scholarly journals Remote Interviews and Visual Timelines with Patients: Lessons Learned

2021 ◽  
Author(s):  
Paula Valkonen ◽  
Nina Karisalmi ◽  
Johanna Kaipio ◽  
Sari Kujala
Keyword(s):  
Well Being ◽  
Lessons Learned ◽  
User Studies ◽  
Careful Planning ◽  
Extra Effort ◽  
Sensitive Topics ◽  
Health Related ◽  
Rich Data ◽  
Confidentiality And Privacy ◽  
Remote User

This article aims to support the design of remote user studies in the healthcare and well-being field. We introduce lessons learned from conducting remote interviews and using visual timelines as pretasks involving patients from two eHealth projects. Based on our experience, we conclude that remote interviews and visual timelines can provide rich data about user needs. However, careful planning is required. Building trust, rapport, confidentiality, and privacy requires extra effort from the researcher in studies involving sensitive topics. In this paper, we present a list of practical tips for planning qualitative health-related user studies.

Thrive, not just survive: the experience of a fellow in the SBM Leadership Institute to enhance opportunities for success of mid-career nurse scientists

2020 ◽  
Vol 10 (4) ◽  
pp. 912-914
Author(s):  
Patricia A Kinser
Keyword(s):  
Public Health ◽  
Well Being ◽  
Lessons Learned ◽  
Faculty Shortage ◽  
Administrative Roles ◽  
Related Discipline ◽  
Leadership Institute ◽  
Health Related ◽  
Funding Environment ◽  
Health And Well Being

Abstract Mid-career nurse scientists are at risk of burnout and departure from research-focused roles due to a myriad of reasons, including a nationwide faculty shortage, vacant administrative roles, and the challenging extramural funding environment. Retention and success of mid-career scientists in any health-related discipline is essential to maintain educational and research endeavors that are important for public health and well-being. This commentary provides an account of recent efforts to address these issues, from the perspective of a former fellow in the Society of Behavioral Medicine Leadership Institute. Although these efforts are focused specifically on the needs of nurse scientists, the topic is relevant to researchers in any discipline. The intent of this commentary is for others to benefit from the lessons learned and to build upon our current efforts to help mid-career scientists thrive, not just survive.

scholarly journals Feasibility and Considerations for Remote Interviewing of Persons Living With Dementia: Adaptations for COVID-19

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 255-256
Author(s):  
Jeanine Yonashiro Cho ◽  
Elizabeth Avent ◽  
Laura Mosqueda ◽  
Zachary Gassoumis
Keyword(s):  
Longitudinal Study ◽  
High Speed ◽  
Well Being ◽  
Lessons Learned ◽  
Remote Work ◽  
Promising Practices ◽  
Childhood Experiences ◽  
Sensitive Topics ◽  
Care Partners ◽  
Study Participants

Abstract The continuing COVID-19 pandemic has necessitated changes to research protocols and approaches to mitigate health risks to both study participants and researchers. This is particularly true of studies exploring the biopsychosocial well-being and personal perspectives of older adults and those at elevated risk of COVID-19 complications. While videoconferencing platforms have enabled remote work and social activities, reliance on them may potentially exclude some individuals (e.g., those without digital devices, access to high speed internet or proficiency with technology). Persons living with dementia (PLWD) may experience difficulties navigating videoconferencing systems and building rapport with interviewers, though the inclusion of PLWD in research is necessary to ensuring their equitable representation. This presentation disseminates promising practices and lessons learned from a longitudinal study conducting remote interviews on sensitive topics with PLWD and their care partners (CP). Findings are drawn from a case study of the Better Together Dementia Care Study, an 18-month longitudinal study of PLWD (N=8) and their CPs (N=13), which implemented remote interviewing in Summer 2020 to gather data on the quality-of-life, resilience, relationship quality, adverse childhood experiences, mistreatment, and health status of PLWD. Researchers were able to interview most enrolled PLWD (n=7) via videoconferencing. Paper surveys were mailed to phone-interviewed participants, enabling them to view questions and answer choices in concordance with verbal queries. Researchers also tested a protocol asking CPs to leave the room while PLWD answered questions on sensitive topics. Findings support the use of remote interviewing with PLWD and provide insights to guide replication of these approaches.

