Health professionals' experiences with the PEDI-UG: What do Ugandan occupational therapists say about the utility and value of the Pediatric Evaluation of Disability Inventory (PEDI-UG) for children with disabilities?

BACKGROUND: The Uganda version of Pediatric Evaluation of Disability Inventory (PEDI-UG) was culturally adapted and validated from the PEDI-US, a tool used to evaluate the functional capability of children with or without disability aged 6 months to 7.5 years in the areas of self-care, mobility and social domains. A group of Ugandan occupational therapists with experience of using PEDI-UG participated in this study to explore the question: What do Ugandan occupational therapists say about the utility and value of the PEDI-UG for children with disabilities? METHODS: A qualitative research design was chosen to explore the participants' viewpoints concerning the utility and value of the PEDI-UG for children with disabilities. Purposive sampling was used to recruit health professionals for the focus group discussions. Focus group discussions were carried out with 18 occupational therapists and nurses. Thematic analysis was performed to establish patterns and themes. RESULTS: Several challenges concerning the contextual use of PEDI-UG were reported. For example, PEDI-UG being culturally adapted in two languages (English and Luganda) makes it difficult for health professionals to use it for children whose caregivers are non-English or non-Luganda speakers. In addition, participants reported adapting the way they asked the assessment questions, struggling with how they interpreted the scores and observing the child's skills if required during PEDI-UG interviews with caregivers. CONCLUSIONS: The findings of this study suggest that health professionals are challenged with the use of the PEDI-UG assessment in diverse cultural contexts and/or languages. These challenges are important considerations for the PEDI-UG translation in different Uganda cultural languages and training health professionals on the use and value of PEDI-UG for children with disabilities.

Care-resistant behaviour during oral examination in Dutch nursing home residents with dementia.

OBJECTIVE: To assess the occurrence and associations of verbal and non-verbal care-resistant behaviour (CRB) during oral examination by a dental hygienist in nursing home residents with dementia. BACKGROUND: CRB is a barrier to providing professional oral care and daily oral hygiene care. Understanding the predictors of CRB might help care professionals in learning to anticipate this behaviour. METHODS: In this multicentre cross-sectional study signs of verbal and non-verbal CRB were reported during the oral examination. Data collection occurred in the psychogeriatrics wards of 14 different nursing homes in the Netherlands (N = 367). RESULTS: A total of 367 residents were included. CRB was evident in 82 residents (22.3%), of whom 45 (55%) showed verbal and 37 (45%) non-verbal CRB. Associated with CRB were age >85 years, duration of residential stay longer than 2 years, and having Korsakov dementia. Other factors associated with CRB were duration of residential stay (categories ">2 and ≤4 years" or ">4 years") and having a natural dentition (P = .043-.005, OR = 1.20-1.33, 95% CI = 1.00-8.48). Significant associations for verbal and non-verbal CRB were age between 76 and 85 years, vascular dementia and Korsakov dementia (P = .031-.006, OR = .020-1.49, 95% CI = 0.43-2.15). CONCLUSION: The occurrence of CRB was 22.3% and was associated with older age and longer duration of residential stay, Vascular and Korsakov dementia and natural dentition.

Evidence and consensus-based recommendations for non-pharmacological treatment of fatigue, hand function loss, Raynaud's phenomenon and digital ulcers in patients with systemic sclerosis.

