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1.
Br J Dermatol ; 2024 Oct 15.
Artículo en Inglés | MEDLINE | ID: mdl-39401796

RESUMEN

BACKGROUND: Poor adherence to photoprotection in Xeroderma Pigmentosum (XP) increases morbidity and shortens lifespan due to skin cancers. OBJECTIVE: To test a highly personalised intervention (XPAND) to reduce the dose of ultraviolet radiation (UVR) reaching the face in adults with XP, designed using known psychosocial determinants of poor photoprotection. METHODS: A two-arm parallel group randomised controlled trial, including patients with sub-optimal photoprotection to receive XPAND or a delayed intervention control arm that received XPAND the following year. XPAND comprises seven one-to-one sessions targeting photoprotection barriers (e.g., misconceptions about UVR) supported by personalised text messages, activity sheets, and educational materials incorporating behaviour change techniques. The primary outcome, mean daily UVR dose-to-face across 21 days in June-July 2018, was calculated by combining UVR exposure at the wrist with a face photoprotection activity diary. Secondary outcomes were UVR dose-to-face across 21 days in August 2018, time spent outside, photoprotective measures used outside, mood, automaticity, confidence-to-photoprotect. Financial costs and quality-adjusted life years (QALYs) were calculated. RESULTS: 16 patients were randomised, 13 provided sufficient data for primary outcome analysis. The XPAND group (n=8) had lower mean daily UVR dose-to-face [0.03 SED (SD 0.02] compared to control (n=7) [0.36 SED (SD 0.16)] (adjusted difference=-0.25, p<0.001, Hedge's g=2.2). No significant between-group differences were observed in time spent outside, photoprotection outside, mood, or confidence. The delayed intervention control showed improvements in UVR dose-to-face (adjusted difference=-0.05, Hedge's g=-0.1) , time outside (adjusted difference=-69.9, Hedge's g=-0.28), and photoprotection (adjusted difference=-0.23, Hedge's g=0.45), after receiving XPAND. XPAND was associated with lower treatment costs (£-2642; 95% CI: -£8715 to £3873) and fewer QALYs (-0.0141; 95% CI: -0.0369 to 0.0028). CONCLUSIONS: XPAND was associated with a lower UVR dose-to-face in XP patients and was cost-effective.

2.
J Med Genet ; 59(11): 1095-1103, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35393336

RESUMEN

BACKGROUND: For patients with xeroderma pigmentosum (XP), the main means of preventing skin and eye cancers is extreme protection against ultraviolet radiation (UVR), particularly for the face. We have recently developed a methodology for objectively measuring photoprotection behaviour ('UVR dose to facial skin') and have found that the degree of photoprotection varies greatly between patients with XP. We have previously identified factors affecting photoprotection behaviour in XP using a subjective measure of photoprotection. Here, we have used this objective methodology to identify the factors which determine photoprotection behaviour in XP. METHODS: We studied 29 psychological, social, demographic and clinical variables in 36 patients with XP. We have previously objectively measured UVR protection (by measuring the dose of UVR reaching the skin of the face over a 3-week period) in these patients. Here, we use linear mixed-effects model analysis to identify the factors which lead to the differences in degree of photoprotection observed in these patients. RESULTS: Psychosocial factors accounted for as much of the interindividual variation in photoprotection behaviour (29%) as demographic and clinical factors (24%). Psychosocial factors significantly associated with worse UVR protection included: automaticity of the behaviours, and a group of beliefs and perceptions about XP and photoprotection known to associate with poor treatment adherence in other diseases. CONCLUSIONS: We have identified factors contributing to poor photoprotection in XP. Identifying these potentially reversible psychosocial features has enabled us to design an intervention to improve photoprotection in patients with XP, aiming to prevent skin and eye cancers in these patients.


Asunto(s)
Neoplasias del Ojo , Neoplasias Cutáneas , Xerodermia Pigmentosa , Humanos , Xerodermia Pigmentosa/complicaciones , Xerodermia Pigmentosa/epidemiología , Xerodermia Pigmentosa/genética , Rayos Ultravioleta/efectos adversos , Neoplasias Cutáneas/genética , Cara , Reparación del ADN
3.
Adicciones ; 35(3): 227-234, 2023 Sep 01.
Artículo en Inglés, Español | MEDLINE | ID: mdl-32677689

RESUMEN

Studies of adolescents receiving inpatient substance use treatment remain limited. We explored the characteristics of adolescents who received substance use treatment as inpatients in a psychiatric hospital in Brazil and factors associated with length of time in this treatment. METHODS: A retrospective observational study was performed. Electronic treatment records of 172 young people (aged 17 and below) receiving substance use treatment at Hospital Lacan in Brazil were analysed. RESULTS: The mean age of participants was 15.18 years (SD = 1.39). The sample was characterised as predominately male (68.60%), who entered treatment involuntarily (80.81%), were out of school (89.82%), were involved with the criminal justice system (59.88%) and came from a family with substance use problems (74.67%). Re-admission to inpatient treatment for substance use problems was common. On average, adolescents received inpatient treatment for 3 months. Length of time in treatment was associated with: involuntary admission to treatment, re-admission to inpatient treatment, requests of discharge from treatment by a relative/caretaker, education level, leaving school due to aggressive behaviours and cocaine use. CONCLUSION: Findings highlight the complex profiles of adolescents receiving substance use treatment in Brazil. Cross-system collaboration between mental health, educational and justice services are needed to treat adolescents' substance use.


