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1.
Health Qual Life Outcomes ; 19(1): 172, 2021 Jun 30.
Artigo em Inglês | MEDLINE | ID: mdl-34193154

RESUMO

BACKGROUND: Neurodegenerative diseases (NDs) are one of the main causes of disability and dependence that have a great impact both on the quality of life of people with disabilities and their families. A majority of people with NDs receive care and support from the family, but there is no tool in Spain with which to measure whole-family QOL. The aim of this study was the translation, cultural adaptation, and validation of the FQOLS-Dementia into Spanish to assess FQOL among family members of individuals with NDs who live in the Spain-Portugal cross-border area. METHOD: The Spanish version was translated and adapted following the international guidelines for cross-cultural adaptation tests. A sample of 300 family caregivers was interviewed, applying an adapted version of the Family Quality Survey (FQOLS-Dementia). Confirmatory factor analysis was performed to validate the factor structure, and convergent validity was examined with Pearson's correlation coefficients of the global FQOL with the domains. Internal consistency reliability was determined using Cronbach's alpha. RESULTS: The domain structure of the FQOLS-ND showed a good fit. In the convergent validity, it was found that the total score and the subscale domain scores were associated with the global FQOL score, except for the Values domain. Internal consistency of nine domain subscales was strong (α = 0.80 to 0.91), and excellent for the total FQOL (α = 0.85) and the global FQOL (α = 0.87). CONCLUSION: The FQOLS-ND presented good validity and reliability in caregiver families with individuals with ND, so its application shows its usefulness in detecting areas of improvement and intervention strategies for FQOL in the Spain-Portugal cross-border area.


Assuntos
Cuidadores/psicologia , Família/psicologia , Doenças Neurodegenerativas/terapia , Qualidade de Vida , Inquéritos e Questionários/normas , Adulto , Análise Fatorial , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria/instrumentação , Reprodutibilidade dos Testes , Espanha , Traduções
2.
Afr J Prim Health Care Fam Med ; 13(1): e1-e8, 2021 Jun 15.
Artigo em Inglês | MEDLINE | ID: mdl-34212738

RESUMO

BACKGROUND: The responsibility of caring for patients with advanced cancer in sub-Saharan Africa is mostly shouldered by family members because of paucity of institutional facilities. There is a growing concern that the number of women needing treatment for advanced breast cancer is rising at an unprecedented rate in Nigeria. AIM: To assess the caregiver burden and its associated factors amongst family caregivers of women with advanced breast cancer. SETTING: The study was conducted at the radiation oncology clinic of the University College Hospital, Ibadan, Nigeria. METHODS: A cross-sectional descriptive study was conducted amongst 157 eligible family caregivers of women with advanced breast cancer. The family caregivers completed an interviewer-administered questionnaire, which included the socio-demographic data, the caregiving process and the Zarit Burden Interview (ZBI). Logistic regression was used to identify factors, and ethical approval was obtained. RESULTS: Over half (53%) of the respondents were males with spousal caregivers dominantly constituting 27.4% of all respondents, closely followed by daughters (25.5%) of the care recipients. The mean ZBI score was 29.84 ± 13.9. Most (72%) of the caregivers experienced burden. Factors associated with caregiver burden were previous hospitalisation of the care recipient (odds ratio [OR] = 3.74, confidence interval [CI]: 1.67 to 8.38) and perceived dysfunction in patients activities of daily living (OR = 2.57, CI: 1.14 to 5.78). CONCLUSION: Family caregivers of women with advanced breast cancer experience burden of care. Recognition of this vulnerable population and the care recipient as a dyad is a sine qua non in mitigating the burden associated with their caregiving role.


