Early intervention for stuttering: similarities and differences between two programs

In this paper, two proponents of different approaches to early stuttering discuss how they would manage a hypothetical case of stuttering in a preschool-age girl. Two evidence-based approaches are discussed: Palin Parent-Child Interaction Therapy and the Lidcombe Program. This paper arose from an oral discussion session held at the International Fluency Association Conference in Tours, France in 2012

"Spontaneous" late recovery from stuttering: Dimensions of reported techniques and causal attributions

Purpose: (1) To survey the employed techniques and the reasons/occasions which adults who had recovered from stuttering after age 11 without previous treatment reported as causal to overcome stuttering, (2) to investigate whether the techniques and causal attributions can be reduced to coherent (inherently consistent) dimensions, and (3) whether these dimensions reflect common therapy components.Methods: 124 recovered persons from 8 countries responded by SurveyMonkey or paper-and-pencil to rating scale questions about 49 possible techniques and 15 causal attributions.Results: A Principal Component Analysis of 110 questionnaires identified 6 components (dimensions) for self-assisted techniques (Speech Restructuring; Relaxed/Monitored Speech; Elocution; Stage Performance; Sought Speech Demands; Reassurance; 63.7% variance explained), and 3 components of perceived causal attributions of recovery (Life Change, Attitude Change, Social Support; 58.0% variance explained).Discussion: Two components for self-assisted techniques (Speech Restructuring; Elocution) reflect treatment methods. Another component (Relaxed/Monitored Speech) consists mainly of items that reflect a common, non-professional understanding of effective management of stuttering. The components of the various perceived reasons for recovery reflect differing implicit theories of causes for recovery from stuttering. These theories are considered susceptible to various biases. This identification of components of reported techniques and of causal attributions is novel compared to previous studies who just list techniques and attributions.Conclusion: The identified dimensions of self-assisted techniques and causal attributions to reduce stuttering as extracted from self-reports of a large, international sample of recovered formerly stuttering adults may guide the application of behavioral stuttering therapies.</p

“Spontaneous” late recovery from stuttering: Dimensions of reported techniques and causal attributions

Purpose: (1) To survey the employed techniques and the reasons/occasions which adults who had recovered from stuttering after age 11 without previous treatment reported as causal to overcome stuttering, (2) to investigate whether the techniques and causal attributions can be reduced to coherent (inherently consistent) dimensions, and (3) whether these dimensions reflect common therapy components. Methods: 124 recovered persons from 8 countries responded by SurveyMonkey or paper-and-pencil to rating scale questions about 49 possible techniques and 15 causal attributions. Results: A Principal Component Analysis of 110 questionnaires identified 6 components (dimensions) for self-assisted techniques (Speech Restructuring; Relaxed/Monitored Speech; Elocution; Stage Performance; Sought Speech Demands; Reassurance; 63.7% variance explained), and 3 components of perceived causal attributions of recovery (Life Change, Attitude Change, Social Support; 58.0% variance explained). Discussion: Two components for self-assisted techniques (Speech Restructuring; Elocution) reflect treatment methods. Another component (Relaxed/Monitored Speech) consists mainly of items that reflect a common, non-professional understanding of effective management of stuttering. The components of the various perceived reasons for recovery reflect differing implicit theories of causes for recovery from stuttering. These theories are considered susceptible to various biases. This identification of components of reported techniques and of causal attributions is novel compared to previous studies who just list techniques and attributions. Conclusion: The identified dimensions of self-assisted techniques and causal attributions to reduce stuttering as extracted from self-reports of a large, international sample of recovered formerly stuttering adults may guide the application of behavioral stuttering therapies

Rare deseases of genetic origin : For a medicine of adaptibility and an ethics of subjectivation

