A burden scale is described that is conceptually specific by concentrating on an assessment of different aspects of distress of care-giving burden and conceptually sensitive by distinguishing two dimensions: the relationship of the carer and the care-receiver and the limitations in the personal life of the carer. To develop a burden scale an analysis was carried out on a database of an intervention study in which 89 informal caregivers of psychogeriatric patients were interviewed twice. A principal components analysis was carried out showing two main factors that could be interpreted as the two dimensions mentioned above. Reliability analysis showed a Cronbach's alpha of 0.84 for the total care-giving burden scale (13 items) and 0.77 for both subscales (7 and 6 items), confirmed in an independent sample. An analysis of the hierarchy of items (Mokken Scale Analysis) showed a strong and moderate hierarchy for the subscales and the total scale, respectively. Finally, an analysis of construct validity showed strong correlations of care-giving burden with depression of the carer and deviant behaviour of the patient.
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Abstract: The need for mental healthcare professionals in the Netherlands is increasing caused by the growth of patient complexity. The administration burden causes outflow of professionals and therefor they become increasingly scares. Improvement initiatives are aimed as the intended strategy and starts with (re)-structuring organizations through legislation and regulations. They entail both experienced and measured administration burden for healthcare professionals working in Long-Term Care (LTC). However, most studies only provide insight into the current administration burden or the impact of legislation and regulations on the administration burden from a broad perspective. These insights are useful to LTC managers, but more in-depth research is needed to implement laws and regulations to reduce the administration burden for LTC professionals in the future. The Compulsory Mental Healthcare Act (CMHA) was implemented in the Dutch mental healthcare and replaced the Special Admissions Act in Psychiatric Hospitals (SAAPH) on January 1, 2020. The aim of this study is to investigate the effect of the legislative transition and to determine the effect on the administration burden of Dutch mental healthcare professionals. A survey concerning the administration burden for especially psychiatrists before and after the transition was distributed to an addiction institute with a diversity of different mental healthcare professionals and a psychiatric institute that has been led by psychiatrists. Also some interviews with the lead professionals where held. The results show that the administration burden among psychiatrists has increased due to the contact with external healthcare providers and contact with the patient, family and their loved ones (a consequence of the amendment of the law). This effect was significant and in line with the results of the interviews. Therefor we conclude that the administration burden has increased as a result of the legislative amendment.
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Purpose To empirically define the concept of burden of neck pain. The lack of a clear understanding of this construct from the perspective of persons with neck pain and care providers hampers adequate measurement of this burden. An additional aim was to compare the conceptual model obtained with the frequently used Neck Disability Index (NDI). Methods Concept mapping, combining qualitative (nominal group technique and group consensus) and quantitative research methods (cluster analysis and multidimensional scaling), was applied to groups of persons with neck pain (n = 3) and professionals treating persons with neck pain (n = 2). Group members generated statements, which were organized into concept maps. Group members achieved consensus about the number and description of domains and the researchers then generated an overall mind map covering the full breadth of the burden of neck pain. Results Concept mapping revealed 12 domains of burden of neck pain: impaired mobility neck, neck pain, fatigue/concentration, physical complaints, psychological aspects/consequences, activities of daily living, social participation, financial consequences, difficult to treat/difficult to diagnose, difference of opinion with care providers, incomprehension by social environment, and how person with neck pain deal with complaints. All ten items of the NDI could be linked to the mind map, but the NDI measures only part of the burden of neck pain. Conclusion This study revealed the relevant domains for the burden of neck pain from the viewpoints of persons with neck pain and their care providers. These results can guide the identification of existing measurements instruments for each domain or the development of new ones to measure the burden of neck pain.
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Despite all improvement initiatives such as the national action plan [De-]Regulate Healthcare by the Dutch Ministry of Health, Welfare and Sport in 2018 to create more time for care within the Netherlands, the administrative burden for care workers is still increasing. Managers of healthcare institutes struggle with efficiently implementing government legislations in day-to-day operations. They indicate that the time spent on administrative tasks demanded by municipalities and national authorities is too much. In addition, they also indicate that there is a lack of consistency and uniformity when it comes to the way care workers handle administrative tasks. This way of working causes additional, and often ad hoc, work in the run-up to an audit. It seems that before laws and regulations are effectively implemented, new laws or regulations again demand attention. This looks like a vicious circle, but research to confirm this is not found yet. Therefore, the following research question is formulated: "What is the impact of laws and regulations on the administrative burden with regard to the primary and supportive processes of Dutch long-term care?" An explanatory multiple case study was conducted to answer the research question. Three case studies were carried out during September 2019 to January 2020. Based on these studies, we have concluded that between 29% and 62% of the total perceived administrative burden by long-term care professionals can be related to legislation.
