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1.
J Intellect Disabil Res ; 65(1): 1-10, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-33124773

RESUMEN

BACKGROUND: The COVID-19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID-19 pandemic. METHODS: The Sibling Collaborative worked with researchers to codesign an online survey, completed by 91 people, exploring sibling supports and concerns during the COVID-19 pandemic. The survey also aimed to identify helpful resources for siblings during this time. RESULTS: The results showed that the majority of siblings are supporting their brother or sister with IDD during the COVID-19 pandemic and are concerned about the health and well-being of their brother/sister. The most common concern related to disruption of their brother's or sister's routine and activities. Although responses of older and younger siblings did not differ from each other, siblings whose brother or sister with IDD lived with family had some unique concerns relative to those whose siblings no longer lived with family. Siblings described how their own self-care and relationships with others, as well as support for their brother/sister, were particularly helpful during the COVID-19 pandemic. CONCLUSIONS: Siblings are providing key support to their brother or sister with IDD during the COVID-19 pandemic, and they too must be supported. Siblings should be included in efforts to disseminate resources targeting people with IDD and their feedback and input must be obtained. It is also important to include sibling mental wellness as caregiver supports are created and implemented. More research is needed to further understand how to support sibling caregivers.


Asunto(s)
/prevención & control , Cuidadores/psicología , Discapacidades del Desarrollo/psicología , Discapacidad Intelectual/psicología , Relaciones entre Hermanos , Adulto , Anciano , Canadá , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pandemias , Hermanos , Apoyo Social , Encuestas y Cuestionarios/estadística & datos numéricos , Adulto Joven
2.
J Neurol Phys Ther ; 45(1): 14-20, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-33086240

RESUMEN

BACKGROUND AND PURPOSE: Stroke is the leading cause of disability in the United States. Two-thirds of stroke survivors will require caregiver assistance. Evidence suggests the mental health of caregivers is closely related to patients' health outcomes. The timing of this study intersected with the beginning of the coronavirus disease-2019 (COVID-19) pandemic that required strict social distancing and hospital visitor policy changes. This study aims to answer the primary research question: What is the level and nature of stress experienced by caregivers of persons with newly-acquired stroke in the inpatient rehabilitation setting and how has the COVID-19 pandemic impacted the caregiver experience? METHODS: Recruitment occurred from a single inpatient rehabilitation facility. Participants were administered the Perceived Stress Scale and then completed qualitative semistructured interviews. The investigators used a phenomenological, iterative approach to collect and analyze qualitative data. The data were independently coded and categorized before consolidated into primary themes and subthemes. RESULTS: Eleven informal caregivers' perspectives generated 13 subthemes across 4 primary thematic categories: COVID-19 impact, concerns of the caregiver, coping strategies, and important aspects of the caregiver experience. COVID-19 social distancing necessitated new visitor policies, which presented additional challenges for caregivers. DISCUSSION AND CONCLUSIONS: Caregiver attendance at therapy sessions and frequent, direct communication between staff and caregivers improved caregiver readiness for family member discharge following inpatient rehabilitation. This study shared perspectives from a distinctive time during the COVID-19 pandemic. If visitation for multiple therapy sessions is prohibited, we recommend taking alternative measures to keep the caregiver involved in the plan of care.Video Abstract available for more insights from the authors (see the Video, Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A326).


Asunto(s)
Adaptación Psicológica , Cuidadores/psicología , Familia/psicología , Hospitales de Rehabilitación , Estrés Psicológico/psicología , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular/terapia , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Accidente Cerebrovascular/enfermería
3.
Disabil Rehabil ; 43(1): 27-32, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-33167738

