Deficiencias funcionales en pacientes con lesiones de la médula espinal y la salud mental del cuidador: Un estudio exploratorio en una muestra colombiana

Limited literature has examined the connections between caregiver mental health and the physical and psychosocial functioning of individuals with spinal cord injury (SCI) in Latin America, despite the dearth of services and unique needs of this population. The purpose of the current study was to examine the relationships between caregiver mental health (anxiety, burden, depression, satisfaction with life, and self-esteem) and SCI physical and psychosocial functional impairments in a Colombian sample. Forty SCI caregivers were recruited from Neiva, Colombia and completed measures of SCI impairments and their own mental health. Greater SCI impairments, and caregiver stress due to those impairments, were associated with higher caregiver depression and anxiety, although only patient psychosocial functional impairments and related caregiver stress were uniquely associated with caregiver depression. Due to the collectivist nature of and the importance of family in many Latino cultures, mental health interventions for family members who provide care for an individual with SCI having greater psychosocial impairments may be particularly important.Poca literatura ha examinado las relaciones entre salud mental del cuidador y funcionamiento físico y psicosocial de las personas con traumatismo de médula espinal en América Latina, a pesar de la escasez de servicios y necesidades únicas de esta población. El propósito del presente estudio fue examinar las relaciones entre la salud mental del cuidador (ansiedad, sobrecarga, depresión,  satisfacción con la vida y autoestima) y las discapacidades físicas y psicosociales de personas con traumatismo de médula espinal en una muestra colombiana. Cuarenta cuidadores de personas con traumatismo de médula espinal fueron reclutados en Neiva, Colombia, quienes completaron medidas de discapacidad del traumatismo de medula espinal y de su propia salud mental. Mayores niveles de discapacidad en personas con traumatismo de medula espinal y niveles de estrés del cuidador debido a esas discapacidades, fueron asociadas con mayores niveles de depresión y ansiedad en el cuidador, aunque sólo las discapacidades psicosociales de los pacientes y el estrés relacionado con el cuidador fueron asociados con la depresión en el cuidador. Debido a la naturaleza colectivista y la importancia de la familia en la mayoría de las culturas latinas, las intervenciones centradas en la salud mental de los familiares que cuidan de personas con traumatismo de la medula espinal pueden ser particularmente importantes

FAMILY NEEDS, CAREGIVER BURDEN, AND MENTAL HEALTH: CAREGIVERS OF INDIVIDUALS WITH VARIOUS NEUROLOGICAL CONDITIONS FROM COLOMBIA AND MEXICO

This cross-sectional study examined differences in family needs (informational, social, financial, health, and household support), caregiver mental health (depression, satisfaction with life, vitality, social functioning, and emotional role limitations), and caregiver burden (personal life, guilt, and psychological) among caregivers of individuals with traumatic brain injury, spinal cord injury, multiple sclerosis, and dementia from cities in Colombia and Mexico (N = 343). The study also examined the connections among family needs, caregiver mental health, and caregiver burden in the combined sample of caregivers of individuals with neurological conditions. Many significant differences were identified among groups, and implications are discussed. Family needs, caregiver mental health, and burden were all robustly associated with each other, with financial and social support needs, depression, and burden-personal life and guilt emerging as particularly important. Clinicians should focus on helping caregivers meet financial and social support needs in order to positively influence caregiver burden and mental health

Psychological Functioning in Children and Adolescents living with Spinal Cord Lesions and their Caregivers in Colombia, South America

Objective: Spinal cord lesions resulting from spinal cord injury (SCI) and spina bifida (SB) are permanent and cause significant functional impairment. High rates of impaired psychological function and lower health-related quality of life (HRQOL) have been documented in children with SB and their caregivers, but few studies have examined these issues in the pediatric SCI population. Moreover, no research has investigated mental health or HRQOL among children living with spinal cord lesions, or their caregivers, in the developing world. There is reason to suspect that lack of access to medical, rehabilitative, and psychological resources places these individuals at particular risk for compromised psychological functioning. Therefore, the goals of the present study are: 1) to compare psychological functioning and HRQOL of children with SCI or SB to an age-matched comparison group; 2) to compare the psychological functioning, HRQOL, and level of burden in caregivers of children with SCI /SB to that of caregivers of healthy age-matched children; and, 3) to determine the influence of hopefulness on anxious and depressive symptomatology and HRQOL in children with SCI or SB. Participants: Thirty children with spinal cord lesions; 30 age-matched comparison group children; 30 caregivers of children with spinal cord lesions, and 30 caregivers of comparison group children. Methods: Children and caregivers completed a series of questionnaires assessing depressive and anxious symptomatology and HRQOL. Children also completed a questionnaire assessing hopefulness, and caregivers completed a questionnaire assessing levels of burden. Results: Contrary to hypotheses, significant between-group differences were not observed in terms of depressive and anxious symptoms in either children or their caregivers. However, significant differences in HRQOL were observed between children with spinal cord lesions and the comparison group. Finally, results revealed significant differences between caregiver groups on measures of HRQOL and burden. Conclusions: Results therefore highlight the need service delivery in Colombia to children with spinal cord lesions and their caregivers. Access to improved medical, rehabilitative, and psychological care could profoundly impact quality of life in the spinal cord lesion child and caregiver population, particularly with regard to respite services and resources to improve children's ability to attend school and participate in the community. In addition, parents of Colombian children with permanent physical disabilities may not expect their children to achieve normative levels of participation as compared to their healthy peers; psychoeducation would likely assist parents to understand that their children can live full lives despite their different abilities.Ph.D., Psychology -- Drexel University, 201

