Caregiver burden in Parkinson's disease: a mixed-methods study.

BACKGROUND: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden. METHODS: We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively. RESULTS: A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism. CONCLUSIONS: The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Qualidade de vida e sobrecarga de mães de crianças com microcefalia / Quality of life and caregiver burden in mothers of children with microcephaly

Introdução: Devido a infecção congênita, a criança com microcefalia possui grandes limitações de sua condição de saúde. Estas limitações fazem com que a criança necessite de maior atenção de saúde e domiciliar. Geralmente, a mãe torna-se cuidadora principal desta criança, esse papel pode levar a sobrecarga com prejuízos em sua qualidade de vida. Objetivo: Analisar sobrecarga do cuidado e a qualidade de vida de mães ou cuidadoras principais de crianças com microcefalia relacionada à infecção congênita. Método: Estudo transversal, correlacional, realizado com 105 participantes do estado de Sergipe, Brasil, durante o período de outubro de 2017 a abril de 2018, através da aplicação questionários: sociodemográfico, WHOQOL-Bref e Sobrecarga do cuidador. Para análise estatística foram utilizados testes ANOVA, teste t e Person (r). Resultados: A totalidade dos participantes era do sexo feminino, 39 % foram classificadas com sobrecarga severa e 30,5% com sobrecarga intensa. A média total da sobrecarga (49,47) indica classificação de moderada à severa. Houve uma forte associação (p<0,0001) entre os níveis de sobrecarga e os domínios da qualidade de vida, sendo o de maior prejuízo o ambiental (36,57) e o físico (38,53). Foi observada uma correlação significativa e inversamente proporcional (r=-0,547, p<0,0001) entre a qualidade de vida e a sobrecarga do cuidador. Conclusão: As mães sofrem sobrecarga severa e intensa que pode levar a repercussões negativas em sua qualidade de vida. A enfermagem pode contribuir na criação e implementação de linhas de cuidados específicas para estas mulheres com ênfase na promoção da saúde física, mental e melhora da qualidade de vida.

Introducción: Debido a la infección congénita, las niñas y los niños con microcefalia tienen grandes limitaciones en su estado de salud. Estas limitaciones hacen que necesiten más atención sanitaria y domiciliaria. Generalmente, la madre se convierte en la principal cuidadora y este papel puede llevar a la sobrecarga, con perjuicio para su calidad de vida. Objetivo: Analizar la sobrecarga de cuidado y la calidad de vida de las madres o personas cuidadoras primarias de niñas o niños con microcefalia, relacionada con infección congénita. Método: Estudio transversal, correlacional realizado con 105 participantes del estado de Sergipe, Brasil, de octubre de 2017 a abril de 2018, a través de la aplicación de los siguientes cuestionarios: sociodemográfico, el WHOQOL-Bref y escala de sobrecarga del cuidador. Para el análisis estadístico, se utilizaron ANOVA, prueba t y prueba Person (r). Resultados: Población totalmente femenina. El 39 % se clasificó con sobrecarga severa y el 30.5 % con sobrecarga intensa. La sobrecarga media total (49.47) indica una clasificación de moderada a grave. Hubo una fuerte asociación (p<0.0001) entre los niveles de carga y los dominios de la calidad de vida, siendo los mayores daños ambientales (36.57) y físicos (38.53). Se observó una correlación significativa e inversamente proporcional (r=-0.547, p<0.0001) entre la calidad de vida y la sobrecarga de la persona cuidadora cuidador. Conclusión: Las madres sufren una sobrecarga severa e intensa que influye negativamente en su calidad de vida. La enfermería puede contribuir para la creación e implementación de líneas de atención específicas para estas mujeres con énfasis en la promoción de la salud física y mental y la mejora de la calidad de vida.

Introduction: Due to congenital infection, children with microcephaly have great limitations due to this condition. These limitations make the child need more health and home care. Generally, the mother becomes the main caretaker for this child, this role can lead to overload feelings that affect their quality of life. Objective: To analyze the role overload and the quality of life of mothers or primary caregiver of children with microcephaly related to congenital infection. Method: Cross-sectional, correlational study carried out with 105 participants from the state of Sergipe, Brazil, during the period from October 2017 to April 2018, through the application of questionnaires: sociodemographic, WHOQOL-Bref, and caregiver burden. For statistical analysis, ANOVA, t-test, and Pearson (r) tests were used. Results: All of the participants were females, 39 % were classified with severe role overload and 30.5% with intense role overload. The total average of this caregiver burden (49.47) presents a moderate to severe classification. There was a strong correlation (p<0.0001) between the levels of their role overload and the domains of their quality of life, where the greatest damage was in the environmental (36.57) and physical (38.53) aspects. A significant and inversely proportional correlation (r=-0.547, p<0.0001) was observed between the quality of life and the caregiver burden. Conclusion: Mothers suffer severe and intense caregiver overload that has a negative influence on their quality of life. Nursing can contribute to the creation and implementation of specific lines of care for these women emphasizing the promotion of physical and mental health to improve their quality of life.

