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Due to the rising number of long-term mental health conditions, there has been a shift in therapeutic focus from curing these conditions, to living a meaningful life with them. Self-management is described as the ability to live with the emotional, life role and medical consequences of long-term conditions such as schizophrenia. However, the perspective of people with schizophrenia on self-management in current literature is missing. A lack of understanding of strategies used by people with schizophrenia to self-manage, could adversely affect the use of self-management interventions. Therefore, this study aims to identify how people with schizophrenia manage their daily life. Semi-structured interviews (n = 9) were conducted in a qualitative descriptive design. The study is reported by using the COREQ checklist. All participants, recruited through purposive sampling, have been stabilised after a schizophrenic episode and have been reintegrated into their community. The data were analysed through thematic analysis. Self-management for people with schizophrenia is an individualised process that revolves around performing day-to-day activities according to the participant's wishes. In addition, participants tried to prevent relapse by self-managing daily life. Personal-, social- and schizophrenia-related factors were seen as barriers and/or facilitators in their self-management. These barriers and/or facilitators were self-managed using daily activities. Current self-management interventions for this population often aim at improving medication adherence. Self-management interventions facilitated by health care professionals should (i) focus more on supporting patients in finding their daily structure through meaningful activities and (ii) be mindful of the duality contained within self-management of people with stabilised schizophrenia., (© 2024 John Wiley & Sons Australia, Ltd.)

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.

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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. Facial 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. Because 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. [ABSTRACT FROM AUTHOR]

What are the views of patients, close relatives and healthcare professionals on physical activity behaviour in hospital care? 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. 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). 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. [ABSTRACT FROM AUTHOR]

Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients' needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom. Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed. Results: Four themes were identified which can be reflected by the phrases: (1) 'I stumble', (2) 'I struggle', (3) 'I feel ashamed', and (4) 'I need support'. Balance and gait problems led to limitations in domestic activities, employment, and recreation. 'Stumbling' also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided. Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs. According to patients with hereditary spastic paraplegia, interventions for spasticity should not only be aimed at reducing motor impairments, but also on reducing pain and fatigue, improving nighttime rest and general well-being, and optimizing the performance of relevant personal activities. Medical, role and emotional management in patients with hereditary spastic paraplegia can be improved only when individual needs are identified and monitored over the course of the disease. Besides assessment of bodily functions and physical capacities, systematic evaluation of patient-reported outcomes will help both patients and professionals to monitor the functional impact of disease progression and to evaluate the effects of interventions aimed at retarding this progression. [ABSTRACT FROM AUTHOR]

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. Patients 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. [ABSTRACT FROM AUTHOR]

Objective: The impact of difficulties with eating and drinking in adolescents and young adults with cerebral palsy is unknown. The purpose of this study is to find out which difficulties adolescents and young adults with cerebral palsy experience with eating and drinking in daily life and how they deal with these difficulties. The study also explores how they think about themselves with respect to eating and what does or does not help regarding social participation. Method: We collected the data from ten participants with spastic cerebral palsy (aged 15-23 years) living in the Netherlands. We used a qualitative study design with a conventional content analysis. Semi-structured in-depth interviews were used to identify meaningful factors related to eating and drinking difficulties. We coded relevant phrases from each interview and clustered and synthesized them into categories. Result: We derived four categories from the transcripts: (I) perceived eating and drinking difficulties (e.g., not managing to eat all food textures and/or choking); (II) challenges in physical and social context (e.g., accessibility of restaurants, menu supply, and/or needing assistance or not); (III) dealing with eating and drinking difficulties (e.g., adaptation, food avoidance, and/or giving up); (IV) Negative feelings about their eating and drinking (e.g., shame, frustration, fear for choking, and/or concerns about the future). One striking finding was that most participants had not recently received either monitoring or intervention for their feeding skills. Conclusion: This study shows that adolescents and young adults with cerebral palsy experience many restrictions in eating and drinking situations leading to negative feelings and lower participation levels, while little attention is directed towards these difficulties. Regular multidisciplinary rehabilitation programs should include evaluation, advice, and intervention regarding eating and drinking ability in order to increase social participation and self-management. Adolescents and young adults with cerebral palsy experience difficulties with eating, drinking, and swallowing, and they encounter difficulties in participating in mealtimes with family and friends. Although adolescents and young adults with cerebral palsy rated their eating and drinking abilities as reasonable, they reported feelings of shame, frustration, fear, distress, and concerns for the future or unknown environments. Regular multidisciplinary involvement with eating and drinking is needed for purposes of evaluation, advice, and intervention throughout the life course, adjusted to living conditions and the latest evidence. Adolescents and young adults with cerebral palsy showed limited initiative in asking for personal assistance in eating and drinking activities. [ABSTRACT FROM AUTHOR]

