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1.
Rev Bras Enferm ; 76(1): e20210930, 2023.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-36722644

RESUMEN

OBJECTIVES: to construct and validate an instrument to assess the knowledge, attitudes, and practices related to pressure injury prevention among caregivers of institutionalized older people. METHODS: this is a three-stage methodological study that consisted of instrument construction, analysis by experts, and semantic and appearance analysis, with 78 participants, observing the validation process steps for psychometric instruments in the criteria of clarity and relevance. RESULTS: in the Delphi I round, the validity index of the general content in the clarity criterion was 0.66, in relevance 0.85, and the Kappa value was >0.76. In Delphi II, clarity was 0.95, relevance 1.00, and the Kappa value was >0.97. CONCLUSIONS: this is a valid instrument in terms of content and appearance, which allows further analysis of its reliability for the measurement of the constructs for which it is intended. Therefore, it can be considered a tool for care management in pressure injury prevention.


Asunto(s)
Cuidadores , Úlcera por Presión , Humanos , Anciano , Úlcera por Presión/prevención & control , Reproducibilidad de los Resultados , Conocimiento , Psicometría
2.
Rev Bras Enferm ; 76(1): e20220201, 2023.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-36722648

RESUMEN

OBJECTIVES: to map and summarize the existing scientific evidence on parents' transition experience to exercise the caregiver role of a child with 1DM, identifying gaps in knowledge of this experience. METHODS: a scoping review was carried out based on JBI methodology, in two databases, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. RESULTS: we included 31 articles. From the studies, constitutive elements of parents' transition experience to caregiver role of a child with 1DM were found, which focused on the nature of the experience, the feelings and emotions experienced, the hindering conditions, the facilitating conditions, the strategies used by parents and the results or effects obtained. FINAL CONSIDERATIONS: the transition process' characterizing elements were identified, but not a theoretical explanation of it. Additional research should be carried out in order to allow a deeper understanding of this process.


Asunto(s)
Diabetes Mellitus Tipo 1 , Niño , Humanos , Cuidadores , Lista de Verificación , Bases de Datos Factuales , Padres
3.
BMJ Open ; 13(2): e069500, 2023 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-36725093

RESUMEN

OBJECTIVES: Early developmental assessment is crucial for effective support and intervention. This study examined factors that contribute to (a) older child age when caregivers first became concerned about their child's development and (b) older child age at the point of entry into developmental and diagnostic assessment. We also quantified how factors contributed to risk of children not receiving an assessment by 5 years and considered the acceptability of electronic data capture for families. DESIGN: This cross-sectional study collected information about caregiver developmental concerns, family history and child characteristics. SETTING: Children and families entered a large, publicly funded hospital-based paediatric developmental assessment service. PARTICIPANTS: Consecutively enrolled children (N=916) aged 6 months to 17 years with neurodevelopmental concerns and their caregivers. MAIN OUTCOMES AND MEASURES: A developmental history questionnaire completed by caregivers. RESULTS: The average age that caregivers identified developmental concerns was 3.0 years of age but the average age of a receiving a developmental assessment was 6.6 years. Only 46.4% of children received a diagnostic assessment by 5 years of age, even though 88.0% of caregivers were concerned about their child's development by that age. Parental age, relationship status, education level, prior use of support services and being from a culturally and linguistically diverse background contributed to age at identification of concern, age at diagnostic assessment and the likelihood of receiving a diagnostic assessment by 5 years. Electronic data capture had high acceptability, with 88.2% of caregivers reporting a preference for electronic completion of questionnaires. CONCLUSIONS: The study shows a substantial delay in diagnostic assessments that leaves most vulnerable children without an assessment by school age and highlights contributors to delays. These delays highlight the complexity of delivering early intervention and support policies that rely on swift and appropriate developmental assessment to vulnerable families.