The indirect effect of positive aspects of caregiving on the relationship between cognitive decline and dementia caregiver burden.

BACKGROUND: Research has linked increased cognitive decline in a dementia care recipient to worsening caregiver burden, but the presence of positive aspects of caregiving is associated with better outcomes. As cognitive decline worsens, a lack of positive caregiving experiences could lead to burden for the caregiver. This study investigated relationships among dementia caregiver burden, cognitive decline, and positive aspects of caregiving in dementia, predicting an indirect effect of positive aspects of caregiving. METHODS: Data from 724 patients of an outpatient memory clinic in Ohio were examined and dyads included based on clinically supported patient diagnoses on the dementia spectrum. Caregivers completed the Zarit Burden Interview (ZBI) and Positive Aspects of Caregiving (PAC) measures. The Montreal Cognitive Assessment and Mini-Mental State Examination were used to estimate cognitive decline, standardized to create a single variable. Multiple potential covariates were considered for inclusion in the model. A cross-sectional mediation analysis using the Hayes PROCESS macro explored the presence of an indirect effect of PAC on the relationship between cognitive decline and ZBI using 5000 bootstrap samples. RESULTS: Only the potential covariate caregiver age was correlated with any of the primary variables; this variable was controlled in analyses. Significant relationships emerged between cognitive decline and ZBI (r = -0.12, P < 0.001), between PAC and ZBI (r = -0.23, P < 0.001), and between cognitive decline and PAC (r = -0.07, P < 0.05). An indirect effect of positive aspects of caregiving on the relationship between cognitive decline and ZBI was statistically significant (B = 0.0092, 95% bias-corrected confidence interval: 0.0008, 0.0185), accounting for 14.4% of the variance in the model. CONCLUSIONS: A lack of positive aspects of caregiving could be partially responsible for development of dementia caregiver burden as cognitive decline worsens. Longitudinal examination of these relationships is needed to understand causality fully. Findings may help healthcare providers tailor treatment to alleviate caregiver burden.

Maternal Distress and Adolescent Mental Health in Poor Chinese Single-Mother Families: Filial Responsibilities-Risks or Buffers?

Single motherhood and poverty have a significant, negative impact on mothers and their children. When their mothers experience maternal distress, adolescent children have to take up more instrumental and emotional filial responsibilities to comfort their mother and adapt to related changes. Based on 325 mother-child dyads of Chinese single-mother families experiencing economic disadvantage, this study examined the relationship between maternal distress and adolescent mental health problems (indexed by anxiety and depression) and the moderating roles of instrumental and emotional filial responsibilities. Results indicated that maternal distress was positively associated with anxiety and depression in adolescent children. In addition, instrumental filial responsibility intensified the associations of maternal distress with adolescent anxiety and depression. Moreover, the moderating role of emotional filial responsibility in the predictive relationship between maternal distress and adolescent anxiety was different in boys and girls. Adolescent girls with more emotional filial responsibility reported higher adolescent anxiety than did those who shouldered less emotional filial responsibility when their mother exhibited more distress, whereas the relationship between maternal distress and adolescent anxiety was stable in boys, regardless of emotional filial responsibility. In short, the present study showed that parentification was likely to occur in poor Chinese single-mother families, and adolescent children who took up a more caregiving role in the family exhibited poorer mental health. Family counselling and tangible support for single-mother families experiencing economic disadvantage are urged.

The Senior Companion Program Plus (SCP Plus): Examining the Preliminary Effectiveness of a Lay Provider Program to Support African American Alzheimer's Disease and Related Dementias (ADRD) Caregivers.