Assessment of health related issues in individuals’, couples’, and families’ daily life

2008 ◽  
Vol 16 (3) ◽  
pp. 146-149 ◽  
Author(s):  
Meinrad Perrez ◽  
Michael Reicherts ◽  
Yves Hänggi ◽  
Andrea B. Horn ◽  
Gisela Michel ◽  
...  
Keyword(s):  
Emotion Regulation ◽  
Daily Life ◽  
Ecological Validity ◽  
Reliability And Validity ◽  
Well Being ◽  
Computer Assisted ◽  
Emotional States ◽  
Self Reports ◽  
Health Related ◽  
Lower Variability

Abstract. Most research in health psychology is based on retrospective self reports, which are distorted by recall biases and have low ecological validity. To overcome such limitations we developed computer assisted diary approaches to assess health related behaviours in individuals’, couples’ and families’ daily life. The event- and time-sampling-based instruments serve to assess appraisals of the current situation, feelings of physical discomfort, current emotional states, conflict and emotion regulation in daily life. They have proved sufficient reliability and validity in the context of individual, couple and family research with respect to issues like emotion regulation and health. As examples: Regarding symptom reporting curvilinear pattern of frequencies over the day could be identified by parents and adolescents; or psychological well-being is associated with lower variability in basic affect dimensions. In addition, we report on preventive studies to improve parental skills and enhance their empathic competences towards their baby, and towards their partner.

Effects of MyBFF@school Intervention in Health-related Quality of Life among Overweight and Obese Primary School Children

2019 ◽  
Author(s):  
Zahari Ishak ◽  
Suet Fin Low ◽  
Wan Abdul Hakim Wan Ibrahim ◽  
Abqariyah Yahya ◽  
Fuziah Md. Zain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary School ◽  
School Children ◽  
Well Being ◽  
School Functioning ◽  
Primary School Children ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

<p>Obesity has been shown to impact the health-related quality of life (HRQOL) among children. This study aimed to determine the effectiveness of MyBFF@school program on HRQOL among overweight and obese primary school children in Malaysia. KINDL<sup>R</sup> Questionnaire was used to collect data on their HRQOL before and after the program. ANCOVA was used to analyse the comparison between intervention and control group after 6 months. There are significant effect on family functioning, F(2,1103)=7.452, p<0.05 and school functioning, F(1,1117)=7.103, p<0.05 after the intervention. Effects can also be seen on physical well-being, emotional well-being and friends functioning. The program is effective in improving the HRQOL significantly in two dimensions namely the family and school functioning. In order to achieve greater overall success,social support should be an integral part of the program and stigma on obesity should be managed and reduced by including normal-weight children in the program.</p>

Features and methods of assessing health-related quality of life and cognitive functions in patients with glial tumors

2020 ◽  
pp. 47-56
Author(s):  
Vera Arsenyeva ◽  
Boris Martynov ◽  
Gennadiy Bulyshchenko ◽  
Dmitriy Svistov ◽  
Boris Gaydar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Functions ◽  
Well Being ◽  
Health Related Quality ◽  
Number Of Patients ◽  
Related Quality ◽  
Health Related ◽  
Eortc Qlq ◽  
Patients With Epilepsy

Gliomas make up about 8 cases per 100,000 population and the number of patients with this disease is only increasing. There can be not only various types of neurological deficits among the symptoms, but also personal and emotional changes, that seriously affects the quality of life. The modern model of health care includes not only recovery of the patient’s physical functions, but also his or her psychosocial well-being. In particular, the assessment and study of the characteristics of health-related quality of life, as well as cognitive functions in patients with gliomas, is increasingly recognized as an important criterion when considering the effectiveness of treatment. To date, the features of health related quality of life and cognitive functions of patients with epilepsy and acute cerebral circulation disorders have been studied sufficiently, and, as a result, techniques have been developed that accurately assess the QOL and CF in patients with these diseases. These are QOLIE-31 and QOLIE-AD-48 questionnaires for patients with epilepsy. This is the National Institutes of Health Stroke Scale (NIHSS), Orgogozo stroke scale (OSS), World Federation of Neurological Surgeons (WFNS) scale for the clinical assessment of subarachnoid hemorrhage (SAH) for patients with acute cerebrovascular accident. At the same time, there are no generally accepted methods for assessing quality of life and neurocognitive functions that are sensitive to changes in the condition of patients with gliomas in the early postoperative period by the time of discharge from the hospital. As a result, there is no systematic information on the dynamics of the quality of life of such patients, their neurocognitive functioning. The purpose of this article was to study the literature on QOL and CF in patients affected by neurological and neurosurgical disorders for the further selection of optimal methods for assessing dynamics of the condition of patients with glial brain tumors before and after surgery. At the moment, such requirements are only partially met by the EORTC QLQ-C30 questionnaire and its application EORTC QLQ-BN20.

