Browse by Lectorate "Neurorevalidatie"

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Zelfmanagement in de CVA-revalidatie : uitdagingen voor CVA-getroffenen, partners en professionals
Satink, T.
2016, Book (monograph) De doelstelling van het promotieonderzoek is om meer inzicht te krijgen in zelf- management na een beroerte. Hiervoor hebben wij onderzoek gedaan naar de ervaringen en meningen van diverse betrokkenen in de CVA-revalidatie, namelijk de CVA-getroffenen, de partners en professionals. In totaal zijn zes verschillende deelstudies uitgevoerd. In Nederland krijgen ieder jaar ongeveer 45.000 mensen een beroerte, ook wel CVA (Cerebro Vasculair Accident) genoemd. Veel mensen herstellen goed of hebben relatief weinig restverschijnselen. Sommige CVA-getroffenen ondervinden echter permanente beperkingen in dagelijkse activiteiten door sensomotorische, cognitieve en/of emotionele problemen. Daardoor kunnen zij vaak minder participeren in de maatschappij. Voor deze groep heeft een beroerte meestal ook gevolgen voor de partner of andere naasten. Zij krijgen vaak een aanvullende rol als mantelzorger, en deze nieuwe situatie leidt regelmatig tot emotionele en fysieke overbelasting. Zelfmanagement wordt gezien als een belangrijk concept in de CVA-revalidatie om CVA-getroffenen en hun directe naasten te ondersteunen in een betere zorg voor zichzelf en een betekenisvol leven na de beroerte. Hoe CVAgetroffenen, de partners, en professionals in de CVA-revalidatie in Nederland aankijken tegen zelfmanagement na een beroerte is echter nauwelijks bekend. In de literatuur zijn veel verschillende definities te vinden van zelfmanagement. Voor het proefschrift wordt de volgende definitie gebruikt: ‘zelfmanagement is de individuele mogelijkheid om, eventueel in samenwerking met familie, naasten en professionals, de symptomen, behandeling, fysieke, psychosociale, culturele en spirituele consequenties en bijbehorende aanpassingen in leefstijl te managen om te kunnen leven met een chronische aandoening’. Zelfmanagement wordt onderverdeeld in medisch management, rol-management en emotioneel management. Medisch management richt zich op het kunnen managen van de medische aspecten van een chronische ziekte, zoals medicijngebruik, het nemen van rust en gezonde voeding; sociaal of rol-management is het kunnen managen van de gevolgen van een (chronische) ziekte voor het dagelijks leven en richt zich op de betekenisgeving aan het leven en de diverse rollen; emotioneel management richt zich op het kunnen managen van de emotionele gevolgen en veranderingen als gevolg van een (chronische) ziekte zoals bijvoorbeeld onzekerheid en angst. Ondanks dat zelfmanagement principes in verschillende programma’s voor CVAgetroffenen worden toegepast, zijn de meningen en ervaringen van de CVA-getroffenen zélf en hun partners over zelfmanagement na een beroerte nauwelijks beschreven. Ook is weinig bekend over de mening van professionals in de CVA-revalidatie over zelfmanagement. Willen we effectieve zelfmanagement programma’s voor mensen met een beroerte ontwikkelen en implementeren, dan is het van belang en logisch om de opvattingen van CVAgetroffenen, hun partners en professionals in de CVA-revalidatie hierover te onderzoeken. De belangrijkste doelstelling van het proefschrift was daarom om inzicht te krijgen in het zelfmanagement van mensen na een beroerte: wat houdt CVA-getroffenen en hun partners bezig? Wat zijn hun ervaringen ten aanzien van zelfmanagement na een beroerte? Wat zijn hun wensen en behoeften? En hoe managen CVA-getroffenen en hun partners zichzelf na ontslag naar huis? Daarnaast wilden we ook weten hoe de verschillende professionals in de CVA-revalidatie aankijken tegen het concept zelfmanagement en op
What about self-management? Challenges for stroke survivors, spouses and professionals
Satink, T.
2016, Dissertation De doelstelling van het promotieonderzoek is om meer inzicht te krijgen in zelf- management na een beroerte. Hiervoor hebben wij onderzoek gedaan naar de ervaringen en meningen van diverse betrokkenen in de CVA-revalidatie, namelijk de CVA-getroffenen, de partners en professionals. In totaal zijn zes verschillende deelstudies uitgevoerd. In Nederland krijgen ieder jaar ongeveer 45.000 mensen een beroerte, ook wel CVA (Cerebro Vasculair Accident) genoemd. Veel mensen herstellen goed of hebben relatief weinig restverschijnselen. Sommige CVA-getroffenen ondervinden echter permanente beperkingen in dagelijkse activiteiten door sensomotorische, cognitieve en/of emotionele problemen. Daardoor kunnen zij vaak minder participeren in de maatschappij. Voor deze groep heeft een beroerte meestal ook gevolgen voor de partner of andere naasten. Zij krijgen vaak een aanvullende rol als mantelzorger, en deze nieuwe situatie leidt regelmatig tot emotionele en fysieke overbelasting. Zelfmanagement wordt gezien als een belangrijk concept in de CVA-revalidatie om CVA-getroffenen en hun directe naasten te ondersteunen in een betere zorg voor zichzelf en een betekenisvol leven na de beroerte. Hoe CVAgetroffenen, de partners, en professionals in de CVA-revalidatie in Nederland aankijken tegen zelfmanagement na een beroerte is echter nauwelijks bekend. In de literatuur zijn veel verschillende definities te vinden van zelfmanagement. Voor het proefschrift wordt de volgende definitie gebruikt: ‘zelfmanagement is de individuele mogelijkheid om, eventueel in samenwerking met familie, naasten en professionals, de symptomen, behandeling, fysieke, psychosociale, culturele en spirituele consequenties en bijbehorende aanpassingen in leefstijl te managen om te kunnen leven met een chronische aandoening’. Zelfmanagement wordt onderverdeeld in medisch management, rol-management en emotioneel management. Medisch management richt zich op het kunnen managen van de medische aspecten van een chronische ziekte, zoals medicijngebruik, het nemen van rust en gezonde voeding; sociaal of rol-management is het kunnen managen van de gevolgen van een (chronische) ziekte voor het dagelijks leven en richt zich op de betekenisgeving aan het leven en de diverse rollen; emotioneel management richt zich op het kunnen managen van de emotionele gevolgen en veranderingen als gevolg van een (chronische) ziekte zoals bijvoorbeeld onzekerheid en angst. Ondanks dat zelfmanagement principes in verschillende programma’s voor CVAgetroffenen worden toegepast, zijn de meningen en ervaringen van de CVA-getroffenen zélf en hun partners over zelfmanagement na een beroerte nauwelijks beschreven. Ook is weinig bekend over de mening van professionals in de CVA-revalidatie over zelfmanagement. Willen we effectieve zelfmanagement programma’s voor mensen met een beroerte ontwikkelen en implementeren, dan is het van belang en logisch om de opvattingen van CVAgetroffenen, hun partners en professionals in de CVA-revalidatie hierover te onderzoeken. De belangrijkste doelstelling van het proefschrift was daarom om inzicht te krijgen in het zelfmanagement van mensen na een beroerte: wat houdt CVA-getroffenen en hun partners bezig? Wat zijn hun ervaringen ten aanzien van zelfmanagement na een beroerte? Wat zijn hun wensen en behoeften? En hoe managen CVA-getroffenen en hun partners zichzelf na ontslag naar huis? Daarnaast wilden we ook weten hoe de verschillende professionals in de CVA-revalidatie aankijken tegen het concept zelfmanagement en op
Valued activities and informal caregiving in stroke: a scoping review.
