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The impact of heart failure on patients and caregivers: A qualitative study.
McHorney, CA, Mansukhani, SG, Anatchkova, M, Taylor, N, Wirtz, HS, Abbasi, S, Battle, L, Desai, NR, Globe, G
PloS one. 2021;(3):e0248240
Abstract
BACKGROUND Heart failure is rising in prevalence but relatively little is known about the experiences and journey of patients and their caregivers. The goal of this paper is to present the symptom and symptom impact experiences of patients with heart failure and their caregivers. METHODS This was a United States-based study wherein in-person focus groups were conducted. Groups were audio recorded, transcribed and a content-analysis approach was used to analyze the data. RESULTS Ninety participants (64 patients and 26 caregivers) were included in the study. Most patients were female (52.0%) with mean age 59.3 ± 8 years; 55.6% were New York Heart Association Class II. The most commonly reported symptoms were shortness of breath (81.3%), fatigue/tiredness (76.6%), swelling of legs and ankles (57.8%), and trouble sleeping (50.0%). Patients reported reductions in social/family interactions (67.2%), dietary changes (64.1%), and difficulty walking and climbing stairs (56.3%) as the most common adverse disease impacts. Mental-health sequelae were noted as depression and sadness (43.8%), fear of dying (32.8%), and anxiety (32.8%). Caregivers (mean age 55.5 ± 11.2 years and 52.0% female) discussed 33 daily heart failure impacts, with the top three being reductions in social/family interactions (50.0%); being stressed, worried, and fearful (46.2%); and having to monitor their "patience" level (42.3%). CONCLUSIONS There are serious unmet needs in HF for both patients and caregivers. More research is needed to better characterize these needs and the impacts of HF along with the development and evaluation of disease management toolkits that can support patients and their caregivers.
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People living with type 1 diabetes point of view in COVID-19 times (COVIDT1 study): Disease impact, health system pitfalls and lessons for the future.
Tejera-Perez, C, Moreno-Pérez, Ó, Rios, J, Reyes-García, R
Diabetes research and clinical practice. 2021;:108547
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AIMS: To analyse the effects of confinement among people with type 1 diabetes (T1D) and their caregivers over the course of the COVID-19 crisis and to evaluate contemporary changes in medical assistance and patient preferences. METHODS An observational cross-sectional study designed as a self-reported web-based survey was conducted over the course of the COVID-19 pandemic. RESULTS A total of 769 subjects participated in the survey (603 people with T1D and 166 caregivers). Changes in glycaemic control were reported in 66% of cases, weight gain in 40.4% of cases and decreased exercise levels in 65.4% of cases. Of the cohort, 53% maintained contact with the healthcare team, and 23% received specific information related to COVID-19. Emotional support was requested by 17% of respondents. Regarding telemedicine, 97.9% agreed with its use with the following preferences regarding the future: telephone call (84.5%), video-call (60.6%) and platform devices (39.7%). CONCLUSIONS Over the course of the COVID-19 pandemic, at least two-thirds of people with T1D underwent changes in the management of their condition. Almost all participants agreed with the concept of telemedicine, favouring telephone and video calls as their preferred means of communication.
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Resilience Among Caregivers of Injured Service Members: Finding the Strengths in Caregiving.
Dreer, LE, Cox, MK, McBrayer, A, Neumeier, WH, Herman, C, Malone, LA
Archives of physical medicine and rehabilitation. 2019;(4S):S76-S84
Abstract
OBJECTIVE To examine the relationships between caregiver resilience and a comprehensive set of sociodemographic and health-related quality of life (HRQOL) predictors among both caregivers and injured service members. DESIGN Cross-sectional analysis of an observational cohort. SETTING Community dwelling. PARTICIPANTS Caregivers (n=87) who provide instrumental or emotional support to injured service members (n=73)(N=160). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURE The Connor-Davidson Resilience Scale 25-item version. RESULTS Higher caregiver resilience scores were related to lower depressive symptom severity, greater health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management, and problem-solving orientation. A multivariable regression model showed that spiritual growth and aspects of problem-solving orientation were significantly related to resilience. CONCLUSIONS Results highlight the relationships between resilience and spirituality, problem-solving orientation, and aspects of HRQOL among caregivers of injured service members. These findings have important implications for caregiver behavioral health programs designed to promote resilience and draw upon caregiver strengths when taking on a caregiver role. Approaches that include a more integrative medicine or strengths-based emphasis may be particularly beneficial when working with families of injured military.
