Children’s rights in medical decision-making: a review of ECtHR principles

BACKGROUND AND OBJECTIVESLittle is known about the implementation of the patient bill of rights (PBR) in Saudi Arabia. Therefore, this study was conducted to explore to what extent health care recipients and providers know about the bill and its implementation.DESIGN AND SETTINGA cross-sectional survey conducted on health care professionals and patients at Primary Health Care Centers in Riyadh, Saudi Arabia, during July 2010.PATIENTS AND METHODSThe study employed a self-administered questionnaire to collect data from 500 patients (aged 18 years or older) and 500 health care providers (physicians and nurses) in primary health care (PHC) centers in Riyadh. Data was collected on the respondents’ knowledge of the existence and contents of the bill, the extent to which the bill is implemented, and the obstacles that may hinder bill implementation. The data was analyzed and presented in a descriptive fashion.RESULTSMore than three quarters of patients and one third of PHC providers did not know about the existence of the bill. Among those who knew about its existence, about three quarters of patients and almost half of PHC providers had little (or very little) knowledge about the bill contents. In general, patients scored lower means of perception than PHC staff about the implementation of the bill’s aspects. PHC staff reported several obstacles that may hinder the implementation of the PBR in Saudi Arabia.CONCLUSIONSPatients and health care providers lack necessary knowledge about the PBR. More dissemination of information about the bill, taking into account the particularities of the Saudi population is needed. Future research is required to establish measures that are effective in ensuring that patients rights are ensured.

Ethical Issues in the Care of Emerging Adults in Pediatric Intensive Care Units.

Emerging Marketing Research on Healthcare and Medical Decision Making: Toward a Consumer-Centric and Pluralistic Methodological Perspective

This study aimed to investigate the association between Korean adults' electronic health literacy and active participation in health decision-making while communicating with healthcare providers. A total of 421 adults 18 years and older were recruited from a survey panel developed by a survey company and completed an online survey asking about individual characteristics and electronic health literacy. Data were analyzed using descriptive statistics, independent-samples t tests, analysis of variance, and binomial logistic regression analysis. In results, for every one-unit increase in electronic health literacy, the rate of active participation in health decision-making was likely to increase by 3.62 times compared with the rate of passive participation in health decision-making. It was also likely to increase in those with a college degree or higher, those who used both Web sites and YouTube, those who perceived online health information to be useful, those who actively participated as a patient, and those with a desire to actively participate as a patient. To encourage active participation in health-related situations or decision-making processes, educational programs or interventions to improve individuals' electronic health literacy are needed. Healthcare providers must ensure that individuals feel comfortable expressing their preferences, needs, and values.

The rise in Internet use for seeking health information raises questions about the role the Internet may play in how patients make medical decisions. To examine Internet use and perceived importance of different sources of information by patients making 9 specific medical decisions covering prescription medication initiation, cancer screening, and elective surgery. National sample of US adults identified by random-digit dialing. Cross-sectional survey conducted between November 2006 and May 2007. The final sample comprised 2575 English-speaking US adults aged 40 y and older who had either undergone 1 of 9 medical procedures or tests or talked with a health care provider about doing so during the previous 2 y. Participants indicated if they or other family members used the Internet to seek information related to each of the specific medical decisions and rated how important the health care provider, the Internet (if used), family and friends, and the media (newspapers, magazines, and television) were in providing information to help make the medical decision. Use of the Internet for information related to specific decisions among adults 40 y and older was generally low (28%) but varied across decisions, from 17% for breast cancer screening to 48% for hip/knee replacement. Internet use was higher at younger ages, rising from 14% among those aged 70 y and older to 38% for those aged 40 to 49 y. Internet users consistently rated health care providers as the most influential source of information for medical decisions, followed by the Internet, family and friends, and media. Telephone surveys are limited by coverage and nonresponse. The authors excluded health-related Internet use not associated with the 9 target decisions. A minority of patients reported using the Internet to make specific common medical decisions, but use varied widely by type of decision. Perhaps reflecting perceived risk and uncertainty, use was lowest for screening decisions and highest for surgical decisions.

National Variation of ADHD Diagnostic Prevalence and Medication Use: Health Care Providers and Education Policies

BackgroundThe effect of women’s autonomy in decision-making for fertility control has been highlighted by research. The objective of this study was to analyze the effect of women’s autonomy over decision-making regarding their health and access to family planning in Senegal in 2017.MethodsThe analyses in this study were carried out using data from the Senegal Demographic and Health Survey in 2017. The sample consisted of 8865 women aged 15–49. The propensity score-matching method was applied. Autonomy in health decision-making was considered the treatment variable. Matching was performed using confounding variables. The outcome variables were the current use of modern contraceptive methods and the existence of unmet needs. The common support condition had been met. The analysis was conducted using STATA.15 software.ResultsThis study showed that 6.26% of women had decision-making autonomy in relation to their health. For 80.33% of the women, their husbands/partners made health-related decisions for them. Decision-making autonomy increased significantly with the age of the woman (p < 0.05). In addition, 15.24% of women were using a modern method of contraception. An estimated 26.2% of women had unmet needs. Propensity score matching split the women into two groups based on autonomy over decision-making for their health. After matching, there was no longer a significant difference between women who were autonomous with respect to their decision-making and those who were not autonomous with respect to their current use of a modern contraceptive method. On the other hand, there was a 14.42% reduction (p < 0.05) in unmet needs for family planning in the group of women who were autonomous with respect to their health decision-making.ConclusionAutonomy in health decision-making would reduce unmet needs among Senegalese women. These results show the importance of accounting for gender in health interventions for the accessibility of family planning services.