Asunto(s)
Diagnóstico Tardío , Trastornos del Neurodesarrollo , Niño , Humanos , Adolescente , Preescolar , Estudios Transversales , Padres , Desarrollo Infantil , Trastornos del Neurodesarrollo/diagnóstico , Cuidadores
4.
BMC Geriatr ; 23(1): 63, 2023 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-36726055

RESUMEN

BACKGROUND AND OBJECTIVES: Visual impairment (VI) and dementia both increase with age, and it is likely that many older people are living with both conditions. This scoping review aims to investigate the prevalence and types of VI among older people living with dementia, and the impact of VI on older people living with dementia and their caregivers. METHODS: This scoping review used Arksey and O'Malley's methodological framework. Studies in any setting involving people living with dementia and some assessment of either VI, eye diseases causing VI or the impact of VI were included. RESULTS: Thirty-six studies were included. Thirty-one studies reported the prevalence of VI in older people living with dementia, while ten studies reported on impacts of VI on people living with dementia. Only one study reported on impacts on caregivers. The prevalence of VI or specific eye diseases among older people living with dementia ranged from 0.2 to 74%. The impacts of VI on older people living with dementia included increased use of hospital services, increased disability and dependency, reduced social engagement, negative emotions, increased abnormal behaviours, loss of hobbies, difficulty in using visual aids or memory aids, and greater Neuropsychiatric Inventory symptoms. And the impacts on caregivers included increased conflict and physical exhaustion. CONCLUSION: VI is common in older people living with dementia and is associated with negative impacts on those with dementia and their caregivers. However, heterogeneity between studies in terms of setting and method for assessing and defining VI make it difficult to compare findings among studies. Further research is needed, particularly assessing the impact on caregivers.


Asunto(s)
Demencia , Oftalmopatías , Baja Visión , Humanos , Anciano , Prevalencia , Demencia/diagnóstico , Demencia/epidemiología , Demencia/psicología , Baja Visión/epidemiología , Cuidadores/psicología
5.
BMC Geriatr ; 23(1): 62, 2023 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-36726077

RESUMEN

BACKGROUND: Technology innovation provides an opportunity to support the rising number of people living with dementia globally. The present study examines experiences of people who have dementia and live in technology enriched supported care models. Additionally, it explores caregiver's attitudes towards technology use with the housing scheme. METHODS: A qualitative research design was adopted, and eight housing schemes consented to take part in the study. A technology audit was undertaken in addition to participant interviews and caregiver survey. Seven peer researchers conducted semi-structured interviews with 22 people living with dementia. Interviews were analysed using thematic analysis. Informal and formal caregivers were invited to complete a survey to capture their attitudes towards technology use. A total of 20 informal and 31 formal caregiver surveys were returned. All surveys were input into Survey Monkey and downloaded into excel for analysis. Closed questions were analysed using descriptive statistics and open-ended questions were organised into themes and described descriptively. RESULTS: The technology audit identified that technologies were in place from as early as 2002. Technology heterogeneity of, both passive and active devices, was found within the housing schemes. Technologies such as wearable devices were reportedly used according to need, and mobile phone use was widely adopted. The themes that developed out of the tenant interviews were: Attitudes and Engagement with Technology; Technology Enhancing Tenants Sense of Security; Seeking Support and Digital Literacy; and Technology Enabled Connection. A lack of awareness about living alongside technology was a major finding. Technologies enabled a sense of reassurance and facilitated connections with the wider community. The interaction with technology presented challenges, for example, remembering passwords, access to Wi-Fi and the identification of its use in an emergency. The caregiver survey reported a range of facilitators and barriers for the use of technology within care. Both types of caregivers held relatively similar views around the benefits of technology, however their views on issues such as privacy and consent varied. Safety was considered more important than right to privacy by family caregivers. CONCLUSIONS: The present study provides new insight into stakeholder's experiences of living, working and caregiving alongside technology in supported living environments. As the generation of people living with dementia become more tech savvy, harnessing everyday technologies to support care could enable holistic care and support the transition through the care continuum. Advance care planning and technology assessments are at the very core of future technology provision. It is evident that a paternalistic attitudes towards technology use could impact the multitude of benefits technology can play in both health and leisure for people living with dementia and their caregivers.


Asunto(s)
Demencia , Psicoterapia de Grupo , Humanos , Demencia/terapia , Cuidadores , Investigación Cualitativa , Tecnología
6.
Rev Lat Am Enfermagem ; 31: e3657, 2023.
Artículo en Inglés, Portugués, Español | MEDLINE | ID: mdl-36722630