Jellema, S. ; Wijnen, M.A.M. ; Steultjens, E.M.J. ; Nijhuis-van der Sanden, M.W.G. ; Sande, W.M.M. van der
2019, Article / Letter to editor (Disability and Rehabilitation, vol. 41, iss. 18, (2019), pp. 2223-2234)
Valued activities and informal caregiving in stroke: a scoping review
Jellema, S. ; Wijnen, M.A.M. ; Steultjens, E.M.J. ; Nijhuis-van der Sanden, M.W.G. ; Sande, W.M.M. van der
2018, Article / Letter to editor (Disability and Rehabilitation, vol. April 17, (2018), pp. 1-12)
Validity and reliability of serratus anterior hand held dynamometry
Ijspeert, J ; Kerstens, H.C.J.W. ; Janssen, R. ; Geurts, A.C.H. ; Alfen, N. van ; Groothuis, JT
2020, Article / Letter to editor (BMC Musculoskeletal Disorders, vol. 20, iss. 1, (2020))Background Strength testing of the serratus anterior muscle with hand held dynamometry (HDD) in supine subjects has low reproducibility, and is influenced by compensatory activity of other muscles like the pectoralis major and upper trapezius. Previously, two manual maximum voluntary isometric contraction tests of the serratus anterior muscle were reported that recruited optimal surface electromyography (sEMG) activity in a sitting position. We adapted three manual muscle tests to make them suitable for HHD and investigated their validity and reliability. Methods Twenty-one healthy adults were examined by two assessors in one supine and two seated positions. Each test was repeated twice. Construct validity was determined by evaluating force production (assessed with HHD) in relation to sEMG of the serratus anterior, upper trapezius and pectoralis major muscles, comparing the three test positions. Intra- and interrater reliability were determined by calculating intra-class correlation coefficients (ICC) smallest detectable change (SDC) and standard error of measurement (SEM). Results Serratus anterior muscle sEMG activity was most isolated in a seated position with the humerus in 90 degrees anteflexion in the scapular plane. This resulted in the lowest measured force levels in this position with a mean force of 296 N (SEM 15.8 N). Intrarater reliability yielded an ICC of 0.658 (95% CI 0.325; 0.846) and an interrater reliability of 0.277 (95% CI -0.089;0.605). SDC was 127 Newton, SEM 45.8 Newton. Conclusion The results indicate that validity for strength testing of the serratus anterior muscle is optimal with subjects in a seated position and the shoulder flexed at 90 degrees in the scapular plane. Intrarater reliability is moderate and interrater reliability of this procedure is poor. However the high SDC values make it difficult to use the measurement in repeated measurements.
Uitkomsten van de ‘Cognitive Orientation to daily Occupational Performance’ (CO-OP) voor kinderen met DCD: Multipele Casestudie – Kwalitatief deel
Lindenschot, M. ; Kottorp, A. ; Steultjens, E.M.J.
2013, Article / Letter to editor (Wetenschappelijk Tijdschrift voor Ergotherapie, vol. 6, iss. 2, (2013), pp. 26-36)
Uitkomsten van de ‘Cognitive Orientation to daily Occupational Performance’ (CO-OP) voor kinderen met DCD : Multipele Casestudie - Kwantitatief deel
Lindenschot, M. ; Kottorp, A. ; Steultjens, E.M.J.
2012, Article / Letter to editor (Wetenschappelijk Tijdschrift voor Ergotherapie, vol. 5, iss. 4, (2012), pp. 24-38)Volgens internationale schattingen is de prevalentie van de diagnose Developmental Coordination Disorder (DCD) minstens 6% voor kinderen in de leeftijd van 5 tot 11 jaar (1). De American Psychiatric Association (APA) heeft DCD gedefinieerd als “The essential feature of DCD is a marked impairment in the development of motor coordination (…) that significantly interferes with academic achievement or activities of daily living” (1). Vrij vertaald naar het Nederlands betekent dit: ‘een aantoonbare verstoring in de ontwikkeling van de motorische coördinatie (…) dat significant interfereert met de schoolse prestaties of met algemene dagelijkse activiteiten’. Vanwege het effect van DCD op het dagelijks leven van kinderen en hun familie (2) is het noodzakelijk dat we interventies toepassen met als doel het dagelijks leven te verbeteren (3).
Treating patients with severe mental illness with narrative exposure therapy for comorbid post-traumatic stress disorder.
Mauritz, MW ; Gaal, B.G.I. van ; Goossens, P. ; Jongedijk, RA ; Vermeulen, H.
2020, Article / Letter to editor (British Journal of Psychiatry Open, vol. 7(1), e12, (2020))
The perspectives of spouses of stroke survivors on self-management – a focus group study.
Satink, T. ; Cup, Edith ; Swart, B.J.M. de ; Nijhuis-van der Sanden, M.W.G.
2018, Article / Letter to editor (Disability and Rehabilitation, vol. 40, (2018), pp. 176-184)
The perspectives and values of children with a mitochondrial disorder with regard to everyday activities.
