Mental Health of Siblings of Children with Rare Congenital Surgical Diseases during the COVID-19 Pandemic

2021 ◽  
Author(s):  
Johannes Boettcher ◽  
Rojin Nazarian ◽  
Mareike Fuerboeter ◽  
Anna Liedtke ◽  
Silke Wiegand-Grefe ◽  
...  
Keyword(s):  
Mental Health ◽  
Rare Diseases ◽  
Health Care Professionals ◽  
Vulnerable Groups ◽  
Behavioral Difficulties ◽  
Healthy Siblings ◽  
Psychosocial Influences ◽  
Strengths And Difficulties ◽  
Families With Children ◽  
Analysis Models

Abstract Introduction The COVID-19 pandemic has affected every aspect of our society, particularly vulnerable groups, such as families with children suffering from rare diseases. However, the psychosocial influences of COVID-19 on the healthy siblings of children with rare diseases have not been investigated yet. Thus, the study aimed to evaluate the mental health of healthy siblings of children with rare congenital surgical diseases during the COVID-19 pandemic. Material and methods Siblings of children with rare congenital surgical diseases were investigated cross-sectionally between April 2020 and April 2021. Data on mental health were collected using the parent-version of the Strengths and Difficulties Questionnaire (SDQ). Results Out of 104 families, 81 (77.88%) participated in the survey. Healthy siblings presented with comparable levels of emotional and behavioral difficulties compared with population norms before the COVID-19 pandemic. Compared with studies that surveyed child and adolescent mental health during the COVID-19 pandemic, parents of siblings in this study reported a significantly lower impairment rate. Psychosocial and disease-specific risk factors of the respective outcomes in healthy siblings were identified through regression analysis models. Conclusion In general, health-care professionals should be aware of the possibility of siblings' mental health being at risk. Therefore, screening for psychosocial deficits may be essential in preventing psychiatric disorders in this population, especially during pandemics. Trial registration ClinicalTrials.gov: NCT04382820 (registered April 8, 2020)

Dual Guidance Structure for Evaluation of Patients with Unclear Diagnosis in Centers for Rare Diseases (ZSE-DUO): Study Protocol for a Controlled Multi-center Cohort Study

2021 ◽  
Author(s):  
Helge Hebestreit ◽  
Cornalia Zeigler ◽  
Christopher Schippers ◽  
Martina de Zwaan ◽  
Jürgen Deckert ◽  
...  
Keyword(s):  
Mental Health ◽  
Mental Disorders ◽  
Rare Disease ◽  
Rare Diseases ◽  
Health Care Professionals ◽  
Standard Care ◽  
Controlled Study ◽  
Diagnostic Process ◽  
Two Phase ◽  
Time To Diagnosis

Abstract Background In individuals suffering from a rare disease the diagnostic process and the confirmation of a final diagnosis often extends over many years. Factors contributing to delayed diagnosis include health care professionals' limited knowledge of rare diseases and frequent (co-)occurrence of mental disorders that may complicate and delay the diagnostic process. The ZSE-DUO study aims to assess the benefits of a combination of a physician focusing on somatic aspects with a mental health expert working side by side as a tandem in the diagnostic process.Study design This multi-center, prospective controlled study has a two-phase cohort design. Methods Two cohorts of 682 patients each are sequentially recruited from 11 university-based German Centers for Rare Diseases (CRD): the standard care cohort (control, somatic expertise only) and the innovative care cohort (experimental, combined somatic and mental health expertise). Individuals aged 12 years and older presenting with symptoms and signs which are not explained by current diagnoses will be included. Data will be collected prior to (T0) and at the first visit (T1) to the CRD’s outpatient clinic and 12 months thereafter (T2). Outcomes Primary outcome is the percentage of patients with one or more confirmed diagnoses covering the symptomatic spectrum presented. Sample size is calculated to detect a 10 percent increase from 30% in standard care to 40% in the innovative dual expert cohort. Secondary outcomes are a) time to diagnosis/diagnoses explaining the symptomatology; b) proportion of patients successfully referred from CRD to standard care; c) costs of diagnosis including incremental cost effectiveness ratios; d) predictive value of screening instruments administered at T0 to identify patients with mental disorders ; e) patients’ quality of life and evaluation of care; and f) physicians’ satisfaction with the innovative care approach. Conclusions This is the first multi-center study to investigate the effects of a mental health specialist working in tandem with a somatic expert physician in CRDs. If this innovative approach proves successful, it will be made available on a larger scale nationally and promoted internationally. In the best case, ZSE-DUO can significantly shorten the time to diagnosis for a suspected rare disease.

