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1.
Sci Rep ; 14(1): 10688, 2024 05 09.
Article in English | MEDLINE | ID: mdl-38724683

ABSTRACT

Diabetes-related distress (DRD) refers to the psychological distress specific to living with diabetes. DRD can lead to negative clinical consequences such as poor self-management. By knowing the local prevalence and severity of DRD, primary care teams can improve the DRD evaluation in our daily practice. This was a cross-sectional study conducted in 3 General Out-patient Clinics (GOPCs) from 1 December 2021 to 31 May 2022. A random sample of adult Chinese subjects with T2DM, who regularly followed up in the selected clinic in the past 12 months, were included. DRD was measured by the validated 15-item Chinese version of the Diabetes Distress Scale (CDDS-15). An overall mean score ≥ 2.0 was considered clinically significant. The association of DRD with selected clinical and personal factors was investigated. The study recruited 362 subjects (mean age 64.2 years old, S.D. 9.5) with a variable duration of living with T2DM (median duration 7.0 years, IQR 10.0). The response rate was 90.6%. The median HbA1c was 6.9% (IQR 0.9). More than half (59.4%) of the subjects reported a clinically significant DRD. Younger subjects were more likely to have DRD (odds ratio of 0.965, 95% CI 0.937-0.994, p = 0.017). Patients with T2DM in GOPCs commonly experience clinically significant DRD, particularly in the younger age group. The primary care clinicians could consider integrating the evaluation of DRD as a part of comprehensive diabetes care.


Subject(s)
Diabetes Mellitus, Type 2 , Primary Health Care , Humans , Diabetes Mellitus, Type 2/epidemiology , Diabetes Mellitus, Type 2/psychology , Middle Aged , Male , Female , Hong Kong/epidemiology , Prevalence , Cross-Sectional Studies , Aged , Psychological Distress , Stress, Psychological/epidemiology , Risk Factors
2.
Diabet Med ; 41(3): e15219, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37660355

ABSTRACT

AIM: To better understand the prevalence of self-reported psychosocial burdens and the unmet needs identified by people with diabetes in relation to routine diabetes visits. METHODS: An English language, online survey was distributed via social media, key stakeholder networks, charity and advocacy groups to adults with type 1 diabetes or type 2 diabetes. Survey items were designed by members of the FDA RESCUE Collaborative Community Governing Committee prior to pilot testing with potential participants. Descriptive statistical analyses were conducted, as well as thematic analyses on free-text responses using NVivo v14. RESULTS: Four hundred and seventy-eight participants completed the survey: 373 (78%) had type 1 diabetes, 346 (73%) identified as a woman and 433 (91%) were white. Most participants had experienced self-reported (rather than diagnosed) anxiety and depression (n = 323 and n = 313, respectively), as well as fear of low blood sugars (n = 294), low mood (n = 290) and diabetes-related distress (n = 257). Sixty-eight percent reported that diabetes had negatively affected self-esteem, 62% reported the feelings of loneliness, but 93% reported that friends/family/work colleagues were supportive when needed. Two hundred and seventy-two percent (57%) reported that their diabetes team had never raised the topic of mental health. The overwhelming majority stated that the best thing their diabetes team could do to help was to simply ask about mental well-being, listen with empathy and without judgement, and practice skills to understand psychosocial issues in diabetes. CONCLUSION: Integrating psychosocial discussions and support within routine healthcare visits is crucial to improve outcomes for people with diabetes. Such a biopsychosocial model of healthcare has long been advocated by regulatory bodies.


Subject(s)
Diabetes Mellitus, Type 1 , Diabetes Mellitus, Type 2 , Adult , Female , Humans , Diabetes Mellitus, Type 1/epidemiology , Diabetes Mellitus, Type 1/psychology , Diabetes Mellitus, Type 2/epidemiology , Diabetes Mellitus, Type 2/therapy , Emotions , Anxiety/epidemiology
3.
J Neurol ; 271(2): 688-698, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37875677

