The Natural History of Disability and Caregiving Before and After Long-Term Care Entry.

Importance: Many older persons move into long-term care facilities (LTCFs) due to disability and insufficient home caregiving options. However, the extent of disability and caregiving provided around the time of entry is unknown. Objective: To quantitatively describe disability and caregiving before and after LTCF entry, comparing nursing home (NH), assisted living (AL), and independent living (IL) entrants. Design, Setting, and Participants: A longitudinal cohort study using prospectively collected annual data from the National Health and Aging Trends Study from 2011 to 2020 including participants in the continental US. Overall, 932 community-dwelling Medicare beneficiaries entering LTCF from 2011 to 2019 were included. Entry into LTCF was set as t = 0, and participant interviews from 4 years before and 2 years after were used. Main Outcomes and Measures: Prevalence of severe disability (severe difficulty or dependence in ≥3 activities of daily living), prevalence of caregivers, and median weekly caregiving hours per entrant, using weighted mixed-effects regression against time as linear spline. Results: At entry, mean (SD) age was 84 (8.4) years, 609 (64%, all percentages survey weighted) were women, 143 (6%) were Black, 29 (3%) were Hispanic, 30 (4%) were other (other race and ethnicity included American Indian, Asian, Native Hawaiian, and other), and 497 (49%) had dementia. 349 (34%) entered NH, 426 (45%) entered AL, and 157 (21%) entered IL. Overall, NH and AL entry were preceded by months of severe disability and escalating caregiving. Before entry, 49% (95% CI, 29%-68%) of NH entrants and 10% (95% CI, 3%-24%) of AL entrants had severe disability. Most (>97%) had at least a caregiver, but only one-third (NH, 33%; 95% CI, 20%-50%; AL, 33%; 95% CI, 24%-44%) had a paid caregiver. Median care was 27 hours weekly (95% CI, 18-40) in NH entrants and 18 (95% CI, 14-24) in AL entrants. On NH and AL entry, severe disability rose to 89% (95% CI, 82%-94%) and 28% (95% CI, 16%-44%) on NH and AL entry and was 66% (95% CI, 55%-75%) 2 years after entry in AL residents. Few IL entrants (<2%) had severe disability and their median care remained less than 7 hours weekly before and after entry. Conclusions: This study found that persons often enter NHs and ALs after months of severe disability and substantial help at home, usually from unpaid caregivers. Assisted living residents move when less disabled, but approach levels of disability similar to NH entrants within 2 years. Data may help clinicians understand when home supports approach a breaking point.

Analysis of the comprehensive needs of primary caregivers of hospitalized colorectal cancer patients and characteristics analysis of high comprehensive needs population.

To identify the care needs of primary caregivers of colorectal cancer (CRC) patients and specify the characteristics of high-needs caregivers. A cross-sectional survey was conducted on the primary caregivers of CRC patients using the Comprehensive Needs Assessment Tool in Cancer Caregivers. The care needs and the characteristics of caregivers with high needs were identified using the Chi-square test and Logistic regression. The results of the survey of 364 primary caregivers of CRC patients showed that the top 2 dimensions of caregiver needs were the healthcare staff and the information dimension. The characteristics of caregivers with high demand for healthcare staff included on-the-job, a family per capita monthly income of <4000 yuan, and the CRC patients they took care of paid medical expenses through self-pay/public expense/rural insurance. The characteristics of caregivers with high information needs included living in the city, on-the-job, a family per capita monthly income of <4000 yuan, and the CRC patients they took care of paid medical expenses through self-pay/public expense/rural insurance. In clinical settings, the information needs of primary caregivers of CRC patients should be given due attention. Particular attention should be paid to the primary caregivers of CRC patients who live in cities, are on-the-job, have a per capita monthly income of <4000 yuan, and pay medical expenses through self-pay/public/rural insurance.

Role of Caregivers in Remote Management of Patients With Type 2 Diabetes Mellitus: Systematic Review of Literature.

