Provided support, caregiver burden and well-being in partners of persons with spinal cord injury 5 years after discharge from first inpatient rehabilitation.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: To describe type and regularity of support given by partners for individuals with paraplegia versus tetraplegia 5 years after discharge from first inpatient rehabilitation; to describe perceived caregiver burden, mental health and life satisfaction among partners; and to analyse determinants of perceived burden and the partner's mental health and life satisfaction. SETTING: The Netherlands. METHODS: Participants were partners of persons with spinal cord injury (SCI) 5 years after discharge from first inpatient rehabilitation (N = 67). Participants completed a self-report questionnaire. Provided support was assessed with an existing scale consisting of 25 activities for which partners could indicate how often they provide support to the patient. Caregiver burden was assessed with the Caregiver Strain Index. Mental health was measured with the Short-Form Health Survey 36 (mental health subscale), and life satisfaction was measured with the Life Satisfaction Questionnaire. RESULTS: Five years after inpatient rehabilitation, partners provided support with a large variety of activities. How often and in which activities partners provided support was associated with lesion level. About 43% of the partners experienced high levels of caregiver burden. Provided support was related to perceived burden (rS = 0.58) and life satisfaction (rS = -0.24), and burden was negatively related to mental health (rS = -0.47) and life satisfaction (rS = -0.67). CONCLUSIONS: High levels of perceived burden among partners and the associations between higher burden with lower well-being show the importance to prevent caregiver overload in partners of individuals with SCI. Monitoring burden during regular rehabilitation visits may help to early detect burden.

Mental health and life satisfaction of individuals with spinal cord injury and their partners 5 years after discharge from first inpatient rehabilitation.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: To describe and compare mental health and life satisfaction between individuals with spinal cord injury (SCI) and their partners 5 years after discharge from first inpatient rehabilitation; and to examine if injury severity moderates the association between individuals' with SCI and their partners' mental health and life satisfaction. SETTING: Dutch community. METHODS: Sixty-five individuals with SCI and their partners completed a self-report questionnaire. Main outcome measures were the mental health subscale of the Short-Form Health Survey and the Life Satisfaction Questionnaire. RESULTS: Levels of mental health and life satisfaction of individuals with SCI and partners were similar, with median scores of 76 and 4.8 versus 76 and 4.6, respectively. Moderate to strong correlations between individuals with SCI and their partners were found for the mental health (rS = 0.35) and life satisfaction scores (rS = 0.51). These associations were generally stronger in the subgroup of individuals with less severe SCI. Associations between scores on separate life domains ranged from negligible (0.05) to moderate (0.53). Individuals with SCI and their partners were least satisfied with their 'sexual life'. Compared with their partners, individuals with SCI were significantly more satisfied in the domains 'leisure situation', 'partnership relation' and 'family life', and less satisfied in 'self-care ability'. CONCLUSIONS: This study showed similarities but also differences in mental health and life satisfaction between individuals with SCI and their partners. In clinical practice, attention on mental health and life satisfaction should, therefore, focus on different domains for individuals with SCI and partners.

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: CRD42018094796IMPLICATIONS FOR REHABILITATIONClinicians should be aware that information about measure development and clinimetric properties for most measures used to assess impact of informal caregiving is incomplete.Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire.This overview of clinimetric properties provides clinicians guidance for selection of an appropriate measure.

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. TRIAL REGISTRATION: Dutch trial register NTR5742. Registered January 9, 2016.

Family group decision-making interventions in adult healthcare and welfare: a systematic literature review of its key elements and effectiveness.

BACKGROUND: Family group decision-making (FGDM) is a structured decision-making process, aiming to shift the balance of power from professional towards the person in need and their family. It differentiates from other family-centred meetings by the presence of three key elements: (1) plan with actions/goals, (2) family driven, (3) three phases of meetings gradually increasing empowerment. FGDM studies are increasing in different settings in adult healthcare/welfare, although effectiveness is unknown at this date. OBJECTIVES: (1) to systematically review the presence of the three FGDM key elements in family-centred interventions in adult care and welfare, (2) to evaluate the effectiveness of FGDM interventions. DESIGN: Systematic review. DATA SOURCES AND ELIGIBILITY CRITERIA: A total of 14 relevant electronic databases and 1 academic search machine were searched until February 2018. First, family-centred studies were selected with controlled trial designs in adult healthcare/welfare. Second, interventions were categorised as FGDM if all three key elements were present. DATA EXTRACTION AND SYNTHESIS: Studies were examined concerning their (1) characteristics (2) quality/level of evidence (3) presence of FGDM key elements and (4) results. RESULTS: Six articles from three studies on family-centred interventions were selected from a total of 1680 articles. All were of low quality. One study (two articles) met all criteria for an FGDM intervention, describing the efficacy of family group conferences among social welfare recipients on mental health outcomes. Although the intervention group showed significantly better outcomes after 16-23 weeks; no differences were seen at the 1-year follow-up. CONCLUSIONS: Controlled studies of both family-centred interventions and FGDM are still low in quantity and quality. No conclusions on FGDM effectiveness can be drawn. Further high-quality intervention studies are required to evaluate the impact of FGDM on adults in need, including their families; as well as evaluation research detecting possible barriers and facilitators influencing FGDM implementation. PROSPERO REGISTRATION NUMBER: CRD42017077585.

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.

Barriers and facilitators influencing self-management among COPD patients: a mixed methods exploration in primary and affiliated specialist care.

Self-management is becoming increasingly important in COPD health care although it remains difficult to embed self-management into routine clinical care. The implementation of self-management is understood as a complex interaction at the level of patient, health care provider (HCP), and health system. Nonetheless there is still a poor understanding of the barriers and effective facilitators. Comprehension of these determinants can have significant implications in optimizing self-management implementation and give further directions for the development of self-management interventions. Data were collected among COPD patients (N=46) and their HCPs (N=11) in three general practices and their collaborating affiliated hospitals. Mixed methods exploration of the data was conducted and collected by interviews, video-recorded consultations (N=50), and questionnaires on consultation skills. Influencing determinants were monitored by 1) interaction and communication between the patient and HCP, 2) visible and invisible competencies of both the patient and the HCP, and 3) degree of embedding self-management into the health care system. Video observations showed little emphasis on effective behavioral change and follow-up of given lifestyle advice during consultation. A strong presence of COPD assessment and monitoring negatively affects the patient-centered communication. Both patients and HCPs experience difficulties in defining personalized goals. The satisfaction of both patients and HCPs concerning patient centeredness during consultation was measured by the patient feedback questionnaire on consultation skills. The patients scored high (84.3% maximum score) and differed from the HCPs (26.5% maximum score). Although the patient-centered approach accentuating self-management is one of the dominant paradigms in modern medicine, our observations show several influencing determinants causing difficulties in daily practice implementation. This research is a first step unravelling the determinants of self-management leading to a better understanding.