higher occupational skill level. The system comprises the following categories: 1 ¼ Managers, 2 ¼ Professionals, 3 ¼ Technicians/trade workers, 4 ¼ Community/personal service workers, 5 ¼ Clerical and Administration workers, 6 ¼ Sales workers, 7 ¼ Machinery operators and drivers, 8 ¼ Labourers. The score for the parent with the higher occupational skill level was used. Procedure (1) Normative study The parent form of responding would be the most common way of administering the scale in clinical practice and so the normative study focused on parent ratings of the SPRS-C. The collection of normative data on the SPRS-C was conducted as part of a larger study on the Paediatric Care and Needs Scale (PCANS) [32]. Approval to conduct the normative study was granted by the Human Research Ethics Committee of the Royal Children’s Hospital (Melbourne, Australia), and the state Department of Education and Early Childhood Development. Public schools in Melbourne, Australia were contacted and asked if they would distribute information about the study to parents by directly handing out information sheets or including a description of the study in their school newsletter. The parent then contacted the school or research team if they were interested in participating. For consenting families, parents were asked to attend a one-time face-to-face interview with the clinical researcher either at their child’s school (16.4%), home (52.3%) or other convenient location (e.g. in the parent’s workplace; 15.9%). If a faceto-face interview was difficult to arrange, the interview was conducted with the parent over the phone (15.4%). During the 1-h interview, the parent completed a semi-structured background interview, the SPRS-C, and a questionnaire on the child’s support needs. (2) Comparison between ABI and matched TDC groups The ABI data comprise a subset of a larger dataset published on psychosocial outcome in children and adolescents with ABI [17]. Approval to conduct this study was obtained from the ethics committee of the South East Sydney Area Health Service, Australia. Participants in the ABI group were children admitted to the BIRP at the Sydney Children’s Hospital during a 1-year period from June 2005 to June 2006. The total pool of eligible participants who met the selection

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criteria was 66. Attempts were made to contact all eligible participants, of which 26 families agreed to participate. A letter inviting families to participate was sent to potential participants. Those interested in participating in the study were asked to contact the hospital for further information. A follow-up phone call was made for those who did not respond to the letter to ask if they would like to participate. For those who agreed to participate, an appointment time for an interview with the parent and child was scheduled at either the hospital or in the family home. Signed informed consent was obtained prior to completing a 2-h interview with the parent and child/adolescent. Parents and children were asked to complete a semi-structured interview focusing on the family’s background details. Other neurocognitive and psychosocial measures were also collected as part of a larger published study [17]. Following completion of the interview, the clinical researcher (author, C. S.), who interviewed all families in this study, provided a SPRS-C clinical rating of each child based on the information provided by parents and children during the interview. Statistical analyses As assessed using guidelines provided by Tabachnick and Fidell [33], the majority of the data were not normally distributed and so a non-parametric approach was used where appropriate. Spearman correlation coefficients were examined to assess association between SPRS-C scores and child’s age as well as parent occupational skill level. Cohen’s [34] guidelines were used to interpret the size of the correlation coefficient. Mann–Whitney U tests were used to compare males and females on SPRS-C domain and total scores. Comparison between SPRS-C scores of children with ABI and the matched TDC sample was conducted using Mann–Whitney U tests. In all analyses, the alpha level was set at p50.01 to correct for multiple statistical comparisons.