BACKGROUND: With the growing use of remote monitoring technologies in the management of patients with type 2 diabetes mellitus (T2DM), caregivers are becoming important resources that can be tapped into to improve patient care. OBJECTIVE: This review aims to summarize the role of caregivers in the remote monitoring of patients with T2DM. METHODS: We performed a systematic review in MEDLINE, Embase, Scopus, PsycINFO, and Web of Science up to 2022. Studies that evaluated the role of caregivers in remote management of adult patients with T2DM were included. Outcomes such as diabetes control, adherence to medication, quality of life, frequency of home glucose monitoring, and health care use were evaluated. RESULTS: Of the 1198 identified citations, 11 articles were included. The majority of studies were conducted in North America (7/11, 64%) and South America (2/11, 18%). The main types of caregivers studied were family or friends (10/11, 91%), while the most common remote monitoring modalities evaluated were interactive voice response (5/11, 45%) and phone consultations (4/11, 36%). With regard to diabetes control, 3 of 6 studies showed improvement in diabetes-related laboratory parameters. A total of 2 studies showed improvements in patients' medication adherence rates and frequency of home glucose monitoring. Studies that evaluated patients' quality of life showed mixed evidence. In 1 study, increased hospitalization rates were noted in the intervention group. CONCLUSIONS: Caregivers may play a role in improving clinical outcomes among patients with T2DM under remote monitoring. Studies on mobile health technologies are lacking to understand their impact on Asian populations and long-term patient outcomes.

Barriers and facilitators to integrating depression care in tuberculosis services in South Asia: a multi-country qualitative study.

BACKGROUND: Depression is common among people with tuberculosis (TB). The condition is typically unrecognised or untreated despite available and effective treatments in most low- and middle-income countries. TB services in these countries are relatively well established, offering a potential opportunity to deliver integrated depression screening and care. However, there is limited evidence on how such integration could be achieved. This study aimed to understand the barriers and facilitators to integrate depression care in TB services. METHODS: We conducted nine workshops with 76 study participants, including people with TB, their carers, and health service providers in Bangladesh, India, and Pakistan, seeking views on integrating depression care into TB clinics. We used a deductive thematic approach to analyse the translated transcripts of audio recordings, contemporaneous notes made during workshops for Bangladesh and India and workshop reports for Pakistan. Using the SURE (Supporting the Use of Research Evidence) thematic framework, we extracted and categorised barriers and facilitators into various domains. RESULTS: Reported barriers to integrating depression care in TB services included lack of knowledge about depression amongst patients and the staff, financial burden, and associated stigma for people with TB and their carers. Government buy-in and understanding of how to identify and screen for depression screening were potential facilitators reported. Additionally, breaking through mental health stigma and providing the additional resources required to deliver this service (human resources and consultation time) were essential for integrating depression and TB care. CONCLUSIONS: Depression is a common condition found among people with TB, requiring early identification among people with TB. Integrating depression care into Tb services by health workers requires the availability of political support and the provision of resources.

Play into the domestic routine to promote child development: cross-sectional study.

OBJECTIVE: To analyze the association between the incorporation of play into the domestic routine of caregivers, and the child development of children under their care. METHOD: Cross-sectional study conducted with 129 caregiver-child dyads aged 12-23 months, living in the southern region of São Paulo. Child development was assessed using the Ages & Stages Questionnaire-3, and the incorporation of play into the domestic through a questionnaire and filming of the dyads in activities related to the domestic routine. RESULTS: Almost all the caregivers were the mother (98%), who, when answering the questionnaire, reported incorporating play into their domestic routine (93%), however in the video, only one third played with the child (34%). There was a positive association between playing in moments of domestic routine and domains of child development in children aged 18 months or less. CONCLUSIONS: A positive association was found between the incorporation of play into the domestic routine and child development.

Informal Caregivers' Perceptions of Facilitators of Successful Weight Management for People With Spinal Cord Injury.

IMPORTANCE: Informal caregivers have valuable insights that occupational therapists can use to prevent and manage problems that may arise in people with spinal cord injury (SCI) because of a lack of physical activity and poor nutrition. OBJECTIVE: To assess caregiver-identified facilitators of weight management in people with SCI. DESIGN: Descriptive qualitative design using semistructured interviews and thematic analysis. SETTING: Regional SCI Care Model System and Veterans Health Administration. PARTICIPANTS: Informal caregivers (n = 24) of people with SCI. OUTCOMES AND MEASURES: Facilitators of successful weight management in care recipients with SCI. RESULTS: Four themes were identified as weight management facilitators: healthy eating (subthemes: food content, self-control, self-management, and healthy preinjury lifestyle), exercise and therapy (subthemes: occupational and physical therapy, receiving assistance, and resources for exercise), accessibility, and leisure activity or activities of daily living, the latter described as a source of activity (because of required energy expenditure) to facilitate weight management for people with more severe injuries. CONCLUSIONS AND RELEVANCE: These findings can inform the development of successful weight management plans by occupational therapists by incorporating feedback from informal caregivers. Because caregivers are involved in many of the facilitators identified, occupational therapists should communicate with the dyad about sourcing accessible places to increase physical activity and assessing in-person assistance and assistive technology needs to promote healthy eating and physical activity. Occupational therapists can use informal caregiver-identified facilitators of weight management to help prevent and manage problems for people with SCI secondary to limited activity and poor nutrition. What This Article Adds: Occupational therapy practitioners provide therapeutic intervention to people with SCI; this includes attention to weight management from the time of initial injury throughout their lives. This article is novel in the presentation of informal caregivers' perceptions about successful facilitators of weight management among people with SCI, which is important because caregivers are intimately involved in the daily activities of people with SCI and can be a liaison for occupational therapists and other health care providers about ways to facilitate healthy eating and physical activity.