Assuntos
Neoplasias da Mama/radioterapia , Fardo do Cuidador , Cuidadores/psicologia , Radioterapia (Especialidade) , Atividades Cotidianas , Adulto , Idoso , Neoplasias da Mama/patologia , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Nigéria , Escalas de Graduação Psiquiátrica , Índice de Gravidade de Doença
3.
BMC Fam Pract ; 22(1): 137, 2021 06 29.
Artigo em Inglês | MEDLINE | ID: mdl-34187368

RESUMO

BACKGROUND: Family caregivers of patients with COVID-19 face many challenges that affect their physical and mental health. AIM: The aim of the present study was to explore experiences of family caregivers of patients with COVID-19. METHODS: This phenomenological study was performed based on 13 family caregivers who had experience in home caring for patients with COVID-19. Data were collected through purposive sampling with in-depth semi-structured interviews. The Colaizzi's 7-step method was used to determine themes. The MAXQDA10 software was used to manage qualitative data analysis. RESULTS: Thirteen family caregivers participated. Five main themes describe family caregivers' experiences of caring for patients with COVID-19: nature of the disease; unmet needs; unpleasant physical, psychological, and social experiences; care facilitators and positive experiences. CONCLUSION: Information and financial support for COVID-19 should be provided to family caregivers. Also, community members should embrace patients and family caregivers and reinforce the positive experiences of caregivers.


Assuntos
COVID-19/terapia , Cuidadores/psicologia , Família/psicologia , Adaptação Psicológica , Adulto , COVID-19/complicações , COVID-19/psicologia , Emoções , Feminino , Humanos , Irã (Geográfico) , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Comportamento Social , Apoio Social , Adulto Jovem
4.
MMWR Morb Mortal Wkly Rep ; 70(24): 879-887, 2021 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-34138835

RESUMO

Early during the COVID-19 pandemic, nearly two thirds of unpaid caregivers of adults reported adverse mental or behavioral health symptoms, compared with approximately one third of noncaregivers† (1). In addition, 27% of parents of children aged <18 years reported that their mental health had worsened during the pandemic (2). To examine mental health during the COVID-19 pandemic among U.S. adults on the basis of their classification as having a parenting role (i.e., unpaid persons caring for children and adolescents aged <18 years, referred to as children in this report) or being an unpaid caregiver of adults (i.e., persons caring for adults aged ≥18 years),§ CDC analyzed data from cross-sectional surveys that were administered during December 2020 and February-March 2021 for The COVID-19 Outbreak Public Evaluation (COPE) Initiative.¶ Respondents were categorized as parents only, caregivers of adults only, parents-caregivers (persons in both roles), or nonparents/noncaregivers (persons in neither role). Adjusted odds ratios (aORs) for any adverse mental health symptoms, particularly suicidal ideation, were higher among all respondents who were parents, caregivers of adults, or both compared with respondents who were nonparents/noncaregivers and were highest among persons in both roles (parents-caregivers) (any adverse mental health symptoms: aOR = 5.1, 95% confidence interval [CI] = 4.1-6.2; serious suicidal ideation: aOR = 8.2, 95% CI = 6.5-10.4). These findings highlight that parents and caregivers, especially those balancing roles both as parents and caregivers, experienced higher levels of adverse mental health symptoms during the COVID-19 pandemic than adults without these responsibilities. Caregivers who had someone to rely on for support had lower odds of experiencing any adverse mental health symptoms. Additional measures are needed to improve mental health among parents, caregivers, and parents-caregivers.


Assuntos
COVID-19/psicologia , Cuidadores/psicologia , Transtornos Mentais/epidemiologia , Pais/psicologia , Adolescente , Adulto , Idoso , COVID-19/epidemiologia , Cuidadores/economia , Cuidadores/estatística & dados numéricos , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Estados Unidos/epidemiologia , Adulto Jovem
5.
Health Psychol ; 40(5): 295-304, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-34152783

