A5077200183- Adolescent and Pediatric Healthcare
- Childhood Cancer Survivors' Quality of Life
- Family Support in Illness
- Diabetes Management and Education
- Family and Disability Support Research
- Chronic Disease Management Strategies
- Palliative Care and End-of-Life Issues
- Family and Patient Care in Intensive Care Units
- Interprofessional Education and Collaboration
- Child and Adolescent Health
- Health Policy Implementation Science
- Healthcare Policy and Management
- Heart Failure Treatment and Management
- Dutch Social and Cultural Studies
- Q Methodology Applications
- Cancer survivorship and care
- Primary Care and Health Outcomes
- Renal Transplantation Outcomes and Treatments
- Geriatric Care and Nursing Homes
- HIV/AIDS Research and Interventions
- Mental Health and Patient Involvement
- Evaluation and Performance Assessment
- Nursing care and research
- Family Caregiving in Mental Illness
- Clinical practice guidelines implementation
Rotterdam University of Applied Sciences
2016-2025
Art Innovation (Netherlands)
2025
Erasmus University Rotterdam
2011-2021
Erasmus MC Cancer Institute
2018-2021
Netherlands Organisation for Health Research and Development
2021
Netherlands Institute for Health Services Research
2020
University of Applied Sciences Utrecht
2018
Ghent University
2018
NHL University of Applied Sciences
2018
Utrecht University
2018
Abstract Background Discrepancy between self-reports and parent-proxy reports of adolescent health-related quality life (HRQoL) has been repeatedly acknowledged in the literature as proxy problem. However, little is known about extent direction this discrepancy. The purpose study to explore what HRQoL adolescents with chronic conditions those their parents differ. Methods A cross-sectional survey was conducted among suffering from parents. Socio-demographic disease-related characteristics...
1. De Labrusse C, Ramelet A, Maclennan SJ. Patient-centered care in maternity services: A critical appraisal and synthesis of the literature. Women’s Health Issues 2016; 26(1): 100-109. doi:10.1016/j.whi.2015.09.003 CrossRef Google Scholar
This study investigated self-management challenges and support needs experienced by kidney transplant recipients.After transplantation, recipients are expected to take an active role in self-management. However, evidence suggests that nurses experience difficulties operationalizing support. Greater insight into the recipients' perspective could help improve adequacy efficacy of nurse-led support.A cross-sectional qualitative study.Focus groups individual interviews were carried out with...
Abstract Background Adolescents with chronic conditions are major users of paediatric hospitals, but seldom participate in the evaluation services or research. Little is known about usefulness participatory approach adolescent health Objective To evaluate feasibility, benefits and limitations a research (PR) project involving chronically ill adolescents as co‐researchers. Design, setting participants Nine adolescents, aged 15–17 years, acted co‐researchers hospital‐based PR project. They...
Abstract Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents' experiences the transfer from pediatric adult medical care. A convenience sample 131 Dutch parents young people PIMD (16–26 years) completed a web-based questionnaire. Twenty-two percent persons were still in care; 22% others had no care coordinator, although their health needs same. Parents valued provided by pediatrician, wished see it...
Successful transfer of adolescent IBD patients to an adult gastroenterologist requires anticipation a changing role for and their parents. Self-efficacy has been demonstrated be important readiness. We therefore developed IBD-specific questionnaire (the "IBD-yourself") assess self-efficacy in visiting transition clinic. Our aim was evaluate the reliability this questionnaire, describe level patients, perceived according parents.In cross-sectional design, 50 (aged 14-18 years) 40 parents...
Abstract Aims To unravel outpatient nurses' views on the role of people with chronic conditions in self‐management, own support and to establish how these relate nurse‐led self‐management interventions. Background Providing is a core task nurses care. However, concept interpreted different ways little known about patients' role. Design Qualitative design. Methods Individual semi‐structured interviews were held 2012–2013 at university medical hospital Netherlands. After transcription,...
Empowerment in patients can lead to a higher participation care and self-management skills. However, there are limited number of high-quality instruments assess empowerment its various dimensions young persons. The aim was develop the psychometric properties Gothenburg Young Persons Scale (GYPES).The GYPES is 15-item questionnaire designed measure patient persons with chronic conditions. Three studies were conducted evaluate scale. Studies I II assessed face, content factorial validity, as...
Young adulthood is a challenging period for people with diabetes mellitus type 1 (T1DM) as they are facing multiple life transitions while managing demanding disease. This poses risk impaired health-related quality of (HRQOL). We assessed HRQOL in cohort young adults T1DM the Netherlands, and compared outcomes those Dutch norm groups healthy chronic disease.We analyzed data collected larger evaluation study on transitional care nationwide sample including twelve participating hospitals....
Methods: This research was a sequential mixed methods study in adolescents aged 12–19 years with various chronic conditions treated university children's hospital. Methods comprised 31 face-to-face interviews at home, hospital-based peer project which nine interviewed 34 fellow patients, and web-based questionnaire (n = 990). Emerging qualitative themes were transformed into items. Results: Having "a feeling of trust" "voice choice" the hospital central to these adolescents. Regarding...
The Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD) develop self-management skills. Fellow patients already treated in adult care (hereafter referred as 'buddies') organise the day-to-day program, run camp, counsel attendees, and also participate activities. attendees are who still have transfer care. This study aimed explore effects of this specific form peer-to-peer support on (16–25 years) ESRD participated (CC) 'participants'). A mixed methods...
Neurofibromatosis type 1 (NF1) is a neurocutaneous disorder associated with lifelong tumor growth propensity and neurocognitive impairments. Although follow‐up of adults NF1 often focuses on growth, cognitive or social problems other NF1‐related comorbidity not part standardized care. In order to provide optimal care services for these patients, we explored the needs NF1. A qualitative study was performed using semi‐structured group interviews, exploring worries in medical, psychological,...