RESUMEN

OBJECTIVE: to evaluate the effect of nursing home care interventions on the quality of life in family caregivers of aged stroke survivors. METHOD: a Randomized Clinical Trial, blinded for outcome evaluation. Forty-eighty family caregivers of aged stroke survivors participated in the study. The Intervention Group received three home visits by nurses one month after hospital discharge to provide stroke-related education (i.e., how to access health services and perform care activities) and emotional support. The Control Group received the usual guidance from the health services. Quality of life was assessed using the World Health Organization Quality of Life Assessment (WHOQOL-BREF) instrument and the Old Module(WHOQOL-OLD) 1 week, 2 months, and 1 year after discharge. RESULTS: the caregivers were mainly women, children, or spouses. The caregivers in the Intervention Group and Control Group did not significantly differ in terms of their Overall Quality of Life at baseline. There was no interaction effect between group allocation and Overall Quality of Life(p=0.625) over time. However, there was an interaction effect for Social Relations(p=0.019) and Autonomy (p=0.004). CONCLUSION: the intervention exerted a statistically significant effect on the quality of life of family caregivers with respect to social relationships and autonomy. TRIAL REGISTRATION: NCT02807012.


Asunto(s)
Calidad de Vida , Accidente Cerebrovascular , Niño , Humanos , Femenino , Anciano , Masculino , Cuidadores , Brasil , Accidente Cerebrovascular/terapia , Sobrevivientes
7.
BMC Geriatr ; 23(1): 60, 2023 Jan 31.
Artículo en Inglés | MEDLINE | ID: mdl-36721085

RESUMEN

BACKGROUND: Informal caregivers of older adults with dementia may experience substantial burdens during their caregiving process, especially when caring for older adults with other comorbid conditions. This study evaluated whether and how comorbidity burden for persons with dementia (PWD) was associated with caregivers' physical, psychological, social, and financial burden as well as caregiving gain. METHODS: Data were from 1,065 community-dwelling older adults living with dementia and their primary caregivers in the National Health and Aging Trends Study and the National Study of Caregiving. PWD's comorbidity burden was measured by the count of chronic conditions and the pattern of comorbidity identified by the latent class analysis (LCA). We considered four domains of caregiving burden-physical, psychological, social, and financial burden. We used linear regressions to identify the unadjusted and adjusted associations between PWD's comorbidity burden and caregiving burden and gain. RESULTS: Of 1,065 PWD, 13.5% had 0-1 and 24.9% had 5 or more number of comorbid chronic conditions, respectively. After multivariable adjustment, an additional chronic condition is associated with an 0.11- and 0.36-point increase in caregivers' physical and psychological burden, respectively. Caregivers of PWD with 5 or more chronic conditions had a 0.64- and 2.22-point higher score of physical and psychological burden, respectively, than those caring for PWD with 0 or 1 comorbid condition. LCA divided PWD into two classes, a high comorbidity class (69.0%) and a low comorbidity class (31.0%). Caregivers of PWD in the high comorbidity burden class had a 0.46-point higher score of physical caregiving burden than those in the low comorbidity burden class. No significant association was found between care recipients' comorbidity burden and their caregivers' social and financial burden or caregiving gain. CONCLUSIONS: The comorbidity burden of PWD was associated with their caregivers' physical and psychological caregiving burden. Relevant interventions to manage the comorbid conditions of people living with dementia and support their caregivers are crucial to improving their physical health and psychological wellbeing.


Asunto(s)
Cuidadores , Demencia , Humanos , Anciano , Estrés Financiero , Envejecimiento , Comorbilidad , Demencia/diagnóstico , Demencia/epidemiología , Demencia/terapia
8.
BMC Public Health ; 23(1): 213, 2023 Jan 31.
Artículo en Inglés | MEDLINE | ID: mdl-36721139

RESUMEN

BACKGROUND: Prompt diagnosis and appropriate management of diabetes has the potential of improving survival and patient health outcomes. Yet many diabetes patients present themselves to health facilities at an advanced stage of the disease which complicates its management. Individual perceptions about diseases are known to play a critical role in informing responses and actions including seeking health care and self-care practices. However, little is documented in Tanzania regarding the perspectives of diabetes patients and their caregivers about the disease especially in rural settings. METHODS: We conducted 26 in-depth interviews involving 19 diabetes patients and 7 diabetes patient caregivers to explore in detail their perspectives on diabetes as a disease. Data was analyzed using thematic analysis with the help of NVivo9. RESULTS: Both patients and caregivers expressed mixed perceptions on diabetes causes. In addition to heredity, and the failure of the pancreas to function well, lifestyle factors including lack of physical activity and eating too many sugary and oily foods were common reported causes. However, none of the participants were clear on the mechanisms between the perceived causes and the actual occurrence of the disease. Perception on susceptibility to diabetes was low even among participants with the disease as they reported not having ever thought of getting the condition before they were diagnosed. Some caregivers expressed worry and fear on their susceptibility to inheriting diabetes from their relatives who had the condition. Diabetes was perceived as a severe and life-threatening condition that can easily cause death if not well managed. Participants indicated uncertainty on its prevention. CONCLUSION: This study shows mixed perspectives on the causes, susceptibility, severity and prevention of diabetes which were informed by the participants' limited knowledge and awareness about the disease. Interventions to strengthen responses to diabetes, which include buy-in from the patients and their caregiver's perspectives are essential to improve prevention, early diagnosis and appropriate management in rural settings.


