scholarly journals Effects of parental level of income and visual presentation of spina bifida occulta in decision making process

2020 ◽  
Vol 11 ◽  
pp. 271
Author(s):  
Julia Zhuyu Guo ◽  
Ning Yao ◽  
Nan Bao ◽  
Jorge Lazareff
Keyword(s):  
Decision Making ◽  
Spina Bifida ◽  
Healthcare Providers ◽  
Surgical Care ◽  
Health Resources ◽  
Visual Presentation ◽  
Spina Bifida Occulta ◽  
Decision Making Process ◽  
Lower Income ◽  
Subcutaneous Mass

Background: Parents are active participants in the referral process of children with non-life-threatening surgical pathologies. Nonetheless, there is scarce literature about the influence of parent’s level of income and perception of their children’s conditions on their decision process. Our study aims at expanding our knowledge about this parameter. We focused our research on parents of children spina bifida occulta (SBO), a condition that with a broad clinical impact and that often requires timely referral. Methods: Questionnaires in Mandarin were administered to parents of patients presenting to the neurosurgery clinic of a children’s hospital in Shanghai. Participants were grouped according to the level of income, above and below 50,000 Yuan. The SBO was classified into two groups, with and without evident subcutaneous mass. Results: One hundred and forty-five participants completed the questionnaire. Regardless of the type of lesion, families with lower income attributed their concerns for seeking care to their local physicians and the lack of health resources. Families with higher income exhibited fear of treatment. The lower income cohort presented for treatment at an older age than a higher income group. Patients with subcutaneous mass presented for treatment at a younger age than those that did not exhibit mass. Conclusion: Parental social economic background and visual presentation of SBO have to be factored when analyzing their decision-making process when seeking care for their children. Parental factors can be barriers to surgical care. Healthcare providers must bring parents to the forefront of the treatment process.

O-185 Evaluation of the decision-making process of girls with Turner syndrome and their parents considering ovarian tissue cryopreservation

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
S. Van der Coelen ◽  
M Schleedoorn ◽  
S Nadesapillai ◽  
R Peek ◽  
D Braat ◽  
...  
Keyword(s):  
Decision Making ◽  
Focus Group ◽  
Focus Groups ◽  
Turner Syndrome ◽  
Ovarian Tissue ◽  
Healthcare Providers ◽  
Ovarian Tissue Cryopreservation ◽  
Decision Making Process ◽  
Literature Research ◽  
Tissue Cryopreservation

Abstract Study question What are the experiences with the decision-making process of girls with Turner syndrome (TS) considering ovarian tissue cryopreservation (OTC), their parents and healthcare providers? Summary answer Offering a new option to preserve fertility in TS caused unrealistic hope leading to challenges for healthcare providers to fulfil the ideal of informed consent. What is known already Due to premature ovarian insufficiency, girls with TS have only a small chance of genetic offspring. OTC might increase these odds. Healthcare providers and scientist are still cautious in offering OTC to girls with TS because of the many uncertainties regarding OTC in this patient group. Hence, OTC is now offered to girls with TS between 2 and 18 years old in a research setting: the TurnerFertility study. Study design, size, duration A retrospective qualitative study consisting of a survey and focus groups. Within a year after counselling, families (n = 132) received a survey with 30 questions regarding their experiences with the decision-making process and also an invitation for a focus group. The focus groups were conducted between January and October 2019 and lasted 51-84 minutes. The topic lists were based on literature research and survey results. Results were analysed following a thematic analysis approach. Participants/materials, setting, methods This is a sub-study of the prospective intervention study within an academical medical centre. Focus groups were composed through purposive sampling. Focus group 1 (FG1) consisted of five gynaecologists involved in counselling, FG2 with seven paediatricians who referred girls for counselling, FG3 with nine parents of girls with TS between 2 and 12 years old and FG4 with three parents of girls with TS between 13 and 17 years old. Main results and the role of chance 90% of survey respondents appreciated counselling regarding fertility options and considered it an enrichment of existing healthcare. The individual consultation was rated as most contributing by 66% of the survey respondents, followed by the information meeting (37%) and decision aid (3%). The focus groups revealed that many had not discussed options for future parenthood with a healthcare provider before. Girls with TS and their parents indicated that the option of OTC raised hope for future genetic offspring, and at once made them feel like they had no choice but to take this chance. The small chance of success did not influence the decision for families who opted for OTC. Some parents who had to decide for their young daughter accepted OTC to give their daughter the option to decide herself whether to make use of the cryopreserved tissue later in life. Gynaecologists found it challenging to truly make families grasp a realistic perspective of OTC in TS and the associated mental and physical risks. Gynaecologists and paediatricians struggled with conflicting moral principles of non-maleficence against respect for autonomy: healthcare providers recognized the scientific relevance for the TS population, while it felt inconsistent with the disproportionate burden for some individual patients. Limitations, reasons for caution Because there was no validated survey for this topic in TS, we developed a survey based on literature research and experiences of a dedicated TS team. Among the survey responders and focus group participants a greater proportion decided for OTC compared to the overall counselled group (75% vs 60%). Wider implications of the findings This study gives insight in the issues to consider when implementing new technologies regarding fertility, in which parents have to decide for their child, where it is expected that anticipated decision regret plays a major role, or where healthcare providers experience conflicting duties as scientist and physician. Trial registration number not applicable