Los estudios sobre adolescentes ingresados para tratamiento de uso de sustancias son limitados. Analizamos las características de adolescentes ingresados para tratamiento en un hospital psiquiátrico en Brasil y los factores asociados con la duración de su tratamiento. Métodos: estudio observacional retrospectivo. Analizamos los registros electrónicos de tratamiento de 172 jóvenes (hasta los 17 años de edad) ingresados para tratamiento por uso de sustancias en el Hospital Lacan en Brasil. Resultados: La edad media de los participantes era 15,18 años (SD = 1,39). La muestra era mayoritariamente masculina (68,60%), cuyo ingreso fue involuntario (80,81%), sin escolarizar (89,82%), involucrada en el sistema de justicia penal (59,88%) y proveniente de una familia con problemas relacionados con el uso de sustancias (74,67%). La readmisión como paciente a tratamiento por problemas de uso de sustancias era frecuente. Como media, los adolescentes estuvieron ingresados para tratamiento durante 3 meses. La duración del tratamiento estaba asociada con: admisión involuntaria al tratamiento, reingreso hospitalario para tratamiento, solicitudes de alta del tratamiento por parte de familiares/cuidadores, nivel de estudios, abandono escolar debido a conducta agresiva, y uso de cocaína. Conclusión: Los hallazgos destacan los perfiles complejos de los adolescentes ingresados para tratamiento por el uso de sustancias en Brasil. Es necesaria una colaboración entre los sistemas de salud mental, educación y servicios de justicia para tratar el uso de sustancias entre adolescentes.


Asunto(s)
Trastornos Mentales , Trastornos Relacionados con Sustancias , Humanos , Masculino , Adolescente , Pacientes Internos , Hospitalización , Trastornos Relacionados con Sustancias/terapia , Trastornos Relacionados con Sustancias/psicología , Estudios Retrospectivos , Instituciones Académicas , Trastornos Mentales/terapia , Trastornos Mentales/psicología
4.
Photodermatol Photoimmunol Photomed ; 36(2): 118-125, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-31596975

RESUMEN

BACKGROUND/PURPOSE: Adherence to photoprotection is the only way to prevent skin cancers and eye disease in xeroderma pigmentosum (XP). No validated self-report questionnaire exists for assessing adherence to photoprotection practices in individuals with XP. We sought to validate a self-reported measure of adherence to face photoprotection in this population. METHODS: Sixty six XP patients recruited from the patient list of the XP specialist service in London, UK, completed a questionnaire of adherence to specific photoprotection behaviours. We measured objective ultraviolet radiation (UVR) exposure to the face continuously for 21 days with a wristworn UVR electronic dosimeter combined with a daily photoprotection diary. Reliability and convergent validity of the questionnaire were tested in relation to overall UVR exposure, UVR dose to the face, daily photoprotection activities, other self-reported photoprotection practices and clinical ratings of patient's protection. RESULTS: Internal consistency of the questionnaire was satisfactory. Questionnaire total scores were concordant with objective UVR exposure and UVR dose to the face. However, not all participants who reported good/excellent face photoprotection on the questionnaire recorded high levels of photoprotection in the daily diary. Correlations between the questionnaire and other practices and the clinical rating ranged from small to large in size. There was no correlation between the level of face photoprotection and self-reported avoidance of going outside. CONCLUSIONS: Our questionnaire was reliable and had good convergent validity with other indicators of photoprotection. This questionnaire could assist clinicians to detect low levels of adherence, and the methodology used to develop validated questionnaires for other photosensitive conditions.


Asunto(s)
Cara , Autoinforme , Encuestas y Cuestionarios , Xerodermia Pigmentosa/fisiopatología , Adolescente , Adulto , Femenino , Conductas Relacionadas con la Salud , Humanos , Masculino
5.
Adicciones ; 32(4): 265-272, 2020 Nov 17.
Artículo en Inglés, Español | MEDLINE | ID: mdl-32100034

