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Resumo O cuidador informal presta cuidados permanentes ou regulares a pessoas idosas em situação de dependência, sem remuneração. Objetivou-se identificar as percepções de cuidadores informais sobre motivações, necessidades e benefícios do cuidado ao idoso dependente. Estudo qualitativo realizado com 10 cuidadoras informais portuguesas, a partir de um instrumento com questões sobre o cuidado prestado ao idoso e suas percepções sobre o exercício dessa função. Os resultados revelaram como motivações para o cuidado: relação de proximidade e confiança, dever de cuidar, familiar mais disponível, proximidade da residência, inexistência de vagas e elevado custo das instituições de acolhimento e desejo do idoso permanecer na sua habitação. Os principais cuidados aos idosos são: hidratação, higiene, alimentação, administração terapêutica, companhia, apoio emocional, conforto, entretenimento, promoção da autonomia e dignidade. As necessidades identificadas pelas cuidadoras foram: apoio domiciliário, da segurança social e da entidade empregadora do cuidador, ajuda financeira, suporte psicológico e capacitação para cuidar do idoso. Os benefícios do cuidado informal para o idoso dependente apontados foram: celeridade do apoio familiar, segurança física e emocional, afeto e companheirismo. Este estudo dá voz a cidadãos cruciais.
Abstract The informal caregiver provides non-remunerated permanent or regular care to dependent older adults. This qualitative study aimed to identify the perceptions of informal caregivers about motivations, needs, and benefits of caring for dependent older adults. It was conducted with ten Portuguese informal caregivers, based on an instrument with questions about the care provided to older adults and their perceptions about performing this role. The results revealed the following motivations for care: proximity and trust relationship, duty of care, more available family members, home proximity, lack of vacancies, high cost of shelter institutions, and older adults' desire to remain in their homes. The primary care activities for older adults are hydration, hygiene, food, therapeutic administration, companionship, emotional support, comfort, entertainment, and promoting autonomy and dignity. The needs identified by the caregivers were home, social security, and the caregiver's employer support, financial help, psychological support, and training to care for the older adults. The benefits of informal care for dependent older adults were prompt family support, physical and emotional security, affection, and companionship. This study gives voice to crucial citizens.
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OBJECTIVES: This study aimed to evaluate the association between the sociodemographic characteristics of caregivers and patients with stroke, clinical data on stroke, and disability with caregiver burden, hopelessness, and anxiety. MATERIALS AND METHODS: This cross-sectional study included patients with stroke of either sex, aged >18 years. Data were collected between January 2020 and July 2021. Patient demographic included age, sex, stroke type, severity, etiology, topography, treatment, and stroke recurrence. Stroke disability was assessed using the modified Rankin Scale and Barthel Index at 90 days post-discharge. Additionally, caregiver burden, hopelessness, and anxiety were evaluated during patient consultations using the Zarit Burden Interview (ZBI), Beck Hopelessness Scale (BHS), and Beck Anxiety Inventory (BAI). RESULTS: We included 104 patients with stroke and their caregivers. Overall caregiver burden was moderate (ZBI: 24 [25]), with mild hopelessness (BHS: 4 [4]) and minimal to mild anxiety (BAI: 8 [13]). The linear regression model presented in Table 3 showed that female caregivers scored up to 11 points higher on the Zarit Burden Interview (p = 0.011). Additionally, increased patient age was associated with a higher caregiver burden (p = 0.002) on the Zarit Burden Interview. Posterior circulation stroke and total anterior circulation stroke were also associated with higher Zarit Burden Interview scores compared to lacunar stroke (p = 0.017). Age was not associated with caregiver burden in the entire sample. However, an association between age and caregiver burden was found only in the female group. Furthermore, women aged 65 years and older experienced a more severe burden than women aged 18 to 64 years (p<0.001). Stroke disability was not associated with caregiver burden. CONCLUSIONS: Older female caregivers were significantly affected when caring for stroke patients. Total anterior circulation stroke and Posterior circulation stroke increased Zarit Burden Interview scores. However, no association was observed between stroke disability and the caregiver burden.
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Ansiedade , Sobrecarga do Cuidador , Cuidadores , Avaliação da Deficiência , Acidente Vascular Cerebral , Humanos , Feminino , Masculino , Estudos Transversais , Pessoa de Meia-Idade , Ansiedade/diagnóstico , Ansiedade/psicologia , Ansiedade/epidemiologia , Ansiedade/etiologia , Acidente Vascular Cerebral/psicologia , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/terapia , Idoso , Sobrecarga do Cuidador/psicologia , Sobrecarga do Cuidador/diagnóstico , Cuidadores/psicologia , Adulto , Fatores Etários , Esperança , Fatores Sexuais , Fatores Sociodemográficos , Efeitos Psicossociais da Doença , Estado Funcional , Fatores de Risco , Idoso de 80 Anos ou maisRESUMO
Introduction. The WPAI-UC/CD-Caregiver questionnaires assess the impact of ulcerative colitis (UC) or Crohn's disease (CD) on parents'/caregivers' work life and daily activities. Our objective was to adapt and validate these questionnaires in the Spanish population. Methods. A translation and back-translation were done. The document was assessed by an expert committee and a pilot group of families of patients with pediatric inflammatory bowel disease (p-IBD). For validation, the parents/caregivers of patients with p-IBD (10-18 years old) were recruited. The expert committee and the pilot group conducted a subjective assessment of the format and time necessary to complete the questionnaires. Cronbach's alpha coefficient was estimated and a factor analysis with varimax rotation was done. Kaiser- Meyer-Olkin (KMO) coefficients and Bartlett's sphericity test were estimated to test the adequacy of the factor analysis. Results. A total of 370 patients (median age: 14.1 years) and 263 parents/caregivers of patients with UC or unclassified IBD and 261 parents/caregivers of patients with CD were included. The KMO coefficients (0.6947 and 0.7179) and Bartlett's sphericity test (p < 0.001) confirmed the adequacy of the factor analysis. The 6 items targeted the same domain. The factor model accounted for 99.99% and 94.68% of variance, and Cronbach's alpha coefficients (0.6581 and 0.6968) showed an adequate consistency. The format and the median time of 2 minutes to complete the questionnaires were considered optimal. Conclusions. The versions of the WPAI-Caregiver questionnaires validated in the Spanish population may be used in families whose children have IBD.