Racial and Ethnic Disparities in Chronic Stress among Male Caregivers.

Whereas research on caregiving is well documented, less is known about gender inequalities in caregiver stress, coping mechanisms, and health outcomes, all of which may vary by race, ethnicity, and socioeconomic status. This scoping review investigated racial and ethnic disparities using the Stress Process Model among male caregivers. Several databases were searched including Academic Search Premier, Medline Complete, APA PsycInfo, CINHAL, Google, ProQuest, and Web of Science. Included were peer-reviewed articles in English, published from 1990 to 2022. A total of nine articles fulfilled inclusion criteria. Most of the articles indicated that compared to White male caregivers, African American male caregivers provided more hours of care, assisted with more activities of daily living (ADLs) and instrumental activities of daily living (IADLs), and experienced more financial stress. In terms of coping style, one study found African American male caregivers, compared to White male caregivers, held negative religious beliefs. Another study showed that they were at a higher risk for stroke than their White counterparts. The search revealed a dearth of studies on racial disparities in stress, coping, and health outcomes among male caregivers. Further research is needed on the experiences and perspectives of male minority caregivers.

Qualitative study on the use of emergency services by people with serious mental disorder in Spain.

BACKGROUND: The population with severe mental disorders (SMD) is a frequent user of emergency services. Situations of psychiatric decompensation can have devastating consequence and can cause problems in getting urgent medical care. The objective was to study the experiences and needs of these patients and their caregivers regarding the demand for emergency care in Spain. METHODS: Qualitative methodology involving patients with SMD and their informal caregivers. Purposive sampling by key informants in urban and rural areas. Paired interviews were carried out until data saturation. A discourse analysis was conducted, obtaining a codification in categories by means of triangulation. RESULTS: Forty-two participants in twenty-one paired interviews (19 ± 7.2 min as mean duration). Three categories were identified. 1º Reasons for urgent care: poor self-care and lack of social support, as well as difficulties in accessibility and continuity of care in other healthcare settings. 2º Urgent care provision: trust in the healthcare professional and the information patients receive from the healthcare system is crucial, telephone assistance can be a very useful resource. 3º Satisfaction with the urgent care received: they request priority care without delays and in areas separated from the other patients, as well as the genuine interest of the professional who attends them. CONCLUSIONS: The request for urgent care in patients with SMD depends on different psychosocial determinants and not only on the severity of the symptoms. There is a demand for care that is differentiated from the other patients in the emergency department. The increase in social networks and alternative systems of care would avoid overuse of the emergency departments.

Safety Concerns for Persons with Dementia in Senior Housing: A Qualitative Study with Korean American Caregivers in Los Angeles.

Subsidized senior housing helps many socioeconomically disadvantaged older adults pursue independent living and aging in place. However, cognitive impairment or dementia poses a critical challenge to many residents' ability to live independently and safely. Focusing on Korean American dementia caregivers, a group known to be vulnerable to caregiving burden but understudied, we explored the safety of persons with dementia in senior housing from the perspectives of caregivers. Qualitative data from nine caregivers whose care recipients were current or former residents of subsidized senior housing in Los Angeles were analyzed by the constant comparative method. Major concerns emerged were: (1) fire risks, (2) wandering, (3) physical injury (e.g., self-harm, falls), and (4) potential neglect. Caregivers also mentioned errors in the self-administration of medications, potential financial exploitation, and interpersonal conflicts. These concerns provide implications for services and programs for the safety of persons with dementia who live in senior housing.

