scholarly journals Patterns of Dyadic Appraisal of Decision-Making Involvement of African American Persons Living With Dementia

2020 ◽  
Author(s):  
Kalisha Bonds ◽  
MinKyoung Song ◽  
Carol J Whitlatch ◽  
Karen S Lyons ◽  
Jeffrey A Kaye ◽  
...  
Keyword(s):  
Decision Making ◽  
African American ◽  
Latent Class ◽  
Secondary Analysis ◽  
Mixture Modeling ◽  
Important Goal ◽  
Cross Sectional ◽  
High Involvement ◽  
Design And Methods

Abstract Background and Objectives Greater everyday decision-making involvement by persons living with dementia (PLWD) and congruent appraisal between PLWDs and their caregivers have been associated with a better quality of life (QOL) for both members of the dyad. However, no study has examined the association between the appraisals of everyday decision-making involvement of PLWDs and their QOL among African Americans. Research Design and Methods A secondary analysis of cross-sectional data from 62 African American dementia dyads was conducted. Multilevel and latent class mixture modeling was used to characterize dyadic appraisal of the decision-making involvement of African American PLWDs and identify distinct patterns thereof. Results Three distinct patterns were observed. “Incongruent, PLWD Low Involvement” labeled 19.4% of the sample, 53.2% were labeled “Incongruent, PLWD Moderate Involvement,” and 27.4% were labeled “Congruent, PLWD High Involvement.” The Congruent, PLWD High Involvement pattern consisted of PLWDs who were significantly younger and had significantly less cognitive impairment than PLWDs in the other patterns. In the Incongruent, PLWD Moderate Involvement pattern, PLWDs had significantly better QOL than PLWDs in the Incongruent, PLWD Low Involvement pattern, but QOL did not significantly differ from PLWDs in the Congruent, PLWD High Involvement pattern. Discussion and Implications There is a need to tailor strategies to optimize QOL in African American dementia dyads. While increasing everyday decision-making involvement for PLWDs in the Incongruent, PLWD Low Involvement pattern is an important goal, other strategies may be needed to improve the QOL of PLWDs in the remaining patterns.

scholarly journals Diabetes knowledge, risk perception, and quality of life among South Asian caregivers in young adulthood

2020 ◽  
Vol 8 (2) ◽  
pp. e001268
Author(s):  
Angela Koipuram ◽  
Sandra Carroll ◽  
Zubin Punthakee ◽  
Diana Sherifali
Keyword(s):  
Quality Of Life ◽  
Risk Perception ◽  
South Asian ◽  
Online Survey ◽  
Educational Interventions ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Significant Difference ◽  
Design And Methods

IntroductionPersons of South Asian descent have a higher prevalence of type 2 diabetes mellitus (T2DM). The management of T2DM in the South Asian community has required the support of adult children, potentially impacting the quality of life, diabetes-related knowledge, and risk perception among these caregivers.Research design and methodsTo investigate diabetes-related knowledge, quality of life, risk perception, and actual risk of developing diabetes among South Asian young adults whose parents are living with T2DM. A cross-sectional study was conducted (n=150). An online survey was administered. Data were analyzed with descriptive and inferential statistics.ResultsThere was a statistically significant difference in diabetes-related knowledge between males and females (p<0.001). Males (in comparison to females) had a lower risk perception of developing diabetes (p=0.06). Further, risk perception and diabetes-related knowledge were positively associated with caregiver’s physical health (p=0.002).ConclusionFindings highlight the importance of providing gender-specific and culturally tailored diabetes educational interventions.

scholarly journals REXIC project: retrospective cross-sectional study of documentation of informed consent for research biobanking in a public research and teaching hospital

2013 ◽  
Vol 2 (1) ◽  
pp. 10 ◽  
Author(s):  
Marta Nobile ◽  
Elena Garavelli ◽  
Barbara Gagliardi ◽  
Silvia Giovanelli ◽  
Paolo Rebulla ◽  
...  
Keyword(s):  
Informed Consent ◽  
Standard Model ◽  
Cross Sectional Study ◽  
Essential Elements ◽  
Cross Sectional ◽  
Research And Teaching ◽  
Single Standard ◽  
Set Up ◽  
Design And Methods