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Nutrition-Related Practices of Family Child Care Providers and Differences by Ethnicity.
Gans, KM, Tovar, A, Jiang, Q, Mello, J, Dionne, L, Kang, A, Mena, NZ, Palomo, V, Risica, PM
Childhood obesity (Print). 2019;(3):167-184
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BACKGROUND Child care settings play an important role in shaping children's eating behaviors; yet few studies have included family child care homes (FCCHs). We examined provider-reported nutrition-related practices in FCCHs and observed adherence to nutrition guidelines from the Nutrition and Physical Activity Self-Assessment for Child Care (NAP SACC), exploring differences by provider ethnicity. METHODS We assessed baseline data from a cluster-randomized trial, including surveys with FCCH providers and observational data collected at the FCCH. We examined provider-reported nutrition-related practices and if providers met NAP SACC guidelines using observational data. Differences by ethnicity were assessed using chi-square and multivariate log-linear analysis adjusting for education. RESULTS Providers completed a telephone survey (n = 166, 100% female and 72% Hispanic) and participated in 2 full-day observations (n = 119). Many providers reported engaging in positive nutrition-related practices. Significant differences by ethnicity included the following: Hispanic providers less likely to report feeding practices that were responsive to children's self-regulation, but also less likely to report eating and drinking unhealthy foods/beverages in front of children and having screens on during meals and more likely to report seeking nutrition trainings. Using observational data, only 10 of 26 NAP SACC practices were met by >60% of providers. Few ethnic differences in meeting guidelines were found (7 of 26 practices). CONCLUSIONS While providers engage in some positive nutrition practices, improvement is needed to ensure that all providers actually meet evidence-based guidelines. Ethnic differences in certain practices underscore the need for culturally relevant trainings. TRIAL REGISTRATION NUMBER NCT02452645.
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Mood, lifestyle and cardiovascular risk factors among older caregivers of patients with Alzheimer's disease dementia: a case-control study.
Madaleno, TR, Moriguti, JC, Ferriolli, E, De Carlo, MMRP, Lima, NKC
Aging clinical and experimental research. 2019;(11):1609-1614
Abstract
BACKGROUND Caregivers may have a higher risk of cardiovascular diseases and have high rates of anxiety and depression. AIMS The objective of this study was to evaluate mood, lifestyle and the presence of cardiovascular risk factors in older women caregivers of patients with Alzheimer´s disease (AD) dementia compared to non-caregivers living in the neighborhood. METHODS Paired case-control (1:1). Volunteers responded to a questionnaire with information about physical and leisure activities, smoking, alcohol use, and daily hours of care. Blood pressure (BP) was measured on 5 days with the Home Blood Pressure Monitoring (HBPM) system, and mood was assessed with the Geriatric Depression Scale (GDS) and Mini International Neuropsychiatric Interview (MINI). Laboratory testing for cardiovascular risk factors was performed. RESULTS Sixty-two volunteers were evaluated. Total cholesterol levels were higher among caregivers, with an odds ratio (OR) of 3.57 (95% CI 1.2-11, p = 0.03). There was no difference in BP. A positive screening for depression was obtained for 58% of caregivers and for 16% of control subjects (OR = 6.62, 95% CI 1.9-22.6, p < 0.01). The MINI revealed that 38.7% of caregivers had an actual depressive episode as compared to 9.7% of controls (9.7%) (OR = 5.42, 95% CI 1.3-22.7, p = 0.02); 35.5% of caregivers and 6% of controls had a diagnosis of anxiety disorder (OR = 4.79, 95% CI 1.2-19.1, p = 0.03). DISCUSSION The cardiovascular risk markers and lifestyle were similar in caregivers and non-caregivers, but there was a higher prevalence of depression and anxiety among caregivers. CONCLUSIONS Older women caregivers of patients with AD have more mental health symptoms and disorders and need to be treated.
