Browsing by Author "Engelen, B.G.M. van"

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Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue
Veenhuizen, Y ; Satink, T. ; Graff, Maud ; Geurts, A.C.H. ; Groothuis, JT ; Engelen, B.G.M. van ; Nijhuis-van der Sanden, M.W.G. ; Cup, E.H.C.
2021, Article / Letter to editor (BMJ Open, vol. 11, iss. 8, (2021))Objective To obtain insight into experiences of patients with a neuromuscular disease and chronic fatigue and their healthcare professionals regarding content and delivery of a multidisciplinary outpatient self-management group programme to improve social participation. This will inform future implementation. Design A mixed method study alongside a randomised controlled trial. Setting University hospital, rehabilitation centre and community health centre. Participants 29 patients with a neuromuscular disease and chronic fatigue and 13 healthcare professionals participated in this mixed methods study. Intervention Multidisciplinary group programme, called Energetic, consisted of a 4 months intervention with weekly meetings and covered four modules: (1) individually tailored aerobic exercise training; (2) education about aerobic exercise; (3) self-management training in applying energy conservation strategies and (4) implementation and relapse prevention in daily life. Main measures Quantitative data were collected by a questionnaire measuring patients' (n=25, all completed the programme) satisfaction with the perceived results, content and delivery of the programme. Qualitative data were collected by individual and focus group interviews to gain insight in the experiences of patients (n=18), next of kin (n=2) and healthcare professionals (n=13) with facilitators and barriers to programme implementation. Results Patients were satisfied with the number and length of the sessions, the different modules and the therapists. Analysis of the interviews led to five themes: (1) the combination of modules makes a complete picture, (2) the programme is physically and mentally intensive, (3) the group setting is valuable, (4) small variations in delivery occur in different settings, (5) therapists are coaches. Suggestions for programme improvement include a combination of face to face and e-health, enhancement of therapists' skills in guiding group interventions and inclusion of more booster sessions to evaluate and maintain self-management competencies. Conclusions The Energetic programme could be implemented in different healthcare settings and group settings, and a combination of modules proved to be a facilitator for improving self-management.
Experiences with facial weakness in patients with facioscapulohumeral dystrophy: a qualitative study
Cup, Edith ; Sezer, S ; Lanser, A ; Mul, K ; Groothuis, JT ; Engelen, B.G.M. van ; Satink, T. ; Voermans, N
2019, Article / Letter to editor (Neuromuscular Disorders, vol. 29, (2019), pp. S52)
Implementation and process evaluation of the energetic study
Veenhuizen, Y ; Cup, Edith ; Satink, T. ; Groothuis, JT ; Engelen, B.G.M. van ; Nijhuis-van der Sanden, M.W.G. ; Guerts, A
2016, Article / Letter to editor (Neuromuscular Disorders, vol. 26, (2016), pp. S147-S148)
How Persons with a Neuromuscular Disease Perceive Employment Participation : A Qualitative Study
Minis, Marie-Antoinett van ; Satink, T. ; Kinébanian, Astrid ; Engels, J.A. ; Heerkens, Y.F. ; Engelen, B.G.M. van ; Nijhuis-van der Sanden, M.W.G.
2014, Article / Letter to editor (Journal of Occupational Rehabilitation, vol. 24, iss. 1, (2014), pp. 52-67)Introduction A qualitative study was carried out to understand how people with a slow progressive adult type neuromuscular disease (NMD) perceive employment participation. Methods 16 paid employed persons with NMD were interviewed in open, in-depth interviews. Data were analyzed using the constant comparison method. Results Four themes were identified in the analyses: (1) Experiences regarding the meaning of work; (2) Solving problems oneself; (3) Reaching a turning point; and (4) Taking into account environmental aspects. Persons with NMD highlighted benefits of staying at work as well as the tension they felt how to shape decisions to handle progressive physical hindrances in job retention. This study shows how participants at work with NMD were challenged to keep up appearances at work and at home, the tension felt around when and if to disclose, the effect of their condition on colleagues and work reorganization challenges. Participants experienced that disclosure did not always make things better. With increasing disability participants’ focus shifted from the importance of assistive products towards considerate colleague, in particular superior’s willingness in supporting job retention.
