RESUMEN

BACKGROUND: People with Huntington's disease (HD) have increased functional and cognitive dependence. While numerous clinical, genetic, and therapeutic management studies have been carried out, few studies have investigated the disease from the personal experience and the context of people living with HD. To better serve these patients, our purpose is to understand, from the perspective of the patient and their families, how people with HD cope with their daily lives outside the clinical setting. METHODS: Thirty-three affected or at-risk people participated in this study. Participants were interviewed at their homes on distinct occasions during a family visit. We analyzed the data using Grounded Theory, which allowed us to understand how people live with the disease on their own terms. RESULTS: Living with HD is a process that begins with acceptance or denial that one is at risk for the disease or, growing awareness of the condition due to motor, behavioral, and cognitive changes, and, finally, loss of autonomy with physical dependence on another person, and loss of sense of self and family. CONCLUSION: While the daily life of patients before disease onset was characterized by physical and mental/cognitive independence, with HD they become increasingly trapped in their bodies, and their complications are due to the lack of effective curable therapy.

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RESUMEN

Discutem-se os fenômenos de imitação neonatal e de imitação recíproca mãe e bebê para a promoção de sintonia em relação ao senso de self em desenvolvimento e à vivência de pertencimento do bebê. Formulam-se vínculos com o conceito psicanalítico de identificação primária, bem como com as teorias psicanalíticas de espelhamento, imitação e identificação introjetiva. Propõe-se que essa imitação evolutiva [developmental imitation] pressupõe o equilíbrio entre a posição do bebê real e a de suposto ocupante interno da mãe. Considera-se que esse equilíbrio forneça o alicerce para a identificação projetiva e a assimilação da experiência, conduzindo ao enriquecimento do senso de identidade. Em contraposição, pode ocorrer a identificação adesiva ou a identificação projetiva na imitação que envolve mimetização. Ilustram-se essas hipóteses com material proveniente de observações de bebê e do tratamento de duas crianças do espectro autístico.

The phenomena of neonatal imitation and of mutual imitation by mother and baby in the service of attunement are discussed in relation to the infant's developing sense of self and experience of belonging. Links are proposed to the psychoanalytic concept of primary identification, as well as to psychoanalytic theories of mirroring, imitation and introjective identification. It is suggested that developmental imitation presupposes a balance between the position of the actual baby and that of the mother's supposed internal occupant. This balance is seen as underlying introjective identification and the assimilation of experience, leading to an enriched sense of identity. In contrast, in the kind of imitation involving mimicry, adhesive or projective identification may be operative. These hypotheses are illustrated with material from infant observation and from the treatment of two children on the autistic spectrum.

Se discuten los fenómenos de imitación neonatal y de imitación recíproca madre y bebé para promover la sintonía en relación al sentido del self en el desarrollo y la vivencia de pertenencia del bebé. Se formulan vínculos con el concepto psicoanalítico de identificación primaria, así como con las teorías psicoanalíticas de reflejo, imitación e identificación introyectiva. Se propone que esta imitación evolutiva [developmental imitation] presupone el equilibrio entre la posición del bebé real y la de supuesto ocupante interno de la madre. Se considera que este equilibrio ofrece la base para la identificación proyectiva y la asimilación de la experiencia, llevando al enriquecimiento del sentido de identidad. En contrapartida, puede ocurrir la identificación adhesiva o la identificación proyectiva en la imitación que involucra la mimetización. Se ilustran estas hipótesis con material proveniente de observaciones de bebé y del tratamiento de dos niños del espectro autístico.