Editorial : students with disabilities in higher education

This editorial will at first present the thirteen different articles published in the issue. On a second level, we will focus on “overarching themes”. Those themes should be understood as links between the different articles in this volume

Fatigue in facioscapulohumeral muscular dystrophy: a qualitative study of people’s experiences

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 (as measured with the checklist individual strength (CIS) fatigue questionnaire), was conducted to gain insight into the experiences of patients with fatigue. Data were inductively analyzed. Results: Patients describe fatigue as an overwhelming and unpredictable experience and they make a distinction between actual experienced fatigue and fear of becoming tired. Fatigue can, according to patients, be the result of weak muscles, physical overachieving or underachieving and stress. But most of the time patients do not know the actual causes of the fatigue, which makes it hard to deal with. The experienced fatigue has a large impact on participation, social contacts, and the quality of life of patients, and patients try to use many strategies to adapt themselves to the constantly changing situations. Conclusions: Fatigue is a severe problem in FSHD and has a huge impact on patients’ lives. Patients should be helped to reduce fatigue, for instance by offering evidence-based therapies such as aerobic exercise training or cognitive behavioral therapy.Implications for Rehabilitation Fatigue has significant influence on the quality of lives and participation of people with FSHD. Patients with FSHD are insufficient supported in coping with their fatigue. More attention for fatigue in patients with FSHD in rehabilitation is needed, for instance by a broader implementation of aerobic exercise training or cognitive behavioral therapy

Disclosing the undisclosed? Perceptions of Dutch higher education students on disclosing their disabilities

Research has shown that students with disabilities who do use accommodations are more successful in terms of final degree classification compared to those who do not. However, in Dutch universities, access to accommodations must be requested at different levels, meaning that disclosure of ones' disability is inevitable. The official numbers of Dutch students with disabilities registered differ greatly from self-stated numbers (9.4% vs 30%) (Steenkamp, 2015; Van den Broek et al., 2013). This implies that not all students disclose their disabilities at university. Little is known about how and why students choose (not) to disclose their disabilities. This paper describes the results of a qualitative cross-disability study regarding the disclosure strategies of students in higher education by reporting how Dutch university students deal with the disclosure of their disabilities to the university, teachers, and fellow students

Process evaluation of workplace health promotion in a sheltered workplace: a care ethics perspective

Despite the potential health benefits of workplace health promotion for employees in sheltered workplaces, participation is often limited. The aim of this study was (i) to understand this limited participation, and (ii) to find opportunities for adapting workplace health promotion, such that it better meets the needs of the target population. A responsive process evaluation of an extensive multi-component workplace health promotion program targeting lifestyle behaviors, financial behaviors, literacy and citizenship, was performed in a large, sheltered workplace in the Netherlands (>3500 employees). To understand the limited participation, interviews with employees (n = 8), supervisors (n = 7) and managers (n = 2), and 10 participant observations were performed. To find opportunities for improving workplace health promotion in the sheltered workplace, 7 dialogs with employees were performed (n = 30). The interview data on the barriers for participation were evaluated through the lens of care ethics, as this allowed to understand the role of various stakeholders in the limited participation, as well as the indirect role of the institutional context. Findings showed that participation in workplace health promotion could increase if it is organized in a way that it encourages employees to work on health together, allow to tailor activities to different needs and capabilities of employees, and connects activities to employees' daily lives. A strength of this study is that the responsive process evaluation focused both on barriers for participation, as well as on opportunities to increase participation

Need and value of case management in multidisciplinary ALS care: A qualitative study on the perspectives of patients, spousal caregivers and professionals

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 professionals (n = 10), and held a focus group (n = 20). We transcribed the audio-taped interviews and analysed all data thematically. Participants indicated that in certain circumstances case management can have an added value. They identified factors for receptiveness to case management: adequacy of usual care, rate of disease progression, and degree of social network support and personal factors of patients and spousal caregivers. Participants valued the time for consultation, house calls and proactive approach of the case manager. Patients with ALS and caregivers appreciated emotional support, whereas professionals did not mention the importance of emotional support by the case manager. In conclusion, ALS teams can consider implementation of valued aspects of case management (accessibility, ample time, proactive approach, emotional support) in the usual multidisciplinary ALS care. Additional support might be provided to patients with rapidly progressive disease course, passive coping style and small social networ

Strategies for disseminating recommendations or guidelines to patients: a systematic review

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 patients and/or reaching patients, were included. A hand search and a search in the grey literature, also done in February 2016, were added. Searches were not restricted by language or publication type. Publications that referred to (1) guideline(s) or recommendation(s), (2) dissemination, (3) dissemination with patients/patient organisations and (4) dissemination to patients/patient organisations were included in this article. Criteria 1 AND 2 were mandatory together with criteria 3 OR 4. RESULTS: The initial search revealed 3753 unique publications. Forty-seven articles met the inclusion criteria and were selected for detailed review. The hand search and grey literature resulted in four relevant articles. After reading the full text of the 47 articles, 21 were relevant for answering our research question. Most publications had low levels of evidence, 3 or 4 of the Oxford levels of evidence. One article had a level of evidence of 2(b). This article gives an overview of tools and strategies to disseminate recommendations to patients. Key factors of success were a dissemination plan, written at the start of the recommendation development process, involvement of patients in this development process and the use of a combination of traditional and innovative dissemination tools. The lack of strong evidence calls for more research of the effectiveness of different dissemination strategies as well as the barriers for implementing a strategic approach of dissemination. CONCLUSION: Our findings provide the first systematic overview of tools and strategies to disseminate recommendations to patients and patient organisations. Participation of patients in the whole process is one of the most important findings. These findings are relevant to develop, implement and evaluate more (effective) dissemination strategies which can improve health care. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s13012-016-0447-x) contains supplementary material, which is available to authorized users

Long-term follow-up after bilateral percutaneous epiphysiodesis around the knee to reduce excessive predicted final height

Context Percutaneous epiphysiodesis (PE) around the knee to reduce predicted excessive final height. Studies until now included small numbers of patients and short follow-up periods. Objective and design This Dutch multicentre, longterm, retrospective, follow-up study aimed to assess adult height (AH), complications, knee function and patient satisfaction after PE. The primary hypothesis was that PE around the knee in constitutionally tall boys and girls is an effective treatment for reducing final height with low complication rates and a high level of patient satisfaction. Participants 77 treated adolescents and 60 comparisons. Intervention Percutaneous epiphysiodesis. Outcome AH, complications, knee function, satisfaction. Results In the PE-treated group, final height was 7.0 cm (+/- 6.3 cm) lower than predicted in boys and 5.9 cm (+/- 3.7 cm) lower than predicted in girls. Short-term complications in file search were seen in 5.1% (three infections, one temporary nerve injury), one requiring reoperation. Long-term complications in file search were seen in 2.6% (axis deformity 1.3%, prominent head of fibula 1.3%). No significant difference in knee function was found between treated cases and comparisons. Satisfaction was high in both the comparison and PE groups; most patients in the PE group recommended PE as the treatment for close relatives with tall stature. Conclusion PE is safe and effective in children with predicted excessive AH. There was no difference in patient satisfaction between the PE and comparison group. Careful and detailed counselling is needed before embarking on treatment