Tailored interviewing to uncover the perspectives of children with multiple disabilities on daily activities: A qualitative analyses of interview methods and interviewer skills.

INTRODUCTION: Uncovering the perspective of children with multiple disabilities is important in health care to enable person-centred health care. For occupational therapists, uncovering the child perspective on meaningful activities is necessary to set appropriate goals for treatment. It is not always evident that children with multiple disabilities can express themselves in an interview. The interviewer should adapt his communication to the child. In literature, alternative communication is widely studied, but a clear algorithm for deciding what to use to successfully gain insight into the child perspective is missing. This study aims to identify helpful interview techniques and interviewer skills and how they can be used to effectively uncover the perspective of children. METHODS: Videos of nine interviews with children with a mitochondrial disorder, conducted by an occupational therapist, were analysed by five researchers. The interviews were analysed to see how well the interviewee had obtained the child's perspectives followed by observation of communicative abilities of the child and the types of questions the interviewer asked. A qualitative directed content analysis of the semi-structured interviews followed. FINDINGS: An interview pattern was observed in the children's communication leading to six successful interviews. Children communicated verbally on four different levels and also used non-verbal communication. The interviewer used five types of questions, which varied between and within the children. The content analysis resulted in two themes: parental influences and interviewer skills. CONCLUSION: Results show the importance of matching the type of questions to the verbal communication level of the child and revealed several interviewer skills and techniques. An overview to guide tailor-made interviewing is presented. The interviewer has a major role in successful interviewing and thus in enabling the inclusion of the child perspective in research and care.

Guided by joy to live and work with hearing loss.

It was a Monday evening, about 8 years ago, when I entered my weekly yoga class tired and in a hurry. I let out a sigh of relief and wondered myself "why I don't do this every day" ...  . With this thought a seed was planted. It took some time to grow, but now has blossomed successfully. In this narrative I will describe my process of work transition. I am very grateful it succeeded and I found a way to manage work, family and disability and a new balance and fulfillment in life.

What environmental factors influence resumption of valued activities post stroke: a systematic review of qualitative and quantitative findings.

OBJECTIVE: Identify the environmental factors that influence stroke-survivors' reengagement in personally valued activities and determine what specific environmental factors are related to specific valued activity types. DATA SOURCES: PubMed, CINAHL and PsycINFO were searched until June 2016 using multiple search-terms for stroke, activities, disability, and home and community environments. REVIEW METHODS: An integrated mixed-method systematic review of qualitative, quantitative and mixed-design studies was conducted. Two researchers independently identified relevant studies, assessed their methodological quality and extracted relevant findings. To validly compare and combine the various findings, all findings were classified and grouped by environmental category and level of evidence. RESULTS: The search yielded 4024 records; 69 studies were included. Most findings came from low-evidence-level studies such as single qualitative studies. All findings were consistent in that the following factors facilitated reengagement post-stroke: personal adapted equipment; accessible environments; transport; services; education and information. Barriers were: others' negative attitudes and behaviour; long distances and inconvenient environmental conditions (such as bad weather). Each type of valued activity, such as mobility or work, had its own pattern of environmental influences, social support was a facilitator to all types of activities. Although in many qualitative studies others' attitudes, behaviour and stroke-related knowledge were seen as important for reengagement, these factors were hardly studied quantitatively. CONCLUSION: A diversity of environmental factors was related to stroke-survivors' reengagement. Most findings came from low-evidence-level studies so that evidence on causal relationships was scarce. In future, more higher-level-evidence studies, for example on the attitudes of significant others, should be conducted.

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

BACKGROUND: A description of the complexity of the process of self-management and the way stroke survivors give meaning to their process of self-management post-stroke is lacking. This study explores how stroke survivors managed their lives, gave meaning to their self-management post-stroke and how this evolved over time. METHODS: Data was generated through participant observations and interviews of 10 stroke survivors at their homes at 3, 6, 9, 15 and 21 months post-discharge. A constant comparative method was chosen to analyse the data. RESULTS: 'Situated doing' was central in stroke survivors' simultaneous development of self-management and their sense of being in charge of everyday life post-stroke. Doing everyday activities provided the stroke survivors with an arena to explore, experience, evaluate, develop and adapt self-management and being in charge of everyday activities and daily life. The influence of stroke survivors' partners on this development was sometimes experienced as empowering and at other times as constraining. Over time, the meaning of self-management and being in charge changed from the opinion that self-management was doing everything yourself towards self-managing and being in charge, if necessary, with the help of others. Moreover, the sense of self-management and being in charge differed among participants: it ranged from managing only at the level of everyday activities to full role management and experiencing a meaningful and valuable life post-stroke. CONCLUSIONS: The findings of this study indicate the doing of activities as an important arena in which to develop self-management and being in charge post-stroke. Stroke self-management programs could best be delivered in stroke survivors' own environment and focus on not only stroke survivors but also their relatives. Furthermore, the focus of such interventions should be on not only the level of activities but also the existential level of self-management post-stroke.

Role of Environmental Factors on Resuming Valued Activities Poststroke: A Systematic Review of Qualitative and Quantitative Findings.

OBJECTIVE: To investigate how reengagement in valued activities poststroke is influenced by environmental factors. DATA SOURCES: PubMed, CINAHL, and PsycINFO were searched to June 2015 using multiple search terms for stroke, activities, disability, and home and community environments, with the following constraints: English, humans, and adults. STUDY SELECTION: Studies were included that contained data on how reengagement in valued activities of community-dwelling stroke survivors was influenced by the environment. Two reviewers independently selected the studies. The search yielded 3726 records; 39 studies were eventually included. DATA EXTRACTION: Findings were extracted from qualitative, quantitative, and mixed-design studies. Two reviewers independently assessed study quality using the Oxford Critical Appraisal Skills Programme lists and independently extracted results. DATA SYNTHESIS: Thematic analysis was conducted on qualitative data, revealing 9 themes related to the iterative nature of the process of reengagement and the associated environmental factors. During the process of reengagement, environmental factors interact with personal and disease-related factors in a gradual process of shaping or abandoning valued activities. The sociocultural context in this case determines what activities are valued and can be resumed by stroke survivors. Social support; activity opportunities and obligations; familiar and accessible environments; resources and reminders; and a step-by-step return facilitate stroke survivors to explore, adapt, resume, and maintain their activities. Social support is helpful at all stages of the process and particularly is important in case stroke survivors are fearful to explore their activity possibilities. The quantitative data identified largely endorsed these findings. No quantitative data were found in respect to the iterative nature of the process, familiar environments, or accessibility. CONCLUSIONS: Reengagement in valued activities is a gradual process. In each stage of the process, several environmental factors play a role. During rehabilitation, professionals should pay attention to the role physical and social environmental factors have in reengagement poststroke and find ways to optimize stroke survivors' environments.

Negotiating role management through everyday activities: narratives in action of two stroke survivors and their spouses.

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 Rehabilitation Self-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.