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1.
J Genet Couns ; 2024 Mar 12.
Artigo em Inglês | MEDLINE | ID: mdl-38469914

RESUMO

Huntington's disease is a genetic neurodegenerative condition with wide physical and psychological impacts. Children of a parent with the condition have a 50% chance of carrying the gene expansion and developing the condition themselves. This systematic review and meta-ethnography presents a synthesis of the qualitative research on the experiences of young people growing up in a family with Huntington's disease. The MEDLINE, PsycINFO, and CINAHL databases were systematically searched, and 13 papers met the inclusion criteria. Through the process of meta-ethnography, four themes were identified highlighting aspects of childhood that were stolen and fought for: thief of relationships, thief of self, thief of transparency, and search for reclamation. Within the themes, the complex challenges young people faced when growing up in a HD family were explored such as the impact of adverse childhood experiences and the possible effects of HD on attachment and social relationships. Clinical implications are considered, and recommendations are made for future research.

2.
Matern Child Health J ; 28(2): 303-314, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37923907

RESUMO

OBJECTIVES: Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2). METHODS: Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012-2014) within 2 weeks of hospital discharge. A repeated measures design was used to assess change on a validated parenting stress inventory over the two timepoints (T1 and T2). Fifty-two parents (61 infants) participated at T1 and 44 (85%) at T2. RESULTS: On discharge (T1) stress was moderately high 3 months post discharge (T2) overall and domain-specific stress scores improved, except stress related to parent role functioning and participation in their child's medical care. Independent predictors of improvement in overall parenting stress scores (T2-T1) were being a younger parent and having experienced prior pregnancy-related loss. CONCLUSIONS FOR PRACTICE: The time of discharge from hospital to home is often stressful for parents of medically fragile infants. Improvements were found during the first 3 months at home, but improvement was minimal for stress related to role function and providing medical care. Past experience with pregnancy-related loss and being younger were associated with improvement in stress across theoretical domains. Screening for stress should be included as part of routine pre- and post-neonatal intensive care unit discharge psychosocial assessments of parents caring for infants with serious illness to ensure their unique support needs continue to be met over time.


What is already known about the topic? Stress in parents of sick infants is well-documented in the post-birth hospitalization period. Early management of parent stress after a child is born with a life-limiting/life-threatening condition is critical in promoting healthy infant attachment and development.What this study adds? Parents of medically fragile infants experience notable stress during the initial months at home. Pre-hospital discharge attention to medical and psychosocial characteristics of infants and parents may help health care teams anticipate post-discharge parenting challenges and facilitate personalized home support strategies aimed at minimizing parent stress and poor parent­child outcomes.


Assuntos
Assistência ao Convalescente , Alta do Paciente , Recém-Nascido , Lactente , Feminino , Gravidez , Humanos , Criança , Pais/psicologia , Unidades de Terapia Intensiva Neonatal , Meio-Oeste dos Estados Unidos , Poder Familiar/psicologia
3.
Aging Ment Health ; 28(1): 151-159, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37811733

RESUMO

OBJECTIVES: Government-enforced lockdown restrictions associated with preventing the spread of the COVID-19 virus had a series of unintended, negative effects. One group of individuals whose physical and mental health was significantly and disproportionately impacted were those with Parkinson's. However, research has been mainly cross-sectional, with no previous study qualitatively following up participants through both lockdowns and the easing of restrictions. Consequently, this study aimed to provide a detailed understanding of the experience of lockdowns and the easing of restrictions on the physical and mental health of people with Parkinson's. METHOD: Data from semi-structured interviews collected at four time points across an 18-month period (May 2020 - September 2021) from the same participants (six men and four women) were analysed using interpretative phenomenological analysis. RESULTS: Three themes were derived: (1) Wrestling with a Parkinson's identity, agency and control during the pandemic; (2) The encroachment and acceleration of a Parkinson's future; and (3) Recalibrating priorities from COVID-19 to Parkinson's. CONCLUSION: As currently the only published study to provide an in-depth longitudinal analysis with this population, we used a more dynamic theoretical account, Strauss and Corbin's theory of illness trajectories, to understand the findings and suggest ways of supporting individuals with Parkinson's in this stage of the pandemic. The scale and breadth of the support needed is a significant challenge for current statutory systems.


