RESUMEN
BACKGROUND: We examined demographic, clinical, and psychological characteristics of a large cohort (n = 368) of adults with dissociative seizures (DS) recruited to the CODES randomised controlled trial (RCT) and explored differences associated with age at onset of DS, gender, and DS semiology. METHODS: Prior to randomisation within the CODES RCT, we collected demographic and clinical data on 368 participants. We assessed psychiatric comorbidity using the Mini-International Neuropsychiatric Interview (M.I.N.I.) and a screening measure of personality disorder and measured anxiety, depression, psychological distress, somatic symptom burden, emotional expression, functional impact of DS, avoidance behaviour, and quality of life. We undertook comparisons based on reported age at DS onset (<40 v. ⩾40), gender (male v. female), and DS semiology (predominantly hyperkinetic v. hypokinetic). RESULTS: Our cohort was predominantly female (72%) and characterised by high levels of socio-economic deprivation. Two-thirds had predominantly hyperkinetic DS. Of the total, 69% had ⩾1 comorbid M.I.N.I. diagnosis (median number = 2), with agoraphobia being the most common concurrent diagnosis. Clinical levels of distress were reported by 86% and characteristics associated with maladaptive personality traits by 60%. Moderate-to-severe functional impairment, high levels of somatic symptoms, and impaired quality of life were also reported. Women had a younger age at DS onset than men. CONCLUSIONS: Our study highlights the burden of psychopathology and socio-economic deprivation in a large, heterogeneous cohort of patients with DS. The lack of clear differences based on gender, DS semiology and age at onset suggests these factors do not add substantially to the heterogeneity of the cohort.
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Edad de Inicio , Comorbilidad , Trastornos Disociativos/psicología , Distrés Psicológico , Psicopatología , Convulsiones/psicología , Ansiedad/psicología , Estudios de Cohortes , Femenino , Humanos , Hipercinesia , Masculino , Síntomas sin Explicación Médica , Trastornos de la Personalidad , Pobreza , Escalas de Valoración Psiquiátrica , Calidad de Vida/psicologíaRESUMEN
BACKGROUND: Nested within a large, multicenter randomized controlled trial (RCT) for people with dissociative seizures (DS), the study used purposive sampling to explore participants' experience of participating in an RCT, their experience of DS-specific cognitive behavioral therapy (CBT) and another component of the RCT, Standardized Medical Care (SMC) and their perceptions of and reflections on seizure management and change. METHODS: A qualitative study using semistructured interviews was conducted with 30 participants in an RCT (the COgnitive behavioral therapy vs standardized medical care for adults with Dissociative non-Epileptic Seizures (CODES) Trial) investigating the effectiveness of two treatments for DS. Key themes and subthemes were identified using thematic framework analysis (TFA). RESULTS: Analysis yielded three overarching themes: taking part in a treatment trial - "the only thing out there", the experience of treatment techniques that were perceived to help with seizure management, and reflections on an "unpredictable recovery". CONCLUSIONS: People with DS are amenable to participating in a psychotherapy RCT and described a largely positive experience. They also described the applicability of aspects of DS-specific CBT and SMC in the management of their DS, received within the confines of the CODES trial. Factors that appeared to account for the variability in response to treatment delivery included individual preferences for the nature of sessions, the nature of therapeutic relationships, readiness to discuss trauma, other aspects of emotional avoidance, and whether therapy provided something new.