RESUMO

OBJECTIVE: To examine effects of stress on caregiver psychological adjustment during the first year of pediatric cancer. METHOD: Caregivers (N = 159) of children with cancer completed monthly questionnaires assessing domains of caregiver psychological adjustment (depression, anxiety, and posttraumatic stress symptoms) and stress (general life stress, treatment-related stress, caregiver perceptions of treatment intensity and life threat). Effects of stress were assessed at two levels to examine whether within-person changes in stress predicted concurrent changes in caregiver adjustment and whether average stress was associated with between-person differences in caregiver adjustment trajectories. RESULTS: Overall, higher levels of stress factors were associated with poorer caregiver adjustment at both the between- and within-person levels, with high average levels of treatment-related stress and general life stress emerging as leading predictors of worse adjustment. CONCLUSIONS: Both types of stressors, those directly related as well as unrelated to a child's cancer, contribute uniquely to caregiver distress. Caregiver distress is impacted by both overall levels of stress over time as well as month-to-month changes in stress. Implications for informing care for at-risk caregivers are discussed. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Assuntos
Cuidadores/psicologia , Ajustamento Emocional , Neoplasias/psicologia , Pais/psicologia , Estresse Psicológico/psicologia , Adolescente , Adulto , Cuidadores/estatística & dados numéricos , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Neoplasias/terapia , Inquéritos e Questionários
6.
Health Qual Life Outcomes ; 19(1): 170, 2021 Jun 24.
Artigo em Inglês | MEDLINE | ID: mdl-34167529

RESUMO

BACKGROUND: Day care service (DCS) provides various activities in a professional environment to meet the old people with functional limitations. However, relatively little is known about the effects of DCS on physical and mental functions. METHODS: This was a retrospective study that we used a comprehensive geriatric assessment to evaluate the changes before and after DCS among participants in a hospital-affiliated geriatric day care center in Taiwan. The burden of the participants' families was also assessed. RESULTS: The 18 participants with a median age of 80.9 (interquartile range (IQR) 75.2-86.6 y/o) were enrolled and followed up for 6 months. Based on the clinical dementia rating (CDR), disease stage was very mild in 3 participants, mild in 10, moderate in 3, and severe in 2. The activities of daily living (ADL) scores of the participants improved significantly from 75 (IQR 60.0-80.0) at baseline to 77.5 (IQR 65.0-90.0) at the 6 month (p < 0.001), and mini-mental state examination (MMSE) scores from 15 (IQR 11.5-20.0) to 18 (IQR 15.8-24.0) (p = 0.026). There was a positive correlation of baseline mini-nutritional assessment-short form score and the 3-level version of the European Quality of Life-5 dimensions utility index with both ADL and MMSE scores at the 6-month follow-up. In addition, the family burden scale was reduced from 22 to 15 (p = 0.002). CONCLUSIONS: The physical and cognitive functions in old people with dementia who received DCS were maintained or partially improved, and their families' stress burden was alleviated.


Assuntos
Atividades Cotidianas , Cognição , Hospital Dia/psicologia , Demência/psicologia , Estado Funcional , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Feminino , Avaliação Geriátrica , Humanos , Masculino , Testes de Estado Mental e Demência , Avaliação Nutricional , Qualidade de Vida , Estudos Retrospectivos , Taiwan
7.
Health Qual Life Outcomes ; 19(1): 171, 2021 Jun 26.
Artigo em Inglês | MEDLINE | ID: mdl-34174889

RESUMO

BACKGROUND: Idiopathic central precocious puberty (ICPP) reduces patient health-related quality of life (HRQoL). The impacts of disease and treatment on families are also an important concern. This study aimed to assess the association between family impact and HRQoL of children with ICPP. METHODS: We conducted a case-control study in Chongqing, China. A case group of 134 children with ICPP aged 5-12 years and their caregivers was recruited from a children's hospital in Chongqing. A total of 210 gender- and age-matched subjects from two primary schools were selected as controls. PedsQLTM4.0 Generic Core Scales (GCS) and PedsQL™ Family Impact Module (FIM) were used in this study. RESULTS: Children with ICPP scored lower than controls in all HRQoL domains except physical functioning. In particular, the two groups were significantly different in emotional functioning scores (d = 0.414, P < 0.001). Compared with controls, ICPP families had lower scores in all dimensions of the FIM scale (d = 0.288-1.030, all P < 0.05). Factors associated with HRQoL of ICPP patients included: age of patients, type of medical treatment, employment status of caregivers, educational level of caregivers, parent HRQoL and family functioning (all P < 0.05). CONCLUSIONS: Children with ICPP demonstrated lower quality of life and greater family impact compared to healthy controls. In addition, less impact of disease on parent HRQoL and family functioning was associated with better HRQoL of ICPP patients, patients aged older, treated with drug combination, cared by employed or well-educated caregivers reported better HRQoL. Health care professionals should pay more attention to younger patients treated with GnRHa alone, and provide targeted interventions for caregivers depending on their demographic background to reduce family impact and thereby improve patient HRQoL.


