JOHANNES J M VAN DELDEN
Biographic Data
| ID | 6182256 |
|---|---|
| NAME | JOHANNES J M VAN DELDEN |
| GIVEN NAMES | JOHANNES J M |
| FAMILY NAME | VAN DELDEN |
| SIGNATURE | VAN DELDEN J J M |
| AFFILIATIONS | University Medical Center Utrecht |
| ORCID | 0000-0002-5530-7275 |
| VERIFIED | Yes |
| TOTAL WORKS | 16 |
| TOTAL CITATIONS | 31 |
| AUTHOR COUNT | 16 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 1993 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 2 |
Moral Attitudes on Somatic Gene Editing for Inherited Cardiomyopathy
This qualitative study aims to understand the moral attitudes of key stakeholders toward the development of somatic gene editing for inherited cardiomyopathy. Patients are waiting on effective treatment for inherited cardiomyopathies, including those caused by PLN and LMNA mutations. Somatic gene editing, particularly prime and base editing, is being explored as a potential therapeutic strategy. Development of these technologies requires insight …
Why We Need a Dynamic Right to Withdraw in Individualized Antisense Oligonucleotide Therapy Development
Individualized therapies for ultra-rare diseases blur the lines between clinical care and medical research, creating emotional and practical entanglements. These entanglements, in the absence of clear ethical guidelines, put pressure on the fundamental right to withdraw. Conventional ethical guidelines treat withdrawal as absolute, unconditional, complete, and immediate; yet, in personalized therapies, abrupt withdrawal can mean significant scien…
The Role of Social Value in Data‐Intensive Health Research
Data‐intensive health research complicates traditional requirements for informed consent, due to the amount of data contributors and data points, the open‐ended nature of research questions, and repeated or secondary data use. To still enable data‐intensive health research, there is a move towards other—generally lower—standards for consent such as opt‐out systems, in current developments such as the European Health Data Space (EHDS). This is pre…
Experiences with an Advance Care Planning Intervention for Children with Life-Limiting Conditions
Background: Advance care planning is a strategy to define goals and preferences for future care and treatment aligned to patient values. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT) provides a holistic, family-oriented approach to involve families of children with life-limiting conditions and their clinicians in ACP, starting early in disease trajectories. This study explores how children with life-limiting conditions, and th…
Measurement instruments for perspective-taking
AIM: Perspective-taking is increasingly valued as an important competence to deliver person-centered care. It is conceptualized as a facet of cognitive empathy, but also connected to other attitudes and competences. Multiple studies report on educational interventions focused on perspective-taking, but an overview of instruments to measure perspective-taking is lacking. This scoping review aims to get insight into the instruments currently used t…
Experiences and perceptions of continuous deep sedation
BACKGROUND: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS. OBJECTIVE: To describe perceptions and experiences of patients and relatives…
Patient and family caregiver perspectives of Advance Care Planning
Advance Care Planning (ACP) is widely regarded as a component of good end-of-life care. However, findings from a qualitative international study of patient and family caregiver attitudes and preferences regarding ACP highlight participants’ ambivalence towards confronting the future and the factors underlying their motivation to accept or defer anticipatory planning. They show how ACP impacts on, and can be determined by, relationships between pa…
Requests for euthanasia or assisted suicide of people without (severe) illness
BACKGROUND: Some people request euthanasia or assisted suicide (EAS) even though they are not (severely) ill. In the Netherlands the presence of sufficient medical ground for the suffering is a strict prerequisite for EAS. The desirability of this 'medical ground'-boundary is currently questioned. Legislation has been proposed to facilitate EAS for older persons with "completed life" or "tiredness of life" in the absence of (severe) illness. OBJE…
Learning accountable governance
Current challenges to sustaining public support for health data research have directed attention to the governance of data-intensive health research networks. Accountability is hailed as an important element of trustworthy governance frameworks for data-intensive health research networks. Yet the extent to which adequate accountability regimes in data-intensive health research networks are currently realized is questionable. Current governance of…
How should the ‘privilege’ in therapeutic privilege be conceived when considering the decision-making process for patients with borderline capacity
Therapeutic privilege (TP) is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it mig…
Definition and recommendations for advance care planning
Comparatively low attendance during Human Papillomavirus catch-up vaccination among teenage girls in the Netherlands
This study revealed several determinants for HPV vaccination uptake after implementation of the HPV vaccine for adolescent girls. These determinants should be taken into consideration in order to successfully implement HPV vaccination into National Immunization Programs
End-of-Life Decision-Making in Canada
Autonomy in an ascribed relationship
The implications of today's family structures for support giving to older parents
There is considerable debate about the effects of today's family structures on support arrangements for older people. Using representative data from The Netherlands, the study reported in this paper investigates which socio-demographic characteristics of adult children and their elderly parents, and which motivations of the adult children, correlate with children giving practical and social support to their parents. The findings indicate that the…
The Remmelink Study Two Years Later
The Remmelink Committee published its report on medical decisions at\nthe end of life in the Netherlands in September 1991. As a result, the Dutch\ndebate about physician aid-in-dying has been broadened to include\nlife-terminating acts that have not been explicitly requested by the\npatient....In this article, after a short description of the main results, we\nwill discuss the impact of our report to the Remmelink Committee on the Dutch\ndebate …
The implications of today's family structures for support giving to older parents