Results Normative study Demographic and background information for the normative sample are shown in Table I. Children were aged between 5 years, 3 months, and 14 years, 11 months. Even numbers of males and females were achieved for most subgroups. The sample was fairly evenly spread across the ‘Like schools’ groups, though parents of children attending schools in Groups 1–3 (‘less disadvantaged’) were slightly over represented (39.5% of the total sample). Of the 200 parents interviewed, 195 were biological parents, 2 were step-parents and 3 were adoptive parents). Twenty-two percent participants in the sample spoke a language other than English at home. Mean SPRS-C domain scores across the 10 age groups ranged from 14.1 to 15.9 and median scores were either 15 or 16 (highest possible score on each domain subscale is 16); indicating psychosocial functioning in the higher ranges (Table II). As shown in Table III, the percentage of children who scored at ceiling for each of the items ranged from 71%

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(Item 2: learning/study skills) to 94% (Item 5: relationships with parents). The proportion of children scoring at ceiling levels for domain scores was 69% for the Daily Living Skills domain and 73% for Interpersonal Relationships. Correlation coefficients for SPRS-C scores with child’s age as well as parent occupational skill level were low and not statistically significant (Table IV; rs ¼ 0.01 to 0.14, NS) using the p50.01 criterion. Mann–Whitney U tests showed no significant differences between males and females for all domain and total SPRS-C scores (NS, p40.05). Comparison between ABI and matched TDC samples Table V displays demographic and background information for the ABI and matched TDC samples (n ¼ 26, each). As expected, equal proportions of males and females were represented in the two groups. Similarly, no statistical differences were found between groups in terms of age at assessment and parent occupational skill level (p40.05, NS). Mean age of injury or onset of illness was 8.98 years with average time post-injury 25.25 months in the clinical group. The majority of the ABI group had sustained a TBI (92.3%), with falls (46.2%) and motor vehicle accidents (34.6%) representing the most common cause of the TBI. In 59.1% of TBI cases, injuries were mild, 31.8% were severe and 9.1% were moderate. Comparison between ABI and matched TDC groups for SPRS-C School and Leisure Activities, Interpersonal Relationships, Daily Living Skills and total scores are shown in Figure 1. Mann–Whitney U tests indicated that children with ABI scored lower (poorer functioning) on all SPRS-C variables compared to those in the matched TDC group (p50.01).

Discussion This study describes normative data for the SPRS-C based on a sample of 200 children stratified into groups according to age and sex. These normative data apply to the parent version of the SPRS-C when administered in interview style with parent. These findings uniquely contribute to the literature given that no normative data currently exist on the SPSR-C and thus no empirical baseline is currently available for the use of this scale for clinical groups. The normative findings show that the SPRS-C neither correlated with the age of child nor parent occupational skill level. As expected, children across all age groups scored in the higher ranges. One should, however, also note that not all parents in the normative sample gave their child the maximum score of 4 (‘very good’). For example, 71% of the sample had maximum scores on Item 2 (learning/study skills) indicating that 29% of the sample scored 3 (‘a little difficulty’) or less – in keeping with variability of skills present in the normal population. By design, SPRS-C accounts for the age of the child as each item is framed ‘Compared to other children of the same age, how do you rate. . .’. We therefore expect that scores would be the higher ranges for children in the normative group. Our results, however, showed that although in higher ranges, not all scores were at the maximum with some parents providing lower ratings despite their child not being diagnosed with a developmental, neurological or behavioural disorder.

6 (n ¼ 20) n (%)

7 (n ¼ 20) n (%)

8 (n ¼ 20) n (%)

9 (n ¼ 20) n (%)

10 (n ¼ 20) n (%)

Child’s age (years) 11 (n ¼ 20) n (%)

12 (n ¼ 20) n (%)

13 (n ¼ 20) n (%)

14 (n ¼ 20) n (%)

Total (n ¼ 200) n (%)

a

LOTE, language other than English. Based on ABS classifications. b Includes n ¼ 14 only child cases. c Missing data for n ¼ 1.

