Project description:This cross-sectional study assessed the experiences of family caregivers of older adults during the COVID-19 pandemic. Participants were recruited (n = 101) between April and December 2019. We applied a mixed-method approach. Quantitative data were analyzed using an independent samples t-test and logistic regression analysis, and qualitative experiences with modified thematic content analysis. The mean age of the family caregivers was 76 years (SD = 7), and 72% were females. Experiences of loneliness and worry during the pandemic were evaluated by self-assessment. Approximately one-third of the participants reported loneliness and worry. These experiences were further associated with female sex, increased psychological distress and depressive symptoms, and decreased physical condition and social relationships. Family caregivers were also worried about the pandemic's impact on health and well-being. Thus, the COVID-19 pandemic has added an extra psychosocial load to family caregivers. The post-pandemic era requires increased attention to re-evaluating policies and services.
Project description:There is a knowledge gap for implementing tele-rehabilitation (telerehab) after hip fracture. We recently conducted a clinical trial (ClinicalTrials.gov Identifier: NCT02968589) to test a novel online family caregiver-supported rehabilitation program for older adults with hip fracture, called @ctivehip. In this qualitative substudy, our objective was to use semi-structured interviews to explore family caregivers experience with the telerehab program. Twenty-one family caregivers were interviewed between three and six months after the older adults completed @ctivehip. One occupational therapist with research and clinical experience, but not involved in the main trial, conducted and transcribed the interviews. We conducted a multi-step content analysis, and two authors completed one coding cycle and two recoding cycles. Family caregivers who enrolled in @ctivehip were satisfied with the program, stated it was manageable to use, and perceived benefits for older adults' functional recovery after hip fracture. They also suggested improvements for the program content, such as more variety with exercises, and increased monitoring by health professionals. This work extends existing literature and generates research hypotheses for future studies to test telerehab content and program implementation.
Project description:BackgroundLatinos are more likely than non-Latino Whites to develop dementia and be prescribed antipsychotics for dementia-related behavioral symptoms. Antipsychotics have significant risks yet are often overprescribed. Our understanding of how Latino caregivers of Latino older adults living with dementia perceive and address behavioral issues is limited, impeding our ability to address the root causes of antipsychotic overprescribing.MethodsWe interviewed Latino older adults' caregivers and community-based organization workers serving older adults with cognitive impairment (key informants), focusing on the management of behavioral symptoms and experiences with health services.ResultsWe interviewed 8 caregivers and 2 key informants. Caregivers were the spouses, children, or grandchildren of the older adult living with cognitive impairment; their ages ranged from 30 to 95. We identified three categories of how caregivers learned about, managed, and coped with behavioral symptoms: caregivers often faced shortcomings with dementia care in the medical system, receiving limited guidance and support; caregivers found community organizations and senior day centers to be lifelines, as they received relevant, timely advice and support, caregivers often devised their own creative strategies to manage behavioral symptoms.ConclusionIn-depth interviews suggest that the healthcare system is failing to provide support for behavioral symptoms from dementia; caregivers of Latino older adults rely on community organizations instead.
Project description:Background and aimPublic health measures used to mitigate the COVID-19 epidemic may have unintended, detrimental consequences particularly on older adults, whose voices and perspectives are often silent or silenced. The aim of this study was to explore the lived experiences of individuals aged 64 or older during the first COVID-19 lockdown.MethodsWe conducted a qualitative study in a convenience sample of 19 older adults (aged 64+) living at home in the Italian-speaking region of Switzerland during the first COVID-19 lockdown, between April and May 2020. Participants varied in terms of gender, education, age, nationality, and socio-economic status. We conducted semi-structured phone interviews to elicit emotions, expectations and hopes in relation to the present situation, and the post-pandemic world. We inquired about opinions on the enforced public health measures, including those specifically targeting older adults, and on the societal portrayal of older adults.FindingsWe found that the epidemic and the public health response to it had both generated a variety of resentments and a high degree of ambivalence at the individual, micro-, meso- and macro-social levels. We also found that labelling older adults as an at-risk sub-population inevitably contributed to public and self-stigmatization.DiscussionWe conducted an in-depth qualitative investigation of lived experiences of older adults during the first wave of the COVID-19 pandemic in one of the most gravely hit region in Europe. Our findings on the complexity of unintended, detrimental consequences of outbreak responses on older adults have relevant implications for local adaptions of public health measures, and suggest that public health authorities should engage vulnerable sub-populations and promote bi-directional communication to inform and support communities.