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Terapia Cognitivo-Conductual , Trastornos Disociativos/psicología , Participación del Paciente/psicología , Percepción , Investigación Cualitativa , Convulsiones/psicología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Terapia Cognitivo-Conductual/métodos , Trastornos Disociativos/diagnóstico , Trastornos Disociativos/terapia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Participación del Paciente/métodos , Convulsiones/diagnóstico , Convulsiones/terapia , Adulto JovenRESUMEN
OBJECTIVES: Little is known about the experiences of therapists delivering psychotherapy for patients with dissociative seizures (DS), a complex disorder associated with a range of comorbid psychosocial and mental health difficulties. This study set out to explore therapists' experiences of delivering DS-specific, manualized cognitive behavioral therapy (CBT) to adults with DS within the context of a randomized control trial. METHODS: Interviews were conducted with 12 therapists involved in the COgnitive behavioral therapy vs standardized medical care for adults with Dissociative non-Epileptic Seizures (CODES) trial and were analyzed using thematic framework analysis (TFA). RESULTS: Six main themes emerged, namely 1) aspects of the intervention that were favored, while others were not always considered applicable; 2) multiple and complex difficulties faced by patients; 3) working effectively within the protocol; 4) limitations of the protocol; 5) significance of formulation; and 6) quality of standardized medical care (SMC) and difficulties of diagnosis delivery. These addressed valued aspects of the intervention, complexities of the patient group, and experiences working within a structured treatment protocol. Family involvement and psychoeducation were highlighted as important components; the applicability of graded exposure techniques, however, was restricted by patients' apparent emotional avoidance. The structure provided by the treatment protocol was valued, but flexibility was important to individualize treatment in complex cases. A comprehensive formulation was fundamental to this. The initial diagnostic explanation provided by neurologists and psychiatrists was generally considered beneficial, with patients often perceived to enter therapy with a better understanding of their condition. CONCLUSIONS: This study demonstrated that the DS-specific CBT intervention met with general approval from therapists who also highlighted some practical challenges. Because of the nature of the condition, the need for experience of working with complex patients should be considered when applying the intervention to individual cases. Setting the CBT intervention in the context of a structured care pathway involving neurology and psychiatry may facilitate the therapeutic process.
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Terapia Cognitivo-Conductual/métodos , Trastornos Disociativos/psicología , Trastornos Disociativos/terapia , Psiquiatría/métodos , Investigación Cualitativa , Convulsiones/psicología , Convulsiones/terapia , Adulto , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
BACKGROUND: Given the long-term health effects of smoking during adolescence and the substantial role that tobacco-related morbidity and mortality play in the global burden of disease, there is a worldwide need to design and implement effective youth-focused smoking prevention interventions. While smoking prevention interventions that focus on both social competence and social influence have been successful in preventing smoking uptake among adolescents in developed countries, their effectiveness in developing countries has not yet been clearly demonstrated. SKY Girls is a multimedia, empowerment and anti-smoking program aimed at 13-16-year old girls in Accra, Ghana. The program uses school and community-based events, a magazine, movies, a radio program, social media and other promotional activities to stimulate normative and behavioral change. METHODS: This study uses pre/post longitudinal data on 2625 girls collected from an interviewer-administered questionnaire. A quasi-experimental matched design was used, incorporating comparison cities with limited or no exposure to SKY Girls (Teshie, Kumasi and Sunyani). Fixed-effects modeling with inverse probability weighting was used to obtain doubly robust estimators and measure the causal influence of SKY Girls on a set of 15 outcome indicators. RESULTS: Results indicate that living and studying in the intervention city was associated with an 11.4 percentage point (pp) (95% CI [2.1, 20.7]) increase in the proportion of girls perceiving support outside their families; an 11.7 pp. decrease (95% CI [- 20.8, - 2.6]) in girls' perception of pressure to smoke cigarettes; a 12.3 pp. increase (95% CI [2.1, 20.7]) in the proportion of girls who had conversations with friends about smoking; an 11.7 pp. increase (95% CI [3.8, 20.8]) in their perceived ability to make choices about what they like and do not like, and 20.3 pp. (95% CI [- 28.4, - 12.2]) and 12.1 pp. (95% CI [- 20.7, - 3.5]) reductions in the proportion agreeing with the idea that peers can justify smoking shisha and cigarettes, respectively. An analysis of the dose-effect associations between exposure to multiple campaign components and desired outcomes was included and discussed. CONCLUSION: The study demonstrates the effectiveness of a multimedia campaign to increase perceived support, empowerment and improve decision-making among adolescent girls in a developing country.
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Multimedia , Fumar , Adolescente , Empoderamiento , Femenino , Ghana , Humanos , Prevención del Hábito de FumarRESUMEN
Objectives: To contribute to improvements in the design and delivery of intervention research in care homes by adopting a collaborative approach that listens to the experiences of care home staff who had participated in a clinical trial aimed at optimising and evaluating a psychosocial intervention package for people with dementia.Methods: Qualitative study involving focus group discussions (FGDs) involving 41 staff across 6 care homes with the UK. Inductive thematic analysis was used to identify themes and interpret the data.Results: Three overarching themes emerged as influential: Recognising preparedness; working together and learning more than expected. The findings highlighted the need to be attentive in addressing staff expectations, the value of sustained relationships and recognition of good practice. The FGDs also identified areas of unanticipated learning that staff and managers adopted.Conclusions: The FGDs showed the importance of considering the overall experience of care home staff who are involved in research and the importance of valuing the skills and experience they hold through positive affirmation. There are often unanticipated consequences of research involvement both on staff practice and on relationships which if promoted could help sustain effective ways of working together.