Introducción. Los cuestionarios WPAI-UC/CD-Caregiver evalúan la repercusión laboral y en actividades cotidianas de los padres/cuidadores de pacientes con colitis ulcerosa (CU) o enfermedad de Crohn (EC). El objetivo fue adaptar y validar estos cuestionarios en la población española. Métodos. Se realizó la traducción y la retrotraducción. El documento fue evaluado por un comité de expertos y por un grupo piloto de familias de pacientes con enfermedad inflamatoria intestinal pediátrica (EII-p). Para la validación, se reclutaron padres/cuidadores de pacientes con EII-p (10-18 años). El comité de expertos y el grupo piloto evaluaron subjetivamente el formato y el tiempo necesario para completar los cuestionarios. Se calculó el coeficiente alfa de Cronbach y se realizó el análisis factorial con rotación Varimax. Se calcularon los coeficientes de Kaiser-Meyer-Olkin (KMO) y la prueba de esfericidad de Bartlett para comprobar la adecuación del análisis factorial. Resultados. Se incluyeron 370 pacientes (mediana 14,1 años), y 263 padres/cuidadores de pacientes con colitis ulcerosa o EII no clasificada y 261 padres/cuidadores de pacientes con enfermedad de Crohn. Los coeficientes KMO (0,6947 y 0,7179) y la prueba de esfericidad de Barttlet (p <0,001) confirmaron la adecuación del análisis factorial. Los 6 ítems se dirigieron a la misma dimensión. El modelo factorial explicó el 99,99 % y el 94,68 % de la varianza, y los alfa de Cronbach (0,6581 y 0,6968) indicaron buena consistencia. El formato y la mediana de 2 minutos para completarlos se consideraron óptimos. Conclusiones. Las versiones validadas en la población española de los cuestionarios WPAI-Caregiver pueden considerarse para su uso en familias con hijos con EII.
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Cuidadores , Colite Ulcerativa , Humanos , Espanha , Criança , Cuidadores/psicologia , Adolescente , Feminino , Masculino , Doença de Crohn , Eficiência , Traduções , Inquéritos e Questionários , Doenças Inflamatórias Intestinais , Características Culturais , Pais/psicologia , Atividades CotidianasRESUMO
Introducción: el envejecimiento poblacional, junto al aumento de enfermedades crónicas no transmisibles han llevado a un incremento en la prevalencia de las personas en situación de dependencia severa, requiriendo que familiares, amigos o vecinos asuman roles de cuidadores. Este estudio se enfoca en identificar a la población de cuidadores de personas con dependencia severa y facilitar su adherencia en programas de capacitación para en un Centro de Salud Familiar (CESFAM) en Puente Alto, Santiago de Chile. Métodos: se detectaron 82 cuidadores de pacientes con dependencia severa, de los cuales 47 seguían siendo cuidadores activos. Se encuestó telefónicamente a 35 cuidadores de pacientes con dependencia severa. Se recopiló información sobre acceso a internet, tiempo disponible y conocimiento sobre la disponibilidad de capacitaciones. Además, se evaluó el nivel de sobrecarga en los cuidadores utilizando la escala de Zarit abreviada (EZA). Resultados: el 83% de los cuidadores encuestados tenía acceso a internet, aunque se identificaron barreras como la falta de tiempo y conocimiento sobre las capacitaciones disponibles. Se encontró que el 62,8% de los cuidadores experimentaba sobrecarga severa. Estos resultados sugieren la falta de mecanismos para el cuidado de pacientes dependientes y la necesidad de facilitar la participación en programas de capacitación. Conclusiones: el estudio ofrece una breve representación sobre los cuidadores de personas con dependencia severa en un contexto de atención primaria. Se concluye que se requieren intervenciones multidisciplinarias para acercar instancias de capacitación y optimizar el cuidado del cuidador. Como parte de estas intervenciones, se desarrolló un manual del cuidador que servirá como recurso para el equipo de salud del CESFAM Madre Teresa de Calcuta, con el fin de brindar apoyo efectivo a los cuidadores.
Introduction: Population aging and the increase in non-communicable chronic diseases have led to a rise in severe dependency, requiring that family members, friends, or neighbors take on caregiving roles. This study focuses on improving participation in training programs for caregivers of individuals with severe dependency at a Family Health Center (CESFAM) in Puente Alto, Santiago, Chile. Methods: To characterize this population and determine barriers to accessing distance training, 35 caregivers of patients with severe dependency were contacted by phone. All the information was gathered on internet access, available time, and awareness of training availability. Additionally, caregiver burden levels were evaluated using de abbreviated Zarit scale (EZA). Results: 83% of surveyed caregivers had internet access, although barriers such as lack of time and knowledge about available training were identified, and 62.8% of caregivers experienced severe burdens. These results highlight the need for interventions to facilitate participation in training programs and improve the care provided by caregivers. Conclusions: The study provides a specific insight into caregivers of individuals with severe dependency in a primary care context. Multidisciplinary interventions are required to bring training opportunities closer and optimize caregiver support. As part of these interventions, a caregiver manual was created to serve as a resource for the CESFAM Madre Teresa de Calcuta health team, aiming to provide adequate support to caregivers.
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The world's population is experiencing an aging process, which is resulting in an increase in diseases such as Alzheimer's disease. Consequently, more and more people need care, which can lead to overload and harm to their family's quality of life. Objective: Identify the psychosocial factors affected by the burden on family caregivers of people with Alzheimer's disease. Methods: Forty-nine family caregivers of people with Alzheimer's disease, from a city in Minas Gerais, Brazil, participated in the study. They filled out a form of sociodemographic variables, and answered the Burden Interview Scale (BI-Zarit), Quality of Life in Alzheimer's Disease Caregiver version (CQoL-AD), the Depression, Anxiety and Stress Scale (DASS-21), the Mindfulness and Awareness Scale (MAAS) and the Clinical Dementia Rating Scale (CDR). Results: All participants were female with an average age of 54.26 (±8.99). Daughters comprised 77.55% of the sample, and 34.69% were sole caregivers. The Bi-Zarit scale positively and significantly correlated with DASS-21 Depression (r=0.440; p=0.002), DASS-21 Anxiety (r=0.415; p=0.003), DAAS-21 Stress (r=0.583; p<0.001). On the other hand, it showed a negative correlation with MAAS (r=-0.429; p=0.002) and CQoL-AD (r=-0.533; p<0.001). Conclusion: This study demonstrates that family caregivers of people with Alzheimer's disease may be overloaded, and that the heavier the burden, the lower level of attention, the worse quality of life and the greater the possibility for the caretaker to present symptoms of depression, anxiety, and stress.