Sobrecarga do cuidado e impacto na qualidade de vida relacionada à saúde de cuidadores de indivíduos com lesão medular

OBJECTIVE: to analyze the impact and burden of care on the Health-Related Quality of Life (HRQOL) of caregivers of individuals with a spinal cord injury (SCI). METHOD: cross-sectional observational study carried out by reviewing medical records and applying questionnaires. The scale Short Form 36 (SF-36) was used to assess HRQOL and the Caregiver Burden Scale (CBScale) for care burden. Results were analyzed quantitatively. Most patients with SCIs were male, aged 35.4 years old on average, with a predominance of thoracic injuries followed by cervical injuries. Most caregivers were female aged 44.8 years old on average. RESULTS: tetraplegia and secondary complications stand out among the clinical characteristics that contributed to greater care burden and worse HRQOL. Association between care burden with HRQOL revealed that the greater the burden the worse the HRQOL. CONCLUSION: Preventing care burden through strategies that prepare patients for hospital discharge, integrating the support network, and enabling access to health care services are interventions that could minimize the effects arising from care burden and contribute to improving HRQOL.OBJETIVO: análisis del sobrecarga del cuidado e impacto en la Calidad de Vida Relacionada a la Salud (CVRS), de los cuidadores de individuos con lesión medular traumática (LME). MÉTODO: estudio observacional, de corte transversal, realizado por revisión de prontuarios y aplicación de cuestionarios. Fueron utilizadas las escalas de Short Form 36 (SF-36) para evaluar la CVRS, Caregiver Burden Scale (CBScale) para Sobrecarga del cuidado y los resultados fueron analizados cuantitativamente. La mayoría de los individuos con LM era del sexo masculino, con media de edad de 35,4 años, con predominio de lesión torácica seguida de lesión cervical. La mayoría de los cuidadores era del sexo femenino, con media de edad de 44,8 años. RESULTADO: de las características clínicas que aportaron para mayor sobrecarga del cuidado y peor CVRS se destacaron individuos cuadripléjicos y con complicaciones secundarias. Al asociar la sobrecarga del cuidado con la CVRS se logró que cuanto mayor la sobrecarga peor a CVRS. CONCLUSIÓN: precaver la sobrecarga del cuidado por medio de estrategias de adorno para alta, integración de la red de apoyo y acceso a servicios de salud, podrían minimizar los efectos de la sobrecarga del cuidado y aportar para una mejor CVRS.OBJETIVO: analisar a sobrecarga do cuidado e impacto na Qualidade de Vida Relacionada à Saúde (QVRS) dos cuidadores de indivíduos com lesão medular traumática (LMT). MÉTODO: este é um estudo observacional, de corte transversal, realizado por revisão de prontuários e aplicação de questionários. Foram utilizadas as escalas Short Form 36 (SF-36) para avaliar a QVRS, Caregiver Burden Scale (CBScale) para sobrecarga do cuidado, e os resultados foram analisados quantitativamente. A maioria dos indivíduos com LMT era do sexo masculino, com média de idade de 35,4 anos, com predomínio de lesão torácica, seguida de lesão cervical. A maioria dos cuidadores era do sexo feminino, com média de idade de 44,8 anos. RESULTADO: das características clínicas que contribuíram para maior sobrecarga do cuidado e pior QVRS destacaram-se indivíduos com tetraplegia e com complicações secundárias. Ao associar a sobrecarga do cuidado com a QVRS, obteve-se que quanto maior a sobrecarga pior a QVRS. CONCLUSÃO: prevenir a sobrecarga do cuidado por meio de estratégias de preparo para alta, integração da rede de apoio e acesso a serviços de saúde, poderia minimizar os efeitos da sobrecarga do cuidado e contribuir para melhor QVRS

Feelings of burden among family caregivers of people with spinal cord injury in Turkey