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Actitud del Personal de Salud , Ensayos Clínicos Controlados Aleatorios como Asunto , Proyectos de Investigación/normas , Instituciones de Cuidados Especializados de Enfermería/organización & administración , Personal de Salud/organización & administración , Personal de Salud/psicología , Humanos , Investigación Cualitativa , Calidad de la Atención de Salud/organización & administraciónRESUMEN
OBJECTIVE: We aimed to characterize the demographics of adults with dissociative (nonepileptic) seizures, placing emphasis on distribution of age at onset, male:female ratio, levels of deprivation, and dissociative seizure semiology. METHODS: We collected demographic and clinical data from 698 adults with dissociative seizures recruited to the screening phase of the CODES (Cognitive Behavioural Therapy vs Standardised Medical Care for Adults With Dissociative Non-Epileptic Seizures) trial from 27 neurology/specialist epilepsy clinics in the UK. We described the cohort in terms of age, age at onset of dissociative seizures, duration of seizure disorder, level of socioeconomic deprivation, and other social and clinical demographic characteristics and their associations. RESULTS: In what is, to date, the largest study of adults with dissociative seizures, the overall modal age at dissociative seizure onset was 19 years; median age at onset was 28 years. Although 74% of the sample was female, importantly the male:female ratio varied with age at onset, with 77% of female but only 59% of male participants developing dissociative seizures by the age of 40 years. The frequency of self-reported previous epilepsy was 27%; nearly half of these epilepsy diagnoses were retrospectively considered erroneous by clinicians. Patients with predominantly hyperkinetic dissociative seizures had a shorter disorder duration prior to diagnosis in this study than patients with hypokinetic seizures (P < .001); dissociative seizure type was not associated with gender. Predominantly hyperkinetic seizures were most commonly seen in patients with symptom onset in their late teens. Thirty percent of the sample reported taking antiepileptic drugs; this was more common in men. More than 50% of the sample lived in areas characterized by the highest levels of deprivation, and more than two-thirds were unemployed. SIGNIFICANCE: Females with dissociative seizures were more common at all ages, whereas the proportion of males increased with age at onset. This disorder was associated with socioeconomic deprivation. Those with hypokinetic dissociative seizures may be at risk for delayed diagnosis and treatment.
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Trastornos Disociativos/diagnóstico , Trastornos Disociativos/epidemiología , Convulsiones/diagnóstico , Convulsiones/epidemiología , Adulto , Estudios de Cohortes , Trastornos Disociativos/fisiopatología , Electroencefalografía/tendencias , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Retrospectivos , Convulsiones/fisiopatología , Reino Unido/epidemiología , Adulto JovenRESUMEN
BACKGROUND: Dementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia. METHODS: We studied family carers of people with dementia and staff working in dementia services iteratively using in-depth individual qualitative interviews and focus groups discussions. Analysis used constant comparison techniques underpinned by a collaborative approach with a study-specific advisory group of family carers. RESULTS: We completed 41 individual interviews with 32 family carers and nine staff and two focus groups with six family carers and five staff. From the analysis, we identified 12 themes that influenced carer QOL. These were organised into three categories focussing on person with dementia, carer, and external environment. CONCLUSIONS: For carers of people with dementia, the QOL construct was found to include condition-specific domains which are not routinely considered in generic assessment of QOL. This has implications for researchers, policy makers, and service providers in addressing and measuring QOL in family carers of people with dementia.
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Cuidadores/psicología , Demencia/psicología , Familia/psicología , Calidad de Vida , Anciano , Anciano de 80 o más Años , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Investigación CualitativaRESUMEN
PURPOSE: We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. METHODS: We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures. RESULTS: C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: 'meeting personal needs' (ω = 0.95); 'carer wellbeing' (ω = 0.91); 'carer-patient relationship' (ω = 0.82); 'confidence in the future' (ω = 0.90) and 'feeling supported' (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. CONCLUSIONS: The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.