A população mundial vive um processo de envelhecimento que está resultando no aumento de doenças, como a doença de Alzheimer. Consequentemente, cada vez mais pessoas necessitam de cuidados, o que pode gerar sobrecarga e prejuízos à qualidade de vida de seus familiares. Objetivo: Identificar os fatores psicossociais afetados pela sobrecarga em cuidadores familiares de pessoas com doença de Alzheimer. Métodos: Participaram do estudo 49 cuidadores familiares de pessoas com doença de Alzheimer, de um município de Minas Gerais, Brasil. Os participantes preencheram um formulário de variáveis sociodemográficas e responderam à escala de Sobrecarga (BI-Zarit), à escala de Qualidade de Vida na Doença de Alzheimer versão Cuidador (CQdV-DA), à escala de Depressão, Ansiedade e Estresse (DASS-21), à escala de Atenção Plena e Consciência (MAAS) e à escala de Avaliação Clínica de Demência (CDR). Resultados: Todos os participantes eram do sexo feminino, com idade média de 54,26 (±8,99). As filhas representaram 77,55% da amostra e 34,69% eram cuidadoras exclusivas. A escala Bi-Zarit correlacionou-se positiva e significativamente com a DASS-21 Depressão (r=0,440; p=0,002), DASS-21 Ansiedade (r=0,415; p=0,003), DAAS-21 Estresse (r=0,583; p<0,001). Por outro lado, mostrou correlação negativa com MAAS (r=-0,429; p=0,002) e CQoL-AD (r=-0,533; p<0,001). Conclusão: Este estudo demonstra que os cuidadores familiares de pessoas com doença de Alzheimer podem estar sobrecarregados e que, quanto maior a sobrecarga, menor o nível de atenção, pior a qualidade de vida e maior a possibilidade de apresentar sintomas de depressão, ansiedade, estresse.
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BACKGROUND: The longevity of the world population can contribute to an increase in hospitalizations and, consequently, to the emergence of functional limitations, resulting in the need for family caregivers. Hospitalized older adults may become dependent and require more care, increasing the burden on family caregivers. Thus, the nursing team in the hospital environment faces a new situation: an increase in the number of older adults occupying hospital beds and the presence of their family caregivers. OBJECTIVE: We aimed to analyze the association between the demographic variables of interest and the self-rated health of family caregivers and to describe the functionality of older adults hospitalized in a university hospital in the Amazonian context. METHODS: This cross-sectional, quantitative, exploratory, and descriptive study was carried out through individual interviews with 98 interviewees, divided into 49 family caregivers and 49 older adults hospitalized in the surgical clinic sector of a university hospital in Brazil between February and March 2023. Demographic data and health conditions were collected from family caregivers, and to describe the functionality of hospitalized older adults, the Barthel Index was applied. Descriptive (frequency and percentage) and inferential analyses were used, and the student t test was applied. The significance level of 5% was adopted. RESULTS: Among the 49 family caregivers, the majority were women (n=40, 81.6%) with an average age of 46.9 (SD 13.3) years. Most were single (n=28, 57.1%) and had completed an average level of education (n=26, 53.1%). Additionally, 25 (51%) caregivers were caring for their parents. Regarding health conditions, respondents self-assessed their health as good (25/49, 51%; P=.01), and they considered that their health status was not affected by the provision of care (36/49, 73.5%; P=.01). There was a significant association between demographic variables (ie, gender, age, and education) and self-assessment of family caregivers (P=.01, P=.01, and P=.04, respectively). Of the 49 older adults hospitalized, the majority (n=31, 63.2%) were men, with a mean age of 69.2 (SD 7.12) years. Regarding the assessment of functionality, most older adults were classified as having mild dependence on care (n=23, 46.9%), specifically in the age group between 60 and 69 years (21/49, 67.8%). CONCLUSIONS: The data revealed that female gender, age, and education of family caregivers contributed favorably to the provision of care to hospitalized older adults with a lower degree of functional dependence. It is important to emphasize that during the older adult's hospitalization, the family caregiver should not be seen as a delegation of responsibilities or as a complement of human resources to assist in their recovery. Health professionals need to implement assertive interventions so that the family caregiver functions as a therapeutic resource.
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Identifying a future occupation is an important achievement during adolescence, a process particularly complex for Peruvian adolescents. Perú is a postcolonial country with many forms of inequality, and one of them is the opportunity gap to attend a college. However, most adolescents aspire to go to university as a way out of poverty, and, since Perú is a collectivist society, this is a family task: it is adolescents' responsibility to go to college in order to give a better life to their families. Theories developed for WEIRD societies (Western, Educated, Industrialized, Rich and Democratic) do not provide an accurate explanation of Peruvian adolescents' occupational projects because they envision a person with autonomy and resources to choose a career. Thus, our goal is to analyze adolescents' occupational plans considering the role adolescent-caregivers relationships play in this configuration. This study is part of the project "Being an adolescent in Perú" (PUCP-UNICEF) which characterized Peruvian adolescence by studying 14 variables through a qualitative study with 66 participants. In depth interviews were conducted and the data was analyzed using thematic analysis. Results of the thematic analysis are organized in three topics that explain the relationship between occupational plans and adolescent-caregiver relationship (1) adolescents have occupational aspirations rather than achievable projects that are that are built alone, without adult support; (2) attending college as an occupational aspiration belongs to the family, not to the individual operating also a kind of "debt" to pay to their caregivers for being financially supported to be able to study in high school; and (3) caregivers do not have the possibility or resources of being able to accompany their adolescent's occupational plans. We conclude that Peruvian adolescents think about their future within the framework of their family's needs, rather than linked to personal and occupational goals, impeding adolescents from exploring and selecting a realistic occupational goal consistent with their interests. The results allow us to discuss the relevance of studying adolescent development taking into account the particularities of the adolescents' cultural and socioeconomic contexts as well as the core role that relationship with caregivers plays in this process in Perú.