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afstudeerscriptie van studente Psychologie Yasmin Gharavi gepubliceerd in BMC Psychiatry: Background: Family members who care for patients with severe mental illness experience emotional distress and report a higher incidence of mental illness than those in the general population. They report feeling inadequately prepared to provide the necessary practical and emotional support for these patients. The MAT training, an Interaction- Skills Training program (IST) for caregivers, was developed to meet those needs. This study used a single-arm pretestposttest design to examine the impact of the training on caregivers’ sense of competence (self-efficacy) and burden.
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Background: To be accountable to laws and regulations, healthcare professionals spend more than 40% of their time on administrative tasks. The Compulsory Mental Healthcare Act (CMHA) was introduced in Dutch mental healthcare in 2020. It was hypothesized that this legislative amendment would raise the administrative burden for some care professionals. Pilot studies in 2020 and 2021 visualized the exponentially rise of the administrative burden for care professionals, especially psychiatrists due to the transition. However the total response was too small and not generalizable. Aim: gain more nationwide insight in the hypothesized raise of administrative burden of psychiatrists due to the implementation of the CMHA. Method: Under the leadership of an advisory board of three medical director psychiatrists, a Likert scale questionnaire was further developed to investigate the administrative burden of psychiatrists in the Netherlands before and after transition. Open-ended questions provided the opportunity for feedback from the psychiatrists. The study was supported by the Department of Medical Directors (DMD) of The Netherlands Psychiatric Association (NPA). Results: all mental health institutions members of the DMD of the NPA received an invitation to participate. 14 institutions (total N=158) responded. The data show a significant change in the time spent on administrative tasks, the usefulness of the administrative actions, the fit for use and ease of use of supporting systems. The forementioned all decreased significantly after the implementation. Conclusion and discussion: Psychiatrists spend more time on administration than before the legislative amendment instead of helping vulnerable patients. None of the institutions has been able to use the transition to its advantage given the time spent on administrative tasks and the usefulness of these tasks. This is an unacceptable development in the field of mental health in the Netherlands and should be addressed to those who are responsible for the decision making, especially policy makers. These results show that the introduction of the CMHA have made the field of Dutch mental health an impossible area to work for. , Administrative burden, Legislative amendment, Public governance, Information Management
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Abstract: Background: Chronic obstructive pulmonary disease (COPD) and asthma have a high prevalence and disease burden. Blended self-management interventions, which combine eHealth with face-to-face interventions, can help reduce the disease burden. Objective: This systematic review and meta-analysis aims to examine the effectiveness of blended self-management interventions on health-related effectiveness and process outcomes for people with COPD or asthma. Methods: PubMed, Web of Science, COCHRANE Library, Emcare, and Embase were searched in December 2018 and updated in November 2020. Study quality was assessed using the Cochrane risk of bias (ROB) 2 tool and the Grading of Recommendations, Assessment, Development, and Evaluation. Results: A total of 15 COPD and 7 asthma randomized controlled trials were included in this study. The meta-analysis of COPD studies found that the blended intervention showed a small improvement in exercise capacity (standardized mean difference [SMD] 0.48; 95% CI 0.10-0.85) and a significant improvement in the quality of life (QoL; SMD 0.81; 95% CI 0.11-1.51). Blended intervention also reduced the admission rate (relative ratio [RR] 0.61; 95% CI 0.38-0.97). In the COPD systematic review, regarding the exacerbation frequency, both studies found that the intervention reduced exacerbation frequency (RR 0.38; 95% CI 0.26-0.56). A large effect was found on BMI (d=0.81; 95% CI 0.25-1.34); however, the effect was inconclusive because only 1 study was included. Regarding medication adherence, 2 of 3 studies found a moderate effect (d=0.73; 95% CI 0.50-0.96), and 1 study reported a mixed effect. Regarding self-management ability, 1 study reported a large effect (d=1.15; 95% CI 0.66-1.62), and no effect was reported in that study. No effect was found on other process outcomes. The meta-analysis of asthma studies found that blended intervention had a small improvement in lung function (SMD 0.40; 95% CI 0.18-0.62) and QoL (SMD 0.36; 95% CI 0.21-0.50) and a moderate improvement in asthma control (SMD 0.67; 95% CI 0.40-0.93). A large effect was found on BMI (d=1.42; 95% CI 0.28-2.42) and exercise capacity (d=1.50; 95% CI 0.35-2.50); however, 1 study was included per outcome. There was no effect on other outcomes. Furthermore, the majority of the 22 studies showed some concerns about the ROB, and the quality of evidence varied. Conclusions: In patients with COPD, the blended self-management interventions had mixed effects on health-related outcomes, with the strongest evidence found for exercise capacity, QoL, and admission rate. Furthermore, the review suggested that the interventions resulted in small effects on lung function and QoL and a moderate effect on asthma control in patients with asthma. There is some evidence for the effectiveness of blended self-management interventions for patients with COPD and asthma; however, more research is needed. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42019119894; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=119894
