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1.
Rev. SPAGESP ; 22(2): 89-103, jul.-dez. 2021. ilus
Artículo en Portugués | LILACS, Index Psicología - Revistas | ID: biblio-1340815

RESUMEN

RESUMO O estudo analisou as perspectivas das famílias usuárias do Benefício de Prestação Continuada (BPC) acerca do Acompanhamento Familiar realizado por psicólogos em uma cidade do interior de Minas Gerais. Participaram oito familiares de pessoas com transtornos mentais que recebiam o BPC e que faziam acompanhamento nos oito CRAS da cidade. Empregou-se um roteiro de entrevista semiestruturada e os dados foram submetidos à análise de conteúdo de Bardin. Os resultados demonstraram que os familiares desconheciam tanto o serviço de Acompanhamento Familiar quanto seus Direitos Sociais e, consequentemente, não desenvolviam a Autonomia. Constatou-se que, embora os psicólogos não desenvolvessem atendimentos clínicos, evidenciou-se a necessidade de que psicólogos realizem atendimentos em contextos terapêuticos para acolhimento das demandas emocionais desses familiares.


ABSTRACT This research analyzed the perspective of families benefiting from the Continued Payment Benefit (BPC) about the family care assistance service performed by psychologists in a city in the interior of Minas Gerais. Participants were eight families of individuals diagnosed with mental disorders that received BPC and were inserted into eight CRAS unities. The instrument used was a semistructured interview script. Data were submitted to content analysis in thematic modality from Bardin. Results showed that family members were unaware of both family care assistance service and their Social Rights. Consequently, they had not developed autonomy. Moreover, although the psychologists did not perform clinical care, the need for them to develop therapeutic assistance to embrace the emotional demands of family members was evident.


El Estudio analizó perspectivas de familias que utilizan Beneficio Pago Continuo (BPC) sobre Apoyo Familiar realizado por psicólogos en una ciudad del interior de Minas Gerais. Participaron ocho familiares de personas con trastornos mentales que recibieron el BPC y fueron seguidos de ocho CRAS de la ciudad. Se utilizó un guión de entrevista semiestructurado y los datos se sometieron a análisis de contenido en modalidad temática de Bardin. Los resultados mostraron que los familiares desconocían tanto el servicio de Apoyo Familiar como sus Derechos Sociales, en consecuencia, no desarrollaron autonomía. Se encontró que, si bien los psicólogos no brindaron atención clínica, se evidenció la necesidad de que los psicólogos brinden atención en contextos terapéuticos para cuidar de las demandas emocionales de estos familiares.


Asunto(s)
Humanos , Servicio Social , Cuidadores , Continuidad de la Atención al Paciente , Enfermos Mentales , Chaperones Médicos , Servicios de Salud Mental
2.
Multimedia | Recursos Multimedia | ID: multimedia-9393

RESUMEN

Ana Luisa conta sobre o processo de criação de uma síntese de Evidência sobre a melhora de atenção a saúde oferecido por cuidadores para crianças com transtorno de neurodesenvolvimento.


Asunto(s)
Práctica Clínica Basada en la Evidencia , Trastornos del Neurodesarrollo , Política de Salud , Cuidadores
3.
J Contemp Dent Pract ; 22(8): 894-899, 2021 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-34753841