OBJECTIVES: A culturally informed, peer-led, lay provider model, the Senior Companion Program (SCP) Plus, was implemented to decrease caregiving burden/stress and improve coping skills and social support for African American ADRD caregivers. This study reported the preliminary effectiveness of this intervention. METHODS: An explanatory sequential mixed methods design was used in this study, and a randomized control trial was conducted for the SCP Plus intervention among participants in three sites (n = 20). A subsample of participants (n = 7) consented to a qualitative interview about their experiences with the intervention. Wilcoxon signed-rank tests, Friedman tests, and one-way repeated measures ANOVA were computed for quantitative analyses. Thematic analysis was used for the qualitative interviews. RESULTS: Results demonstrated that knowledge of AD/dementia (KAD) and preparedness for caregiving were significantly improved for all senior companions in the intervention group. Results also showed that caregivers in the intervention group reported significantly decreased caregiving burden, as well as increased KAD, satisfaction with social support, and positive aspects of caregiving. Themes from the qualitative interviews included: learning new skills about caregiving, gaining knowledge about ADRD, and benefits for the dyad. DISCUSSIONS: Findings from this study implied that SCP Plus was a promising model for African American family caregivers as it benefits both the SC volunteers and the African American ADRD family caregivers.

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic.

INTRODUCTION: Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers' pandemic-related changes and experiences - namely those related to their health, healthcare access, and well-being - were associated with their caregiving burden. METHODS: Caregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden. RESULTS: Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes. DISCUSSION: Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes. CONCLUSION: Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.

Untangling the role of social relationships in the association between caregiver burden and caregiver health: an observational study exploring three coping models of the stress process paradigm.

BACKGROUND: Caregivers health is often at risk due to the detrimental effects of caregiver burden. It is therefore vital to identify strategies and resources, which ensure the safeguarding of caregivers' health, whilst also enabling caregivers to continue providing high quality long-term care to care-receivers. The objective of this study is therefore to examine the moderating and mediating role of different social relationship constructs (social networks, social support, relationship quality, and loneliness) in the relationship between subjective caregiver burden and health, by exploring different coping models of the stress process paradigm, namely the stress buffering, social deterioration and counteractive models. METHODS: Longitudinal survey data from 133 couples of caregiving romantic partners and persons with spinal cord injury, living in Switzerland were used. We employed multivariable regression analysis with the inclusion of interaction terms to explore moderation effects of social relationships (i.e. stress buffering model), and path analysis to explore mediation effects (i.e. social deterioration vs. counteractive model) of social relationships on the association between subjective caregiver burden and health. Health was operationalised using the following outcomes: mental health, vitality, bodily pain and general health. RESULTS: Social support and relationship quality were found to buffer the negative effects of subjective caregiver burden on mental health. Mediating effects of social relationships were observed for mental health (indirect effect -0.25, -0.42- -0.08) and vitality (indirect effect -0.20, -0.37- -0.03), providing support for the deterioration model. Loneliness was found to be a particularly important construct on the pathway from caregiver burden to health. CONCLUSION: Our study highlights the potential of social support and relationship quality to override the negative consequences of caregiver burden on mental health and vitality. Our evidence thus supports the advance of interventions that seek to improve qualitative aspects of social relationships, especially in caregivers experiencing a high subjective caregiver burden.

Sobrecarga de madres de niños y adolescentes con trastornos del neurodesarrollo / Burden of mothers of children and adolescents with neurodevelopmental disorders

El cuidado de niños y adolescentes con trastornos del neurodesarrollo implica altas demandas físicas, financieras y emocionales y puede asociarse con el surgimiento de sobrecarga parental. Como consecuencia, aumenta la frecuencia de empeoramiento conductual del menor y de trastornos depresivos y de ansiedad en el adulto responsable. Se describen los casos de tres madres de pacientes con trastornos del desarrollo que presentaron sobrecarga parental para aumentar la visibilización de esta problemática en ámbitos pediátricos. Todos los hijos estaban recibiendo plan psicofarmacológico por la presencia de alteraciones conductuales y solo uno tenía acompañante terapéutico. La detección temprana y derivación de los padres con sobrecarga es imprescindible para mejorar la calidad de vida de los niños y los adolescentes con trastornos del neurodesarrollo y sus familias

Introduction: The care of children and adolescents with neurodevelopmental disorders involves high physical, financial and emotional demands, and it may be associated with the emergence of parenting stress. As a result, there is an increase in the frequency of minor behavioral worsening and depressive and anxiety disorders in the responsible adult. The cases of three mothers of patients with developmental disorders are described in order the visibility of this problem in pediatric settings. All the children were receiving psychotropics for the presence of behavioral alterations and only one had a therapeutic companion. Conclusion: Early detection and referral of parenting stress is essential to improve the quality of life of children and adolescents with neurodevelopmental disorders and their families. Objectives: to describe the initial clinical findings of patients with CVID diagnosed at Hospital de Niños Sor Maria Ludovica, between 1981 and 2019. 19 patients were included, 14 were male (74%). All Patients Had a history of recurrent infections, most frequently pneumonia (74%) and acute otitis media (42%). 9 patients suffered from chronic diarrhea (47%), with associated malabsorption in 6 of them. Thirty-two presented with severe malnutrition and 1 patient with gastric metaplasia. One Patient Had Splenomegaly and 1 had Evans´ syndrome. Bronchiectasis were found in 42% of patients at the time of diagnosis. Early suspicion of CVID from pediatricians is essential in order to arrive at a proper diagnosis

Impact of home parenteral nutrition on family members: A national multi-centre cross-sectional study.