Lindenschot, M. ; Steultjens, E.M.J. ; Zajec, J. ; Nijhuis-van der Sanden, M.W.G. ; Koene, S. ; Groot, I. de
2018, Article / Letter to editor (Journal of Developmental and Physical Disabilities, (2018), pp. 1-26)
The evaluation of an e-supported Illness Management and Recovery program for patients with SMI
Beentjes, T.A.A. ; Gaal, B.G.I. van ; Goossens, P. ; Nijhuis-van der Sanden, M.W.G.
2016, Article / Letter to editor (Journal of Advanced Nursing, vol. 72, (2016), pp. 82-83)
Stumbling, struggling, and shame due to spasticity: a qualitative study of adult persons with hereditary spastic paraplegia.
Kerstens, H.C.J.W. ; Satink, T. ; Nijkrake, M.J. ; Swart, B.J.M. de ; Lith, B.J.H. van ; Geurts, A.C.H. ; Nijhuis-van der Sanden, M.W.G.
2019, Article / Letter to editor (Disability and Rehabilitation, vol. 13, (2019), pp. 1-8)
Stroke survivors' experiences of rehabilitation: A systematic review of qualitative studies
Peoples, H ; Satink, T. ; Steultjens, E.M.J.
2011, Article / Letter to editor (Scandinavian Journal of Occupational Therapy, vol. 18, iss. 3, (2011), pp. 163-171)Introduction: The aim was to obtain the best available knowledge on stroke survivors' experiences of rehabilitation. The increase in demands for accountability in health care and acknowledgement of the importance of client participation in health decisions calls for systematic ways of integrating this perspective. Methods and materials: A systematic review of qualitative studies was performed. A literature search in MEDLINE, CINAHL, PsycINFO, and EMBASE was conducted. Suitability for inclusion was based on selected criteria: published qualitative studies written in English from 1990 to 2008 on stroke survivors' experiences of rehabilitation in a clinical setting. Data analysis entailed extracting, editing, grouping, and abstracting findings. Results: Twelve studies were included. One theme, "Power and Empowerment" and six subcategories were identified: 1) Coping with a new situation, 2) Informational needs, 3) Physical and non-physical needs, 4) Being personally valued and treated with respect, 5) Collaboration with health care professionals and 6) Assuming responsibility and seizing control. Discussion: The synthesis showed that stroke survivors' experiences of rehabilitation reflected individual and relational aspects of power and empowerment. The capacity to assume power and empowerment was a dynamic rather than a progressive issue, and enabling empowerment was a matter of weighing contrasting issues against each other, e. g. the right to decide versus the right not to decide.
A Standardized Protocol for Maximum Repetition Rate Assessment in Children
Diepeveen, S.J.H. ; Haaften, L van ; Terband, H ; Swart, B.J.M. de ; Maassen, B
2019, Article / Letter to editor (Folia Phoniatrica et Logopaedica, vol. 71, iss. 5-6, (2019), pp. 238-250)
Social participation perspectives from persons with cognitive problems and their caregivers: a descriptive qualitative study
Donkers, H.W. ; Veen, D.J. van der ; Vernooij-Dassen, M. ; Nijhuis-van der Sanden, M.W.G. ; Graff, Maud
2018, Article / Letter to editor (Ageing and Society, vol. 39, iss. 7, (2018), pp. 1-27)
Social participation of people with cognitive problems and their caregivers: a feasibility evaluation of the Social Fitness Programme
Donkers, H.W. ; Veen, D.J. van der ; Vernooij-Dassen, M. ; Nijhuis-van der Sanden, M.W.G. ; Graff, Maud
2017, Article / Letter to editor (International Journal of Geriatric Psychiatry, vol. 32, iss. 12, (2017), pp. 50-63)
Setting meaningful goals in rehabilitation: rationale and practical tool.
Dekker, J.J.H. ; Groot, V. de ; Steeg, A.M. ter ; Vloothuis, J. ; Holla, J. ; Collette, E. ; Satink, T. ; Post, L. ; Doodeman, S. ; Littooij, E.
2019, Article / Letter to editor (Clinical Rehabilitation, (2019))
Self-management: challenges for allied healthcare professionals in stroke rehabilitation - a focus group study
Satink, T. ; Cup, Edith ; Swart, B.J.M. de ; Sanden, M.N. van
2015, Article / Letter to editor (Disability and Rehabilitation, vol. 37, iss. 18-19, (2015), pp. 1745-1752)Purpose: Self-management has become an important concept in stroke rehabilitation. This study explored allied healthcare professionals' (AHPs) perceptions and beliefs regarding the self-management of stroke survivors and their knowledge and skills regarding stroke self-management interventions. Method: Four focus group interviews were conducted with 27 professionals. Verbal questions and mind mapping were used to collect data. A constant comparative framework was used for analysis. Results: The AHPs discussed different levels of post-stroke self-management, depending on factors such as pre-stroke skills, recovery-phases post-stroke and cognitive abilities of the stroke patients. They hesitated about stroke clients' capacities to self-manage. AHPs questioned whether their own attitudes and skills were really supportive for stroke clients' self-management and criticised stroke services as being too medically oriented. They recommended that self-management programmes should focus both on clients and caregivers and be delivered at peoples' homes. Conclusion: Professional perceptions and beliefs are important factors to take into account when implementing stroke self-management programmes. Before professionals can enable stroke survivors to self-manage, they first need support in acquiring knowledge and skills regarding post-stroke self-management. Moreover, professionals could benefit from behavioural change models, and professionals recognised that stroke self-management interventions would be most beneficial when delivered post-discharge at people's homes.
Self-Management Support Needs From the Perspectives of Persons With Severe Mental Illness: A Systematic Review and Thematic Synthesis of Qualitative Research
Beentjes, T.A.A. ; Gaal, B.G.I. van ; Achterberg, Theo van ; Goossens, P.
2019, Article / Letter to editor (Journal of the American Psychiatric Nurses Association, (2019))
Self-Management Support Needs from the Perspectives of Persons with Severe Mental Illness: A Systematic Review and Thematic Synthesis of Qualitative Research
Beentjes, T.A.A. ; Gaal, B.G.I. van ; Achterberg, Theo van ; Goossens, P.
2020, Article / Letter to editor (Journal of the American Psychiatric Nurses Association, vol. 26, iss. 5, (2020))
Self-management develops through doing of everyday activities-a longitudinal qualitative study of stroke survivors during two years post-stroke
Satink, T. ; Josephsson, S ; Zajec, J. ; Cup, Edith ; Swart, B.J.M. de ; Nijhuis-van der Sanden, M.W.G.