RESUMEN

AIM AND OBJECTIVE: The aim of the study was to evaluate the satisfaction of an oral health promotion program among parents and caregivers of children with special healthcare needs (CSHCN) in Riyadh, Saudi Arabia. MATERIALS AND METHODS: A digital survey using Google forms was used during an event to commemorate the World Disability Day. Stalls for oral health education and training were set up at Disabled Children Society, Riyadh, Saudi Arabia. Oral health education was carried out using written pamphlets, brochures, and videos. Live demonstration on dental models was used for tooth-brushing training using a powered toothbrush. Parents and caregivers were asked to complete a survey about oral health education during the event. An overall 189 parents and caregivers of CSHCN including 62 males and 127 females completed the survey. The responses were entered digitally prior to being evaluated. RESULTS: The respondents were parents and/or caregivers of children mostly having cerebral palsy followed by autism. Females consisted of 67% of the respondents. Eight-one percent of respondents rated it as highly satisfied. Ninety-one percent of the respondents perceived that the information provided was new for them regarding oral healthcare for CSHCN. Ninety-eight percent of respondents were likely to attend a similar event in the future. CONCLUSION: Majority of parents and caregivers of CSHCN were highly satisfied by the oral health education during the event. They felt that they can take better care of the oral health of their CSHCN after the oral health education and training. CLINICAL SIGNIFICANCE: Oral health among CSHCN is neglected when compared to children among the general population. CSHCN exhibit many barriers to oral health care. Oral health promotion among CSHCN is important as they have a high unmet oral health need.


Asunto(s)
Cuidadores , Niños con Discapacidad , Niño , Femenino , Educación en Salud Dental , Accesibilidad a los Servicios de Salud , Necesidades y Demandas de Servicios de Salud , Humanos , Masculino , Padres , Satisfacción Personal , Arabia Saudita , Estados Unidos
4.
Stud Health Technol Inform ; 286: 38-42, 2021 Nov 08.
Artículo en Inglés | MEDLINE | ID: mdl-34755687

RESUMEN

OBJECTIVE: To report underlying factors that hinder or advance mHealth implementation and use in Dutch dementia care. METHODS: 44 dementia experts (healthcare professionals, informal caregivers, dementia case managers, and researchers) completed a questionnaire as part of a wider Delphi study to share their experiences with, thoughts on, and proposals for mHealth use in Dutch dementia care. A SWOT-framework is used to categorize the experiences, thoughts and proposals. RESULTS: Four strengths, twelve weaknesses, thirteen opportunities and six threats for the current use of mHealth in Dutch dementia care were identified. CONCLUSION: Identified weaknesses highlight the importance for a guide for action for everyone involved in design and implementing mHealth for older adults with dementia. It is critical to raise awareness of mHealth's availability, improve its design, and continue to address the needs of older adults with dementia.


Asunto(s)
Demencia , Telemedicina , Anciano , Cuidadores , Demencia/terapia , Personal de Salud , Humanos , Encuestas y Cuestionarios
5.
BMC Neurol ; 21(1): 429, 2021 Nov 05.
Artículo en Inglés | MEDLINE | ID: mdl-34740323

RESUMEN

AIM: Exploration of the healthcare journey post-stroke is incomplete without acknowledging the crucial role of family caregivers. With limited literature documenting the role of caregivers in the healthcare journey post-stroke, we aimed to describe the healthcare experiences of family caregivers and stroke survivors across different caregiver identities in Singapore. METHODS: We conducted a qualitative descriptive study involving semi-structured interviews with transcripts analysed using thematic analysis. 26 stroke survivors and 35 family caregivers purposively sampled from multiple settings. RESULTS: Findings were summarized into seeking care and experience of healthcare encounters. Seeking care comprised of the following themes: factors influencing seeking care, decision to seek care and role of caregiver in seeking care. Experience of healthcare encounters comprised of the following themes: service around the patient, service with care and role of caregiver in healthcare encounters. CONCLUSION: Multi-dimensional role of caregivers in healthcare experience emerged as a major finding. Unique to our Asian context, as per the participants' accounts, family caregivers seemed to be central in healthcare decision-making for stroke survivors, with adult-child caregivers commonly reported being engaged in collaborative decision-making. While spousal caregivers preferred a relational healthcare experience, adult-child caregivers preferred a transactional one. Practical implications include equipping caregivers with skillset to make healthcare decisions, provision of supportive decision-making environment for caregivers and reinforcing communication aspects in the medical, nursing and allied healthcare curriculum to improve healthcare experience.