OBJECTIVE: SSc is a complex CTD affecting mental and physical health. Fatigue, hand function loss, and RP are the most prevalent disease-specific symptoms of systemic sclerosis. This study aimed to develop consensus and evidence-based recommendations for non-pharmacological treatment of these symptoms. METHODS: A multidisciplinary task force was installed comprising 20 Dutch experts. After agreeing on the method for formulating the recommendations, clinically relevant questions about patient education and treatments were inventoried. During a face-to-face task force meeting, draft recommendations were generated through a systematically structured discussion, following the nominal group technique. To support the recommendations, an extensive literature search was conducted in MEDLINE and six other databases until September 2020, and 20 key systematic reviews, randomized controlled trials, and published recommendations were selected. Moreover, 13 Dutch medical specialists were consulted on non-pharmacological advice regarding RP and digital ulcers. For each recommendation, the level of evidence and the level of agreement was determined. RESULTS: Forty-one evidence and consensus-based recommendations were developed, and 34, concerning treatments and patient education of fatigue, hand function loss, and RP/digital ulcers-related problems, were approved by the task force. CONCLUSIONS: These 34 recommendations provide guidance on non-pharmacological treatment of three of the most frequently described symptoms in patients with systemic sclerosis. The proposed recommendations can guide referrals to health professionals, inform the content of non-pharmacological interventions, and can be used in the development of national and international postgraduate educational offerings.

Setting meaningful goals in rehabilitation: A qualitative study on the experiences of clients and clinicians in working with a practical tool.

OBJECTIVE: To evaluate the experience of clients and clinicians in working with a tool to help set goals that are personally meaningful to rehabilitation clients. DESIGN: We have applied the tool in the outpatient rehabilitation setting. Clients' and clinicians' experiences in working with the tool were evaluated in individual, semi-structured interviews and focus group interviews, respectively. Thematic analysis was used to analyze the data. SETTING: A university medical center and a rehabilitation center. SUBJECTS: Clients with a first-time stroke (n = 8) or multiple sclerosis (n = 10), and clinicians (n = 38). INTERVENTION: The tool to help set meaningful goals consisted of a session (i) to explore the client's fundamental beliefs, goals and attitudes and (ii) to identify a meaningful overall rehabilitation goal. The results of that session were used by the multidisciplinary rehabilitation team (iii) to help the client to set specific rehabilitation goals that served to achieve the meaningful overall rehabilitation goal. RESULTS: Both clients and clinicians reported that the tool helped to set a meaningful overall rehabilitation goal and specific goals that became meaningful as they served to achieve the overall goal. This contributed to clients' intrinsic rehabilitation motivation. In some clients, the meaningfulness of the rehabilitation goals facilitated the process of behavior change. Both clients and clinicians made suggestions on how the tool could be further improved. CONCLUSION: In the opinion of both clients and clinicians, the tool does indeed result in goal setting that is personally meaningful. Further development, implementation and evaluation of the tool is warranted.

Opening the black box of non-pharmacological care in systemic sclerosis: a cross-sectional online survey of Dutch health professionals.

The objective is to describe the spectrum of the health professional (HP) treatment approach for systemic sclerosis (SSc) from the perspective of Dutch HPs, including alignment of treatment goals set by HPs with self-reported referral reasons, coverage of patient-reported unmet care needs, and quality of communication between HPs and rheumatologists. Dutch HPs were invited through their patients with SSc to complete an anonymous online survey. The survey covered referral reasons, treatment goals, and interventions of the last patient treated, as well as the perceived quality of communication between HPs and rheumatologists. Referral reasons and treatment targets were linked to the International Classification of Functioning, Disability and Health following the refined ICF Linking Rules. Seventy-nine HPs from 8 professions (including 58 physiotherapists, 73%) completed the survey. One hundred and thirty-three different referral reasons were reported, yielding 58 different ICF codes, with 41 (70.7%) being linked to the ICF domain "body structures and functions." The reported interventions focused on body functions/structures (27.9%), training of daily activities (25.6%), education and advice (26.3%), and psychosocial interventions (20.2%). The quality of communication between HPs and rheumatologists was perceived as low. Our findings revealed numerous treatment options offered by Dutch HPs addressing the unmet care needs of patients with SSc. There is an overlap in the content of the various HP disciplines, and HP treatment goals are not sufficiently aligned with referrals of rheumatologists. HP treatment offer seemed inefficiently organized, possibly precluding rheumatologists from making targeted referrals. Communication between rheumatologists and HPs should be improved.

Setting meaningful goals in rehabilitation: rationale and practical tool.