scholarly journals Socio-Cultural Sustainability of Private Healthcare Providers in an Indian Slum Setting: A Bottom-of-the-Pyramid Perspective

2018 ◽  
Vol 10 (12) ◽  
pp. 4702 ◽  
Author(s):  
Federica Angeli ◽  
Shila Teresa Ishwardat ◽  
Anand Kumar Jaiswal ◽  
Antonio Capaldo
Keyword(s):  
Decision Making ◽  
Business Models ◽  
Healthcare Providers ◽  
Healthcare Services ◽  
Public Hospitals ◽  
Decision Making Process ◽  
Bottom Of The Pyramid ◽  
Social Entrepreneurs ◽  
Private Healthcare ◽  
Significant Difference

Delivery of affordable healthcare services to communities is a necessary precondition to poverty alleviation. Co-creation approaches to the development of business models in the healthcare industry proved particularly suitable for improving the health-seeking behavior of BOP patients. However, scant research was conducted to understand BOP consumers’ decision-making process leading to specific healthcare choices in slum settings, and the relative balance of socio-cultural and socio-economic factors underpinning patients’ preferences. This article adopts a mixed-method approach to investigate the determinants of BOP patients’ choice between private and public hospitals. Quantitative analysis of a database, composed of 436 patients from five hospitals in Ahmedabad, India, indicates that BOP patients visit a public hospital significantly more than top-of-the-pyramid (TOP) patients. However, no significant difference emerges between BOP and TOP patients for inpatient or outpatient treatments. Qualitative findings based on 21 interviews with BOP consumers from selected slum areas led to the development of a grounded theory model, which highlights the role of aspirational demand of BOP patients toward private healthcare providers. Overall, healthcare provider choice emerges as the outcome of a collective socio-cultural decision-making process, which often assigns preference for private healthcare services because of the higher perceived quality of private providers, while downplaying affordability concerns. Implications for healthcare providers, social entrepreneurs, and policy-makers are discussed.

scholarly journals Fostering Palliative Care Through Digital Intervention: A Platform for Adult Patients With Hematologic Malignancies

2021 ◽  
Vol 3 ◽  
Author(s):  
Lefteris Koumakis ◽  
Fatima Schera ◽  
Heather Parker ◽  
Panos Bonotis ◽  
Maria Chatzimina ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Healthcare Providers ◽  
Real Life ◽  
Hematologic Malignancies ◽  
Decision Making Process ◽  
Joint Decision ◽  
Horizon 2020 ◽  
Patient Reported ◽  
Potential Impact