Conocimientos y habilidades del cuidador familiar del adulto mayor con demencia / Knowledge and skills of the family caregiver of the elderly adult with dementia

Introducción: la demencia es la alteración cognitiva con mayor incidencia. Provoca una disminución de las capacidades físicas y mentales. Las habilidades y conocimientos del cuidador familiar tienen un papel importante para entender las necesidades, fortalezas y limitaciones en el cuidado. Objetivo: establecer la relación entre los conocimientos y las habilidades en cuidados del cuidador familiar del adulto mayor con demencia. Metodología: estudio cuantitativo, transversal, prospectivo y con alcance correlacional. Muestra no aleatoria por disponibilidad de 26 cuidadores. Se aplicó la Escala de conocimientos sobre demencia DKAT2-sp con alfa de Cronbach de 0.79 y el Inventario de habilidad de cuidado-CAI con alfa de Cronbach de 0.84. Resultados: el género predominante fue el femenino. Los resultados de la prueba Rho de Spearman (p = 0.149) comprobaron que no existe relación y mostraron un nivel de significación mayor que lo esperado entre el conocimiento y la habilidad. Los familiares de personas con demencia cumplen con otros roles diferentes, además de que no reciben capacitación; tienen conocimientos altos y moderados con habilidades de cuidado medias y altas. Conclusión: los niveles de habilidad y conocimiento no son insuficientes; no existe una relación entre las variables de estudio.

Introduction: Dementia is the cognitive disorder with the higher incidence. It causes a decrease in physical and mental abilities. The skills and knowledge of the family caregiver comprise an important role in understanding the needs, strengths and limitations in care. Objective: To establish the relationship between knowledge and skills of the family caregiver of the elderly with dementia. Methodology: Study with a quantitative, cross-sectional, prospective approach and correlational scope. Non-random sample due to availability of 26 caregivers. The DKAT2-sp Dementia Knowledge Scale (with 0.79 Cronbach's alpha) and the Care Skills Inventory-CAI instrument (0.84 Cronbach's alpha) were applied. Results: The predominant gender was female. The results of the Spearman's Rho test (p = 0.149) confirmed that there is no relationship, showing a higher level of significance than expected between knowledge and ability. Family members of people with dementia fulfill other different roles, in addition to not receiving training; they have high and moderate knowledge with medium and high care skills. Conclusion: The skill and knowledge levels are not insufficient, demonstrating that there is no relationship between the variables.

Perceived COVID-19 risk and testing experiences in the San Ysidro U.S./Mexico border region.

Racial and ethnic disparities in COVID-19 incidence are pronounced in underserved U.S./Mexico border communities. Working and living environments in these communities can lead to increased risk of COVID-19 infection and transmission, and this increased risk is exacerbated by lack of access to testing. As part of designing a community and culturally tailored COVID-19 testing program, we surveyed community members in the San Ysidro border region. The purpose of our study was to characterize knowledge, attitudes, and beliefs of prenatal patients, prenatal caregivers, and pediatric caregivers at a Federally Qualified Health Center (FHQC) in the San Ysidro region regarding perceived risk of COVID-19 infection and access to testing. A cross-sectional survey was used to collect information on experiences accessing COVID-19 testing and perceived risk of COVID-19 infection within San Ysidro between December 29, 2020 and April 2, 2021. A total of 179 surveys were analyzed. Most participants identified as female (85%) and as Mexican/Mexican American (75%). Over half (56%) were between the age of 25 and 34 years old. Perceived Risk: 37% reported moderate to high risk of COVID-19 infection, whereas 50% reported their risk low to none. Testing Experience: Approximately 68% reported previously being tested for COVID-19. Among those tested, 97% reported having very easy or easy access to testing. Reasons for not testing included limited appointment availability, cost, not feeling sick, and concern about risk of infection while at a testing facility. This study is an important first step to understand the COVID-19 risk perceptions and testing access among patients and community members living near the U.S./Mexico border in San Ysidro, California.

COVID-19 testing strategies that fail to incorporate culturally competent methods to reach traditionally underserved communities can lead to persistent transmission and increased infection rates. During the early stages of the COVID-19 pandemic, we surveyed 179 people living in a community with high burden of COVID-19 infection about their perception of infection risk and their experiences accessing testing. Capturing and understanding these community perceptions on COVID-19 risk are vital when developing a testing program that is accessible and appropriate for the target population. In our study, we found half of survey respondents thought their risk of COVID-19 infection as low to none and over half of respondents stated they had already been tested for COVID-19. These findings provide insight to the beliefs of individuals who live and seek health care in communities with high rates of COVID-19 infection and will help guide the design and implementation of culturally tailored testing strategies.

Diverse demands and resources among racially/ethnically diverse caregivers.