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[Depression and burden in the caretaking of elderly].
Hernández Gómez, MA, Fernández Domínguez, MJ, Blanco Ramos, MA, Alves Pérez, MT, Fernández Domínguez, MJ, Souto Ramos, AI, González Iglesias, MP, Clavería Fontán, A
Revista espanola de salud publica. 2019
Abstract
OBJECTIVE Informal care affects the quality of life and emotional health. Objective: To analyze the relationship between burden and depression in caregivers measured by Zarit's Scale and GHQ-28 and the global functional deterioration of the elderly measured by OARS-MFAQ. METHODS Descriptive observational cross-sectional study in Primary Health Care at Ourense city. 104 people (>65 years old) and their caregivers were interviewed. Descriptive analysis and logistic regression were used to analyze the characteristics that increase the probability to suffer burden and depression. RESULTS 82.7% of caregivers were women with an average age of 63.64 years (95% CI: 61.05-66.23) and 10.3% were over 80 years old. 32.2% had an overload, associated with taking care of younger people (p=0.043), being a couple of an elder (p=0.003) being older (p=0.031) and the risk of depression which were all found as factors associated with burden, measured by GHQ (p<0.001). Having good perception of the vision (p=0.038), rejecting the use of a cane (p=0.002) or wheelchair (p=0.015) were also associated with factors contributing to burden. CONCLUSIONS Informal caregivers are women around their sixties, and although they do not feel overburdened for caring, they have depression, more likely the more severe the burden is, and it is related with the perception of economic deficiencies for the caring.
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The most problematic symptoms of prion disease - an analysis of carer experiences.
Ford, L, Rudge, P, Robinson, K, Collinge, J, Gorham, M, Mead, S
International psychogeriatrics. 2019;(8):1181-1190
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OBJECTIVES Prion diseases are rare dementias that most commonly occur sporadically, but can be inherited or acquired, and for which there is no cure. We sought to understand which prion disease symptoms are most problematic for carers, to inform the development of outcome measures. DESIGN Self-completed questionnaire with follow-up of a subset of participants by structured interview. SETTING A nested study in the UK National Prion Monitoring Cohort, a longitudinal observational study. PARTICIPANTS AND MEASUREMENTS 71 carers, of people with different prion diseases with a wide range of disease severity, identified 236 of their four most problematic symptoms by questionnaire which were grouped into ten domains. Structured interviews were then done to qualitatively explore these experiences. Eleven family carers of people with prion disease were selected, including those representative of a range of demographics and disease subtypes and those who cared for people with prion disease, living or recently deceased. Interviews were transcribed and formally studied. RESULTS The six most problematic symptom domains were: mobility and coordination; mood and behavior; personal care and continence; eating and swallowing; communication; and cognition and memory. The prevalence of these symptoms varied significantly by disease stage and type. A formal analysis of structured interviews to explore these domains is reported. CONCLUSIONS We make suggestions about how healthcare professionals can focus their support for people with prion disease. Clinical trials that aim to generate evidence regarding therapies that might confer meaningful benefits to carers should consider including outcome measures that monitor the symptomatic domains we have identified as problematic.
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Dietary Behaviors and Caregiver Perceptions of Overweight and Obesity among Chinese Preschool Children.
Tang, A, Ji, M, Zhang, Y, Zou, J, Li, M, Yang, L, Lin, Q
International journal of environmental research and public health. 2018;(4)
Abstract
Introduction: Early childhood obesity in China has become a pressing public health concern. A substantial barrier to healthy weight management is poor parental recognition of child overweight. This study examined the relationship between caregiver perceptions of child weight and dietary practices. Methods: A total of 364 children between 2 and 6 years old from six urban preschools in Changsha (China) were included in a cross-sectional study. Information on household demographics, health behaviors, and caregiver attitudes was collected through a self-administered caregiver questionnaire. Chi-squared tests, t-tests, and multivariable logistic regression analysis were used to determine the relationship between caregiver perceptions, dietary behaviors, and child weight status. Results: Over 60% of caregivers with overweight/obese children underestimated their children's weight status. These caregivers were less likely to worry about weight and restrict their children's dietary intakes. Children of caregivers who incorrectly classified their weights were also more likely to have a poor appetite. Caregivers of male children and those from families with incomes between 7000 and 11,000 Ren Min Bi (RMB) were more likely to underestimate weight compared to caregivers with daughters and those from higher income households. Conclusions: Although accurate weight perception may be important for motivating healthy behavioral changes, it may also lead to greater restriction of children's diets, which has been linked to long-term weight gain. Interventions to improve awareness of child overweight should be coupled with efforts that teach caregivers about healthy weight management strategies.
