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

Development of the Self-Regulation Assessment (SeRA) and content validation using cognitive interviews in a multicultural post-rehabilitation population

Aim: Self-regulation is one of the main goals of medical rehabilitation. Four themes of self-regulation were identified by former patients and rehabilitation physicians in a previous study. Based on these themes, a measure for self-regulation, the self-regulation assessment (SeRA), was developed. This study aimed to establish the content validity of the SeRA in a multicultural and multi-diagnostic post-rehabilitation population. Methods: The Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology was applied. First, cognitive interviews were held with eight former rehabilitation patients. Feedback was obtained on relevance, comprehensibility, and comprehensiveness of the items. Items with problems were revised. Then, a second series of cognitive interviews was held with 16 former rehabilitation patients with non-Western migration backgrounds. Again, feedback was obtained on relevance, comprehensibility, and comprehensiveness of the items. Results: The first series of cognitive interviews revealed good comprehensiveness, and also comprehensibility or relevance problems with 12 of the 25 items. These items were revised or deleted. Two missing concepts were identified and these were added. There was no need to revise the items based on the results of the second series of cognitive interviews. Conclusion: The final version of the SeRA demonstrated content validity for the studied population. The measure is ready for psychometric analyses in subsequent validation studies

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 Medicine</p

Assessing participation in adolescents with cerebral palsy Comparison of Life-Habits and USER-Participation

Objective: To explore and compare the contents and scores of the Assessment of Life Habits (Life-H) with the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in adolescents with cerebral palsy. Design: Youth versions of both instruments were used for (1) content comparison and (2) analyses of relations between both instruments, based on cross-sectional data. Setting: Clinic. Participants: Participants were adolescents with cerebral palsy, aged 12-18 years; Gross Motor Function Classification System I-V; N=45. Interventions: Not applicable. Main outcome measures: Assessment of Life Habits (Life-H) with USER-Participation. Results: Both instruments measure independence in participation, called accomplishment (Life-H) and restrictions (USER-Participation), and satisfaction with participation. Life-H provides a profile of 6 domain scores and the USER-Participation a total score per dimension. Compared with the USER-Participation, the Life-H contains more specific items, more items not-applicable to many participants and more ceiling effects. Total scores on the accomplishment/restrictions and satisfaction scales between both instruments showed strong correlation coefficients (0.87 and 0.67, respectively). Correlations between domain scores were stronger within the accomplishment/restrictions scales (range 0.37-0.88) compared with the satisfaction scales (range 0.22-0.68). Conclusions: Compared with the USER-Participation, the Life-H takes more effort to complete but provides a more comprehensive assessment of participation. Participation accomplishment/restrictions scores were more similar between the instruments compared with satisfaction scores. Researchers and clinicians should carefully compare participation instruments in selecting one that matches their purpose

Participation and autonomy in the first 10 months after diagnosis of ALS:a longitudinal study

Introduction: More insight is needed into participation in daily activities and autonomy among patients with amyotrophic lateral sclerosis (ALS). Aims of this study were (1) to describe the course of participation restrictions and autonomy in participation during the first 10 months after diagnosis; (2) to study the influence of the rate of ALS progression on the course of participation. Methods: Secondary analysis of data from the longitudinal multicenter FACTS-2-ALS study. Self-report questionnaires were administered at inclusion (T0; n = 71), at 4 months (T1), 7 months (T2), 10 months (T3) after inclusion. Median duration of follow-up was 10.0 months. Participation restrictions were assessed using the sum of the Mobility Range and Social Behavior subscales of the Sickness Impact profile-68 (SIPSOC). Autonomy in participation was assessed using the Impact on Participation and Autonomy (IPA) Questionnaire. Fast disease progression was defined as an increase of 1.1 points per month or more on the ALS Functional Rating Scale. Results: Patients reported participation restrictions in all subscales while having mild physical limitations. There was a decrease of participation over time (restrictions and autonomy). This decrease was greatest in patients with fast disease progression. Disease progression negatively influenced movement-related participation more than social interaction domains. Rate of disease progression was more strongly related to SIPSOC scores compared to IPA scores. Discussion: Preserving participation may be an important determinant of quality of care for patients with ALS. Rate of progression of the disease should be taken into account as it was found to be significantly associated with the level of participation

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

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

Relationship between impulsivity, snack consumption and children's weight

Background: Childhood overweight is a public health problem associated with psychosocial and physical problems. Personality traits, such as impulsivity, may contribute to the development of overweight. Objective: This study examines 1) the association between general impulsivity traits (reward sensitivity and disinhibition) and children's weight, 2) the association between impulsivity traits and unhealthy snack consumption, and 3) the potential mediating role of unhealthy snack consumption in the relationship between impulsivity traits and children's weight. Methods: Included were 1,377 parent-child dyads participating in the IVO Nutrition and Physical Activity Child cohorT (INPACT). Children had a mean age of 10 years. Parents completed a questionnaire to measure children's unhealthy snack consumption. Children completed a door-opening task to assess reward sensitivity and completed a questionnaire to measure disinhibition. Children's height and weight were measured to calculate their BMI z-scores. Cross-sectional linear regression analyses were performed to test the associations. Results: Disinhibition was positively associated with unhealthy snack consumption but not with BMI z-scores. Reward sensitivity was not related to unhealthy snack consumption or to BMI z-scores. Conclusions: No evidence was found for a mediating effect of unhealthy snack consumption in the relation between impulsivity traits and children's weight. However, disinhibition appears to have a negative influence on children's unhealthy snack consumption. Future research focusing on food-related impulsivity in addition to general impulsivity will provide additional insight into factors that influence children's unhealthy snack consumption and weight

Using self-regulation assessment to explore associations between self-regulation, participation and health-related quality of life in a rehabilitation population

Objective: Self-regulation, participation and health-related quality of life are important rehabilitation outcomes. The aim of this study was to explore associations between these outcomes in a multi-diagnostic and heterogenic group of former rehabilitation patients.Methods: This cross-sectional survey used the Self-Regulation Assessment (SeRA), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) and the Patient-Reported-Outcome-Measurement-System (PROMIS) ability and PROMIS satisfaction with participation in social roles, and the EuroQol-5L-5D and PROMIS-10 Global Health. Regression analyses, controlling for demographic and condition-related factors, were performed.Results: Respondents (n=563) had a mean age of 56.5 (standard deviation (SD) 12.7) years. The largest diagnostic groups were chronic pain disorder and brain injury. In addition to demographic and condition-related factors, self-regulation subscales explained 0–15% of the variance in participation outcome scores, and 0–22% of the variance in HRQoL outcome scores. Self-regulation subscales explained up to 22% of the variance in satisfaction subscales of participation (USER-Participation and PROMIS) and the mental health subscale of the PROMIS-10. Self-regulation subscales explained up to 11% of the restriction and frequency subscales of participation (USER-Participation) and the physical health subscale of the PROMIS-10.Conclusion: Self-regulation is more strongly associated with outcomes such as satisfaction with participation and mental health compared with outcomes such as restrictions in participation and physical health.</p

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