Assuntos
COVID-19 , Doença de Parkinson , Masculino , Humanos , Feminino , Doença de Parkinson/psicologia , Estudos Transversais , COVID-19/epidemiologia , Controle de Doenças Transmissíveis , Pesquisa Qualitativa , Inglaterra
4.
BMC Neurol ; 23(1): 178, 2023 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-37138217

RESUMO

BACKGROUND: Receiving the diagnosis of a motor neurodegenerative condition (MNDC) can be a life-changing experience. Although several studies of individuals' experiences have indicated dissatisfaction with aspects of how an MNDC diagnosis was communicated, few studies have addressed doctors' experiences of breaking bad news for these conditions, especially from a qualitative perspective. This study explored UK neurologists' lived experience of delivering an MNDC diagnosis. METHODS: Interpretative phenomenological analysis was used as the overarching method. Eight consultant neurologists working with patients with MNDCs took part in individual, semi-structured interviews. RESULTS: Two themes were constructed from the data: 'Meeting patients' emotional and information needs at diagnosis: a balancing act between disease, patient and organization-related factors', and 'Empathy makes the job harder: the emotional impact and uncovered vulnerabilities associated with breaking bad news'. Breaking the news of an MNDC diagnosis was challenging for participants, both in terms of achieving a patient-centred approach and in terms of dealing with their own emotions during the process. CONCLUSIONS: Based on the study's findings an attempt to explain sub-optimal diagnostic experiences documented in patient studies was made and how organizational changes can support neurologists with this demanding clinical task was discussed.


Assuntos
Doenças Neurodegenerativas , Médicos , Humanos , Neurologistas , Relações Médico-Paciente , Emoções , Doenças Neurodegenerativas/diagnóstico
5.
BMC Emerg Med ; 23(1): 81, 2023 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-37532997

RESUMO

BACKGROUND: Paramedics are increasingly being called to attend patients dying from advanced incurable conditions. However, confidence to deal with such calls varies, with many feeling relatively unskilled in this aspect of their role. A number of interventions have been piloted to improve their skills in end-of-life care (EoLC) but without a fully specified theoretical model. Theory of Change models can provide theoretical and testable links from intervention activities to proposed long-term outcomes and indicate the areas for assessment of effectiveness. This study aimed to develop an intervention for improving paramedic EoLC for patients in the community. METHODS: A Theory of Change approach was used as the overarching theoretical framework for developing an intervention to improve paramedic end-of-life skills. Nine stakeholders - including specialist community paramedics, ambulance call handlers and palliative care specialists - were recruited to five consecutive online workshops, ranging between 60 and 90 min. Each workshop had 2-3 facilitators. Over multiple workshops, stakeholders decided on the desired impact, short- and long-term outcomes, and possible interventions. During and between these workshops a Theory of Change model was created, with the components shared with stakeholders. RESULTS: The stakeholders agreed the desired impact was to provide consistent, holistic, patient-centred, and effective EoLC. Four potential long-term outcomes were suggested: (1) increased use of anticipatory and regular end-of-life medications; (2) reduced end-of-life clinical and medication errors; (3) reduced unnecessary hospitalisations; (4) increased concordance between patient preferred and actual place of death. Key interventions focused on providing immediate information on what to do in such situations including: appraising the situation, developing an algorithm for a treatment plan (including whether or not to convey to hospital) and how to identify ongoing support in the community. CONCLUSIONS: A Theory of Change approach was effective at identifying impact, outcomes, and the important features of an end-of-life intervention for paramedics. This study identified the need for paramedics to have immediate access to information and resources to support EoLC, which the workshop stakeholders are now seeking to develop as an intervention.