CONTEXT: Goal-setting is a key characteristic of modern rehabilitation. However, goals need to be meaningful and of importance to the client. AXIOMS: Both theories and empirical evidence support the importance of a hierarchy of goals: one or more overall goals that clients find personally meaningful and specific goals that are related to the overall goals. We posit that the client's fundamental beliefs, goals and attitudes ("global meaning") need to be explored before setting any rehabilitation goal. A chaplain or other person with similar skills can be involved in doing so in an open-ended way. The client's fundamental beliefs, goals and attitudes serve as a point of departure for setting rehabilitation goals. SETTING GOALS: We set out a three-stage process to set goals: (1) exploring the client's global meaning (i.e. fundamental beliefs, goals and attitudes), (2) deriving a meaningful overall rehabilitation goal from the client's global meaning and (3) setting specific rehabilitation goals that serve to achieve the meaningful overall rehabilitation goal. CONCLUSION: This is an extension of current practice in many rehabilitation teams, which may help counter the drive toward exclusively functional goals based around independence.

Self-management develops through doing of everyday activities-a longitudinal qualitative study of stroke survivors during two years post-stroke.

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.

European-French Cross-Cultural Adaptation of the Developmental Coordination Disorder Questionnaire and Pretest in French-Speaking Switzerland.

UNLABELLED: The Developmental Coordination Disorder Questionnaire (DCDQ'07) is a Canadian-English instrument recommended for screening children aged 5 to 15 years who are at risk for developmental coordination disorder. While a Canadian-French version of the DCDQ'07 presently exists, a European-French version does not. AIMS: To produce a cross-cultural adaptation of the DCDQ'07 for use in areas of Europe where French is spoken and to test its cultural relevance in French-speaking Switzerland. METHODS: Cross-cultural adaptation was done using established guidelines. Cultural relevance was analyzed with cognitive interviews of thirteen parents of children aged 5.0 to 14.6 years (mean age: 8.5 years, SD = 3.4), using think-aloud and probing techniques. RESULTS: Cultural and linguistic differences were noted between the European-French, the Canadian-French, and the original versions of the DCDQ'07. Despite correct translation and expert committee review, cognitive interviews revealed that certain items of the European-French version were unclear or misinterpreted and further modifications were needed. CONCLUSIONS: After rewording items as a result of the outcomes of the cognitive interview, the European-French version of the DCDQ'07 is culturally appropriate for use in French-speaking Switzerland. Further studies are necessary to determine its psychometric properties.

How persons with a neuromuscular disease perceive employment participation: a qualitative study.

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 reorganisation 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. CONCLUSIONS: Implications for health professionals might include awareness of the significant impact of changes in physical condition on employment. Timely communication and if appropriate referral to a health or occupational professional may empower employees with NMD to handle employment issues at a for themselves appropriate way. Assistive products and a supportive superior might enhance employment participation.

Patients' views on the impact of stroke on their roles and self: a thematic synthesis of qualitative studies.

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.

"Standing alone": understanding the self-management of family caregivers of persons post-stroke at the time of acute care.

PURPOSE: To support family caregivers of persons post-stroke adequately from the start and to develop self-management interventions, we aim to gain a better understanding of family caregivers experiences at the time of acute care and therefore achieve a better understanding of how they manage their new situation. METHODS AND MATERIALS: We chose a qualitative descriptive methodology using individual semi-structured interviews with eleven family caregivers of persons post-stroke. We conducted interviews retrospectively, between 2 and 10 months post-stroke, and analysed transcripts using thematic analysis. RESULTS: The themes (1) being in survival mode, (2) feeling supported by family and friends, (3) feeling left alone by the treatment team and (4) insisting on information emerged from the data. CONCLUSION: During acute care, many self-management skills are required from family caregivers but are just starting to be developed. This development can first be observed as co-management with the social network and is often combined with shared decision-making. Information-sharing, foundational for developing self-management, is essential for family caregivers and should be supported proactively by health professionals from the beginning. Further, from the start, health professionals should raise awareness about role changes and imbalances of activities among family caregivers to prevent negative influences on their health.