BACKGROUND & AIMS: Home parenteral nutrition (HPN) is a necessary treatment for patients with chronic, type 3, intestinal failure (IF). HPN often requires lifestyle adaptations, which are likely to affect quality of life (QoL) in both patients and family members. The aim of this study was to identify the level of burden on family members who are involved with HPN care and to understand specific factors that contribute to any burden. METHODS: Patients over the age of 18 and receiving HPN were identified in IF clinics from multiple centres across the U.K. Eligible patients were asked to complete the parenteral nutrition impact questionnaire (PNIQ) to assess their QoL, while family members were asked to complete the burden scale for family caregivers (BSFC). Logistical regression was undertaken giving adjusted odds ratios (aOR). RESULTS: 678 participants completed the survey representing 339 patients with their appointed family member. Mean PNIQ score was 11.53 (S.D. 5.5), representing a moderate impact of HPN on patients' QoL. On the BSFC scale, 23% of family members reported a moderate to very severe subjective burden indicating an increased risk of psychosomatic symptoms. After adjusting for age and gender, predictors of BSFC included: family members self-reported health status using the EuroQol visual analogue scale (aOR 19.91, 95% CI 1.69, 233.99, p = 0.017) and support received by health services (aOR = 5.83, 95% CI = 1.93, 17.56, p = 0.002). Employment status, disease type, number of nights on HPN and length of time on HPN were not associated with BSFC. CONCLUSIONS: Family members with a poor health status or lack of support by health service were more likely to have a moderate to very severe subjective burden. Tailored support from the multi-professional IF team may reduce the burden experienced by family members of people dependent on HPN.

Partner Care Arrangements and Well-Being in Mid- and Later Life: The Role of Gender Across Care Contexts.

OBJECTIVES: We assess gender moderation in the association between partner care arrangements and individuals' well-being, and the extent to which gender differences vary across European care contexts. METHODS: We use 2015 data from the Survey of Health, Ageing and Retirement in Europe for 3,465 couples aged 50+, where at least 1 partner receives care. We assess gender differences in individuals' life satisfaction and depressive symptoms across 5 partner care arrangements: solo-; shared formal; shared informal; outsourced formal; and outsourced informal care. We explore heterogeneity in the gendered associations across 4 care contexts: Northern, Western, Southern, and Eastern Europe. RESULTS: Sharing care with formal providers is associated with lower well-being among women than men, with a significant well-being "penalty" among Southern European women with partners in shared formal care. Outsourcing partner care to informal providers is associated with higher well-being than other care arrangements for men across care contexts, but with lower well-being for women in Southern Europe. DISCUSSION: Policies to support caregivers' well-being need to be sensitive to the coordination of formal and informal caregiving support for men and women in their respective care contexts.

Rural Versus Non-Rural Residence and Psychosocial Outcomes Among Caregivers of Patients with Dementia and Related Disorders.

We used data on 718 dementia caregivers and multivariable linear regression to test associations between residential locale and psychosocial outcomes (grief, wellbeing, burden, quality of life [QOL], self-efficacy/mastery, and social networks). Rural residence (versus urban or suburban) was not associated with the psychosocial outcomes. However, for rural caregivers, greater self-efficacy/mastery was associated with lower grief (versus urban/suburban) and burden (versus suburban), and greater social network quality was associated with lower burden (versus suburban) and higher QOL (versus urban). Interventions targeting self-efficacy/mastery and social networks may be particularly effective at improving rural caregivers' mental health and QOL.

Perceived Gratitude, Role Overload, and Mental Health Among Spousal Caregivers of Older Adults.