Sex Male 10 (50.0%) 10 (50.0%) 10 (50.0%) 10 (50.0%) 10 (50.0%) 8 (40.0%) 9 (45.0%) 10 (50.0%) 10 (50.0%) 10 (50.0%) 97 (48.5%) Female 10 (50.0%) 10 (50.0%) 10 (50.0%) 10 (50.0%) 10 (50.0%) 12 (60.0%) 11 (55.0%) 10 (50.0%) 10 (50.0%) 10 (50.0%) 103 (51.5%) Informant Biological parent 20 (100%) 19 (95.0%) 20 (100%) 20 (100%) 19 (95.0%) 20 (100%) 19 (95.0%) 20 (100%) 20 (100%) 18 (90.0%) 195 (97.5%) Step parent 0 0 0 0 0 0 0 0 0 2 (10.0%) 2 (1.0%) Adoptive parent 0 1 (5.0%) 0 0 1 (5.0%) 0 1 (5.0%) 0 0 0 3 (1.5%) Parent occupation skill level M (SD)a 2.55 (1.23) 2.65 (2.01) 2.50 (1.73) 2.74 (1.56) 2.63 (2.06) 3.17 (2.33) 2.58 (1.68) 2.78 (1.35) 3.00 (2.38) 3.41 (1.62) 2.79 (1.81) ‘Like schools’ group 1–3 (‘less disadvantaged’) 7 (35.0%) 8 (40.0%) 11 (55.0%) 7 (35.0%) 9 (45.0%) 9 (45.0%) 6 (30.0%) 8 (40.0%) 9 (45.0%) 5 (25.0%) 79 (39.5%) 4–6 6 (30.0%) 4 (20.0%) 3 (15.0%) 6 (30.0%) 4 (20.0%) 3 (15.0%) 8 (40.0%) 7 (35.5%) 6 (30.0%) 8 (40.0%) 55 (27.5%) 7–9 (‘more disadvantaged’) 7 (35.5%) 8 (40.0%) 6 (30.0%) 7 (35.0%) 7 (35.0%) 7 (35.0%)c 6 (30.0%) 5 (25.0%) 5 (25.0%) 7 (35.0%) 65 (32.5%)c No. of children in family 1 2 (10.0%) 3 (15.0%) 2 (10.0%) 1 (5.0%) 0 0 2 (10.0%) 1 (5.0%) 3 (15.0%) 0 14 (7.0%) 2 10 (50.0%) 11 (55.0%) 7 (35.0%) 5 (25.0%) 9 (45.0%) 9 (45.0%) 8 (40.0%) 12 (60.0%) 10 (50.0%) 8 (40.0%) 89 (44.5%) 3 8 (40.0%) 5 (25.0%) 8 (40.0%) 12 (60.0%) 8 (40.0%) 7 (35.0%) 7 (35.0%) 4 (20.0%) 3 (15.0%) 2 (10.0%) 64 (32.0%) 4 0 1 (5.0%) 1 (5.0%) 1 (5.0%) 2 (10.0%) 3 (15.0%) 3 (15.0%) 3 (15.0%) 2 (10.0%) 6 (30.0%) 22 (11.0%) 5 0 0 1 (5.0%) 1 (5.0%) 0 1 (5.0%) 0 0 1 (5.0%) 5 (20.0%) 8 (4.0%) 6 0 0 0 0 1 (5.0%) 0 0 0 1 (5.0%) 0 2 (1.0%) 7 0 0 1 (5.0%) 0 0 0 0 0 0 0 1 (0.5%) Birth order Eldest 10 (50.0%) 13 (65.0%) 10 (50.0%) 9 (45.0%) 6 (30.0%) 6 (30.0%) 4 (20.0%) 10 (50.0%) 11 (55.0%) 7 (35.0%) 86 (43.0%)b Middle 6 (30.0%) 3 (15.0%) 6 (30.0%) 4 (20.0%) 3 (15.0%) 5 (25.0%) 8 (40.0%) 3 (15.0%) 4 (20.0%) 7 (35.0%) 49 (24.5%) Youngest 4 (20.0%) 4 (20.0%) 4 (20.0%) 7 (35.0%) 11 (55.0%) 9 (45.0%) 8 (40.0%) 7 (35.0%) 5 (25.0%) 6 (30.0%) 65 (32.5%) LOTE spoken at home 5 (25.0%) 4 (20.0%) 5 (20.0%) 6 (30.0%) 2 (10.0%) 6 (30.0%) 4 (20.0%) 3 (15.0%) 3 (15.0%) 6 (30.0%) 44 (22.0%)

5 (n ¼ 20) n (%)

Table I. Descriptive data for normative sample according to child’s age (N ¼ 200).