Implications for RehabilitationFamily caregivers' development of self-management starts in acute care and needs more guidance from health professionals.All health professionals should take a proactive, partnership attitude towards family caregivers to better support them in developing self-management skillsDifferent forms of self- management, such as co-management with family and friends, need to be considered when developing self-management programs for family caregivers.During acute care, family caregivers benefit from repeated information. Besides verbal information health professionals should consider different methods for providing information, including written, visual or audiotaped methods.Health professionals should raise awareness among family caregivers about the topics of role changes and the importance of a balance of activities. They should provide information about these topics to promote the caregivers' health and well-being.

Development of simple descriptions of the ICF Generic-30 Set in different languages: laying the foundation for an ICF-based clinical tool for Europe.

BACKGROUND: Functioning is considered a third indicator of health and a key outcome in rehabilitation. A universal practical tool for collecting functioning information is essential. This tool would be ideally based on the International Classification of Functioning, Disability and Health. AIM: To report the results of the development of country/language-specific versions of an ICF-based clinical tool in six European countries. DESIGN: Consensus process. SETTING: Expert conferences. POPULATION: Multi-professional group of rehabilitation professionals in six European countries. METHODS: 1) Developed an initial proposal by translating the published English-language version of the simple descriptions into the targeted language; 2) conducted a multi-stage consensus conference to finalize the descriptions; 3) employed a three-stage multi-professional expert panel translation back to English. The consensus conference model was modified for geographically large countries. RESULTS: Croatian, Flemish/Dutch, Greek, Polish, and Turkish versions were produced. CONCLUSIONS: The creation of the country/language-specific simple descriptions is a significant part of the "system-wide implementation of the ICF" initiative that will pave the way for the implementation of the ICF in national health systems. CLINICAL REHABILITATION IMPACT: The practical ICF-based clinical tool with country/language specific versions for standardized reporting of functioning will serve as a means of integrating functioning information in national health systems and additionally for monitoring the effects of rehabilitation interventions.

Self-Management Analysis in Chronic Conditions (SMACC) checklist: an international consensus-based tool to develop, compare and evaluate self-management support programmes.

OBJECTIVES: The Self-Management Analysis in Chronic Conditions (SMACC) checklist was developed as a guidance tool to support the development, comparison and evaluation of self-management support programmes for persons with a chronic condition. The checklist was based on a previously performed concept analysis of self-management. The aim of this study was to validate its content using an international Delphi study and to deliver a final version. DESIGN: A two-round Delphi study was conducted between October 2022 and January 2023. Using the researchers' networks, professionals with research or clinical expertise in self-management support and chronic conditions were recruited via online purposive snowball sampling. Participants were asked to score each item of the checklist (16 items total) on 3 content validity indicators: (1) clarity and comprehensibility, (2) relevance and importance and (3) degree of alignment with the overall goal of the checklist to promote adequate and comprehensive self-management support programmes. A consensus threshold of 75% agreement was used. The participants were also asked general questions about the checklist as a whole and were asked to provide feedback considering its refinement. RESULTS: Fifty-four professionals with an average 14.5 years of experience participated in round 1, 48 with an average 12.5 years of experience participated in round 2. The majority of professionals were from Western Europe. For the majority of items consensus was reached after round 1. In round 2, 3 of the 4 remaining items reached consensus, 1 last item was retained based on highly recurring feedback. CONCLUSIONS: The SMACC checklist was considered a valid and comprehensive tool to aid the development, evaluation and comparison of self-management support programmes. It was acknowledged as a useful instrument to supplement existing frameworks and was seen as feasible to implement in both research and clinical settings. Further validation in the field, with input from patients and peer experts, will be valuable.

Educational programs for learning to observe movement quality in physical therapy: a design-based research approach.