scholarly journals Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Mareike Fuerboeter ◽  
Johannes Boettcher ◽  
Claus Barkmann ◽  
Holger Zapf ◽  
Rojin Nazarian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Rare Diseases ◽  
University Hospital ◽  
Vulnerable Groups ◽  
Control Group ◽  
Psychosocial Impairment ◽  
Related Quality ◽  
Surgery Department

Abstract Background COVID-19 has affected our society at large, particularly vulnerable groups, such as children suffering from rare diseases and their parents. However, the psychosocial influences of COVID-19 on these have yet to be investigated. As such, the study’s goal was to evaluate the health-related quality of life (HRQoL), quality of life (QoL), and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic and lockdown measures. Methods A survey of n = 210 parents of children with rare congenital surgical diseases and a control group of n = 88 parents of children without rare diseases was conducted cross-sectionally between April 2020 to April 2021. Data on HRQoL, QoL, and mental health was collected using standardized psychometric questionnaires for children and parents presenting to the pediatric surgery department at a university hospital. Results Mothers of children with rare pediatric surgical diseases showed significantly lower QoL and significantly higher impairment in mental health than a control group and norm data. For fathers, this was solely the case for their QoL. Children’s parent-reported HRQoL and mental health were partially impaired. Social and disease-specific risk factors of the respective outcomes in affected families were identified through regression analysis models. Conclusion Parents of children with rare diseases report severe psychosocial impairment regarding themselves and their children during the COVID-19 pandemic. Therefore, affected families should receive attention and supportive care in the form of a family-center approach to alleviate the additional burden of the COVID-19 pandemic.

A descriptive study of the prevalence of psychological distress and mental disorders in the Canadian population: comparison between low-income and non-low-income populations

2010 ◽  
Vol 30 (3) ◽  
pp. 148-149 ◽  
Author(s):  
J. Caron ◽  
A. Liu
Keyword(s):  
Mental Health ◽  
Substance Abuse ◽  
Psychological Distress ◽  
Mental Disorders ◽  
Low Income ◽  
Well Being ◽  
Descriptive Study ◽  
Canadian Community Health Survey ◽  
Vulnerable Groups ◽  
High Psychological Distress

Objective This descriptive study compares rates of high psychological distress and mental disorders between low-income and non-low-income populations in Canada. Methods Data were collected through the Canadian Community Health Survey – Mental Health and Well-being (CCHS 1.2), which surveyed 36 984 Canadians aged 15 or over; 17.9% (n = 6620) was classified within the low-income population using the Low Income Measure. The K-10 was used to measure psychological distress and the CIDI for assessing mental disorders. Results One out of 5 Canadians reported high psychological distress, and 1 out of 10 reported at least one of the five mental disorders surveyed or substance abuse. Women, single, separated or divorced respondents, non-immigrants and Aboriginal Canadians were more likely to report suffering from psychological distress or from mental disorders and substance abuse. Rates of reported psychological distress and of mental disorders and substance abuse were much higher in low-income populations, and these differences were statistically consistent in most of the sociodemographic strata. Conclusion This study helps determine the vulnerable groups in mental health for which prevention and promotion programs could be designed.

Analysing Dynamic Change in Children’s Socio-Emotional Development using the Strengths and Difficulties Questionnaire in a large UK Longitudinal Study

2020 ◽  
Author(s):  
Lydia Gabriela Speyer ◽  
Anastasia Ushakova ◽  
Hildigunnur Anna Hall ◽  
Michelle Luciano ◽  
Bonnie Auyeung ◽  
...  
Keyword(s):  
Mental Health ◽  
Conduct Problems ◽  
Dynamic Change ◽  
Emotional Problems ◽  
Strengths And Difficulties Questionnaire ◽  
Mental Health Issue ◽  
Childhood And Adolescence ◽  
Peer Problems ◽  
Mental Health Difficulties ◽  
Strengths And Difficulties

Background: Most mental health difficulties have their onset during childhood and adolescence. Many children who suffer from one mental health issue also suffer from at least one comorbid disorder. Autoregressive latent trajectory models with structured residuals (ALT-SR) and multilevel graphical vector autoregression (GVAR) are recent complementary approaches that can help provide new insights into the reciprocal relationships between multiple mental health domains and advance the understanding of the development of comorbidities.Methods: This study uses ALT-SR and multilevel GVAR models to analyse the temporal, contemporaneous and between-person relationships between emotional problems, peer problems, conduct problems, hyperactivity/inattention and prosociality as measured by the parent-reported Strengths and Difficulties Questionnaire (SDQ) in 17,478 children taking part in the UK Millennium Cohort Study at ages 3, 5, 7, 11, 14 and 17 years. Results: Results from both the ALT-SR model and the multilevel GVAR model highlight that children’s strengths and difficulties in different domains of psychosocial functioning dynamically influence each other over- and within-time. The ALT-SR model highlighted that hyperactivity/inattention plays a central role in affecting other domains over developmental time while the GVAR model highlighted comparably strong bidirectional relationships between conduct problems and prosociality as well as between emotional problems and peer problems. Both models suggest that most domains are also related to each other over shorter timescales.Conclusion: This study highlights that mental health difficulties influence one another dynamically over time. As illustrated in the domains of the SDQ, these dynamic changes can be modelled using the complementary techniques of ALT-SR or GVAR models, each offering different insights into the nature of comorbidity.