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Cuidadores/psicología , Psicometría/métodos , Calidad de Vida/psicología , Adulto , Anciano , Anciano de 80 o más Años , Demencia/psicología , Emociones , Análisis Factorial , Femenino , Grupos Focales , Humanos , Londres , Masculino , Persona de Mediana Edad , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Adulto JovenRESUMEN
In this study, we conducted a unique survey of marine ornamental fishes appearing in UK retail stores, as well as a review of government trade statistics, with the aim to significantly strengthen the evidence-base in support of future management initiatives. Fifty marine aquarium retailers were visited. A total of 380 marine aquarium fish species (4926 individuals), from 48 families were recorded with the largest proportion of individuals belonging to the families Pomacentridae, Acanthuridae, Apogonidae, Labridae, Pomacanthidae, Gobiidae and Labridae. The majority of fishes for sale (91% of species) originated from the Indo-Pacific Ocean, with only a small number (9% of species) derived from the Atlantic Ocean. However, exact sources of individual species were unclear and poorly documented. Government trade statistics revealed that the ornamental reef-fish trade in the UK grew markedly between 1996 and 2008 with a rapid acceleration in 2003-2004. However, imports have declined since 2008 and amounted to less than 305,000 kg in 2017 with an economic value of UK £3 million (c. US $3.8). Recent trade data (2017) identify Indonesia, USA, Philippines and the Maldives as the most important countries in terms of imports to the UK. The UK is an important exporter of wild-caught fishes via trans-shipment, but also production of tank-reared animals. Several species observed for sale in the UK have been designated by the IUCN and CITES as being of conservation concern, although all these animals are thought to have been captive-reared.
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Comercio , Peces , Animales , Océano Atlántico , Conservación de los Recursos Naturales , Explotaciones Pesqueras , Islas del Oceano Índico , Indonesia , Océano Pacífico , Filipinas , Reino UnidoRESUMEN
OBJECTIVES: Visual hallucinations (VHs) can occur in several clinical conditions, of which the dementias, broadly defined, and Parkinson's disease rank among the most common. There is limited research on the lived experience of hallucinations among affected individuals and therefore a lack of evidence-based management strategies. This study used qualitative methods to explore the VH experience of individuals with dementia or Parkinson's disease and their informal caregivers. METHODS: In-depth interviews were conducted with 10 individuals with VHs and dementia and 11 informal caregivers, and 11 individuals with VHs and Parkinson's disease and 9 informal caregivers. Interviews were analysed using an inductive thematic approach. RESULTS: Three themes emerged from the data: "Insight and distress," "Caregiver approach: challenging v reassurance," and "Normality and stigma." Insight appeared to affect whether hallucinations were perceived as threatening and whether acceptance occurred over time. Emotional reactions and management strategies varied as insight changed with disease progression. Concerns around stigmatisation negatively influenced help-seeking and acceptance of the hallucinations. CONCLUSIONS: Degree of insight and cognitive ability appear fundamental to the lived experience of hallucinations. Irrespective of the clinical context, support in early stages should focus on raising awareness of VH, symptom disclosure, stigma reduction, and contact with others affected. In later stages, the focus shifts to informal caregiver needs and a flexible approach to reassuring those affected.
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Cuidadores/psicología , Demencia/complicaciones , Alucinaciones/psicología , Enfermedad de Parkinson/complicaciones , Anciano , Anciano de 80 o más Años , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Investigación Cualitativa , Calidad de Vida , Estereotipo , Estrés Psicológico/etiologíaRESUMEN
PURPOSE: Mental health-related stigma affects people with mental disorders and their families. We aimed to investigate the experience of stigma among relatives of patients with schizophrenia in Belarus and formulate recommendations for anti-stigma interventions. METHODS: We conducted and thematically analysed 20 interviews with relatives of people diagnosed with schizophrenia. Experience of discrimination, strategies to cope with it, and requests for interventions were examined. RESULTS: A number of themes related to the experience of stigma in the public life of relatives of people with schizophrenia were elicited in relation to: (1) mental health care (difficulties in contacting mental health professionals; in getting appropriate information; lack of alternatives to hospital treatment; absence of appropriate long-term care services); (2) employment of people living with schizophrenia and (3) contact with the police. Analysis of the strategies used to overcome difficulties revealed resignation and passive acceptance, self-reliance, and emotional containment during crises. Despite the passivity and scepticism in expressing needs, participants suggested a number of interventions that could reduce the burden of stigma. CONCLUSIONS: With respect to the public domain of life, substantial stigma and discrimination perceived by families of people living with schizophrenia in Belarus is associated with structural issues of the country's mental health care system. To reduce the stigma-related burden, action must be taken to: (1) educate and support families and (2) deal with structural issues, by reorganising mental health services to better meet the needs of the families of people diagnosed with schizophrenia, and by including them in decision making at all levels.