RESUMEN

BACKGROUND: The present study investigated the impact of the COVID-19-related rehabilitation services lockdown on the mental health of caregivers of children with neurodevelopmental disabilities. METHODS: Between 26 March and 11 May 2020, 84 caregivers filled out ad-hoc and standardized questionnaires through an online survey in order to measure their psychological response to the emergency and lockdown as well as their levels of parenting stress, anxiety and depression. RESULTS: Worries about COVID-19 contagion and concerns for the child left without rehabilitation programs were the greatest sources of mental health burden for caregivers. Nonetheless, only the concerns for the child were significantly associated with caregivers' reports of stress, depressive and anxious symptoms. DISCUSSION: These findings highlight the burden faced by caregivers of children with neurodevelopmental disabilities during the COVID-19 emergency in Italy. These families should be considered as a high-risk population that requires dedicated healthcare attention, such as promoting continuity of care by investing in tele-rehabilitation programs. Implications for rehabilitation Caregivers of children with disability reported symptoms of anxiety and depression during COVID-19 emergency. Major concerns regarded COVID-19 contagion risk and child development during rehabilitation lockdown. Caregivers' psychological symptoms were associated with concerns for child development during the lockdown. Parents of children with disability may face relevant stress during and after COVID-19 psychological burden. During COVID-19 recovery, policy-makers and clinicians should dedicate specific care actions for families of children with disability.


Asunto(s)
/psicología , Cuidadores/psicología , Salud Mental/estadística & datos numéricos , Trastornos del Neurodesarrollo/psicología , Padres/psicología , Telerrehabilitación/métodos , Adulto , Ansiedad/epidemiología , /prevención & control , Niño , Preescolar , Control de Enfermedades Transmisibles , Prestación de Atención de Salud , Femenino , Necesidades y Demandas de Servicios de Salud , Humanos , Italia , Masculino , Trastornos del Neurodesarrollo/rehabilitación , Pandemias/prevención & control , Aislamiento Social/psicología , Apoyo Social , Estrés Psicológico , Encuestas y Cuestionarios
4.
Support Care Cancer ; 29(1): 239-246, 2021 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-32346797

RESUMEN

PURPOSE: Breast cancer (BC) patients report complex negative emotions, including symptoms of anxiety, depression, and posttraumatic stress disorder (PTSD). What's more, being diagnosed with cancer also has a negative impact on the patient's family such as additional financial burden and care needs, leading to higher levels of caregiver burden. This study aimed to explore whether dispositional mindfulness could alleviate multiple negative emotions of BC patients and to investigate the mediating effect of caregiver burden on the relationship between the patients' dispositional mindfulness and negative emotions. METHODS: A sample of 230 Chinese BC patients receiving chemotherapy and their caregivers voluntarily participated in the study by completing a set of questionnaires including the Mindfulness Attention Awareness Scale, the Caregiver Self-assessment Questionnaires, the General Anxiety Symptoms Scale, the Patient Health Questionnaire, and the PTSD Symptom Scale. Structural equation modeling was used to test the relationship between dispositional mindfulness, negative emotions, and caregiver burden. RESULTS: Dispositional mindfulness was significantly and negatively correlated with negative emotions, including anxiety, depression, and PTSD among the BC patients. Structural equation modeling showed that caregiver burden mediated the relation between patients' dispositional mindfulness and negative emotions. CONCLUSION: BC patients with higher levels of dispositional mindfulness showed less negative emotions. The results of the mediation analysis suggested that higher levels of dispositional mindfulness of breast cancer patients could decrease the caregivers' perceived burden and, in turn, relieve patients' negative emotions. Dispositional mindfulness was beneficial to breast cancer patients as well as their caregivers, indicating that mindfulness-based interventions targeting distress in patient-caregiver dyads would be more effective than what interventions for patients alone.


Asunto(s)
Neoplasias de la Mama/psicología , Cuidadores/psicología , Atención Plena/métodos , Pacientes/psicología , Adulto , Anciano , Ansiedad/psicología , Atención , Neoplasias de la Mama/tratamiento farmacológico , China , Depresión/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Personalidad , Psicometría/métodos , Rol , Trastornos por Estrés Postraumático/psicología , Encuestas y Cuestionarios
5.
Support Care Cancer ; 29(1): 397-407, 2021 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-32372177