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Introduction: Besides dyspnoea and cough, patients with idiopathic pulmonary fibrosis (IPF) or sarcoidosis may experience distressing non-respiratory symptoms, such as fatigue or muscle weakness. However, whether and to what extent symptom burden differs between patients with IPF or sarcoidosis and individuals without respiratory disease remains currently unknown. Objectives: To study the respiratory and non-respiratory burden of multiple symptoms in patients with IPF or sarcoidosis and to compare the symptom burden with individuals without impaired spirometric values, FVC and FEV1 (controls). Methods: Demographics and symptoms were assessed in 59 patients with IPF, 60 patients with sarcoidosis and 118 controls (age ≥18 years). Patients with either condition were matched to controls by sex and age. Severity of 14 symptoms was assessed using a Visual Analogue Scale. Results: 44 patients with IPF (77.3% male; age 70.6±5.5 years) and 44 matched controls, and 45 patients with sarcoidosis (48.9% male; age 58.1±8.6 year) and 45 matched controls were analyzed. Patients with IPF scored higher on 11 symptoms compared to controls (p<0.05), with the largest differences for dyspnoea, cough, fatigue, muscle weakness and insomnia. Patients with sarcoidosis scored higher on all 14 symptoms (p<0.05), with the largest differences for dyspnoea, fatigue, cough, muscle weakness, insomnia, pain, itch, thirst, micturition (night, day). Conclusions: Generally, respiratory and non-respiratory symptom burden is significantly higher in patients with IPF or sarcoidosis compared to controls. This emphasizes the importance of awareness for respiratory and non-respiratory symptom burden in IPF or sarcoidosis and the need for additional research to study the underlying mechanisms and subsequent interventions.
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The need for care will increase in the coming years. Most people with a disability or old age receive support from an informal caregiver. Caring for a person with dementia can be difficult because of the BPSD (Behavioral and Psychological Symptoms of Dementia). BPSD, including sleep disturbance, is an important factor for a higher care load. In this scoping review, we aim to investigate whether technology is available to support the informal caregiver, to lower the care burden, improve sleep quality, and therefore influence the reduction of social isolation of informal caregivers of people with dementia. A scoping review is performed following the methodological framework by Arksey and O'Mally and Rumrill et al., the scoping review includes scientific and other sources (unpublished literature, websites, reports, etc.). The findings of the scoping review shows that there are technology applications available to support the informal caregiver of a person with dementia. The technology applications mostly contribute to lower the care burden and/or improve sleep quality and therefore may contribute to reduce social isolation. The technology applications found target either the person with dementia, the informal caregiver, or both.
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BACKGROUND: Critical illness and the problems faced after ICU discharge do not only affect the patient, it also negatively impacts patients' informal caregivers. There is no review which summarizes all types of burden reported in informal caregivers of ICU survivors. It is important that the burdens these informal caregivers suffer are systematically assessed so the caregivers can receive the professional care they need. We aimed to provide a complete overview of the types of burdens reported in informal caregivers of adult ICU survivors, to make recommendations on which burdens should be assessed in this population, and which tools should be used to assess them.METHOD: We performed a systematic search in PubMed and CINAHL from database inception until June 2014. All articles reporting on burdens in informal caregivers of adult ICU survivors were included. Two independent reviewers used a standardized form to extract characteristics of informal caregivers, types of burdens and instruments used to assess these burdens. The quality of the included studies was assessed using the Newcastle-Ottawa and the PEDro scales.RESULTS: The search yielded 2704 articles, of which we included 28 in our review. The most commonly reported outcomes were psychosocial burden. Six months after ICU discharge, the prevalence of anxiety was between 15% and 24%, depression between 4.7% and 36.4% and post-traumatic stress disorder (PTSD) between 35% and 57.1%. Loss of employment, financial burden, lifestyle interference and low health-related quality of life (HRQoL) were also frequently reported. The most commonly used tools were the Hospital Anxiety and Depression Scale (HADS), Centre for Epidemiological Studies-Depression questionnaire, and Impact of Event Scale (IES). The quality of observational studies was low and of randomized studies moderate to fair.CONCLUSIONS: Informal caregivers of ICU survivors suffer a substantial variety of burdens. Although the quality of the included studies was poor, there is evidence that burden in the psychosocial field is most prevalent. We suggest screening informal caregivers of ICU survivors for anxiety, depression, PTSD, and HRQoL using respectively the HADS, IES and Short Form 36 and recommend a follow-up period of at least 6 months.
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