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The Online Support Group as a Community: A Thematic Content Analysis of an Online Support Group for Idiopathic Subglottic Stenosis.
Haik D, Kashanchi K, Tajran S, Heilbronn C, Anderson C, Francis DO, Gelbard A, Verma SP
(2019) Ann Otol Rhinol Laryngol 128: 293-299
MeSH Terms: Access to Information, Disease Management, Emotions, Female, Global Health, Humans, Information Dissemination, Internet, Laryngostenosis, Male, Psychosocial Support Systems, Self-Help Groups
Show Abstract · Added July 30, 2020
OBJECTIVE: - Idiopathic subglottic stenosis (iSGS) is a rare disease with few local resources for individuals to use. With the explosive growth of online social networking, platforms such as Facebook possess compelling potential to facilitate user-driven sharing of health information and peer support. This study was performed to better understand the content shared in a busy online community for individuals with iSGS.
METHODS: - The largest online community (OC) for individuals with iSGS, Living With Idiopathic Subglottic Stenosis (LwiSGS), was examined. A thematic content analysis of the communications shared in February of 2018 was performed. A conventional qualitative analysis model was employed to analyze aggregated data. The data were then codified.
RESULTS: - Analysis demonstrated that communications primarily encompassed three major thematic elements: (1) information sharing; (2) emotional support, expression, and experience sharing; and (3) community building. Positively toned posts grossly overshadowed negatively toned posts by almost a factor of 3. A significant portion of group members requested information from their peers, suggesting a high level of trust toward the resources provided in this group, even those involving a surgical procedure or medication.
CONCLUSION: - LwiSGS is a forum for patients with a rare chronic condition to share informational resources, personal experiences, and emotional support, as well as a community with their peers. These data suggest that LwiSGS could be a powerful resource for individuals with iSGS to share information, personal experiences, or emotional support.
0 Communities
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MeSH Terms
Predictors of recurrence in remitted late-life depression.
Deng Y, McQuoid DR, Potter GG, Steffens DC, Albert K, Riddle M, Beyer JL, Taylor WD
(2018) Depress Anxiety 35: 658-667
MeSH Terms: Activities of Daily Living, Age of Onset, Aged, Antidepressive Agents, Brain, Comorbidity, Depressive Disorder, Major, Female, Humans, Longitudinal Studies, Magnetic Resonance Imaging, Male, Middle Aged, Neuropsychological Tests, Prognosis, Proportional Hazards Models, Recurrence, Remission Induction, Sex Factors, Social Support, Stress, Psychological, Suicidal Ideation
Show Abstract · Added March 26, 2019
BACKGROUND - Late-life depression (LLD) is associated with a fragile antidepressant response and high recurrence risk. This study examined what measures predict recurrence in remitted LLD.
METHODS - Individuals of age 60 years or older with a Diagnostic and Statistical Manual - IV (DSM-IV) diagnosis of major depressive disorder were enrolled in the neurocognitive outcomes of depression in the elderly study. Participants received manualized antidepressant treatment and were followed longitudinally for an average of 5 years. Study analyses included participants who remitted. Measures included demographic and clinical measures, medical comorbidity, disability, life stress, social support, and neuropsychological testing. A subset underwent structural magnetic resonance imaging (MRI).
RESULTS - Of 241 remitted elders, approximately over 4 years, 137 (56.8%) experienced recurrence and 104 (43.2%) maintained remission. In the final model, greater recurrence risk was associated with female sex (hazard ratio [HR] = 1.536; confidence interval [CI] = 1.027-2.297), younger age of onset (HR = 0.990; CI = 0.981-0.999), higher perceived stress (HR = 1.121; CI = 1.022-1.229), disability (HR = 1.060; CI = 1.005-1.119), and less support with activities (HR = 0.885; CI = 0.812-0.963). Recurrence risk was also associated with higher Montgomery-Asberg Depression Rating Scale (MADRS) scores prior to censoring (HR = 1.081; CI = 1.033-1.131) and baseline symptoms of suicidal thoughts by MADRS (HR = 1.175; CI = 1.002-1.377) and sadness by Center for Epidemiologic Studies-Depression (HR = 1.302; CI, 1.080-1.569). Sex, age of onset, and suicidal thoughts were no longer associated with recurrence in a model incorporating report of multiple prior episodes (HR = 2.107; CI = 1.252-3.548). Neither neuropsychological test performance nor MRI measures of aging pathology were associated with recurrence.