Asunto(s)
Cuidadores , Diabetes Mellitus , Humanos , Tanzanía/epidemiología , Diabetes Mellitus/epidemiología , Diabetes Mellitus/terapia , Ejercicio Físico , Miedo
9.
BMC Health Serv Res ; 23(1): 102, 2023 Jan 31.
Artículo en Inglés | MEDLINE | ID: mdl-36721162

RESUMEN

BACKGROUND: There are challenges in healthcare service delivery in rural areas, and this may be especially true for persons with dementia, who have higher needs to access to the healthcare system, and may have difficulties to commute easily and safely to these services. There is a growing body of literature regarding geographical disparities, but there is no comprehensive systematic review of geographical differences in persons with dementia across all domains of care quality. Therefore, the objective of this study is to conduct a systematic review of the literature on rural and urban differences in quality of dementia care outcomes of persons with dementia across all quality-of-care domains. METHODS: We performed a digital search in Ovid MEDLINE on July 16, 2019, updated on May 3, 2021, for French or English records. We selected studies that reported outcome from at least one domain of quality of dementia care (Access, Integration, Effective Care, Efficient Care, Population Health, Safety, and Patient-Centered) in both rural and urban persons with dementia or caregivers. We used rigorous, systematic methods for screening, selection, data extraction and we analyzed outcomes reported by at least two studies using vote counting and appraised the certainty of evidence. Finally, we explored sources of heterogeneity. RESULTS: From the 38 included studies, we found differences in many dementia care domains. Rural persons with dementia had higher mortality rates (Population Health), lower visits to any physicians (Access), more hospitalizations but shorter stays (Integration), higher antipsychotic medications (Safety), lower use of home care services and higher use of nursing home (Patient-Centered Care) compared to urban persons with dementia. CONCLUSIONS: This comprehensive portrait of rural-urban differences in dementia care highlights possible geographically based inequities and can be used by researchers and decision makers to guide development of more equitable dementia care policies.


Asunto(s)
Demencia , Servicios de Atención de Salud a Domicilio , Humanos , Cuidadores , Geografía , Hospitalización , Demencia/terapia
10.
Artículo en Inglés | MEDLINE | ID: mdl-36673688

RESUMEN

This study explores the perception of social and educational quality of life in minors with rare diseases (RDs). Two meta-analyses were performed, applying the random effects model. Results: Regarding the social Quality of Life, the meta-sample consisted of k = 40 samples, with a total population of 1943 children (mean age = 9.42 years), of whom 687 (35.3%) were girls, 615 (31.4%) were boys and 641 (33%) did not report their sex. The effect size was large (mean size = 7.68; p < 0.000; 99% Confidence Interval; lower limit = 7.22; upper limit = 8.14). The results of the meta-regression and model analysis showed the importance of the measurement instrument (Paediatric Quality-of-Life Inventory and Prototypes of the Quality of life) and the dissimilarity of perception among caregivers. The nationality and the type of RD were not relevant. With respect to the educational Quality of Life, the meta-sample consisted of k = 19 samples, with 699 minors (mean age = 10.3 years), of whom 266 (38%) were girls, 242 (34.6%) were boys and 191 (27.4%) did not report their sex. The effect size was large (mean size = 7.15; p < 0.000; 99% CI; lower limit = 6.35; upper limit = 7.94). The meta-regression and comparison of models showed that the type of RD was essential. The measurement instrument was a moderating variable, especially the Parent version Paediatric Quality-of-Life Inventory. This study reveals the need for further research on RDs and their social-educational effects.