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Escolha da Profissão , Humanos , Adolescente , Peru , Masculino , Feminino , Universidades , Pesquisa Qualitativa , Adulto Jovem , Família/psicologiaRESUMO
INTRODUCTION: People caring for patients with dementia are prone to suffering from burden. Behavioral and psychological symptoms of dementia (BPSD) may have an impact on caregiver burden. In Latin American countries, there is a lack of research on caregiver burden. We aimed to determine which BPSD have the greatest impact on caregiver burden among Peruvian patients with dementia and to compare the effects of BPSD on caregiver burden across different types of dementia. METHODS: A cross-sectional study was conducted on 231 patients living with Alzheimer's dementia (AD), behavioral variant frontotemporal dementia (bvFTD), dementia with Lewy bodies (DLB), and vascular dementia (VD) and their caregivers who attended a Peruvian memory clinic. BPSD were assessed with the Neuropsychiatric Inventory (NPI). Caregiver burden was assessed with the Zarit Burden Inventory. We used analysis of variance to compare the AD, bvFTD, DLB, and VD groups. Correlations between Zarit Burden Inventory and NPI subscale scores were assessed with Spearman's correlation. RESULTS: DLB caregivers had significantly higher levels of burden than the other patient groups (p < 0.05) and higher total NPI scores than caregivers for other patient groups (p < 0.05). bvFTD caregivers had significantly higher total NPI scores than AD and VD caregivers (p < 0.05). Hallucinations, aberrant motor behavior, and apathy were the symptoms most significantly correlated with caregiver burden in those caring for DLB, bvFTD, and AD patients, respectively. CONCLUSION: Neuropsychiatric symptoms are higher in DLB caregivers. Hallucinations, aberrant motor behavior, and apathy are the main symptoms correlated with burden.
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Sobrecarga do Cuidador , Cuidadores , Demência , Humanos , Masculino , Feminino , Peru , Estudos Transversais , Idoso , Demência/psicologia , Pessoa de Meia-Idade , Sobrecarga do Cuidador/psicologia , Cuidadores/psicologia , Testes Neuropsicológicos , Doença por Corpos de Lewy/psicologia , Demência Vascular/psicologia , Doença de Alzheimer/psicologia , Demência Frontotemporal/psicologia , Idoso de 80 Anos ou mais , Efeitos Psicossociais da Doença , Sintomas Comportamentais/psicologiaRESUMO
Caregivers of autistic children in low-to-middle-income countries experience many barriers to access resources to support their child's development. Caregiver training is considered an evidence-based practice and may be a cost-effective way to support caregivers of autistic children in such settings. This study focuses on the cultural adaptation of Parents Taking Action (PTA; Magaña et al., Family Process, 56, 57-74, 2017) to support caregivers of autistic children in Paraguay. We conducted focus groups and individual interviews with 28 caregivers, autistic individuals, and professionals in Paraguay to understand caregivers' needs and to explore needed cultural adaptations of PTA to achieve contextual fit. Participants identified caregivers' need for accurate and reliable information, strategies to support children's growth, and emotional support and strategies to manage stress. Additionally, participants provided recommendations for adapting PTA considering the dimensions within the Cultural Adaptation Checklist (Lee et al., International Journal of Developmental Disabilities, 2023). This study is the first step in the iterative process of culturally adapting an intervention and the process described in this study may be appropriate for culturally adapting other interventions.
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Transtorno Autístico , Cuidadores , Grupos Focais , Humanos , Cuidadores/psicologia , Cuidadores/educação , Feminino , Masculino , Adulto , Transtorno Autístico/psicologia , Transtorno Autístico/terapia , Pré-Escolar , Paraguai , Criança , Pais/psicologia , Pais/educação , Pessoa de Meia-Idade , Assistência à Saúde Culturalmente Competente , Pesquisa QualitativaRESUMO
Resumen (analítico) Existe insuficiente evidencia acerca de lo que significa ser cuidador de niños o niñas con parálisis cerebral en Colombia. Nuestra investigación se aborda desde un enfoque hermenéutico, utilizando el método de la teoría fundamentada, con 13 entrevistas semiestructuradas a adultos cuidadores de niños y niñas con parálisis cerebral. Emergen cuatro categorías: amor incondicional, cuidando como mujer, atravesando el duelo e interminable lucha por los derechos del menor. Se concluye que existe una decidida forma de afrontamiento de las cuidadoras, pues están dispuestas a renunciar a sus propias vidas, a sus relaciones personales y sociales, a sufrir un constante duelo, a aprender nuevas formas de cuidar y transformar sus hogares, hasta luchar por la atención digna de sus hijos. El amor sin condiciones les permite reconocerse como mujeres cuidadoras únicas.
Abstract (analytical) There is insufficient evidence regarding meanings developed by caregivers of children with Cerebral Palsy in Colombia. The methodology involved adopting a hermeneutic approach, which was combined with the grounded theory method. A total of 13 semi-structured interviews were conducted with adult caregivers of children with cerebral palsy. Following an analysis of the results, four categories emerged: unconditional love; caring as a woman; experiencing grief; and the endless fight for their child's rights. It was concluded that the caregivers of children with Cerebral Palsy have developed determined coping skills. This is because they are willing to give up their own lives, sacrifice their personal and social relationships, experience constant grief and learn new ways of caring and transforming their homes in their struggle to provide dignified care for their children. Unconditional love allows these caregivers to recognize themselves as unique caring women.
Resumo (analítico) Não há evidências suficientes sobre o que significa ser cuidador de crianças com paralisia cerebral na Colômbia. Pesquisa abordada a partir de uma abordagem hermenêutica, utilizando como método da teoria fundamentada, com 13 entrevistas semiestruturadas com adultos cuidadores de crianças com paralisia cerebral. Emergem quatro categorias: amor incondicional, cuidado como mulher, vivência do luto e luta incessante pelos direitos da criança. Conclui-se que existe uma determinada forma de enfrentamento para os cuidadores, pois estão dispostos a abdicar de sua própria vida, de suas relações pessoais e sociais, a sofrer lutos constantes, a aprender novas formas de cuidar e transformar seus lares, a lutar por cuidado digno de seus filhos. O amor incondicional permite que elas se reconheçam como mulheres únicas e carinhosas.
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Background and Objectives: Little is known about patients' and caregivers' experiences with atopic dermatitis (AD) in Argentina, so a survey was administered to learn more. Materials and Methods: A 53-item anonymous survey was administered in Spanish to adult AD patients (n = 334) and caregivers (n = 339) of pediatric AD patients in Argentina (total n = 673). Demographics, healthcare provider information, financial burden, disease severity, disease burden, level of disease-specific education, and experience with shared physician/patient decision making were collected. Linear and logistic regression models were used for statistical comparisons. Results: Survey respondents were overwhelmingly female (90.8%), as was the overall patient population (72.8%). Patients were seen mostly by healthcare specialists (66.8% dermatologists, 13.5% pediatricians, 7.7% allergists, and 7.2% general practitioners). Only 2.8% of respondents reported no symptoms, while 33.3%, 52.4%, and 11.5% reported mild, moderate, and severe AD disease, respectively. Anxiety/depression and pain/discomfort were the most impactful on respondents' quality of life. Caregivers of children with moderate to severe AD and adult patients with severe AD reported a significant financial burden, including using savings or not purchasing food or other essentials to afford medical care. Few people reported receiving disease-specific education or having their own treatment priorities taken into consideration. For adult patients, receiving disease education and being asked about treatment priorities were associated with higher treatment satisfaction and AD control. Discussion: Mental health, pain/discomfort, and financial worries are the most important burdens for adult AD patients and caregivers of children with AD in Argentina. We recommend prioritizing disease-specific education and shared decision making to improve AD care in Argentina.
