Developing a person-centred care environment aiming to enhance the autonomy of nursing home residents with physical impairments, a descriptive study
Research
Jolande van Loon, Meriam Janssen, Bienke Janssen, Ietje de Rooij, Katrien Luijkx
BMC Geriatrics, 15 November 2023
Open Access
Abstract
Background
Enhancing autonomy is important within the context of the care environment in nursing homes. A nursing home is a place for older adults with physical impairments, who need assistance, to live and where staff work who help them to exercise autonomy. Previous research shows that older adults and staff are influenced by the care environment to apply autonomy-enhancing activities. Therefore, organisational policies regarding the care environment seem promising for enhancing autonomy. The aim is to gain a deeper insight into the development and implementation of organisational policies aimed to enhance the autonomy of older adults with physical impairments.
Methods
A qualitative descriptive design was chosen, using two methods. A document study was conducted on the policies, plans and proceedings in two care organisations. Moreover, interviews were conducted with 17 stakeholders involved in the policies, such as managers and members of the client council. The fragments of the 137 documents and 17 verbatim transcripts were coded and deductively categorised into the seven aspects (i.e., power-sharing, supportive organisational systems, appropriate skill mix, potential for innovation and risk-taking, the physical environment, effective staff relationships and shared decision-making systems) of the key domain care environment, as defined in the person-centred practice (PCP) framework developed by McCormack and McCance.
Results
The aspect of power-sharing was used the most in the policies of the two participating organisations. The organisations expected much from the implementation of indirect interventions, such as access to the electronic care plan for residents and the development of staff towards self-managing teams. Less attention was paid to interventions in the physical environment, such as the interior of the building and privacy, and the collaboration processes between staff.
Conclusions
The PCP framework poses that all aspects of the key domain care environment are important to develop a person-centred practice. This is not yet the case in practice and the authors therefore recommend using all seven aspects of the care environment in a balanced combination with the other key domains of the PCP framework to achieve person-centred practice and as a result the enhancement of the autonomy of nursing home residents with physical impairments.
Month: December 2023
Protecting Personhood: A Classic Grounded Theory
Protecting Personhood: A Classic Grounded Theory
Research Article
Amélia Didier, Alvita Nathaniel, Helen Scott, Susanne Look, Lazare Benaroyo, Maya Zumstein-Shaha
Qualitative Health Research, 5 September 2023
Open Access
Abstract
The importance of perceiving and considering patients as healthcare partners has been increasingly promoted. Healthcare systems around the world are now highly interested in patient engagement, participation, collaboration, and partnership. Healthcare professionals are advised that patients, as autonomous beings, should be active in and responsible for a portion of their own care. The study presented here focused on patients’ perceptions of interprofessional collaboration. It was conducted using the classic grounded theory methodology. The theory of protecting personhood emerged as the core concept of hospitalized patients, cared for by interprofessional healthcare teams. This theory encapsulates the process hospitalized patients go through to find balance in their sense of self, oscillating between personhood and patienthood in the unfamiliar hospital environment. The process consists of four stages: the stage of introspection, during which hospitalized patients become aware of their self as a person and as a patient; the stage of preservation, when patients find a balance between the sense of personhood and patienthood; the stage of rupture, wherein patients experience an imbalance between their sense of personhood and patienthood; and the stage of reconciliation, in which personhood is restored. The theory of protecting personhood offers insights into a better understanding of hospitalized patients’ experiences and strategies, revealing the importance of relationships, and the driving force of empowerment. This study is about patients’ perspectives of interprofessional healthcare teams. A grounded theory process allowed the emergence of patients’ concerns and expectations, leading to a substantive theory grounded in the patients’ data.
