Ageing and Narration in Huntington’s Disease memoirs (original) (raw)
Related papers
1 Editorial Huntington’s Disease in Popular Culture: A Brief Historical Perspective
2016
Stairs, the narrator suggests a startling sea change in the world of Huntington’s disease (HD). “The news-papers and television and magazines have been full of Huntington’s lately, ” she observes. “Huntington’s has become a fashionable disease, displacing multiple scle-rosis and even schizophrenia in the public’s curiosity.” [1]. She refers, no doubt, to the publicity surrounding the discovery of a genetic marker for HD in 1983 and the beginning of presymptomatic genetic testing three years later [2]. The start of the Human Genome Project in 1990 and the identification of the expanded Hunt-ingtin gene in 1993 drew further attention to HD [3]. Considering that many people get their medical information from popular culture, it is useful to con-sider how HD has been portrayed on television and also in novels such as House of Stairs [4]. Why did the dis-ease suddenly start to appear at this time when it was largely absent before? What aspects were emphasized? How accurate were fictional...
2013
Center for Culture and Health. The cases used here are discussed in Carole H. Browner and H. Mabel Preloran's monograph, Neurogenetic Diagnoses: The power of hope and the limits of today's medicine (Routledge, 2010). These cases are also discussed in Devin Flaherty, H. Mabel Preloran and Carole Browner's chapter "Is It 'Disclosure'? Rethinking Tellings of Genetic Diagnoses" in Disclosure and Identity in Health and Illness (working title), Mark D.M. Davis and Lenore Manderson, eds. (Routledge, in press). A much earlier version of this paper was presented at the Disclosing subjects: bodies, selves intimacies, politics symposium,
Beyond the clinical context: the process of losing oneself living with Huntington’s disease
Orphanet Journal of Rare Diseases
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, ...
P02.276 The impact of huntington's disease on caregivers: The czech experience
European Psychiatry, 2000
Evaluar los principales problemas en los cuales los cuidadores (CG) de pacientes con enfermedad de Huntington (HD) se ven enfrentados, desde los estadios tempranos de la enfermedad. Diseño: 21 CGs (4 esposas, 8 esposos, 7 hijas, 1 madre y 1 hijo) fueron investigados en base a una entrevista estructurada con el uso de un cuestionario. Las áreas a evaluar fueron: A. Problemas en obtener información acerca de los estadios iniciales de la enfermedad. B. Problemas con el diagnóstico de la enfermedad. C. Comunicación con el médico. D. Manifestaciones clínicas que afectan a los CGs. E. Información acerca de grupos de apoyo así como la utilidad de éstos. Resultados: 14/21 CGs tuvieron problemas severos en la obtención de información, 7/21 tuvieron información suficiente. El riesgo del desarrollo de HD en sus hijos fue el principal problema relacionado con el diagnóstico de la enfermedad. La comunicación con el médico tratante fue reportada como problemática en 15/21 CGs, mientras que en 6/21 la experiencia fue buena. Cambios afectivos y del comportamiento fueron reportados como los síntomas más severos de HD para 12/21 CGs (agresión en 12/21, depresión en 7/21 y problemas sexuales en 3/21), síntomas de demencia en 10/21, disartria en 7/21, movimientos involuntarios y/o desórdenes de la marcha en 3/21 CGs. La información acerca de la existencia de grupos de apoyo para HD entre médicos y programas de salud fue insuficiente para 16/21 CGs. La utilidad de los grupos de apoyo fue extremadamente importante para todos los CGs. Conclusiones: Médicos y personal de salud deberían aceptar la idea de que los CG, aparentemente en buena condición física y de salud, necesitan tanto ayuda psicológica como médica.