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. Both patients and therapists believe that the ability to self-manage and take control should be the outcome of high quality integrated rehabilitation programmes for patients with neuralgic amyotrophy and/or other brachial plexus injuries. A person-centred, collaborative, and integrated team approach, among all members of the team, are critical components of care delivery in personalised interventions. Critical programme ingredients are knowledge and education of both the patient and therapists; partnership between patient–therapist and within the team; patient activation and self-reflection; and personalised care. Patients recommend more options for personalisation of the intensity and duration of rehabilitation, the possibility to consult a psychologist and peer support within a group setting. [ABSTRACT FROM AUTHOR]

Abstract: In Dutch policy and at the societal level, informal caregivers are ideally seen as essential team members when creating, together with professionals, co‐ordinated support plans for the persons for whom they care. However, collaboration between professionals and informal caregivers is not always effective. This can be explained by the observation that caregivers and professionals have diverse backgrounds and frames of reference regarding providing care. This thematic synthesis sought to examine and understand how professionals experience collaboration with informal caregivers to strengthen the care triad. PubMed, Medline, PsycINFO, Embase, Cochrane/Central and CINAHL were searched systematically until May 2015, using specific key words and inclusion criteria. Twenty‐two articles were used for thematic synthesis. Seven themes revealed different reflections by professionals illustrating the complex, multi‐faceted and dynamic interface of professionals and informal care. Working in collaboration with informal caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the informal caregiver, where the focus now is mainly on the client for whom they care. This is difficult to attain due to different restrictions experienced by professionals on policy and individual levels. Specific guidelines and training for the professionals are necessary in the light of the current policy changes in the Netherlands, where an increased emphasis is placed on informal care structures. [ABSTRACT FROM AUTHOR]

Purpose:This qualitative study explored how stroke survivors’ spouses described their own self-management, their partner’s self-management post-stroke and how they had been supported in developing self-management. Method:Focus group interviews were conducted with 33 spouses of stroke survivors 34–79 years of age. A constant comparative framework was used for the analysis. Result:Stroke also affected the spouses, gave changes in their relationships and challenged in being a caregiver beside being partner. They felt burdened, lonely, sad, and guilty. To manage themselves, many participants created time for themselves. For most spouses, self-management was connoted with co-management because they perceived their partners were not able to manage themselves completely post-stroke. They often felt lost after their partners came home and reported that they learned how to coach their partners post-stroke by trial and error, without much professional support. Moreover, many spouses experienced informal peer support as helpful. Conclusion:Spouses of stroke survivors should be involved as soon as possible in stroke-rehabilitation and continue at home post-discharge. In addition to enhancing the spouses’ skills in caregiving and supporting self-management, stroke survivors’ spouses also need support in their own emotional and role management. Moreover, peers can play a role in rehabilitation post-stroke.Implications for RehabilitationSpouses of stroke survivors should be considered as full participants of stroke-self-management programs to enhance their skills in caregiving and supporting self-management.Stroke survivors’ spouses need support in their own emotional and role management.Peer support can play a role in rehabilitation post-stroke for stroke survivors as well as their spouses. [ABSTRACT FROM PUBLISHER]

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. [ABSTRACT FROM AUTHOR]

Abstract: 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. [Copyright &y& Elsevier]

Introduction. Hand injuries commonly account for a fifth of all emergencies presenting to emergency departments of most hospitals in Europe. One-third of these injuries lead to chronic hand disability that entails economical, psychological, physical and social implications on the wellbeing of hand-injured adults with long-term consequences. However, knowledge about the impact of chronic hand disability on occupations in the long term is limited. Methods. The purpose of this narrative study was to understand how adults after a hand injury experience the impact of chronic hand disability on their occupations over time. Participants were selected through purposive sampling. Two narrative interviews were conducted with each participant and analysed using narrative and structural analysis. Results. All participants experienced the challenge of occupational disruption. They faced occupational limitations with the consequence of changed occupational patterns, and later strived for normality. In the end, all participants still needed to get accustomed to occupational changes. Conclusion. The findings indicate that this process of occupational adaptation continues on for at least one year after the hand injury. They further highlight the importance to support the clients through engagement in occupation during the therapy process. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Highlights • Bariatric surgery is a treatment option for obesity when other tools have failed, also in patients with FSHD and DM1. • We obtained insight into the outcome, effects and risks from a patients perspective. • This improves counseling of patients with FSHD and DM1 who consider bariatric surgery. Abstract 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. [ABSTRACT FROM AUTHOR]