RESUMEN

PURPOSE: The heterogenic characteristics of affected family members (AFMs) of substance misusing relative (SMR) remain understudied. This study examined the occurrence and correlates of AFMs having more than one relative with substance use problems. MATERIAL AND METHODS: A secondary analysis of a cross-sectional study on the characteristics of affected family members in Brazil was performed (N= 3157). Levels of AFM stress, strain, coping and hopefulness were assessed. Factors associated with AFMs having other substance misusing relatives (other-SMRs) were explored using univariate logistic regressions. RESULTS: The occurrence of having other-SMR was reported by 61.6% of the sample (1945/3157). Of this, 47% (904/1945) reported that the other-SMR was a member of the SMR's immediate family (spouse/partner/children/siblings). The likelihood of having other-SMRs was related to the AFM being female, from a low socioeconomic background, between the age of 35-44 years older, being SMR's mother or wife/girlfriend/fiancée, scoring higher on family member impact, psychological and physical symptoms, withdrawal coping and to have an older SMR. CONCLUSION: Information about the characteristics of AFMs is key to understanding how the experience of harm associated with the relative's problem might manifest. Our findings offer information that could be used when developing interventions aimed at reducing the harm experienced by AFMs.


Objetivo: Las características heterogéneas de familiares afectados (FA) de familiares con abuso de sustancias (FAS) han sido objeto de pocos estudios. Este estudio revisó la ocurrencia y los correlatos de FA con uno o más familiares con problemas de abuso de sustancias. Materiales y Métodos: Análisis secundario de un estudio transversal sobre las características de FA en Brasil (N = 3157). Valoramos los niveles de los FA de estrés, presión, afrontamiento y esperanza. Exploramos los factores asociados con los FA que tenían otros familiares con abuso de sustancias (otros-FAS) mediante regresiones logísticas ordinales. Resultados: El 61,6% de la muestra (1945/3157) informó de la ocurrencia de otros-FAS. De estos, el 47% (904/1945) informó que los otros-FAS eran familiares directos del FAS (cónyuge/pareja/hijos/hermanos). La probabilidad de ocurrencia de otros-FAS estaba relacionada con que el FAS fuese mujer, de bajo nivel socioeconómico (NSE), con una edad entre los 35-44 años, fuese la madre o esposa/novia/prometida del FAS, obtuviese una puntuación más alta en impacto familiar, síntomas psicológicos y físicos, evitamiento como mecanismo de afrontamiento, y que tuviese un FAS mayor. Conclusión: Información sobre las características de los FA es clave para entender cómo puede manifestarse la experiencia de daños asociados con el problema del familiar. Nuestros hallazgos aportan datos que pueden ser útiles para desarrollar intervenciones con el objetivo de reducir los daños sufridos por los FA.


Asunto(s)
Adaptación Psicológica , Familia/psicología , Estrés Psicológico/psicología , Trastornos Relacionados con Sustancias , Adulto , Brasil , Estudios Transversales , Relaciones Familiares/psicología , Femenino , Humanos , Modelos Logísticos , Masculino , Apoyo Social , Adulto Joven
6.
Am J Addict ; 26(7): 676-679, 2017 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-28700118

RESUMEN

BACKGROUND AND OBJECTIVES: Retaining substance using women in antenatal care remains a major challenge. This study explored factors associated with attrition rate among women with substance use problems attending a supportive care service during pregnancy and soon after the birth of the infant. METHODS: Records of 166 women's antenatal consultations were analyzed. RESULTS: Attrition rate was high (75/166, 45.2%), and was associated with women having no schooling/primary schooling only, no family contact, having child(ren), crack-cocaine use, poly drug use, and substance use problems by the expected child's father. DISCUSSION AND CONCLUSIONS: Attrition may be the outcome of socio-demographic, family, individual, and substance use issues not fully addressed in prenatal interventions. SCIENTIFIC SIGNIFICANCE: Identification of who are at risk for dropping out affords services with an opportunity to prevent its occurrence. (Am J Addict 2017;26:676-679).


Asunto(s)
Pacientes Desistentes del Tratamiento , Complicaciones del Embarazo , Atención Prenatal , Trastornos Relacionados con Sustancias , Adulto , Brasil/epidemiología , Femenino , Humanos , Evaluación de Necesidades , Pacientes Desistentes del Tratamiento/psicología , Pacientes Desistentes del Tratamiento/estadística & datos numéricos , Embarazo , Complicaciones del Embarazo/diagnóstico , Complicaciones del Embarazo/epidemiología , Complicaciones del Embarazo/psicología , Mujeres Embarazadas/psicología , Atención Prenatal/métodos , Atención Prenatal/organización & administración , Medición de Riesgo , Factores de Riesgo , Apoyo Social , Trastornos Relacionados con Sustancias/diagnóstico , Trastornos Relacionados con Sustancias/epidemiología , Trastornos Relacionados con Sustancias/psicología
7.
J Subst Use Addict Treat ; 147: 208972, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36804348

