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7. Development, Implementation, and Evaluation of an Advance Care Planning Program for Professionals in Palliative Care of People with Intellectual Disability

Author

Voss, Hille, Vogel, Anique G. F. M., Wagemans, Annemieke M. A., Francke, Anneke L., Metsemakers, Job F. M., Courtens, Annemie M., and de Veer, Anke J. E.

Abstract

In this article we describe how an advance care planning (ACP) program was developed, implemented, and evaluated. Our aim was to improve ACP in palliative care for people with intellectual disability (ID). The program was based on 10 competencies needed for ACP and was developed in a co-design process with people with ID, relatives, and professionals. The program was implemented in six ID care organizations in the Netherlands and consisted of an information pack, a training course, and an implementation interview about implementing ACP. Professionals indicated that their competencies had improved, particularly regarding communication and the application of ACP as a standard element in palliative care practice. This program therefore seems helpful in training ID care professionals in the competencies needed for ACP.

Published
2021
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12. What Is Important for Advance Care Planning in the Palliative Phase of People with Intellectual Disabilities? A Multi-Perspective Interview Study

Author

Voss, Hille, Vogel, Anique, Wagemans, Annemieke M. A., Francke, Anneke L., Metsemakers, Job F. M., Courtens, Annemie M., and Veer, Anke J. E.

Abstract

Background: Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities. Method: In-depth interviews were conducted with people with intellectual disabilities (n = 5), relatives (n = 7) and professional caregivers (n = 8). Qualitative data were analysed inductively, using the principles of thematic analysis. Results: Important themes in ACP were as follows: tailoring care, working as a team and taking and giving time. The perceived role of people with intellectual disabilities in ACP was to express their wishes. Relatives had a signalling, representing and contributing role. Professionals felt their role was to inform, collaborate and coordinate. Conclusions: A staff training programme about ACP should cover how to build and maintain close relationships, provide a safe environment and address ACP as an integral part of care.

Published
2020
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18. Lessons learned from the development of a national registry on dementia care and support based on linked national health and administrative data.

Author

van der Heide, Iris, Francke, Anneke L., Döpp, Carola, Heins, Marianne, van Hout, Hein P. J., Verheij, Robert A., and Joling, Karlijn J.

Subjects
*DEMENTIA, *MEDICAL personnel, *SECONDARY care (Medicine), *LONG-term health care, *PRIMARY care
Abstract

Introduction: This paper provides insight into the development of the Dutch Dementia Care and Support Registry and the lessons that can be learned from it. The aim of this Registry was to contribute to quality improvement in dementia care and support. Methods: This paper describes how the Registry was set up in four stages, reflecting the four FAIR principles: the selection of data sources (Findability); obtaining access to the selected data sources (Accessibility); data linkage (Interoperability); and the reuse of data (Reusability). Results: The linkage of 16 different data sources, including national routine health and administrative data appeared to be technically and legally feasible. The linked data in the Registry offers rich information about (the use of) care for persons with dementia across various healthcare settings, including but not limited to primary care, secondary care, long-term care and medication use, that cannot be obtained from single data sources. Conclusions: A key lesson learned is that in order to reuse the data for quality improvement in practice, it is essential to involve healthcare professionals in setting up the Registry and to guide them in the interpretation of the data. [ABSTRACT FROM AUTHOR]

Published
2024
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28. How physicians see nurses’ role in decision-making about life-prolonging treatments in patients with a short life expectancy:An interview study

Author

Arends, Susanne A. M., Thodé, Maureen, Pasman, H. Roeline W., Francke, Anneke L., and Jongerden, Irene P.

Abstract

Objective: Exploring physicians’ views on hospital nurses’ role in decision-making about potentially life-prolonging treatments in patients with a short life expectancy. Methods: A qualitative study using semi-structured interviews with hospital physicians. Data were collected from May to September 2019 and analyzed following principles of thematic analysis. Results: Fifteen physicians working in different hospitals and specialisms participated. Physicians stated that they are responsible for the final decision about potentially life-prolonging treatments. They considered nurses’ role in decision-making to be complementary to the roles of both patients and the physicians themselves, especially when there are doubts or complex situations. Physicians varied in how important they found nurses’ involvement in the decision-making process: some physicians saw the involvement of nurses as “situation-dependent”, while others viewed nurses’ involvement as standard practice. Furthermore, physicians mentioned practical obstacles to involving nurses, like the limited time available to both nurses and physicians themselves. Conclusion: Physicians recognize a complementary role for nurses in decision-making about potentially life-prolonging treatment, especially in cases with doubts or complex situations. Practice implications: Physicians and nurses should engage with each other to make nurses’ involvement less situation-dependent. This inter-professional collaboration regarding decision-making about life-prolonging treatments should be stimulated, supported and maintained.

Published
2023

42. Supplemental Material -What Facilitates or Hampers Living at Home With Advanced Dementia Until the End of Life? A Qualitative Study Using Retrospective Interviews Among Family Caregivers, General Practitioners, and Case Managers

Author

de Jong, Loes M., Francke, Anneke L., Donker, Gé, van den Buuse, Susanne, and van der Heide, Iris

Subjects
FOS: Clinical medicine, 111799 Public Health and Health Services not elsewhere classified, FOS: Health sciences, 110306 Endocrinology, 110308 Geriatrics and Gerontology
Abstract

Supplemental Material for What Facilitates or Hampers Living at Home With Advanced Dementia Until the End of Life? A Qualitative Study Using Retrospective Interviews Among Family Caregivers, General Practitioners, and Case Managers by Loes M. de Jong, Anneke L. Francke, Gé Donker, Susanne van den Buuse, and Iris van der Heide in Journal of Applied Gerontology

Published
2023
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47. Physical and Psychological Distress Are Related to Dying Peacefully in Residents With Dementia in Long-Term Care Facilities

Author

Van den Block, Lieve, De Groote, Zeger, Brearley, Sarah, Caraceni, Augusto, Cohen, Joachim, Francke, Anneke, Harding, Richard, Higginson, Irene J., Kaasa, Stein, Linden, Karen, Miccinesi, Guido, Onwuteaka-Philipsen, Bregje, Pardon, Koen, Pasman, Roeline, Pautex, Sophie, Payne, Sheila, LucDeliens, De Roo, Maaike L., Albers, Gwenda, Deliens, Luc, de Vet, Henrica C.W., Francke, Anneke L., and Van Den Noortgate, Nele

Published
2015
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48. Evaluating the feasibility, experiences, facilitators of and barriers to carers and volunteers delivering Namaste Care to people with dementia in their own home: a qualitative interview study in the UK and the Netherlands

Author

Haaksma, Miriam L, primary, O'Driscoll, Colette, additional, Joling, Karlijn J, additional, Achterberg, Wilco P, additional, Francke, Anneke L, additional, van der Steen, Jenny T, additional, and Smaling, Hanneke J A, additional

Published
2022
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