In mainland China, awareness of disease of elderly cancer patients largely relies on the patients' families. We developed a staged procedure to improve their awareness of disease. Participants were 224 elderly cancer patients from 9 leading hospitals across Southern China. A questionnaire was given to the oncologists in charge of each patient to evaluate the interaction between family and patients, patient awareness of their disease and participation in medical decision-making. After first cycles of treatment, increased information of disease was given to patients with cooperation of the family. Then patient awareness of their disease and participation in medical decision-making was documented. Among the 224 cancer elderly patients, 26 (11.6%) made decisions by themselves and 125 (55.8%) delegated their rights of decision- making to their family. Subordinate family members tended to play a passive role in decision-making significantly. Patients participating more in medical decision-making tended to know more about their disease. However, in contrast to the awareness of disease, patient awareness of violation of medical recommendations was reversely associated with their participation in medical decision-making. Improvement in awareness of diagnosis, stages and prognosis was achieved in about 20% elderly cancer patients. About 5% participated more actively in medical decision-making. Chinese elderly cancer patient awareness of disease and participation in medical decision-making is limited and relies on their family status. The staged procedure we developed to improve patient awareness of disease proved effective.

In the past, minors were not considered legally capable of making medical decisions and were viewed as incompetent because of their age. The authority to consent or refuse treatment for a minor remained with a parent or guardian. This parental authority was derived from the constitutional right to privacy regarding family matters, common law rule, and a general presumption that parents or guardians will act in the best interest of their incompetent child. However, over the years, the courts have gradually recognized that children younger than 18 years who show maturity and competence deserve a voice in determining their course of medical treatment. This article will explore the rights and interests of minors, parents, and the state in medical decision making and will address implications for nursing administrators and leaders.

Compliance

Although modern medical practice emphasizes the importance of empowering consumers to participate in medical decisions, consumers often report having less say than they desire. Three experiments demonstrate that increasing the fluency with which medical decisions are communicated can increase participation: consumers were more likely to participate in medical treatment decisions (vs. delegate to a medical professional) when information about their options was presented in a fluent (vs. disfluent) format. Fluency increases participation by increasing subjective comprehension (i.e., by making people feel like they better understand the choice and feel more confident in their ability to choose), independent of objective comprehension. The effect of fluency was strongest among consumers with inadequate health literacy and under time pressure and persisted regardless of past experience. Together, these studies suggest that policies aimed at making medical information easier to process can empower consumers to participate in decisions regarding their health.

IntroductionThe idea of customers' empowerment in healthcare emerged in response to the rising concern that customers or patients should be able to play a critical role in improving their own health. In traditional healthcare practices, a patient is the recipient of care as well as medical decisions. However, a paradigm shifthas taken place - that is, a change from patients who merely receive care to those who actively participate in their healthcare. This change emerged in the 1960s and has spread throughout the entire healthcare industry as a social movement characterised by the right to act based on informed choice, active participation, a self-help perspective, and full engagement in critical processes (Kieffer, 1984).Traditionally, healthcare providers have made most of the decisions on treatments. Indeed, the lack of participation of patients in healthcare processes was the main obstacle to the empowerment of patients as customers. Nevertheless, there will always be circumstances in which patients choose to hand over responsibility for decisions about their healthcare to providers due to the difficulty in selecting available options or the time needed to understand the health problem and the options. However, this does not undermine the proposition that customers' empowerment will promote efficiency and that decisions should also be made from the perspective of customers (Segal, 1998).The utilisation of information and communications technology (ICT), especially the Internet, in the healthcare sector is frequently referred to as electronic health or e-health. The main purpose of e-health is to improve healthcare management for the mutual benefit of patients and healthcare providers. One important aspect of e-health is how to manage relationships between a healthcare provider and its customers (patients) in order to create greater mutual understanding, trust, and patient involvement in decision making. Therefore, healthcare organisations are implementing Customer Relationship Management (CRM) as a strategy for managing interactions with their patients (Anshari & Almunawar, 2012). The recent Web technology (Web 2.0) facilitates customers to generate contents to accommodate both patienthealth provider and patient-patient interactions. CRM enriched with the Web 2.0 (also called CRM 2.0) provides the capability for the intensive interactions mentioned above (Anshari, Almunawar, & Low, 2012). Besides, it can be considered a technology and strategy at the same time, raising hope for the advancement of e-health initiatives around the world.The main goal of this paper is to introduce a promising future research direction which may shape the future of e-health systems. In this paper, we examine customers' expectations concerning the process of empowerment through CRM 2.0 to make customers more proficient in dealing with their own healthcare issues. A preliminary survey regarding empowerment in e-health services was conducted in Brunei Darussalam (Brunei). The Internet density in Brunei is high with over 75 percent of the population having access to the Internet, and there is a very narrow digital divide in Brunei (AITI, 2010). Internet literacy in Brunei is high, and so are people's expectations to be empowered through e-health. However, it has to be noted that the development of e-health in Brunei is still in its infancy. The future developments within the scope of e-health services in Brunei should therefore significantly focus on patients' empowerment as one of the important features required by the people. The rest of this paper is organised as follows: the following section presents the background of the study, followed by the research methodology. We then discuss the results of the study in relation to a CRM 2.0 model we propose based on this investigation.Study BackgroundMany researchers have discussed the issue of empowerment in healthcare organisations. For instance, empowerment can be analysed from the perspective of patienthealthcare provider interactions (Dijkstra, Braspenning, & Grol, 2002; Paterson, 2001; Skelton, 1997; van Dam, van der Horst, van den Borne, Ryckman, & Crebolder, 2003), or from the point of view of the patient alone (Anderson et al. …