<em>Background</em>. The Center for Transfusion Medicine, Cell Therapy and Cryobiology, Milan, Northern Italy, is the headquarter of the POLI-MI biobank. It co-ordinates the biobank activities of the Fondazione Ca’ Granda Ospedale Maggiore Policlinico of Milan. Such activities require specific safeguarding of donors’ rights and protection of sensitive and genetic data. The Fondazione Ca’ Granda Ospedale Maggiore Policlinico has set up a project on informed consent with the aim of developing awareness and understanding of this issue. Within this project, it has been decided to evaluate how consent for biobanking material is expressed. <em>Design and methods.</em> The aim of the study was to evaluate the quality and completeness of consent to biobanking in the POLI-MI biobank. This was a retrospective study carried out in 2012 on samples of consent declarations collected by biobank units in 2011. Some units used a single, standard consent model available from a previous POLI-MI biobank workgroup. Other units used models which had been previouly formulated. Evaluation was made using a form that indicated the essential elements of consent. <em>Results</em>. A total of 48 consent declarations were collected using the single, standard model and 84 were collected using other models. The consent declarations that used the single, standard model were found to be the most complete and were filled in better than other models. <em>Conclusions</em>. Progressive adoption of a simple, standard consent model is expected to improve the quality of consent acquisition. Regular audit of the compliance of consent practices with ethical and legal requirements is mandatory to improve the quality of research biobanking.

scholarly journals A scoping review of palliative care outcome measures in interstitial lung disease

2021 ◽  
Vol 30 (161) ◽  
pp. 210080
Author(s):  
Rebecca A. Gersten ◽  
Amanda C. Moale ◽  
Bhavna Seth ◽  
Judith B. Vick ◽  
Hannah Brown ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Palliative Care ◽  
Physical Health ◽  
Outcome Measures ◽  
Secondary Analysis ◽  
Social Health ◽  
Cross Sectional ◽  
Care Outcome

Interstitial lung disease (ILD) confers a high mortality and symptom burden, substantially impacting quality of life. Studies evaluating palliative care in ILD are rapidly expanding. Uniform outcome measures are crucial to assessing the impact of palliative care in ILD. This scoping review evaluates existing outcome measures in general health-related quality of life (HRQoL), physical health, mental health, social health and advance care planning (ACP) domains in patients with ILD. Articles in English with quantitative assessment of at least one measure of general HRQoL, physical health, mental health, social health or ACP in patients with ILD were included. Searches across three databases yielded 3488 non-duplicate articles. 23 met eligibility criteria and included three randomised controlled trials (RCTs) or secondary analysis of an RCT (13%), three cross-sectional studies or secondary analysis of cross-sectional study (13%), one prospective study (4%) and 16 retrospective studies (70%). Among eligible articles, 25 distinct instruments were identified. Six studies assessed general HRQoL (26%), 16 assessed physical health (70%), 11 assessed mental health (48%), six assessed social health (26%) and 16 assessed ACP (70%). The ability to compare results across studies remains challenging given the heterogeneity in outcome measures. Future work is needed to develop core palliative care outcome measures in ILD.

scholarly journals Associations between Demographics and Quality of Life in Children in the First Year of Cancer Treatment

2021 ◽  
Author(s):  
Jennifer Raybin ◽  
Verna Hendricks-Ferguson ◽  
Paul Cook ◽  
Catherine Jankowski
Keyword(s):  
Quality Of Life ◽  
Cancer Treatment ◽  
Secondary Analysis ◽  
Symptom Distress ◽  
Older Age ◽  
First Year ◽  
Strongly Correlated ◽  
Cross Sectional ◽  
Biologic Marker

Symptom distress and decreased quality of life (QOL) among children with cancer are well documented. Research is emerging on the child’s voice in QOL-symptom reports, but existing QOL questionnaires are burdensome and objective biologic markers are lacking. We examined children’s symptoms and QOL from parent and child perspectives and compared the results to one biologic marker (body posture). A cross-sectional secondary analysis of prospective data from children receiving creative arts therapy explored potential associations among demographics with and between QOL measures (PedsQL, Faces Scale, posture). Children (n = 98) ranged in age from 3-17 years (M = 7.8) and were in the first year of cancer treatment. No significant associations were found among the child’s sex, race/ethnicity, socioeconomic status (SES), or distance from hospital and total PedsQL. Older age was associated with worse total PedsQL, pain, nausea, worry, and posture (all ps < .05). Greater worry (β = 0.51) and worse posture (β = 0.41) were the QOL variables most strongly correlated with older age. Poorer posture was associated with worse child PedsQL (total score, nausea, treatment anxiety, cognitive) and parent PedsQL (pain, nausea). Worse scores on the Faces Scale, PedsQL, and posture were all correlated (rs = .21 - .39, all ps < .05). Interventions to improve QOL could target nausea, worry, and older patients. Accuracy and interpretation of symptom distress in children is problematic. The Faces Scale and posture may be suitable, readily obtained measures of QOL in pediatric oncology that hold promise.