Study design: The study was designed as a cross-sectional survey. Objectives: The purpose of the study was to examine the level of feelings of burden in family caregivers of people with spinal cord injury (SCI) in Turkey, and to explore its predictors. Setting: Turkey. Methods: One hundred family caregivers of people with SCI completed measures of burden of caregiving, depression, social support and physical health. The SCI participants completed a measure of functional independence. Multivariate statistics and structural equation modeling (SEM) were conducted to identify significant predictors of caregiver burden. Results: Caregiver burden was significantly related to caregivers’ feelings of depression. SEM analysis showed that social support from family and from friends predicted caregiver burden via depression. Caregivers’ age, sex, educational level, physical health and household income did not significantly predict their feelings of depression or burden. Conclusions: Our findings revealed that support received from both families and friends is an important source for alleviating the depressive feelings of caregivers and, in return, their burden in the caregiving. In Turkey, high support from family members is expected and is important for psychological well-being, yet the current study showed that the support received from friends also has unique contribution to the well-being of the caregivers of persons with SCI. Overall, our findings highlight the importance of supportive relationships between family as well as friends for the caregivers who may have to provide lifetime care for their family member with special needs.WOS:000407265700012Scopus - Affiliation ID: 60105072PMID: 28169295Science Citation Index Expanded - Social Sciences Citation IndexQ2 - Q3ArticleUluslararası işbirliği ile yapılan - EVETAğustos2017YÖK - 2016-1

Correlation Between Health-Related Quality of Life in Veterans With Chronic Spinal Cord Injury and Their Caregiving Spouses

Background: Recently, investigations have indicated that caring of a chronically ill family member strongly influences the health status and the quality of life (QOL) of the caregiving family members. Objectives: The purpose of this study was to examine the relationship between health-related QOL of veterans with chronic spinal cord injury and their caregiving spouses. Patients and Methods: We designed a cross-sectional study including two groups; veterans with chronic spinal cord injury and their caregiving wives who were living in the city of Mashhad, Iran. The patients with spinal cord injury were veterans from the Iran-Iraq war (1980-1988). All the participants filled out the short form 36 (SF-36) health survey questionnaire. A Pearson correlation coefficient was calculated for the scales of the two groups. Results: The mean age and standard deviation of veterans and their spouses were 48.5 ± 5.9 and 44.8 ± 7.2, respectively and their number of children ranged between 0-6. Our data analysis showed that there was a significant difference between the two groups in some domains of the SF-36, including PF, MH, PCS, MCS, BP and GH (P < 0.05), but there was no significant difference in RP, VT, SF and RE between the two groups. Conclusions: The results indicate that a decrease in health status level of veterans, physically and mentally, can affect the health-related QOL of their caregiving spouses

PREDICTORS OF HEALTH-RELATED QUALITY OF LIFE AMONG YOUTH WITH SPINAL CORD INJURY

Understanding the different dimensions of psychosocial HRQOL for youth with spinal cord injury (SCI) is still a developing research focus in medical and disability studies. Pediatric-onset SCI is relatively rare. Family Stress Theory’s Adaptation Phase accounts for how a stressor can impact all family members (McCubbin and Patterson, 1993). This study aimed to look at new factors, including cognitive approaches to challenges, physical health indicators (i.e., incontinence), caregiver mental health problems (i.e., anxiety and depression), and general family dysfunction that may impact psychosocial HRQOL for youth (ages 6-18) with SCI, in terms of the perspectives of both the youth and the primary caregiver (n =158). This dissertation study used several linear regressions to determine each variable’s impact on each reporter’s psychosocial HRQOL. Negative Problem Orientation was significant in both caregiver proxy report and youth-report psychosocial HRQOL. Negative Problem Orientation and fecal incontinence were found to significantly impact psychosocial HRQOL. For the caregiver proxy-report psychosocial HRQOL, caregiver depression was found to be the most predictive. The findings of this study suggest that more research is needed to determine which variables impact both caregiver and youth-report psychosocial HRQOL for youth with SCI. Additionally, problem-solving and mental health interventions, as well as interventions/education about reducing incontinence may improve psychosocial HRQOL for youth with SCI

Measures used to assess impact of providing care among informal caregivers of persons with stroke, spinal cord injury, or amputation:a systematic review