ABSTRACT

Central neuropathic pain (CNP) and musculoskeletal pain (MSP) are often comorbid with multiple sclerosis (MS), yet data on the emotional burden entailed by this comorbidity are very limited. We studied whether MS patients with CNP exhibited greater emotional burden and pain severity than those with MSP and whether this emotional burden was attributed to the MS, the chronic pain, or both. Participants were 125 MS patients (55 with CNP; 30 with MSP; 40 MS pain-free) and 30 healthy controls (HCs). Participants completed questionnaires assessing pain interference, pain catastrophizing, depression, anxiety, stress, hypervigilance, and chronic pain. Group comparisons and a two-step cluster analysis were performed, and the association between cluster membership and clinical group membership was evaluated. Chronic pain was stronger and more widespread in the CNP group than in the MSP group. Both pain groups had higher pain interference, pain catastrophizing, and stress compared to MS pain-free and HC groups. All MS groups had greater depression levels compared to HCs, and the CNP group had the highest anxiety level. The "high psychological distress" cluster comprised mainly participants with CNP (57%), and the "minimal psychological distress" cluster comprised mainly the MS pain-free and HC groups. In conclusion, CNP seems to induce greater emotional burden and pain severity than does MSP. Whereas depression may be attributed to MS, and anxiety to CNP, enhanced pain interference, catastrophizing, and stress may be attributed to the comorbidity of MS and chronic pain. Identifying these traits among MS patients and targeting them in management programs may contribute to more effective, individually based care.


Subject(s)
Chronic Pain , Multiple Sclerosis , Humans , Chronic Pain/diagnosis , Chronic Pain/epidemiology , Anxiety/epidemiology , Pain Measurement , Catastrophization , Multiple Sclerosis/complications , Multiple Sclerosis/epidemiology
4.
Telemed J E Health ; 30(4): 919-939, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38010739

ABSTRACT

Background: e-Health refers to any health care service delivered through the internet or related technologies, to improve quality of life. Despite the increasing use of e-health interventions to manage type 2 diabetes (T2D), there is a lack of evidence about the effectiveness on diabetes distress and depression, which are common issues in those living with T2D. Purpose: To synthesize and determine the effects of e-health interventions on diabetes distress and depression among patients with T2D. Methods: We systematically searched PubMed, Scopus, Cochrane CENTRAL, and Web of Science for randomized controlled trials (RCTs), non-RCTs and observational cohort studies for the effects of e-health interventions on diabetes distress and depression in patients with T2D up to September 14, 2022. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 recommendations were followed. The risk of bias was assessed according to the Risk-of-Bias 2 tool (RCTs), the Risk Of Bias In Non-randomised Studies-of Interventions (ROBINS-I) (non-RCTs) and the National Institute of Health tool (observational). The standardized mean difference (SMD) and its related 95% confidence intervals (CIs) were estimated with the DerSimonian-Laird method through random-effect models. A pooled raw mean difference (MD) meta-analysis was conducted for RCTs comparing the effects of e-health versus control on diabetes distress screening to display the clinical impact. Results: A total of 41 studies (24 RCTs, 14 non-RCTs, and 3 observational) involving 8,667 individuals were included. The pooled SMD for the effect of e-health versus the control group on diabetes distress was -0.14 (95% CI = -0.24 to -0.04; I2 = 23.9%; n = 10 studies), being -0.06 (95% CI = -0.15 to 0.02; I2 = 7.8%; n = 16 studies) for depression. The pooled raw MD on diabetes distress screening showed a reduction of -0.54 points (95% CI = -0.81 to -0.27; I2 = 85.1%; n = 7 studies). Conclusion: e-Health interventions are effective in diminishing diabetes distress among adults with T2D, inducing clinically meaningful reductions.


Subject(s)
Diabetes Mellitus, Type 2 , Telemedicine , Adult , Humans , Depression/prevention & control , Diabetes Mellitus, Type 2/complications , Diabetes Mellitus, Type 2/therapy , Quality of Life , Patients , Telemedicine/methods
6.
Cureus ; 15(11): e49267, 2023 Nov.
Article in English | MEDLINE | ID: mdl-38143643

ABSTRACT

Rheumatic disease imposes a substantial emotional burden on individuals, leading to chronic pain, discomfort, anxiety, and depression. Coping with unpredictability and physical limitations can create a detrimental feedback loop, exacerbating mental and physical symptoms. Poor mental health can hinder treatment adherence and worsen disease progression. Addressing the emotional impact of rheumatic disease is crucial for comprehensive management. Healthcare providers play a critical role in recognizing psychosocial concerns through attentive listening and standardized screenings. Open communication and a collaborative approach lead to more effective care. Support systems involving family, friends, and support groups provide emotional help and reduce isolation. Coping strategies and self-management techniques empower patients to navigate their conditions. The stigma associated with mental health is a challenge that requires education, awareness, and patient advocacy. A multidisciplinary approach integrating mental health services is pivotal for addressing the psychosocial aspects of rheumatic disease, offering a holistic perspective. Ongoing research explores the interplay between mental health and physical symptoms, aiming for innovative therapies and improved patient care. Collaborative care models and patient advocacy are essential to reducing barriers and improving patient outcomes. The future of rheumatic disease management lies in a patient-centered, multidisciplinary approach that addresses both physical and mental aspects.