OBJECTIVES: We investigated whether spousal caregivers' greater perception of being appreciated by their partner for their help was associated with caregivers' better mental health and whether caregivers' higher role overload was related to their poorer mental health. We further evaluated whether spousal caregivers' greater perceived gratitude buffered the association between their role overload and mental health. METHODS: We examined 306 spousal caregivers of older adults with chronic illness or disability, drawn from the 2011 National Health and Aging Trends Study and National Study of Caregiving. We defined mental health as better psychological well-being and less psychological distress (i.e., fewer depressive and anxiety symptoms). Hierarchical regression models were estimated to test hypotheses. RESULTS: Greater perceived gratitude was associated with better psychological well-being, and higher role overload was related to poorer psychological well-being and greater psychological distress. In addition, greater perceived gratitude buffered the associations between role overload and anxiety symptoms as well as psychological well-being. DISCUSSION: Findings suggest that spousal caregivers' role overload may be a strong risk factor for their poorer mental health, especially when caregivers feel less appreciated by their partner. Couple-oriented interventions to improve spousal caregivers' mental health could be aimed at reducing their role overload and enhancing perceived gratitude.

Health-related quality of life and caregiver burden after hip reconstruction and spinal fusion in children with spastic cerebral palsy.

AIM: To evaluate the effect of hip reconstruction or spinal fusion on health-related quality of life (HRQoL) in non-ambulatory children with spastic cerebral palsy (CP) and caregiver burden. METHOD: This was a prospective, longitudinal study of changes in HRQoL and caregiver burden over the 5 years after surgical correction of hip instability or scoliosis in children with bilateral spastic CP classified in Gross Motor Function Classification levels IV or V. Serial parent proxy measures of HRQoL and caregiver burden were obtained before and 6 weeks, and 3, 6, 9, 12, 24, and 60 months after surgery using the Caregiver Priorities and Child Health Index of Life with Disabilities and the Assessment of Caregiver Experience with Neuromuscular Disease. Scores 5 years or more after surgery were compared to pre-surgery scores using paired Student's t-tests. Serial outcome trajectories were estimated by linear mixed modeling. RESULTS: Of 69 participants (40 males, 29 females; mean age 11y 6mo, SD 4y 1mo, range 3y 10mo-20y 7mo), 43 had hip reconstruction and 26 had spinal fusion. Clinically significant improvements in HRQoL were detected (average increase 7.6 points) 5 years or more postoperatively, with hip reconstruction providing greater benefit. Domains improved by surgery included positioning, transferring/mobility, comfort/emotions, and health. Caregiver burden did not change as these children remain maximally dependent. INTERPRETATION: Surgical treatment of hip and spine deformity improves HRQoL, especially for painful hip instability, but does not change caregiver burden.

Sobrecarga dos cuidadores primários de crianças com cardiopatia congênita / Burden of primary caregivers of children with congenital heart disease

Objetivos: Identificar o nível de sobrecarga de cuidadores primários de crianças com cardiopatia congênita e analisar os fatores associados. Método: tratou-se de um estudo transversal descritivo com abordagem quantitativa. Participaram da pesquisa 100 cuidadores primários de crianças com cardiopatia congênita na faixa etária de 0 a 12 anos. Utilizou-se um questionário para caracterização da amostra (cuidadores e as crianças), que compôs as variáveis independentes do estudo e a versão brasileira da Escala de Sobrecarga do cuidador (Zarit Burden Interview) para avaliar o nível de sobrecarga, de onde foram extraídas as variáveis dependentes do estudo. A análise dos dados foi realizada por meio do programa SPSS 24 e aplicado o teste estatístico de regressão linear bivariada e multivariada, além da estatística descritiva e considerando p<0,05 para significância. Resultados: o escore médio da sobrecarga física, social e emocional dessas mães cuidadoras foi de 34,46 e o nível de sobrecarga que apresentaram foi sobrecarga moderada (56%). Houve correlação negativa entre a sobrecarga e a criança apresentar comorbidades, frequentar creche ou escola e a criança estar em acompanhamento especializado, e o cuidador que não vive com parceiro apresentou chance de maior nível de sobrecarga. Conclusões: a presença de cardiopatia congênita em crianças constitui causa de sobrecarga física, social, financeira e emocional em seus cuidadores primários. É inquestionável que haja vinculação da família nas ações de cuidados prestados em serviços de saúde, sobretudo em consultas ambulatoriais.