scholarly journals Typhoon eye effect versus ripple effect: the role of family size on mental health during the COVID-19 pandemic in Pakistan

2021 ◽  
Vol 17 (1) ◽  
Author(s):  
Tooba Lateef ◽  
Jiyao Chen ◽  
Muhammad Tahir ◽  
Teba Abdul Lateef ◽  
Bryan Z. Chen ◽  
...  
Keyword(s):  
Mental Health ◽  
Anxiety Disorders ◽  
Family Size ◽  
Health Care Providers ◽  
Vulnerable Groups ◽  
Ripple Effect ◽  
Health Issues ◽  
Care Providers ◽  
Populous Country

Abstract Background The recent outbreak of COVID-19 has impacted adversely upon the mental health of millions of people worldwide. Impacts on the mental health conditions and the associated predictors relating to adults in Pakistan, the fifth most populous country in the world, during the COVID-19 remain understudied. Our aim was to investigate distress, anxiety, and overall mental health and their associated predictors among Pakistani adults in this pandemic. We specifically examine mental health issues based on the distance from the epicenter, (a predictor that has revealed opposing evidence in other countries) based on the theories of typhoon eye effect and ripple effect. The sample consisted of 601 adults who were surveyed online about 2.5 months into the outbreak across Pakistan with varying distances from the epicenter of COVID-19 of Karachi. Results The results showed that 9.2 and 19.0% of the participants surpassed the cut-off criteria for distress and anxiety disorders, respectively. Overall, the distance from the epicenter positively predicted the mental health of adults in Pakistan, and family size negatively moderated this effect. The distance from the epicenter negatively predicted distress and anxiety disorders for adults in large families, which are quite common in Pakistan. Conclusion The evidence of the study interestingly finds that the prediction of the mental health of people by their distance from the epicenter depends on family size. The evidence of this study can help to provide initial indicators for mental health care providers to screen vulnerable groups in Pakistan, a populous country that continues struggling to cope with the COVID-19 pandemic.

scholarly journals Income-related health inequality among Chinese adults during the COVID-19 pandemic: evidence based on an online survey

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Peng Nie ◽  
Lanlin Ding ◽  
Zhuo Chen ◽  
Shiyong Liu ◽  
Qi Zhang ◽  
...  
Keyword(s):  
Mental Health ◽  
Physical Activity ◽  
Health Outcomes ◽  
Family Member ◽  
Health Inequalities ◽  
Online Survey ◽  
Mainland China ◽  
Decomposition Analysis ◽  
National Sample ◽  
Vulnerable Groups

AbstractBackgroundPartial- or full-lockdowns, among other interventions during the COVID-19 pandemic, may disproportionally affect people (their behaviors and health outcomes) with lower socioeconomic status (SES). This study examines income-related health inequalities and their main contributors in China during the pandemic.MethodsThe 2020 China COVID-19 Survey is an anonymous 74-item survey administered via social media in China. A national sample of 10,545 adults in all 31 provinces, municipalities, and autonomous regions in mainland China provided comprehensive data on sociodemographic characteristics, awareness and attitudes towards COVID-19, lifestyle factors, and health outcomes during the lockdown. Of them, 8448 subjects provided data for this analysis. Concentration Index (CI) and Corrected CI (CCI) were used to measure income-related inequalities in mental health and self-reported health (SRH), respectively. Wagstaff-type decomposition analysis was used to identify contributors to health inequalities.ResultsMost participants reported their health status as “very good” (39.0%) or “excellent” (42.3%). CCI of SRH and mental health were − 0.09 (p < 0.01) and 0.04 (p < 0.01), respectively, indicating pro-poor inequality in ill SRH and pro-rich inequality in ill mental health. Income was the leading contributor to inequalities in SRH and mental health, accounting for 62.7% (p < 0.01) and 39.0% (p < 0.05) of income-related inequalities, respectively. The COVID-19 related variables, including self-reported family-member COVID-19 infection, job loss, experiences of food and medication shortage, engagement in physical activity, and five different-level pandemic regions of residence, explained substantial inequalities in ill SRH and ill mental health, accounting for 29.7% (p < 0.01) and 20.6% (p < 0.01), respectively. Self-reported family member COVID-19 infection, experiencing food and medication shortage, and engagement in physical activity explain 9.4% (p < 0.01), 2.6% (the summed contributions of experiencing food shortage (0.9%) and medication shortage (1.7%),p < 0.01), and 17.6% (p < 0.01) inequality in SRH, respectively (8.9% (p < 0.01), 24.1% (p < 0.01), and 15.1% (p < 0.01) for mental health).ConclusionsPer capita household income last year, experiences of food and medication shortage, self-reported family member COVID-19 infection, and physical activity are important contributors to health inequalities, especially mental health in China during the COVID-19 pandemic. Intervention programs should be implemented to support vulnerable groups.