2020, Article / Letter to editor (BMC Neurology, vol. 16, (2020))Background: A description of the complexity of the process of self-management and the way stroke survivors give meaning to their process of self-management post-stroke is lacking. This study explores how stroke survivors managed their lives, gave meaning to their self-management post-stroke and how this evolved over time. Methods: Data was generated through participant observations and interviews of 10 stroke survivors at their homes at 3, 6, 9, 15 and 21 months post-discharge. A constant comparative method was chosen to analyse the data. Results: 'Situated doing' was central in stroke survivors' simultaneous development of self-management and their sense of being in charge of everyday life post-stroke. Doing everyday activities provided the stroke survivors with an arena to explore, experience, evaluate, develop and adapt self-management and being in charge of everyday activities and daily life. The influence of stroke survivors' partners on this development was sometimes experienced as empowering and at other times as constraining. Over time, the meaning of self-management and being in charge changed from the opinion that self-management was doing everything yourself towards self-managing and being in charge, if necessary, with the help of others. Moreover, the sense of self-management and being in charge differed among participants: it ranged from managing only at the level of everyday activities to full role management and experiencing a meaningful and valuable life post-stroke. Conclusions: The findings of this study indicate the doing of activities as an important arena in which to develop self-management and being in charge post-stroke. Stroke self-management programs could best be delivered in stroke survivors' own environment and focus on not only stroke survivors but also their relatives. Furthermore, the focus of such interventions should be on not only the level of activities but also the existential level of self-management post-stroke.
Self-made & sound: e-health self-management support programs for patients with chronic conditions
Gaal, B.G.I. van ; Bredie, S.J.H. ; Goossens, P. ; Repping-Wuts, H ; Dulmen, S. van ; Nijhuis-van der Sanden, M.W.G.
2016, Article / Letter to editor (Journal of Advanced Nursing, vol. 72, (2016), pp. 82)
Room for improvement in non-pharmacological systemic sclerosis care?—a cross-sectional online survey of 650 patients
Stöcker, J.K. ; Vonk, M.C. ; Hoogen, F.H.C. van den ; Nijhuis-van der Sanden, M.W.G. ; Staal, J.B. ; Satink, T. ; Ende, C.H.M.
2020, Article / Letter to editor (Rheumatology, vol. 4, iss. 1, (2020), pp. 1-9)
Richtlijnen: Lust of last?
Sturkenboom, Ingrid ; Steultjens, E.M.J.
2012, Article / Letter to editor (Wetenschappelijk Tijdschrift voor Ergotherapie, vol. 5, iss. 1, (2012), pp. 52-56)Sinds evidence-based practice ingevoerd wordt in de gezondheidszorg heeft het ontwikkelen en implementeren van richtlijnen veel aandacht gekregen. Er zijn voor zeer veel verschillende aspecten van de zorg hoogwaardige richtlijnen beschikbaar. Ergotherapie is als discipline vertegenwoordigd in een groot aantal multidisciplinaire richtlijnen (www.artsennet.nl). Hierin wordt beschreven wat er bekend is over de wetenschappelijke onderbouwing van ergotherapie-interventies. Ook kent de beroepsgroep sinds een aantal jaren monodisciplinaire richtlijnen voor de gehele ergotherapiebehandeling zoals: de Ergotherapierichtlijn beroerte, inclusief de apraxierichtlijn (Cup & Steultjens, 2005; Stehmann, Van Heugten e.a, 2003), Valpreventie voor thuiswonende ouderen (Theune & Steultjens, 2005), Ergotherapie aan huis bij ouderen met dementie en hun mantelzorgers (Melick, Graff et al., 1998; Graff, Melick et al., 2010), Ergotherapie bij de ziekte van Parkinson en hun mantelzorgers (Sturkenboom et al., 2008) en de ergotherapierichtlijn vermoeidheid bij mensen met neurologische aandoeningen (Evenhuis , Eyssen et al., 2012). Door zorgverzekeraars, de overheid en patiëntenorganisaties worden richtlijnen beschouwd als kwaliteitscriteria van goede zorg. Dit leidt tot de verwachting dat de beroepsgroep conform de richtlijnen werkt. Wij zijn beide actief in het ontwikkelen en implementeren van ergotherapierichtlijnen en krijgen regelmatig uit de praktijk informatie over het werken met richtlijnen. We signaleren dat er zowel grote voordelen zijn aan het hebben van richtlijnen maar ook nadelen, omdat het werken conform richtlijnen nog al wat vraagt van een behandelaar. We vragen ons daarom af of richtlijnen nu een lust of een last zijn.
Reproducibility and validity of patient-rated assessment of speech, swallowing, and saliva control in Parkinson’s Disease
Zwarts, Machiel ; Kalf, Johanna ; Bloem, Bastiaan ; Borm, George ; Munneke, Marten ; Swart, B.J.M. de
2012, Article / Letter to editor (Archives of Physical Medicine and Rehabilitation, vol. 2011, iss. 92, (2012), pp. 1152-1158)To report on the development and psychometric evaluation of the Radboud Oral Motor Inventory for Parkinsons Disease (ROMP), a newly developed patient-rated assessment of speech, swallowing, and saliva control in patients with Parkinsons disease (PD). To evaluate reproducibility, 60 patients completed the ROMP twice within a mean of 24±12 days. To study validity, another cohort of 118 patients who had completed the ROMP was assessed by both a neurologist (HY stage, Unified Parkinsons Disease Rating Scale III) and speech-language pathologist (severity of dysarthria, dysphagia, drooling) who were blinded to ROMP scores. Confirmatory factor analysis identified the 3 a priori-designed ROMP domains of speech, swallowing, and saliva control. Internal consistency was .95 for the total ROMP and .87 to .94 for the 3 domains or subscales. Intraclass correlation coefficients for reproducibility were .94 and .83 to .92 for the subscales. Construct validity was substantial to good with correlations ranging from .36 to .82. The ROMP differentiated significantly (P<.001) between patients indicated for speech therapy (based on independent assessment) and those who were not and between mild, moderate, and severe PD according to HY stage. The ROMP provides a reliable and valid instrument to evaluate patient-perceived problems with speech, swallowing, and saliva control in patients with PD or AP.
Reliability and responsiveness of the Observable Movement Quality scale for children with mild to moderate motor impairments
Dekkers, L.M.A. ; de Swart, B.J.M. ; Jonker, M. ; Erp, P. ; Wisman, A. ; van der Wees, P. J. ; Nijhuis-vander Sanden, M.W.G ; Janssen, A.J.W.M.