Assuntos
Cuidadores/psicologia , Puberdade Precoce/psicologia , Qualidade de Vida , Estudos de Casos e Controles , Criança , Pré-Escolar , China , Humanos , Masculino , Pais/psicologia , Puberdade Precoce/tratamento farmacológico
8.
J Pediatr Orthop ; 41(6): e392-e397, 2021 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-34096547

RESUMO

BACKGROUND: Diagnosis and treatment for developmental dysplasia of the hip (DDH) varies greatly depending on condition severity, age at diagnosis, and professional opinion. Little is known about patient experiences across the globe. We aimed to characterize global patient and caregiver experiences during DDH care and to highlight patient-identified priorities. METHODS: We developed a cross-sectional survey in collaboration with 7 DDH outreach organizations. DDH patients and/or their caregivers (above 18 y old) were invited to complete an international online survey about their experiences. Participants were recruited through web media of all collaborating organizations. Data collection took place over 3 months. Descriptive statistics were used to analyze quantitative results. Qualitative content analysis was used to categorize open-ended responses. RESULTS: A total of 739 participants completed the survey, representing 638 (86.3%) parents/guardians of DDH patients, and 101 (13.7%) patients. Three hundred eighty-six (52.2%) participants received diagnosis by 3 months of age; mean age of diagnosis was 15.96 months (90% confidence interval=12.04, 19.91). Of 211 participants with family history of DDH, 68 (32.3%) did not receive DDH screening. Of 187 patients born breech, 82 (43.9%) did not receive DDH screening. In total, 36/94 (38.3%) participants with both family history and breech birth did not receive DDH screening. Most participants reported treatment (696/730, 95.3%), including bracing (n=461) surgery (n=364), and/or closed reduction (n=141). A total of 144 patients reported >1 surgery; 82 reported >3 surgeries. Participants reported a range of 1 to 400 visits to health care professionals for DDH care across 1 to 66 years. Lack of information and resources on treatment practicalities and timelines, along with emotional burden of diagnosis, were greatest challenges reported. CONCLUSION: Results demonstrate that DDH diagnosis and treatment can pose significant burden on patients and caregivers. Reliable public information is needed to support those affected. Global educational efforts are needed to raise awareness of DDH risk factors, signs, and symptoms among care providers, to increase awareness and improve identification, screening, and monitoring of at-risk children.


Assuntos
Cuidadores/psicologia , Displasia do Desenvolvimento do Quadril/terapia , Adolescente , Adulto , Cuidadores/estatística & dados numéricos , Criança , Pré-Escolar , Estudos Transversais , Luxação Congênita de Quadril , Humanos , Lactente , Recém-Nascido , Masculino , Programas de Rastreamento/estatística & dados numéricos , Pessoa de Meia-Idade , Fatores de Risco , Inquéritos e Questionários , Adulto Jovem
9.
Palliat Med ; 35(7): 1258-1266, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-34006157