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14.8 1.74 15.9 0.37 15.8 0.41 46.4 1.93

Table III. Descriptives and percentage of normative sample with ceiling scores for SPRS-C items and domains (n ¼ 200).

SPRS-C

(15) (14–16) (16) (14–16) (16) (13–16) (47) (43–48)

Items 1. School (current status) 2. School (learning/study skills)

15.4 0.67 15.7 0.67 15.5 0.88 46.5 1.73

13 (n ¼ 20)

(15) (10–16) (16) (15–16) (16) (15–16) (47) (41–48)

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14 (n ¼ 20)

6

(16) (12–16) (16) (11–16) (16) (12–16) (47) (34–48)

5. Relationships (parent)

15.1 1.25 15.5 1.28 15.4 1.23 46.0 3.39

6. Relationships (family)

4. Organising activities

(16) (11–16) (16) (12–16) (16) (14–16) (47) (38–48) 15.1 1.33 15.6 1.00 15.7 0.57 46.4 2.56

7. Relationships (friends) 8. Communication 9. Social skills

(15) (8–16) (15) (11–16) (16) (12–16) (45) (33–48) 14.1 2.09 15.1 1.21 15.2 1.15 44.4 3.47

10. Self-care 11. Community travel 12. Everyday activities

(15) (12–16) (16) (14–16) (16) (14–16) (46) (43–48) 14.9 1.29 15.7 0.57 15.6 0.60 46.2 1.61

Domain scores: School and Leisure Activities Interpersonal Relationships Daily Living Skills

(15) (11–16) (16) (12–16) (16) (13–16) (47) (39–48)

Total score:

15.0 1.32 15.5 1.15 15.3 1.07 45.7 2.68

SPRS-C Domain score School and Leisure Activities Interpersonal Relationships Daily Living Skills Total score Highest domain score ¼ 16; highest total score ¼ 48.

Total score

Daily Living Skills

15.05 (16) 1.38 (8–16) 15.55 (16) 1.00 (9–16) 15.50 (16) 0.96 (11–16) 46.10 (47) 2.68 (33–48)

n (%) 184 (92%) 142 (71%) 169 (84.5%) 153 (76.5%) 188 (94%) 187 (93.5%) 170 (85%) 174 (87%) 175 (87.5%) 173 (86.5%) 180 (90%) 182 (91%) 104 (52%) 146 (73%) 138 (69%) 80 (40%)

Table IV. Spearman rho correlation coefficients for SPRS-C scores with child’s age and parent occupation skill in normative sample (N ¼ 200).

15.3 (16) 1.17 (13–16) 15.5 (16) 1.57 (9–16) 15.5 (16) 1.19 (12–16) 46.3 (48) 3.49 (34–48) Interpersonal Relationships

3.93 (4) 0.26 (3–4) 3.60 (4) 0.70 (1–4) 3.81 (4) 0.49 (2–4) 3.72 (4) 0.55 (1–4) 3.94 (4) 0.24 (3–4) 3.94 (4) 0.25 (3–4) 3.84 (4) 0.41 (1–4) 3.84 (4) 0.48 (1–4) 3.85 (4) 0.43 (1–4) 3.85 (4) 0.42(2–4) 3.90 (4) 0.32 (2–4) 3.91 (4) 0.31(2–4)

Ceiling score obtained

Highest item score ¼ 4; highest domain score ¼ 16; highest total score ¼ 48.