2020, Article / Letter to editor (Physical and Occupational Therapy in Pediatrics, vol. 40, iss. 6, (2020), pp. 681-696)
Reflections of patients and therapists on a multidisciplinary rehabilitation programme for persons with brachial plexus injuries
Janssen, R. ; Satink, T. ; Ijspeert, J ; Alfen, N. van ; Groothuis, JT ; Packer, T.L. ; Cup, Edith
2019, Article / Letter to editor (Disability and Rehabilitation, vol. 41, iss. 12, (2019), pp. 1427-1434)Purpose: There is lack of knowledge, evidence, and guidelines for rehabilitation interventions for persons with neuralgic amyotrophy (NA) or brachial plexus pathology. A first pilot study, evaluating the effect of an integrated rehabilitation programme, showed improvements in activity and participation levels. Aim: To gain insight, from the perspective of patients and therapists, into the critical ingredients of the programme, that contributed to improvements in activity and participation. Materials and methods: A qualitative study using semi-structured interviews with eight patients and five therapists (three occupational therapists and two physical therapists). Participants were asked to identify and describe factors regarding the rehabilitation that they perceived as positive and aspects of the programme that could be improved. Data were analysed using a constant comparative approach. Results: Patients reported (1) Time to diagnose: "Finally I'm in the right place;" (2) Awareness: "They gave me a mirror;" (3) Partnership: "There was real contact with the therapists; we made decisions together;" (4) Close collaboration: "Overlapping scopes of practice; doing the same from a different perspective;" and finally (5) Self-management: "Now I can do it myself." Therapists reported (1) "Patients knowledge and understanding is critical to success;" (2) "Activate problem solving and decision making;" (3) "Personalize your therapy; it's more than just giving exercises and information;" (4) "Constant consultation within the team; consistency in messages and approach;" and (5)" Ultimately the patient is in charge." Conclusions: The critical ingredients, correspond well with each other and include a person-centred approach, education, support in problem solving and decision making and an integrated team approach. These ingredients provided the patients with confidence to take responsibility to manage their everyday lives, the ultimate goal of the programme.
Reader ‘Pitch Limiting Voice Treatment'
Swart, B.J.M. de
2018, Book (monograph)
Quantitative ultrasound of the tongue and submental muscles in children and young adults
Engel-Hoek, Lenie van den ; Pillen, S. ; Groot, M. de ; Swart, B.J.M. de ; Alfen, N. van
2012, Article / Letter to editor (Muscle and Nerve, vol. 46, iss. 1, (2012), pp. 31-37)The purpose of this study was to assess the feasibility of quantitative muscle ultrasound (QMUS) to visualize oral muscles and to establish normative data for muscle thickness and echo intensity of submental and tongue muscles in healthy children and young adults. The data were compared with those of 5 patients with Duchenne muscular dystrophy (DMD). Ultrasound images from the suprahyoid region and from the surface of the tongue were made in 53 healthy subjects aged 5 to 30 years. All measurements were feasible in all subjects and patients with good reproducibility except for the mylohyoid muscle. Muscle thickness depended on height, and echo intensity depended on weight. Our findings suggest gradual involvement of oral muscles in DMD. QMUS in oral muscles is feasible in healthy children, adults and patients with DMD. These data show that it is possible to differentiate between healthy persons and patients with DMD.
The Psychometric Evaluation of a Speech Production Test Battery for Children: The Reliability and Validity of the Computer Articulation Instrument
Haaften, L van ; Diepeveen, S.J.H. ; Engel-Hoek, Lenie van den ; Jonker, M. ; Swart, B.J.M. de ; Maassen, B
2019, Article / Letter to editor (Journal of Speech, Language, and Hearing Research, vol. 62, iss. 7, (2019), pp. 2141-2170)
Prognostic value of a decreased tongue strength for survival time in patients with amyotrophic lateral sclerosis
Swart, B.J.M. de ; Schelhaas, J. ; Weikamp, J. ; Hendriks, J.C.M. ; Geurts, Alexander
2012, Article / Letter to editor (Journal of Neurology, vol. 259, iss. 11, (2012), pp. 2360-2366)Decreased tongue strength (TS) might herald bulbar involvement in patients with amyotrophic lateral sclerosis (ALS) well before dysarthria or dysphagia occur, and as such might be prognostic of short survival. The purpose of this study was to investigate the prognostic value of a decreased TS, in addition to other prognostic factors, such as site of onset, bulbar symptoms, bulbar signs, age, sex, maximum phonation time, time from symptoms to diagnosis, and gastrostomy, for survival time in patients with ALS. TS was measured in four directions in 111 patients who attended the diagnostic outpatient motor neuron clinic of our university hospital. Of these patients, 54 were diagnosed with ALS. TS was considered abnormal if the strength in minimally one direction was at least two standard deviations below the reference values obtained from comparable age category and sex-groups of healthy controls (n = 119). Twenty of the patients with ALS had a decreased TS. Multivariable analysis showed that, in addition to age, TS was an independent prognostic factor for survival time in patients with ALS.
Profiling Speech Sound Disorders for Clinical Validation of the Computer Articulation Instrument
Haaften, L van ; Diepeveen, S.J.H. ; Terband, H ; Vermeij, B ; Engel-Hoek, Lenie van den ; Swart, B.J.M. de ; Maassen, B
2019, Article / Letter to editor (AMERICAN JOURNAL OF SPEECH-LANGUAGE PATHOLOGY, vol. 28, iss. 2, (2019), pp. 844-856)
Prevalence of oropharyngeal dysphagia in Parkinson’s disease : A meta-analysis
Bloem, Bastiaan ; Kalf, Johanna ; Munneke, Marten ; Swart, B.J.M. de
2012, Article / Letter to editor (Parkinsonism & Related Disorders, vol. 18, iss. 4, (2012), pp. 311-315)Dysphagia is a potentially harmful feature, also in Parkinsons disease (PD). As published prevalence rates vary widely, we aimed to estimate the prevalence of oropharyngeal dysphagia in PD in a meta-analysis. We conducted a systematic literature search in February 2011 and two independent reviewers selected the papers. We computed the estimates of the pooled prevalence weighted by sample size. Twelve studies were suitable for calculating prevalence rates. Ten studies provided an estimate based on subjective outcomes, which proved statistically heterogeneous (p < 0.001), with a pooled prevalence estimate with random effect analysis of 35% (95% CI 28-41). Four studies provided an estimate based on objective measurements, which were statistically homogeneous (p = 0.23), with a pooled prevalence estimate of 82% (95% CI 77-87). In controls the pooled subjective prevalence was 9% (95% CI 2-17), while the pooled objective prevalence was 23% (95% CI 13-32). The pooled relative risk was 3.2 for both subjective outcomes (95% CI 2.32-4.41) and objective outcomes (95% CI 2.08-4.98). Clinical heterogeneity between studies was chiefly explained by differences in disease severity. Subjective dysphagia occurs in one third of community-dwelling PD patients. Objectively measured dysphagia rates were much higher, with 4 out of 5 patients being affected. This suggests that dysphagia is common in PD, but patients do not always report swallowing difficulties unless asked. This underreporting calls for a proactive clinical approach to dysphagia, particularly in light of the serious clinical consequences.