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Cuidadores , Efeitos Psicossociais da Doença , Dermatite Atópica , Humanos , Feminino , Dermatite Atópica/psicologia , Dermatite Atópica/terapia , Argentina , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Masculino , Adulto , Inquéritos e Questionários , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Adolescente , Criança , Índice de Gravidade de DoençaRESUMO
Introduction. During the SARS-CoV-2 pandemic, many countries experienced decreased respiratory virus circulation, followed by an out-of-season outbreak. In a pediatric hospital in Colombia, we observed a surge in severe adenovirus infections, leading to concerns about the impact of eased public health restrictions and immune debt in children under five years old. Objective. To describe the clinical characteristics of patients with severe adenovirus infection in a pediatric hospital in Colombia. Materials and methods. We reviewed the data of 227 patients with severe adenovirus infection at the Fundación Hospital Pediátrico La Misericordia. Results. A total of 196 patients were included in this study. The median age was two years, and 62% were male. Adenoviruses were isolated from all patients' samples. Ninetyseven percent were admitted to the pediatric intensive care unit, 94% required respiratory support, and the in-hospital lethality rate was 11%. Conclusion. In 2022, there was an outbreak of severe adenovirus infections, affecting mainly children under five years of age, with higher-than-usual mortality.
Introducción. Durante la pandemia por SARS-CoV-2, muchos países evidenciaron una disminución en la circulación de virus respiratorios, seguida por un brote fuera de la temporada esperada. En un hospital de Colombia, se observó un aumento en los casos de infección grave por adenovirus, lo cual generó preocupación sobre el impacto que tuvo la disminución de los cuidados establecidos durante pandemia y la posible deuda inmunológica en niños menores de cinco años. Objetivo. Describir las características clínicas de los pacientes con infección grave por adenovirus en un hospital pediátrico de Colombia. Materiales y métodos. Se revisaron 227 pacientes con infección grave por adenovirus en la Fundación Hospital Pediátrico La Misericordia, desde el 1° de enero hasta el 31 de diciembre de 2022. Resultados. El estudio incluyó 196 casos. La edad media de los pacientes fue de dos años y el 62 % eran de sexo masculino. Los adenovirus se aislaron a partir de las muestras de todos los pacientes. El 97 % de los pacientes ingresó a la unidad de cuidados intensivos, el 94 % requirió soporte ventilatorio y la tasa de mortalidad fue del 11 %. Conclusiones. En el 2022 hubo un brote de adenovirus que afectó principalmente a los niños menores de cinco años, con una mortalidad mayor a lo reportado con anterioridad en Colombia.
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Infecções por Adenovirus Humanos , Surtos de Doenças , Hospitais Pediátricos , Centros de Atenção Terciária , Humanos , Colômbia/epidemiologia , Masculino , Pré-Escolar , Feminino , Lactente , Criança , Infecções por Adenovirus Humanos/epidemiologia , Adolescente , Mortalidade Hospitalar , Estudos Retrospectivos , Unidades de Terapia Intensiva Pediátrica , Infecções por Adenoviridae/epidemiologia , Recém-NascidoRESUMO
Introducción: Los cuidadores tienen una forma particular de vivir la experiencia de cuidar, adaptándose al sistema de salud que no los reconoce como sujetos de cuidado, y que descarga en ellos labores para las cuales no están preparados ni acompañados en su trayectoria. Objetivo: Integrar los hallazgos de estudios primarios en una metasíntesis cualitativa para describir la experiencia de los cuidadores informales en Colombia. Materiales y métodos: Revisión sistemática de literatura cualitativa o metasíntesis cualitativa. Búsqueda sistemática en metabuscadores incluyendo los descriptores: cuidadores, experiencia, investigación cualitativa, Colombia. La selección de los estudios se realizó con base en la metodología PRISMA y la herramienta COREQ, disponible en la red EQUATOR. Resultados: Se incluyeron 20 estudios primarios cualitativos, se codificaron en 250 códigos nominales, clasificados en 6 categorías centrales: relación entre la diada con su contexto, tocar fondo para fortalecerse espiritualmente, entrega, sobreprotección y limitación propia, momentos claves para adaptarse a cuidar, relación consigo mismo, sistema de salud, políticas y apoyo institucional. Conclusión: Los cuidadores comparten la experiencia de enfermedad junto con su ser querido. Se necesita transformar el sistema de salud para satisfacer las necesidades de las diadas en lugar de las necesidades del enfermo o discapacitado.
Introduction: Caregivers have a particular way of experiencing their caring roles. They have to adapt to a health system that does not recognize them as subjects of care and, at the same time, makes them responsible for tasks for which they are not prepared, without any support. Objective: To incorporate primary studies findings into a qualitative meta-synthesis to describe informal caregivers experience in Colombia. Materials and methods: Systematic review of qualitative literature. A systematic search was carried out using meta-search engines with the following descriptors: caregivers; experience; qualitative research; and Colombia. The study selection followed the PRISMA methodology and the COREQ tool, which is available on the EQUATOR network. Results: 20 qualitative studies were included, which were encoded with 250 nominal codes and classified in 6 central categories: relationship between the dyad and its context; hitting rock bottom to strengthen spiritually; commitment; overprotection and self-limitation; key moments to adapt to the caregiving task; relationship with self; health system; policies and institutional support. Conclusion: Caregivers share the illness experience with their loved ones. The health system needs to change in order to meet the needs of the dyads rather than the needs of the sick of disabled.
