Ton Satink

Patients' Views on the Impact of Stroke on Their Roles and Self: A Thematic Synthesis of Qualitative Studies

OBJECTIVEnTo synthesize patients views on the impact of stroke on their roles and self.nnnDATA SOURCESnPubMed, 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.nnnSTUDY SELECTIONnQualitative 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.nnnDATA EXTRACTIONnData 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.nnnDATA SYNTHESISnThe 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.nnnCONCLUSIONSnThe 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.

How Persons with a Neuromuscular Disease Perceive Employment Participation : A Qualitative Study

Introduction A qualitative study was carried out to understand how people with a slow progressive adult type neuromuscular disease (NMD) perceive employment participation. Methods 16 paid employed persons with NMD were interviewed in open, in-depth interviews. Data were analyzed using the constant comparison method. Results Four themes were identified in the analyses: (1) Experiences regarding the meaning of work; (2) Solving problems oneself; (3) Reaching a turning point; and (4) Taking into account environmental aspects. Persons with NMD highlighted benefits of staying at work as well as the tension they felt how to shape decisions to handle progressive physical hindrances in job retention. This study shows how participants at work with NMD were challenged to keep up appearances at work and at home, the tension felt around when and if to disclose, the effect of their condition on colleagues and work reorganisation challenges. Participants experienced that disclosure did not always make things better. With increasing disability participants’ focus shifted from the importance of assistive products towards considerate colleague, in particular superior’s willingness in supporting job retention. Conclusions Implications for health professionals might include awareness of the significant impact of changes in physical condition on employment. Timely communication and if appropriate referral to a health or occupational professional may empower employees with NMD to handle employment issues at a for themselves appropriate way. Assistive products and a supportive superior might enhance employment participation.

Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review

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 childs impairments. However, differences in levels of independence, assistive device usage, and energy costs seem to exist. Future research should address the childs perspective on, and meaning of, activity performances.