Project description:BackgroundSeveral studies have characterized the experiences of family members caring for patients undergoing chemotherapy; however, information about the experiences of older spousal caregivers with intensive caregiving burdens is unclear. Recently, more older patients have been diagnosed with cancer due to the aging population worldwide. Therefore, this study evaluated the patterns in the experiences of older spousal caregivers of patients undergoing palliative chemotherapy for advanced cancer.MethodsQualitative research using semi-structured interviews was used in this study involving 10 older spousal caregivers of patients undergoing palliative chemotherapy at a hospital providing advanced cancer care in Japan. The data obtained were analyzed qualitatively and inductively using thematic analysis by Braun and Clarke.ResultsFour themes were identified from the narratives of the participants in this study. The first theme was "getting used to living with the disease," indicating that the older spouses gradually became accustomed to living with the patient through continued caregiving. The second theme was "deepening view of life and death," indicating that the older spouses' views of life and death were deepened by being confronted with patients' quality of life until death. The third theme was "anxious about the future," indicating the fear regarding the patient's progressive diseases and anxiety pertaining to continuing care for the patient while dealing with their health problems. The final theme was "desire for a better rest of life," indicating that the couple felt their bond was strengthened through caregiving and wishes to live well for the rest of their lives.ConclusionsThe patterns in the experience of older spousal caregivers caring for patients undergoing palliative chemotherapy indicated an aspect of rebuilding their lives as they became accustomed to caregiving, while strengthening their marital bond. The caregiving process involved a mix of emotions, including anxiety about the spousal caregiver's health problems worsening. However, the caregivers recognized the value of their remaining time. Therefore, they had deep concern for the patient's comfort, concealing their feelings so that the patient would feel comfortable. This study can contribute to understanding the challenges faced and support needed by older spousal caregivers.
Project description:Peripheral blood samples were obtained at baseline and at follow-up visit from 20 participants in the Health, Aging and Body Composition prospective cohort study. Genome-wide CpG methylation was assayed using the Illumina Infinium Human MethylationEPIC (HM850K) microarray. We explored longitudinal changes in CpG methylation from blood leukocytes, and likelihood of a future cancer diagnosis.
Project description:BackgroundThe Coronavirus Disease of 2019 (COVID-19) has impacted the health and day-to-day life of individuals, especially the elderly and people with certain pre-existing medical conditions, including cancer. The purpose of this study was to investigate how COVID-19 impacted access to cancer screenings and treatment, by studying the participants in the Multiethnic Cohort (MEC) study.MethodsThe MEC has been following over 215,000 residents of Hawai'i and Los Angeles for the development of cancer and other chronic diseases since 1993-1996. It includes men and women of five racial and ethnic groups: African American, Japanese American, Latino, Native Hawaiian, and White. In 2020, surviving participants were sent an invitation to complete an online survey on the impact of COVID-19 on their daily life activities, including adherence to cancer screening and treatment. Approximately 7,000 MEC participants responded. A cross-sectional analysis was performed to investigate the relationships between the postponement of regular health care visits and cancer screening procedures or treatment with race and ethnicity, age, education, and comorbidity.ResultsWomen with more education, women with lung disease, COPD, or asthma, and women and men diagnosed with cancer in the past 5 years were more likely to postpone any cancer screening test/procedure due to the COVID-19 pandemic. Groups less likely to postpone cancer screening included older women compared to younger women and Japanese American men and women compared to White men and women.ConclusionsThis study revealed specific associations of race/ethnicity, age, education level, and comorbidities with the cancer-related screening and healthcare of MEC participants during the COVID-19 pandemic. Increased monitoring of patients in high-risk groups for cancer and other diseases is of the utmost importance as the chance of undiagnosed cases or poor prognosis is increased as a result of delayed screening and treatment.FundingThis research was partially supported by the Omidyar 'Ohana Foundation and grant U01 CA164973 from the National Cancer Institute.