Patient-reported outcomes (PROs) are an emerging paradigm in clinical research and healthcare, aiming to capture the patient's self-assessed health status in order to gauge efficacy of treatment from their perspective. As these patient-generated health data provide insights into the effects of healthcare processes in real-life settings beyond the clinical setting, they can also be viewed as a resolution beyond what can be gleaned directly by the clinician. To this end, patients are identified as a key stakeholder of the healthcare decision making process, instead of passively following their doctor's guidance. As this joint decision-making process requires constant and high-quality communication between the patient and his/her healthcare providers, novel methodologies and tools have been proposed to promote richer and preemptive communication to facilitate earlier recognition of potential complications. To this end, as PROs can be used to quantify the patient impact (especially important for chronic conditions such as cancer), they can play a prominent role in providing patient-centric care. In this paper, we introduce the MyPal platform that aims to support adults suffering from hematologic malignancies, focusing on the technical design and highlighting the respective challenges. MyPal is a Horizon 2020 European project aiming to support palliative care for cancer patients via the electronic PROs (ePROs) paradigm, building upon modern eHealth technologies. To this end, MyPal project evaluate the proposed eHealth intervention via clinical studies and assess its potential impact on the provided palliative care. More specifically, MyPal platform provides specialized applications supporting the regular answering of well-defined and standardized questionnaires, spontaneous symptoms reporting, educational material provision, notifications etc. The presented platform has been validated by end-users and is currently in the phase of pilot testing in a clinical study to evaluate its feasibility and its potential impact on the quality of life of palliative care patients with hematologic malignancies.

Self-determination and safety: an ethical crossroad

2020 ◽  
Author(s):  
Widian Nicola
Keyword(s):  
Decision Making ◽  
Social Workers ◽  
Social Worker ◽  
Healthcare Providers ◽  
Self Determination ◽  
Community Safety ◽  
Decision Making Process ◽  
Ethical Decisions ◽  
The Social ◽  
Life Circumstances

Self-determination is a pathway by which individuals can safeguard as well as define their sense of safety. However, when an individual’s sense of safety is placed at risk, particularly within the context of community, safety can become illusive. Due to safety’s subjective nature, social workers and healthcare providers are invited to examine closely the roles they play to uphold a client’s self-determination, as well as manage risk as instruments of the healthcare programmes we represent, within the context of community and amid our clients’ challenging and oftentimes complex life circumstances. These ethical junctures offer practitioners an opportunity to examine how personal and collective ethical decisions are made, particularly through the lens of the ethics of care, which aims to place relationality at the forefront of the decision-making process. This clinical ethnographic narrative examines several ethical junctures I faced as the social worker to an elderly client diagnosed with schizophrenia.

scholarly journals Decision-making process of households on food consumption 

2012 ◽  
Vol 52 (No. 7) ◽  
pp. 328-334 ◽  
Author(s):  
A. Melicharová
Keyword(s):  
Decision Making ◽  
Food Consumption ◽  
Search Costs ◽  
Decision Making Process ◽  
Lower Income ◽  
Income Levels ◽  
The Core ◽  
Keynesian Theory ◽  
The Relationship ◽  
Household Choice

Decision-making process of households on food consumption is discussed in the post-Keynesian theory of household choice. Since the core assumption of uncertainty is employed, the set of consumption alternatives is restricted to the subset of the known ones. When searching for these alternatives, the consumer faces the search costs expressed by time of search. The sample of Czech households was investigated to ascertain the volume of the search and 57% of households do not seek for any information that are relevant for decision-making on foodstuff purchase. To overcome this activity, the households more likely rely on prices and the range of goods of the closest sellers to them. Searching for information on product is replaced by reliance on habits and recommendations of the others. On the contrary, the uncertainty of real purchase power is of lower significance in food consumption, because the foodstuffs meet the basic physiological needs and dispose of constrained stability in storage. Thus, households cannot always postpone (or bring forward) their consumption. In order to deal with the lack of money, households from lower income levels reduce their expenditures for foodstuffs more often than those from the higher income levels. Consequently, the relationship between the level of income and needs satiation is outlined. 