RESUMEN

PURPOSE: A caregiver's prognostic awareness can affect clinical decisions for the patient. The purpose of this study was to examine the impact of family caregivers' prognostic awareness on the quality of life (QOL) and emotional state of both patients with advanced cancer and their caregivers. METHODS: This prospective cohort study was conducted from December of 2016 to January of 2018. A total of 159 patients with advanced cancer and an equal number of caregivers participated. The investigation tools used include the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C15-Palliative, the McGill Quality of Life Questionnaire, and the Patient Health Questionnaire-9, and evaluation was performed at baseline, 3 months, and 6 months. Covariance analysis with a general linear modeling was used to compare changes in quality of life scores according to the caregivers' awareness of the prognosis. RESULTS: Mean patient overall QOL score increased in the group of caregivers who were aware of prognosis and decreased in the caregivers who were not aware of the prognosis (p = 0.018). The changes over time in the patients' QOL scores associated with symptoms improved with caregiver awareness (pain, p = 0.017; dyspnea, p = 0.048; appetite loss, p = 0.045). The percentage of depressed patients was smaller after 3 months in the group with caregivers aware of the prognosis (baseline to 3 months p = 0.028). Caregivers who did not understand their patients' prognosis exhibited better existential well-being (p = 0.036), and the incidence of depression was lower in this group at 3 months (p = 0.024). CONCLUSION: Caregivers' prognostic awareness may improve the quality of life and mood in patients with advanced cancer; however, this awareness may harm the quality of life and mood of the caregivers. These results may aid in developing in-depth interventions regarding prognosis for both patients and their caregivers.


Asunto(s)
Cuidadores/psicología , Depresión/epidemiología , Neoplasias/mortalidad , Neoplasias/terapia , Calidad de Vida/psicología , Adulto , Afecto , Anciano , Concienciación , Depresión/psicología , Emociones , Femenino , Humanos , Masculino , Salud Mental , Persona de Mediana Edad , Neoplasias/psicología , Pronóstico , Estudios Prospectivos , Encuestas y Cuestionarios
6.
Am J Geriatr Psychiatry ; 29(1): 27-34, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-33153872

RESUMEN

BACKGROUND: Caregivers of people with dementia (pwD) are at risk of depression, anxiety, and burden. COVID-19 pandemic and government-imposed lockdown as a preventive measure might increase psychological symptoms in caregivers. The authors performed a study to measure the change of psychological symptoms during quarantine or self-isolation for COVID-19 in a sample of Italian caregivers of pwD, and to investigate if the resilience is associated with psychological changes in the sample. METHODS: Eighty-four caregivers of pwD completed an online survey including questionnaires assessing depressive symptomatology and anxiety before and during the lockdown, caregiver burden and levels of resilience. RESULTS: The multivariate analysis of variance revealed an effect of time (before and during the lockdown) in the whole group on depression scores; a significant interaction between time and resilience was found on anxiety scores, revealing that caregivers with high resilience showed a more significant increase of anxiety levels during lockdown than caregivers with low resilience. Moreover, the regression analysis revealed that caregiver burden was associated negatively with resilience scores, and positively with higher functional dependence. CONCLUSION: COVID-19 pandemic and the lockdown produced psychological consequences in caregivers of pwD, with an increase of levels of depression. Moreover, high resilience had a negative effect on anxiety levels and no effect on depressive symptomatology during the lockdown; moreover, it was associated with lower levels of caregiver burden. All caregivers, even those with high resilience levels, should be addressed to psychological interventions to reduce levels of depression, anxiety and caregiver burden.


Asunto(s)
Ansiedad/psicología , Cuidadores/psicología , Costo de Enfermedad , Demencia/enfermería , Depresión/psicología , Cuarentena/psicología , Resiliencia Psicológica , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Italia , Masculino , Persona de Mediana Edad , Factores de Tiempo
7.
Pediatr Blood Cancer ; 68(2): e28790, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33219739

RESUMEN

BACKGROUND: Children with cancer were designated as clinically extremely vulnerable if they were to contract SARS-CoV-2 due to immune suppression in the early phase of the COVID-19 pandemic. Our aim was to explore experiences, information and support needs, and decision making of parents with a child with cancer in response to this phase in the United Kingdom. METHODS: Parents of a child with cancer completed a survey at a time when the UK moved into a period of 'lockdown'. An online survey was developed by the research team to capture parents' experiences, information and support needs, and decision making, using closed statements and open text boxes. Descriptive quantitative analyses and qualitative thematic content analysis were undertaken. FINDINGS: One hundred seventy-one parents/caregivers completed the survey. Eighty-five percent were worried about the virus and they were vigilant about the virus (92%) or cancer symptoms (93.4%). For two-thirds (69.6%), hospital was no longer considered a safe place. Eight overarching themes were identified related to the virus: (a) risk of infection; (b) information, guidance and advice; (c) health care provision; (d) fears and anxieties; or related to lockdown/isolation: (e) psychological and social impact; (f) keeping safe under lockdown; (g) provisions and dependence; and (h) employment and income. CONCLUSIONS: This is the first study, to the best of our knowledge, to report experiences of parents of a child with cancer during the SARS-CoV-2/COVID-19 pandemic. The majority of parents were worried about SARS-CoV-2 and transmitting the virus to their child. Hospital was no longer perceived to be a safe place, and parents were worried about suboptimal cancer care. Parents described fear and anxiety and the psychological, social and economic impact of isolation.