RESUMEN

BACKGROUND: Mothers compose a significant proportion of women in substance use treatment services. These women have needs that, if not addressed, can negatively impact their capacity to parent. This study explores the feasibility of using free-text notes from electronic health records (EHRs) to identify factors that impair mothers' ability to care for their children. METHOD: This study is a qualitative analysis of EHRs of 50 women attending substance use services in Southeast London who were parents of dependent children (defined as mothers of children aged <18 years independent of living together). We developed a sampling stratification process to ensure an adequate volume of data were available and analyzed per case. The study identified and tested search terms. We extracted data from clinical notes and letters of communication with other services/agencies (free-text notes) using the identified search terms and conducted deductive thematic analysis. RESULTS: The mean number of documents per case was 92.17 (SD = 18.51). The study identified five themes with subthemes: childcare arrangements, family context, safeguarding issues, factors that might impact the treatment plan and care of the child, and communication between the health care and child welfare systems. CONCLUSION: The study demonstrates a novel approach for exploring parenting-related characteristics of mothers in substance use treatment. Despite a range of maternal and childcare-related information available on EHRs, the type of treatment and support being offered to patients in response to the reported information is less well documented. Findings highlight the need for further investments in implementing effective family centered strategies within substance use services.


Asunto(s)
Cuidado del Niño , Trastornos Relacionados con Sustancias , Niño , Humanos , Femenino , Madres , Padres , Investigación Cualitativa , Trastornos Relacionados con Sustancias/terapia
8.
Braz J Psychiatry ; 44(3): 308-311, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35262618

RESUMEN

OBJECTIVE: We explored hospitalization patterns and the clinical and individual characteristics of a large cohort of patients who underwent involuntary psychiatric hospitalization in Brazil (n=64,685). METHODS: Data were collected from the District Attorney's Office of the State of São Paulo (Ministério Público do Estado de São Paulo) on all involuntary psychiatric hospitalizations in the city of São Paulo between January 2003 and February 2020. The annual involuntary psychiatric hospitalization rate was calculated and descriptive statistics of the characteristics were produced. RESULTS: Involuntary psychiatric hospitalizations increased from 5.8 to 25.5 per 100,000 population, with an eight-folder increase in the first 10-year period (2003-2013). The majority of admissions were to public institutions (86.6%), involved a psychotic disorder in the primary diagnosis (26.1%), involved more than one diagnosis (83.7%), and lasted less than 7 days (52.4%). The majority of the patients were aged 18 to 39 years and were single, and readmission was relatively common (13%). Although the reason for admission was missing in many reports (44%), the risk of harm to self or others was the most common (68.5%). CONCLUSION: This is one of the largest cohorts of involuntary psychiatric hospitalization records ever explored. These findings build upon existing international evidence about involuntary psychiatric hospitalizations and show recent trends in admission rates in the largest city in Brazil.


Asunto(s)
Trastornos Mentales , Trastornos Psicóticos , Brasil/epidemiología , Internamiento Obligatorio del Enfermo Mental , Hospitalización , Humanos , Trastornos Mentales/epidemiología , Trastornos Mentales/psicología , Trastornos Mentales/terapia
9.
J Subst Abuse Treat ; 127: 108365, 2021 08.
Artículo en Inglés | MEDLINE | ID: mdl-34134870

RESUMEN

BACKGROUND: Many women receiving substance use treatment services are mothers. Despite this, research has not proved whether substance use treatment services are addressing the specific needs of mothers. This study explored differences in sociodemographic, psychological, patterns of substance use, and treatment characteristics between mothers and women without children, and between mothers whose children were in alternative care. METHOD: The study extracted data from electronic patient records (EPRs) of women who attended South London and Maudsley (SLaM) National Health Services (NHS) Foundation Trust addiction services between 2013 and 2020 (N = 4370). RESULTS: The study identified 1730 participants (39.6%) as mothers, of whom 1340 (77.4%) had dependent children. The average number of births was 1.83 (SD = 1.0). Of the participants, 54.3% of mothers did not disclose whether their dependent child(ren) was under their care and 37.5% of mothers indicated that at least one of their child(ren) was in alternative care. Alcohol was the most reported type of substance used in the past 28 days. Mothers also highly reported suicide attempts and hospitalization due to mental health problems. Compared to women without children, mothers were more likely to be young, experience housing problems, use opioids and/or crack-cocaine in the past 28 days and experience lifetime domestic violence victimizations. Mothers were also less likely to have alcohol-related problems, experience overdose, and social isolation than women without children. CONCLUSION: The study highlights the need for substance use services to invest in approaches to improve mothers' disclosure of parenting and childcare issues. It also demonstrates that EPRs can identify key characteristics of mothers.


