Objective To evaluate the effects of a psycho-educational intervention on caregiver burden in partners of patients with postoperative heart failure. Background Since partners of cardiac surgery patients play a significant role in the patient’s recovery, it is important to address their needs during hospitalization and after discharge. Methods Forty-two patients with postoperative heart failure and their partners participated in a randomized controlled pilot study. Dyads in the intervention group received psycho-educational support from a multidisciplinary team. Dyads in the control group received usual care. Results No significant differences were found in the performance of caregiving tasks and perceived caregiver burden in the control versus the intervention group. Conclusion A pilot study exploring the effects of a psycho-educational intervention in patients and their partners did not reveal significant effects with regard to reduced feelings of burden in partners. Alleviating caregiver burden in partners may need a more intense or specific approach.
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Background: Engaging families in postsurgical care is potentially beneficial for improving cancer patient outcomes and quality of care. The authors developed a family involvement program (FIP) and in this study, the authors aim to evaluate the impact of the FIP on family caregiver burden and well-being. Moreover, the authors aim to assess the fidelity of the program. Materials and methods: This is a preplanned subgroup analysis of a patient-preferred prospective cohort study that included family caregivers of patients who underwent major oncological surgery for gastrointestinal tumors. Only patient-nominated family caregivers could participate in the FIP. Caregivers received structured training in fundamental caregiving tasks from healthcare professionals and then actively participated in these tasks. Caregiver burden and well-being were measured four times (at hospital admission, at hospital discharge, and at 1 and 3 months posthospital discharge) using the Caregiver Strain Index+ (CSI+) and the Care-related Quality of Life instrument (CarerQoL-7D). The fidelity of the FIP was assessed by recording completion of care activities. In addition, family caregivers were asked whether they would participate in the FIP again. Results: Most of the 152 family caregivers were female (77.6%), and their mean age was 61.3 years (SD=11.6). Median CSI+ scores ranged between -1 and 0 and remained below the cutoff point of experiencing burden. CarerQoL-7D results indicated no significant differences in family caregivers' well-being over time. Upon discharge, over 75% of the family caregivers stated that they would recommend the FIP to others. The highest compliance with all fundamental care activities was observed during postoperative days 2-4. Conclusion: The family caregivers of oncological surgical patients who participated in the FIP exhibited acceptable levels of caregiver burden and well-being. These findings suggest that the FIP is a valuable intervention to equip family caregivers with the skills to navigate the uncertain period following a patient's hospital discharge.
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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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In Europe, estimates suggest that around 80% of all long-term care is provided by informal caregivers (Zigante, 2018). Caring for a person with dementia can be difficult because of the BPSD (Behavioral and Psychological Symptoms of Dementia) (Chiao, Wu & Hsiao, 2015). Hereby, sleep disturbance is common (Bubu et al., 2017) and an important factor for a higher care burden for the informal caregiver. We performed a project to find out in which way supportive technologies can be implemented in people’s homes.
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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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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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Purpose of review: To summarize the latest research on the risks and consequences of the burden that may be imposed on informal carers of persons living and dying with advanced heart failure.Recent findings: A systematic search in PubMed over the period 2013–2014 ultimately revealed 24 original articles included in this review. From this research update it can be concluded that the body of knowledge increased with more studies focusing on caregivers of patients with advanced heart failure.Summary: Caregivers are important partners in care and their lives are seriously affected by the condition of advanced heart failure. Studies on the longitudinal effects of the caregiving role on caregiver's quality of life and on caregiver contributions to patient outcomes is still scarce. Focus of current research is moving towards relationship aspects. Dyadic-care typologies and the concept of incongruence within dyads in terms of conflicting perspectives on how to manage the heart failure are new and important concepts presented in studies presented in this review. Heart failure patients and their caregivers still lack sufficient palliative care and communication on prognosis and end-of-life care. More research is needed to determine the optimal time to start palliative interventions to support caregivers of patients with advanced heart failure.
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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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In Nederland verleent ongeveer een derde van de volwassen bevolking onbetaalde zorg. Het verlenen van mantelzorg kan in normale tijden zeer belastend zijn, maar de impact van een volksgezondheidscrisis op mantelzorgers is grotendeels onbekend. Deze studie richt zich op de vraag hoe de belasting van mantelzorgers veranderde na de COVID-19 pandemie en welke kenmerken verband hielden met deze veranderingen. We gebruiken zelfgerapporteerde gegevens van een steekproef van 965 mantelzorgers uit Nederland na 3 maanden pandemie om te onderzoeken hoe de objectieve belasting (d.w.z. uren besteed aan mantelzorg) en de subjectieve belasting waren veranderd, en wat hun zorggerelateerde kwaliteit van leven (CarerQol) was. We vonden dat de subjectieve belasting gemiddeld licht was toegenomen (van 4,75 naar 5,04 op een schaal van 0-10). Uit onze analyse bleek echter dat sommige zorgverleners er meer last van hadden dan anderen. De zwaarst getroffen zorgverleners waren vrouwen, met een laag inkomen, een betere lichamelijke gezondheid, een verminderde psychische gezondheid, zorgtaken voor kinderen, een langere duur van de zorg en zorgverleners die zorgden voor iemand met een verminderde lichamelijke en psychische gezondheid. Gemiddeld bleef de tijd die aan zorg werd besteed gelijk (een mediaan van 15 uur per week), maar bepaalde groepen zorgverleners ervoeren wel een verandering, namelijk degenen die zorg verleenden aan mensen in een instelling en aan mensen met een betere psychologische gezondheid vóór de pandemie. Bovendien hadden zorgverleners die veranderingen in objectieve belasting ervoeren niet dezelfde kenmerken als degenen die veranderingen in ervaren belasting en kwaliteit van leven ervoeren. Dit laat zien dat de gevolgen van een volksgezondheidscrisis voor zorgverleners niet kunnen worden gevangen door alleen te kijken naar objectieve of subjectieve belastingsmaten of kwaliteit van leven. Beleid voor langdurige zorg dat erop gericht is zorgverleners te ondersteunen om vol te houden tijdens een toekomstige crisis, moet gericht zijn op zorgverleners met een verhoogd risico op subjectieve belasting en een lagere CarerQol, zoals vrouwen, mensen met een laag inkomen en mensen met zorgtaken. Dergelijk beleid moet er rekening mee houden dat een vermindering van de objectieve belasting niet noodzakelijk leidt tot een vermindering van de subjectieve belasting voor alle zorgverleners.
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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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