Experiences of Ambulatory Patients With Huntington's Disease With Case Management: A Qualitative Study.

Autor: Kruijthof C; Cindy Kruijthof, MSW, is a registered nurse and an experienced case manager for people with Huntington's disease for 7 years. In 2022, she obtained her Master's degree in Social Work. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.; Marike E. de Boer, PhD, is a research associate with a background in the Human Movement Sciences and extensive experience in the field of qualitative research. In 2011, she successfully finished her PhD thesis titled: 'Advance Directives in Dementia Care. Perspectives of People With Alzheimer's Disease, Elderly Care Physicians and Relatives.' She is affiliated with the Department of Medicine for Older People, Amsterdam Public Health Research Institute, Location VUmc, Amsterdam University Medical Center, Amsterdam, The Netherlands.; Anouk M. van Loon, PhD, is besides a cognitive neuroscientist, an assistant professor, and a highly experienced researcher and data analyst. In 2014, she successfully finished her PhD in the field of consciousness and visual perception. She is affiliated with the Department of Medicine for Older People, Amsterdam Public Health Research Institute, Amsterdam University Medical Center, Location VUmc, Amsterdam, The Netherlands.; Jonieke Bredewold, BN, is a highly experienced registered nurse for people with Huntington's disease. In 2021, she completed her Bachelor of Nursing. Since 2022, she works as a case manager for people with Huntington's disease. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.; Loes van Dusseldorp, MSc, is a nurse scientist and research coordinator with extensive experience in the field of qualitative research. She also conducted research at the Radboud University Medical Centre, Nijmegen, the Netherlands, in the field of patient safety in long-term care, and the meaning of patients regarding their nurse practitioner. These studies led to several (inter)national publications. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands., de Boer ME; Cindy Kruijthof, MSW, is a registered nurse and an experienced case manager for people with Huntington's disease for 7 years. In 2022, she obtained her Master's degree in Social Work. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.; Marike E. de Boer, PhD, is a research associate with a background in the Human Movement Sciences and extensive experience in the field of qualitative research. In 2011, she successfully finished her PhD thesis titled: 'Advance Directives in Dementia Care. Perspectives of People With Alzheimer's Disease, Elderly Care Physicians and Relatives.' She is affiliated with the Department of Medicine for Older People, Amsterdam Public Health Research Institute, Location VUmc, Amsterdam University Medical Center, Amsterdam, The Netherlands.; Anouk M. van Loon, PhD, is besides a cognitive neuroscientist, an assistant professor, and a highly experienced researcher and data analyst. In 2014, she successfully finished her PhD in the field of consciousness and visual perception. She is affiliated with the Department of Medicine for Older People, Amsterdam Public Health Research Institute, Amsterdam University Medical Center, Location VUmc, Amsterdam, The Netherlands.; Jonieke Bredewold, BN, is a highly experienced registered nurse for people with Huntington's disease. In 2021, she completed her Bachelor of Nursing. Since 2022, she works as a case manager for people with Huntington's disease. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.; Loes van Dusseldorp, MSc, is a nurse scientist and research coordinator with extensive experience in the field of qualitative research. She also conducted research at the Radboud University Medical Centre, Nijmegen, the Netherlands, in the field of patient safety in long-term care, and the meaning of patients regarding their nurse practitioner. These studies led to several (inter)national publications. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands., van Loon AM; Cindy Kruijthof, MSW, is a registered nurse and an experienced case manager for people with Huntington's disease for 7 years. In 2022, she obtained her Master's degree in Social Work. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.; Marike E. de Boer, PhD, is a research associate with a background in the Human Movement Sciences and extensive experience in the field of qualitative research. In 2011, she successfully finished her PhD thesis titled: 'Advance Directives in Dementia Care. Perspectives of People With Alzheimer's Disease, Elderly Care Physicians and Relatives.' She is affiliated with the Department of Medicine for Older People, Amsterdam Public Health Research Institute, Location VUmc, Amsterdam University Medical Center, Amsterdam, The Netherlands.; Anouk M. van Loon, PhD, is besides a cognitive neuroscientist, an assistant professor, and a highly experienced researcher and data analyst. In 2014, she successfully finished her PhD in the field of consciousness and visual perception. She is affiliated with the Department of Medicine for Older People, Amsterdam Public Health Research Institute, Amsterdam University Medical Center, Location VUmc, Amsterdam, The Netherlands.; Jonieke Bredewold, BN, is a highly experienced registered nurse for people with Huntington's disease. In 2021, she completed her Bachelor of Nursing. Since 2022, she works as a case manager for people with Huntington's disease. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.; Loes van Dusseldorp, MSc, is a nurse scientist and research coordinator with extensive experience in the field of qualitative research. She also conducted research at the Radboud University Medical Centre, Nijmegen, the Netherlands, in the field of patient safety in long-term care, and the meaning of patients regarding their nurse practitioner. These studies led to several (inter)national publications. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands., Bredewold J; Cindy Kruijthof, MSW, is a registered nurse and an experienced case manager for people with Huntington's disease for 7 years. In 2022, she obtained her Master's degree in Social Work. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.; Marike E. de Boer, PhD, is a research associate with a background in the Human Movement Sciences and extensive experience in the field of qualitative research. In 2011, she successfully finished her PhD thesis titled: 'Advance Directives in Dementia Care. Perspectives of People With Alzheimer's Disease, Elderly Care Physicians and Relatives.' She is affiliated with the Department of Medicine for Older People, Amsterdam Public Health Research Institute, Location VUmc, Amsterdam University Medical Center, Amsterdam, The Netherlands.; Anouk M. van Loon, PhD, is besides a cognitive neuroscientist, an assistant professor, and a highly experienced researcher and data analyst. In 2014, she successfully finished her PhD in the field of consciousness and visual perception. She is affiliated with the Department of Medicine for Older People, Amsterdam Public Health Research Institute, Amsterdam University Medical Center, Location VUmc, Amsterdam, The Netherlands.; Jonieke Bredewold, BN, is a highly experienced registered nurse for people with Huntington's disease. In 2021, she completed her Bachelor of Nursing. Since 2022, she works as a case manager for people with Huntington's disease. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.; Loes van Dusseldorp, MSc, is a nurse scientist and research coordinator with extensive experience in the field of qualitative research. She also conducted research at the Radboud University Medical Centre, Nijmegen, the Netherlands, in the field of patient safety in long-term care, and the meaning of patients regarding their nurse practitioner. These studies led to several (inter)national publications. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands., van Dusseldorp L; Cindy Kruijthof, MSW, is a registered nurse and an experienced case manager for people with Huntington's disease for 7 years. In 2022, she obtained her Master's degree in Social Work. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.; Marike E. de Boer, PhD, is a research associate with a background in the Human Movement Sciences and extensive experience in the field of qualitative research. In 2011, she successfully finished her PhD thesis titled: 'Advance Directives in Dementia Care. Perspectives of People With Alzheimer's Disease, Elderly Care Physicians and Relatives.' She is affiliated with the Department of Medicine for Older People, Amsterdam Public Health Research Institute, Location VUmc, Amsterdam University Medical Center, Amsterdam, The Netherlands.; Anouk M. van Loon, PhD, is besides a cognitive neuroscientist, an assistant professor, and a highly experienced researcher and data analyst. In 2014, she successfully finished her PhD in the field of consciousness and visual perception. She is affiliated with the Department of Medicine for Older People, Amsterdam Public Health Research Institute, Amsterdam University Medical Center, Location VUmc, Amsterdam, The Netherlands.; Jonieke Bredewold, BN, is a highly experienced registered nurse for people with Huntington's disease. In 2021, she completed her Bachelor of Nursing. Since 2022, she works as a case manager for people with Huntington's disease. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.; Loes van Dusseldorp, MSc, is a nurse scientist and research coordinator with extensive experience in the field of qualitative research. She also conducted research at the Radboud University Medical Centre, Nijmegen, the Netherlands, in the field of patient safety in long-term care, and the meaning of patients regarding their nurse practitioner. These studies led to several (inter)national publications. She is affiliated with Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands.

Publikováno v: Professional case management [Prof Case Manag] 2024 Jan-Feb 01; Vol. 29 (1), pp. 13-21.