Asunto(s)
Registros Electrónicos de Salud , Trastornos Relacionados con Sustancias , Niño , Femenino , Humanos , Londres , Madres , Responsabilidad Parental , Padres , Trastornos Relacionados con Sustancias/epidemiología
10.
Health Psychol Behav Med ; 8(1): 475-500, 2020 Oct 27.
Artículo en Inglés | MEDLINE | ID: mdl-34040882

RESUMEN

Background: Intervention Mapping (IM) is a systematic approach for developing theory-based interventions across a variety of contexts and settings. This paper describes the development of a complex intervention designed to reduce the dose of ultraviolet radiation (UVR) reaching the face of adults with Xeroderma Pigmentosum (XP), by improving photoprotection. XP is a genetic condition that without extreme UVR photoprotection, leads to high risk of developing skin cancer. Methods: The IM protocol of 6 steps was applied, involving comprehensive mixed-methods formative research. Key stakeholders (XP clinical staff and Patient and Public Involvement Panel), were instrumental at every step. Behaviour change methods were informed by the IM taxonomy, therapeutic approaches (e.g. ACT, CBT) and coded according to the taxonomy of behaviour change techniques (version 1). Results: We designed a personalised modular intervention to target psychosocial determinants of photoprotective activities that influence the amount of UVR reaching the face. Content was developed to target determinants of motivation to protect and factors preventing the enactment of behaviours. Participants received personalised content addressing determinants/barriers most relevant to them, as well as core 'behaviour-change' material, considered important for all (e.g. SMART goals). Core and personalised content was delivered via 7 one-to-one sessions with a trained facilitator using a manual and purpose designed materials: Magazine; text messages; sunscreen application video; goal-setting tools (e.g. UVR dial and face protection guide); activity sheets. Novel features included use of ACT-based values to enhance intrinsic motivation, targeting of emotional barriers to photoprotection, addressing appearance concerns and facilitating habit formation. Conclusion: IM was an effective approach for complex intervention design. The structure (e.g. use of matrices) tethered the intervention tightly to theory and evidence-based approaches. The significant amount of time required needs to be considered and may hinder translation of IM into clinical and non-academic settings.

11.
Patient Prefer Adherence ; 13: 1895-1898, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31806938

RESUMEN

OBJECTIVE: One of the challenges in being able to identify and manage medication adherence problems in routine practice is that patients are often reluctant to "admit to" non-adherence, particularly when asked in a direct way. The study reported in this paper has been designed as part of an attempt to address this problem by examining the value of a new brief medicines use screener in helping patients to identify and discuss adherence issues in a clinical setting. METHODS: 145 Patients with type 2 diabetes completed the new screener (MMWFU) together with an adherence self-report scale (MMAS4) and medication beliefs questionnaire (BMQ). Correlations between the scales were assessed together with an assessment of the sensitivity and specificity of the new screener. RESULTS: 126 (88%) of the sample identified at least one medicines-related issue on the MMWFU, which showed strong correlations with the MMAS4 and BMQ Concerns scales, as well as good sensitivity and specificity against the MMAS4. CONCLUSION: The results indicate that the new screener can serve as a fairly sensitive indicator of non-adherence and its determinants. Future studies will be needed to establish how well it performs in other clinical settings.

12.
Br J Health Psychol ; 24(3): 668-686, 2019 09.
Artículo en Inglés | MEDLINE | ID: mdl-31183946

RESUMEN

OBJECTIVES: Xeroderma pigmentosum (XP) is an extremely rare genetic disorder (approximately 100 known cases in the United Kingdom), where DNA damage caused by ultraviolet radiation in daylight cannot be repaired. Adherence to photoprotection is essential to prevent skin cancer. We investigated psychological correlates of photoprotection in the XP population of Western Europe and the United States. DESIGN: Cross-sectional survey of adults with XP and caregivers of patients <16 years and those with cognitive impairment in the United Kingdom, Germany, the United States, and France (n = 156). METHODS: Photoprotection activities to protect the face and body when outdoors; avoidance of going outside during daylight hours; intention; self-efficacy; and social support were assessed using measures developed for this study. Participants answered questions about their illness representations of XP (BIPQ); beliefs about photoprotection (BMQ); automaticity (i.e., without conscious effort) (SRBAI); clinical and demographic characteristics. Ordinal logistic regressions determined factors associated with photoprotection. RESULTS: One third did not achieve optimal face photoprotection. After controlling for demographic and clinical factors, modifiable correlates of higher photoprotection included greater perceived control of XP, stronger beliefs in necessity and effectiveness of photoprotection, and higher intention. Avoidance of going outside was associated with greater photoprotection concerns, more serious illness consequences, and higher XP-related distress. Greater automaticity and higher self-efficacy were associated with better protection across all outcomes. CONCLUSIONS: Approximately half of all known cases across three European countries participated. Identified modifiable predictors of photoprotection may be targeted by interventions to reduce the incidence of skin cancers in the immediate future, when a treatment breakthrough is unlikely. Statement of contribution What is already known on this subject? Adherence to photoprotection in other populations at elevated risk from skin cancer is poor; however, the level in XP is unknown. Research across chronic conditions shows that adherence to treatment and lifestyle recommendations are influenced by illness perceptions, self-efficacy, and treatment beliefs. Studies on photoprotection conducted with the general population have found that perceived risk, perceptions of ultraviolet radiation (UVR) protection, self-efficacy for the behaviour, and automaticity (behaviours that are enacted with little conscious awareness) are related to better photoprotection. What does this study add? This is the first international survey to examine adherence and its correlates in people with XP (an under-researched group at very high risk of fatal skin cancer). Adherence varies and at least one third have potential for improvement. Perceptions about XP, photoprotection beliefs, self-efficacy, intention, and automaticity were associated with photoprotection of the face and body when outdoors. Negative emotional representations of XP were associated with avoidance of going outside during daylight hours.