Asunto(s)
/psicología , Cuidadores/psicología , Neoplasias/psicología , Padres/psicología , Adolescente , Adulto , Anciano , Ansiedad/psicología , Niño , Preescolar , Toma de Decisiones , Miedo/psicología , Femenino , Humanos , Lactante , Masculino , Persona de Mediana Edad , Aislamiento de Pacientes/psicología , Sistemas de Apoyo Psicosocial , Reino Unido , Adulto Joven
8.
Pediatr Blood Cancer ; 68(2): e28827, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33251717

RESUMEN

We studied the psychosocial impact of the start of the COVID-19 pandemic on Dutch children with cancer in outpatient care and their caregivers (n = 799) using regular monitoring and screening outcomes. No differences were observed between the pre-COVID-19 and early-COVID-19 periods in health-related quality of life and fatigue of children. Fewer caregivers were distressed during the COVID-19 period than pre-COVID-19. In conclusion, the additional stress of COVID-19 did not deteriorate psychosocial functioning of children with cancer and their caregivers. Results may be explained by alleviating daily life changes, experience in coping with medical traumatic stress, and appropriate care and support.


Asunto(s)
Ansiedad/epidemiología , Cuidadores/psicología , Neoplasias/psicología , Estrés Psicológico/epidemiología , Adaptación Psicológica , Ansiedad/psicología , Niño , Preescolar , Femenino , Humanos , Masculino , Países Bajos , Calidad de Vida/psicología , Estrés Psicológico/psicología , Encuestas y Cuestionarios
9.
J Sch Health ; 91(1): 3-8, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-33140434

RESUMEN

BACKGROUND: Amid the COVID-19 pandemic, there is a need to understand caregiver preferences for their children's instructional format for the start of the 2020 to 2021 academic year. The purpose of the current study was to assess caregiver preferences for on-campus versus virtual learning at home during the fall and factors associated with these preferences. METHODS: Participants were caregivers of 4436 children and adolescents who were enrolled in pre-kindergarten through high school at a large, public school district in Texas. Caregivers were asked to complete an anonymous, online survey about their initial preferences for their student's back to the school learning environment. RESULTS: Caregivers of high- and middle-school students were more likely to endorse a preference for an on-campus/virtual hybrid instructional format and less likely to endorse a preference for a traditional, face-to-face instructional format compared to caregivers of elementary school students. Regardless of the school level, concerns about child health and safety were the factor most strongly associated with caregiver preferences for on-campus versus virtual learning at home during the fall. CONCLUSIONS: These data highlight the importance of school re-opening plans offering virtual options and addressing caregiver concerns about children's health and safety amid the COVID-19 pandemic.


Asunto(s)
/epidemiología , Cuidadores/psicología , Padres/psicología , /organización & administración , Adolescente , Niño , Salud del Niño/normas , Preescolar , Femenino , Humanos , Masculino , Pandemias , Factores Socioeconómicos , Texas/epidemiología
10.
Medicina (Kaunas) ; 56(12)2020 Nov 26.
Artículo en Inglés | MEDLINE | ID: mdl-33255886