RESUMO

BACKGROUND: COVID-19 has impacted persons with serious illness, including those with chronic, neurodegenerative conditions. While there are several reports on COVID-19's impact on inpatient palliative care, literature is limited about the impact on outpatient care which may be more relevant for these patients. AIM: To generate a person-centered description of the impact of COVID-19 from the perspectives of patients living with neurodegenerative disease and caregivers to improve outpatient palliative care delivery. DESIGN: This qualitative study used rapid analysis via matrix design to identify emergent themes related to participant perspectives on the challenges of COVID-19. Data sources included semi-structured interviews, open-ended survey responses, medical record documentation and participant-researcher communications. SETTING/PARTICIPANTS: Data was collected from 108 patients with Parkinson's disease, Alzheimer's disease or related disorders and 90 caregivers enrolled in a multicenter, clinical trial of community-based, outpatient palliative care between March 20, 2020 and August 8, 2020 (NCT03076671). RESULTS: Four main themes emerged: (1) disruptions to delivery of healthcare and other supportive services; (2) increased symptomatic and psychosocial needs; (3) increased caregiver burden; (4) limitations of telecommunications when compared to in-person contact. We observed that these themes interacted and intersected. CONCLUSIONS: Patients and caregivers have unmet care needs because of the pandemic, exacerbated by social isolation. While telemedicine has helped improve access to healthcare, patients and caregivers perceive clear limitations compared to in-person services. Changes in society and healthcare delivery in response to COVID-19 highlight ongoing and novel gaps that must be addressed to optimize future outpatient palliative care for neurologic illness.


Assuntos
COVID-19 , Cuidadores/psicologia , Doenças Neurodegenerativas , Cuidados Paliativos , Assistência Ambulatorial , Humanos , Doenças Neurodegenerativas/terapia , Pacientes Ambulatoriais , Pandemias , SARS-CoV-2
10.
Res Dev Disabil ; 114: 103983, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33964709

RESUMO

The COVID-19 pandemic has created unique challenges for family caregivers of children with developmental disabilities (DD). The purpose of this study was to conduct a 6-month follow-up on the experiences of caregiver burden and psychological distress among caregivers of children with autism (ASD) and/or attention deficit hyperactivity disorder (ADHD) during COVID-19 pandemic, compare their experiences to caregivers of children without DD, and test the interaction between opportunities for self-care and caregiver burden and psychological distress. Results indicated caregivers of children with ASD/ADHD continued to report significantly higher levels of psychological distress and caregiver burden compared to caregivers of children without DD. Counter to study hypotheses decreased opportunities to engage in self-care as a result of the pandemic predicted higher levels of psychological distress and caregiver burden for caregivers of children without DD, whereas only caregiver burden was moderated by self-care for caregivers of children with ASD/ADHD. Overall, the COVID-19 pandemic is continuing to negatively impact the psychological health of family caregivers of school-age children. In general, greater challenges are presented for caregivers of children with ASD/ADHD, but they seem to be more resilient to some COVID-19 challenges than caregivers of children without DD.


Assuntos
COVID-19 , Cuidadores/psicologia , Deficiências do Desenvolvimento , Angústia Psicológica , Transtorno do Deficit de Atenção com Hiperatividade , Transtorno Autístico , Criança , Humanos , Pandemias
11.
Transl Behav Med ; 11(5): 1187-1197, 2021 05 25.
Artigo em Inglês | MEDLINE | ID: mdl-34042962

RESUMO

The COVID-19 pandemic likely exacerbated caregiving challenges for caregivers of parents diagnosed with a blood cancer. Providing care during a public health crisis presents a complex web of uncertainties regarding cancer care, personal health, and COVID-19 risk. Identifying caregivers' uncertainty experiences during the COVID-19 pandemic can be a first step in learning where to direct resources or alter policies to ensure that they can not only perform their caregiver role but also cope in health-promoting ways. Using uncertainty management theory, this study explored how the pandemic has impacted adult child caregivers' experiences caring for a parent diagnosed with a blood cancer, as well as their experiences of uncertainty and uncertainty management. As part of a larger study on blood cancer caregivers' needs, a survey was administered from March 30 to June 1, 2020, to recruit caregivers through the Leukemia and Lymphoma Society. A qualitative and quantitative content analysis was conducted on open-ended responses from 84 caregivers. Caregivers described changes illustrating the complexity of providing care during a pandemic: (a) increased fears and uncertainty-related distress, b) reduced in-person care opportunities, (c) increased isolation, and (d) enhanced family communication. Caregivers with parents diagnosed with acute blood cancers used significantly more uncertainty management strategies and had more sources of uncertainty than caregivers with parents living with chronic blood cancer types. Findings highlight the need for supportive services to help caregivers manage uncertainty and improve their capacity to provide care in an unpredictable global health crisis. Such support may reduce poor psychosocial outcomes.