scholarly journals Costing interventions in the field: preliminary cost estimates and lessons learned from an evaluation of community-wide mass drug administration for elimination of soil-transmitted helminths in the DeWorm3 trial

BMJ Open ◽  
2021 ◽  
Vol 11 (7) ◽  
pp. e049734
Author(s):  
Katya Galactionova ◽  
Maitreyi Sahu ◽  
Samuel Paul Gideon ◽  
Saravanakumar Puthupalayam Kaliappan ◽  
Chloe Morozoff ◽  
...  
Keyword(s):  
Data Collection ◽  
Drug Administration ◽  
Financial Reporting ◽  
Mass Drug Administration ◽  
Lessons Learned ◽  
Secondary Outcome ◽  
Data Quality Control ◽  
Soil Transmitted Helminths ◽  
Trade Offs ◽  
Rich Data

ObjectiveTo present a costing study integrated within the DeWorm3 multi-country field trial of community-wide mass drug administration (cMDA) for elimination of soil-transmitted helminths.DesignTailored data collection instruments covering resource use, expenditure and operational details were developed for each site. These were populated alongside field activities by on-site staff. Data quality control and validation processes were established. Programmed routines were used to clean, standardise and analyse data to derive costs of cMDA and supportive activities.SettingField site and collaborating research institutions.Primary and secondary outcome measuresA strategy for costing interventions in parallel with field activities was discussed. Interim estimates of cMDA costs obtained with the strategy were presented for one of the trial sites.ResultsThe study demonstrated that it was both feasible and advantageous to collect data alongside field activities. Practical decisions on implementing the strategy and the trade-offs involved varied by site; trialists and local partners were key to tailoring data collection to the technical and operational realities in the field. The strategy capitalised on the established processes for routine financial reporting at sites, benefitted from high recall and gathered operational insight that facilitated interpretation of the estimates derived. The methodology produced granular costs that aligned with the literature and allowed exploration of relevant scenarios. In the first year of the trial, net of drugs, the incremental financial cost of extending deworming of school-aged children to the whole community in India site averaged US$1.14 (USD, 2018) per person per round. A hypothesised at-scale routine implementation scenario yielded a much lower estimate of US$0.11 per person treated per round.ConclusionsWe showed that costing interventions alongside field activities offers unique opportunities for collecting rich data to inform policy toward optimising health interventions and for facilitating transfer of economic evidence from the field to the programme.Trial registration numberNCT03014167; Pre-results.

scholarly journals Impact of Depression and Anxiety on Dimensions of Health-Related Quality of Life in Subjects with Parkinson’s Disease Enrolled in an Association of Patients

2021 ◽  
Vol 11 (6) ◽  
pp. 771
Author(s):  
Fany Chuquilín-Arista ◽  
Tania Álvarez-Avellón ◽  
Manuel Menéndez-González
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Psychiatric Symptoms ◽  
Well Being ◽  
Depression And Anxiety ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Parkinson’s disease (PD) is a complex disorder characterized by a wide spectrum of symptoms. Depression and anxiety are common manifestations in PD and may be determinants of health-related quality of life (HRQoL). The objective of this study is to determine the association of depression and anxiety with the dimensions of HRQoL in subjects with PD enrolled in an association of patients. Ninety-five community-based patients with PD diagnosis at different disease stages were studied. HRQoL was assessed using the Parkinson’s Disease Questionnaire (PDQ-39); depression and anxiety were assessed using the Beck Depression Inventory (BDI-II) and the State-Trait Anxiety Inventory (STAI), respectively. Our results showed that depression and anxiety were negatively associated with HRQoL measured by PDSI. Higher motor dysfunction measured by Hoehn and Yahr (H&Y) staging was also associated with worse HRQoL. Depression was the most influential variable in the model. All PDQ-39 dimensions except social support and bodily discomfort were associated with depression. Anxiety was associated with the emotional well-being and bodily discomfort dimensions. These results suggest that physicians should pay attention to the presence of psychiatric symptoms and treat them appropriately.