Exploring employment in consultation reports of patients with neuromuscular diseases
Minis, Marie-Antoinett van ; Cup, Edith ; Heerkens, Y.F. ; Engels, J.A. ; Engelen, B.G.M. van ; Oostendorp, Rob
2012, Article / Letter to editor (Archives of Physical Medicine and Rehabilitation, vol. 93, iss. 12, (2012), pp. 2276-2280)To explore consultation reports for patient and employment characteristics and recommendations on employment regarding patients with neuromuscular diseases (NMDs). Eighty percent of the included consultation reports contained information on employment. Less than half the patients with NMD were employed, most in office-related jobs, using some kind of adaptations. Nineteen of 20 patients who agreed to recommendations regarding therapy were adequately referred by occupational therapists and physical therapists for treatment of employment problems.
Living with myotonic dystrophy; what can be learned from couples? a qualitative study
Cup, Edith ; Kinebanian, A ; Satink, T. ; Pieterse, AJ ; Hendricks, HT ; Oostendorp, Rob ; Wilt, GJ van der ; Engelen, B.G.M. van
2011, Article / Letter to editor (BMC Neurology, vol. 11, (2011))Background: Myotonic dystrophy type 1 (MD1) is one of the most prevalent neuromuscular diseases, yet very little is known about how MD1 affects the lives of couples and how they themselves manage individually and together. To better match health care to their problems, concerns and needs, it is important to understand their perspective of living with this hereditary, systemic disease. Methods: A qualitative study was carried out with a purposive sample of five middle-aged couples, including three men and two women with MD1 and their partners. Fifteen in-depth interviews with persons with MD1, with their partners and with both of them as a couple took place in the homes of the couples in two cities and three villages in the Netherlands in 2009. Results: People with MD1 associate this progressive, neuromuscular condition with decreasing abilities, describing physical, cognitive and psychosocial barriers to everyday activities and social participation. Partners highlighted the increasing care giving burden, giving directions and using reminders to compensate for the lack of initiative and avoidant behaviour due to MD1. Couples portrayed the dilemmas and frustrations of renegotiating roles and responsibilities; stressing the importance of achieving a balance between individual and shared activities. All participants experienced a lack of understanding from relatives, friends, and society, including health care, leading to withdrawal and isolation. Health care was perceived as fragmentary, with specialists focusing on specific aspects of the disease rather than seeking to understand the implications of the systemic disorder on daily life. Conclusions: Learning from these couples has resulted in recommendations that challenge the tendency to treat MD1 as a condition with primarily physical impairments. It is vital to listen to couples, to elicit the impact of MD1, as a multisystem disorder that influences every aspect of their life together. Couple management, supporting the self-management skills of both partners is proposed as a way of reducing the mismatch between health services and health needs.
Employment status of patients with neuromuscular diseases in relation to personal factors, fatigue and health status : A secondary analysis
Minis, Marie-Antoinett van ; Kalkman, Joke ; Akkermans, Reinier ; Engels, J.A. ; Huijbregts, Peter ; Bleijenberg, Gijs ; Oostendorp, Rob ; Engelen, B.G.M. van
2010, Article / Letter to editor (Journal of Rehabilitation Medicine, vol. 42, iss. 1, (2010), pp. 60-65)To determine the number of employed people in a group of patients with neuromuscular diseases and in 3 separate subgroups (facioscapulo-humeral dystrophy, hereditary motor and sensory neuropathy, and myotonic dystrophy) to investigate any differences in employment status between the patient groups, and to identify factors related to employment status. A total of 591 patients with neuromuscular diseases participated in the study, 138 with facioscapulo-humeral dystrophy, 135 with hereditary motor and sensory neuropathy, and 318 with myotonic dystrophy. Self-report questionnaires, the Checklist Individual Strength (CIS) and the Short Form-36 (SF-36). Of the patients with neuromuscular diseases in the study, 56.7% were employed. Younger age, being male, and higher education contributed significantly to employment status of the neuromuscular diseases group and the hereditary motor and sensory neuropathy and myotonic dystrophy subgroups. Significant between-group differences for employed vs not employed subjects were present in the total neuromuscular diseases group on all subscales of the CIS and SF-36. Factors related to employment status differed for the 3 neuromuscular diseases subgroups. More than half of the patients with neuromuscular diseases were employed. Patients with facioscapulo-humeral dystrophy and patients with hereditary motor and sensory neuropathy were more often employed than patients with myotonic dystrophy. Between-group analyses for differences in baseline factors revealed 11 significant factors related to employment. Multivariate logistic analyses revealed 6 factors contributing to employment for the group of patients with neuromuscular diseases.

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