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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. 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. 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. 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. Family 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 skills Different 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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]

Creative leisure occupations, such as arts and crafts, can give rise to meaningfulness. To date, much of what is known about meaningful occupations relates to verbalised meanings. This article assumes a sensory gaze to examine the tangible creative leisure occupations of three women in midlife. A sensory ethnographic approach comprising participant observation, a reflexive ethnography diary, and photo elicitation was augmented by semi-structured interviews, revealing the ways that meaningfulness is felt and sensed in the body through emplaced interactions with nonhuman elements: materials, objects, space and time. The findings provide fresh insights into embodied and emplaced experiences of meaningfulness in occupation in the context of meaningful ageing, illustrating how meaningfulness in occupation goes beyond what can be experienced or expressed in words, spanning both tangible and intangible themes. [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 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. [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]

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. [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]

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. [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]

Objectives Self-management is a concept frequently used within healthcare but lacks consensus. It is the aim of this study to clarify the concept. Design Concept analysis according to Walker and Avant, comprises eight steps: select concept, determine purpose, identify uses, determine defining attributes, identify model case, identify additional cases, identify antecedents and consequences and define empirical referents. Sources used: PubMed, Scopus and Web of Science. Results Ten attributes delineating the concept have been identified and organised into three groups. Group (a): person-oriented attributes: the person must (1) actively take part in the care process, (2) take responsibility for the care process and (3) have a positive way of coping with adversity. Group (b): person-environment-oriented attributes: (4) the person must be informed about the condition, disease and treatment and self-management, (5) should be individualised, which entails expressing needs, values and priorities, (6) requires openness to ensure a reciprocal partnership with healthcare providers and (7) demands openness to social support. Finally, Group (c): summarising attributes: self-management (8) is a lifetime task, (9) assumes personal skills and (10) encompasses the medical, role and emotional management. Conclusions The findings of this study recognise the complexity of the concept, but also show the need for further investigation to make the concept more measurable. Clarity about the concept will enhance understanding and facilitate implementation in selfmanagement programmes for chronic conditions. [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]

Background. Engagement in everyday activities is important for the health and wellbeing of children. Children with mitochondrial disorders have impaired energy production leading to limitations in activity. It is unknown which activities these children perform and if the nature of activities of low-functioning children differs from average-functioning children. Therefore, this pilot study explored the activities reported in patient records of a heterogeneous group of children with genetically confirmed mitochondrial disorders. Methods. A retrospective qualitative directed content analysis by health care professionals reported activities (as part of their professional reasoning obligations) in hospital patient records of children with mitochondrial disorder. Results. Seventeen patient records, presenting notes on capacities and performed activities, showed an overview of everyday activities that covered the categories: self-care, house chores, therapy, school, computing, hobby, play, sports, and mobility/transport. The activity categories of low-functioning children did not differ from average-functioning children, although descriptions of specific activities differed between groups. Conclusion. This pilot exploration indicates that the types of activities that children with mitochondrial disorders perform are not necessarily linked to the child’s impairments. However, differences in levels of independence, assistive device usage, and energy costs seem to exist. Future research should address the child’s perspective on, and meaning of, activity performances. [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]

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. Implications for RehabilitationSelf-management is a dynamic process in which individuals actively manage a chronic condition and finally live a meaningful life with a long-term chronic condition; self-management can be divided into medical, role, and emotional management; comanagement is when individuals activate resources and use the capacities of other persons to manage a situation together.Self-management is situated in everyday activities. Everyday activities give stroke survivors ánd their partners impressions about stroke survivors’ self-management abilities post-stroke in an everyday context.Everyday activities give stroke survivors ánd their partners an arena where role management and a meaningful life are negotiated and coconstructed through doing.Observing stroke survivors in everyday situations provides professionals a concreter picture of stroke survivors’ self-management and comanagement with their partners than can be obtained from an informal interview. [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]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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]

The objective of this study was to produce a valid Danish translation of the Dutch “Occupational therapy guideline for assessment and treatment of apraxia in CVA clients”; to investigate the inter-rater reliability of the assessment instrument in terms of ADL observations; and to determine the content validity of the translation. The inter-rater reliability was investigated using video observations and multiple raters, who also judged the content validity quantitatively. For the scores of the patient's occupational performance the study found moderate to good inter-rater reliability for three of four variables and poor to fair inter-rater reliability for one variable, indicated by intra-class correlation coefficient and Kappa statistic. For the conclusion variables the results demonstrated fair inter-rater reliability for five of six variables and poor inter-rater reliability for one variable, also indicated by Kappa statistic. The content validity was judged valid for 100 and invalid for 28 of the guideline's defined elements. The conclusion, taking the complexity of the ADL observations and the study design into consideration, is that the Danish version can serve as a guideline within Danish occupational therapy practice. However, a translational recheck, further psychometric testing, and a minimum two-day training course is recommended before implementation in practice. [ABSTRACT FROM AUTHOR]

Chronic pain is known as a complex and subjective phenomenon that challenges healthcare professionals who coach and support clients with chronic pain. The aim of this study was to explore how persons with chronic pain experienced their occupational performance. Eight persons suffering from chronic pain were interviewed and the data was analysed with the constant comparative method. Three themes were identified: “Performing is an ongoing attraction”, “Getting used to taking breaks is not easy”, and “The challenge to finish performing”. “Performing is an ongoing attraction” illustrates the innate need of every human being to be active and also how pleasurable occupations do not influence pain. The ongoing thoughts and emotions while participants stop their performance are described in “Getting used to taking breaks is not easy”. This stop and go during every occupation is discussed in the perspective of temporality and occupational performance. In “The challenge to finish performing” the participants describe how they complete certain occupations despite pain. This is discussed with the focus on distraction and flow experience. [ABSTRACT FROM AUTHOR]

This explorative study examined the influence of chronic lower back pain on the motives for occupational performance. A narrative interview was conducted with seven Dutch clients. Three phases in the process of living with lower back pain were identified in which the self, the pain, and the environment were seen as interrelated elements that influence the creation of motives. In the first phase, clients wanted to meet social and personal expectations, which led to their ignoring the lower back pain. In the second phase, the pain took control and the clients withdrew from social participation, which led to "emotional pain." In the third phase, clients became more conscious of the dynamics and dilemmas between the self, the pain, and the environment. Analysis of study results suggests that clients' narratives can help occupational therapists gain a deeper understanding of clients' experiences of dealing with chronic pain. [ABSTRACT FROM AUTHOR]

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]

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. [ABSTRACT FROM AUTHOR]