scholarly journals Does Health Literacy of Hemodialyzed Patients Predict the Type of Their Vascular Access? A Cross-Sectional Study on Slovak Hemodialyzed Population

2020 ◽  
Vol 17 (2) ◽  
pp. 675 ◽  
Author(s):  
Martina Zavacka ◽  
Ivana Skoumalova ◽  
Andrea Madarasova Geckova ◽  
Jaroslav Rosenberger ◽  
Peter Zavacky ◽  
...  
Keyword(s):  
Decision Making ◽  
Health Literacy ◽  
Vascular Access ◽  
Healthcare Providers ◽  
Venous Catheter ◽  
Good Health ◽  
Decision Making Process ◽  
Clinical Factor ◽  
Cross Sectional ◽  
Essential Condition

Effective vascular access (VA) is an essential condition for providing hemodialysis, affecting patients’ health outcomes. We aim to explore how health literacy (HL) as a non-clinical factor is associated with the decision-making process regarding VA type selection. Using data from 20 dialysis centers across Slovakia (n = 542, mean age = 63.6, males = 60.7%), the association of HL with type of VA (arteriovenous fistula (AVF) vs. central venous catheter (CVC)) was analyzed using a logistic regression model adjusted for sociodemographic characteristics and comorbidity. Sociodemographic data and data on nine domains of HL were collected by questionnaire. Data on VA and comorbidity were obtained from a medical records. Patients with a greater ability to engage with healthcare providers (odds ratio (OR): 1.34; 95% confidence interval (CI): 1.00–1.78), those with a better ability to navigate the healthcare system (OR: 1.41; 95% CI: 1.08–1.85), those more able to find good health information (OR: 1.52; 95% CI: 1.15–2.03), and those who understand it well enough to know what to do (OR: 1.52; 95% CI: 1.12–2.06) are more likely to have AVF. Patients’ HL is associated with the type of VA; therefore, it should be considered in the decision-making process regarding the selection of the type of VA, thereby informing strategies for improving patients’ HL and doctor–patient communication.

scholarly journals Medical Care-Related Decisions among Patients Diagnosed with Early Stage Malignant Brain Tumor: A Qualitative Study

2020 ◽  
Vol 7 ◽  
pp. 233339362096005
Author(s):  
Hanako Numata ◽  
Maiko Noguchi-Watanabe ◽  
Akitake Mukasa ◽  
Shota Tanaka ◽  
Shunsaku Takayanagi ◽  
...  
Keyword(s):  
Decision Making ◽  
Medical Care ◽  
Early Stage ◽  
Healthcare Providers ◽  
Decision Making Process ◽  
Theory Approach ◽  
Structured Interviews ◽  
Fear And Anxiety ◽  
Grounded Theory Approach ◽  
Insight Into

Medical care-related decision-making among patients with malignant brain tumors has not been sufficiently discussed. This study aimed to develop a framework for understanding patients’ experiences in the decision-making process. Semi-structured interviews with 14 patients were analyzed using a grounded theory approach, focusing on their 48 decision-making points. Additionally, interviews with two family members and seven healthcare providers, and participant observations were used to gain contextual insight into patients’ experiences. Patients faced decisions while they struggled in vulnerability under shock, fear, and anxiety while hoping. Under this context, they showed four decision-making patterns: (1) led by the situation, (2) controlled by others, (3) entrusted someone with the decision, and (4) myself as a decision-making agent. Across these patterns, the patients were generally satisfied with their decisions even when they did not actively participate in the process. Healthcare providers need to understand patients’ contexts and their attitudes toward yielding decision-making to others.

scholarly journals Integrated Sustainability Assessment of Divergent Mediterranean Farming Systems: Cyprus as a Case Study

2020 ◽  
Vol 12 (15) ◽  
pp. 6105 ◽  
Author(s):  
Andreas Stylianou ◽  
Despina Sdrali ◽  
Constantinos D. Apostolopoulos
Keyword(s):  
Decision Making ◽  
Agricultural Sector ◽  
Sustainability Assessment ◽  
Agricultural Practices ◽  
Farming Systems ◽  
Visual Presentation ◽  
Decision Making Process ◽  
Mediterranean Regions ◽  
Big Picture ◽  
Using Data