Asunto(s)
Protección Radiológica , Autoeficacia , Neoplasias Cutáneas , Rayos Ultravioleta , Xerodermia Pigmentosa , Adulto , Estudios Transversales , Europa (Continente) , Femenino , Alemania , Conductas Relacionadas con la Salud , Humanos , Incidencia , Masculino , Enfermedades Raras , Neoplasias Cutáneas/prevención & control , Encuestas y Cuestionarios , Rayos Ultravioleta/efectos adversos , Reino Unido , Xerodermia Pigmentosa/terapia
13.
BMJ Open ; 9(7): e028577, 2019 07 17.
Artículo en Inglés | MEDLINE | ID: mdl-31320353

RESUMEN

INTRODUCTION: Poor adherence to photoprotection for people with xeroderma pigmentosum (XP) can be life-threatening. A randomised controlled trial (RCT) is being conducted to test the efficacy of a personalised adherence intervention (XPAND) to reduce the level of ultraviolet radiation (UVR) reaching the face, by improving photoprotection activities in adults with XP. METHODS AND ANALYSIS: A two-armed parallel groups RCT, where we randomised 24 patients with suboptimal adherence to either an intervention group who received XPAND in 2018 or a delayed intervention group who will receive XPAND in 2019. XPAND involves seven sessions, one-to-one with a facilitator, using behaviour change techniques and specially designed materials to target barriers to photoprotection. Following baseline assessment in April 2018 (t0) and intervention, the primary outcome will be measured across 21 consecutive days in June and July 2018 (t1). The primary outcome is the average daily UVR dose to the face (D-to-F), calculated by combining objective UVR exposure at the wrist (measured by a dosimeter) with face photoprotection activities recorded on a daily UVR protection diary. Secondary outcomes include average daily UVR D-to-F across 21 days in August (t2); psychosocial process variables measured by daily questions (t0, t1, t2) and self-report questionnaires (t0, t1, t2, December 2018 (t3)). Intervention cost-utility is assessed by service use and personal cost questionnaires (t0, t3). The delayed intervention control arm participants will complete three further assessments in April 2019 (t4) and June-July 2019 (t5), and December 2019 (t6) with dosimetry and UVR protection diary completed for 21 days at t4 and t5. A process evaluation will be conducted using mixed methods. ETHICS AND DISSEMINATION: Ethical approval has been received from West London & GTAC REC 17/LO/2110. Results will be disseminated in peer-reviewed journals and at conferences. This study tests a novel intervention, which, if successful, will be integrated into routine care. TRIAL REGISTRATION NUMBER: NCT03445052; Pre-results.


Asunto(s)
Conductas Relacionadas con la Salud , Cooperación del Paciente , Rayos Ultravioleta/efectos adversos , Xerodermia Pigmentosa/terapia , Adulto , Consejo/métodos , Humanos , Ensayos Clínicos Controlados Aleatorios como Asunto , Protectores Solares/uso terapéutico , Encuestas y Cuestionarios , Xerodermia Pigmentosa/psicología
14.
J Psychosom Res ; 115: 110-116, 2018 12.
Artículo en Inglés | MEDLINE | ID: mdl-30470309

RESUMEN

OBJECTIVE: Adherence continues to be a major challenge in healthcare but there is still limited understanding of all the factors which can influence adherence behaviour. The present study was designed to identify a range of factors associated with intentional non-adherence and to see if they could be formed into a psychometrically sound scale. METHODS: Patients in three different clinical groups (Hypertension (N = 175); Oncology (N = 115); Gout (N = 196)) were given the new scale together with an adherence self-report and/or biomarker measure. Other, more established measures of factors known to be associated with adherence (BMQ, PAM, BIPQ), were also completed by patients for comparative and validation purposes. Exploratory Factor Analysis (EFA) was conducted to examine the factor structure of the new scale, and other statistical analyses were used for testing the psychometric properties of the new scale. RESULTS: EFA revealed two factors, which were labelled "Resisting illness" and "Testing treatment". Both scales were found to have good psychometric properties and explained unique variance in adherence in all three clinical groups. CONCLUSION: This new scale shows promise in describing and explaining some relatively novel factors underlying treatment non-adherence. Further work in different patient groups and clinical contexts is needed to confirm the factor structure and predictive value of these scales.