Asunto(s)
Cuidadores , Accidente Cerebrovascular , Adulto , Atención a la Salud , Humanos , Investigación Cualitativa , Accidente Cerebrovascular/terapia , Sobrevivientes
6.
J Med Case Rep ; 15(1): 549, 2021 Nov 05.
Artículo en Inglés | MEDLINE | ID: mdl-34740369

RESUMEN

BACKGROUND: The aim of this study is to highlight the importance of having a central case managing team and to make some strong recommendations that can have a positive impact on the lives of hematopoietic stem cell transplantation survivors. CASE PRESENTATION: A 2-year-old white child who was diagnosed with acute myeloid leukemia and underwent hematopoietic stem cell transplantation in May 2014 relapsed in March 2017, and underwent a second hematopoietic stem cell transplantation in July 2017, at which point he suffered from graft-versus-host disease. This case report presents his journey and that of his caregivers, and the challenges they faced as patient and parents in pursuit of optimal quality of life during the survivorship period. The case study emphasizes not only the challenges faced by patients but also identified gaps in post-hematopoietic cell transplantation care service delivery. Furthermore, the case study also highlights the importance of involving caregivers in post-transplant care and having a better communication process and service facilitation process throughout the journey of the patient and their carer. CONCLUSIONS: Transplant centers have a duty of care, and a proactive approach with a well-defined pathway is needed for managing post-transplant complications and reducing stress and anxiety for patients and their caregivers.


Asunto(s)
Enfermedad Injerto contra Huésped , Trasplante de Células Madre Hematopoyéticas , Leucemia Mieloide Aguda , Ansiedad/terapia , Cuidadores , Preescolar , Enfermedad Injerto contra Huésped/prevención & control , Humanos , Leucemia Mieloide Aguda/terapia , Calidad de Vida
7.
BMC Health Serv Res ; 21(1): 1241, 2021 Nov 17.
Artículo en Inglés | MEDLINE | ID: mdl-34789258

RESUMEN

BACKGROUND: The term 'safeguarding' covers the protection of health, wellbeing and human rights. Effective safeguarding enables people (particularly children, young adults and other vulnerable people) to live free from fear of abuse, harm or neglect. The UK Children Act 2004 required key agencies, including health and social care providers, to consider the need to safeguard children and promote their welfare. Within a larger evidence synthesis project, we sought to identify and map service development interventions (excluding provision of training) aimed at improving awareness of safeguarding and identifying at-risk children and young people in health and social care settings. METHODS: We searched fourteen health and social care databases from 2004 (date of Children Act) to October 2019 and updated the review via a citation search in March 2021. Studies of any design were eligible if they described or evaluated an intervention (other than training) aimed at health or social care professionals in the United Kingdom and designed to improve recognition of risk in the context of safeguarding children and young people. Studies with no intervention (e.g. qualitative studies) were included to explain why interventions work or fail to work. Included studies were summarised using narrative synthesis. Risk of bias of included studies and overall strength of evidence were assessed using standard methods. We used a 5-item checklist ("TIDieR-Lite") to map intervention components. RESULTS: Thirty-nine publications were included, of which 31 dealt with service developments, six with use of data and two with other initiatives. Promising service development initiatives include liaison nurses, assessment clinics, secondment, joint protocols and a 'hub and spoke' model. Initiatives involving use of routine data appeared promising and unlikely to generate significant additional costs. However, the quality of the evidence was generally low, with a shortage of controlled and long-term studies. CONCLUSIONS: Health and social care services wishing to improve awareness of child safeguarding issues may benefit from looking beyond high-quality training provision. Future research should focus on service-relevant outcomes and ensure the active involvement of young people and their families/carers.