CONCLUSIONS - Over half of the depressed elders who remitted experienced recurrence, mostly within 2 years. Multiple clinical and environmental measures predict recurrence risk. Work is needed to develop instruments that stratify risk.
© 2018 Wiley Periodicals, Inc.
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MeSH Terms
A Robotic Coach Architecture for Elder Care (ROCARE) Based on Multi-User Engagement Models.
Fan J, Bian D, Zheng Z, Beuscher L, Newhouse PA, Mion LC, Sarkar N
(2017) IEEE Trans Neural Syst Rehabil Eng 25: 1153-1163
MeSH Terms: Activities of Daily Living, Aged, Aged, 80 and over, Cognition Disorders, Equipment Design, Equipment Failure Analysis, Feasibility Studies, Female, Geriatric Assessment, Humans, Male, Man-Machine Systems, Neurological Rehabilitation, Patient Satisfaction, Physical Therapy Modalities, Pilot Projects, Reproducibility of Results, Robotics, Self-Help Devices, Sensitivity and Specificity, Social Support
Show Abstract · Added March 3, 2020
The aging population with its concomitant medical conditions, physical and cognitive impairments, at a time of strained resources, establishes the urgent need to explore advanced technologies that may enhance function and quality of life. Recently, robotic technology, especially socially assistive robotics has been investigated to address the physical, cognitive, and social needs of older adults. Most system to date have predominantly focused on one-on-one human robot interaction (HRI). In this paper, we present a multi-user engagement-based robotic coach system architecture (ROCARE). ROCARE is capable of administering both one-on-one and multi-user HRI, providing implicit and explicit channels of communication, and individualized activity management for long-term engagement. Two preliminary feasibility studies, a one-on-one interaction and a triadic interaction with two humans and a robot, were conducted and the results indicated potential usefulness and acceptance by older adults, with and without cognitive impairment.
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Postdiagnosis social networks and breast cancer mortality in the After Breast Cancer Pooling Project.
Kroenke CH, Michael YL, Poole EM, Kwan ML, Nechuta S, Leas E, Caan BJ, Pierce J, Shu XO, Zheng Y, Chen WY
(2017) Cancer 123: 1228-1237
MeSH Terms: Biomarkers, Tumor, Breast Neoplasms, Cohort Studies, Female, Follow-Up Studies, Humans, Mortality, Neoplasm Staging, Patient Outcome Assessment, Population Surveillance, Prognosis, Proportional Hazards Models, Risk Factors, Social Support, Socioeconomic Factors
Show Abstract · Added May 19, 2017
BACKGROUND - Large social networks have been associated with better overall survival, though not consistently with breast cancer (BC)-specific outcomes. This study evaluated associations of postdiagnosis social networks and BC outcomes in a large cohort.
METHODS - Women from the After Breast Cancer Pooling Project (n = 9267) provided data on social networks within approximately 2 years of their diagnosis. A social network index was derived from information about the presence of a spouse/partner, religious ties, community ties, friendship ties, and numbers of living first-degree relatives. Cox models were used to evaluate associations, and a meta-analysis was used to determine whether effect estimates differed by cohort. Stratification by demographic, social, tumor, and treatment factors was performed.
RESULTS - There were 1448 recurrences and 1521 deaths (990 due to BC). Associations were similar in 3 of 4 cohorts. After covariate adjustments, socially isolated women (small networks) had higher risks of recurrence (hazard ratio [HR], 1.43; 95% confidence interval [CI], 1.15-1.77), BC-specific mortality (HR, 1.64; 95% CI, 1.33-2.03), and total mortality (HR, 1.69; 95% CI, 1.43-1.99) than socially integrated women; associations were stronger in those with stage I/II cancer. In the fourth cohort, there were no significant associations with BC-specific outcomes. A lack of a spouse/partner (P = .02) and community ties (P = .04) predicted higher BC-specific mortality in older white women but not in other women. However, a lack of relatives (P = .02) and friendship ties (P = .01) predicted higher BC-specific mortality in nonwhite women only.