Asunto(s)
Psicometría/métodos , Análisis Factorial , Femenino , Humanos , Masculino , Persona de Mediana Edad , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
15.
J Addict Dis ; 37(3-4): 146-150, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-31328679

RESUMEN

As in many other health disorders, people who misuse substances tend to be assisted by female caregivers. Despite this, little is known about the characteristics of women affected by a substance misusing relative (SMR). Data from 2541 Brazilian female affected family members (AFM) were analyzed. The majority of participants were mothers, age 45 or above, in a relationship, responsible for the substance use treatment of the SMR, and were related to a male SMR. High levels of physical and psychological symptoms were associated with socioeconomic status, mothers, responsibility for the SMR's treatment, cocaine and crack-cocaine as substance of the preference of the SMR, and financial contraints as reasons for the delay to seeking help. Findings demonstrate the complex social systems associated with female AFMs and the need of gender sensitive approaches to address the AFM's coping responses to the substance misuse problem in the family.

16.
Drug Alcohol Rev ; 36(6): 751-760, 2017 11.
Artículo en Inglés | MEDLINE | ID: mdl-28397324

RESUMEN

INTRODUCTION AND AIMS: Evidence suggests that patterns of substance use are changing amongst some members of migrant groups in the UK. This study explored the extent to which residing in the UK has an impact on substance use behaviours amongst Brazilian migrants. DESIGN AND METHODS: A mixed methods approach was adopted comparing Brazilians residing in the UK (n = 164) and Brazilians residing in Brazil (n = 161), age 27.82 (SD = 5.65) average. Participants' socio-demographic characteristics, resilience, personality traits, drinking motives, psychological distress, frequency of alcohol intake, smoking and other drugs used (Brazil and UK), acculturation outcomes and length of residence (UK) were explored. Six in-depth interviews were conducted with Brazilian residents in the UK and analysed using thematic analysis. RESULTS: Participants from the UK reported higher prevalence of substance use; however, significant country differences were only found in binge drinking and poly drug use. While in Brazil, substance use was associated with being male, no religious practices, having resided in another country and higher scores in drinking for social motives and sensation seeking, in the UK it was associated with elementary occupations, higher scores in drinking for social and enhancement motives, threat to cultural identity and lower length of residence in the UK. Interview data suggested that living in the UK was stressful. CONCLUSIONS: Country differences in patterns of substance use were associated with changes resulting from the migratory process to the UK. The stresses associated with the process of acculturation presents a promising path for addressing substance use problems in migrant populations.


Asunto(s)
Aculturación , Trastornos Relacionados con Sustancias/diagnóstico , Trastornos Relacionados con Sustancias/etnología , Migrantes/psicología , Adulto , Brasil/etnología , Estudios Transversales , Femenino , Humanos , Masculino , Trastornos Relacionados con Sustancias/psicología , Reino Unido/etnología
17.
Braz. J. Psychiatry (São Paulo, 1999, Impr.) ; Braz. J. Psychiatry (São Paulo, 1999, Impr.);44(3): 308-311, May-June 2022. tab, graf
Artículo en Inglés | LILACS-Express | LILACS | ID: biblio-1374599

RESUMEN

Objective: We explored hospitalization patterns and the clinical and individual characteristics of a large cohort of patients who underwent involuntary psychiatric hospitalization in Brazil (n=64,685). Methods: Data were collected from the District Attorney's Office of the State of São Paulo (Ministério Público do Estado de São Paulo) on all involuntary psychiatric hospitalizations in the city of São Paulo between January 2003 and February 2020. The annual involuntary psychiatric hospitalization rate was calculated and descriptive statistics of the characteristics were produced. Results: Involuntary psychiatric hospitalizations increased from 5.8 to 25.5 per 100,000 population, with an eight-folder increase in the first 10-year period (2003-2013). The majority of admissions were to public institutions (86.6%), involved a psychotic disorder in the primary diagnosis (26.1%), involved more than one diagnosis (83.7%), and lasted less than 7 days (52.4%). The majority of the patients were aged 18 to 39 years and were single, and readmission was relatively common (13%). Although the reason for admission was missing in many reports (44%), the risk of harm to self or others was the most common (68.5%). Conclusion: This is one of the largest cohorts of involuntary psychiatric hospitalization records ever explored. These findings build upon existing international evidence about involuntary psychiatric hospitalizations and show recent trends in admission rates in the largest city in Brazil.

18.
Child Abuse Negl ; 70: 11-27, 2017 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-28551458

RESUMEN

This article reviews the literature on the factors associated with mothers who use substances losing care of their children. A rapid evidence assessment was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta Analyses. Medline and PsycINFO databases were searched to identify primary research studies published in English during January 2000-September 2016. Studies were included if they presented individual, formal support (e.g., receiving substance use treatment) or informal support (e.g., receiving social and family support) factors associated with mothers who use substances retaining or losing care of their child/ren (losing care refers to child protection services placing child/ren under the custody of a family relative, foster care, child care institution, or adoption). Evaluation studies or trials of interventions were excluded as were studies that focused on reunification or re-entering care as the outcome. Thirteen studies were included. Factors associated with mothers who use substances losing care of their children included: maternal characteristics (low socioeconomic status, younger age of first child, criminal justice involvement); psychological factors (mental health co-morbidity, adverse childhood experiences); patterns of substance use (use of cocaine prenatally, injection drug use); formal and informal support (not receiving treatment for substance use, fewer prenatal care visits, lack of social support). There is not enough evidence to determine the influence of substance use treatment in preventing mothers losing care of their children. Factors identified in this review provide the evidence to inform a prevention agenda and afford services the opportunity to design interventions that meet the needs of those mothers who are more likely to lose care of their children.