Asunto(s)
Cuidadores , Apoyo Social , Adolescente , Niño , Humanos , Investigación Cualitativa , Reino Unido , Adulto Joven
8.
Am J Occup Ther ; 75(6)2021 Nov 01.
Artículo en Inglés | MEDLINE | ID: mdl-34792541

RESUMEN

Evidence Connection articles provide a clinical application of systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Project. In this Evidence Connection article, I describe a clinical case report of an older adult with a chronic condition and his daughter who received home health occupational therapy services. I discuss the occupational therapy evaluation and intervention processes with these clients to support chronic condition self-management, coping skills, and problem solving, drawing on findings from the systematic review on the effectiveness of interventions for care partners of people with chronic conditions published in the July/August 2021 issue of the American Journal of Occupational Therapy. It is my hope that this Evidence Connection article can be used to inform and guide clinical decision making when working with older adults with chronic conditions and their care partners.


Asunto(s)
Terapia Ocupacional , Adaptación Psicológica , Anciano , Cuidadores , Práctica Clínica Basada en la Evidencia , Humanos , Revisiones Sistemáticas como Asunto
9.
BMC Geriatr ; 21(1): 629, 2021 11 04.
Artículo en Inglés | MEDLINE | ID: mdl-34736394

RESUMEN

BACKGROUND: There are about 9.5 million people with dementia in China. Up to 99% of them are cared for by their family caregivers. Family caregivers are confronted with considerable difficulties and challenges while providing care. They often experience high levels of emotional, physical, financial, and social burdens. Caregivers in rural areas experience an even higher level of burden compared to their counterparts in urban areas due to fewer health resources for dementia care. However, so far, no intervention study has been conducted to support family caregivers in rural areas of China. The aim of this proposed study is to adapt and evaluate an evidence-based and culturally-tailored individualized telephone-based care support (ITBCS) program for family caregivers of people with dementia in rural China. METHODS: A cluster randomized controlled trial (RCT) will be conducted to evaluate the effectiveness of the ITBCS compared with usual care for Chinese rural family caregivers of people with dementia. A total sample of 168 rural family caregivers will be recruited. The intervention components consist of a 3-month intensive telephone-based care support intervention followed by telephone-based follow-up consultations for 6 months. The control group will receive usual care services available for them. Outcome measures include carers' subjective burden, depressive symptoms, health-related quality of life, social support, caregiving self-efficacy, and care recipients' difficult behaviours and competence in activities of daily living at 3, 9 and 15 months after baseline. The potential cost-effectiveness of the ITBCS compared with usual care will be assessed as well. DISCUSSION: If effective, the ITBCS program can be adapted and used in rural areas of China as a blueprint to improve the quality of home-based care for people with dementia. Findings from the present study are significant for developing evidence-based dementia care policy in rural China. TRIAL REGISTRATION: Chinese Clinical Trial Registry, ChiCTR2000038821 , Registered 4 April 2020, http://www.chictr.org.cn/showprojen.aspx?proj=62268 .


Asunto(s)
Cuidadores , Demencia , Demencia/epidemiología , Demencia/terapia , Humanos , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Apoyo Social , Teléfono
10.
BMC Med Inform Decis Mak ; 21(Suppl 10): 273, 2021 11 16.
Artículo en Inglés | MEDLINE | ID: mdl-34781953

RESUMEN

BACKGROUND: To meet the needs of aging and dementia patients in Taiwan, this study designed a nursing system that includes communication, location tracking, and fall detection, and early warning services. The main purpose of this research is to provide timely services to the elderly and patients and hope to reduce the burden when the number of nursing staff decreases. This article is a remote disease care service platform with the Internet of Things (IoT) devices to monitor the location of the elderly and whether they have dropped warning alerts. RESULTS: The device is connected to the patient's waist and chest, monitors the patient's movement and behavior, and transmits messages to the back-end system, and informs caregivers through mobile phone applications when unexpected or shocking events occur. The system can identify whether the patient has fallen, accidentally, or long-term inactivity. The device is equipped with sensors that enable it to monitor the patient's location and behavior data through Bluetooth and GPS technology. Finally, we proposed a basic model and an integrated model that will industrialize the system and is expected to play a role in a larger patient population. CONCLUSIONS: The system developed in this research has passed the Activities of Daily Living (ADL) test and verification, and is expected to provide appropriate safety care services for nursing homes and elderly residences.