7.
Healthcare (Basel) ; 11(18)2023 Sep 08.
Article in English | MEDLINE | ID: mdl-37761698

ABSTRACT

(1) Background: The second victim phenomenon (SVP) plays a critical role in workplace and patient safety. So far, there are limited epidemiological data on the SVP in German-speaking countries. Some studies have been carried out in Germany, but so far, no quantitative studies have been carried out in Austria examining the prevalence, symptom load and preferred support measures for second victims (SVs). This study therefore examines the SVP among Austrian pediatricians. (2) Methods: A nationwide, cross-sectional and anonymous online study was conducted using the SeViD questionnaire (Second Victims in Deutschland) including the Big Five Inventory-10 (BFI-10). Statistical analysis included binary-logistic and multiple linear regression with the bootstrapping, bias-corrected and accelerated (BCa) method based on 1000 bootstrap samples. (3) Results: Of 414 Austrian pediatricians, 89% self-identified as SVs. The main cause of becoming an SV was the unexpected death or suicide of a patient. High neuroticism and extraversion values as well as working in outpatient care positively correlated with having experienced the SVP. A preferred support strategy was access to legal counseling. (4) Conclusions: Austrian pediatricians have the highest SVP prevalence measured with the SeViD questionnaire. Further research should focus on prevention strategies and intervention programs.

8.
Front Psychol ; 14: 1116566, 2023.
Article in English | MEDLINE | ID: mdl-37213392

ABSTRACT

Objectives: We aimed to (1) describe the course of the emotional burden (i.e., depression, anxiety, and stress) in a general population sample during the coronavirus pandemic in 2020 and 2021 and (2) explore the association between emotional burden and a serologically proven infection with SARS-CoV-2. Study design: This longitudinal study involved a sample of community-dwelling persons aged ≥14 years from the general population of South Tyrol (Province of Bolzano-Bozen, Northern Italy). Data were collected at two stages over a 1-year period in 2020 and 2021. Methods: Persons were invited to participate in a survey on socio-demographic, health-related and psychosocial variables (e.g., age, chronic diseases, Depression Anxiety Stress Scale, DASS-21), as well as in the serological testing for of SARS-CoV-2-specific immunoglobulins. Results: In 2020, 855 (23.8%) out of 3,600 persons participated; in 2021, 305 (35.7%) out of 855 were tested again. We observed a statistically significant decrease in mean DASS-21 scores for depression, stress, and total scores between 2020 and 2021, yet not for anxiety. Persons with a confirmed SARS-CoV-2-infection between the first and second data collection exhibited increased emotional burden compared to those without SARS-CoV-2-infection. The odds of participants with a self-reported diagnosis of mental disorder for future infection with SARS-CoV-2 was almost four times higher than that of participants without mental disorders (OR:3.75; 95%CI:1.79-7.83). Conclusion: Our findings support to the hypothesis of a psycho-neuroendocrine-immune interplay in COVID-19. Further research is necessary to explore the mechanisms underlying the interplay between mental health and SARS-CoV-2 infections.