Asunto(s)
Adopción , Cuidados en el Hogar de Adopción , Madres , Trastornos Relacionados con Sustancias , Niño , Cuidado del Niño , Femenino , Humanos , Embarazo , Atención Prenatal , Apoyo Social , Trastornos Relacionados con Sustancias/terapia
19.
Drug Alcohol Rev ; 36(1): 52-63, 2017 01.
Artículo en Inglés | MEDLINE | ID: mdl-28134494

RESUMEN

INTRODUCTION AND AIMS: Controlling behaviours are highly prevalent forms of non-physical intimate partner violence (IPV). The prevalence of perpetrating controlling behaviours and technology-facilitated abuse (TFA) was compared by men receiving substance use treatment in England (n = 223) and Brazil (n = 280). Factors associated with perpetrating these behaviours towards their current/most recent partner and their association with other types of IPV were explored. DESIGN AND METHODS: Secondary analysis from two cross-sectional studies was performed. Data on socio-demographic characteristics, infidelity, IPV perpetration and victimisation, adverse childhood experiences (ACE), attitudes towards gender relations and roles, substance use, depressive symptoms and anger expression were collected. RESULTS: Sixty-four percent (143/223) and 33% (73/223) of participants in England and 65% (184/280) and 20% (57/280) in Brazil reported controlling behaviours and TFA, respectively, during their current/most recent relationship. Excluding IPV victimisation from the multivariate models; perpetrating controlling behaviours was associated with a higher number of ACE, higher anger expression (England) and severe physical IPV perpetration (Brazil), and perpetrating TFA was associated with younger age. Including both IPV victimisation and perpetration in the multivariate models; perpetrating controlling behaviour was associated with experiencing a higher number of ACE, higher anger expression (England), emotional IPV victimisation (England) and experiencing controlling behaviour from a partner (England). The perpetration of TFA was associated with younger age and experiencing TFA from a partner. CONCLUSIONS: Technological progress provides opportunities for perpetrators to control and abuse their partners. Controlling behaviours and TFA should be addressed to reduce IPV perpetration by males in substance use treatment. [Gilchrist G, Canfield M,Radcliffe P, d'Oliveira AFPL. Controlling behaviours and technology-facilitated abuse perpetrated by men receiving substance use treatment in England and Brazil: Prevalence and risk factors. Drug Alcohol Rev 2017;36:52-63].


Asunto(s)
Violencia de Pareja/estadística & datos numéricos , Trastornos Relacionados con Sustancias/epidemiología , Tecnología/estadística & datos numéricos , Adulto , Factores de Edad , Ira , Brasil/epidemiología , Víctimas de Crimen/estadística & datos numéricos , Comparación Transcultural , Estudios Transversales , Depresión/epidemiología , Inglaterra/epidemiología , Humanos , Relaciones Interpersonales , Acontecimientos que Cambian la Vida , Masculino , Persona de Mediana Edad , Análisis Multivariante , Prevalencia , Factores de Riesgo , Trastornos Relacionados con Sustancias/rehabilitación
20.
Drug Alcohol Depend ; 147: 276-9, 2015 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-25541243

RESUMEN

BACKGROUND: This study proposes to describe family members in the city of Sao Paulo who are seeking support in mutual self-help groups to deal with a substance misusing relative. METHOD: Five hundred participants (one participant per family) completed a structured questionnaire collecting socio-demographic information, length of time taken to seek help, and where they sought help. Participants were recruited from the mutual self-help group 'Amor Exigente' in the city of Sao Paulo, Brazil. RESULTS: Parents of substance misusers counted as the largest group of family members. It took an average time of 3.7 years for the family members to discover their relatives' substance misuse. 42% had then sought help immediately; it took an average of 2.6 years for the remaining 58% of the sample to seek some form of support. A belief that the substance misuse of their relatives was just a transient problem or that they could cope with the situation by themselves were among the most indicated reasons for delay in seeking help. DISCUSSION: Findings stress the importance of implementing services that take into account the difficulties families have in finding help to deal with the substance misusing relative.


Asunto(s)
Familia/psicología , Accesibilidad a los Servicios de Salud , Apoyo Social , Trastornos Relacionados con Sustancias/psicología , Adaptación Psicológica , Adulto , Brasil , Femenino , Humanos , Masculino , Persona de Mediana Edad , Grupos de Autoayuda , Factores de Tiempo
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