scholarly journals OP0082-PARE THE EFFECT COVID-19 HAS ON THE MENTAL HEALTH OF PEOPLE LIVING WITH RHEUMATIC DISEASES. FROM DATA TO INTERVENTIONS.

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 44-45
Author(s):  
S. Mingolla ◽  
A. Celano ◽  
M. Santopietro
Keyword(s):  
Mental Health ◽  
Rheumatic Diseases ◽  
Rare Diseases ◽  
Psychological Impact ◽  
Well Being ◽  
Total Sample ◽  
Support Service ◽  
Health Condition ◽  
National Association ◽  
The Impact

Background:Covid-19 has had an important impact on the mental health conditions of over 5 million Italians suffering from one of the over 150 rheumatic diseases. In order to understand the psychological impact of the Covid-19 emergency and the restrictions imposed to counter it, the Italian National Association of People with Rheumatic and Rare Diseases – APMARR APS launched the research “Living with a rheumatic pathology”.Objectives:Gather data directly from Italian patients about the impact of the COVID-19 and consequent restrictions on their mental health and feelings; evaluate the most effective intervention to be implemented to face the pandemic by Patients organization.Methods:A qualitative-quantitative survey was carried out through a questionnaire administered throughout the national territory to a sample of N = 1,001 people. The people invited to complete the questionnaire were women (55,9%) and men (44,1%), aged 18-85 years (age 18-41=26,7%; age 42-65=64%; age >65=9,3%) with at least one rheumatic pathology. The questionnaire was made up of 39 questions, of which 29 were closed and 10 were open. For the administration of the questionnaires, the CAWI (Computer Aided Web Interview) methodology of on-line survey was used. The 1,001 interviews were carried out from 7 to 14 August 2020.Results:More than 4 out of 10 people (total sample 44.2%; male 60%, female 35,7%; age 18-41=39,1%; age 42-65=45,9%; age >65 = 50%) declared that the emergency period has somehow caused a worsening of their health condition. People declared that the deterioration of their health is due to the emergency period for the following reasons: 1) Psychological: such as stress and anxiety: “Too much stress and anxiety made the symptoms worse.”; “The stress of the quarantine affected my problem”; “Insomnia. Nervousness. General ailments. Depression. Strong stress” 2) Inability to perform physiotherapy and motor activities due to the lockdown 3) Postponement of examinations, visits and checks 4) remote working, in some cases described as harmful for people’s mental and physical health: “Due to Covid19 I had to do remote working and I worked even 12 hours a day including holidays to the detriment of my family life”.Furthermore, from January 31, 2020 a significant increase emerged in communication problems with rheumatology specialist compared to the period before the emergency due to Covid-19. The sharp increase may be due to the situation of severe psychological stress to which also the doctors were subjected in the emergency phase: people could not find the comfort of being empathically listened to.Conclusion:The research shows that the most frequent symptoms among people with rheumatic diseases were depression and high levels of anxiety due to strong emotional stress. Psychological malaise caused direct effects in worsening the symptoms of rheumatic disease as well as other related effects, for example, insomnia. The forced isolation due to the lockdown has made people lack the social support that is fundamental for the psychological well-being especially for those suffering from some chronic pathology. Starting from the data collected, APMARR promptly activated a completely free psychological support service with 6 professional psychologists, two of them specialized in emergency psychology. The service is accessible online and is still going on for all who are not able to overcome the anxiety and fear related to the pandemic and its evolution. Thousands of accesses to the service have been measured to date.References:S Mingolla1, A Celano1, M Santopietro2[1]NATIONAL ASSOCIATION OF PEOPLE WITH RHEUMATIC AND RARE DISEASES - APMARR APS[2]WeResearch. Ricerche di marketingDisclosure of Interests:None declared