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Indirect Costs and Family Burden of Pediatric Crohn's Disease in the United States.
Kahn, SA, Lin, CW, Ozbay, B, Wang, A, Chao, J, Skup, M
Inflammatory bowel diseases. 2017;(12):2089-2096
Abstract
BACKGROUND Crohn's disease (CD) negatively impacts patient quality of life and results in greater healthcare utilization. For pediatric CD patients, the burden also extends to their caregivers. We aimed to estimate work loss and productivity costs among caregivers of pediatric CD patients. METHODS Data were from Truven MarketScan databases (2000-2012). Patients were <18 years old with ≥2 ICD-9 CD diagnostic codes. Controls were those without CD or ulcerative colitis and were matched to patients by age, Charlson Comorbidity Index, index year, and insurance plan category. Continuous enrollment was required ≥6 months before and ≥12 months after index, defined as the patient's first CD diagnosis date. Outcomes included hours of work loss and associated productivity costs of caregivers 1-year postindex. Work loss and productivity costs were compared between caregivers of patients and controls. Adjustments for unbalanced baseline factors were made using a generalized linear regression model. RESULTS Each cohort included 200 study participants and their caregivers. Unadjusted annual hours of work loss after first diagnosis were 214.4 ± 171.5 and 169.6 ± 157.5 for caregivers of CD patients and controls, respectively (P = 0.007). Annual productivity costs were 27.2% ($1122) higher for caregivers of CD patients than controls, estimated at $5243 and $4,121, respectively (P = 0.004). Adjusted cost analyses yielded similar findings. Over the course of a patient's childhood, accumulated productivity losses were $24,118 for CD patients and $18,957 for control caregivers. CONCLUSIONS Caregivers of pediatric CD patients have significantly higher loss in productivity costs compared with controls.
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Coping with celiac disease: how heavy is the burden for caregivers?
Ferretti, F, Branchi, F, Dell'Osso, B, Conte, D, Elli, L
Revista espanola de enfermedades digestivas. 2017;(4):250-255
Abstract
BACKGROUND Celiac disease (CD) is the most common chronic enteropathy demanding a lifelong gluten-free diet. OBJECTIVE The aim of the study was to identify and estimate the subjective burden of caregivers of celiac patients. METHODS A cross-sectional observational study was conducted during the regional meeting of the Italian Society for the Celiac Disease in April 2014. A written self-administered anonymous questionnaire enquired into caregivers' demographic profile, natural history of patients' disease and caregivers' self-reported degree of burden at the onset of symptoms (T0), at CD diagnosis (T1) and during follow-up (T2). Fifty-five caregivers completed the questionnaire (69% females, 47 ± 13 years old, 73% first-degree relatives). RESULTS The presence of warning symptoms, such as abdominal pain, chronic diarrhea and weight loss was responsible for higher levels of concern. A statistically significant reduction of concern in the follow-up was demonstrated by the comparison of visual analogue scales (VAS) values from T0 to T2 and from T1 to T2 (6.8 ± 3.1 vs 4.2 ± 2.9 and 7.0 ± 2.5 vs 4.2 ± 2.9, respectively; p < 0.001), mirroring the reduction of distress among newly diagnosed individuals. A global impact of gluten-free diet and CD on quality of life was reported in VASs (6.7 ± 2.4). Family (5.4 ± 3.1), social (5.6 ± 2.9) and economic (4.5 ± 3.4) domains were the most associated. CONCLUSION The assessment of caregivers' subjective burden should be considered as an essential step in the evaluation of celiac patients, needing a specific investigation and support.