Assuntos
COVID-19 , Cuidadores/psicologia , Neoplasias Hematológicas/terapia , Adaptação Psicológica , Adulto , Humanos , Determinação de Necessidades de Cuidados de Saúde , Pandemias , Inquéritos e Questionários , Incerteza
12.
Geriatr Gerontol Int ; 21(7): 561-567, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33949065

RESUMO

AIM: The aim of this study was to examine the ability of a group-based multi-component psycho-educational intervention (GMC-PEI) to reduce depression, and improve caregiving appraisals, coping skills of informal caregivers and the condition of people with dementia. METHODS: In this randomized controlled and blinded trial, we enrolled 54 informal caregivers of people with dementia visiting the Japan National Center of Geriatrics and Gerontology, and divided them into GMC-PEI and control groups. The intervention group received a 12-week GMC-PEI program that included six 2-h structured sessions to enhance their knowledge of dementia, caregiving skills and coping skills. The control group received leaflets containing information about dementia. We evaluated caregivers' depression, caregiving time, subjective burden, caregiving appraisal and care coping skills. We also evaluated people with dementia at baseline and 12 weeks, and reassessed 20 participants from the intervention group at 24 and 48 weeks. RESULTS: The GMC-PEI significantly improved depression, positive appraisals of fulfillment in caregiving, affection for care recipients, self-growth and coping skills, such as seeking formal support. Depression, fulfillment and affection for people with dementia showed a peak improvement at 24 weeks; formal support-seeking showed a linear improvement throughout the 48-week follow-up period. CONCLUSIONS: The group-based multi-component psycho-educational intervention reduced depression, improved self-appraisal and enhanced coping skills in caregivers. However, emotional enhancements dissipated sooner than support-seeking skills, suggesting that caregivers should be reviewed every 12-24 weeks. Geriatr Gerontol Int 2021; 21: 561-567.


Assuntos
Adaptação Psicológica , Cuidadores/educação , Demência , Qualidade de Vida/psicologia , Adulto , Idoso , Cuidadores/psicologia , Demência/enfermagem , Depressão/psicologia , Feminino , Educação em Saúde , Humanos , Japão , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde
13.
Health Policy ; 125(7): 859-868, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33994215

RESUMO

This study analyzes the impacts of COVID-19 on two elements: long-term care at home, which is available for care recipients who live in their own home, and working status in Japan. A regression analysis of municipality data reveals that the number of users of adult daycare is negatively correlated to COVID-19, both nationally and regionally. This finding is intuitive because people avoid daycare due to the increased risk of exposure to infection. However, the number of users of home care is positively correlated to users of daycare, which implies that home care has not functioned as a replacement for daycare, despite government encouragement. Furthermore, a regression analysis using prefecture data shows that working hours for both females and males were negatively correlated to the national status of the pandemic, while the regional status of the pandemic was negatively correlated only to female working hours. This implies that female labor status is more vulnerable to such outbreaks in Japan. Also, we find consistent results with a situation in which informal care compensated for the decline in daycare use; and this care has been provided primarily by especially females who have reduced their working hours by COVID-19.


