Autonomy in participation in cerebral palsy from childhood to adulthood

Aim To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. Method Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12-34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (pIndividuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains. Regarding intimate relationships, they continued to have less experience compared to age-matched references. Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V.</p

Measures used to assess impact of providing care among informal caregivers of persons with stroke, spinal cord injury, or amputation:a systematic review

Purpose: (1) To identify measures used to evaluate the impact of caregiving among caregivers of persons with stroke, spinal cord injury, and amputation; and (2) to systematically evaluate their clinimetric properties reported in validation studies. Materials and methods: Two separate systematic reviews (Embase, PsycINFO, CINAHL, Pubmed/Medline) were conducted. COSMIN guidelines were used to assess clinimetric properties and methodological quality of studies. Results: (1) 154 studies published between 2008 and May 2019 were included, in which 48 measures were used, mostly describing negative impact. Thirty measures were used only once and not further described. (2) In general, structural validity, internal consistency, and hypothesis testing were often investigated. Reliability, cross-cultural and criterion validity to a lesser extent, and scale development and content validity were rarely described. Tests of measurement error and responsiveness were exceptional. Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire. Conclusions: There is a wide variety of impact of caregiving measures. The present study provided a detailed overview of what is known about clinimetric characteristics of 18 different measures repeatedly used in research. The overview provides clinicians a guidance of appropriate measure selection. PROSPERO registration: CRD4201809479

Prediction of Psychological Distress Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others

Objectives: To identify intra- and interpersonal sociodemographic, injury-related, and psychological variables measured at admission of inpatient rehabilitation that predict psychological distress among dyads of individuals with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others (ie, individuals close to the individual with a disability, mostly family members) 6 months after discharge. Differences in predictors were investigated for persons with SCI or ABI and their significant others and were compared between diagnoses. Design: Prospective longitudinal study. Setting: Twelve Dutch rehabilitation centers. Participants: Dyads (N= 157) consisting of adults with SCI or ABI who were admitted to inpatient rehabilitation and their adult significant others. Interventions: Not applicable. Main Outcome Measures: Psychological distress (Hospital Anxiety and Depression Scale). Results: Sociodemographic and injury-related variables were not or were only weakly associated with psychological distress among individuals with SCI or ABI and their significant others 6 months after discharge. Bivariately, higher baseline psychological distress, lower scores on adaptive psychological characteristics (combination of self-efficacy, proactive coping, purpose in life, resilience), and higher scores on maladaptive psychological characteristics (combination of passive coping, neuroticism, appraisals of threat and loss) were related to higher psychological distress, as well as crosswise between individuals with SCI or ABI and their significant others, although less strongly. Combined prediction models showed that psychological distress among persons with SCI or ABI was predicted by education level of their significant other, their own baseline psychological distress, and their own maladaptive psychological characteristics (explained variance, 41.9%). Among significant others, only their own baseline psychological distress predicted psychological distress (explained variance, 40.4%). Results were comparable across diagnoses. Conclusions: Although a dyadic connection was shown, primarily one's own baseline psychological distress and psychological characteristics were important in the prediction of later psychological distress among both individuals with SCI or ABI and their significant others. Screening based on these variables could help to identify persons at risk for psychological distress. (C) 2020 by the American Congress of Rehabilitation Medicin

Self-Efficacy Predicts Personal and Family Adjustment Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others:A Dyadic Approach

Objectives: To investigate whether the combination of self-efficacy levels of individuals with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others, measured shortly after the start of inpatient rehabilitation, predict their personal and family adjustment 6 months after inpatient discharge. Design: Prospective longitudinal study. Setting: Twelve Dutch rehabilitation centers. Participants: Volunteer sample consisting of dyads (N=157) of adults with SCI or ABI who were admitted to inpatient rehabilitation and their adult significant others. Interventions: Not applicable. Main Outcome Measures: Self-efficacy (General Competence Scale) and personal and family adjustment (Hospital Anxiety and Depression Scale and McMaster Family Assessment Device General Functioning). Results: In 20 dyads, both individuals with SCI or ABI and their significant others showed low self-efficacy at baseline. In 67 dyads, both showed high self-efficacy. In the low-self-efficacy dyads, 61% of the individuals with SCI or ABI and 50% of the significant others showed symptoms of anxiety 6 months after discharge, vs 23% and 30%, respectively, in the high-self-efficacy dyads. In the low-self-efficacy dyads, 56% of individuals with SCI or ABI and 50% of the significant others reported symptoms of depression, vs 20% and 27%, respectively, in the high-self-efficacy dyads. Problematic family functioning was reported by 53% of the individuals with SCI or ABI and 42% of the significant others in the low-self-efficacy dyads, vs 4% and 12%, respectively, in the high-self-efficacy dyads. Multivariate analysis of variance analyses showed that the combination of levels of self-efficacy of individuals with SCI or ABI and their significant others at the start of inpatient rehabilitation predict personal (V=0.12; F-6,F-302=2.8; P=.010) and family adjustment (V=0.19; F-6,F-252=4.3; P Conclusions: Low-self-efficacy dyads appear to be more at risk for personal and family adjustment problems after discharge. Screening for self-efficacy may help healthcare professionals to identify and support families at risk for long-term adjustment problems. (C) 2020 by the American Congress of Rehabilitation Medicine. Published by Elsevier Inc