Ambivalence and regret in genome sequencing
Ambivalence and regret in genome sequencing
Editorial
Alisdair McNeill
European Journal of Human Genetics, 21 November 2023
Excerpt
…Consent conversations relating to genome sequencing for children are recognised as being potentially problematic. Given the vast number of potential outcomes of genome sequencing (e.g. no diagnosis, incidental finding), it has been disputed if ‘informed’ consent can be achieved. A qualitative study of medical geneticists views on consent for genome sequencing in paediatrics provides useful insights. One view was that truly informed consent for genome sequencing in paediatrics is not possible. The need for more genetics professionals and better information resources for families was recognised. A further issue around informed consent in genetics is around that of reuse of genetic information and data in research projects…
Consumer Genetics: What About Informed Consent?
Consumer Genetics: What About Informed Consent?
Research Article
Matt Artz, Doug Henry, Carolina Severiche Mena
Human Organization, 17 November 2023; 82(4) pp 394–404
Abstract
With the dramatic rise in Direct-to-Consumer Genetics has come increasing concern for the potential abuse of consumer health data, often presumed confidential. Companies exchange and monetize their customers’ DNA in a competitive marketplace, obtaining consent through complex legal contracts that consumers must sign. However, drawing on ethnographic data, we show that this consent is rarely “informed.” Particular concerns include lack of contractual knowledge, misunderstanding of the potential benefits and risks, privacy, and low genetic literacy.
Editor’s note: Human Organization is the Journal of the Society for Applied Anthropology, “founded in 1941 to promote the investigation of the principles of human behavior and the application of these principles to contemporary issues and problems.
Uncertain futures and unsolicited findings in pediatric genomic sequencing: guidelines for return of results in cases of developmental delay
Uncertain futures and unsolicited findings in pediatric genomic sequencing: guidelines for return of results in cases of developmental delay
Research
BMC Medical Ethics, 11 November 2023
Candice Cornelis, Wybo Dondorp, Ineke Bolt, Guido de Wert, Marieke van Summeren, Eva Brilstra, Nine Knoers, Annelien L. Bredenoord
Open Access
Abstract
Background
Massively parallel sequencing techniques, such as whole exome sequencing (WES) and whole genome sequencing (WGS), may reveal unsolicited findings (UFs) unrelated to the diagnostic aim. Such techniques are frequently used for diagnostic purposes in pediatric cases of developmental delay (DD). Yet policy guidelines for informed consent and return of UFs are not well equipped to address specific moral challenges that may arise in these children’s situations.
Discussion
In previous empirical studies conducted by our research group, we found that it is sometimes uncertain how children with a DD will develop and whether they could come to possess capacities for autonomous decision-making in the future. Parents sometimes felt this brought them into a Catch-22 like situation when confronted with choices about UFs before undergoing WES in trio-analysis (both the parents’ and child’s DNA are sequenced). An important reason for choosing to consent to WES was to gain more insight into how their child might develop. However, to make responsible choices about receiving or declining knowledge of UFs, some idea of their child’s future development of autonomous capacities is needed. This undesirable Catch-22 situation was created by the specific policy configuration in which parents were required to make choices about UFs before being sequencing (trio-analysis). We argue that this finding is relevant for reconfiguring current policies for return of UFs for WES/WGS and propose guidelines that encompass two features. First, the informed consent process ought to be staged. Second, differing guidelines are required for withholding/disclosing a UF in cases of DD appropriate to the level of confidence there is about the child’s future developmental of autonomous capacities.
Conclusion
When combined with a dynamic consent procedure, these two features of our guidelines could help overcome significant moral challenges that present themselves in the situations of children undergoing genomic sequencing for clarifying a DD.