Assuntos
COVID-19/psicologia , Cuidadores/psicologia , Serviços de Assistência Domiciliar/estatística & dados numéricos , Assistência de Longa Duração , Adulto , COVID-19/epidemiologia , Feminino , Humanos , Japão , Masculino , Pandemias , SARS-CoV-2
14.
Rev Bras Enferm ; 74(suppl 2): e20200412, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34037192

RESUMO

OBJECTIVE: to compare cognitive performance of elderly caregivers with and without chronic pain over four years and verify the effect of pain intensity on cognitive performance of elderly caregivers with chronic pain. METHOD: a longitudinal study with data collected in 2014 and 2018. Community-dwelling elderly caregivers of a Brazilian city participated in the study. Cognition was assessed using the Addenbrooke's Cognitive Examination instrument. Pain was assessed by an 11-point scale. For data analysis, a mixed linear model and ANCOVA with a 5% significance level were used. RESULTS: they were divided into two groups. A cognitive decline over four years was found in elderly people with pain (p=0.02; 95%CI=0.32-4.25), while those without pain did not show a significant change. CONCLUSION: the results show that elderly caregivers with pain had a worse cognitive performance, but when comparing groups with the ANCOVA test for intergroup analysis, there was no difference in cognitive performance.


Assuntos
Cuidadores/psicologia , Dor Crônica/complicações , Cognição , Disfunção Cognitiva/epidemiologia , Idoso , Idoso de 80 Anos ou mais , Brasil/epidemiologia , Dor Crônica/psicologia , Disfunção Cognitiva/etiologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Saúde Pública
15.
Integr Cancer Ther ; 20: 15347354211019111, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34036820

RESUMO

BACKGROUND: The acceptability of videoconferencing delivery of yoga interventions in the advanced cancer setting is relatively unexplored. The current report summarizes the challenges and solutions of the transition from an in-person (ie, face-to-face) to a videoconference intervention delivery approach in response to the Coronavirus Disease pandemic. METHOD: Participants included patient-family caregiver dyads who were enrolled in ongoing yoga trials and 2 certified yoga therapists who delivered the yoga sessions. We summarized their experiences using recordings of the yoga sessions and interventionists' progress notes. RESULTS: Out of 7 dyads participating in the parent trial, 1 declined the videoconferenced sessions. Participants were between the ages of 55 and 76 and mostly non-Hispanic White (83%). Patients were mainly male (83%), all had stage III or IV cancer and were undergoing radiotherapy. Caregivers were all female. Despite challenges in the areas of technology, location, and setting, instruction and personal connection, the overall acceptability was high among patients, caregivers, and instructors. Through this transition process, solutions to these challenges were found, which are described here. CONCLUSION: Although in-person interventions are favored by both the study participants and the interventionists, videoconference sessions were deemed acceptable. All participants had the benefit of a previous in-person experience, which was helpful and perhaps necessary for older and advanced cancer patients requiring practice modifications. In a remote setting, the assistance of caregivers seems particularly beneficial to ensure practice safety. CLINICALTRIALS.GOV: NCT03948100; NCT02481349.


Assuntos
COVID-19/epidemiologia , Cuidadores , Neoplasias/terapia , Comunicação por Videoconferência , Ioga , Adulto , Idoso , Atitude do Pessoal de Saúde , COVID-19/psicologia , Cuidadores/psicologia , Estudos de Viabilidade , Feminino , Humanos , Masculino , Meditação/métodos , Meditação/psicologia , Pessoa de Meia-Idade , Neoplasias/psicologia , Pandemias , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Percepção , Telemedicina/métodos , Telemedicina/organização & administração , Resultado do Tratamento , Ioga/psicologia
16.
Nurs Adm Q ; 45(3): 243-252, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33935211

RESUMO

The Greater Boston Nursing Collective, a consortium composed of university nursing deans and chief nursing officers within academic medical centers and specialty hospitals in Boston, Massachusetts, was formed in 2014. Since the group's inception, our mission has been to create and reinforce whole-person/whole-system healing environments to improve the health of all communities. Through our collaboration in navigating the dual epidemics of COVID-19 and structural racism within our respective organizations, and across the United States and the world, we share experiences and lessons learned. Our common mission is clearer than ever: to create safe and joyful work environments, to protect the dignity of those we are privileged to serve, and to generate policies to advance health equity to rectify societal forces that have shaped this dual epidemic. We are humbled by the many who persist despite limited rest and respite, and whose stories, innovations, and leadership we are honored to witness and share. They have defined our generation, just as nurses in earlier crises have done: leading through service to others as our purpose and privilege.