CONCLUSIONS - In a large pooled cohort, larger social networks were associated with better BC-specific and overall survival. Clinicians should assess social network information as a marker of prognosis because critical supports may differ with sociodemographic factors. Cancer 2017;123:1228-1237. © 2016 American Cancer Society.
© 2016 American Cancer Society.
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15 MeSH Terms
Dimensions of religious involvement and leukocyte telomere length.
Hill TD, Ellison CG, Burdette AM, Taylor J, Friedman KL
(2016) Soc Sci Med 163: 168-75
MeSH Terms: Adaptation, Psychological, Adult, Aged, Aging, Alcoholics, Cross-Sectional Studies, Female, Humans, Leukocytes, Male, Middle Aged, Regression Analysis, Religion, Smokers, Social Support, Stress, Psychological, Telomere, Tennessee
Show Abstract · Added April 8, 2019
Although numerous studies suggest that religious involvement is associated with a wide range of favorable health outcomes, it is unclear whether this general pattern extends to cellular aging. In this paper, we tested whether leukocyte telomere length varies according to several dimensions of religious involvement. We used cross-sectional data from the Nashville Stress and Health Study (2011-2014), a large probability sample of 1252 black and white adults aged 22 to 69 living in Davidson County, TN, USA. Leukocyte telomere length was measured using the monochrome multiplex quantitative polymerase chain reaction method with albumin as the single-copy reference sequence. Dimensions of religious involvement included religiosity, religious support, and religious coping. Our multivariate analyses showed that religiosity (an index of religious attendance, prayer frequency, and religious identity) was positively associated with leukocyte telomere length, even with adjustments for religious support, religious coping, age, gender, race, education, employment status, income, financial strain, stressful life events, marital status, family support, friend support, depressive symptoms, smoking, heavy drinking, and allostatic load. Unlike religiosity, religious support and religious coping were unrelated to leukocyte telomere length across models. Depressive symptoms, smoking, heavy drinking, and allostatic load failed to explain any of the association between religiosity and telomere length. To our knowledge, this is the first population-based study to link religious involvement and cellular aging. Although our data suggest that adults who frequently attend religious services, pray with regularity, and consider themselves to be religious tend to exhibit longer telomeres than those who attend and pray less frequently and do not consider themselves to be religious, additional research is needed to establish the mechanisms underlying this association.
Copyright © 2016 Elsevier Ltd. All rights reserved.
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Post-diagnosis social networks, and lifestyle and treatment factors in the After Breast Cancer Pooling Project.
Kroenke CH, Michael YL, Shu XO, Poole EM, Kwan ML, Nechuta S, Caan BJ, Pierce JP, Chen WY
(2017) Psychooncology 26: 544-552
MeSH Terms: Adult, Breast Neoplasms, China, Female, Humans, Life Style, Logistic Models, Middle Aged, Prognosis, Quality of Life, Social Isolation, Social Support
Show Abstract · Added May 19, 2017
OBJECTIVE - Larger social networks have been associated with better breast cancer survival. To investigate potential mediators, we evaluated associations of social network size and diversity with lifestyle and treatment factors associated with prognosis.
METHODS - We included 9331 women from the After Breast Cancer Pooling Project who provided data on social networks within approximately two years following diagnosis. A social network index was derived from information about the presence of a spouse or intimate partner, religious ties, community participation, friendship ties, and numbers of living relatives. Diversity was assessed as variety of ties, independent of size. We used logistic regression to evaluate associations with outcomes and evaluated whether effect estimates differed using meta-analytic techniques.
RESULTS - Associations were similar across cohorts though analyses of smoking and alcohol included US cohorts only because of low prevalence of these behaviors in the Shanghai cohort. Socially isolated women were more likely to be obese (OR = 1.21, 95% CI:1.03-1.42), have low physical activity (<10 MET-hours/week, OR = 1.55, 95% CI:1.36-1.78), be current smokers (OR = 2.77, 95% CI:2.09-3.68), and have high alcohol intake (≥15 g/d, OR = 1.23, 95% CI:1.00-1.51), compared with socially integrated women. Among node positive cases from three cohorts, socially isolated women were more likely not to receive chemotherapy (OR = 2.10, 95% CI:1.30-3.39); associations differed in a fourth cohort. Other associations (nonsignificant) were consistent with less intensive treatment in socially isolated women. Low social network diversity was independently associated with more adverse lifestyle, but not clinical, factors.