Objectives: To indentify the level of burden of primary caregivers of children with congenital heart disease and to analyze associated factors. Methods: This is an exploratory cross-sectional study with a quantitative approach. A total of 100 primary caregivers of children aged between 0 and 12 years old participated in the research. A questionnaire was used to characterize the sample (caregivers and children) and the Brazilian version of the Caregiver Burden Scale (Zarit Burden Interview) to characterize the sample (caregivers and children). assess the level of overload. Data analysis was performed using the SPSS 21 program and applied bivariate and multivariate linear regression statistical tests, in addition to descriptive statistics, considering p<0.05 for significance. Results: The average score of physical, social and emotional burden of these caregiver mothers was 34.46 and the level of burden they presented was moderate burden (56%). There was a negative correlation between burden and the child presenting comorbidities, attending daycare or school and the child being in specialized monitoring and the caregiver who does not live with a partner was likely to have a higher level of burden. Conclusions: The presence of congenital heart disease in children is a cause of great physical, social, financial and emotional strain on their primary caregivers. It is unquestionable that there is a link between the family in the care actions provided in health services, especially in outpatient consultations.

Objetivos: Identificar el nivel de sobrecarga de los cuidadores principales de niños con cardiopatías congénitas y analizar los factores asociados. Métodos: Se trata de un estudio transversal exploratorio con abordaje cuantitativo. Participaron de la investigación 100 cuidadores principales de niños con edades entre 0 y 12 años, se utilizó un cuestionario para caracterizar la muestra (cuidadores y niños) y la versión brasileña de la Caregiver Burden Scale (Zarit Burden Interview) para caracterizar la muestra. muestra (cuidadores y niños) evaluar el nivel de sobrecarga. El análisis de los datos se realizó con el programa SPSS 21 y se aplicaron pruebas estadísticas de regresión lineal bivariada y multivariada, además de estadística descriptiva, considerando p<0,05 para la significación. Resultados: El puntaje promedio de carga física, social y emocional de estas madres cuidadoras fue de 34,46 y el nivel de carga que presentaron fue carga moderada (56%). Hubo una correlación negativa entre la sobrecarga y el niño que presentaba comorbilidades, asistía a la guardería oa la escuela y el niño que estaba en seguimiento especializado y el cuidador que no vivía en pareja era probable que tuviera un mayor nivel de sobrecarga. Conclusiones:La presencia de cardiopatías congénitas en los niños es causa de gran desgaste físico, social, económico y emocional en sus cuidadores primarios. Es incuestionable que existe un vínculo entre la familia en las acciones de cuidado que se brindan en los servicios de salud, especialmente en las consultas externas.

Burden, family functioning, and psychological health of older caregivers of older adults: a path analysis / Sobrecarga, funcionalidade familiar e saúde psicológica de idosos cuidadores de idosos: uma path analysis

Objectives: To evaluate an explanatory model of direct and indirect associations regarding the psychological health of older caregivers of functionally dependent older adults. Methods: This is a cross-sectional study performed with older caregivers recruited in contexts of outpatient and home care. We collected information on sociodemographic characteristics, duration of caregiving, physical and cognitive function indicators of the older care recipients, perceived burden, family functioning, and psychological health measures (psychological need satisfaction and depressive symptoms). Results: We evaluated 133 caregivers (76% female, 69.5 ± 6.98 years). Variables that were significantly correlated with psychological health were selected to form an association model to be tested by structural equation modeling via path analysis. Depressive symptom variability was best explained by this model. Caregiver burden remained in the model as a mediator of indirect associations between physical function for instrumental activities of daily living and indicators of family functioning and psychological health. Three associative paths between caregiver burden and depressive symptoms were found ­ one of them was direct and the other two were mediated whether by family functioning or by the level of psychological need satisfaction. Conclusion: Depressive symptoms were the psychological health indicator best explained by the model involving instrumental functional demands that generate burden. Clinical consequences suggested by the model indicate interventions aimed at family functioning and opportunities of psychological need satisfaction as strategies for promoting caregivers' psychological health.

Objetivos: Avaliar um modelo de associações diretas e indiretas explicativo de saúde psicológica de idosos cuidadores de outros idosos funcionalmente dependentes. Metodologia: Estudo transversal realizado com idosos cuidadores recrutados em contexto ambulatorial e de atenção domiciliar. Foram levantadas informações sociodemográficas, tempo de exercício do cuidado, indicadores funcionais físicos e cognitivos dos idosos que recebem os cuidados, percepção de sobrecarga, funcionalidade familiar e medidas de saúde psicológica (satisfação de necessidades psicológicas e sintomatologia depressiva). Resultados: Foram avaliados 133 cuidadores (76% feminino, 69,5 ± 6,98 anos). As variáveis correlacionadas significativamente à saúde psicológica foram escolhidas para a composição do modelo de associações testado por análise de equações estruturais via path analysis. A variabilidade em sintomatologia depressiva foi melhor explicada pelo modelo. Sobrecarga permaneceu no modelo como mediadora das associações indiretas entre funcionalidade física para atividades instrumentais da vida diária e os indicadores de funcionalidade familiar e de saúde psicológica. Três caminhos associativos entre sobrecarga e sintomatologia depressiva foram encontrados ­ um direto e dois mediados, ora pela funcionalidade familiar, ora pelo nível de satisfação de necessidades psicológicas. Conclusão: Sintomatologia depressiva foi o indicador de saúde psicológica mais bem explicado pelo modelo que envolve a presença de demandas funcionais instrumentais geradoras de sobrecarga. Desdobramentos clínicos sugeridos pelo modelo apontam para intervenções com alvo em funcionalidade familiar e de oportunidades de satisfação de necessidades psicológicas como estratégias para promover a saúde psicológica do cuidador.