OBJECTIVES: The family caregiver population in the US is growing in conjunction with greater numbers of older adults with serious illness and complex care needs, and is becoming increasingly diverse. This study described and compared resources, demands, and health outcomes among diverse family caregivers by race/ethnicity. DESIGN: This study was a cross-sectional secondary analysis of nationally representative data collected for Black/African-American, Asian American & Pacific Islander, Latino/Hispanic and non-Latino/Hispanic white caregivers (n = 2,010) in the Home Alone Revisited Study. We described available resources (e.g. income, paid help, social support) and demands (e.g. medical/nursing task performance) by racial/ethnic group. Using survey-weighted logistic regression, we examined relationships of resources and demands with caregiver outcomes (i.e. heath status; strain; depressive symptoms) by race-ethnicity controlling for socio-demographic variables. RESULTS: Distribution of resources and demands was similar by race/ethnicity, except for higher income for non-Latino/Hispanic white caregivers. Nearly half assisted with personal care (47.5%) or medical/nursing tasks (49.7%). Higher social support and satisfaction with social relationships was associated with positive health outcomes regardless of race/ethnicity, while income was consistently associated with positive health outcomes only for non-Latino/Hispanic white caregivers. Medical/nursing task performance was significantly associated with negative health outcomes for Asian American & Pacific Islanders in multivariable models. DISCUSSION: Many caregiving demands and tasks are similar by race/ethnicity and represent considerable investment of time, energy and care. Differences in the effects of resources and demands by race/ethnicity should be explored in future research as they may have implications for assessment and planning of culturally and linguistically appropriate interventions.

Asociación entre sobrecarga del cuidador y presencia de alteraciones neurológicas en una población geriátrica peruana / Association between caregiver burden and the presence of neurological alterations in a Peruvian geriatric population

Objetivo: El objetivo del presente estudio es establecer la asociación entre cuidar adultos mayores con alteración neurológica y padecer sobrecarga del cuidador en el Centro Geriátrico Naval del Perú, desde noviembre del 2019 a enero del 2021. Metodología: Estudio analítico, observacional, tipo transversal realizado en el Centro Geriátrico del Centro Médico Naval. Se encuestaron 290 cuidadores que acudieron a consulta del adulto mayor cuidado. La sobrecarga del cuidador se midió con la escala de sobrecarga de Zarit. Resultados: Se halló una prevalencia de sobrecarga del cuidador del 52,76%. Los pacientes que padecían de alguna alteración neurológica fueron el 62,76%. Al ajustar por las variables sociodemográficas, ser cónyuge del paciente aumentó en 2,23 veces la probabilidad de padecer sobrecarga del cuidador. Al ajustar por las variables relacionadas con el cuidado, cuidar de un paciente con alteración neurológica y cuidar de un adulto mayor durante 1 o 2 años aumentaron en 1,86 y 1,91 veces, respectivamente, la probabilidad de padecer sobrecarga del cuidador, mientras que contar con el apoyo de otras personas disminuyó la probabilidad de padecerla en un 39%. Conclusiones: La sobrecarga del cuidador se encuentra asociada con cuidar de un adulto mayor con alteración neurológica, ser cónyuge del paciente, realizar el cuidado durante 1 o 2 años y contar con apoyo de otras personas (AU)

Objective: The objective of this study is to establish the association between caring for older adults with neurological disorders and suffering from caregiver burden at the Naval Geriatric Center of Peru, from November 2019 to January 2021. Methodology: Analytical, observational, cross-sectional study carried out at the Geriatric Center of the Naval Medical Center. A total of 290 older adult’s caregivers who went to medical consultation were surveyed. Caregiver burden was measured with the Zarit burden scale. Results: A prevalence of caregiver burden of 52.76% was found. The patients that suffered some neurological alteration were 62.76%. When adjusting for sociodemographic variables, being the patient’s spouse increased the probability of suffering from caregiver burden by 2.23 times. When adjusting for the variables related to care, caring for a patient with neurological disorder and caring for an older adult for 1 or 2 years increased the probability of suffering caregiver burden by 1.86 and 1.91 times, respectively, while having the support of other people decreased the probability of suffering it by 39%. Conclusions: Caregiver overload is associated with caring for an older adult with neurological disorder, being the patient’s spouse, caring for 1 or 2 years and having the support of other people (AU)

"I need to be alert at night to provide care": Factors associated with problematic sleep among young Australian caregivers.