9.
Reprod Biomed Online ; 46(2): 399-409, 2023 02.
Article in English | MEDLINE | ID: mdl-36463078

ABSTRACT

RESEARCH QUESTION: What are the emotional effects of infertility on patients, partners, or both, and how can qualitative thematic analyses and natural language processing (NLP) help evaluate textual data? DESIGN: A cross-sectional, multi-country survey conducted between March 2019 and May 2019. A total of 1944 patients, partners, or both, from nine countries responded to the open-ended question asking about their initial feelings related to an infertility diagnosis. A mixed-method approach that integrated NLP topic modelling and thematic analyses was used to analyse responses. Sentiment polarity was quantified for each response. Linear regression evaluated the association between patient characteristics and sentiment negativity. RESULTS: Common emotional reactions to infertility diagnoses were sadness, depression, stress, disappointment, anxiety, frustration, confusion and loss of self-confidence. NLP topic modelling found additional reactions, i.e. shared feelings with partners, recollections about causes of infertility and treatment experience. Responses to the open-ended question were brief (median: three words) with 71.8% conveying negative sentiments. Some respondent characteristics showed small but significant associations with sentiment negativity, i.e. country (Spain, China and France were more negative than the USA, P < 0.001, P < 0.003 and P < 0.009 respectively), treatment engagement (no treatment was more negative than one or more treatment, P = 0.027) and marital status (missing/other was more negative than divorced, P = 0.003). CONCLUSION: Infertility diagnoses create an emotional burden for patients and partners. The mixed-method approach provides a compelling synergy in support of the validity of these findings and shows potential for these techniques in future research.


Subject(s)
Infertility , Natural Language Processing , Humans , Cross-Sectional Studies , Stress, Psychological/psychology , Infertility/diagnosis , Infertility/therapy , Infertility/psychology , Surveys and Questionnaires
10.
Article in English | MEDLINE | ID: mdl-36360916

ABSTRACT

This quantitative study examines whether employees in the fields of intensive care or acute and emergency medicine experience psychological distress because of their daily work. In addition, it was examined if self-stigmatization tendencies can significantly influence the willingness to seek help, and therefore psychological problems are not being treated adequately. These problems lead to various difficulties in professional and private contexts and ultimately endanger patient safety. From May to June 2021, an online questionnaire survey was conducted. This questionnaire combined two validated measuring instruments (PHQ-D and SSDS). To ensure high participation, the departments of anesthesia and/or intensive care medicine in 68 German hospitals were contacted, of which 5 responded positively. A total of 244 people participated in the questionnaire survey. On average, depressive symptoms were of mild severity. At the same time, self-stigmatization regarding depressive symptoms was high. These results highlight the practical need to prepare staff who work in the field of intensive care or acute and emergency medicine at the early onset for potentially traumatic and emotionally demanding events during their university education or studies. Adequate, evaluated, and continuously available support services from the psychosocial field should become an integral part of every staff care structure.


Subject(s)
Emergency Medicine , Psychological Distress , Humans , Stereotyping , Health Personnel , Critical Care
11.
Article in English | MEDLINE | ID: mdl-35682125

ABSTRACT

BACKGROUND: Nurses and nursing students experienced an emotional burden while working during the COVID-19 outbreak. During the COVID-19 outbreak three questions for nurses working under these extreme circumstances were formulated: 1. What today's events do you remember? 2. How do you feel (physically and mentally)? 3. Do you have enough support? The purpose of this study was to obtain insight into whether nurses and nursing students perceive that the use of the three-questions-method contributes to effective coping with the emotional burden during the COVID-19 outbreak. METHODS: Focus group interviews were held with hospital nurses (n = 11) and nursing students with internships in mental health care (n = 2), hospital (n = 9), and homecare/nursing home care (n = 3) in September 2020 followed by twenty semi-structured interviews one year later. RESULTS: Almost all nurses and nursing students named factors that contributed to the emotional burden: fear, powerlessness, frustration, lack of knowledge about COVID-19, and pressure to pass the internship. Participants indicated that using the three-questions-method can help to effectively cope with the emotional burden during and after the COVID-19 outbreak. CONCLUSIONS: Using the three-questions-method offers added value in coping with emotional burden and can be used in education as well as in practice.


Subject(s)
COVID-19 , Students, Nursing , Adaptation, Psychological , COVID-19/epidemiology , Emotions , Focus Groups , Humans , Students, Nursing/psychology
12.
Curr Oncol ; 29(6): 4235-4244, 2022 06 11.
Article in English | MEDLINE | ID: mdl-35735447