RESUMEN

Background and objectives: The COVID-19 pandemic has had an unprecedented reliance on informal caregivers as one of the pillars of healthcare systems. The aim of this study was to assess the quality of life of informal caregivers during the COVID-19 epidemic in Serbia. Materials and Methods: A cross-sectional study was conducted among informal caregivers during the COVID-19 epidemic in Serbia. Physical and mental quality of life was measured by the 36-Item Short-Form Health Survey. Additional data included sociodemographic characteristics, caregiver and care recipient characteristics, and COVID-19 related concerns. The qualitative component was performed using focus groups and individual in-depth interviews. Results: Out of 112 informal caregivers enrolled, most were female (80%), and the average age was 51.1 ± 12.3 years. The majority was delivering care to one person, who was a family member, on a daily basis (86.4%, 92%, and 91.1%, respectively). In multiple regression models, significant predictors of caregivers' physical health were delivering care to a family member and a higher level of care complexity, while significant predictors of caregivers' mental health were a higher level of care complexity and increased concerns about self-health and the health of the person being cared for due to the COVID-19 epidemic. Conclusions: Informal caregivers are experiencing negative physical and mental health outcomes during the COVID-19 epidemic in Serbia.


Asunto(s)
Cuidadores , Disparidades en el Estado de Salud , Salud Mental , Calidad de Vida , /epidemiología , /psicología , /prevención & control , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Serbia/epidemiología
11.
Am J Alzheimers Dis Other Demen ; 35: 1533317520976720, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33295781

RESUMEN

PURPOSE: This study aims to analyze home confinement impact on individuals with neurocognitive disorders (NCD) through informal caregiver's perspective and examine how it has affected caregiving burden. METHODS: Thirty-six caregivers (64.94 ± 13.54 years, 41.7% female) of individuals with NCD (74.28 ± 6.76 years, 66.7% female) selected from the Body & Brain exercise program were interviewed over the phone. The following instruments were used: Barthel Index (BI) to assess care recipients' ability to function independently on activities of daily living (ADL), the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms, and the CarerQol-7D/ CarerQol-VAS to determine caregiver subjective burden/well-being. RESULTS: Pre and post-confinement comparisons showed that care recipients significantly declined their independence in ADL (p = 0.003) and increased NPI total score (MD = 5.72; 95% CI: 1.19 to 10.25, p = 0.015). As for caregivers, results also showed an increased caregiving burden (MD = -0.17; 95% CI: -0.27 to -0.08; p = 0.001) and a decline in their well-being (p = 0.015). DISCUSSION: COVID-19 crisis sheds light on how imperative it is to find solutions and design contingency plans for future crisis, in order to ensure properly sustained support to dementia caregiving dyads and mitigate caregivers' burden.


Asunto(s)
/tratamiento farmacológico , Cuidadores/psicología , Disfunción Cognitiva/psicología , Demencia/psicología , /patogenicidad , Actividades Cotidianas/psicología , Anciano , Anciano de 80 o más Años , Cuidadores/economía , Disfunción Cognitiva/tratamiento farmacológico , Costo de Enfermedad , Femenino , Humanos , Masculino , Persona de Mediana Edad
12.
Front Public Health ; 8: 553345, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33313033

RESUMEN

COVID-19 mitigation measures present unprecedented challenges in mental healthcare delivery, posing high risk to the mental health of at-risk populations, namely patients diagnosed with COVID-19, frontline healthcare providers, and those submitted to quarantine or isolation measures, as well as the general population. Ensuring safe and equitable access to mental healthcare by these groups entails resorting to innovative psychosocial intervention strategies, such as digital mental health. In this perspective piece, we describe the impact of COVID-19 on the Portuguese population's mental health, present an overview on initiatives developed to address the challenges currently faced by the Portuguese mental healthcare system, and discuss how the timely implementation of a comprehensive digital mental health strategy, coupling research, education, implementation, and quality assessment initiatives, might buffer COVID-19's impact on the Portuguese society.


Asunto(s)
/complicaciones , Personal de Salud , Trastornos Mentales , Servicios de Salud Mental , Telemedicina , Cuidadores/psicología , Personal de Salud/psicología , Humanos , Trastornos Mentales/diagnóstico , Trastornos Mentales/terapia , Portugal , Cuarentena
13.
Soins Psychiatr ; 41(331): 39-41, 2020.
Artículo en Francés | MEDLINE | ID: mdl-33357667

RESUMEN

Based on a clinical situation of a patient infected with COVID-19, the caregivers of the Saint-Étienne mobile psychiatric team describe their anxieties. Are the procedures carried out appropriate? Did we respect the safety measures? Are we at risk of contracting the virus and contaminating other people? The scientific discourse of "experts", who used to guide our actions, has throughout this crisis been inadequate and people's beliefs have crumbled. This abandonment is a source of anxiety for everyone, an anxiety about death. However, this reflection should kindle hope, a precious emotion for those working with patients in psychiatry.


