- HAN Publications
- Publications
- Han Publications
- Browsing Han Publications by Author
JavaScript is disabled for your browser. Some features of this site may not work without it.
Browsing Han Publications by Author "Cup, Edith"
Now showing items 1-17 of 17
-
Meten is weten – Steeds meer aandacht voor meten vanuit cliëntperspectief van de cliënt: de PRO-Ergo 2022, Article / Letter to editor (Ergotherapie Magazine, vol. 3, (2022), pp. 14-16) -
Meet and eat, an interdisciplinary group intervention for patients with myotonic dystrophy about healthy nutrition, meal preparation, and consumption: a feasibility study 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. -
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.
-
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, N2019, Article / Letter to editor (Neuromuscular Disorders, vol. 29, (2019), pp. S52)
-
Reflections of patients and therapists on a multidisciplinary rehabilitation programme for persons with brachial plexus injuries 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.
-
The perspectives of spouses of stroke survivors on self-management – a focus group study. 2018, Article / Letter to editor (Disability and Rehabilitation, vol. 40, (2018), pp. 176-184)
-
Experiences with bariatric surgery in patients with facioscapulohumeral dystrophy and myotonic dystrophy type 1: A qualitative study Abel, EEDH ; Cup, Edith ; Lanser, A ; Leclercq, WKG ; Raaphorst, J ; Padberg, GW ; Satink, T. ; Voermans, N2018, Article / Letter to editor (Neuromuscular Disorders, vol. 28, iss. 11, (2018), pp. 938-946)Overweight and obesity are common in patients with facioscapulohumeral dystrophy (FSHD) and myotonic dystrophy type 1 (DM1). Lifestyle change is often challenging for patients with neuromuscular diseases, especially to increase physical activity. When lifestyle changes have not been effective, bariatric surgery is a treatment option. However, very little is known about the benefits and risks in patients with neuromuscular disorders. This study therefore aims to obtain insight into the patients' perspectives and experiences, the outcome, effects and risks of bariatric surgery in these disorders. We performed a qualitative study, consisting of 14 in-depth interviews with six patients (three FSHD and three DM1; five women, one man; aged range 31-47 years), four relatives, three bariatric surgeons and one general practitioner. The study used a qualitative descriptive method. Four themes were formulated: (1) overweight as burden; (2) bariatric surgery as last option; (3) not your standard patient; and (4) a different life, a different me. This study shows that bariatric surgery has beneficial physical and mental effects for most patients with FSHD and DM1, and does not influence the muscular disease course. Bariatric surgery is feasible in patients with FSHD and DM1, but specific precautions and a suitable follow-up including tailored dietary and training advices are required. (C) 2018 Elsevier B.V. All rights reserved.
-
Myd & Eat: a multidisciplinary intervention for myotonic dystrophy regarding food intake and nutrition 2017, Article / Letter to editor (Neuromuscular Disorders, vol. 27, (2017), pp. S181)
-
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, A2016, Article / Letter to editor (Neuromuscular Disorders, vol. 26, (2016), pp. S147-S148)
-
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.
-
Self-management: challenges for allied healthcare professionals in stroke rehabilitation - a focus group study 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.
-
How is self-management perceived by community living people after a stroke? A focus group study 2015, Article / Letter to editor (Disability and Rehabilitation, vol. 37, iss. 3, (2015), pp. 223-230)Purpose: Self-management has become an important concept in stroke rehabilitation; however, the way that people post-stroke reflect on the concept of self-management has not yet been studied. This qualitative study explored the reflections of persons post-stroke on self-management, readiness and needs in self-management support. Methods: Focus group interviews were conducted with 16 community living stroke survivors (53-84 years of age). Both verbal questions and photo elicitations were used to collect data. A constant comparative framework was used for the analysis. Result: Participants described their self-management as a complex, long-term, personal learning process. Post-discharge, participants were not ready to self-manage. Aside from individual self-management, participants also mentioned co-management with relatives. Relatives could provide support, but they also limited the development of participants' self-management skills. Participants missed having professional support post-discharge and would have appreciated additional psychological and emotional support in their process of self-management. Conclusion: Self-management post-stroke is complex. Stroke self-management programmes may be optimised when integrating role and emotional management in addition to medical management. Although readiness to self-manage differs among individuals, support should start as soon as possible and continue post-discharge in people's personal environments. Self-management programmes should not only focus on self-management of stroke survivors but also on co-management with relatives.
-
Patients' Views on the Impact of Stroke on Their Roles and Self: A Thematic Synthesis of Qualitative Studies 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
-
De herziene ergotherapierichtlijn CVA : Nóg meer evidence-based, cliëntgecentreerd en gericht op het handelen in de context! 2012, Article / Letter to editor (Wetenschappelijk Tijdschrift voor Ergotherapie, vol. 5, iss. 4, (2012), pp. 53-58)De herziene ergotherapierichtlijn CVA (Cerebraal Vasculair Accident) is volop in ontwikkeling en wordt in maart 2013 gepresenteerd. De herziene richtlijn is vanzelfsprekend nóg meer evidence-based, cliëntgecentreerd, op het handelen gericht en in de context gesitueerd. Deze column heeft een informatief karakter en geeft een voorproefje van de vernieuwingen die in de herziene ergotherapierichtlijn CVA worden opgenomen. Deze herzieningen sluiten aan bij de Zorgstandaard CVA/TIA die in november 2012 gepresenteerd is aan het werkveld (1). In de zorgstandaard wordt beschreven wat zorgverleners, cliënten en familie mogen verwachten van de zorg aan CVA-cliënten in alle fases van zorg na het CVA en dit is gebaseerd op de wensen en verwachtingen van cliënten en hun naasten. Ontwikkelingen waar de ergotherapierichtlijn CVA naadloos bij aansluit zijn de wens dat zorg goed aansluit op het functioneren thuis en het hebben van meer regie door cliënten en naasten tijdens het zorgproces.
-
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, Rob2012, 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. van2011, 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.
-
NEON (Netwerk Ergotherapie Onderzoekers Nijmegen) stelt zich voor 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.
Now showing items 1-17 of 17
Browse
-
All of HAN Publications
-
This Collection