In this paper, we explore the desires that play a role at the palliative stage and relate them to various approaches to patient autonomy. What attitude can physicians and other caregivers take to the desires of patients at the palliative stage? We examine this question by introducing five physicians who are consulted by Jackie, an imaginary patient with metastatic lung carcinoma. By combining the models of the physician-patient relationship developed by Emanuel and Emanuel (1992) and the Hellenistic approaches to desires analyzed by Nussbaum (1994), five different ways of dealing with desires in the context of palliative care are sketched. The story of Jackie shows that desires are to a certain extent responsive to reasoning. In the palliative process, that can be a reason to devote attention to the desires of patients and caregivers and to determine which desires need to be fulfilled, which are less important, and how they are linked to emotions the patient has.
DOCUMENT
Background: There is an emergence of mobile health (mHealth) interventions to support self-management in patients with chronic obstructive pulmonary disease (COPD). Recently, an evidence-driven mHealth intervention has been developed to support patients with COPD in exacerbation-related self-management: the Copilot app. Health care providers (HCPs) are important stakeholders as they are the ones who have to provide the app to patients, personalize the app, and review the app. It is, therefore, important to investigate at an early stage whether the app is feasible in the daily practice of the HCPs. Objective: The aim of this study is to evaluate the perceived feasibility of the Copilot app in the daily practice of HCPs. Methods: A multimethods design was used to investigate how HCPs experience working with the app and how they perceive the feasibility of the app in their daily practice. The feasibility areas described by Bowen et al were used for guidance. HCPs were observed while performing tasks in the app and asked to think aloud. The System Usability Scale was used to investigate the usability of the app, and semistructured interviews were conducted to explore the feasibility of the app. The study was conducted in primary, secondary, and tertiary care settings in the Netherlands from February 2019 to September 2019. Results: In total, 14 HCPs participated in this study—8 nurses, 5 physicians, and 1 physician assistant. The HCPs found the app acceptable to use. The expected key benefits of the app were an increased insight into patient symptoms, more structured patient conversations, and more tailored self-management support. The app especially fits within the available time and workflow of nurses. The use of the app will be influenced by the autonomy of the professional, the focus of the organization on eHealth, costs associated with the app, and compatibility with the current systems used. Most HCPs expressed that there are conditions that must be met to be able to use the app. The app can be integrated into the existing care paths of primary, secondary, and tertiary health care settings. Individual organizational factors must be taken into account when integrating the app into daily practice. Conclusions: This early-stage feasibility study shows that the Copilot app is feasible to use in the daily practice of HCPs and can be integrated into primary, secondary, and tertiary health care settings in the Netherlands. The app was considered to best fit the role of the nurses. The app will be less feasible for those organizations in which many conditions need to be met to use the app. This study provides a new approach to evaluate the perceived feasibility of mHealth interventions at an early stage and provides valuable insights for further feasibility testing.
DOCUMENT
Acne vulgaris is considered one of the most common medical skin conditions globally, affecting approximately 85% of individuals worldwide. While acne is most prevalent among adolescents between 15 to 24 years old, it is not uncommon in adults either. Acne addresses a number of different challenges, causing a multidimensional disease burden. These challenges include clinical sequelae, such as post inflammatory hyperpigmentation (PIH) and the chance of developing lifelong disfiguring scars, psychological aspects such as deficits in health related quality of life, chronicity of acne, economic factors, and treatment-related issues, such as antimicrobial resistance. The multidimensionality of the disease burden stipulates the importance of an effective and timely treatment in a well organised care system. Within the Netherlands, acne care provision is managed by several types of professional care givers, each approaching acne care from different angles: (I) general practitioners (GPs) who serve as ‘gatekeepers’ of healthcare within primary care; (II) dermatologists providing specialist medical care within secondary care; (III) dermal therapists, a non-physician medical professional with a bachelor’s degree, exclusively operating within the Australian and Dutch primary and secondary health care; and (IV) beauticians, mainly working within the cosmetology or wellness domain. However, despite the large variety in acne care services, many patients experience a delay between the onset of acne and receiving an effective treatment, or a prolonged use of care, which raises the question whether acne related care resources are being used in the most effective and (cost)efficient way. It is therefore necessary to gain insights into the organization and quality of Dutch acne health care beyond conventional guidelines and protocols. Exploring areas of care that may need improvement allow Dutch acne healthcare services to develop and improve the quality of acne care services in harmony with patient needs.
DOCUMENT