Asunto(s)
Ansiedad/psicología , Cuidadores/psicología , Trastornos Mentales/terapia , /epidemiología , Francia/epidemiología , Humanos , Unidades Móviles de Salud , Grupo de Atención al Paciente , Filosofía
14.
PLoS One ; 15(12): e0243702, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33301517

RESUMEN

To clarify the physical and mental conditions of children during the coronavirus disease 2019 pandemic and consequent social distancing in relation to the mental condition of their caregivers. This internet-based nationwide cross-sectional study was conducted between April 30 and May 13, 2020. The participants were 1,200 caregivers of children aged 3-14 years. Child health issues were categorized into "at least one" or "none" according to caregivers' perception. Caregivers' mental status was assessed using the Japanese version of the Kessler Psychological Distress Scale-6. The association between caregivers' mental status and child health issues was analyzed using logistic regression models. Among the participants, 289 (24.1%) had moderate and 352 (29.3%) had severe mental distress and 69.8% of children in their care had health issues. The number of caregivers with mental distress was more than double that reported during the 2016 national survey. After adjusting for covariates, child health issues increased among caregivers with moderate mental distress (odds ratio 2.24, 95% confidence interval 1.59-3.16) and severe mental distress (odds ratio 3.05, 95% confidence interval 2.17-4.29) compared with caregivers with no mental distress. The results highlight parents' psychological stress during the pandemic, suggesting the need for adequate parenting support. However, our study did not consider risk factors of caregivers' mental distress such as socioeconomic background. There is an urgent need for further research to identify vulnerable populations and children's needs to develop sustainable social support programs for those affected by the outbreak.


Asunto(s)
/epidemiología , Cuidadores/psicología , Salud del Niño , Trastornos Mentales/etiología , Estrés Psicológico/etiología , Adolescente , Adulto , Niño , Preescolar , Estudios Transversales , Brotes de Enfermedades , Femenino , Humanos , Japón/epidemiología , Masculino , Trastornos Mentales/psicología , Persona de Mediana Edad , Estrés Psicológico/psicología
15.
Mult Scler Relat Disord ; 46: 102580, 2020 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-33296977

RESUMEN

BACKGROUND: The novel coronavirus of 2019 (COVID-19), a pandemic of the kind not seen for a century, has caused global apprehension and distress. OBJECTIVES: to evaluate whether the psychological state and behaviours of multiple sclerosis (MS) patients and their caregivers were different from the non-MS population or not during the pandemic. METHODS: A cross-sectional survey was conducted on 115 MS patients, 33 MS caregivers and 129 healthy controls. Depression anxiety stress score-21 (DASS-21) was used for evaluation of their psychological state. RESULTS: MS patients had significantly higher DASS-21 scores (51.48±29.62) than their caregivers (29.79±27.19) and non-MS population (32.91±23.39) (p = 0.005). Younger patients (r=-0.252, p<0.0001), those with high EDSS scores (r = 0.023, p = 0.013) and those who believed that MS patients are at high risk for COVID-19 infection (p = 0.009) had the highest anxiety scores. There was no difference between the three groups in the level of commitment to staying at home (p = 0.747), wearing facemask (p = 0.164), wearing gloves (0.225), avoiding crowd (p = 0.225) and frequent hand washing (p = 0.570). Anxious patients had more relapses (p = 0.002) and pseudorelapses (p = 0.008). CONCLUSION: In this cohort, MS patients were more anxious, stressed and depressed during the COVID-19 pandemic than their caregivers and the non-MS population, but they were not more motivated to follow the basic preventive measures against infection.


Asunto(s)
Trastornos de Ansiedad/psicología , Cuidadores/psicología , Esclerosis Múltiple/epidemiología , /patogenicidad , Adulto , Ansiedad/epidemiología , Ansiedad/psicología , Trastornos de Ansiedad/epidemiología , Estudios Transversales , Femenino , Humanos , Masculino , Salud Mental , Persona de Mediana Edad , Esclerosis Múltiple/virología , Estrés Psicológico/epidemiología
16.
Soins Gerontol ; 25(146): 34-37, 2020.
Artículo en Francés | MEDLINE | ID: mdl-33276904

RESUMEN

Following the COVID-19's entry into France, in order to protect the residents, the doors of the accommodation facilities for dependent elderly have been closed and a complete reorganization has been necessary. This confinement and restructuring behind closed doors has many consequences both for the residents and for the staff who accompany them on a daily basis. For the resident, the physical and/or psychological impact will be different depending on his degree of autonomy. The staff fear for their health, their families health, and the one of the elderly they accompany.