Patients' Views on the Impact of Stroke on Their Roles and Self: A Thematic Synthesis of Qualitative Studies
Satink, T. ; Cup, Edith ; Ilott, I ; Prins, J ; Swart, B.J.M. de ; Nijhuis-van der Sanden, M.W.G.
2013, Article / Letter to editor (Archives of Physical Medicine and Rehabilitation, vol. 94, iss. 6, (2013), pp. 1171-1183)Objective: To synthesize patients' views on the impact of stroke on their roles and self. Data Sources: PubMed, CINAHL, Embase, PsycINFO, and Cochrane searched from inception to September 2010, using a combination of relevant Medical Subject Headings and free-text terms. This search was supplemented by reference tracking. Study Selection: Qualitative studies reporting the views of people poststroke. The search yielded 494 records. Opinion articles, quantitative studies, or those reporting somatic functioning were excluded. Thirty-three studies were included. Data Extraction: Data extraction involved identifying all text presented as "results" or "findings" in the included studies, and importing this into software for the analysis of qualitative data. Data Synthesis: The abstracted text was coded and then subject to a thematic analysis and synthesis, which was discussed and agreed by the research team. Three overarching themes were identified: (1) managing discontinuity is a struggle; (2) regaining roles: to continue or adapt? and (3) context influences management of roles and self. Regaining valued roles and self was an ongoing struggle, and discontinuity and uncertainty were central to the adjustment process after stroke. Conclusions: The thematic synthesis provides new insights into the poststroke experience. Regaining or developing a new self and roles was problematic. Interventions targeted at self-management should be focused on the recognition of this problem and included in rehabilitation, to facilitate adjustment and continuity as far as possible in life poststroke. (C) 2013 by the American Congress of Rehabilitation Medicine
Pathophysiology of diurnal drooling in Parkinson’s disease
Engel-Hoek, Lenie van den ; Kalf, Johanna ; Bloem, Bastiaan ; Borm, George ; Zwarts, Machiel ; Swart, B.J.M. de ; Munneke, Marten
2011, Article / Letter to editor (Movement Disorders, vol. 26, iss. 9, (2011), pp. 1670-1676)Drooling is an incapacitating feature of Parkinsons disease. Better pathophysiological insights are needed to improve treatment. In this study, we tested the hypothesis that the cause of drooling is multifactorial. We examined 15 patients with Parkinsons disease with distinct diurnal saliva loss ("droolers") and 15 patients with Parkinsons disease without drooling complaints ("nondroolers"). We evaluated all factors that could potentially contribute to drooling: swallowing capacity (maximum volume), functional swallowing (assessed with the dysphagia subscale of the Therapy Outcome Measures for rehabilitation specialists), unintentional mouth opening due to hypomimia (Unified Parkinsons Disease Rating Scale item), posture (quantified from sagittal photographs), and nose-breathing ability. We also quantified the frequency of spontaneous swallowing during 45 minutes of quiet sitting, using polygraphy. Droolers had more advanced Parkinsons disease than nondroolers (Unified Parkinsons Disease Rating Scale motor score 31 vs 22; P=.014). Droolers also scored significantly worse on all recorded variables except for nose breathing. Swallowing frequency tended to be higher, possibly to compensate for less efficient swallowing. Logistic regression with adjustment for age and disease severity showed that hypomimia correlated best with drooling. Linear regression with hypomimia as the dependent variable identified disease severity, dysphagia, and male sex as significant explanatory factors. Drooling in Parkinsons disease results from multiple risk factors, with hypomimia being the most prominent. When monitored, patients appear to compensate by increasing their swallowing frequency, much like the increased cadence that is used to compensate for stepping akinesia. These findings can provide a rationale for behavioral approaches to treat drooling.
Organizational leadership, health risk screening, individually tailored programs, and supportive workplace culture might reduce presenteeism
Steultjens, E.M.J. ; Baker, E. ; Aas, N. ; Randi, W.
2012, Article / Letter to editor (Australian Occupational Therapy Journal, vol. 59, iss. 3, (2012), pp. 247-250)To determine if Workplace Health Promotion programs (WHPs) are effective in improving presenteeism. The secondary objective was to identify characteristics of successful programmes and potential risk factors for presenteeism. The Cochrane Library, Medline and other electronic databases were searched from 1990 to January 2010 for all studies that examined WHP. A highly sensitive search strategy was used including reference list checking, hand searching, and contacting researchers. Fourteen studies (four strong and ten moderate methodological quality) were eligible for inclusion. A further 33 were considered ineligible for inclusion due to methodological weakness. The 14 eligible studies contained preliminary evidence for a positive effect of some WHP programs. Successful programs offered organizational leadership, health risk screening, individually tailored programs, and a supportive workplace culture. Potential risk factors contributing to presenteeism included being overweight, poor diet, lack of exercise, high stress, and poor relations with co-workers and management. There is preliminary evidence that some WHP programs can positively affect presenteeism and that certain risk factors are of importance. The presenteeism literature is young and heterogeneous.
Oral muscles are progressively affected in Duchenne muscular dystrophy : Implications for dysphagia treatment
Swart, B.J.M. de ; Klein, W. ; Engel-Hoek, Lenie van den ; Pillen, S. ; Hendriks, J.C.M. ; Geurts, Alexander ; Groot, M. de ; Sie, L. ; Erasmus, C.