A variety of indicator-based methods have been developed for the sustainability assessment of farming systems (FSs). However, many of them lack holisticity, focus on a specific agricultural sector/product, and do not provide aggregated results to better support decision-making process. The goal of this study was, for the first time, to assess, in a holistic manner, the sustainability performance of different FSs in southeastern Cyprus. The methodological framework involved three major steps. First, the sustainability context was set, and a list of 41 environmental, social, and economic indicators was created. The indicators were then calculated using data from 324 farms. Second, six FSs were identified using multivariate analysis. Finally, the sustainability of FSs was assessed by combining numerical (construction of four composite sustainability indices) and visual (presentation of indicator scores and values with graphs and tables) integration approaches. While the indices provided the “big picture”, visual integration revealed the areas where policy interventions are needed. The analysis showed that sustainable agricultural practices are already used by some farmers in the area. The results could be used for benchmarking purposes and to aid decision-making process in Cyprus but might also be useful for other Mediterranean regions with similar agro-ecological conditions.

A Decision Support Tool for Allogenic Hematopoietic Stem Cell Transplantation for Children: An Acceptability and Usability Study (Preprint)

2021 ◽  
Author(s):  
Anirudh Veludhandi ◽  
Diana Ross ◽  
Cynthia Sinha ◽  
Courtney McCracken ◽  
Nitya Bakshi ◽  
...  
Keyword(s):  
Decision Making ◽  
Stem Cell ◽  
Decision Support ◽  
Hematopoietic Stem Cell Transplantation ◽  
Decision Aid ◽  
Healthcare Providers ◽  
Decision Support Tool ◽  
Decision Making Process ◽  
Hematopoietic Stem ◽  
Support Tool

BACKGROUND Individuals living with sickle cell disease (SCD) may benefit from a variety of disease-modifying therapies including hydroxyurea, voxelotor, crizanlizumab, L-Glutamine, and chronic blood transfusions, but allogenic hematopoietic stem cell transplantation (HCT) remains the only treatment with curative intent. Since HCT outcomes can be influenced by the complex interaction of several risk factors, HCT can be a difficult decision for healthcare providers to make for their SCD patients. OBJECTIVE The objective of this study was to determine the acceptability and usability of a prototype decision support tool to healthcare providers in decision making about HCT for SCD in conjunction with patients and their families. METHODS Based on published transplant registry data, we developed the Sickle Options decision support tool which provides healthcare providers with personalized transplant survival and risk estimates for their patients to help them make informed decisions regarding their patients’ management of SCD. To evaluate the tool for its acceptability and usability, we conducted beta-tests of the tool and surveys with physicians using the Ottawa Decision Support framework (ODSF) and mHealth App Usability Questionnaire (MAUQ) respectively. RESULTS On the MAUQ survey, the overall usability of the tool was high (mean 6.15, SD 0.79, 4.2-7). On the ODSF survey, acceptability of the decision support tool’s presentation of information was also high (mean 2.94, SD 0.63, 2-4) but mixed regarding the tool’s amount of it (mean 2.59, SD 0.5, 2-3). 87% of participants expressed that they would use the tool in their own patient consults, with 89% suggesting that the tool would ease the decision-making process regarding HCT. The four major emergent themes from the qualitative analysis of participant beta-tests include user interface, data content, usefulness during a patient consult, and potential for a patient-focused decision aid. A majority of participants welcomed the idea of a patient-focused decision aid but suggested to provide more background on HCT and a simplification of medical terminology. CONCLUSIONS We report the development, acceptability, and usability of a prototype decision support tool app to provide individualized risk and survival estimates to patients interested in HCT. The use of such a tool may encourage better physician-patient collaboration regarding the decision-making process and help to deliver evidence-based care to patients. Further incorporation of patient-specific measures including the HCT co-morbidity index and quality of life (QoL) post-transplant may improve the applicability of the decision support tool in a healthcare setting.

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