To make informed decisions, patients must have adequate knowledge of key decision-relevant facts. To determine adults' knowledge about information relevant to common types of medication, screening, or surgery decisions they recently made. National sample of US adults identified by random-digit dialing. Cross-sectional survey conducted between November 2006 and May 2007. A total of 2575 English-speaking adults aged 40 y or older who reported having discussed the following medical decisions with a health care provider within the previous 2 y: prescription medications for hypertension, hypercholesterolemia, or depression; screening tests for colorectal, breast, or prostate cancer; or surgeries for knee/hip replacement, cataracts, or lower back pain. Participants answered knowledge questions and rated the importance of their health care provider, family/friends, and the media as sources of information. Accuracy rates varied widely across questions and decision contexts. For example, patients considering cataract surgery were more likely to correctly estimate recovery time than those patients considering lower back pain or knee/hip replacement (78% v. 29% and 39%, P < 0.001). Similarly, participants were more knowledgeable of facts about colorectal cancer screening than those who were asked about breast or prostate cancer. Finally, respondents were consistently more knowledgeable on comparable questions about blood pressure medication than cholesterol medication or antidepressants. The impact of demographic characteristics and sources of information also varied substantially. For example, blacks had lower knowledge than whites about cancer screening decisions (odds ratio [OR] = 0.57; 95% confidence interval [CI] = 0.43, 0.75; P = 0.001) and medication (OR = 0.77; 95% CI = 0.60, 0.97; P = 0.03) even after we controlled for other demographic factors. The same was not true for surgical decisions. The questions did not measure all knowledge relevant to informed decision making, were subject to recall biases, and may have assessed numeracy more than knowledge. Patient knowledge of key facts relevant to recently made medical decisions is often poor and varies systematically by decision type and patient characteristics. Improving patient knowledge about risks, benefits, and characteristics of medical procedures is essential to support informed decision making.

This cross-sectional investigation studied the association between substance use and patients' desire for autonomy in medical decision making (MDM) in two trauma settings. A total of 102 patients (age 42.7 +/- 17.4 years, 70.6% male) admitted to an orthopaedic service in Warsaw, Poland, and 1009 injured patients (age 34.6 +/- 12.8 years, 62.3% male) treated in an emergency department in Berlin, Germany, were enrolled. Patients' desire for autonomy in MDM was evaluated with the Decision Making Preference Scale of the Autonomy Preference Index. Substance use (hazardous alcohol consumption and/or tobacco use) and educational level were measured. Linear regression techniques were used to determine the association between substance use and desire for autonomy in MDM. Substance use was found to be independently associated with a reduced desire by the patient for autonomy in medical decision making. No differences in patients' desire for autonomy were observed between the study sites. Empowerment strategies that encourage smokers or patients with hazardous alcohol consumption to participate in MDM may increase the effectiveness of health promotion and injury prevention efforts in this population.

BackgroundManaging sleep is a challenging experience in early parenthood, and infant sleep problems are associated with negative outcomes within the family. A large market of devices to monitor infants’ real-time health information during sleep has emerged, including smart cameras, under-mattress sensors and wearable devices. The impacts of these products on maternal and parental mental health and medical decision-making are poorly understood.MethodsWe performed a systematic search for products detecting health data from sleeping children on the global retail platform Amazon in March 2023. A total of 11 262 unique reviews from 48 eligible products were retrieved from the USA, Canada, UK, and Australia sites and subjected to sentiment and thematic analyses to capture the characteristics of user families, contexts of device use and impacts on maternal and child health.ResultsParental anxiety and infants’ high-risk medical status were cited by families as the main reasons to purchase products. When devices worked well, their use was associated with improved parental sleep quality and decreased anxiety. However, poor device performance was commonly reported and was linked to increased parental stress and anxiety and disrupted child sleep. Users reported making medical decisions based on device output. Price, privacy, and unsafe use of devices emerged as ethical issues.ConclusionsUse of a smart sleep device in the home is common and has implications for the health of both children and adults. Benefits and harms must be understood by parents and healthcare providers in order to support evidence-based decision-making around their use.