CONCLUSIONS - Small, less diverse social networks measured post-diagnosis were associated with more adverse lifestyle factors and less intensive cancer treatment. Copyright © 2016 John Wiley & Sons, Ltd.
Copyright © 2016 John Wiley & Sons, Ltd.
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12 MeSH Terms
Medication Nonadherence Before Hospitalization for Acute Cardiac Events.
Kripalani S, Goggins K, Nwosu S, Schildcrout J, Mixon AS, McNaughton C, McDougald Scott AM, Wallston KA, Vanderbilt Inpatient Cohort Study
(2015) J Health Commun 20 Suppl 2: 34-42
MeSH Terms: Acute Coronary Syndrome, Adult, Age Factors, Aged, Aged, 80 and over, Attitude to Health, Depression, Educational Status, Health Literacy, Heart Failure, Hospitalization, Hospitals, University, Humans, Medication Adherence, Middle Aged, Prospective Studies, Risk Factors, Self Report, Social Support, Tennessee
Show Abstract · Added April 6, 2017
Medication nonadherence increases the risk of hospitalization and poor outcomes, particularly among patients with cardiovascular disease. The purpose of this study was to examine characteristics associated with medication nonadherence among adults hospitalized for cardiovascular disease. Patients in the Vanderbilt Inpatient Cohort Study who were admitted for acute coronary syndrome or heart failure completed validated assessments of self-reported medication adherence (the Adherence to Refills and Medications Scale), demographic characteristics, health literacy, numeracy, social support, depressive symptoms, and health competence. We modeled the independent predictors of nonadherence before hospitalization, standardizing estimated effects by each predictor's interquartile range. Among 1,967 patients studied, 70.7% indicated at least some degree of medication nonadherence leading up to their hospitalization. Adherence was significantly lower among patients with lower health literacy (0.18-point change in adherence score per interquartile range change in health literacy), lower numeracy (0.28), lower health competence (0.30), and more depressive symptoms (0.52) and those of younger age, of non-White race, of male gender, or with less social support. Medication nonadherence in the period before hospitalization is more prevalent among patients with lower health literacy, numeracy, or other intervenable psychosocial factors. Addressing these factors in a coordinated care model may reduce hospitalization rates.
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20 MeSH Terms
The effect of social integration on outcomes after major lower extremity amputation.
Hawkins AT, Pallangyo AJ, Herman AM, Schaumeier MJ, Smith AD, Hevelone ND, Crandell DM, Nguyen LL
(2016) J Vasc Surg 63: 154-62
MeSH Terms: Adult, Aged, Aged, 80 and over, Amputation, Amputees, Boston, Chi-Square Distribution, Cross-Sectional Studies, Exercise Test, Female, Humans, Linear Models, Lower Extremity, Male, Middle Aged, Mobility Limitation, Multivariate Analysis, Quality of Life, Recovery of Function, Risk Factors, Social Behavior, Social Support, Surveys and Questionnaires, Tanzania, Treatment Outcome, Walking, Young Adult
Show Abstract · Added September 27, 2016
OBJECTIVE - Major lower extremity (MLE) amputation is a common procedure that results in a profound change in a patient's life. We sought to determine the association between social support and outcomes after amputation. We hypothesized that patients with greater social support will have better post amputation outcomes.
METHODS - From November 2011 to May 2013, we conducted a cross-sectional, observational, multicenter study. Social integration was measured by the social integration subset of the Short Form Craig Handicap Assessment and Reporting Technique. Systemic social support was assessed by comparing a United States and Tanzanian population. Walking function was measured using the 6-minute walk test and quality of life (QoL) was measured using the EuroQol-5D.
RESULTS - We recruited 102 MLE amputees. Sixty-three patients were enrolled in the United States with a mean age of 58.0. Forty-two (67%) were male. Patients with low social integration were more likely to be unable to ambulate (no walk 39% vs slow walk 23% vs fast walk 10%; P = .01) and those with high social integration were more likely to be fast walkers (no walk 10% vs slow walk 59% vs fast walk 74%; P = .01). This relationship persisted in a multivariable analysis. Increasing social integration scores were also positively associated with increasing QoL scores in a multivariable analysis (β, .002; standard error, 0.0008; P = .02). In comparing the United States population with the Tanzanian cohort (39 subjects), there were no differences between functional or QoL outcomes in the systemic social support analysis.