Preferences for onward health data use in the electronic age among maternity patients and providers in South Africa: a qualitative study
Preferences for onward health data use in the electronic age among maternity patients and providers in South Africa: a qualitative study
LeFevre A, Welte O, Moopelo K, Tiffin N, Mothoagae G, Ncube N, Gwiji N, Shogole M, Slogrove AL, Moshani N, Boulle A, Goudge J, Griffiths F, Fairlie L, Mehta U, Scott K, Pillay N
Sexual and Reproductive Health Matters, 20 November 2023; 31(4)
Abstract
Despite the expanding digitisation of individual health data, informed consent for the collection and use of health data is seldom explicitly sought in public sector clinics in South Africa. This study aims to identify perceptions of informed consent practices for health data capture, access, and use in Gauteng and the Western Cape provinces of South Africa. Data collection from September to December 2021 included in-depth interviews with healthcare providers (n = 12) and women (n = 62) attending maternity services. Study findings suggest that most patients were not aware that their data were being used for purposes beyond the individualised provision of medical care. Understanding the concept of anonymised use of electronic health data was at times challenging for patients who understood their data in the limited context of paper-based folders and booklets. When asked about preferences for electronic data, patients overwhelmingly were in favour of digitisation. They viewed electronic access to their health data as facilitating rapid and continuous access to health information. Patients were additionally asked about preferences, including delivery of health information, onward health data use, and recontacting. Understanding of these use cases varied and was often challenging to convey to participants who understood their health data in the context of information inputted into their paper folders. Future systems need to be established to collect informed consent for onward health data use. In light of perceived ties to the care received, these systems need to ensure that patient preferences do not impede the content nor quality of care received.
Enhancing the reuse of health data for research purposes: laws and regulations as pillars of trust
Enhancing the reuse of health data for research purposes: laws and regulations as pillars of trust
R Verheij, E B Van Veen
European Journal of Public Health, 24 October 2023
Abstract
Background
Routinely recorded health data are increasingly used for research purposes and indispensable to stimulating appropriate and sustainable health care. In many countries access to data has proven to be a challenge. Trust by researchers, organisations and the general public is key, and adherence to the rule of law is one of the key elements determining that trust. We investigated the laws and regulations regarding the reuse of health data and how they work out practically for researchers.
Methods
Our study focuses on France, Finland, Denmark, Germany, England and The Netherlands. We investigated consent mechanisms, the possibilities of record linkage, and how the sharing of data for research purposes was organised, with a combination of desk research and interviews with researchers in these countries.
Results
All countries investigated except England are subject to the General Data Protection Regulation. However, explicit consent is the default in Germany and the Netherlands, while other countries maintain an opt-out system or even a system of neither consent nor opt-out. A central data access authority is in place in all countries investigated except Germany and the Netherlands. The nature and level of detail of data varies widely.
Conclusions
GDPR does not dictate a specific modality for the reuse of data. In terms of the reuse of health data, Germany and the Netherlands are lagging. The Netherlands seems to be the only country with continuing discussions about consent modalities. A broader societal debate about the balance between trust and the reuse of health data is needed, also against the background of a European Health Data Space. In the Netherlands, widespread government distrust is one of the challenges. Options to counteract this distrust will be discussed.
Blockchain Based Dynamic Consent Management Systems for Enhancing Quality of Life for People with Disabilities
Blockchain Based Dynamic Consent Management Systems for Enhancing Quality of Life for People with Disabilities
Conference Paper
Muhammad Irfan Khalid, Mansoor Ahmed
IEEE International Smart Cities Conference, September 2023
Abstract
This research investigates the potential impact of dynamic consent management systems (DCMSs) on individuals with disabilities (PwDs). An extensive literature review found a lack of discussion regarding using advanced tools like blockchains to give PwDs control over their data in smart cities. Our study aims to fill this gap by demonstrating how blockchain-based DCMSs can improve the quality of life (QoL) for people with disabilities. We present a conceptual model that showcases the feasibility of using dynamic consent management systems to enhance the quality of life (QoL) for people with disabilities. This model emphasizes the importance of managing consent choices during their participation in research or data sharing with third parties. Using blockchain-based DCMSs, PwDs can securely exercise their data rights, maintaining privacy while enabling researchers to conduct their work. Existing works in dynamic consent management systems utilizing blockchain technology focus on security and privacy but do not address the unique needs of PwDs or their QoL. Our proposed model illustrates how blockchain-based DCMSs can positively impact people with disabilities’s quality of life. We advocate for adopting advanced tools and techniques to fully implement these models, ensuring tailored solutions for PwDs’ specific requirements.