(16) (11–16) (16) (13–16) (16) (12–16) (48) (36–48) 15.5 1.24 15.8 0.72 15.6 0.94 46.9 2.80 (16) (14–16) (16) (14–16) (16) (11–16) (47) (40–48) 15.5 0.76 15.4 0.81 15.5 1.15 46.4 2.06 Domain score School and Leisure Activities

10 (n ¼ 20) 9 (n ¼ 20) 5 (n ¼ 20)

6 (n ¼ 20)

7 (n ¼ 20)

8 (n ¼ 20)

Child’s age (years)

Mean (Median) SD (min–max) Table II. SPRS-C data for normative sample according to child’s age (n ¼ 200).

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11 (n ¼ 20)

12 (n ¼ 20)

3. Leisure

Mean (median) SD (min–max)

Child’s age

Parent occupation skill levela

0.14* 0.07 0.01 0.08

0.03 0.07 0.01 0.02

a

Based on ABS classification. *p50.05;**p50.01.

These findings underscore to the importance of obtaining normative data for comparison with clinical groups. Findings from the ABI study provide support for the ability of the SPRS-C to identify psychosocial difficulties in children with ABI compared to TDC. These findings differ from recent work on the SPRS-C by Green et al. [13] who reported no group differences on the SPRS-C between adolescents with TBI aged 15–18 years (n ¼ 17) and a TDC group (n ¼ 16). They found, however, that when severity of injury was entered in the analysis, clinically significant deficits emerged for the School and Leisure Activities and Daily Living Skills domains. It is likely that differences in findings are due to

Sydney Psychosocial Reintegration Scale for Children

DOI: 10.3109/17518423.2014.1000504

7

Table V. Demographic data and injury data for ABI (n ¼ 26) and matched TDC groups (n ¼ 26). ABI (n ¼ 26) M (SD) Age at assessment (years) Age at injury/onset (years) Time post-injury/onset (months) Parent occupation skill levela

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Sex Males Females Cause of injury Non-TBI (Stroke, tumour) TBI – Total MVA Fall Bicycle/sports GCS in TBI casesb Mild Moderate Severe

11.21 8.98 25.25 3.23

(2.32) (2.33) (5.98) (2.02)

n (%) 19 (73.9%) 7 (26.1%) 2 24 9 12 3

Matched control (n ¼ 26) min–max

7.12–14.96 4.64–13.12 13.53–35.73 1–8

M (SD) 11.16 (2.25) – – 2.85 (1.54) n (%) 19 (73.9%) 7 (26.1%) –

min–max 7.00–14.67 – – 1–7

–

(7.7%) (92.3%) (34.6%) (46.2%) (11.5%) –

–

13 (59.1%) 2 (9.1%) 7 (31.8%)

GCS, Glasgow coma scale; MVA, Motor vehicle accident. Based on ABS classification. b Data are available for n ¼ 22. a

Figure 1. SPRS-C domain and total scores for ABI (n ¼ 26) and matched TDC groups (n ¼ 26).

methodological factors which may make these studies not directly comparable. Green et al.’s SPRS-C ratings for the ABI group were based on self-report whereas our study used clinical SPRS-C ratings based on face-to-face interviews with both parents and children. There are three informant versions of the SPRS-C and it would be ideal to compare results from the same informant versions. Although studies with adults with TBI have shown good concordance between clinician and parent/relative ratings on the comparable adult SPRS form (ICC ¼ 0.67) [23], future research should examine relationship between proxy ratings further, specifically using the SPRS-C. Findings demonstrating that children and adolescents with ABI have lowered SPRS-C scores compared to TDC is

consistent with findings in the broader literature examining psychosocial functioning following ABI. The main domains assessed by the SPRS-C include engagement in school and leisure activities, interpersonal relationships and everyday activities. Numerous studies have documented difficulties in these areas after ABI including reduced adaptive functioning abilities [14, 35], social functioning difficulties [36–39], poorer quality of interpersonal relationships or fewer friends [38, 40], and lowered participation in everyday activities such as in the home, school, and community [5]. Further, in an attempt to understand the factors underlying these difficulties, a substantial body of research exists on identifying predictors to account for psychosocial difficulties, focusing on variables such as pre-injury

8

C. Soo et al.

functioning, child’s age at injury, injury severity, and social context [41, 42].