Asunto(s)
Enfermedad de Alzheimer , Internet de las Cosas , Actividades Cotidianas , Anciano , Enfermedad de Alzheimer/diagnóstico , Cuidadores , Humanos , Casas de Salud
11.
BMC Geriatr ; 21(1): 646, 2021 11 16.
Artículo en Inglés | MEDLINE | ID: mdl-34784883

RESUMEN

BACKGROUND: Among potentially modifiable risk factors for delirium, transfers between wards, hospitals and other facilities have been mentioned with low evidence. TRADE (TRAnsport and DElirium in older people) was set up to investigate i) the impact of transfer and/or discharge on the onset of delirium in older adults and ii) feasibility and acceptance of a developed complex intervention targeting caregiver's participation during and after hospital discharge or transfer on cognition and the onset of delirium in older adults. METHODS: The study is designed according to the guidelines of the UK Medical Research Council (MRC) for development and evaluation of complex interventions and comprises two steps: development and feasibility/piloting. The development phase includes i) a multicenter observational prospective cohort study to assess delirium incidence and cognitive decline associated with transfer and discharge, ii) a systematic review of the literature, iii) stakeholder focus group interviews and iv) an expert workshop followed by a Delphi survey. Based on this information, a complex intervention to better and systematically involve family caregivers in discharge and transport was developed. The intervention will be tested in a pilot study using a stepped wedge design with a detailed process and health economic evaluation. The study is conducted at four acute care hospitals in southwest Germany. Primary endpoints are the delirium incidence and cognitive function. Secondary endpoints include prevalence of caregiver companionship, functional decline, cost and cost effectiveness, quality of discharge management and quality of admission management in admitting hospitals or nursing homes. Data will be collected prior to discharge as well as after 3, 7 and 90 days. DISCUSSION: TRADE will help to evaluate transfer and discharge as a possible risk factor for delirium. In addition, TRADE evaluates the impact and modifiability of caregiver's participation during patient's transfer or discharge on delirium incidence and cognitive decline providing the foundation for a confirmatory implementation study. TRIAL REGISTRATION: DRKS (Deutsches Register für klinische Studien) DRKS00017828 . Registered on 17th September 2019. Retrospectively registered.


Asunto(s)
Delirio , Alta del Paciente , Anciano , Cuidadores , Delirio/diagnóstico , Delirio/epidemiología , Delirio/prevención & control , Hospitales , Humanos , Estudios Multicéntricos como Asunto , Proyectos Piloto , Estudios Prospectivos , Revisiones Sistemáticas como Asunto
12.
Healthc Pap ; 20(1): 66-77, 2021 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-34792463

RESUMEN

The dominant narrative through the pandemic focused on the perils associated with the transmission of COVID-19. This led to restrictive policies in long-term care that prevented family caregivers from being physically present to participate in their loved ones' care. There is growing evidence that such policies resulted in harm to residents, family members and staff. The path forward highlights the need for balanced policies and practices to ensure that compassionate, person-centred and partnered care is not lost, whether in times of calm or crisis.


Asunto(s)
COVID-19 , Cuidadores , Humanos , Cuidados a Largo Plazo , Pandemias/prevención & control , SARS-CoV-2
13.
Am J Hosp Palliat Care ; 38(12): 1541-1543, 2021 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-34806434

RESUMEN

Caring for the Family Caregiver is published by Oxford University Press and introduces the novel framework of the Family Caregiver Communication Typology. The volume offers a close analysis of caregiver health literacy and patient outcomes and invites readers to consider the family system as the driver in shaping how family caregivers deal with chronic illness demands. The expertise of all authors (three health communication scholars and one nurse who is a health literacy expert) in the analysis illuminates the delicate balance between caregivers' ability to understand and communicate in the context of social determinants of health. The book shares the interwoven challenges of palliative care, family caregiving, and health literacy. Caring for the Family Caregiver establishes the urgent call to address family caregiver information and communication needs and leaves the reader empowered to make changes in their own clinical practice communication and/or develop family caregiving research that addresses cultural and social factors.