Pregnant women’s attitudes about topical microbicides for the prevention and treatment of bacterial vaginosis during pregnancy

2016 ◽  
Vol 28 (9) ◽  
pp. 881-886 ◽  
Author(s):  
Marina Catallozzi ◽  
Lauren Dapena Fraiz ◽  
Katharine M Hargreaves ◽  
Gregory D Zimet ◽  
Lawrence R Stanberry ◽  
...  
Keyword(s):  
Decision Making ◽  
African American ◽  
Bacterial Vaginosis ◽  
African American Women ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Product Use ◽  
Prevention And Treatment ◽  
Topical Microbicides ◽  
Product Preferences

We sought to understand pregnant women’s product preference and likelihood of use of topical microbicides for bacterial vaginosis (BV) prevention and treatment. Pregnant women (N = 196) in a obstetrics clinic completed a survey between June 2014 and January 2015 about vaginal product use for BV. This cross-sectional study explored product preferences, likelihood of product use for BV management and father of the baby (FOB) involvement. Most participants were under 30 (68%) and underrepresented minorities (47% Hispanic, 21% African-American). Most women preferred the gel (69%). Only 30% were likely to use either product for prevention of BV; 76% if high risk for BV; 83% treatment of BV. Anticipated FOB involvement in decision-making included that 46% would ask his opinion, 38% would inform him of the decision and 7% would need approval. Most (87%) would ask the FOB for reminders and 66% for insertion help. Those under 30 were more likely to agree to ask the FOB for reminders (p < 0.01) and insertion help (p = 0.05). African-American women were less likely to have their FOB help with insertion (p < 0.01). Product preferences may be less critical than risk perception. Involvement of the FOB in decision-making may be vital.

scholarly journals Differences in Health Behavior Profiles of Adolescents in Urban and Rural Areas in a Korean City

Healthcare ◽  
2021 ◽  
Vol 9 (3) ◽  
pp. 282
Author(s):  
Myungah Chae ◽  
Kihye Han
Keyword(s):  
Health Behavior ◽  
Rural Areas ◽  
Fast Food ◽  
Latent Class ◽  
Secondary Analysis ◽  
Risk Groups ◽  
Rural Students ◽  
Cross Sectional ◽  
Urban And Rural Areas ◽  
High Level

Through a latent class analysis approach, we can classify individuals and identify subgroups according to health behavior patterns, and find evidence for the development of customized intervention programs to target high-risk groups. Our study aimed to explore differences in latent classes of health behaviors in adolescents by region (urban vs. rural areas) in a Korean city. This cross-sectional secondary analysis utilized data collected from all first graders’ student health checkups in middle school and high school in a city of the largest island in Korea in 2016 (n = 1807). Health behavior indicators included both healthy (consuming breakfast regularly, consuming vegetables daily, consuming milk daily, consuming fast food on a limited basis, engaging in vigorous physical activities, brushing teeth, and practicing hand hygiene) and unhealthy (drinking, smoking, and overusing the internet) behaviors. Nutritional and diet behaviors were important factors for classifying healthy and unhealthy adolescents in both regions. Approximately 11% of rural students belonged to the risky group, which was characterized by a high level of drinking alcohol and smoking. These results suggest that when developing health policies for adolescents, customized policy-making and education based on the targeted groups’ behavioral patterns could be more effective than a uniform approach.