OBJECTIVES: There is increased recognition that young people (<25 years) may occupy a carer role for family or others with health conditions or disability. This is often in addition to study and social activities. This means competing demands on time, and insufficient sleep. Our aim was to determine the contribution of caring duties to problematic sleep in young carers. METHODS: A survey of Australian carers was conducted, including questions on demographics, characteristics of the carer and care recipient, and sleep quality and quantity. Participants were eligible if they reported sleep time <7 hr or dissatisfaction with their sleep, and were aged 15-24 years. RESULTS: A total of 110 participants (71.8%_female = 79, 15-17 years = 62, 18-24 years = 48) were included in analysis; 55.5% (n= 61) reporting dissatisfaction with their sleep and 62.7% (n= 69) reporting typically less than 7 hr sleep per night. Sleep duration was significantly shorter for those who reported 1-2 or ≥3 awakenings to provide care, compared with no awakenings (p_< .05). Sleep quality, as described by scores on the Pittsburgh Sleep Quality Index (PSQI) was also significantly worse for those who were frequently awoken by their care recipient (p < .05). Worrying about the care recipient, being woken by the care recipient, and listening out for the care recipient were the most frequently identified factors impacting on sleep. CONCLUSION: Young carers experience reduced sleep duration and poor sleep quality. Strategies to alleviate the burden of care work on young carer's sleep would benefit the health and safety of this group.

Psychosocial Impact of the COVID-19 Pandemic in Racially/Ethnically Diverse Youth With Diabetes.

OBJECTIVE: This study examined caregiver perceived impact of the Coronavirus Disease 2019 (COVID-19) pandemic on a diverse sample of U.S. youth with diabetes and their families. METHODS: Caregivers of youth with diabetes completed an electronic survey in English or Spanish at two sites. Participants provided demographic and disease characteristics and completed the COVID-19 Exposure and Family Impact Scales (CEFIS). Glycemic health was assessed via Hemoglobin A1c (HbA1c) from medical chart review. Analysis of variance and analyses of covariance were utilized to examine racial/ethnic differences in glycemic health and in COVID-19 Exposure, Impact, and Distress scales. Hierarchical linear regression was conducted to predict HbA1c. Thematic analysis was conducted on open-ended responses regarding the effects of COVID-19 on youth and families' overall and diabetes-related well-being. RESULTS: Caregivers (n = 114) of youth with diabetes (M = 12.6 ± 3.5 years) completed study measures. Mean HbA1c for Non-Hispanic White youth was lowest and significantly different from Hispanic and Non-Hispanic Black youth. Exposure to COVID-19 stressors differed by race/ethnicity (p < .05) with Hispanic caregivers reporting greatest exposure. CEFIS scales did not predict HbA1c after controlling for demographic/disease variables. Caregivers described child/family changes during COVID (e.g., more time together, health-related hypervigilance), as well as differences in diabetes management during COVID-19. CONCLUSIONS: Findings indicate differences in COVID-19 exposure but did not demonstrate other racial/ethnic disparities in COVID-19 impact or distress. Household income was the most important predictor of glycemic health. Addressing structural inequalities experienced by youth with diabetes and their families is critical. Recommendations to support families with diabetes are made.

Perceptions of Death Among Patients with Advanced Cancer Receiving Early Palliative Care and Their Caregivers: Results from a Mixed-Method Analysis.

BACKGROUND: Oncologists are often concerned that talking about death with patients may hinder their relationship. However, the views of death held by patients have not been thoroughly investigated. This study aimed to describe the perception of death among patients with advanced cancer receiving early palliative care (EPC) and their caregivers. MATERIAL AND METHODS: Qualitative and quantitative analyses were performed on 2 databases: (a) transcripts of open-ended questionnaires administered to 130 cancer patients receiving EPC with a mean age of 68.4 years and to 115 primary caregivers of patients on EPC with a mean age of 56.8; (b) texts collected from an Italian forum, containing instances of web-mediated interactions between patients and their caregivers. RESULTS: Quantitative analysis shows that: (a) patients and caregivers are not afraid of speaking about death; (b) patients and caregivers on EPC use the word "death" significantly more than patients on standard oncology care (SOC) and their caregivers (P < .0001). For both participants on EPC and SOC, the adjectives and verbs associated with the word "death" have positive connotations; however, these associations are significantly more frequent for participants on EPC (verbs, Ps < .0001; adjectives, Ps < .003). Qualitative analysis reveals that these positive connotations refer to an actual, positive experience of the end of life in the EPC group and a wish or a negated event in the SOC group. CONCLUSIONS: EPC interventions, along with proper physician-patient communication, may be associated with an increased acceptance of death in patients with advanced cancer and their caregivers.