Introduction: Movement observation is a core aspect in physical therapists' diagnosis to determine which interventions are adequate to improve functional abilities. The aim of this study was to derive design principles for an educational program for the development of observational skills.Methods: We used a qualitative approach within a design-based research methodology. In four rounds, 8 physical therapy students, 16 teachers, and 9 practitioners participated in five Nominal Group Technique meetings and six interviews. Meetings and interviews were transcribed verbatim and analyzed using thematic analysis.Results: We identified three themes, each with several design principles: (1) didactics; (2) professional content; and (3) conditions for optimal learning. We developed a proto-theory underpinned with underlying educational theories.Conclusions: To learn observational skills, students, facilitated by an experienced teacher, need to take the lead in their own learning process. This might imply a need for additional training for teachers. A realistic context is a precondition for learning; it might be necessary to increase possibilities for observations in clinical contexts or to invest in training for (simulated) patients as participants in education. Further research is needed to test the applicability of the design principles and a proto-theory for other professionals with a focus on observation and analysis of movements.

Experiences of patients with facioscapulohumeral dystrophy with facial weakness: a qualitative study.

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.Implications for RehabilitationFacial weakness affects both activities and social participation in patients with facioscapulohumeral muscular dystrophy (FSHD), which is reinforced by fatigue.Many participants try to stay down to earth and focus on their ability to self-manage their obstacles regarding facial weakness.Thus, future treatment programs should have a multidisciplinary approach and should point out the importance of the patient's own ingenuity.

Living with myotonic dystrophy; what can be learned from couples? A qualitative study.

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.

Multifaceted interventions are required to improve physical activity behaviour in hospital care: a meta-ethnographic synthesis of qualitative research.

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.

Experienced consequences of spasticity and effects of botulinum toxin injections: a qualitative study amongst patients with disabling spasticity after stroke.

PURPOSE: Chronic spasticity poses a major burden on patients after stroke. Intramuscular botulinum toxin injections constitute an important part of the treatment for patients suffering from troublesome focal spasticity. This study explores the experienced consequences of chronic spasticity amongst patients after stroke regarding physical impairments and activities, the experienced effects of botulinum toxin treatment on these domains, and whether current spasticity management addresses patients' needs. MATERIALS AND METHODS: Fourteen participants with chronic spasticity after stroke who were treated with cyclical botulinum toxin injections in the upper and/or lower extremity muscles were interviewed. Inductive thematic analysis generated representative themes. RESULTS: Analyses of the interviews revealed three themes: (1) spasticity-related impairments and activity limitations; (2) fluctuations in spasticity related to botulinum toxin; (3) need for professional support and feedback. Besides motor impairments, participants experienced activity limitations in many domains of everyday life, with considerable day-to-day fluctuations. Moreover, treatment with botulinum toxin led to cyclical fluctuations in spasticity-related symptoms, which differed across participants. The participants called for shared responsibility for treatment, particularly regarding optimising the timing of injections. CONCLUSION: Incorporating patient-relevant outcomes into the current assessment of spasticity and monitoring these outcomes may improve spasticity management, particularly regarding the timing of botulinum toxin injections.Implications for rehabilitationBecause chronic spasticity after stroke impacts on almost all domains of everyday life, professionals should identify and target the most relevant problems in each individual patient.Monitoring patient-reported outcomes may help patients and professionals to get insight in the fluctuations of spasticity-related symptoms and may help to evaluate the effects of botulinum toxin injections from the patient's perspective.Patient education and providing insight in the fluctuations of spasticity-related symptoms may support self-management and shared decision-making in spasticity management.

Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue.

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. TRIAL REGISTRATION NUMBER: NCT02208687.

Meet and eat, an interdisciplinary group intervention for patients with myotonic dystrophy about healthy nutrition, meal preparation, and consumption: a feasibility study.

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.Implications for rehabilitationPatients with myotonic dystrophy experience physical, cognitive and psychosocial problems to manage healthy nutrition, meal preparation, and consumption;This multidisciplinary group intervention Meet and Eat in patients with myotonic dystrophy appears to be feasible and seems to result in increased insight and management strategies;Peer support, multidisciplinary approach, personal goals, and involvement of family were key factors;To change eating and drinking behavior, a 4-week intervention is too short.