Asunto(s)
Calidad de Vida , Enfermedades Raras , Masculino , Niño , Femenino , Humanos , Escolaridad , Cuidadores , Percepción
11.
Artículo en Inglés | MEDLINE | ID: mdl-36673773

RESUMEN

OBJECTIVE: In this study, we investigated the effects of a mindfulness-based family psychoeducation (MBFPE) program on the mental-health outcomes of both caregivers and young adults with first-episode psychosis with an onset in the past three years through a multi-site randomized controlled trial. We also studied the outcomes of three potential mediating effects of interpersonal mindfulness, expressed emotions, and non-attachment on the program. METHOD: We randomly assigned 65 caregivers of young adults with psychosis to MBFPE (n = 33) or an ordinary family psychoeducation (FPE) program (n = 32); among them, 18 young adults in recovery also participated in the evaluation of outcomes. RESULTS: Intent-to-treat analyses were conducted. No significant time × group interaction effects of MBFPE and FPE programs were found in any of the caregivers' outcomes. However, the young adults with psychosis reported higher levels of recovery after the MBFPE program than after the ordinary FPE program (F = 8.268, p = 0.012, d = 1.484). They also reported a larger reduction in over-involvement of their caregivers (F = 4.846, p = 0.044, d = 1.136), showing that MBFPE had a superior effect to FPE in promoting recovery and reducing over-involvement. CONCLUSIONS: A brief psychoeducation program may not reduce the burden on or improve the mental-health outcome of caregivers of individuals with recent-onset psychosis. However, integrating mindfulness into a conventional family psychoeducation program may reduce the expressed emotions of caregivers, especially over-involvement. Further studies should explore how psychoeducation programs can reduce the impact of psychosis on family through sustainable effects in terms of reducing their burden and expressed emotions, using a rigorous study and adequate sample size.


Asunto(s)
Atención Plena , Trastornos Psicóticos , Humanos , Adulto Joven , Cuidadores/psicología , Trastornos Psicóticos/terapia , Trastornos Psicóticos/psicología , Salud Mental , Sistemas de Apoyo Psicosocial
12.
BMC Psychiatry ; 23(1): 72, 2023 Jan 26.
Artículo en Inglés | MEDLINE | ID: mdl-36703121

RESUMEN

BACKGROUND: The fear and lack of understanding of mental illness can lead to stigma. The stigma of mental illness affects not only individuals who suffer from it, but also the caregivers. Stigma among caregivers can lead to delay in seeking care, poor adherence to treatment and a high risk of relapse. Caregivers of patients with mental illness are at an increased risk of distress due to the burden to stigma and caregiving burden. An increase in caregivers' burden can lead to a reduction in caregivers' involvement. There is a relationship between caregivers' involvement, burden, and affiliated stigma. The present study examined the mediating role of affiliated stigma in the relationship between caregivers' burden and involvement among informal caregivers of hospital-admitted patients with mental illness in Uganda. METHODS: A cross-sectional study was conducted among 428 informal caregivers (mean age: 39.6 years [SD±14.6]; females = 62.1%). Information was collected regarding sociodemographic characteristics, affiliated stigma, and the involvement and burden of informal caregivers. RESULTS: The findings indicate that affiliated stigma serves as a full mediator between the caregiver's roles and involvement (ß=15.97, p<0.001). Being female increased the caregivers' burden of caregiving (ß= -0.23, p<0.001). CONCLUSION: The findings in the present study suggest that intervention to address affiliated stigma among caregivers of patients with mental illness should be incorporated into mainstream mental health care to reduce the caregiving burden.


Asunto(s)
Cuidadores , Trastornos Mentales , Humanos , Femenino , Adulto , Masculino , Cuidadores/psicología , Estudios Transversales , Estigma Social , Pacientes Internos
13.
Orphanet J Rare Dis ; 18(1): 18, 2023 Jan 26.
Artículo en Inglés | MEDLINE | ID: mdl-36703212

