Using a biopsychosocial approach to examine parental sense of burden and competency associated with raising a child with a physical disability.

BACKGROUND: Parents report both positive and negative experiences associated with raising a child with a physical disability. However, distinctive factors may affect children and families differently. AIMS: Using a biopsychosocial approach, the current study expands on the existing literature on the general impact of raising a child with a disability. METHODS: Participants were 98 parents of children/youth with a physical disability. Parents reported on child's level of physical disability, the impact of the disability on the family (financial, social, personal strain and mastery) and their general health. Data were analysed to examine how different biopsychosocial factors are associated with raising a child with a physical disability. RESULTS: Parents reported that child's disability had a higher social impact, compared with the financial and personal burden, as well as compared with their sense of competency and mastery. Child's level of disability was associated with financial burden, whereas parental emotional distress was associated with parents' personal and social burden, with the latter also associated with parent's religiosity. Total impact was associated with parental emotional distress and educational level. CONCLUSIONS: Altogether, parental characteristics, but not child's characteristics, were associated with greater caregiver burden. Furthermore, the social impact a child's physical disability has on the family exceeded other sources of burden within the family. Providing parents social and emotional support, tailored to their unique biopsychosocial needs, may mitigate burden and distress, and increase sense of competency among families of children with a physical disability.

Sense of autonomy and daily and scholastic functioning among children with cerebral palsy.

BACKGROUND: There is growing evidence that children's sense of autonomy is an important psychological need closely linked with the development of self-esteem and motivation. Among children with physical disabilities, motor or cognitive limitations may negatively affect child's sense of autonomy (CSA) and competency. PURPOSE: To examine how sense of autonomy among children with cerebral palsy (CP) directly and indirectly relates to their activity of daily living (ADL) and scholastic performance. METHODS: Seventy-three children with CP and their mothers participated in this study. Child's ADL skills and scholastic performance were assessed using the Pediatric Evaluation Disability Inventory (PEDI) and the Scholastic Skills Rating Scale (SSRS), respectively. Level of impairment was assessed using the Gross Motor Function Measure-66 (GMFM-66). CSA was established via videotaped mother-child interactions. Regression analyses were conducted to examine factors predicting child's functional level (ADL and scholastic). The overall model was tested for goodness-of-fit and test of mediation. RESULTS: GMFM and CSA significantly predicted child's ADL and scholastic functioning. GMFM explained 15% of the variance for CSA, 84% for PEDI, and 24% for scholastic functioning. CSA positively mediated the association between GMFM and child's ADL skills. GMFM was positively associated with CSA. CONCLUSION: Motor impairment has a substantial impact on child's level of functioning. However, child's functioning is a complex construct that is also affected by her or his sense of autonomy. Therefore, sense of autonomy can serve as a potential point of intervention to improve functioning among children with CP.

Discrepancies between mothers and clinicians in assessing functional capabilities and performance of children with cerebral palsy.

The current study is a cross-sectional study that aimed to investigate the concordance between health care professionals (HCPs) and mothers in rating capabilities and performance of children with cerebral palsy (CP), and the impact of CP gross motor severity on concordance. Seventy-three children with mild-to-severe CP (mean age 8.8 ± 2.10 years) and their mothers participated in this study. Two modes of Pediatric Evaluation Disability Inventory (PEDI) administration were used: mothers' interview by a social worker and HCPs' actual evaluation. Differences between raters were assessed by paired t-tests and intra-class correlation coefficients (ICCs). Agreement was defined as mean absolute difference of less than or equal to six points. The results indicated that in spite of excellent overall ICCs in PEDI (ICC>0.8), disagreement between raters was observed in all PEDI sub-domains: 38%, 56%, 72% and 59% disagreement in Functional Skills-Mobility, Functional Skills-Self Care, Caregiver Assistance-Mobility (CA-MO) and Caregiver Assistance-Self Care (CA-SC), respectively. In CA-SC and CA-MO disagreement mainly consisted of mothers rating their children lower in performance than HCPs. CP severity effected the agreement mostly in children with moderate CP severity. The implications of these results are that raters perceive child's activity differently, hence revealing hidden disability perceptions, with significant consequences for intended interventions.

Reliability and validity of Hebrew Pediatric Evaluation of Disability Inventory (PEDI) in children with cerebral palsy -- health care professionals vs. mothers.

AIM: To evaluate the reliability and validity of the PEDI in Hebrew (PEDI-H) in children with cerebral palsy (CP) using health care professionals' (HCP) and mothers' evaluations. METHODS: The sample comprised 73 participants (40 males, 33 females) with CP. Two modes of PEDI-H administration were used: interview of the mothers by a social worker and HCP evaluation. PEDI-H reliability was examined by two modes: 1) internal consistency via Cronbach's alpha and 2) overall absolute agreement within subject reliability via intraclass correlation coefficient (ICC). Discriminative validity using collapsed strata of the Gross Motor Functional Classification System (GMFCS) (area under the curve=AUC) were examined for each of the PEDI-H sub-domains. RESULTS: Participants' mean age was 8 years 8 months (standard deviation (SD) 2 years 10 months). The reliability of mothers' PEDI-H was good-to-excellent (Cronbach's alpha=0.889-0.964, ICC=0.845-0.938). The HCPs' reliability was excellent (Cronbach's alpha and ICCs > 0.90). The PEDI-H was also reliable in children with mild, moderate, and severe CP (GMFCS=I+II, III and IV+V, respectively), in younger (6-7 years) and older children (8-12 years), and in children with various CP distribution. Mothers and HCPs had low accuracy in Social-Function domains (AUC=0.538-0.686) and moderate-to-high accuracy in Mobility and Self-Care domains (AUC=0.887-0.967). PEDI-H was able to distinguish between children with various CP severities. CONCLUSION: The PEDI-H has good psychometric properties when administered by mothers and HCPs and can be used in older children with CP.