Asunto(s)
Cuidadores/psicología , Infecciones por Coronavirus/psicología , Hogares para Ancianos/organización & administración , Casas de Salud/organización & administración , Pandemias/prevención & control , Adulto , Anciano , Anciano de 80 o más Años , Infecciones por Coronavirus/epidemiología , Infecciones por Coronavirus/prevención & control , Miedo , Femenino , Francia , Humanos , Masculino , Persona de Mediana Edad , Estrés Fisiológico
17.
PLoS One ; 15(11): e0241982, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33216771

RESUMEN

INTRODUCTION: Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people's ability to access health services, and navigate the healthcare system. This study's aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. METHOD: We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. FINDINGS: In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. CONCLUSION: This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers' HL may have potential to enhance their ability to provide sustainable care over time.


Asunto(s)
Cuidadores/psicología , Demencia/psicología , Atención al Paciente/psicología , Calidad de Vida/psicología , Actividades Cotidianas/psicología , Adulto , Anciano , Anciano de 80 o más Años , Familia/psicología , Femenino , Alfabetización en Salud , Humanos , Masculino , Persona de Mediana Edad , Noruega , Encuestas y Cuestionarios
18.
Lancet Child Adolesc Health ; 4(12): 889-898, 2020 12.
Artículo en Inglés | MEDLINE | ID: mdl-33217358

RESUMEN

Death of a parent in childhood and adolescence is a distressing life event. Childhood grief reactions are distinct from those in adults, and are affected by developmental and contextual factors such as age of the child and changes in caregiving environments. Following parental bereavement, children and adolescents face unique emotional and behavioural challenges, and are susceptible to several adverse biopsychosocial outcomes. Empirically supported interventions can help young people to navigate the many grief-related challenges, and the core treatment components include grief psychoeducation, building emotion identification and regulation skills, cognitive coping and restructuring, grief and trauma processing, memorialising and continuing bonds, meaning making, involvement of caregivers in grief treatment, and future planning. Health-care professionals often interact with children and adolescents following bereavement; therefore, it is important they have the foundational knowledge and skills to communicate effectively about the death, recognise and normalise different ways grief can manifest across development, and support surviving caregivers in facilitating adaptive grief in their children.


Asunto(s)
Pesar , Muerte Parental/psicología , Adaptación Psicológica , Adolescente , Cuidadores/psicología , Niño , Terapia Cognitivo-Conductual/métodos , Humanos , Psicoterapia de Grupo/métodos , Apoyo Social
19.
PLoS One ; 15(11): e0242233, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33253192