Assuntos
Liderança , Enfermeiras Administradoras/psicologia , Pandemias , Boston , Cuidadores/psicologia , Cuidadores/tendências , Humanos , Enfermeiras Administradoras/tendências , Estados Unidos , Local de Trabalho/psicologia , Local de Trabalho/normas
17.
Ann Hematol ; 100(7): 1803-1813, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33938996

RESUMO

The transition to oral therapies in patients with multiple myeloma (MM) offers potential benefits to patients; however, they must self-manage their medication and adherence plays an important role in patient care. It has been shown that patient satisfaction with their medication has a strong positive correlation with adherence in chronic diseases. The aim of this study was to estimate adherence rate of oral antimyeloma therapies and to identify risk factors for medication non-adherence. This observational, prospective, and multicentre survey based on a self-report questionnaire enrolled MM patients with at least 3 months of oral therapy. The 6-item Girerd scale and the medication possession ratio (MPR) were used for measuring medication adherence and the SATMED-Q® questionnaire was used for measuring satisfaction. An analysis of risk factors for non-adherence to oral therapy was performed using univariate analysis. A total of 101 patients participated in the survey, yielding a response rate of 87%. The prevalence of adherence to oral antimyeloma therapy was estimated at 51.5% using the Girerd questionnaire. According to the MPR, adherence was evaluated at 96% (i.e. MPR ≥ 0.80). Both methods combined, adherence was estimated at 50.5%. One risk factor for medication non-adherence was identified: Eastern Cooperative Oncology Group Performance Status > 2 (p = 0.007). One predictive factor for high medication adherence was identified: high satisfaction with treatment (p = 0.01). Identifying patients at higher risk for non-adherence allows clinical pharmacists to personalise therapeutic information and education and to improve the quality of healthcare overall.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/administração & dosagem , Adesão à Medicação/psicologia , Mieloma Múltiplo/psicologia , Satisfação do Paciente , Administração Oral , Idoso , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Cuidadores/psicologia , Estudos Transversais , Feminino , França/epidemiologia , Hospitais Gerais/estatística & dados numéricos , Hospitais Universitários/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Mieloma Múltiplo/tratamento farmacológico , Satisfação Pessoal , Estudos Prospectivos , Fatores Socioeconômicos , Inquéritos e Questionários , Centros de Atenção Terciária/estatística & dados numéricos
18.
J Consult Clin Psychol ; 89(4): 341-349, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34014695

RESUMO

INTRODUCTION: Long-term outcomes are of particular importance in evaluating interventions for family caregivers of people with dementia (PwD). So far, evidence for long-term effects (>6 months postintervention) is limited to four interventions. OBJECTIVE: We examined the long-term effects of Tele.TAnDem, a telephone-based cognitive-behavioral therapy (CBT) intervention, on a variety of outcomes at 3-year follow-up, the longest follow-up of any intervention study for caregivers of PwD (without continuous support). METHODS: Caregivers of PwD were randomly assigned to receive Tele.TAnDem consisting of 12 sessions over 6 months (intervention group [IG]) or usual care (control group [CG]). At 3-year follow-up (i.e., 2.5 years postintervention), 29 caregivers in the IG and 22 caregivers in the CG were still caring at home for a PwD. RESULTS: Caregivers in the IG reported significantly lower caregiver burden and higher quality of life regarding social relationships. CONCLUSIONS: Tele.TAnDem is successful in buffering detrimental effects of caregiving on caregiver burden and social relationships in the long term. The small- to medium-sized effects lie in the range of effect sizes reported in the few previous investigations. The findings add to the scant evidence that interventions yielding long-term outcomes have to date mostly been multicomponent interventions based on CBT principles with structured techniques and at least seven sessions over more than 2 months. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Assuntos
Cuidadores/psicologia , Terapia Cognitivo-Comportamental/métodos , Demência/enfermagem , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida
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