Introdução: Os cuidadores possuem uma forma particular de viver a experiência de cuidar, adaptando-se ao sistema de saúde que não os reconhece como sujeitos do cuidado, e que descarrega sobre eles tarefas para as quais não estão preparados ou acompanhados em sua jornada. Objetivo: Integrar os resultados dos estudos primários em uma metassíntese qualitativa para descrever a experiência dos cuidadores informais na Colômbia. Materiais e métodos: Revisão sistemática de literatura qualitativa ou metassíntese qualitativa. Pesquisa sistemática em motores de metabusca incluindo os descritores: cuidadores, experiência, pesquisa qualitativa, Colômbia. A seleção dos estudos foi realizada com base na metodologia PRISMA e na ferramenta COREQ, disponível na rede EQUATOR. Resultados: Foram incluídos 20 estudos primários qualitativos, codificados em 250 códigos nominais, classificados em 6 categorias centrais: relação da díade com seu contexto, atingir o fundo do poço para se fortalecer espiritualmente, entrega, superproteção e autolimitação, momentos-chave para adaptação ao cuidado, relacionamento consigo mesmo, sistema de saúde, políticas e apoio institucional. Conclusão: Os cuidadores compartilham a experiência do adoecimento junto ao seu ente querido. O sistema de saúde precisa de ser transformado para satisfazer as necessidades das díades e não as necessidades dos doentes ou deficientes.
Assuntos
Humanos , Masculino , Feminino , Sistemas de Saúde , Cuidadores , Doenças não Transmissíveis , Adaptação Psicológica , Pessoas com Deficiência , Cultura , Financiamento dos Sistemas de Saúde , Sobrecarga do CuidadorRESUMO
Background: Previous studies reported the negative impact of social isolation on mental health in people with dementia (PwD) and their caregivers, butlongitudinal studies seem scarcer. Objective: To describe a one-year follow-up impact of the COVID-19 pandemic on PwD and their caregivers in both Brazil and Chile. Methods: This study analyzed the impact of the pandemic on the psychological and physical health of PwD and their family caregivers after one year of follow-up in three outpatient clinics in Brazil (nâ=â68) and Chile (nâ=â61). Results: In both countries, PwD reduced their functional capacity after one year of follow-up (pâ=â0.017 and pâ=â0.009; respectively) and caregivers reported worse physical and mental health (pâ=â0.028 and pâ=â0.039). Only in Chile, caregivers reported more sadness associated with care (pâ=â0.001), and reduced time sleeping (pâ=â0.07). Conclusions: In conclusion, the COVID-19 pandemic appears to have had a long-lasting impact on PwD and their caregivers. However, it is essential to acknowledge that the inherent progression of dementia itself may also influence changes observed over a year.
Assuntos
COVID-19 , Demência , Humanos , Cuidadores/psicologia , Pandemias , Saúde Mental , Demência/epidemiologia , Demência/psicologia , Seguimentos , Chile/epidemiologia , Brasil/epidemiologia , COVID-19/epidemiologiaRESUMO
PURPOSE: It is known that cerebral palsy (CP) children's caregivers suffer from burden, depression, and stress, impairing their quality of life (QoL). The more severe the CP, the more burden the caregiver has. Psychosocial support, education, therapies, and financial support are inversely related to the level of stress of the caregiver. Most parents of CP patients submitted to selective dorsal rhizotomy (SDR) report improvement not just on spasticity, but also in the functional role of the children, what can impact on caregiver's QoL. Our objective was to evaluate the burden of CP children's caregivers with and without previous SDR. METHODS: Spastic CP children caregivers were divided into two groups: those who take care of children without previous SDR (control group) and those that children were previously submitted to SDR (surgical group). The burden index was compared between groups using Burden Interview Questionnaire (BIQ). For statistical analysis, we used SPSS. RESULTS: The control group had enrolled 31 participants and the surgical group 36. The mean GMFCS level on the control and surgical groups was 3.94 ± 1.26 and 3.74 ± 1.12 (p = 0.61), respectively. The surgical group caregivers presented less burden related to the feeling that they should be doing more to their child (p = 0.003) and if they could do a better job in caring (p = 0.032), compared to controls. The total BIQ index was not significantly different between groups (surgical 32.14 ± 12.34 vs. control 36.77 ± 12.77; p = 0.87). Low economic status had a weak correlation to a higher BIQ index (R2 = 0.24). After age-matching, there was a significative higher BIQ index in the control group (p = 0.008). CONCLUSION: Caregivers of spastic CP children who were previously submitted to SDR presented less burden related to feeling of the amount of given care than those without previous surgery. The impression that they could do a better job with their kids was higher in the control group. The severity of CP and low economic status were related to more burden in both groups. After pairing groups by age, the control group had a significative higher BIQ index compared to the SDR group. CLINICAL TRIAL REGISTRATION: Trial registration number: CAAE 73407317.6.0000.0068 (Ethical and Research Committee of University of Sao Paulo, Sao Paulo, Brazil, approved on 08/06/2021). All the subjects were freely given an informed consent to participate in the study that was obtained from all participants. Non-consented ones were excluded from the study.
Assuntos
Paralisia Cerebral , Rizotomia , Criança , Humanos , Cuidadores , Paralisia Cerebral/cirurgia , Qualidade de Vida , Resultado do Tratamento , Espasticidade Muscular/cirurgia , BrasilRESUMO
OBJECTIVES: Evaluate clinical outcomes of stroke survivors in Peru discharged with artificial nutrition via a feeding tube (FT), and explore perspectives and experiences of these patients and their caregivers. METHODS: Retrospective chart review to describe the prevalence of FT placement and characteristics of patients admitted with stroke to the Instituto Nacional de Ciencias Neurológicas in Lima, Peru between January 2019 and 2021. Follow-up calls to stroke survivors discharged home with FTs or their caregivers included quantitative and qualitative questions to assess long-term outcome and explore perspectives around poststroke care and FT management. We analyzed quantitative data descriptively and applied thematic analysis to qualitative data using a consensus-driven codebook. RESULTS: Of 812 hospitalized patients with stroke, 146 (18%) were discharged home with FT, all with nasogastric tubes (NGTs). Follow-up calls were performed a median of 18 months after stroke with 96 caregivers and three patients. Twenty-five patients (25%) had died, and 82% of survivors (n = 61) remained dependent for some care. Four themes emerged from interviews: (1) perceived suffering (physical, emotional, existential) associated with the NGT and stroke-related disability, often exacerbated by lack of preparedness or prognostic awareness; (2) concerns around compromised personhood and value-discordant care; (3) coping with their loved-one's illness and the caregiving role; and (4) barriers to NGT care and skill acquisition. CONCLUSION: We identified a high burden of palliative and supportive needs among severe stroke survivors with NGTs and their caregivers suggesting opportunities to improve poststroke care through education, communication, and support.