ABSTRACT

Cancer burdens not only the patients themselves but also their personal environment. A few studies have already focused on the mental health and personal needs of caregivers of patients. The purpose of this retrospective analysis was to further assess the emotional burden and unmet needs for support of caregivers in a population of brain metastasis patients. In the time period 2013-2020, we identified 42 informal caregivers of their respective patients after palliative radiation treatment for brain metastases. The caregivers completed two standardized questionnaires about different treatment aspects, their emotional burden, and unmet needs for support. Involvement of psycho-oncology and palliative care was examined in a chart review. The majority of the caregivers (71.4%, n = 30) suffered from high emotional burden during cancer treatment of their relatives and showed unmet needs for emotional and psychosocial support, mostly referring to information needs and the involvement in the patient's treatment decisions. Other unmet needs referred to handling personal needs and fears of dealing with the sick cancer patient in terms of practical care tasks and appropriate communication. Palliative care was involved in 30 cases and psycho-oncology in 12 cases. There is a high need for emotional and psychosocial support in informal caregivers of cancer patients. There might still be room for an improvement of psychosocial and psycho-oncological support. Care planning should cater to the emotional burden and unmet needs of informal caregivers as well. Further prospective studies in larger samples should be performed in order to confirm this analysis.


Subject(s)
Brain Neoplasms , Caregivers , Brain Neoplasms/radiotherapy , Caregivers/psychology , Humans , Palliative Care , Prospective Studies , Retrospective Studies
13.
Diabetes Ther ; 13(3): 517-533, 2022 Mar.
Article in English | MEDLINE | ID: mdl-35199292

ABSTRACT

AIMS: The CRASH study examined severe hypoglycemia (SH) experiences among people with diabetes (PWD) and caregivers across eight countries. Here we report findings from the Japan cohort, with references to data from the United Kingdom (UK) cohort. MATERIALS AND METHODS: Adults with type 1 (T1DM) or insulin-treated type 2 diabetes mellitus (T2DM) and caregivers (not necessarily related) were recruited from online patient panels. Participants who had experienced at least one SH event in the past 3 years were eligible for study inclusion. Participants completed an online survey regarding their experience with SH, its treatment, and actions during and after an event. RESULTS: Of the 9367 PWD and caregivers from the online patient panels, 8475 participants were ineligible and a total of 53 Japanese participants (35 T1DM, 9 T2DM, 9 caregivers) completed the survey. Most SH incidents occurred at home and were unattended by a healthcare provider. For T1DM, 29% of Japan PWD and 13% of the UK PWD called an ambulance during an SH event; of these, 90% (Japan) and 50% (UK) were transported to hospital. Glucagon use was low (3% Japan and 10% UK for T1DM). Japanese respondents reported emotional impacts of SH, including feeling scared (86% T1DM, 56% T2DM), unprepared (63% T1DM, 78% T2DM), and helpless (60% T1DM, 33% T2DM). Despite the emotional burden, most PWD did not immediately discuss their SH event with a healthcare provider, with the majority (75% T1DM, 71% T2DM) waiting until their next doctor's appointment. CONCLUSION: Conversations around SH between healthcare providers and PWD appear to be insufficient in Japan. An emotional burden of SH was reported by PWD and caregivers. Education regarding the prevention of SH and available treatment options may reduce SH events and improve treatment preparation, while alleviating PWD concerns.

14.
Acta Diabetol ; 58(11): 1533-1540, 2021 Nov.
Article in English | MEDLINE | ID: mdl-34132868

ABSTRACT

OBJECTIVE: To investigate the impact of the COVID-19 pandemic on caregivers of youth with type 1 diabetes. METHODS: We performed a qualitative research based on an open-ended questionnaire that was conducted through an online platform for primary caregivers of children and adolescents with type 1 diabetes. Participants were asked to describe the impact of the COVID-19 outbreak on their caring for youth with diabetes, as well as the emotional burden that it has brought to their personal lives. Interview responses were coded and stratified by youth age: ≤ 12 years (youth aged ≤ 12 years) and between 13 and 18 years (youth aged > 12 years). The connections between the responses were identified based on either positive or negative content of the reported experience. Data were analyzed in accordance with an inductive reasoning methodology. RESULTS: A total of 318 participants (mean age of 40.3 ± 8.1 years old) were included, representing caregivers of youth aged 11.7 ± 4.3-year-old with diabetes duration of 5.1 ± 3.8 years. The preponderance of negative feelings was noteworthy. Regarding diabetes care, more than 80% of participants reported concern and anxiety about the changes in habits that accompanied the pandemic. Also, more than half of caregivers regretted the isolation of their youth, factors that were associated with greater difficulty in achieving good glycemic control. Regarding the personal burden experienced, the negative impact of uncertainties and concerns about the COVID-19 were present in almost all participants. CONCLUSION: The period of pandemic may lead to exhaustion in caregivers of youths with type 1 diabetes, which reflects the need for mental health support strategies to help those families.