Understanding of Prognosis Among Parents of Children With Cancer: Parental Optimism and the Parent-Physician Interaction

2007 ◽  
Vol 25 (11) ◽  
pp. 1357-1362 ◽  
Author(s):  
Jennifer W. Mack ◽  
E. Francis Cook ◽  
Joanne Wolfe ◽  
Holcombe E. Grier ◽  
Paul D. Cleary ◽  
...  
Keyword(s):  
Decision Making ◽  
Functional Outcome ◽  
Response Rate ◽  
Cross Sectional Survey ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Factors Associated ◽  
Dana Farber Cancer Institute ◽  
Unrealistic Expectations

Purpose Patients often overestimate their chances of surviving cancer. Factors that contribute to accurate understanding of prognosis are not known. We assessed understanding of likelihood of cure and functional outcome among parents of children with cancer and sought to identify factors that place parents at risk for overly optimistic beliefs about prognosis. Patients and Methods We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) who were treated at the Dana-Farber Cancer Institute and Children's Hospital in Boston, MA, and the children's physicians. Parent and physician expectations for likelihood of cure and functional outcome were compared. In 152 accurate or optimistic parents, we determined factors associated with accurate understanding of likelihood of cure compared with optimism. Results The majority of parents (61%) were more optimistic than physicians about the likelihood of cure. Parents' beliefs about other outcomes of cancer treatment were similar (quality-of-life impairment, P = .70) or more pessimistic (physical impairment, P = .01; intellectual impairment, P = .01) than physicians' beliefs. Parents and physicians were more likely to agree about chances of cure when physicians had confidence in knowledge of prognosis (odds ratio [OR] = 2.55, P = .004) and allowed parents to take their preferred decision-making role (OR = 1.89, P = .019). Conclusion Parents of children with cancer are overly optimistic about chances of cure but not about other outcomes of cancer therapy. Parents tend to be overly optimistic about cure when physicians have little confidence and when the decision-making process does not meet parents' preferences. These findings suggest that physicians are partly responsible for parents' unrealistic expectations about cure.

scholarly journals Poor Immunization Data Quality Led to Wrong Decision Making in Pertussis Outbreak Management in Southern Ethiopia: a Cross Sectional Study

2021 ◽  
Author(s):  
Mesele D. Argaw ◽  
Binyam F. Desta ◽  
Zergu T. Tsegaye ◽  
Aychiluhim D. Mitiku ◽  
Afework A Atsa ◽  
...  
Keyword(s):  
Decision Making ◽  
Data Quality ◽  
Household Survey ◽  
Cross Sectional Study ◽  
Health Centers ◽  
District Health ◽  
Cross Sectional ◽  
Outbreak Management ◽  
Accuracy Ratio

Abstract Background: The aim of this study was to investigate the quality of immunization data and monitoring systems in the Dara Malo district (woreda) of the Gamo Administrative Zone, Southern Nations, Nationalities and Peoples Region (SNNPR) of Ethiopia.Method: A cross-sectional study was conducted from August 4 to September 27, 2019 in Dara Malo District. The district was purposively selected during the management of a pertussis outbreak based on the hypothesis ‘there is no difference in reported and recounted immunization status of children 7 to 23 months in Dara Malo District of Ethiopia’. The study used the World Health Organization (WHO)-recommended Data Quality Self-Assessment (DQS) tools. The accuracy ratio was determined using data from the routine Expanded Program of Immunization (EPI) and household survey. Facility data spanning the course of 362 months were abstracted from EPI registers, tally sheets, and monthly routine reports. In addition, household surveys collected data from caretakers or immunization cards or oral reports. Trained DQS assessors collected the data to explore the quality of the monitoring system at health posts, health centers and district health offices. A quality index (QI) and proportions of completeness, timeliness and accuracy ratio of the first and third doses of pentavalent vaccines and the first dose of measles-containing vaccines (MCV) were made.Results: In this study, 336-month facility data were extracted. In addition, 595 children aged 7 - 23 months, with a response rate of 94.3%, were assessed and compared for immunization status using register and immunization cards or caretakers’ oral reports through the household survey. At the district level, the proportion of the re-counted vaccination data on EPI registers for first dose pentavalent was 95.20%, three doses of pentavalent was 104.2% and first dose of measles was 98.6%. However, the ratio of vaccination data compared using tallies against the reports showed evidence of overreporting with 50.8%, 45.1% and 46.5% for first pentavalent, third pentavalent and first dose of measles vaccinations, respectively. The completeness of the third dose of pentavalent vaccinations was 95.3%, 95.6% and 100.0% at health posts, health centers and at the district health office, respectively. The timeliness of the immunization reports was 56.5% and 64.6% at health posts and health centers, respectively, while the district health office does not have timely submitted on time to the next higher level for twelve months. The QI scores ranged between 61.0% and 80.5% for all five categories, namely, 73.0% for recording, 71.4% for archiving and reporting, 70.4% for demographic information, 69.7% for core outputs and 70.4% for data uses and were assessed as suboptimal at all levels.Conclusion: Immunization data completeness was found to be optimal. However, in the study area, the accuracy, consistency, timeliness and quality of the monitoring system were found to be suboptimal. Therefore, poor data quality has led to incorrect decision making during the reported pertussis outbreak management. Availing essential supplies, including tally sheets, monitoring charts and stock management tools, should be prioritized in Daro Malo District. Enhancing the capacity of healthcare providers on planning, recording, archiving and reporting, analyzing, and using immunization data for evidence-based decision making is recommended.

