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BACKGROUND The value of incorporating patients' perspectives in health care is being acknowledged more and more because such incorporation may improve quality of health care. However, research priorities are mostly driven by professionals. In this study, renal patients were engaged to list priorities for social scientific research in order to complement the(More)
In ethical theory, different concepts of autonomy can be distinguished. In this article we explore how these concepts of autonomy are combined in theory in the citizenship paradigm, and how this turns out in the practice of care for people with acquired brain injury. The stories of a professional caregiver and a client with acquired brain injury show that(More)
PURPOSE The aim of this article is to describe how fatigue affects the lives of people with facioscapulohumeral dystrophy (FSHD), how they experience fatigue, and how they deal with it in order to attune rehabilitation care to patients' needs. METHOD A qualitative study, consisting of 25 semistructured interviews with patients with FSHD and severe fatigue(More)
BACKGROUND   Different strategies by which patients can be involved in research include consultation, control and collaboration. This article focuses on collaboration within research teams and considers this with reference to a research project about setting a social-scientific agenda for health research from the perspectives of patients with a chronic(More)
BACKGROUND Limited data exist on the impact of living kidney donation on the donor-recipient relationship. Purpose of this study was to explore motivations to donate or accept a (living donor) kidney, whether expected relationship changes influence decision making and whether relationship changes are actually experienced. METHODS We conducted 6 focus(More)
BACKGROUND The aim of this systematic literature review was to assess what dissemination strategies are feasible to inform and educate patients about recommendations (also known as guidelines). METHODS The search was performed in February 2016 in PubMed, Ebsco/PsycINFO, Ebsco/CINAHL and Embase. Studies evaluating dissemination strategies, involving(More)
OBJECTIVES This qualitative study investigated the renal patients' experience of positive and negative consequences of transplantation, as well as the strategies they use to adapt to the transplantation. DESIGN AND METHODS A qualitative design (30 participants in total), using individual interviews (18 participants) and two focus groups (12 participants(More)
PURPOSE To describe a study in which patients with Parkinson's disease (PD) were engaged to list priorities for research to complement the professionals' research agenda. METHOD The study was conducted by researchers and people with PD or relatives. Interviews and focus groups were held to develop a research agenda from patients' perspectives. A(More)
INTRODUCTION Participation is important in rehabilitation of people with acquired brain injury (ABI). Studies have shown that their participation is problematic. It is, however, unknown how they experience their participation and what influences their participation. This study aims to answer the question how people with ABI experience participation and(More)
Our objective was to explore the needs and value of case management according to patients with amyotrophic lateral sclerosis (ALS), their spousal caregivers, and health care professionals in the context of multidisciplinary ALS care. We undertook semi-structured interviews with 10 patients with ALS, their caregivers (n = 10) and their ALS health care(More)