RESUMEN

BACKGROUND: Rare bone diseases (RBDs) are a set of inherited rare diseases that can cause disability and have a devastating impact on families affected, which may lead to a particular high prevalence of psychological disorders in patients and caregivers. Social support plays a role in the well-being of families with rare disease patients, but its effect on psychology of RBD families remains unclear. The purpose of the current cross-sectional quantitative study was to investigate the frequency of depression and anxiety, and their relationship with social support among RBD patients and family caregivers. RESULTS: A total of 196 participants responded to the questionnaire, including 72 patients and 124 caregivers. Depression was detected among 33.8% of patients and 57% of caregivers, and anxiety disorder was presented in 28.6% of patients and 50% of caregivers. Higher depression scores and anxiety scores were found in both patients and caregivers with an education level of ≤ middle school and monthly income of ≤ ï¿¥2000 (all P < 0.05). The mean (SD) scores of Social Support Rating Scales in patients and caregivers were 37.06 (8.05) and 38.31 (5.76), respectively. After adjusting for gender, age, monthly income, education, employment and marital status, the reverse associations between depression scores, anxiety scores and social support were found merely in caregivers (depression & social support: ß = - 0. 46, P < 0.001, anxiety & social support: ß = - 0. 44, P < 0.001), specifically for subjective support (depression & subjective support: ß = - 0.94, P < 0.001, anxiety & subjective support: ß = - 0.87, P < 0.001). CONCLUSIONS: The study identified a high prevalence of depression and anxiety among RBD patients and caregivers, and pointed out the significance of social support in alleviating psychological distress. In order to provide RBD families with comprehensive assistance, the government should actively develop programs aimed at psychological aid, policy advocacy and tangible support.


Asunto(s)
Enfermedades Óseas , Cuidadores , Humanos , Cuidadores/psicología , Enfermedades Raras , Depresión/etiología , Prevalencia , Estudios Transversales , Ansiedad/epidemiología , Trastornos de Ansiedad , Apoyo Social , Encuestas y Cuestionarios
14.
Int J Geriatr Psychiatry ; 38(1): e5870, 2023 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-36703272

RESUMEN

OBJECTIVE: Parkinson's disease (PD) is a progressive neurodegenerative disease that can reduce quality of life (QOL). Previous research has explored patient specific factors that influence QOL; but understanding external factors that may also affect patient QOL, such as caregiver characteristics, can provide additional intervention targets that may improve QOL for both the person with PD and their caregiver. METHODS: We conducted a systematic review of existing literature on caregiver factors that are related to QOL for the person with PD. We developed a tailored search strategy in six databases and performed a screening procedure according to PRISMA guidelines. We synthesized findings from articles that met inclusion criteria using a narrative approach and identified themes categorizing caregiver factors associated with PD QOL. RESULTS: We found 32 full-text articles that fulfilled the inclusion criteria and passed the quality appraisal. Seven themes were identified, including: (1) burden, (2) strain, (3) QOL and satisfaction, (4) demographic factors, (5) psychological factors, (6) relationship factors, and (7) caregiver input. CONCLUSIONS: Our review presents critical insights into the role of the caregiver in the QOL of a person with PD. Findings reveal several targets for intervention to improve QOL in this population.


Asunto(s)
Enfermedades Neurodegenerativas , Enfermedad de Parkinson , Humanos , Calidad de Vida/psicología , Enfermedad de Parkinson/psicología , Cuidadores/psicología , Depresión/psicología
15.
NeuroRehabilitation ; 52(1): 83-91, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36617754

RESUMEN

BACKGROUND: Despite the widespread international use of the Affiliate Stigma Scale in the context of disability, much research on its psychometric properties has taken dubious statistical approaches. OBJECTIVE: The aim of this study was to examine the psychometric properties of the Affiliate Stigma Scale in a sample of Turkish spinal cord injury/disorder (SCI/D) caregivers. METHODS: Participants completed the Affiliate Stigma Scale, Zarit Burden Interview, and Generalized Anxiety Disorder-7. This study conducted a series of confirmatory factor analyses (CFAs) of the Turkish Affiliate Stigma Scale using its originally theorized 3-factor structure and a 1-factor structure, as well as an exploratory factor analysis (EFA) to refine the scale items to create a short form, with a final CFA of the items in the short form. RESULTS: The 3-factor and 1-factor CFAs of the 22 items from the Affiliate Stigma Scale suggested poor fit to the data across every fit index. An EFA yielded four factors, although the patterns of item loading onto the factors did not map in any discernible way to the original subscales theorized by the scale creators. A 1-factor CFA with the six items loading onto factor 1 of the EFA showed much better fit indices, with most achieving good or adequate fit. CONCLUSION: The current study supports a 1-factor solution with a short form comprised of six items, at least in Turkish and with SCI/D caregivers.