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Familia/etnología , Esquizofrenia/etnología , Estigma Social , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , República de Belarús/etnologíaRESUMEN
INTRODUCTION: Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. METHODS: Searches on terms including "carers," "dementia," "family," and "quality of life" in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes. RESULTS: A total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies (n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer-patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future. DISCUSSION: The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it.
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Cuidadores/psicología , Demencia/enfermería , Calidad de Vida , Demencia/psicología , HumanosRESUMEN
Many people recognise that mass media is important in promoting public health but there have been few attempts to measure how important. An ongoing trial in Burkina Faso (ClinicalTrials.gov, NCT01517230) is an attempt to bring together the very different worlds of mass media and epidemiology: to measure rigorously, using a cluster-randomised design, how many lives mass media can save in a low-income country, and at what cost. Application of the Lives Saved Tool predicts that saturation-based media campaigns could reduce child mortality by 10-20%, at a cost per disability-adjusted life-year that is as low as any existing health intervention. In this Viewpoint we explain the scientific reasoning behind the trial, while stressing the importance of the media methodology used.
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Mortalidad del Niño , Promoción de la Salud/métodos , Medios de Comunicación de Masas , Burkina Faso , Niño , Países en Desarrollo , Costos de la Atención en Salud/estadística & datos numéricos , Promoción de la Salud/economía , Humanos , Años de Vida Ajustados por Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto/métodosRESUMEN
OBJECTIVE: To contribute to an optimised training programme for care staff that supports the implementation of evidence-based psychosocial interventions in long-term care. METHODS: Qualitative study that involved focus group discussions with 119 care home staff within 16 care homes in the UK. Part of wider clinical trial aimed at developing and evaluating an effective and practical psychosocial intervention and implementation approach for people with dementia in long-term care. Inductive thematic analysis was used to identify themes and interpret the data. RESULTS: The findings highlighted that successful training and support interventions must acknowledge and respond to 'whole home' issues. Three overarching themes emerged as influential: the importance of contextual factors such as staff morale, interpersonal relationships within the home, and experience and perceived value of the proposed intervention. CONCLUSIONS: Priority must be given to obtain the commitment of all staff, management and relatives to the training programme and ensure that expectations regarding interaction with residents, participation in activities and the reduction of medication are shared across the care home.
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Actitud del Personal de Salud , Hogares para Ancianos , Cuidados a Largo Plazo/métodos , Casas de Salud , Adulto , Anciano , Cuidadores/psicología , Educación Continua en Enfermería/métodos , Femenino , Grupos Focales , Humanos , Relaciones Interpersonales , Satisfacción en el Trabajo , Masculino , Persona de Mediana Edad , Personal de Enfermería/educación , Proyectos Piloto , Investigación Cualitativa , Apoyo SocialRESUMEN
Only a third of people with mental disorders seek professional help. In this study, we aimed to investigate attitudes toward help-seeking among non-help-seekers drawn from a community survey in South London. We conducted qualitative interviews with 24 participants with symptoms of mental disorders. We analyzed data using thematic analysis. Participants' reasons for not seeking professional help included perceiving their problems as normal or unsuitable for professional help, negative expectations of professional help, believing informal strategies were sufficient, fearing being stigmatized for having a mental disorder and help-seeking, and self-perceptions of being strong and/or self-reliant. A small number (n = 4) had resolved their problems. Participants with unresolved mental disorders (n = 20) had more chronic stressors, particularly about finances and family relationships, and greater concerns about professional help and stigma than other participants. Potential targets for interventions to encourage help-seeking could be focused around stigma about help-seeking as well as the self-perception of being strong.