Asunto(s)
Cuidadores , Alfabetización en Salud , Libros , Comunicación , Humanos , Cuidados Paliativos , Universidades
14.
Health Qual Life Outcomes ; 19(1): 258, 2021 Nov 18.
Artículo en Inglés | MEDLINE | ID: mdl-34794439

RESUMEN

OBJECTIVE: Resilience instruments specific to family caregivers (FCs) in cancer are limited. This study was designed to validate the 10-item Resilience Scale Specific to Cancer (RS-SC-10) in FCs using multidimensional item response theory (MIRT) analysis. METHODS: 382 FCs were enrolled from Be Resilient to Cancer Program (BRCP) and administered with RS-SC-10 and 36-item Short Form Health Survey (SF-36). MIRT was performed to evaluate item parameters while Generalized Additive Model (GAM) and Latent Profile Analysis (LPA) were performed to test the non-linear relationship between resilience (RS-SC-10) and Quality of Life (QoL, SF-36). RESULTS: RS-SC-10 retained 10 items with high multidimensional discrimination, monotonous thresholds and its original two-factor structure (Generic and Shift-Persist). Four latent resilience subgroups were identified and a non-linear dose-response pattern between resilience and QoL was confirmed (per-SD increase OR = 1.62, 95% CI 1.16-2.13, p = 0.0019). CONCLUSION: RS-SC-10 is a brief and suitable resilience instrument for FCs in cancer. The resilience screening of patients and FCs can be performed simultaneously in clinical practice.


Asunto(s)
Neoplasias , Calidad de Vida , Cuidadores , Humanos , Tamizaje Masivo , Psicometría , Encuestas y Cuestionarios
15.
J Aging Stud ; 59: 100967, 2021 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-34794712

RESUMEN

It has been argued that older people living with dementia often experience stigma. Several media interventions have been designed to raise public awareness about dementia, as well as to de-stigmatise the condition and people living with it; however, few studies have investigated how media interventions may serve to reduce stigma. The present study focused on a Chinese reality show, Forget Me Not Café, which brought together five older people (aged 65 and older) living with dementia to run a pop-up restaurant and intended to reduce the stigma of dementia. The study aimed to explore how the reality show cast talk (or write) about dementia in older people. This study performed a thematic analysis on the written and spoken content about how the show presented dementia in older people. Four discursive themes were identified, including: age as a risk factor for dementia; early signs and symptoms of dementia in older people; the pressure on the family of people with dementia; and expectations of people living with dementia. The findings of this study show that the views of the reality show cast highlight the capability of older people with dementia to communicate effectively and live with the condition, their personal goals of sustaining a happy, meaningful, and sociable life, and the actions they took to positively influence personal circumstances. The findings also indicate that this reality show might help reduce the stigma of dementia and empower older people living with dementia, while it also tends to stress the responsibility for care on family carers and shift the responsibility of managing the dementia-related challenges to older people living with dementia. These suggest a neoliberal tenet of personal responsibility for health in China. Given the media's role in reflecting and shaping perceptions and attitudes towards dementia and people living with it, this study contributes to a greater understanding of the ways in which reality shows can be used to promote awareness and challenge the stigma of dementia and arguably other conditions.


Asunto(s)
Demencia , Restaurantes , Anciano , Actitud , Cuidadores , Humanos , Estigma Social
16.
Dementia (London) ; 20(7): 2294-2306, 2021 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-34724844