Asunto(s)
Cuidadores , Traumatismos de la Médula Espinal , Humanos , Psicometría , Estigma Social , Análisis Factorial , Encuestas y Cuestionarios , Reproducibilidad de los Resultados
16.
NeuroRehabilitation ; 52(1): 93-108, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36617757

RESUMEN

BACKGROUND: Parents often provide care to adult children veterans with polytrauma, traumatic brain injury, and/or post-traumatic stress disorder. OBJECTIVE: This two-arm randomized clinical trial compared interventions to help parent caregivers improve their depression, anxiety, and burden and manage care by decreasing troubling and concerning behaviors. METHODS: Interventions were six one-hour structured one-on-one behavioral sessions (REACH) or six 30-minute prerecorded online educational webinars. Both focused on knowledge, strategies for care, and coping, but REACH sessions were targeted, interactive, and skills-based. Quantitative and qualitative data were collected by telephone. Quantitative analyses included chi-squared test or independent samples t-test and repeated measures mixed linear modeling, with theme development for qualitative data. RESULTS: There were 163 parent caregivers, mostly mothers. During six months, participants in both arms improved significantly in depression, anxiety, burden, and reported veteran troubling and concerning behaviors. REACH caregivers showed a group by time improvement in concerning behaviors. Benefits included resources, self-reflection, not feeling alone, new skills, improved self-efficacy, and helping others. Specific concerns include exclusion from military and veteran care briefings and concern for the future. CONCLUSION: The positive response to both interventions provides opportunities for organizations with varying resources to provide support for parent caregivers. Interventions need to be targeted to parents' particular concerns and needs.


Asunto(s)
Veteranos , Adulto , Humanos , Niños Adultos , Cuidadores , Padres , Adaptación Psicológica
17.
NeuroRehabilitation ; 52(1): 137-147, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36617755

RESUMEN

BACKGROUND: Individuals with traumatic brain injury (TBI) in Latin America experience high levels of disability and extremely poor functional outcomes, and their informal caregivers play a key role in their rehabilitation and care. OBJECTIVE: To improve TBI rehabilitation through stronger informal caregiving, this study developed and evaluated an evidence-based and culturally appropriate Transition Assistance Program (TAP) for informal caregivers of individuals with TBI in Latin America, specifically targeting the time period before and after the transition from hospital to home. METHODS: A sample of 89 people with a new TBI and their primary informal caregiver (n = 178) was recruited from two hospitals in Mexico City, Mexico, and in Cali, Colombia. Caregivers were randomly assigned to either the TAP group or to a control group receiving the standard care provided by the hospital. Caregivers completed measures of depression and burden, and individuals with TBI completed measures of depression and self-perceived burden on caregivers before hospital discharge and at 2- and 4-month follow ups. RESULTS: Caregivers in the TAP group reported significantly lower burden than those in the control group and marginally lower depression. Individuals with TBI whose caregivers had been in the TAP group reported significantly lower depression than those whose caregivers had been in the control group, and a non-significant but lower self-perceived burden on their caregivers. CONCLUSION: The results suggest that the TAP has strong potential to benefit both TBI caregivers and individuals with TBI during the transition from acute TBI hospitalization to home in Latin America, generally showing small-or medium-sized effects on key outcomes.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Lesiones Encefálicas , Humanos , América Latina , Cuidadores , Lesiones Encefálicas/rehabilitación , México , Adaptación Psicológica , Calidad de Vida
18.
NeuroRehabilitation ; 52(1): 29-46, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36617756

RESUMEN

BACKGROUND: Acquired brain injury (BI) is associated with negative mental health outcomes for both people with BI, their caregivers (CG), and patient-CG dyads, which may be mitigated through increased resilience. However, little is known regarding the efficacy of resilience interventions focused on CGs of individuals with BI, as well as dyads, which may be instrumental for positive outcomes. OBJECTIVE: To systematically review the evidence of the efficacy of resilience interventions focused on CGs and/or dyads of individuals with BI. METHODS: A search of MEDLINE, Embase, APA PsycINFO, CINAHL with Full Text, Scopus, SCIE, and ESCI was conducted. Each title and abstract were screened by two authors independently. Each full text review, study data extraction, and study quality assessment was performed independently by two authors. Study quality was assessed using the Joanna Briggs Institute (JBI) critical appraisal tool. RESULTS: Out of 11,959 articles retrieved, 347 full text articles were assessed for review and 18 met inclusion criteria for data extraction and quality assessment. Resilience interventions were stratified into 5 different categories based on the type of intervention. CONCLUSION: This systematic review suggests that dyadic/CG resilience interventions may improve mental health related outcomes, but conclusions were limited secondary to heterogenous outcomes and lack of a standardized resiliency construct. Future efforts are compulsory to create a standardized resiliency construct and associated outcomes focused on persons with BI, their CGs, and dyads.