Purpose: (1) To identify measures used to evaluate the impact of caregiving among caregivers of persons with stroke, spinal cord injury, and amputation; and (2) to systematically evaluate their clinimetric properties reported in validation studies. Materials and methods: Two separate systematic reviews (Embase, PsycINFO, CINAHL, Pubmed/Medline) were conducted. COSMIN guidelines were used to assess clinimetric properties and methodological quality of studies. Results: (1) 154 studies published between 2008 and May 2019 were included, in which 48 measures were used, mostly describing negative impact. Thirty measures were used only once and not further described. (2) In general, structural validity, internal consistency, and hypothesis testing were often investigated. Reliability, cross-cultural and criterion validity to a lesser extent, and scale development and content validity were rarely described. Tests of measurement error and responsiveness were exceptional. Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire. Conclusions: There is a wide variety of impact of caregiving measures. The present study provided a detailed overview of what is known about clinimetric characteristics of 18 different measures repeatedly used in research. The overview provides clinicians a guidance of appropriate measure selection. PROSPERO registration: CRD4201809479

Cuidadores familiares: o que eles necessitam? Uma revisão integrativa

OBJETIVO Este estudio tuvo como objetivo identificar cuáles son las principales necesidades manifiestas por el cuidador familiar en el cuidado a la persona dependiente. MÉTODO Se llevó a cabo una revisión integrativa de la literatura en el período entre 2010 y 2015 con el recurso de instrumentos de búsqueda específicos, en las bases de datos EBSCO y SCOPUS. RESULTADOS Fueron seleccionados 11 artículos. El análisis de la evidencia científica permitió organizar los resultados en cinco áreas temáticas: la transición al cuidar, el ser responsable de todo, la importancia del soporte, el acceso a los apoyos formales, la comunicación y la información en la toma de decisión. CONCLUSIÓN Los resultados demuestran que el cuidador presenta innumerables necesidades en áreas distintas, las que se deben abordar en las intervenciones de enfermería.OBJETIVO Este estudo teve como objetivo identificar quais as principais necessidades manifestadas pelo cuidador familiar no cuidado à pessoa dependente. MÉTODO Realizou-se uma revisão integrativa da literatura no período entre 2010 e 2015 com o recurso de instrumentos de busca específicos, nas bases de dados EBSCO e SCOPUS. RESULTADOS Foram selecionados 11 artigos A análise da evidência científica obtida permitiu organizar os resultados em cinco áreas temáticas: a transição para o cuidar, o ser responsável por tudo, a importância do suporte, o acesso aos apoios formais, a comunicação e a informação na tomada de decisão. CONCLUSÃO Os resultados demonstram que o cuidador apresenta inúmeras necessidades em áreas distintas,as quais devem ser abordadasnas intervenções de enfermagem.OBJECTIVE Aimed to identify the main needs expressed by family caregivers in caring for adependent person. METHOD An integrative review of the literature in the period between 2010 and 2015 using specific search engine tools in the EBSCO and SCOPUSdatabases. RESULTS 11 articles were selected, and the analysis of the scientific evidence obtained allowed for organizing the results into five thematic areas:transition into care, being responsible for everything, the importance of support, access to formal support, communication and informationprocesses. CONCLUSION The results showed that caregivers have many needs in different areas, which should be addressed in nursing interventions

Auswirkungen einer Rückenmarksverletzung eines erwachsenen Familienmitglieds auf die Angehörigen : Eine systematische Literaturrecherche

Ausgangslage: Eine Rückenmarksverletzung ist ein komplexes Ereignis, dass sich nicht nur auf die Betroffenen auswirkt. Pflegende Angehörige werden unterwartet und plötzlich mit ihrer neuen Rolle und Funktion konfrontiert. Die Pflege einer geliebten Person kann eine schwere Bürde sein und eine verminderte Lebensqualität zur Folge haben. Noch immer besteht ein Mangel an Forschung, die sich mit den Auswirkungen einer Rückenmarksverletzung auf die Angehörigen beschäftigt. Zielsetzung: Das Ziel dieser Arbeit ist es zu verstehen, welche Auswirkungen eine Rückenmarksverletzung eines erwachsenen Familienmitgliedes auf die Angehörigen hat. Anhand bestehender Literatur werden die wichtigsten Outcomes aufgezeigt. Methode: Eine systematische Literaturrecherche wurde in den Datenbanken CINAHL, Cochrane Library, PubMed und Psycinfo durchgeführt. Durch die kritische Auseinandersetzung mit der verwendeten quantitativen Literatur konnten wichtige Outcomes benannt werden.Resultate: Anhand der 13 ausgewählten Studien konnten fünf Überthemen identifiziert werden. Es hat sich gezeigt, dass pflegenden Angehörigen eine signifikante schwere Bürde tragen und ihre Lebensqualität, gesundheitsbezogene Lebensqualität, körperliche und mentale Gesundheit und Zufriedenheit mit dem eigenen Leben unter ihrer pflegerischen Rolle leidet. Schlussfolgerung: Die Auswirkungen auf die Angehörigen sind enorm. Deshalb sollten besonders Pflegefachpersonen die Angehörigen von Anfang an in den Genesungsprozess des Betroffenen miteinbeziehen