Subject(s)
COVID-19 , Diabetes Mellitus, Type 1 , Adolescent , Adult , Caregivers , Child , Diabetes Mellitus, Type 1/epidemiology , Humans , Middle Aged , Pandemics , Physical Distancing , Qualitative Research , SARS-CoV-2
15.
Geriatr Nurs ; 42(2): 379-385, 2021.
Article in English | MEDLINE | ID: mdl-33621781

ABSTRACT

The aim of this cross-sectional survey was to characterize the role of and burden on caregivers of heart failure (HF) patients in Japan, since such data are limited at present. Data from 126 caregivers whose average age was 63.5 years were analyzed. Helping to prepare meals/cooking was the most frequently reported activity (47% of caregivers); 24% found this the most burdensome. The most frequently reported physical consequence of caregiving was feeling physically tired (44%); emotionally worrying about the patient (62%) was the most frequent psychological consequence. Approximately half of the caregivers reported that caring for patients impacted their lifestyle. Although 40% of caregivers asked questions to physicians regarding diet or lifestyle modifications, 19% did not ask any. Caregivers play a crucial role in the management of HF patients in Japan but experience physical and emotional burden. Solutions are required to reduce the caregiver burden associated with HF.


Subject(s)
Caregivers , Heart Failure , Cross-Sectional Studies , Humans , Japan , Quality of Life , Surveys and Questionnaires
16.
Int J Nurs Stud ; 115: 103869, 2021 Mar.
Article in English | MEDLINE | ID: mdl-33517081

ABSTRACT

OBJECTIVES: To investigate 1) whether care-related regrets (regret intensity, number of recent regrets) are associated with sick leave, independently of personality traits, perceived safety climate, and physical activity; and 2) whether these associations were mediated or moderated by coping strategies. METHODS: Using a longitudinal international observational study (ICARUS), data were collected by the means of a weekly web survey. Descriptive and generalized estimation equations were performed. RESULTS: A total of 276 newly practicing healthcare professionals (nurses, physicians, others) from 11 countries were included in this study. The average proportion of weeks with at least one day of sick leave was 3.2%. Nurses' sick leave increased with number of care-related regrets (Relative Risk [RR]=1.52; 95% Confidence Interval [CI]=[1.18; 1.95], p=.001), while physicians' sick leave increased with intensity of care-related regret (RR=1.21; 95%CI=[1.00; 1.21], p=.049). Coping was associated with lower risk of sick leave for nurses (RR problem-focused strategies = 0.53; 95%CI=[0.37; 0.74], p=.001, and RRphysical activity=0.68; 95%CI:[0.54; 0.85], p<.001), but not for physicians. Nevertheless, the association of regret with sick leave remained significant even when adjusting for coping. Finally, this study did not find evidence of moderation by the coping strategies. CONCLUSION: Regrets are associated with increased risks of sick leave, even in young healthcare professionals. Use of coping strategies partially mediated these associations in nurses. The results of this study should be used to inform interventions to reduce emotional burdens and enhance protective coping strategies.


Subject(s)
Adaptation, Psychological , Sick Leave , Delivery of Health Care , Emotions , Health Personnel , Humans
17.
Epilepsy Behav ; 112: 107374, 2020 11.
Article in English | MEDLINE | ID: mdl-32882626

ABSTRACT

OBJECTIVE: Status epilepticus (SE) is a life-threatening neurological emergency with the potential for wide-ranging impact on patients and caregivers. In this study, the burden of disease in patients with a history of SE and their caregivers was assessed. METHODS: Adult patients as well as caregivers of children, adolescents, and adults who had experienced ≥1 SE event in the past 24 months completed an online survey. Functional, social, emotional, and economic burden in patients and caregivers was assessed. Burden was measured through concept-targeted questionnaires, including the US Centers for Disease Control and Prevention (CDC) Health-Related Quality of Life 4 (HRQoL-4) and the Work Productivity and Activity Impairment (WPAI) instruments. RESULTS: The 198 respondents comprised 49 adult patients, 51 caregivers of children, 47 caregivers of adolescents, and 51 caregivers of adults. Most patients (93.9%) were diagnosed with epilepsy. Patients' daily activities were highly affected, and many respondents reported a substantial long-term physical and mental impact on patients. The mean CDC HRQoL-4 score for unhealthy days per month ranged from 11.1 for caregivers of adults to 16.9 for caregivers of children. WPAI scores demonstrated a substantial impact on the ability of adult patients and all caregivers to work. Among respondents, caregivers of children reported the highest absenteeism from work (20%) and the lowest employment rate (33%). Proportions of caregivers reporting that their daily social life was impacted at least 'some of the time' ranged from 80% to 92%, with nearly half (47%) of caregivers of children responding that their social life was impacted 'all the time'. CONCLUSIONS: Status epilepticus episodes place a high burden on patients and caregivers. Notably, the burden appeared high across a variety of domains. This study highlights that the burden of disease is pronounced and wide-reaching and goes beyond the immediate physical and medical impact of an SE episode.