Asunto(s)
Lesiones Encefálicas , Cuidadores , Humanos , Cuidadores/psicología , Estudios Prospectivos
19.
NeuroRehabilitation ; 52(1): 59-69, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36617759

RESUMEN

BACKGROUND: People with traumatic brain injury (TBI) can lack awareness of their own emotions and often have problems with emotion dysregulation, affective disorders, and empathy deficits. These impairments are known to impact psychosocial behaviors and may contribute to the burden experienced by care partners of individuals with TBI. OBJECTIVE: To examine the associations of emotional awareness, emotional functioning, and empathy among participants with TBI with care partner burden. METHOD: This multisite, cross-sectional, observational study used data from 90 dyads (participants with TBI and their care partner) 1-year post-injury. Participants with TBI completed the Difficulty with Emotional Regulation Scale (DERS; Awareness, Clarity, Goals, Impulse, Nonacceptance, and Strategies subscales); PTSD Checklist-Civilian Version; NIH Toolbox Anger-Affect, Hostility and Aggression Subdomains; PHQ-9; GAD-7; and the Interpersonal Reactivity Index (empathic concern and perspective taking subscales). Care partners completed the Zarit Burden Inventory (ZBI) and provided demographic information. RESULTS: Care partners were predominately female (77%), and most were either a spouse/partner (55.2%) or parent (34.4%). In an unadjusted model that included assessments of emotional awareness, emotional functioning, and empathy of the participant with TBI, the DERS-Awareness and NIH-Hostility subscales accounted for a significant amount of variance associated with care partner burden. These findings persisted after adjusting for care partner age, relationship, education, and the functional status of the participant with TBI (ß= 0.493 and ß= 0.328, respectively). CONCLUSION: These findings suggest that high levels of hostility and low emotional self-awareness can significantly affect the burden felt by TBI care partners.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Empatía , Humanos , Femenino , Cuidadores/psicología , Estudios Transversales , Emociones , Lesiones Traumáticas del Encéfalo/psicología
20.
NeuroRehabilitation ; 52(1): 9-28, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36617762

RESUMEN

BACKGROUND: Caregivers of individuals with traumatic (TBI) or non-traumatic (nTBI) brain injuries are at risk of significant caregiver burden. Consequently, it is crucial to examine predictors of caregiver burden to enable early identification and intervention. OBJECTIVE: To examine predictors of caregiver burden in caregivers of individuals with TBI/nTBI. METHODS: A scoping review was conducted in the bibliographic databases PubMed, EMBASE (Ovid) and APA PsycInfo (EBSCO). Search terms included: 'acquired brain injur*', 'traumatic brain injur*', 'brain injur*', 'non-traumatic brain injur*', or 'stroke*' combined with 'burden', 'caregiver burden', 'perceived burden', or 'caregiver strain'. The search was limited to articles written in English and published in academic journals between 2000 and March 2022. EndNote was used to manage the references and identify duplicates. RESULTS: Twenty-four studies were included. Care recipient-related predictors of caregiver burden included more severe injuries, functional disabilities (including decreased physical and neuropsychological functioning), and worse mental health. Caregiver-related predictors included more time spent caregiving, worse mental health, and unmet needs. For several predictor variables, evidence was mixed or vague. CONCLUSION: The results highlight which caregivers are at risk of caregiver burden and point to several areas of potential intervention to prevent caregiver burden. Future research should explore the relationship between characteristics of the caregiver and caregiver burden, including coping style, problem-solving techniques, and personality, as these have been sparsely investigated and are potentially modifiable through intervention. Further research is needed to elucidate if burden can be prevented by interventions targeting caregivers at risk. Addressing these gaps may clarify the link between caregiver burden and predictor variables and assist in development of interventions that may prevent burden.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Lesiones Encefálicas , Humanos , Cuidadores/psicología , Adaptación Psicológica , Salud Mental , Encéfalo
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