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Trastornos Mentales , Aceptación de la Atención de Salud , Autoimagen , Estigma Social , Humanos , LondresRESUMEN
We used thematic analysis to investigate factors affecting decision making about gastrostomy and noninvasive ventilation (NIV) by people with Amyotrophic Lateral Sclerosis (ALS) from the viewpoint of the health care professionals (HCPs) supporting them. We conducted 20 in-depth interviews with 19 HCPs nominated by people with ALS who had made a decision to accept or decline NIV or gastrostomy. We found the main themes influencing decision making were patient-centric, caregiver-related or related to HCPs' own beliefs, perspectives, and actions. HCPs felt patients should be, and were, in control of decision making, although caregivers and HCPs played a role. The patient's evaluation of quality of life, the desirability of prolonging life, and acceptance of the disease and its progression by both patient and caregiver were the most important factors identified by HCPs. HCPs should be aware of the importance of multiprofessional discussions, and the potential influences (identified above) that might require discussion with patients and caregivers.
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Esclerosis Amiotrófica Lateral/terapia , Toma de Decisiones , Gastrostomía , Ventilación no Invasiva , Humanos , Calidad de VidaRESUMEN
BACKGROUND: The evidence base for the effectiveness of psychological interventions for patients with dissociative non-epileptic seizures (DS) is currently extremely limited, although data from two small pilot randomised controlled trials (RCTs), including from our group, suggest that Cognitive Behavioural Therapy (CBT) may be effective in reducing DS occurrence and may improve aspects of psychological status and psychosocial functioning. METHODS/DESIGN: The study is a multicentre, pragmatic parallel group RCT to evaluate the clinical and cost-effectiveness of specifically-tailored CBT plus standardised medical care (SMC) vs SMC alone in reducing DS frequency and improving psychological and health-related outcomes. In the initial screening phase, patients with DS will receive their diagnosis from a neurologist/epilepsy specialist. If patients are eligible and interested following the provision of study information and a booklet about DS, they will consent to provide demographic information and fortnightly data about their seizures, and agree to see a psychiatrist three months later. We aim to recruit ~500 patients to this screening stage. After a review three months later by a psychiatrist, those patients who have continued to have DS in the previous eight weeks and who meet further eligibility criteria will be told about the trial comparing CBT + SMC vs SMC alone. If they are interested in participating, they will be given a further booklet on DS and study information. A research worker will see them to obtain their informed consent to take part in the RCT. We aim to randomise 298 people (149 to each arm). In addition to a baseline assessment, data will be collected at 6 and 12 months post randomisation. Our primary outcome is monthly seizure frequency in the preceding month. Secondary outcomes include seizure severity, measures of seizure freedom and reduction, psychological distress and psychosocial functioning, quality of life, health service use, cost effectiveness and adverse events. We will include a nested qualitative study to evaluate participants' views of the intervention and factors that acted as facilitators and barriers to participation. DISCUSSION: This study will be the first adequately powered evaluation of CBT for this patient group and offers the potential to provide an evidence base for treating this patient group. TRIAL REGISTRATION: Current Controlled Trials ISRCTN05681227 ClinicalTrials.gov NCT02325544.