Influência da sobrecarga, estresse e sintomas depressivos na saúde de idosos cuidadores: estudo longitudinal / Influencia de la carga, el estrés y los síntomas depresivos en la salud de los cuidadores de personas mayores: un estudio longitudinal / Influence of burden, stress and depressive symptoms on the health of older adult caregivers: a longitudinal study

Resumo Objetivo analisar o efeito da sobrecarga, do estresse e dos sintomas depressivos sobre as características de saúde de idosos cuidadores de idosos. Métodos estudo quantitativo e longitudinal com 127 idosos cuidadores. As variáveis utilizadas foram caracterização de saúde; sobrecarga; sintomas depressivos e estresse. Realizou-se modelo de regressão linear, teste de Poisson, com nível de significância de 5%. Resultados observou-se que um ponto a mais no escore na escala de sobrecarga aumenta em 0,030 o número de doenças (p=0,020) e risco de dor crônica (p=0,005); um ponto a mais no escore na escala de estresse aumenta em 0,058 o número de doenças (p=0,001) e risco para avaliação de saúde regular/ruim (p=<0,001) e dor crônica (p=<0,001); o aumento no escore na escala de sintomas depressivos aumenta o número de doenças (p=<0,001), risco de quedas (p=0,009), avaliação de saúde regular/ruim (p=<0,001) e dor crônica (p=<0,001). Conclusões e implicações para a prática estimativa de piora nos escores das variáveis psicológicas acarreta um risco para o agravamento de características de saúde física dos cuidadores. Com os resultados encontrados, observar-se a necessidade da criação de políticas públicas para os idosos cuidadores, a fim de propiciar uma melhor qualidade de vida.

Resumen Objetivo analizar el efecto de la sobrecarga, el estrés y los síntomas depresivos sobre las características de salud de los cuidadores de ancianos. Métodos estudio cuantitativo y longitudinal con 127 cuidadores de ancianos. Las variables utilizadas fueron caracterización de la salud; sobrecarga; Síntomas depresivos y estrés. Se realizó un modelo de regresión lineal, prueba de Poisson, con un nivel de significancia del 5%. Resultados se observó que un punto más en la puntuación de la escala de sobrecarga aumenta en 0,030 el número de enfermedades (p=0,020) y el riesgo de dolor crónico (p=0,005); un punto más en la puntuación de la escala de estrés aumenta en 0,058 el número de enfermedades (p=0,001) y el riesgo de evaluar regular/mala salud (p=<0,001) y dolor crónico (p=<0,001); el aumento de la puntuación en la escala de síntomas depresivos aumenta el número de enfermedades (p=<0,001), riesgo de caídas (p=0,009), valoración regular/mala de la salud (p=<0,001) y dolor crónico (p=<0,001). Conclusiones e implicaciones para la práctica la estimación del empeoramiento de las puntuaciones de las variables psicológicas conlleva un riesgo de empeoramiento de las características de salud física de los cuidadores. Con los resultados encontrados, se evidencia la necesidad de crear políticas públicas para los cuidadores de adultos mayores, con el fin de brindarles una mejor calidad de vida.

Abstract Objective to analyze the effect of burden, stress, and depressive symptoms on the health characteristics of older adult caregivers of older adults. Method A quantitative and longitudinal study was conducted with 127 older adult caregivers to analyze the effect of burden, stress, and depressive symptoms on their health characteristics. The variables assessed included health characterization, burden, depressive symptoms, and stress. A linear regression model and Poisson test were employed, with a significance level set at 5%. Results The findings revealed that an increase of one point in the burden scale score was associated with a 0.030 increase in the number of diseases (p=0.020) and an increased risk of chronic pain (p=0.005). Similarly, a one-point increase in the stress scale score was associated with a 0.058 increase in the number of diseases (p=0.001), as well as an increased risk of a poor subjective health assessment (p=<0.001) and chronic pain (p=<0.001). Furthermore, an increase in the score on the depressive symptoms scale was associated with an increase in the number of diseases (p=<0.001), risk of falls (p=0.009), poor subjective health assessment (p=<0.001), and chronic pain (p=<0.001). Conclusions and implications for practice The worsening estimate in the scores of psychological variables poses a risk to the deterioration of caregivers' physical health characteristics. The findings underscore the need for the development of public policies aimed at improving the quality of life for older adult caregivers.