Experiences of Teens Living in the Shadow of Huntington Disease
Journal of Genetic Counseling, 2008
Research on families with Huntington Disease (HD) has primarily focused on adult decision-making surrounding predictive genetic testing and caregiver stress. Little is known about the experiences of teens living in these families. This qualitative study explored the experiences of 32 teens living in families with HD. Six focus groups were conducted across the U.S. and Canada. Data were analyzed using descriptive qualitative analysis. HD appeared to cast a shadow over the experiences described by teens. Four themes were identified: Watching and waiting; Alone in the midst of others; Family life is kind of hard; and Having to be like an adult. These experiences highlight the need for genetic counselors, health care providers, and school personnel to be aware of issues facing teens living in families with HD. Recognizing patterns of teen experiences may help health care providers develop strategies to support coping by teens in HD families.
Role of older generations in the family’s adjustment to Huntington disease
Journal of Community Genetics, 2021
Genetic diseases are a family matter, requiring adjustment and management from the family system, particularly when the diagnosis is recent. Literature has evidenced the importance of the role of older relatives in families dealing with some genetic diseases; however, knowledge is scarce regarding rare incurable genetic disorders, such as Huntington disease. Therefore, this exploratory qualitative study aims at describing how adjustment to Huntington disease occurs, from a family perspective, considering the roles performed by older generations, in the Portuguese context. It adopts the critical incidents technique, administered based on semi-structured interviews, and comprises 10 participants, aged 28 to 72 years (8 females), from seven families. Participants reported 130 critical incidents. The interviews were audiotaped, transcribed, and submitted to thematic analysis. Findings portray participants and their families as "beginners" in understanding and incorporating Huntington disease in their lives, due to recent diagnosis. In addition, data suggest that older relatives play two relevant roles in the creation of family narratives: (1) "shaping awareness about HD" (68 critical incidents) and (2) "influencing HD management" (62 critical incidents). Genetic counseling and family-centered interventions aimed at supporting families with a history of hereditary genetic diseases, should consider a narrative approach involving older relatives, since they have a great influence in sustaining family stories.
Couples' illness representation and coping procedures in prodromal Huntington disease
Huntington disease (HD) is a degenerative neurological disease that leads to severe impairment in cognitive, behavioral, and motor function and premature death. Persons who test positive for the HD gene expansion know they will develop the disease, typically in mid life. Research indicates changes are detectable several years before onset of distinctive motor symptoms. The period of time between a positive test result and diagnosis has thus been called prodromal HD (prHD). Little is known whether persons with prHD or their companions notice changes, or how they cope with them. The purpose of this thesis was to use the Common Sense Model to explore and describe illness representations in persons with prHD and their companions in three papers. The first paper was a preliminary analysis of interview data from eight persons with prHD and seven companions. Results indicated participants noticed and made attributions for changes in work function but were unsure whether some changes were related to HD. Results were preliminary because participants were not asked to make attributions and the sample size was small. In the next two papers, 23 couples were interviewed. The purpose of the second paper was to explore illness representations in persons with prHD and their companions and evaluate the usefulness of the CSM in anticipated illness. Results supported preliminary findings: Participants noticed changes and made attributions; again, most did not attribute them to HD. Participants also used and evaluated coping strategies. Other elements of the CSM were partially supported. The third paper used mixed methods to explore coping in persons with prHD and companions. Participants were asked open-ended questions about how they coped with changes and were verbally administered the Brief COPE scale. Participants used active coping, acceptance, planning, and social support and rarely used denial or substance abuse. Persons with prHD used more coping strategies than companions. Three major To the brave and generous people from families affected by Huntington disease who are willing to participate in research iii ACKNOWLDGEMENTS This research project was supported in part by a grant awarded to Dr. Jane Paulsen by NINDS NS40068 and CHDI, Inc. There is no financial relationship with either of these organizations. In addition, The University of Iowa College of Nursing Parent, Child, Family Area provided support for participant compensation through its indirect cost recovery funds. Anne Leserman, MSW, LISW, Huntington Disease Center Coordinator with the PREDICT-HD study, provided valuable assistance in identifying potential participants for this study and shared her expertise on this population.