Browsing by Author "Cup, E.H.C."

Now showing items 1-4 of 4

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 of patients with facioscapulohumeral dystrophy with facial weakness: a qualitative study
Sezer, S ; Cup, E.H.C. ; Roets-Merken, LM ; Lanser, A ; Siemann, I ; Weikamp, JG ; Mul, K ; Engelen, BG van ; Satink, T. ; Voermans, NC
2021, Article / Letter to editor (Disability and Rehabilitation, (2021))Purpose This study focuses on the functional and psychosocial consequences of facial weakness of patients with facioscapulohumeral muscular dystrophy (FSHD) and how they manage their daily lives. Materials and methods We conducted a qualitative study. Sixteen FSHD patients with varying degrees of facial weakness were interviewed using a semi-structured interview guide. Data were analyzed using the constant comparison approach based on the Straussian Grounded Theory. Results Reduced facial expression affected different aspects of a participant's life, which is reinforced by fatigue. Particularly the younger participants described the confrontation with reduced facial expression as upsetting. The unpredictability of the progression of facial weakness makes many participants insecure and concerned. They generally tend to avoid discussing facial weakness with loved ones as well as with strangers. Conclusions Patients would like the expert teams to shed more light on effective skill training and psychosocial support, especially for the younger patient group. A multidisciplinary approach is needed in addition to programs focusing on the individual aspects of facial weakness. As the experienced psychosocial effect is not commonly equal to the objective degree of facial weakness, we recommend a tailored approach. Finally, these programs should point out the importance of the patient's own ingenuity.
NON-PHARMACOLOGICAL CARE IN SYSTEMIC SCLEROSIS: OPENING THE BLACK BOX
Stöcker, J.K. ; Cup, E.H.C. ; Vonk, M ; Hoogen, F van den ; Nijhuis-van der Sanden, M.W.G. ; Staal, J.B. ; Ende, C. van den
2018, Article / Letter to editor (Annals of the Rheumatic Diseases, vol. 78, (2018), pp. 112)
What moves the rheumatologist? Unravelling decision making in the referral of systemic sclerosis patients to health professionals: a qualitative study
Stöcker, J.K. ; Cup, E.H.C. ; Vonk, M.C. ; Hoogen, F.H.C. van den ; Nijhuis-van der Sanden, M.W.G. ; Staal, J.B. ; Ende, C.H.M.
2018, Article / Letter to editor (Rheumatology, vol. 2, iss. 2, (2018))

Now showing items 1-4 of 4

Browsing by Author "Cup, E.H.C."

Browse

All of HAN Publications