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Strengths and limitations Our results comparing ABI and TDC groups are considered preliminary as a weakness of our study was the comparison of two groups of children who were rated on the SPRS-C by different informants. That is, we compared clinician ratings on the SPRS-C in the ABI group with parent ratings in the TDC group. Different types of informants have their own perspectives on a person’s functioning which may lower concordance rates. We note, however, past studies have found good concordance between parent and clinical ratings using the comparable adult SPRS form [23]; while other researchers have examined a combination of parent/relative and selfratings of SPRS and other neurobehavioural measures [43]. Nevertheless, studies which specifically examine how parent ratings on the SPRS-C are related to clinical ratings in paediatric samples are required. In addition, our comparison of ABI and TDC is also limited by our clinician ratings in the ABI group. The clinician had knowledge of ABI status and thus these ratings could be biased by this information, perhaps introducing more severe ratings. The above limitations need to be taken into account when interpreting these findings and future research addressing comparable informant ratings and blindedness of clinical ratings need to be undertaken to confirm these preliminary results The strength of the normative study was that we aimed to sample evenly across age groups in terms of background and socio-economic factors. Although providing normative data on a final sample size of 200 participants, with 20 in each of the 10 age ranges provides a good foundation for the clinical use of the SPRS-C, it could be argued that this is a relative small sample size. On the other hand, it is not uncommon to have relatively smaller samples sizes for normative studies of scales used in specific disability populations [44]. Moreover, in using our sample of N ¼ 200 we have shown ceiling effects on many of the items of the scale which may place less importance of obtaining a larger sample size. Future directions There are several advantages of the SPRS-C. It is a short, easy-to-use scale which covers domains of functioning research and clinical experience show is relevant for people with ABI. The SPRS-C also has versions for obtaining perspectives of the child, parent and clinician. The two studies presented here are important contributions to the pool of psychometric evidence for SPRS-C, but there is scope for future research. Although sound reliability estimates have been found for the SPRS in adult ABI samples, a series of reliability studies need to be conducted on the SPRS-C. Our group is currently embarking on studies of test–retest and inter-rater reliability of the SPRS-C. Future research could also investigate the validity of the SPRS-C in other clinical groups. To date, the SPRS-C has been used only in ABI groups, but in terms of the content and usability, the scale could apply to children with a number of other neurological and health conditions.

Dev Neurorehabil, Early Online: 1–9

These normative data on SPRS-C provide essential baseline information for measuring psychosocial functioning in children with ABI, allowing a guide for clinical interpretation of the SPRS-C. These findings contribute to the growing pool of psychometric evidence for the validity of SPRS-C for children and adolescents with ABI. The availability of psychometrically robust and simple to administer measures designed for specific populations is essential, enabling health professionals to tailor and improve intervention strategies in these groups, as well as monitor rehabilitation progress over time.

Acknowledgements We acknowledge Vivienne Champness for her assistance with data collection. We also wish to thank all participants and their families who took part in this research.

Declaration of interest This research was part of larger studies funded by the Lifetime Care and Support Authority of New South Wales. Additional funding was provided by Murdoch Children’s Research Institute. The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

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Appendix A: SPRS-C items (1) (2) (3) (4) (5) (6) (7) (8) (9) (10) (11)

School attendance status Learning/study skills Involvement in leisure activities Ability to organising activities Relationship with parents Relationship with other family members Relationship with friends Communication skills Social skills Ability to perform self-care tasks Ability to travel in the community and follow safety rules (12) Ability to perform age appropriate everyday activities (e.g. making a simple snack, shopping at local shops for a few items)