CONCLUSIONS - In the United States population, increased social integration is associated with both improved function and QoL outcomes among MLE amputees. Systemic social support, as measured by comparing the United States population with a Tanzanian population, was not associated with improved function or QoL outcomes. In the United States, steps should be taken to identify and aid amputees with poor social integration.
Copyright © 2016 Society for Vascular Surgery. Published by Elsevier Inc. All rights reserved.
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27 MeSH Terms
Disability but not social support predicts cognitive deterioration in late-life depression.
Riddle M, McQuoid DR, Potter GG, Steffens DC, Taylor WD
(2015) Int Psychogeriatr 27: 707-14
MeSH Terms: Aged, Cognition Disorders, Dementia, Depressive Disorder, Major, Disabled Persons, Female, Humans, Longitudinal Studies, Male, Middle Aged, Neuropsychological Tests, Risk Factors, Social Support
Show Abstract · Added February 4, 2016
BACKGROUND - Depression in late life is a risk factor for cognitive decline. Depression is also associated with increased disability and social support deficits; these may precede conversion to dementia and inform risk. In this study, we examined if baseline or one-year change in disability and social support predicted later cognitive deterioration.
METHODS - 299 cognitively intact depressed older adults were followed for an average of approximately seven years. Participants received antidepressant treatment according to a standardized algorithm. Neuropsychological testing and assessment of disability and social support were assessed annually. Cognitive diagnosis was reviewed annually at a consensus conference to determine if participants remained cognitively normal, or if they progressed to either dementia or cognitively impaired, no dementia (CIND).
RESULTS - During study participation, 167 individuals remained cognitively normal (56%), 83 progressed to CIND (28%), and 49 progressed to dementia (16%). Greater baseline instrumental activities of daily living (IADL) deficits predicted subsequent conversion to a cognitive diagnosis (CIND or dementia). However, neither baseline measures nor one-year change in basic ADLs (BADLs) and social support predicted cognitive conversion. In post hoc analyses, two IADL measures (managing finances, preparing meals) significantly increased the odds of cognitive conversion.
CONCLUSIONS - Greater IADL deficits predicted increased risk of cognitive conversion. Assessment of IADL deficits may provide clues about risk of later cognitive decline.
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13 MeSH Terms
Predictors of health care system and physician distrust in hospitalized cardiac patients.
Gupta C, Bell SP, Schildcrout JS, Fletcher S, Goggins KM, Kripalani S, Vanderbilt Inpatient Cohort Study (VICS)
(2014) J Health Commun 19 Suppl 2: 44-60
MeSH Terms: Acute Coronary Syndrome, Adaptation, Psychological, Adult, Aged, Attitude to Health, Female, Health Literacy, Heart Failure, Humans, Inpatients, Male, Middle Aged, Multivariate Analysis, Physician-Patient Relations, Prospective Studies, Social Support, Trust
Show Abstract · Added January 20, 2015
Trusting relationships among patients, physicians, and the health care system is important in encouraging self-care behaviors in cardiovascular patients. This study aimed to assess the prevalence of health care system and physician distrust in this population, compare the 2 forms of distrust, and describe the demographic, socioeconomic, and psychosocial predictors of high distrust. A total of 1,232 hospitalized adults with acute coronary syndrome or heart failure were enrolled in a prospective, observational study assessing health care system distrust and physician distrust. High health care system distrust (35%) was observed across the population, with lower levels of interpersonal physician distrust (16%). In a multivariate analysis, poor social support and coping skills were strong predictors of both health care system (p=.026, p=.003) and physician distrust (p<.001, p=.006). Individuals with low or marginal health literacy had a higher likelihood of physician distrust (p<.001), but no relation was found between health literacy and health care system distrust. In conclusion, distrust is common among acutely ill cardiac patients. Those with low social support and low coping skills are more distrusting of physicians and the health care system.
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17 MeSH Terms