RESUMEN

Some spousal carers experience their current relationship with the person with dementia as a continuation of the loving relationship they shared prior to the onset of dementia. For others, the experience is one of discontinuity; the prior relationship is lost and replaced with a different kind of relationship. The aim of this study was to investigate whether these differences are associated with particular symptoms of dementia. Thirty-five spousal carers completed the Birmingham Relationship Continuity Measure, the Revised Memory and Behavior Checklist (providing scores relating to cognitive decline, depression and challenging interpersonal behaviour), the Communicative Effectiveness Index and the Bristol Activities of Daily Living Scale. Experiencing discontinuity in the relationship was significantly correlated with communication difficulties, challenging interpersonal behaviour and the need for assistance in activities of daily living, but not with cognitive decline or depression. In a multiple regression, only the measures of challenging interpersonal behaviour and activities of daily living made significant unique contributions to the variance in continuity/discontinuity scores. Discontinuity is associated with reduced psychological well-being for the spousal carer and the provision of less person-centred care. Understanding which symptoms are more likely to lead to discontinuity allows the identification of those at risk of these experiences. Those at risk may require support to enable them to make sense of, and adjust to, certain symptoms of dementia in a way that has a less negative impact on their relationship.


Asunto(s)
Cuidadores , Demencia , Actividades Cotidianas , Comunicación , Humanos , Percepción
17.
J Craniofac Surg ; 32(8): 2687-2691, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34727472

RESUMEN

ABSTRACT: Children with craniofacial microsomia (CFM) are at increased risk for educational and social concerns. This study describes intervention services and frequency of teasing in a multinational population of children with CFM. Caregivers of children with CFM ages 3 to 18 years in the US and South America were administered a questionnaire. Additional information was gathered from medical charts and photographs. Participants (N = 169) had an average age of 10.1 ±â€Š6.2 years, were primarily male (60%), and from the US (46%) or Colombia (32%). Most participants had microtia and mandibular hypoplasia (70%). They often had unilateral (71%) or bilateral (19%) hearing loss and 53% used a hearing aid. In the US, special education services were provided for 48% of participants enrolled in school; however, similar services were rare (4%) in South America and reflect differences in education systems. Access to any intervention service was higher in the US (80%) than in South America (48%). Caregivers reported children showed diagnosis awareness by an average age of 4.4 ±â€Š1.9 years. Current or past teasing was reported in 41% of the children, starting at a mean age of 6.0 ±â€Š2.4 years, and most often took place at school (86%). As half of the US participants received developmental and academic interventions, providers should screen for needs and facilitate access to services. Given diagnosis awareness at age 4 and teasing at age 6, providers are encouraged to assess for psychosocial concerns and link to resources early in treatment.


Asunto(s)
Microtia Congénita , Síndrome de Goldenhar , Adolescente , Cuidadores , Niño , Preescolar , Síndrome de Goldenhar/epidemiología , Humanos , Masculino , Padres , Prevalencia
18.
Occup Ther Int ; 2021: 9921710, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34729057

RESUMEN

Purpose: Often people with spinal cord injury (SCI) require help from their caregivers to carry out activities of daily living. Such assistance may affect caregiver quality of life (QoL). This study investigates the QoL and its associated risk factors among caregivers of people with SCI to find possible ways to increase their QoL. Material and Method. A convenience sample of 135 Iranian caregivers of people with SCI participated in a cross-sectional study from the Brain and Spinal Injury Repair Research Center of Tehran (BASIR), Iran, from June 2018 to October 2019. The World Health Organization's Quality of Life Questionnaire (WHOQoL-BREF), the Beck Depression Inventory-II (BDI-II), the Caregiver Burden Scale (CBS), and a demographic questionnaire were administered. Hierarchical multiple linear regression analysis was then applied to identify risk factors associated with caregiver QoL. Results: Moderate to highly significant negative correlations were observed between all domains of the WHOQoL scale and subscales of the CBS and the BDI-II. After controlling for demographic and clinical variables, depression, burden, and level of injury were found to predict caregiver QoL significantly. Furthermore, QoL was lower in caregivers of people with quadriplegia than paraplegia (p < 0.05). Conclusions: The level of injury, self-perceived caregiver burden, and depression are associated with QoL for the caregivers of people with SCI. A holistic approach incorporating caregiver training, psychological interventions, and adequate support may enable better QoL for these caregivers.