The impact of the caregiver mobility on child HIV care in the Manhiça District, Southern Mozambique: A clinical based study.

INTRODUCTION: Manhiça District, in Southern Mozambique harbors high HIV prevalence and a long history of migration. To optimize HIV care, we sought to assess how caregiver's mobility impacts children living with HIV (CLHIV)´s continuation in HIV care and to explore the strategies used by caregivers to maintain their CLHIV on antiretroviral treatment (ART). METHODS: A clinic-based cross-sectional survey conducted at the Manhiça District Hospital between December-2017 and February-2018. We enrolled CLHIV with a self-identified migrant caregiver (moved outside of Manhiça District ≤12 months prior to survey) and non-migrant caregiver, matched by the child age and sex. Survey data were linked to CLHIV clinical records from the HIV care and treatment program. RESULTS: Among the 975 CLHIV screened, 285 (29.2%) were excluded due to absence of an adult at the appointment. A total of 232 CLHIV-caregiver pairs were included. Of the 41 (35%) CLHIV migrating with their caregivers, 38 (92.6%) had access to ART at the destination because either the caregivers travelled with it 24 (63%) or it was sent by a family member 14 (36%). Among the 76 (65%) CLHIV who did not migrate with their caregivers, for the purpose of pharmacy visits, 39% were cared by their grandfather/grandmother, 28% by an aunt/uncle and 16% by an adult brother/sister. CLHIV of migrant caregivers had a non-statistically significant increase in the number of previous reported sickness episodes (OR = 1.38, 95%CI: 0.79-2.42; p = 0.257), ART interruptions (OR = 1.73; 95%CI: 0.82-3.63; p = 0.142) and lost-to-follow-up episodes (OR = 1.53; 95%CI: 0.80-2.94; p = 0.193). CONCLUSIONS: Nearly one third of the children attend their HIV care appointments unaccompanied by an adult. The caregiver mobility was not found to significantly affect child's retention on ART. Migrant caregivers adopted strategies such as the transportation of ART to the mobility destination to avoid impact of mobility on the child's HIV care. However this may have implications on ART stability and effectiveness that should be investigated in rural areas.

Sobrecarga del cuidador y distrofia miotónica de Steinert tipo 1 / Caregiver overload and Steinert myotonic dystrophy type 1

Introducción: La distrofia miotónica tipo 1 es la distrofia muscular más frecuente a nivel mundial. Progresa lentamente llevando al paciente a la pérdida de autonomía lo que implica la necesidad del cuidador, quien con frecuencia, también padece la enfermedad. El síndrome de sobrecarga, desgaste o burnout, término en inglés muy utilizado en la bibliografía médica, se ha descrito en los últimos años para los cuidadores y es el desgaste emocional una de sus particularidades. Objetivo: Evaluar la autonomía para la realización de actividades diarias de los pacientes con distrofia miotónica tipo 1 en referencia al tiempo de evolución de la enfermedad y determinar la magnitud de desgaste en los cuidadores. Metodología: Se aplicó la escala de autonomía de Barthel a 29 pacientes y el cuestionario de Maslach a sus cuidadores. Resultados: Se demostró que las mujeres cuidadoras resultaron más afectadas en el intercambio con el enfermo para el cuidado, en la subescala despersonalización del instrumento Maslach (U de Mann-Whitney p = 0,05). Conclusiones: Se sugiere que los cuidadores femeninos son el grupo de mayor riesgo de padecer el síndrome de sobrecarga(AU)