2012, Article / Letter to editor (Journal of Neurology, vol. 260, iss. 5, (2012), pp. 1295-1303)Dysphagia is reported in advanced stages of Duchenne muscular dystrophy (DMD). The population of DMD is changing due to an increasing survival. We aimed to describe the dysphagia in consecutive stages and to assess the underlying mechanisms of dysphagia in DMD, in order to develop mechanism based recommendations for safe swallowing. In this cross-sectional study, participants were divided into: early and late ambulatory stage (AS, n = 6), early non-ambulatory stage (ENAS, n = 7), and late non-ambulatory stage (LNAS, n = 11). Quantitative oral muscle ultrasound was performed to quantify echo intensity. Swallowing was assessed with a video fluoroscopic swallow study, surface electromyography (sEMG) of the submental muscle group and tongue pressure. Differences in outcome parameters among the three DMD stages were tested with analysis of variance. Oral muscles related to swallowing were progressively affected, starting in the AS with the geniohyoid muscle. Tongue (pseudo) hypertrophy was found in 70 % of patients in the ENAS and LNAS. Oral phase problems and post-swallow residue were observed, mostly in the LNAS with solid food. sEMG and tongue pressure data of swallowing solid food revealed the lowest sEMG amplitude, the longest duration and lowest tongue pressure in the LNAS. In case of swallowing problems in DMD, based on the disturbed mechanisms of swallowing, it is suggested to (1) adjust meals in terms of less solid food, and (2) drink water after meals to clear the oropharyngeal area.
Opening the black box of non-pharmacological care in systemic sclerosis: a cross-sectional online survey of Dutch health professionals
Stöcker, J.K. ; Vonk, M.C. ; Hoogen, F.H.C. van den ; Nijhuis-van der Sanden, M.W.G. ; Spierings, J ; Staal, J.B. ; Satink, T. ; Ende, C.H.M.
2020, Article / Letter to editor (Rheumatology International, (2020))
Ontwikkeling van criteria voor indicatiestelling fysiotherapie binnen verpleeghuizen
Hobbelen, H. ; Leemrijse, C. ; Ravensberg, Dorine van ; Koopmans, R.T. ; Swart, B.J.M. de ; Haastert, C. van ; Veenhof, C.
2011, Article / Letter to editor (Fysiotherapie en Ouderenzorg, vol. 25, iss. 3, (2011), pp. 5-16)Er bestaat een grote variatie in het percentage bewoners per verpleeghuis dat wel of geen fysiotherapeutische zorg ontvangt. Hierdoor is het onduidelijk of de juiste groep wel fysiotherapie ontvangt. Er is dan ook behoefte aan meer transparantie en standaardisatie van de indicatiestelling fysiotherapie in verpleeghuizen. Het doel van deze studie is om criteria te ontwikkelen voor de indicatiestelling fysiotherapie in verpleeghuizen en deze te toetsen in de praktijk.
Occupational therapy for care home residents with stroke
Sackley, C. ; Walker, M. ; Steultjens, E.M.J. ; Feltham, M. ; Fletcher-Smith, J.
2012, Article / Letter to editor (The Cochrane Library, vol. 2012, iss. 10, (2012))In this systematic review we aim to measure the effects of occupational therapy interventions (provided directly by an occupational therapist or under the supervision of an occupational therapist) targeted at improving, restoring and maintaining independence in ADL (to include both self-care and leisure activities) among stroke survivors residing in long-term institutional care termed collectively as ’care homes’ (care homes, residential homes, nursing homes, aged-care facilities, long-term care institutions, and older peoples homes). As a secondary outcome we will also evaluate occupational therapy interventions aimed at reducing complications such as depression and low mood.
Nursing home-acquired pneumonia, dysphagia and associated diseases in nursing home residents: A retrospective, cross-sectional study
Hollaar, V.R.Y. ; Putten, GJ van der ; Van der Maarel -Wierink, CD ; Bronkhorst, E.M. ; Swart, B.J.M. de ; Baat, C de ; Creugers, N.H.J.
2017, Article / Letter to editor (Geriatric Nursing, vol. 38, (2017), pp. 437-441)
Normen van de Peabody Picture Vocabulary Test-III-NL
Bekering, S ; Alons, E ; Daatselaar, M ; van Sasse van IJsselt, M ; Suidman, L ; Remijn, C.S.M. ; Bruinsma, G
2020, Article / Letter to editor (Nederlands Tijdschrift voor Logopedie, vol. 92, iss. 6, (2020), pp. 18-25)
NEON (Netwerk Ergotherapie Onderzoekers Nijmegen) stelt zich voor
Hartingsveldt, Margo van ; Sturkenboom, Ingrid ; Graff, Maud ; Satink, T. ; Cup, Edith
2009, Article / Letter to editor (Wetenschappelijk Tijdschrift voor Ergotherapie, vol. 2009, iss. 4, (2009), pp. 24-26)NEON is een Netwerk voor Ergotherapie Onderzoekers in de regio Nijmegen. Een van de doelstellingen van NEON is dat het een bijdrage wil leveren aan visieontwikkeling en uitvoering van ergotherapieonderzoek. In dit artikel stelt NEON zich kort aan u voor, gaan we in op de voordelen van het samenwerkingsverband en geven we een korte reactie op de Europese onderzoeksagenda.
Negotiating role management through everyday activities: narratives in action of two stroke survivors and their spouses
Satink, T. ; Josephsson, S ; Zajec, J. ; Cup, Edith ; Swart, B.J.M. de ; Nijhuis-van der Sanden, M.W.G.
2016, Article / Letter to editor (Disability and Rehabilitation, vol. 38, iss. 24-26, (2016), pp. 2354-2364)Purpose: To manage social roles is a challenging part of self-management post-stroke. This study explored how stroke survivors act as role managers with their spouses in the context of everyday activities. Method: Two stroke survivors with a first time stroke living at home with a spouse were included. Data were generated through participant observations at their own environment at 3, 6, 9, 15 and 21 months post-discharge. The narrative analysis focused on the actions of participants. Results: Daily activities can be understood as an arena where role management and a meaningful live is negotiated and co-constructed with others. Everyday activities gave stroke survivors and their spouses insight into stroke survivors' capacities in daily situations. This was sometimes empowering, and other times conflicting when a spouse had negative perceptions of the abilities of the stroke survivors. Conclusion: The findings add to the current understanding of self-management and role management with regard to how these are situated in everyday activities. Daily activities can help both spouses to reflect and understand about self-management, role management and comanagement in daily life. Moreover, observing stroke survivors in everyday situations provides professionals with concrete pictures of stroke survivors' performance and self-management in interaction with their spouses.