Asunto(s)
Terapia Cognitivo-Conductual/métodos , Trastornos de Conversión/terapia , Trastornos Disociativos/terapia , Convulsiones/terapia , Adulto , Terapia Cognitivo-Conductual/economía , Trastornos de Conversión/complicaciones , Trastornos de Conversión/economía , Trastornos de Conversión/psicología , Análisis Costo-Beneficio , Trastornos Disociativos/complicaciones , Trastornos Disociativos/economía , Trastornos Disociativos/psicología , Servicios de Salud/estadística & datos numéricos , Humanos , Satisfacción del Paciente , Calidad de Vida , Convulsiones/economía , Convulsiones/etiología , Convulsiones/psicología , Resultado del TratamientoRESUMEN
OBJECTIVE: There is great interest in conducting clinical trials of disease-modifying therapies in the prodromal (early, pre-dementia), asymptomatic stages of Alzheimer's disease. Diagnostic biomarker tests offer a means of identifying prodromal patients, but it is unclear how potential participants feel about their use. Deciding whether to take part in a clinical trial is a complex process in which eligible participants must balance risks and discomforts against uncertain benefits. We sought to explore the views of potential participants through qualitative research methods. METHODS: Focus groups with people with early memory problems, current and former family carers explored attitudes towards participating in clinical trials in the prodromal stages of the disease, using an example of anti-amyloid antibody-therapy (immunotherapy), which are currently in development. RESULTS: Despite the complexities involved, almost all participants had a clear idea about whether they, personally, would like to take part. Many were highly motivated to obtain an unambiguous diagnosis, regardless of their desire to participate in a clinical trial. Participants expressed minimal concern regarding the risk of adverse events associated with immunotherapy, whereas certain tests and trial procedures provoked greater anxiety. People with memory problems were found to assess the study demands in relation to their own priorities and circumstances. CONCLUSIONS: The priorities of patients might be different to clinicians and those who design and regulate clinical trials. Patient views can be used to inform the ethical debate around the disclosure of biomarker status, the design of clinical trials and the content of trial information.
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Enfermedad de Alzheimer/terapia , Cuidadores/psicología , Ensayos Clínicos como Asunto/psicología , Disfunción Cognitiva/terapia , Participación del Paciente/psicología , Anciano , Anciano de 80 o más Años , Enfermedad de Alzheimer/psicología , Actitud , Disfunción Cognitiva/psicología , Femenino , Grupos Focales , Humanos , Inmunoterapia , Masculino , Persona de Mediana Edad , Síntomas Prodrómicos , Investigación CualitativaRESUMEN
BACKGROUND: Guidelines and clinical practice focuses on behavioural symptoms of borderline personality disorder, yet other experiences are more persistent and detrimental to psychosocial function. It is unclear how this relates to the experience of individuals with the diagnosis. AIMS: To understand more about phenomenology of borderline personality disorder from the patient's perspective. METHODS: We interviewed nine people with a borderline personality disorder from specialist services in South London, UK. The data were analysed using a phenomenological qualitative method. RESULTS: Individuals experienced frightening perceptual changes that were rationalised in meaningful ways. Participants related their intense experiences to their families, finding them both protective and burdensome. CONCLUSIONS: The results illuminate contradictory behaviours, offering content for clinical interventions. Particularly, this study has provided some novel perspectives about suicidality and interactions with family and friends.
Asunto(s)
Trastorno de Personalidad Limítrofe/psicología , Adolescente , Adulto , Femenino , Humanos , Masculino , Ideación Suicida , Adulto JovenRESUMEN
INTRODUCTION: Mozambique has a high burden of Tuberculosis (TB) with an incidence of 368 per 100,000 population in 2020, coupled with a low all-form TB detection rate. The COVID-19 pandemic has exacerbated delays in timely diagnosis and treatment of new TB cases. Promoting active TB case finding is a national priority in Mozambique. We conducted qualitative research to explore factors influencing TB testing in Zambezia province in Mozambique. MATERIALS AND METHODS: One-to-one, semi-structured, audio-recorded telephone interviews were conducted to explore TB-related knowledge, and barriers and facilitators to TB testing. A sample of two TB Program staff, two community providers of TB services, and 19 community members (10 women and 9 men) was recruited, with support from provincial government TB staff, from four districts in Zambezia with a high TB burden. Interviews were transcribed verbatim, and thematic analysis was conducted. The Mozambican National Bioethics Committee for Health approved the study protocol. RESULTS: Our study highlights that knowledge about TB symptoms and its causes is low, which could delay timely TB testing. Sociocultural beliefs often implicate certain types of sexual activity and women as causes of TB symptoms; for example, having sex with a widow who has not been traditionally purified, or with a woman who has had an abortion. Therefore, people usually tend to first seek care from traditional healers instead of going to a health facility. Additionally, stigma associated with HIV and TB also delays care seeking. Gender-related disparities in TB care seeking were also evident. CONCLUSIONS: This study provides valuable insights into how healthcare seeking for TB is influenced by sociocultural understanding of symptoms and gender dynamics. Therefore, interventions to promote timely and appropriate care seeking for TB should be contextually tailored, culturally appropriate, and gender sensitive.