Assuntos
Cuidadores , Acidente Vascular Cerebral , Humanos , Cuidadores/psicologia , Nutrição Enteral , Estudos Retrospectivos , Peru , Acidente Vascular Cerebral/terapiaRESUMO
BACKGROUND: Neurodegenerative diseases lead to difficulties with functional activities. In Peru, most caregivers are family members. Little is known about the COVID-19 pandemic's effect on caregivers in Peru. METHODS: This was a cross-sectional, prospective study of family caregivers of dependent patients with dementia or Parkinson's Disease in Lima, Peru. A caregiver burden and mental health questionnaire was administered to the caregiver. RESULTS: We enrolled 48 caregivers (65% females, mean ± SD age 49.0 ± 12.3 years); 70% of patients had dementia. Nearly 40% of caregivers reported having full-time jobs, and 82% felt overwhelmed with almost 75% dedicating more time to caregiving during the pandemic. Caregivers perceived patients felt lonelier (52%), had an increase in hallucinations (50%), or forgetfulness (71%) compared to pre-pandemic. CONCLUSIONS: Our study highlights that perceived caregiver burden and patient behavioral symptoms may have been exacerbated during the pandemic. In countries such as Peru, more caregiving resources and interventions are needed.
Assuntos
COVID-19 , Demência , Doenças Neurodegenerativas , Feminino , Humanos , Adulto , Pessoa de Meia-Idade , Masculino , Cuidadores , Sobrecarga do Cuidador , Pandemias , Doenças Neurodegenerativas/epidemiologia , Doenças Neurodegenerativas/terapia , Peru/epidemiologia , Estudos Transversais , Saúde Mental , Estudos ProspectivosRESUMO
This study explored the lived experiences of five family caregivers of stroke survivors in a village in Cebu City, Philippines. Data was gathered through individual in-depth interviews and underwent interpretative phenomenological analysis. Three themes emerged: (1) Altruism of caregiving: Of self and family, (2) Victories in caregiving, and (3) Burdens of caregiving. Themes illustrated the duality of roles, overcoming difficulties of caregiving, and sources of motivation in caregiving. Findings indicate that a need for collaborative efforts and active involvement between the communities and occupational therapy with the healthcare system to provide programs and support to family caregivers.
Assuntos
Terapia Ocupacional , Acidente Vascular Cerebral , Humanos , Cuidadores , Filipinas , Família , Sobreviventes , Pesquisa QualitativaRESUMO
Objective: to assess the efficacy of a Hospital Discharge Transition Plan in the care competence and in adherence to the therapy of dyads comprised by patients with non-communicable chronic diseases and their caregivers. Method: a controlled and randomized clinical trial; the sample was comprised by 80 dyads of patients with chronic conditions and their caregivers, randomly allocated as follows: 40 to the control group and another 40 to the intervention group. The instruments to characterize the patient-caregiver dyad, the patients' and caregivers' care competence and the patients' adherence to the treatment scale were applied. The " CUIDEMOS educational intervention" was applied to the intervention group; in turn, the control group was provided usual care with the aid of a booklet, with phone follow-up via at month 1. Results: 52.5% of the patients and 81.3% of the caregivers were women. The patients' and caregivers' mean ages were 69.5±12.6 and 47.5±13.1 years old, respectively. The Hospital Discharge Transition Plan increased the scores in the "knowledge", "uniqueness", "instrumental", "enjoying", "anticipation" and "social relations" dimensions, as well as the global care competence of the patients and family caregivers; in addition to the following factors: medications, diet, stimulants control, weight control, stress management, and global adherence to the therapy by the patient. There were no statistically significant differences between the control and intervention groups. Conclusion: the Hospital Discharge Transition Plan increased the patients' and family caregivers' care competence after the intervention, as well as the patients' adherence to the treatment. However, there were no differences between the control and intervention groups, possibly due to the similarity of the activities.
Objetivo: evaluar la eficacia del Plan Transicional de Alta Hospitalaria en la competencia para el cuidado y adherencia terapéutica de la díada paciente-cuidador con enfermedad crónica no transmisible. Método: ensayo clínico aleatorizado controlado; la muestra estuvo conformada por 80 diadas paciente-cuidador con condición crónica asignadas aleatoriamente, 40 diadas al grupo control y 40 al grupo intervención. Se aplicaron los instrumentos de caracterización de la díada paciente-cuidador, competencia para el cuidado del paciente y cuidador y la escala de adherencia al tratamiento del paciente. Se realizó la "Intervención Educativa Cuidemos" al grupo intervención y al grupo control se le brindaron los cuidados habituales con ayuda de un folleto; con seguimiento telefónico al mes. Resultados: el 52,5% de los pacientes son mujeres al igual que el 81,3% de los cuidadores. El promedio de edad en pacientes y cuidadores es de 69,5±12,6 y 47,5±13,1 años. El Plan Transicional de Alta Hospitalaria aumentó los puntajes de las dimensiones, conocimiento, unicidad, instrumental, disfrutar, anticipación y relación y la competencia global del cuidado del paciente y cuidador familiar. También, los factores medicamentos, dieta, control de estimulantes, control del peso, manejo del estrés y la adherencia terapéutica global del paciente. No hubo diferencias estadísticamente significativas entre el grupo control e intervención. Conclusión: el Plan Transicional de Alta Hospitalaria aumenta la competencia para el cuidado del paciente y cuidador familiar post intervención, y también la adherencia del paciente. Sin embargo, no hubo diferencias entre el grupo intervención y control, posiblemente debido a la semejanza de las actividades.
Objetivo: avaliar a efetividade do Plano Transicional de Alta Hospitalar na competência para o cuidado e adesão terapêutica da díade paciente-cuidador com doença crônica não transmissível. Método: ensaio clínico randomizado controlado; a amostra foi composta por 80 díades paciente-cuidador com condição crônica distribuídas aleatoriamente, sendo 40 díades para o grupo controle e 40 para o grupo intervenção. Foram aplicados os instrumentos de caracterização da díade paciente-cuidador, competência do cuidar de pacientes e cuidadores e escala de adesão ao tratamento do paciente. No grupo intervenção foi realizada a " Intervención Educativa Cuidemos " e no grupo controle foram prestados os cuidados habituais, com auxílio de folheto; com acompanhamento telefônico após um mês. Resultados: 52,5% dos pacientes são mulheres, assim como 81,3% dos cuidadores. A idade média dos pacientes e cuidadores é de 69,5±12,6 e 47,5±13,1 anos. O Plano Transicional de Alta Hospitalar aumentou os escores das dimensões conhecimento, singularidade, instrumentalidade, desfrutar, antecipação e relação e competência global do cuidado ao paciente e cuidador familiar. Também os fatores medicamentos, dieta, controle de estimulantes, controle de peso, gerenciamento de estresse e adesão terapêutica geral do paciente. Não houve diferenças estatisticamente significativas entre os grupos controle e intervenção. Conclusão: o Plano Transicional de Alta Hospitalar aumenta a competência para o cuidado do paciente e do cuidador familiar pós-intervenção, e também a adesão do paciente. Porém, não houve diferenças entre os grupos intervenção e controle, possivelmente pela semelhança das atividades.
