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.

People who cannot participate in work without adaptations, for example, due to disability, can work in sheltered workplaces. These employees face various health risks, which are prompted by, for example, low income or low (health) literacy. More and more sheltered workplaces provide health promotion programs to improve health of their employees, such as educational workshops about physical exercise and healthy nutrition. However, participation of employees in such programs is limited. In this study, we investigated why participation is limited, and what are possible ways to make workplace health promotion programs that aim to improve health more attractive to employees in a sheltered workplace. We used different methods, such as interviews, group dialogs and participant observations. We concluded that workplace health promotion programs seem to rely too much on the individual employee, who prefers to work on health together with peers. Employees also value that activities in the health program are useful for their daily lives. This increases the relevance of the program for them and makes employees more inclined to participate.

Experiences and perspectives of patients with post-polio syndrome and therapists with exercise and cognitive behavioural therapy.

BACKGROUND: Many persons affected with poliomyelitis develop post-polio syndrome (PPS) later in their life. Recently, the effectiveness of Exercise Therapy (ET) and Cognitive Behavioural Therapy (CBT) for PPS has been evaluated in a randomized controlled trial, but did not show a decrease in fatigue or improvement in secondary endpoints like Quality of Life and self-perceived activity limitations. The aim of this explorative study was to gain insight in the perceived effects and experiences of the interventions from the perspectives of the patients and therapists. METHODS: Qualitative data were collected through semi-structured interviews with 17 patients and 7 therapists. All participants were involved in the trial. A thematic analysis of the data was performed. RESULTS: Some patients experienced a short term enhanced endurance and a better use of energy during the day. However, in general patients did not experience a long lasting reduction of fatigue from the CBT or ET. Mainly patients of the CBT, but also some patients of the ET described an increase of self-esteem and self-acceptance. As a result, patients were sometimes better able to perform physical activities during the day. In contrast to the CBT, the ET was in general perceived by the patients as an intensive therapy, which was difficult to fit into their daily routine. Therapists of both the CBT and the ET struggled with a low intrinsic motivation of the patients in the study. This made it sometimes difficult for the therapists to follow the protocol. CONCLUSION: Confirming the negative quantitative study outcome, the qualitative results did not demonstrate lasting effects on fatigue. Patients did, however, experience some benefits on self-esteem and acceptance of the disease. This study showed that it is of great importance to work with feasible interventions; they should fit the patients' needs on a practical (fit into their daily routine) and mental (fit their need for support) level.

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.

It's not just physical: a qualitative study regarding the illness experiences of people with facioscapulohumeral muscular dystrophy.

PURPOSE: Little is known about the illness experiences of people with Facioscapulohumeral Muscular Dystrophy (FSHD). The aim of this study was to provide insight into the illness experiences of people with FSHD in order to tailor rehabilitation programs to individual needs and expectations. METHODS: Twenty-five semi-structured interviews were conducted with people with FSHD. The interviews were audiotaped, transcribed and member checked. Computerized (MAXqda) and manual techniques were used for thematic data analysis. RESULTS: Intra- as well as extra-individual aspects play a role in the illness experiences of people with FSHD. Integrating the consequences of the diagnosis and symptoms, coping with heredity and progenity, adjusting to a decreasing independence, and the accompanying changing relationship with one's partner, are mentioned as intra-individual aspects. As extra-individual factors are the responses of the social environment, which was mentioned as well as used assistive devices, and maintaining or giving up work. CONCLUSIONS: Better understanding of the individual illness experiences, cognitions, and social context of people with FSHD can give health professionals tools to improve their care and give researchers direction for future studies to evaluate healthcare improvements from a holistic, patient-centred perspective. Implications for Rehabilitation FSHD has a major impact on people's lives. Besides the physical consequences, issues such as heredity, progenity, changing (intimate) relationships, social interactions and work should be addressed by rehabilitation professionals. Dependent on the timing of the diagnosis (early or later in life) people with FSHD could, in addition to medical consultation and physical therapy, profit from support by a social worker, occupational therapist and/or genetic Counselor for the above-mentioned themes to be addressed more extensively. It is relevant for rehabilitation professionals to become familiar with the personal characteristics and social circumstances of the patient before communicating the diagnosis and prognosis in order to individually tailor the content of the communication.

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 network.