Project description:ObjectiveTo investigate mental health status and associated factors among caregivers of older adults during the COVID-19 epidemic in China.MethodsFrom March 1 to 31, 2020, 916 caregivers of older adults participated in an online cross-sectional survey on the prevalence of anxiety, depression, and sleep problems. The seven-item Generalized Anxiety Disorder Scale (GAD-7) was administered to measure anxiety symptoms, the two-item Patient Health Questionnaire (PHQ-2) was used to assess depressive symptoms, and a self-developed questionnaire was used to assess sleep quality and duration. Six questions about COVID-19-related experiences were used to assess community-level infection contact and the level of exposure to media information. The prevalence rates of anxiety, depression and sleep problems were computed. The Wald χ2 were applied to compare the differences between subgroups. Multiple logistic regression analyses were performed to investigate factors associated with anxiety, depression, sleep problems, and multimorbidity.ResultsThe prevalence rates of anxiety, depression, and sleep problems were 46.8%, 29.8%, and 10.8%, respectively. Approximately 263 participants (28.7%) presented with two or more mental health problems. Being female (OR, 2.254; 95% CI, 1.510-3.363), having community-level COVID-19 contact (OR, 1.856; 95% CI, 1.189-2.898), and having a mental disorder (OR, 3.610; 95% CI, 1.644-7.930) were associated with increased risk of multimorbidity among caregivers. Caregivers who preferred positive information (OR, 0.652; 95% CI, 0.472-0.899) had reduced risk of multimorbidity.ConclusionAnxiety and depression were common among caregivers of older adults during the COVID-19 epidemic. Being female and having community-level COVID-19 contact were independent risk factors for experiencing multiple mental health problems. Preexisting mental disorders increased the risk of multimorbidity among caregivers, while enhanced access to positive media information decreased the risk of multimorbidity.
Project description:ObjectivesTo understand the impact of the COVID-19 epidemic on asthma control in children based on caregivers' perspectives and experiences.DesignThis was a qualitative study deploying face-to-face, semistructured interviews. Thematic analysis was carried out to analyse the data.SettingPaediatric respiratory clinics in three tertiary hospitals.Participants16 caregivers providing unpaid asthma-related care and assistance to children under 14 years who had been diagnosed with asthma for more than 1 year and were not only treated with short-acting β2-agonists.ResultsSix main themes were identified: (1) improved asthma control; (2) decreased willingness to seek medical care driven by fear; (3) increased adherence due to enhanced awareness of asthma control; (4) coping strategies for changes caused by COVID-19; (5) a new opportunity and (6) managing new challenges in asthma control.ConclusionsThe COVID-19 outbreak and the measures in response to it have had significant impacts on asthma control among children. Children with asthma are advised to continue good asthma management, take their prescribed asthma medications as normal, wash their hands regularly and wear face masks. Regularly supported self-management and remote consultations should be provided during the COVID-19 pandemic. In addition, supporting people financially, providing continued medical support and alleviating any fear and anxiety should be considered. We anticipate that our findings will inform health promotion interventions.
Project description:Individuals diagnosed with developmental disability and mental illness (a "dual diagnosis") contend with multiple challenges and system-related barriers. Using an interpretive description approach, separate qualitative interviews were conducted with adults with a dual diagnosis (n = 7) and their caregiving parents (n = 8) to examine care-related experiences. Results indicate that individuals with a dual diagnosis and their families experience misunderstanding and stigma. Families provide informal complex care amid insufficient and uncoordinated services but are often excluded from formal care planning. A lack of available funding and services further impedes care. While negative care experiences are reported as prevalent, participants also describe instances of beneficial care. Overall, findings indicate a lack of sufficiently targeted resources, leaving families to absorb system-related care gaps. Recommendations include person- and family-centered care, navigation support, and capacity building. Prevention and emergency and crisis care services, along with housing, vocation, and other supports, are needed. Practice and research development regarding life span needs are recommended.