Assuntos
Humanos , Masculino , Feminino , Educação de Pacientes como Assunto , Doença Crônica , Cuidado Transicional , Sobrecarga do Cuidador , Cooperação e Adesão ao TratamentoRESUMO
Este estudo teve como objetivo analisar as experiências das famílias de crianças com Transtorno do Espectro Autista (TEA), a partir da perspectiva do cuidador principal. Trata-se de pesquisa descritiva e exploratória com abordagem qualitativa que diz respeito à atenção à saúde da criança com TEA e à percepção relacionada ao apoio que compõem ou que se ausentam no cotidiano do cuidado vivenciado pela criança e família. O estudo foi desenvolvido em um município do estado de Minas Gerais, Brasil e teve como campos para coleta de dados uma Organização não Governamental e um Núcleo de Ensino e Pesquisa do Desenvolvimento Infantil, vinculado a uma instituição pública federal de ensino superior. Os critérios de inclusão foram familiares de crianças de zero a 6 anos com diagnóstico de TEA nesses serviços; e familiar com mais de 18 anos, identificado como principal cuidador da criança. Para a obtenção dos dados, foram construídos, Genograma e Ecomapa, seguidos de entrevistas semiestruturadas, individuais e audiogravadas. A Análise Temática Indutiva e o Interacionismo Simbólico foram marcos teórico e metodológico que permitiram codificar o corpus analítico. O projeto foi aprovado pelo Comitê de Ética em Pesquisa da Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo e todos os preceitos éticos foram seguidos. Um total de 20 entrevistas foram conduzidas com os cuidadores principais. Verificou-se maior frequência de cuidadores com idade entre 20 e 34 anos (60%), mulher cisgênero (90%), 10% com emprego formal, 50% com ensino médio, 25% em uma união estável e apenas 15% casados. Em relação às crianças com TEA, 70% apresentaram idade entre 26 e 50 meses e destas, 95% eram do sexo masculino. Das entrevistas surgiram cinco temas: "Aproximando-se do TEA: suspeitas e busca por informações"; que destaca a primeira aproximação que os cuidadores tiveram com o transtorno, remetendo a fatores que estreitam a busca pelo diagnóstico; "Confirmando o diagnóstico: sentimentos e percursos", revelando os sentimentos e as percepções que os cuidadores tiveram frente ao diagnóstico, assim como a busca pela assistência e o amparo recebido; "Definindo e reconhecendo o apoio social", evidenciando as dificuldades pela busca de apoio e o que os cuidadores consideravam como apoio social, além de destacarem os tipos de suporte que necessitavam; "Cuidando da criança com TEA: fortalezas e fragilidades", retratando toda a trajetória do cuidador principal, a busca por assistência e o empenho despendido com a criança atrelado aos medos e forças e "Enfrentando e ressignificando o olhar acerca do TEA", abordando a percepção que os cuidadores tinham em relação ao olhar da sociedade perante o TEA e as estratégias que criaram para que pudessem ressignificar suas vivências. O estudo traz considerações relevantes para refletir sobre o quão importante é uma rede de apoio sólida, capaz de fornecer subsídios socioemocionais, físicos, estruturais e financeiros para aquele que desempenha a função de cuidador principal de uma criança com TEA, uma vez que os cuidados são complexos e extrapolam o contexto familiar.
This study aimed to analyze the experiences of families of children with Autism Spectrum Disorder, from the perspective of the primary caregiver. This is a descriptive and exploratory research with a qualitative approach that concerns the healthcare of children with Autism Spectrum Disorder (ASD) and the perception related to the support that comprises or is absent in the daily care experienced by the child and family. Study developed in a municipality in the state of Minas Gerais, Brazil, which data collection took place at a Non-Governmental Organization and at a Child Development Teaching and Research Center, linked to a public higher education institution. The inclusion criteria were family members of children aged zero to 6 years old diagnosed with ASD for at least six months and without other health diagnoses; children who are attended to in these services; and family member over 18 years of age, identified as the child's main caregiver. In order to obtain the data, we construct Genogram and Ecomap with each family caregiver, followed by semi-structured, individual and audio-recorded interview. The Inductive Thematic Analysis and the theoretical framework of Symbolic Interactionism allowed to coding the analytical corpus. The Research Ethics Committee of the Ribeirão Preto College of Nursing at University of São Paulo approved the research and all ethical precepts followed. From 20 interviews conducted, there was a higher frequency of caregivers aged between 20 and 34 years old (60%), cisgender women (90%), 10% with formal employment, 50% with secondary education, 25% in a stable union and only 15% married. Regarding to children with ASD, 70% were aged between 26 and 50 months and of these, 95% were male. We identified five themes which emerged from the interviews: "Approaching ASD: suspicions and search for information"; this highlights the first approach that caregivers had with Autism Spectrum Disorder, referring to factors that narrow the search for diagnosis. "Confirming the diagnosis: feelings and paths", revealing the feelings and perceptions that caregivers had regarding the diagnosis, as well as the search for assistance and the support received. "Defining and recognizing social support", which highlighting the difficulties in seeking support and what caregivers consider as social support, in addition to highlighting the types of support they need. "Caring for a child with ASD: strengths and weaknesses", portraying the entire trajectory of the main caregiver, the search for assistance and the commitment spent on the child linked to fears and strengths. The last theme is "Facing and giving new meaning to the view of ASD", addressing the perception that caregivers have in relation to society's view of ASD and the strategies they created so that they could give new meaning to their experiences. The study brings relevant considerations to reflect on how important a solid support network is, capable of providing socio-emotional, physical, structural and financial support for those who play the role of primary caregiver for a child with ASD, since care is complex and go beyond the family context.