Effects of family group conferences among high-risk patients of chronic disability and their significant others:study protocol for a multicentre controlled trial

INTRODUCTION: Many patients and family members experience a large gap between the protected environment during inpatient medical rehabilitation and life in the community after discharge. They feel insufficiently prepared to cope with the consequences of their disability in daily life. This study protocol describes the design measuring the effectiveness and implementation of family group conferences on the empowerment of patients with a high risk of chronic disability and their significant others. METHODS AND ANALYSIS: A multicentre controlled trial will be carried out in 12 rehabilitation centres in the Netherlands. A total of 328 clinically admitted patients will participate (≥18 years, diagnosed with acquired brain injury, spinal cord injury or leg amputation), and their significant others will be included. During three family group conferences, supported by the social worker, the patient, significant other and their social network will be stimulated in collaboration, to set up participation goals, determine the needed help and make a concrete action plan. Self-reported questionnaires will be collected at baseline, clinical discharge, and 3 months and 6 months following clinical discharge. Empowerment as the primary outcome is operationalised as self-efficacy and participation. Secondary outcome measures are psychological (eg, coping, neuroticism) and environmental (eg, family functioning, social support) factors. This is the first controlled trial evaluating the effectiveness of family group conferences in rehabilitation medicine among adult patients and their significant others, providing us with knowledge in improving rehabilitation care. ETHICS AND DISSEMINATION: This study has been approved by the Medical Ethics Committee of the University Medical Center Utrecht (number 15-617/C). The results will be published in peer-reviewed journals and presented in local, national and international conferences. TRIAL REGISTRATION NUMBER: NTR5742; Pre-results

Focus on autonomy: Using 'Skills for Growing Up' in pediatric rehabilitation care

PURPOSE: Youth with disabilities face challenges regarding achieving autonomy. The 'Skills for Growing Up' tool was adapted for use in Dutch pediatric rehabilitation (SGU-D) to support development of autonomy. This study presents the experiences with the SGU-D tool. METHODS: The SGU-D was implemented in 18 settings, of which 4 participated in the evaluation. Rehabilitation professionals were trained in the use of the SGU-D. In a qualitative study, participants were interviewed for their opinions regarding the tool. RESULTS: Experience with the SGU-D was evaluated in 11 youth with disabilities, 11 parents and 8 rehabilitation professionals. They perceived the SGU-D as a helpful tool: i) to support development of autonomy, ii) to focus on future perspectives, and iii) to facilitate communication with family and rehabilitation professionals. Additional support from rehabilitation professionals on using the SGU-D was appreciated. CONCLUSION: Youth with disabilities, their parents and rehabilitation professionals value the SGU-D as a practical tool for working on autonomy, and to identify important areas of development

Participation in physical play and leisure : developing a theory- and evidence-based intervention for children with motor impairments

Peer reviewedPublisher PD

Development curves of communication and social interaction in individuals with cerebral palsy

Aim: To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP). Method: This Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow-up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age90) using nonlinear mixed-effects modeling. Results: One-hundred individuals without intellectual disability were aged 21 to 34 years at follow-up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty-one individuals with intellectual disability were between 21 and 27 years at follow-up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large. Interpretation: Individuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development. What this paper adds: Communication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals. Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation

Appraisals and coping mediate the relationship between resilience and distress among significant others of persons with spinal cord injury or acquired brain injury: A cross-sectional study

Background: Many significant others of persons with serious conditions like spinal cord injury (SCI) and acquired brain injury (ABI) report high levels of psychological distress. In line with the stress-coping model, the aim of the present study was to investigate the relationship between personal resource resilience and psychological distress, and whether appraisals of threat and loss, and passive coping mediate this relationship. Methods: Significant others (n = 228) of persons with SCI or ABI completed questionnaires shortly after admission to first inpatient rehabilitation after onset of the condition. The questionnaire included measures to assess psychological distress (Hospital Anxiety and Depression Scale), resilience (Connor-Davidson Resilience Scale-10), appraisals (Appraisals of Life Events scale, threat and loss) and passive coping (Utrecht Coping List). The PROCESS tool was used to test the presence of mediation. Confounding and differences between SCI and ABI were investigated. Results: High levels of psychological distress among significant others were found (34-41%). Fifty-five percent of the variance in psychological distress was explained by the relationship between resilience and psychological distress. This relationship was mediated by appraisals of threat and loss, and passive coping. The relationship between resilience and psychological distress was similar in the SCI and ABI groups. Conclusions: The results of our study indicate that appraisals of threat and loss and passive coping are mediating factors in the relationship between resilience and psychological distress. It seems useful to investigate if interventions focussing on psychological factors like resilience, appraisal and coping are effective to prevent or reduce psychological distress among significant others of persons with SCI or ABI