There is considerable debate about the effects of today's family structures on support arrangements for older people. Using representative data from The Netherlands, the study reported in this paper investigates which socio-demographic characteristics of adult children and their elderly parents, and which motivations of the adult children, correlate with children giving practical and social support to their parents. The findings indicate that the…
Autonomy in an ascribed relationship
The Remmelink Study Two Years Later
The Remmelink Committee published its report on medical decisions at\nthe end of life in the Netherlands in September 1991. As a result, the Dutch\ndebate about physician aid-in-dying has been broadened to include\nlife-terminating acts that have not been explicitly requested by the\npatient....In this article, after a short description of the main results, we\nwill discuss the impact of our report to the Remmelink Committee on the Dutch\ndebate …
The implications of today's family structures for support giving to older parents
There is considerable debate about the effects of today's family structures on support arrangements for older people. Using representative data from The Netherlands, the study reported in this paper investigates which socio-demographic characteristics of adult children and their elderly parents, and which motivations of the adult children, correlate with children giving practical and social support to their parents. The findings indicate that the…
Autonomy in an ascribed relationship
End-of-Life Decision-Making in Canada
Comparatively low attendance during Human Papillomavirus catch-up vaccination among teenage girls in the Netherlands
This study revealed several determinants for HPV vaccination uptake after implementation of the HPV vaccine for adolescent girls. These determinants should be taken into consideration in order to successfully implement HPV vaccination into National Immunization Programs
Definition and recommendations for advance care planning
How should the ‘privilege’ in therapeutic privilege be conceived when considering the decision-making process for patients with borderline capacity
Therapeutic privilege (TP) is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it mig…
Requests for euthanasia or assisted suicide of people without (severe) illness
BACKGROUND: Some people request euthanasia or assisted suicide (EAS) even though they are not (severely) ill. In the Netherlands the presence of sufficient medical ground for the suffering is a strict prerequisite for EAS. The desirability of this 'medical ground'-boundary is currently questioned. Legislation has been proposed to facilitate EAS for older persons with "completed life" or "tiredness of life" in the absence of (severe) illness. OBJE…
Learning accountable governance
Current challenges to sustaining public support for health data research have directed attention to the governance of data-intensive health research networks. Accountability is hailed as an important element of trustworthy governance frameworks for data-intensive health research networks. Yet the extent to which adequate accountability regimes in data-intensive health research networks are currently realized is questionable. Current governance of…
Experiences and perceptions of continuous deep sedation
BACKGROUND: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS. OBJECTIVE: To describe perceptions and experiences of patients and relatives…
Patient and family caregiver perspectives of Advance Care Planning
Advance Care Planning (ACP) is widely regarded as a component of good end-of-life care. However, findings from a qualitative international study of patient and family caregiver attitudes and preferences regarding ACP highlight participants’ ambivalence towards confronting the future and the factors underlying their motivation to accept or defer anticipatory planning. They show how ACP impacts on, and can be determined by, relationships between pa…
Measurement instruments for perspective-taking
AIM: Perspective-taking is increasingly valued as an important competence to deliver person-centered care. It is conceptualized as a facet of cognitive empathy, but also connected to other attitudes and competences. Multiple studies report on educational interventions focused on perspective-taking, but an overview of instruments to measure perspective-taking is lacking. This scoping review aims to get insight into the instruments currently used t…
Moral Attitudes on Somatic Gene Editing for Inherited Cardiomyopathy
This qualitative study aims to understand the moral attitudes of key stakeholders toward the development of somatic gene editing for inherited cardiomyopathy. Patients are waiting on effective treatment for inherited cardiomyopathies, including those caused by PLN and LMNA mutations. Somatic gene editing, particularly prime and base editing, is being explored as a potential therapeutic strategy. Development of these technologies requires insight …
Why We Need a Dynamic Right to Withdraw in Individualized Antisense Oligonucleotide Therapy Development
Individualized therapies for ultra-rare diseases blur the lines between clinical care and medical research, creating emotional and practical entanglements. These entanglements, in the absence of clear ethical guidelines, put pressure on the fundamental right to withdraw. Conventional ethical guidelines treat withdrawal as absolute, unconditional, complete, and immediate; yet, in personalized therapies, abrupt withdrawal can mean significant scien…
The Role of Social Value in Data‐Intensive Health Research
Data‐intensive health research complicates traditional requirements for informed consent, due to the amount of data contributors and data points, the open‐ended nature of research questions, and repeated or secondary data use. To still enable data‐intensive health research, there is a move towards other—generally lower—standards for consent such as opt‐out systems, in current developments such as the European Health Data Space (EHDS). This is pre…
Experiences with an Advance Care Planning Intervention for Children with Life-Limiting Conditions
Background: Advance care planning is a strategy to define goals and preferences for future care and treatment aligned to patient values. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT) provides a holistic, family-oriented approach to involve families of children with life-limiting conditions and their clinicians in ACP, starting early in disease trajectories. This study explores how children with life-limiting conditions, and th…
Medicine (9 works) · Psychology (9 works) · Palliative Care and End-of-Life Issues (6 works) · Political science (6 works) · Nursing (5 works) · Autonomy (4 works) · Computer Science (4 works) · Palliative care (4 works) · Qualitative research (4 works) · Social Psychology (4 works)