Narrative exposure therapy for posttraumatic stress disorder associated with repeated interpersonal trauma in patients with severe mental illness: a mixed methods design
Mauritz, MW ; Gaal, B.G.I. van ; Jongedijk, RA ; Schoonhoven, Lisette ; Nijhuis-van der Sanden, M.W.G. ; Goossens, P.
2016, Article / Letter to editor (European Journal of Psychotraumatology, vol. 7, (2016))Background: In the Netherlands, most patients with severe mental illness (SMI) receive flexible assertive community treatment (FACT) provided by multidisciplinary community mental health teams. SMI patients with comorbid posttraumatic stress disorder (PTSD) are sometimes offered evidence-based trauma-focused treatment like eye movement desensitization reprocessing or prolonged exposure. There is a large amount of evidence for the effectiveness of narrative exposure therapy (NET) within various vulnerable patient groups with repeated interpersonal trauma. Some FACT-teams provide NET for patients with comorbid PTSD, which is promising, but has not been specifically studied in SMI patients. Objectives: The primary aim is to evaluate NET in SMI patients with comorbid PTSD associated with repeated interpersonal trauma to get insight into whether (1) PTSD and dissociative symptoms changes and (2) changes occur in the present SMI symptoms, care needs, quality of life, global functioning, and care consumption. The second aim is to gain insight into patients' experiences with NET and to identify influencing factors on treatment results. Methods: This study will have a mixed methods convergent design consisting of quantitative repeated measures and qualitative semi-structured in-depth interviews based on Grounded Theory. The study population will include adult SMI outpatients (n = 25) with comorbid PTSD and receiving NET. The quantitative study parameters will be existence and severity of PTSD, dissociative, and SMI symptoms; care needs; quality of life; global functioning; and care consumption. In a longitudinal analysis, outcomes will be analyzed using mixed models to estimate the difference in means between baseline and repeated measurements. The qualitative study parameters will be experiences with NET and perceived factors for success or failure. Integration of quantitative and qualitative results will be focused on interpreting how qualitative results enhance the understanding of quantitative outcomes. Discussion: The results of this study will provide more insight into influencing factors for clinical changes in this population.
Myd & Eat: a multidisciplinary intervention for myotonic dystrophy regarding food intake and nutrition
Hees, SGM van ; Knuijt, S. ; Dicke, H ; Satink, T. ; Raaphorst, J ; Groothuis, JT ; Cup, Edith
2017, Article / Letter to editor (Neuromuscular Disorders, vol. 27, (2017), pp. S181)
Multifaceted interventions are required to improve physical activity behaviour in hospital care: a meta-ethnographic synthesis of qualitative research
Koenders, N. ; Marcellis, L ; Nijhuis-van der Sanden, M.W.G. ; Satink, T. ; Hoogeboom, Th.
2021, Article / Letter to editor (Journal of Physiotherapy, vol. 67, iss. 2, (2021), pp. 115-123)Question: What are the views of patients, close relatives and healthcare professionals on physical activity behaviour in hospital care? Methods: A meta-ethnographic synthesis of qualitative studies was conducted with a lines-of-argument analysis. The methodological quality of included studies was evaluated using the Critical Appraisal Skills Programme (CASP) checklist. The lines of argument were synthesised and mapped in an existing theoretical model. The confidence of evidence was assessed using the Grading of Recommendations Assessment, Development and Evaluation Confidence in Evidence from Reviews of Qualitative Research (GRADE-CERQual) approach. Results: Eleven studies were included and provided data from 290 participants (145 patients, 0 close relatives and 145 healthcare professionals). We have synthesised six lines of argument that explained the (intention of) physical activity behaviour of patients during their hospital stay: patients and healthcare professionals perceive benefits and risks of physical activity for patients' health (high confidence); physical activity gives a sense of freedom, confidence in recovery and mental wellbeing (high confidence); all healthcare professionals should offer timely and tailored physical activity promotion (high confidence); patient motivation to be physically active may be contingent upon encouragement (moderate confidence); family members can influence physical activity behaviour favourably or unfavourably (low confidence); and hospital culture has a negative influence on physical activity behaviour of patients (high confidence). Conclusions: Physical activity behaviour of patients during their hospital stay is a complex phenomenon with multiple interactions at the level of patients, healthcare professionals and hospital culture. Considering the results of this synthesis, multifaceted implementation strategies are needed to improve physical activity intention and behaviour of patients during their hospital stay. (C) 2021 Australian Physiotherapy Association. Published by Elsevier B.V.
Meet and eat, an interdisciplinary group intervention for patients with myotonic dystrophy about healthy nutrition, meal preparation, and consumption: a feasibility study
Hees, SGM van ; Knuijt, S. ; Dicke, H ; Groothuis, JT ; Raaphorst, J ; Satink, T. ; Cup, Edith
2020, Article / Letter to editor (Disability and Rehabilitation, vol. 42, iss. 11, (2020), pp. 1561-1568)Purpose: To develop and evaluate an interdisciplinary group intervention for patients with myotonic dystrophy regarding healthy nutrition, meal preparation, and consumption, called Meet and Eat. Materials and methods: A design-based approach was used, exploring experiences and needs of patients with myotonic dystrophy and their next of kin. This resulted in a 4-week interdisciplinary outpatient group intervention to increase awareness and change behavior. In a mixed-method feasibility study this intervention was evaluated with participants and facilitators. Results: Participants reported on social impact of difficulties with eating and drinking (speaking, swallowing, and social embarrassment) and a variety of complaints affecting meal preparation and consumption. Patients and family members expressed the wish to learn from others. After delivery of the intervention, self-reported outcome measures demonstrated improvement on eating and drinking issues in daily life. The qualitative evaluation showed increased awareness and appreciation of the following design principles: peer support, multidisciplinary approach, active involvement of patient with myotonic dystrophy and their next of kin by using personal goals and motivational interviewing. Conclusion: Participation in Meet and Eat seemed to increase insight in patients' condition and ways of management. However, a longer self-management life style program is recommended to change behavior.
Maatschappijgerichte ergotherapie: What’s in the name?
Minis, Marie-Antoinett van ; Satink, T.
2011, Article / Letter to editor (Wetenschappelijk Tijdschrift voor Ergotherapie, vol. 4, iss. 3, (2011), pp. 60-63)In deze column zullen wij stilstaan bij het concept CBOT, en de concepten ‘community’ en ‘occupation’. We hopen met deze column een discussie op gang te brengen over een nieuwe ontwikkeling in Nederland en aan te geven hoe belangrijk het is om (vertaalde) concepten goed te definiëren.
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.

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