Asunto(s)
Terapia Ocupacional , Traumatismos de la Médula Espinal , Actividades Cotidianas , Cuidadores , Estudios Transversales , Humanos , Irán , Calidad de Vida
19.
Stud Health Technol Inform ; 285: 233-238, 2021 Oct 27.
Artículo en Inglés | MEDLINE | ID: mdl-34734879

RESUMEN

Emergency care is very complex in that it requires patient-centered care in a coordinated manner among multiple providers in a highly distractible, unpredictable and stressful environment. Sharing information efficiently between providers in this context is difficult. Connecting emergency providers with each other through a digital communication channel could improve the efficiency of information sharing and emergency care. This study describes the development process of PIMPmyHospital, a mobile app dedicated to emergency department physicians and nurses to collaboratively manage their patients. We relied on a user-centered design process involving caregivers from a pediatric emergency department. The process started with semi-structured interviews that informed the specifications of the app, followed by an iterative design and development approach. The resulting prototype was evaluated by end-users using the perceived usefulness dimension of the technology acceptance model questionnaire. Early user engagement during the design and development of a dedicated mobile app must be taken into account to improve its perceived usefulness and future adoption.


Asunto(s)
Aplicaciones Móviles , Cuidadores , Niño , Servicio de Urgencia en Hospital , Humanos , Encuestas y Cuestionarios , Tecnología
20.
BMC Health Serv Res ; 21(1): 1202, 2021 Nov 05.
Artículo en Inglés | MEDLINE | ID: mdl-34740349

RESUMEN

BACKGROUND: The purpose of this study was to examine the association of patient delirium in the intensive care unit (ICU) with patterns of anxiety symptoms in family caregivers when delirium was determined by clinical assessment and family-administered delirium detection. METHODS: In this cross-sectional study, consecutive adult patients anticipated to remain in the ICU for longer than 24 h were eligible for participation given at least one present family caregiver (e.g., spouse, friend) provided informed consent (to be enrolled as a dyad) and were eligible for delirium detection (i.e., Richmond Agitation-Sedation Scale score ≥ - 3). Generalized Anxiety Disorder-7 (GAD-7) was used to assess self-reported symptoms of anxiety. Clinical assessment (Confusion Assessment Method for ICU, CAM-ICU) and family-administered delirium detection (Sour Seven) were completed once daily for up to five days. RESULTS: We included 147 family caregivers; the mean age was 54.3 years (standard deviation [SD] 14.3 years) and 74% (n = 129) were female. Fifty (34% [95% confidence interval [CI] 26.4-42.2]) caregivers experienced clinically significant symptoms of anxiety (median GAD-7 score 16.0 [interquartile range 6]). The most prevalent symptoms of anxiety were "Feeling nervous, anxious or on edge" (96.0% [95%CI 85.2-99.0]); "Not being able to stop or control worrying" (88.0% [95%CI 75.6-94.5]; "Worrying too much about different things" and "Feeling afraid as if something awful might happen" (84.0% [95%CI 71.0-91.8], for both). Family caregivers of critically ill adults with delirium were significantly more likely to report "Worrying too much about different things" more than half of the time (CAM-ICU, Odds Ratio [OR] 2.27 [95%CI 1.04-4.91]; Sour Seven, OR 2.28 [95%CI 1.00-5.23]). CONCLUSIONS: Family caregivers of critically ill adults with delirium frequently experience clinically significant anxiety and are significantly more likely to report frequently worrying too much about different things. Future work is needed to develop mental health interventions for the diversity of anxiety symptoms experienced by family members of critically ill patients. TRIAL REGISTRATION: This study is registered on ClinicalTrials.gov ( https://clinicaltrials.gov/ct2/show/NCT03379129 ).


Asunto(s)
Cuidadores , Delirio , Adulto , Anciano , Ansiedad/diagnóstico , Ansiedad/epidemiología , Enfermedad Crítica , Estudios Transversales , Delirio/diagnóstico , Delirio/epidemiología , Femenino , Humanos , Unidades de Cuidados Intensivos , Masculino , Persona de Mediana Edad
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