scholarly journals Institutional design and utilisation of evaluation results in Uganda’s public universities: Empirical findings from Kyambogo University

2017 ◽  
Vol 5 (1) ◽  
Author(s):  
James Kabuye ◽  
Benon C. Basheka
Keyword(s):  
Decision Making ◽  
Institutional Design ◽  
Monitoring And Evaluation ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Evaluation Systems ◽  
Effective Decision ◽  
Effective Decision Making ◽  
The University

Background: The need for evidence-based decision-making scaled up the need for monitoring and evaluation systems in Africa. The education sector has received increasing scrutiny, owing to its centrality in promoting the national agenda of countries. The higher education sub-sector has expanded in its drive to increase accessibility, albeit with numerous challenges and doubts, especially about the quality of education. Numerous evaluations in this sub-sector in Uganda have been carried out, but their results have not been used for effective decision-making. In this regard, the non-utilisation trend of evaluation findings is attributable to the design of the institutions where these evaluations are carried out.Objectives: The study examined the relationship between institutional design (procedural rules, evaluation processes and institutional capacity) and utilisation of evaluation results at Kyambogo University.Methodology: This was a cross-sectional survey involving a sample of 118 respondents whose views were obtained through the use of questionnaires and key informant interviews triangulated with documentary analysis.Results: The study found that procedural rules, evaluation processes and evaluation capacity had a positive (0.459, 0.486 and 0.765, respectively) and a statistically significant (sig. = 0.000) effect on utilisation of evaluation results. This means that the dimensions of institutional design were important predictors of utilisation of evaluation results by a public sector agency.Conclusion: Strengthening of the evaluation competences and capacity of the university by empowering the Directorate of Planning and Development to coordinate and harmonise all evaluations and be charged with the follow-up of utilisation of the results is an emerging recommendation from this study.

scholarly journals FORMAL AND DAILY CARE DECISION-MAKING INVOLVEMENT IN AFRICAN-AMERICAN DEMENTIA DYADS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S915-S915
Author(s):  
Kalisha Bonds ◽  
MinKyoung Song ◽  
Karen Lyons ◽  
Martha Driessnack
Keyword(s):  
Decision Making ◽  
African American ◽  
Decision Maker ◽  
Sense Of Self ◽  
Final Decision ◽  
The Novel ◽  
Structured Interviews ◽  
Daily Care ◽  
Care Decision

Abstract Decision-making involvement (e.g., verbal and/or nonverbal communication) of persons with dementia (PWD) has been associated with quality of life of PWDs and their caregivers, underscores personhood, and reduces ethical dilemmas for caregivers regarding the PWD’s care. Yet, no study has explored the decision-making involvement in formal and daily care of both members of African-American dementia dyads (i.e., African-American PWDs and their African-American caregivers), limiting our understanding of how these dyads navigate decision-making during the dementia trajectory. This study took a closer look through in-depth, semi-structured interviews with African-American dementia dyads as they reflected on their decision-making surrounding formal and daily care. A pilot study of five dyadic interviews, each averaging 45 minutes, was completed. We used a combination of quantitative content analysis, decision-making matrices and I-poems created from I-statements of the dyad regarding their decision-making involvement. Decision-making matrices (i.e., diagrams of the degree of sharing, the balance of power within the dyad, and the final decision maker in formal and daily care) were constructed across interviews. The pairing of traditional analyses with the novel use of I-poems traces participants’ sense of self, ensuring their voice is retained. There was agreement within all five dyads regarding the final decision maker(s) in formal and daily care. Between dyads, daily decision-making involvement was led by African American PWDs; whereas, formal care decision-making involvement of African American PWDs varied. Findings highlight the importance of a deeper understanding of formal and daily care decision-making involvement within and between African-American dementia dyads and potential clinical implications.

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