scholarly journals Primary Prevention of Dementia: An Ethical Review

2020 ◽  
pp. 1-10
Author(s):  
Dorothee Horstkötter ◽  
Kay Deckers ◽  
Sebastian Köhler
Keyword(s):  
Synergistic Effects ◽  
Well Being ◽  
Ethical Review ◽  
Medical Risk ◽  
Medical Risk Factors ◽  
Societal Challenges ◽  
Dementia Prevention ◽  
Health Related ◽  
Personal Level

Dementia poses important medical and societal challenges, and of all health risks people face in life, dementia is one of the most feared. Recent research indicates that up to about 40% of all cases of dementia might be preventable. A series of environmental, social, and medical risk-factors have been identified and that should be targeted from midlife onwards when people are still cognitively healthy. At first glance, this seems not merely advisable, but even imperative. However, these new developments trigger a series of new ethical questions and concerns which have hardly been addressed to date. Pro-active ethical reflection, however, is crucial to ensure that the interests and well-being of those affected, ultimately all of us, are adequately respected. This is the goal of the current contribution. Against the background of a concrete case in primary dementia prevention, it provides a systematic overview of the current ethical literature and sketches an ethical research agenda. First, possible benefits of increased well-being must be balanced with the burdens of being engaged in particularly long-term interventions for which it is unclear whether they will ever pay out on a personal level. Second, while knowledge about one’s options to maintain brain health might empower people, it might also undermine autonomy, put high social pressure on people, medicalize healthy adults, and stigmatize those who still develop dementia. Third, while synergistic effects might occur, the ideals of dementia prevention might also conflict with other health and non-health related values people hold in life.

scholarly journals Psychometric analysis of the Brazilian-version Kidscreen-27 questionnaire

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Pablo Magno da Silveira ◽  
Alexsandra da Silva Bandeira ◽  
Marcus Vinicius Veber Lopes ◽  
Adriano Ferreti Borgatto ◽  
Kelly Samara da Silva
Keyword(s):  
Public Schools ◽  
Construct Validity ◽  
Internal Consistency ◽  
Intraclass Correlation ◽  
Well Being ◽  
Discriminatory Power ◽  
Brazilian Version ◽  
Related Quality ◽  
Health Related ◽  
Delta G

Abstract Background The objective of this study was to verify the reliability, discriminatory power and construct validity of the Kidscreen-27 questionnaire in Brazilian adolescents. Methods Adolescents that participated of the pilot study (210 adolescents; 52.9% boys; 13.7 years old) and of the baseline (816 participants; 52.7% girls; 13.1 years old) of the Movimente Project in 2016/2017 composed the sample of the present study. This project was carried out in six public schools in the city of Florianópolis, Santa Catarina, Brazil. Test–retest reproducibility was assessed by the intraclass correlation coefficient and Gwet coefficient; internal consistency through McDonald's Omega; Hankins' Delta G coefficient verified the scale's discriminatory power and; confirmatory factor analysis to assess construct validity. Results Reproducibility values ranged from 0.71 to 0.78 for the dimensions (ICC), and ranged from 0.60 to 0.83 for the items (Gwet). McDonald's Ômega (0.82–0.91) for internal consistency measures. Discriminatory power ranging from 0.94 for the dimension Social Support and Friends to 0.98 for Psychological Well-Being. The factorial loads were > 0.40, except for item 19 (0.36). The fit quality indicators of the model were adequate (X2[df] = 1022.89 [311], p < 0.001; RMSEA = 0.053 (0.049–0.087); CFI = 0.988; TLI = 0.987), confirming the five-factor structure originally proposed. Conclusions The Brazilian-version Kidscreen-27 achieved good levels of reproducibility, internal consistency, discriminatory power and construct validity. Its use is adequate to measure the health-related quality of life of adolescents in the Brazilian context.

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