RESUMEN

INTRODUCTION: Alzheimer's disease and related dementias (ADRD) affect over 5.7 million Americans and over 35 million people worldwide. Detection of mild cognitive impairment (MCI) and early ADRD is a challenge to clinicians and researchers. Brief assessment tools frequently emphasize memory impairment, however executive dysfunction may be one of the earliest signs of impairment. To address the need for a brief, easy-to-score, open-access test of executive function for use in clinical practice and research, we created the Number Symbol Coding Task (NSCT). METHODS: This study analyzed 320 consecutive patient-caregiver dyads who underwent a comprehensive evaluation including the Clinical Dementia Rating (CDR), patient and caregiver versions of the Quick Dementia Rating System (QDRS), caregiver ratings of behavior and function, and neuropsychological testing, with a subset undergoing volumetric magnetic resonance imaging (MRI). Estimates of cognitive reserve were calculated using education, combined indices of education and occupation, and verbal IQ. Psychometric properties of the NSCT including data quality, data distribution, floor and ceiling effects, construct and known-groups validity, discriminability, and clinical profiles were determined. RESULTS: The patients had a mean age of 75.3±9.2 years (range 38-98y) with a mean education of 15.7±2.8 years (range 6-26y) of education. The patients had a mean CDR-SB of 4.8±4.7 (range 0-18) and a mean MoCA score of 18.6±7.1 (range 1-30). The mean NSCT score was 30.1±13.8 and followed a normal distribution. All healthy controls and MCI cases were able to complete the NSCT. The NSCT showed moderate-to-strong correlations with clinical and neuropsychological measures with the strongest association (all p's < .001) for measures with executive components (e.g., Judgement and Problem Solving box of the CDR, Decision Making and Problem Solving domain of the QDRS, Trailmaking B, and Cognigram Attention and Executive Composite Scores). Women slightly outperformed men, and individuals with lower educational attainment and lower education-occupation indices had lower NSCT scores. Decreasing NSCT scores corresponded to older age, worse cognitive scores, higher CDR sum of boxes scores, worse caregiver ratings of function and behavior, worse patient and informant QDRS ratings, and smaller hippocampal volumes and hippocampal occupancy scores. The NSCT provided excellent discrimination (AUC: .866; 95% CI: .82-.91) with a cut-off score of 36 providing the best combination of sensitivity (0.880) and specificity (0.759). Combining the NSCT with patient QDRS and caregiver QDRS ratings improved discrimination (AUC: .908; 95% CI: .87-.94). DISCUSSION: The NSCT is a brief, 90-second executive task that incorporates attention, planning and set-switching that can be completed by individuals into the moderate-to-severe stages of dementia. The NSCT may be a useful tool for dementia screening, case-ascertainment in epidemiological or community-based ADRD studies, and in busy primary care settings where time is limited. Combining the NSCT with a brief structured interview tool such as the QDRS may provide excellent power to detect cognitive impairment. The NSCT performed well in comparison to standardized scales of a comprehensive cognitive neurology evaluation across a wide array of sociodemographic variables in a brief fashion that could facilitate its use in clinical care and research.


Asunto(s)
Disfunción Cognitiva/diagnóstico , Demencia/diagnóstico , Función Ejecutiva/fisiología , Psicometría/métodos , Adulto , Anciano , Anciano de 80 o más Años , Área Bajo la Curva , Cuidadores/psicología , Disfunción Cognitiva/patología , Demencia/patología , Femenino , Hipocampo/diagnóstico por imagen , Hipocampo/fisiología , Humanos , Imagen por Resonancia Magnética , Masculino , Persona de Mediana Edad , Curva ROC , Índice de Severidad de la Enfermedad
20.
PLoS One ; 15(11): e0240921, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33147246

RESUMEN

The current study aimed to understand psychosocial and economic impacts of female caregivers and families caring for children with a disability in Belu district, Indonesia. A qualitative inquiry employing one-on-one in-depth interviews was used to collect data from participants (n = 22). Data analysis was guided by a framework analysis for qualitative research. Social implications framework and the economic consequence of disease and injury framework were used to guide the conceptualisation, analysis and discussion of the findings. Findings indicated that female caregivers of children with a disability experienced significant psychosocial challenges. These included feeling frustrated, sad, angry, worried, inferior and insecure due to rejection of their children by other kids with no disability. Poor physical conditions of and negative labelling given to their children and the fear of what the future held for their children with a disability added yet another layer of psychosocial challenges experienced by these women. Separation or divorce and reduced social interaction and engagement in the community were expressed social impact loaded to these women resulting from poor acceptability of the children by their fathers, increased time spent caring and discriminatory and stigmatising attitudes against their children with a disability. The participants also experienced economic impacts, such as increased health and transport expenses, loss of jobs and productivity, and lack of savings. The findings indicate the need for programs and interventions addressing the needs of mothers or female caregivers and families with disabled children. Further studies with large number of participants covering mothers, fathers and caregivers to understand broader experiences and the need of caring for children with a disability are recommended.


Asunto(s)
Cuidadores/psicología , Niños con Discapacidad/rehabilitación , Madres/psicología , Estereotipo , Estrés Psicológico/economía , Adulto , Cuidadores/economía , Niño , Niños con Discapacidad/psicología , Eficiencia , Padre/psicología , Femenino , Humanos , Indonesia , Masculino , Estado Civil , Persona de Mediana Edad , Investigación Cualitativa , Apoyo Social , Estrés Psicológico/psicología , Desempleo/psicología
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