Disaster Management in Rural and Remote Primary Health Care: A Scoping Review

2021 ◽  
Vol 36 (3) ◽  
pp. 362-369
Author(s):  
Katie A. Willson ◽  
Gerard J. FitzGerald ◽  
David Lim
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Primary Health Care ◽  
Mental Health Care ◽  
Disaster Management ◽  
Scoping Review ◽  
Health Care Professionals ◽  
Disaster Preparedness ◽  
Rural And Remote ◽  
Primary Health

AbstractObjective:This scoping review aims to map the roles of rural and remote primary health care professionals (PHCPs) during disasters.Introduction:Disasters can have catastrophic impacts on society and are broadly classified into natural events, man-made incidents, or a mixture of both. The PHCPs working in rural and remote communities face additional challenges when dealing with disasters and have significant roles during the Prevention, Preparedness, Response, and Recovery (PPRR) stages of disaster management.Methods:A Johanna Briggs Institute (JBI) scoping review methodology was utilized, and the search was conducted over seven electronic databases according to a priori protocol.Results:Forty-one papers were included and sixty-one roles were identified across the four stages of disaster management. The majority of disasters described within the literature were natural events and pandemics. Before a disaster occurs, PHCPs can build individual resilience through education. As recognized and respected leaders within their community, PHCPs are invaluable in assisting with disaster preparedness through being involved in organizations’ planning policies and contributing to natural disaster and pandemic surveillance. Key roles during the response stage include accommodating patient surge, triage, maintaining the health of the remaining population, instituting infection control, and ensuring a team-based approach to mental health care during the disaster. In the aftermath and recovery stage, rural and remote PHCPs provide long-term follow up, assisting patients in accessing post-disaster support including delivery of mental health care.Conclusion:Rural and remote PHCPs play significant roles within their community throughout the continuum of disaster management. As a consequence of their flexible scope of practice, PHCPs are well-placed to be involved during all stages of disaster, from building of community resilience and contributing to early alert of pandemics, to participating in the direct response when a disaster occurs and leading the way to recovery.

The ‘loneliness pandemic’: implications for gerontological nursing

2021 ◽  
Vol 30 (11) ◽  
pp. 652-655
Author(s):  
Carlos Laranjeira
Keyword(s):  
Mental Health ◽  
Older Adults ◽  
Older People ◽  
Chronic Diseases ◽  
Old Age ◽  
Social Isolation ◽  
Social Relationships ◽  
Vulnerable Groups ◽  
Negative Consequences ◽  
Gerontological Nursing

The COVID-19 pandemic compelled states to limit free movement, in order to protect at-risk and more vulnerable groups, particularly older adults. Due to old age or debilitating chronic diseases, this group is also more vulnerable to loneliness (perceived discrepancy between actual and desired social relationships) and social isolation (feeling that one does not belong to society). This forced isolation has negative consequences for the health of older people, particularly their mental health. This is an especially challenging time for gerontological nursing, but it is also an opportunity for professionals to combat age stereotypes reinforced with COVID-19, to urge the measurement of loneliness and social isolation, and to rethink how to further adjust interventions in times of crisis, such as considering technology-mediated interventions in these uncertain times.

scholarly journals ‘We’re Meant to Be Crossing Over … but the Bridge Is broken’: 2020 University Graduates’ Experiences of the Pandemic in Ireland

Young ◽  
2021 ◽  
pp. 110330882110047
Author(s):  
Virpi Timonen ◽  
Jo Greene ◽  
Ayeshah Émon
Keyword(s):  
Mental Health ◽  
Labour Market ◽  
Vulnerable Groups ◽  
Crossing Over ◽  
University Graduates ◽  
Market Uncertainty ◽  
Postgraduate Study ◽  
Positive Experiences ◽  
Care Practices

We interviewed university graduates of 2020 in Ireland to understand how the coronavirus pandemic had affected them. Demonstrating a keen awareness of their mental health, participants had adopted self-care practices such as mindfulness. They recounted positive experiences of life in their ‘lockdown homes’ with supportive families. Some were embarking on normative adult pathways sooner than anticipated while others opted for postgraduate study to bide time. Participants reported heightened worry/anxiety and had limited their media use in response. Their plans did not extend beyond the immediate future, reflecting a degree of resignation. The participants accepted the strict constraints associated with pandemic management in Ireland. They did not view themselves as members of a group that was likely to experience the long-term costs of the pandemic but rather were attempting to negotiate their own pathway through labour market uncertainty while also demonstrating high levels of solidarity towards vulnerable groups in society.

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