Subject(s)
Cost of Illness , Status Epilepticus , Adolescent , Adult , Caregivers , Child , Cross-Sectional Studies , Employment , Humans , Quality of Life , Status Epilepticus/epidemiology , Surveys and Questionnaires
18.
BMC Palliat Care ; 19(1): 77, 2020 Jun 03.
Article in English | MEDLINE | ID: mdl-32493301

ABSTRACT

BACKGROUND: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. METHODS: This transversal study was conducted in a tertiary private teaching hospital, in São Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. RESULTS: A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. CONCLUSIONS: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services.


Subject(s)
Caregivers/psychology , Cost of Illness , Palliative Care/psychology , Spirituality , Adaptation, Psychological , Adult , Aged , Brazil , Female , Humans , Male , Middle Aged , Palliative Care/methods , Palliative Care/trends , Surveys and Questionnaires
19.
Article in English | MEDLINE | ID: mdl-32545445

ABSTRACT

BACKGROUND: The aim of this study was to describe the correlations between the psychosocial burden on male caregivers and their perception of social support, as well as distress, anxiety, and depression among their partners in the first six months after a cancer diagnosis. METHODS: A cross-sectional, longitudinal and observational study was conducted on a group of 61 couples, with the use of Zarit Burden Interview (ZBI), Caregiver Burden Scale (CBS), Berlín Social Support Scales (BSSS), Hospital Anxiety and Depression Scale (HADS) and Distress Thermometer (DT). Statistical analysis was performed using Statistica v.13. RESULTS: A strong positive correlation between the ZBI and CBS, as well as between support-seeking and the emotional involvement of male partners, was documented. The negative correlation between the lack of instrumental support and a much greater burden on caregivers, in emotional, social, and family life was documented. The level of distress, anxiety, and depression, as well as family problems reported by female patients, were positively correlated with the male caregiver's burden. A demographic analysis showed significant relationships between the number of offspring and the negative health indicators of patients and their partners. IMPLICATIONS: The obtained results encourage deeper reflection on the need to improve the availability of instrumental support for male caregivers and support for families with an oncological ill parent in caring for minor children, and to maintain the social activity of the caregiver.


Subject(s)
Caregivers , Emotions , Neoplasms , Social Support , Adult , Berlin , Caregivers/psychology , Child , Cost of Illness , Cross-Sectional Studies , Depression , Female , Humans , Male , Neoplasms/nursing , Quality of Life
20.
J Equine Vet Sci ; 90: 102993, 2020 07.
Article in English | MEDLINE | ID: mdl-32534771

ABSTRACT

This study evaluated the experience of 1,448 people in the United States who currently care for or had previously cared for a geriatric horse and how that experience was qualified by the presence or absence of a chronic condition in the horse. An anonymous, online questionnaire was distributed to a cross-country sample to investigate the burden of caregivers from the perspective of owners of geriatric horses. Traumatic events and veterinary care decisions were also explored. Findings from the study supported the hypothesis that owners of geriatric horses with a chronic condition experienced higher levels of physical and emotional care burden, regardless of the age of the geriatric horse. Attachment levels reported by participants were high, regardless of the health status of the horse. This exploratory study provides the equine practitioner a greater understanding of the care burden experienced by owners of geriatric horses, particularly of owners of geriatric horses with a chronic condition, who rely on their veterinarian to guide their management and health care decisions. Veterinarians can help prepare and support clients as they navigate the complexities of caring for an older horse with a chronic condition.


Subject(s)
Horse Diseases , Veterinarians , Aged , Aging , Animals , Chronic Disease , Horses , Humans , Surveys and Questionnaires , United States
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