Introduction: Myotonic dystrophy type 1 is the most common muscular dystrophy worldwide. It progresses slowly, depriving patients of their autonomy, which implies the need for a caregiver, who would often suffer from the disease as well. The overload or burnout syndrome, an English term very often found in medical bibliography, has been described for caregivers in recent years, and emotional wear is one of its features. Objective: Evaluate the autonomy to perform activities of daily living of patients with myotonic dystrophy type 1 with reference to the time of evolution of the disease, and determine the extent of wear in caregivers. Methods: A study of a clinical case series was conducted for two years at the Institute of Neurology and Neurosurgery in Havana. Patients were evaluated with the Barthel autonomy scale and caregivers with the Maslach burnout syndrome inventory. Inclusion criteria admitted patients of both sexes clinically and neurophysiologically characterized for this diagnosis. It was also required to obtain the informed consent of patients and caregivers responding to the overload measuring tool. Exclusion criteria left out patients with a dystrophic condition other than Steinert type 1, inconclusive clinical and electromyographic evaluations, or not willing to participate in the study. Results: According to the depersonalization subscale in the Maslach tool (Mann-Whitney U p = 0.05), female caregivers are more often affected by the interaction with the person cared for. Conclusions: Results suggest that female caregivers are under a greater risk of overload syndrome(AU)

Disparity of perception of quality of life between head and neck cancer patients and caregivers.

BACKGROUND: Caregivers are invaluable sources of support for individuals recovering from head and neck cancer (HNC). Accordingly, minimizing caregiver distress is essential to promote the well-being of both caregivers and their patients. This study assessed if psychosocial distress (i.e., anxiety and depression) among HNC caregivers is associated with a difference in how caregivers and their patients perceive patients' quality of life (QOL) after treatment completion. METHODS: Caregivers' and patients' perceptions of patient QOL were assessed using the University of Washington QOL Questionaire (UWQOL), a validated HNC-specific health-related QOL questionnaire. The survey is interpreted in terms of its two composite scores: a physical QOL score and a social-emotional QOL score with higher scores indicating better QOL. Caregiver anxiety was assessed using the Generalized Anxiety Questionaire-7 (GAD-7) and caregiver depression was assessed using the Patient Health Questionaire 8 (PHQ-8). Patients completed the UWQOL as part of clinic intake while caregivers were asked to complete the UWQOL for their patients in addition to the PHQ-8 and GAD-7 in private. Linear regression was used to analyze the association between differences in caregivers' and patients' QOL scores (both social-emotional and physical QOL subscale scores) and GAD-7 and PHQ-8 scores. RESULTS: Of 47 caregivers recruited, 42.6% (n = 20) viewed patients' social-emotional QOL more negatively than patients themselves, while 31.9% viewed patients' physical QOL more negatively. After controlling for covariates, differences in perception of social-emotional QOL (p = .01) and differences in perception of physical QOL (p = .007) were significantly associated with caregiver depression, but not anxiety. Caregivers who disagreed with patients regarding patients' social-emotional QOL scored 6.80 points higher on the PHQ8 than agreeing caregivers. Caregivers who disagreed regarding patients' physical QOL scored 6.09 points higher. CONCLUSION: Caregivers commonly view patients' QOL more negatively than patients themselves. These caregivers tend to have greater psychosocial distress than caregivers who agree with their patients. Interventions designed to identify and aid at-risk caregivers are critically needed. We propose screening for differences in perception of patient QOL as a way of identifying distressed caregivers as well as provider-facilitated communication between patients and caregivers as possible interventions that should be examined in future research.

Experience of symptom control, anxiety and associating factors in a palliative care unit evaluated with Support Team Assessment Schedule Japanese version.

Various physical and psychosocial difficulties including anxiety affect cancer patients. Patient surroundings also have psychological effects on caregiving. Assessing the current status of palliative care intervention, specifically examining anxiety and its associated factors, is important to improve palliative care unit (PCU) patient quality of life (QOL). This study retrospectively assessed 199 patients admitted to a PCU during August 2018-June 2019. Data for symptom control, anxiety level, disease insight, and communication level obtained using Support Team Assessment Schedule Japanese version (STAS-J) were evaluated on admission and after 2 weeks. Palliative Prognostic Index (PPI) and laboratory data were collected at admission. Patient anxiety was significantly severer and more frequent in groups with severer functional impairment (p = 0.003) and those requiring symptom control (p = 0.006). Nevertheless, no relation was found between dyspnea and anxiety (p = 0.135). Patients with edema more frequently experienced anxiety (p = 0.068). Patient survival was significantly shorter when family anxiety was higher after 2 weeks (p = 0.021). Symptoms, edema, and disabilities in daily living correlate with patient anxiety. Dyspnea is associated with anxiety, but its emergence might be attributable mainly to physical factors in this population. Family members might sensitize changes reflecting worsened general conditions earlier than the patients.