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1.
J Huntingtons Dis ; 10(2): 277-291, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33646170

RESUMEN

BACKGROUND: Psychological difficulties such as anxiety, depression, and irritability are common in Huntington's disease, even for premanifest individuals. However, very little evidence exists of psychological approaches to manage this distress. We have conducted a feasibility study with an embedded qualitative component to investigate the possibility of using mindfulness-based cognitive therapy (MBCT) and present here the findings from the qualitative data. OBJECTIVE: To investigate the experience of premanifest individuals learning and practising mindfulness through completing a course of MBCT. METHODS: Twelve premanifest individuals completed a course of MBCT and attended three follow up reunion meetings over the following year. Eleven participants agreed to be interviewed post-course and ten participants one year post-course about their experience of the course and any impact on their lives. Seven participants nominated a friend or relative (supporter) to be involved in the research, of whom six agreed to be interviewed post-course and two at one year about the impact of the course on the participants. Data were analysed using reflexive thematic analysis. RESULTS: Four themes were constructed from the data: 1) A meeting of minds: the group facilitating learning and support; 2) Mindfulness is hard, but enables more effective emotional management; 3) Mindfulness can change the relationship with self and others; and 4) Benefiting from mindfulness: the importance of persistence. CONCLUSION: The participants who completed the course found it beneficial. Some participants reported reductions in psychological distress, a greater sense of calm and better emotion regulation, with some of these positive changes also noticed by supporters. MBCT is worthy of further investigation for this population.


Asunto(s)
Terapia Cognitivo-Conductual , Enfermedad de Huntington/terapia , Atención Plena , Adulto , Anciano , Ansiedad/terapia , Depresión/terapia , Estudios de Factibilidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Resultado del Tratamiento , Adulto Joven
2.
Artículo en Inglés | MEDLINE | ID: mdl-32595978

RESUMEN

BACKGROUND: Huntington's disease (HD) is an inherited neurodegenerative condition which affects movement, coordination and cognitive functioning. Psychological difficulties are commonly experienced; however, psychological interventions have been little researched with this population. We investigated the feasibility of conducting a randomised controlled trial (RCT) of mindfulness-based cognitive therapy (MBCT) with people with the HD genetic mutation, either pre-manifest (before onset of movement symptoms) or at an early disease stage. Specifically, we evaluated the willingness of participants to be recruited into and complete the intervention; the acceptability of the study measures in relation to completion; the feasibility of offering the standard MBCT course to people with HD; the acceptability of the intervention and the estimated effect sizes. METHODS: Participants were recruited from two UK HD centres and took part in an 8-week course of MBCT, with three reunions throughout the following year. Stress, depression, anxiety, and mindfulness were measured pre-, mid-, and post-course, at 3 months and at 1 year. Sleep, quality of life, positive affect and coping were measured pre- and post-course, at 3 months and at 1 year. Descriptive data and approximate effect sizes were calculated. Interviews were conducted post-course and at 1 year and data pertaining to the acceptability of the course were extracted. RESULTS: Twelve participants took part in two groups; all were pre-manifest. Levels of depression and anxiety were low pre-course leaving little room for improvement. Changes in stress and in some aspects of mindfulness were medium to large. The qualitative data suggested participants rated the course highly and found it helpful and no changes to the standard course were needed. Recruitment levels were below those anticipated. Most measures were found to be acceptable. CONCLUSIONS: Although the course was acceptable to those who took part, given the difficulties in recruiting and the rarity of HD, conducting an RCT of MBCT teaching groups in person does not seem feasible. However, alternative modes of course delivery (e.g. online) would allow the recruitment of people from a greater geographical area and may make an RCT feasible; this revised focus would be suitable for future feasibility studies. TRIAL REGISTRATION: ClinicalTrials.gov identifier NCT02464293, registered 8 June 2015.

3.
Epilepsy Behav ; 111: 107155, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32563053

RESUMEN

BACKGROUND: There is no clear understanding of what causes and maintains nonepileptic attack (NEA) disorder (NEAD), or which psychological therapies may be helpful. The relationships between variables of psychological inflexibility: experiential avoidance (EA), cognitive fusion (CF), mindfulness, and key outcome variables in NEAD: somatization, impact upon life, and NEA frequency were investigated. METHOD: Two hundred eighty-five individuals with NEAD completed validated measures online. Linear regression was used to explore which variables predicted somatization and impact upon life. Ordinal regression was used to explore variables of interest in regard to NEA frequency. RESULTS: Mindfulness, EA, CF, somatization, and impact upon life were all significantly correlated. Mindfulness uniquely predicted somatization when considered in a model with EA and CF. Higher levels of somatization increased the odds of experiencing more NEAs. Individuals who perceived NEAD as having a more significant impact upon their lives had more NEAs, more somatic complaints, and more EA. CONCLUSIONS: Higher levels of CF and EA appear to be related to lower levels of mindfulness. Lower levels of mindfulness predicted greater levels of somatization, and somatization predicted NEA frequency. Interventions that tackle avoidance and increase mindfulness, such as, acceptance and commitment therapy, may be beneficial for individuals with NEAD. Future directions for research are suggested as the results indicate more research is needed.


Asunto(s)
Terapia de Aceptación y Compromiso/métodos , Atención Plena/métodos , Trastornos Psicofisiológicos/terapia , Convulsiones/terapia , Trastornos Somatomorfos/terapia , Humanos , Trastornos Psicofisiológicos/epidemiología , Trastornos Psicofisiológicos/psicología , Convulsiones/epidemiología , Convulsiones/psicología , Trastornos Somatomorfos/epidemiología , Trastornos Somatomorfos/psicología
4.
Psychol Psychother ; 91(2): 216-231, 2018 06.
Artículo en Inglés | MEDLINE | ID: mdl-28972687

RESUMEN

OBJECTIVES: This study sought to investigate how people who had tested positive for the Huntington's disease (HD) gene mutation understood and experienced psychological distress and their expectations of psychological therapy. DESIGN: A qualitative methodology was adopted involving semi-structured interviews and interpretative phenomenological analysis (IPA). METHOD: A total of nine participants (five women and four men) who had opted to engage in psychological therapy were recruited and interviewed prior to the start of this particular psychological therapeutic intervention. Interviews were transcribed verbatim and analysed using IPA whereby themes were analysed within and across transcripts and classified into superordinate themes. RESULTS: Three superordinate themes were developed: Attributing psychological distress to HD: 'you're blaming everything on that now'; Changes in attributions of distress over time: 'in the past you'd just get on with it'; and Approaching therapy with an open mind, commitment, and hope: 'a light at the end of the tunnel'. CONCLUSION: Understandings of psychological distress in HD included biological and psychological explanations, with both often being accepted simultaneously by the same individual but with biomedical accounts generally dominating. Individual experience seemed to reflect a dynamic process whereby people's understanding and experience of their distress changed over time. Psychological therapy was accepted as a positive alternative to medication, providing people with HD with hope that their psychological well-being could be enhanced. PRACTITIONER POINTS: People with the Huntington's disease gene mutation have largely biomedical understandings of their psychological distress. This largely biomedical understanding does not, however, preclude them for being interested in the potential gains resulting from psychological therapy. The mechanisms of psychological therapy should be explained in detail before therapy and explored along with current attributions of distress.


Asunto(s)
Enfermedad de Huntington/genética , Enfermedad de Huntington/psicología , Psicoterapia , Estrés Psicológico/psicología , Adulto , Humanos , Enfermedad de Huntington/terapia , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Estrés Psicológico/terapia , Adulto Joven
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