Les maladies rares sont d’identification récente. Elles posent de nombreuses difficultés diagnostiques parce qu'encore mal connues par le corps médical. Elles se présentent parfois par des symptômes que nous avons nommés comme disqualifiants parce que principalement subjectifs et sans manifestation objectivable ou visible par la biologie ou l’imagerie. Notre travail est au carrefour de la philosophie et de la psychologie sociale. Nous avons travaillé à partir du vécu de 16 malades qui ont participé à notre recherche par un entretien semi-dirigé. Les grandes thématiques de leur vécu ont ainsi pu être identifiées : l'expérience pathique de l’éprouvé, les modèles de représentation, les métaphores utilisées pour dire la génétique et la rareté, le lien avec le corps médical et l'expérience sociale des maladies. Pour les personnes atteintes, ces maladie rares ne sont ni des maladies ni des handicaps, mais un entre-deux.Compte tenu que 80 % des maladies rares sont d'origine génétique, nous avons exploré comment cette dimension intervient dans le vécu de la maladie rare. L'imaginaire de la génétique est encore très prégnant, évoquant l'origine causale linéaire de la maladie et tous les espoirs de guérison. Il est souvent associé à une représentation de l'erreur, de la faute ou de la malformation qui est survenue lors de la fécondation. C'est avec toutes ces représentations que les malades vont devoir reconstruire leur vie bouleversée par l'existence de la maladie pour laquelle malheureusement encore le plus souvent il n'existe pas de thérapeutique. Ce parcours nous a conduit à envisager une médecine qui intégrerait une médecine de l'incertitude et reconnaîtrait les limites de la connaissance médicale. À terme, cette médecine devrait pouvoir devenir celle de l’adaptabilité soutenant le travail d'adaptation du malade qui doit trouver le chemin pour continuer d’être un vivant malgré les limites imposées par la maladie. Sur ce chemin parfois très long, la narration, l’échange des savoirs et une importante solidarité entre malades au sein des associations de patients soutiennent les capacités du malade à se reconstruire comme sujet, lui ouvrant la possibilité de vivre son destin comme une destinée.Rare diseases have only recently been identified. They set up quite a lot of diagnostic difficulties because not well-known yet by the medical profession .They sometimes occure by (ou bien with? With symptoms we named as being disqualifying because mainly subjective and without any outbreak possibly objective or evident by biology or medical imaging.Our work is at the crossroad of philosophy and social psychology. Week-end worked on the base of actual experience of 16 sick patients cases who took part in our research through semi-managed talks. So,main themes of their actual current experience could be identified : the pathological of the suffering person, the models of representation,the images used to express the genetics and the rare case, the link with the medical profession and the social experience of the diseases. For the patients concerned,these rare diseases are neither diseases nor handicaps but in-between cases.Taking into account that 80% of rare diseases have a genetique genetic origine origin ,we explored how this theory involves in the way it is lived. The imaginary of genetics still is still very pregnant,calling forth the causal linear origin of the disease and all hopes for recovery .It is often connected to a representation of the error,the fault or the malformation that happened at the time of fecondation. It is with all these representations that patients will have to rebuild their life,upset by the disease against which unfortunately more often most of the time ,no therapy exists yet. This research lead us to view a therapy that would combine a therapy of uncertainty and admit the limits of medical knowledge. In the end, this therapy should be able to become the therapy of an adaptation supporting the adaptability work of the patient who has to find his way to keep being a human person. in spite of the limits compelled by the disease. All along this sometimes very long way, the exchange of knowledge and an amazing solidarity among the patients within the associations back up the patient's capacities to rebuild himself as a subject, giving him the possibility of living his fate as a destiny

Therapeutic education program for patients with hypermobile Ehlers-Danlos syndrome: feasibility and satisfaction of the participants

Objectives: To describe a therapeutic education program for patients with hypermobile Ehlers-Danlos syndrome, called PrEduSED and to evaluate its feasibility and efficiency in terms of satisfaction and impact on disease management in daily life. Methods: Prospective observational study. Evaluation before, after and 6 months after PrEduSED, consisted in: CSQ-F, SF-12, HAD, QIC, FIS, Zarit, Quiz and Vignettes (knowledge and skills about the disease), satisfaction questionnaire, Goal Attainment Scales. Results: Nineteen (19) patients (89% women, mean age: 39.2) were included and 9 relatives (78% men, mean age: 44.1). Participants were generally highly satisfied with the content and the organization of PrEduSED. Knowledge about the EDS and skills significantly improved (p < 0.001 for patients, p = 0.016 for relatives). QIC score improved significantly (p = 0.047) and FIS score also for the relationships domain (p = 0.05). At the end of the program, 69% of participants thought they had achieved their goals (mainly about acquiring knowledge and managing their treatment) beyond what they had hoped for; at 6 months, 54% felt they had achieved them beyond what they hoped for. Conclusions: Real success of PrEduSED for patients with hypermobile EDS in terms of recognition, satisfaction, increase of knowledge about the disease and adaptative skills

Treatment decision making: future directions

status: publishe