Perfil de cuidadores de idosos dependentes em contexto de pandemia: impactos na saúde e no trabalho de quem cuida em Portugal / Profile of caregivers of dependent elderly in a pandemic context: impacts on the health and work of caregivers in Portugal / Perfil de los cuidadores de personas mayores dependientes en un contexto de pandemia: impactos en la salud y el trabajo de los cuidadores en Portugal

Objetivo: conhecer o perfil dos cuidadores formais e informais de idosos com dependência funcional em Portugal. Método: inquérito online realizado em junho-novembro 2021 pela Escola Nacional de Saúde Pública-NOVA de Lisboa. O questionário foi divulgado em redes sociais e em instituições que atuam nos cuidados a idosos dependentes. Protocolo aprovado pela Comissão de Ética da ENSP. Resultados: o sexo feminino prevaleceu (91,4% cuidadoras formais e 88% informais). Predominou o nível superior de escolaridade em ambas as categorias. Os cuidadores formais situavam-se numa faixa etária mais jovem que os cuidadores familiares. 51% dos cuidadores formais e 63,7% dos cuidadores informais relataram sofrer algum problema crônico de coluna. Os sentimentos de isolamento, tristeza e depressão predominaram entre os cuidadores formais e informais. Conclusão: o trabalho de cuidar é predominantemente feminino e a pandemia de Covid 19 trouxe impactos importantes para a saúde dos cuidadores, em especial para a saúde mental.

Objective: to know the profile of formal and informal caregivers of the elderly with functional dependence in Portugal. Method: online survey conducted in June-November 2021 by the National School of Public Health-NOVA of Lisbon. The questionnaire was published on social networks and in institutions that work in the care of dependent elderly. Protocol approved by the Ethics Committee of the School. Results: females prevailed (91.4% formal and 88% informal caregivers). Higher education level predominated in both categories. Formal caregivers were in a younger age group than family caregivers. 51% of formal caregivers and 63.7% of informal caregivers reported suffering from a chronic back problem. Feelings of isolation, sadness and depression predominated among formal and informal caregivers. Conclusion: caring work is predominantly female and the Covid 19 pandemic has had important impacts on the health of caregivers, especially mental health.

Objetivo: conocer el perfil de los cuidadores formales e informales de ancianos con dependencia funcional en Portugal. Método: encuesta online realizada en junio-noviembre de 2021 por la Escuela Nacional de Salud Pública-NOVA de Lisboa. El cuestionario fue difundido en redes sociales y en instituciones que trabajan en el cuidado de ancianos dependientes. Protocolo aprobado por el Comité de Ética de la Escuela. Resultados: predominó el sexo femenino (91,4% cuidadoras formales y 88% informales). El nivel de educación superior predominó en ambas categorías. Los cuidadores formales estaban en un grupo de edad más joven que los cuidadores familiares. El 51% de los cuidadores formales y el 63,7% de los cuidadores informales reportaron padecer un problema crónico de espalda. Los sentimientos de aislamiento, tristeza y depresión predominaron entre los cuidadores formales e informales.Conclusión: el trabajo de cuidado es predominantemente femenino y la pandemia de Covid 19 ha tenido impactos importantes en la salud de los cuidadores, especialmente en la salud mental.

Screen viewing practices and caregivers' knowledge of the health-related effects in children and adolescents in a Nigerian Urban City.

Background: Globally, a dramatic increase in the use of television and digital media has been observed among children and adolescents in recent times. The possible health-related effects of frequent and prolonged screen media viewing on these children and adolescents have triggered many concerns among researchers. Aim: The study is aimed to determine the screen media viewing practices and caregivers' level of knowledge about the health-related effects of prolonged screen viewing time on their children. This was a descriptive cross-sectional study among caregiver/child and adolescent dyads on outpatient clinic visits. Subjects and Methods: Respondents (caregivers/children's pairs) were consecutively recruited, and data was obtained using an unambiguous pre-tested semi-structured questionnaire comprising four domains: socio demographic characteristics; screen media viewing characteristics, perception of the health related effects of prolonged viewing time, and measures to limit prolonged screen viewing time in children. Descriptive and inferential statistics were done using Statistical Package for Social Sciences (SPSS) version 22.0 at a level of statistical significance P < 0.05. Results: Of the 205 respondents studied, the majority (67.8%, fathers and 76.1%, mothers) had tertiary education. The daily mean time spent by children watching television/screen media was 2 (± 1.58) hours. Up to 89.3% of the caregivers established good standards for healthy screen-viewing in their homes. However, 52.7% of them had poor knowledge of the health-related problems of increased viewing time. Socio-economic class (P = 0.002) and knowledge level of the parents (P = 0.000) were significant predictors limiting children's screen-viewing time. Conclusion: Increasing screen media viewing is common among the children studied. The majority of the caregivers had poor knowledge of health-related effects of prolonged viewing time despite high educational attainment. There is a need to enlighten caregivers on the possible health effects of excess screen media viewing so as to enable them to institute stringent measures to limit the attendant health consequences on the children.