Reproductive psychiatric advance directives: promoting autonomy for perinatal people with serious mental illness diagnoses
Reproductive psychiatric advance directives: promoting autonomy for perinatal people with serious mental illness diagnoses
Original Article
Emily C. Dossett, Sonja L. Castañeda-Cudney, Michelle T. Nguyen, Melisa Olgun, Jennifer Wang, Keris Jän Myrick, Laurie Hallmark, Elyn R. Saks
Archives of Women’s Mental Health, 10 November 2023
Open Access
Abstract
People with serious mental illness (SMI) diagnoses who become pregnant are particularly vulnerable to symptom recurrence and resulting potential lack of decision-making capacity (Taylor et al. J Psychiatr Res 104:100-107, 2018; Bagadia et al. Int J Soc Psychiatry 66:792-798, 2020). In these situations, prenatal and behavioral health providers have little legally viable guidance on what medical and/or psychiatric care the patient desires (Aneja and Arora Indian J Med Ethics V:133-139, 2020). We created a “Reproductive Psychiatric Advance Directive (PAD),” grounded in Reproductive Justice principles, that promotes patient autonomy by proactively articulating perinatal medical and psychiatric care preferences. We conducted a medical and legal literature review using two sets of terms related to (1) PADs and (2) reproductive health. We convened an expert working group of legal, medical, psychiatric, peer, and advocacy leaders and community-based organizations to develop a Reproductive PAD. Our literature review yielded no results about Reproductive PADs. We created de novo a Reproductive PAD template with sections on medical and psychiatric history, informed consent for critical medical and psychiatric care, family planning and custody preferences, and optional sections on abortion and on electroconvulsive therapy. The Reproductive PAD provides a possible legal mechanism for people of childbearing age with SMI diagnoses to articulate their medical and psychiatric care choices around reproduction and pregnancy. Future research should evaluate the Reproductive PAD as an effective tool for protecting patient autonomy during pregnancy and postpartum and guiding medical and psychiatric providers.
Childhood vaccine refusal and what to do about it: a systematic review of the ethical literature
Childhood vaccine refusal and what to do about it: a systematic review of the ethical literature
Kerrie Wiley, Maria Christou-Ergos, Chris Degeling, Rosalind McDougall, Penelope Robinson, Katie Attwell, Catherine Helps, Shevaun Drislane, Stacy M Carter
Research
BMC Medical Ethics, 8 November 2023
Open Access
Abstract
Background
Parental refusal of routine childhood vaccination remains an ethically contested area. This systematic review sought to explore and characterise the normative arguments made about parental refusal of routine vaccination, with the aim of providing researchers, practitioners, and policymakers with a synthesis of current normative literature.
Methods
Nine databases covering health and ethics research were searched, and 121 publications identified for the period Jan 1998 to Mar 2022. For articles, source journals were categorised according to Australian Standard Field of Research codes, and normative content was analysed using a framework analytical approach.
Results
Most of the articles were published in biomedical journals (34%), bioethics journals (21%), and journals that carry both classifications (20%). Two central questions dominated the literature: (1) Whether vaccine refusal is justifiable (which we labelled ‘refusal arguments’); and (2) Whether strategies for dealing with those who reject vaccines are justifiable (‘response arguments’). Refusal arguments relied on principlism, religious frameworks, the rights and obligations of parents, the rights of children, the medico-legal best interests of the child standard, and the potential to cause harm to others. Response arguments were broadly divided into arguments about policy, arguments about how individual physicians should practice regarding vaccine rejectors, and both legal precedents and ethical arguments for vaccinating children against a parent’s will. Policy arguments considered the normative significance of coercion, non-medical or conscientious objections, and possible reciprocal social efforts to offset vaccine refusal. Individual physician practice arguments covered nudging and coercive practices, patient dismissal, and the ethical and professional obligations of physicians. Most of the legal precedents discussed were from the American setting, with some from the United Kingdom.
Center for Informed Consent Integrity 