Assuntos
Auxiliares de Emergência , Assistência Terminal , Humanos , Paramédico , Assistência Terminal/métodos , Cuidados Paliativos , Morte
6.
Epilepsy Behav ; 126: 108435, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34864376

RESUMO

AIM: To explore the experiences of self-disgust in people with epilepsy and their understandings about this. DESIGN: A qualitative study informed by thematic analysis. METHOD: Ten adults (out of 43 individuals initially interested in taking part, with 38 of those with levels of self-disgust categorised as high) with epilepsy and uncontrolled seizures were recruited online and participated in a telephone semi-structured interview. RESULTS: Three themes illustrated the development and experiences of self-disgust in adults with epilepsy and uncontrolled seizures, and how participants attempted to manage this. The first theme described the development of self-disgust as a result of the physical manifestations of seizures but also the experiences of others' disgust reactions to seizures and an expectation of rejection. The second theme described the enduring and often unescapable experiences of self-disgust, with the final theme illustrating how participants attempted to manage experiences of self-disgust, particularly through avoidance. DISCUSSION: This study was the first to explore qualitatively the experiences of self-disgust in people with epilepsy. People with epilepsy experience disgust in reaction to the physical symptoms of seizures and these disgust-based feelings appeared to become internalized following others' disgust reactions. Avoidance as a strategy to manage self-disgust could be protective but might have inadvertently maintained feelings of self-disgust.


Assuntos
Asco , Epilepsia , Adulto , Emoções , Epilepsia/complicações , Humanos , Pesquisa Qualitativa , Convulsões
7.
BMC Neurol ; 21(1): 34, 2021 Jan 22.
Artigo em Inglês | MEDLINE | ID: mdl-33482753

RESUMO

BACKGROUND: The communication of a life-changing diagnosis can be a difficult task for doctors with potential long-term effects on patient outcomes. Although several studies have addressed the experiences of individuals with motor neurodegenerative diseases in receiving this diagnosis, a significant research gap exists regarding professionals' perspectives, especially in the UK. This study aimed to assess UK neurologists' current practice and perspectives on delivering the diagnosis of a motor neurodegenerative disease, explore different aspects of the process and detail the potential challenges professionals might face. METHODS: We conducted an anonymised online survey with 44 questions, grouped into four sections; basic demographic information, current practice, the experience of breaking bad news and education and training needs. RESULTS: Forty-nine professionals completed the survey. Overall, participants seemed to meet the setting-related standards of good practice; however, they also acknowledged the difficulty of this aspect of their clinical work, with about half of participants (46.5%) reporting moderate levels of stress while breaking bad news. Patients' relatives were not always included in diagnostic consultations and participants were more reluctant to promote a sense of optimism to patients with poorer prognosis. Although professionals reported spending a mean of around 30-40 min for the communication of these diagnoses, a significant proportion of participants (21-39%) reported significantly shorter consultation times, highlighting organisational issues related to lack of capacity. Finally, the majority of participants (75.5%) reported not following any specific guidelines or protocols but indicated their interest in receiving further training in breaking bad news (78.5%). CONCLUSIONS: This was the first UK survey to address neurologists' practice and experiences in communicating these diagnoses. Although meeting basic standards of good practice was reported by most professionals, we identified several areas of improvement. These included spending enough time to deliver the diagnosis appropriately, including patients' relatives as a standard, promoting a sense of hope and responding to professionals' training needs regarding breaking bad news.


Assuntos
Doenças Neurodegenerativas/diagnóstico , Neurologistas , Relações Médico-Paciente , Padrões de Prática Médica , Revelação da Verdade , Comunicação , Humanos , Masculino , Inquéritos e Questionários , Reino Unido
8.
Global Health ; 17(1): 65, 2021 06 24.
Artigo em Inglês | MEDLINE | ID: mdl-34167571

RESUMO

Efficient communication and coordination are needed between countries to prevent, detect and respond to international food safety events. While communication tools, networks and systems exist, current evidence suggests that they are only useful within particular contexts and several only target specific geographic areas. There is a need to unpack and explore the mechanisms of how and in what context such communication tools and their components are effective at facilitating international communication and coordination to keep food safe and mitigate the burden of foodborne disease around the world.A realist synthesis was undertaken to understand how and why certain processes and structures of communication tools, used during international food safety events, influence their utility and effectiveness according to different contextual factors. The focus of this review was explanatory and aimed to develop and refine theory regarding how contextual factors trigger specific processes and mechanisms to produce outcomes. Using the realist context-mechanism-outcome configuration of theory development, a range of sources was used to develop an initial programme theory, including the authors' experience, a scoping review of published papers and grey literature and input from an expert reference committee. Literature was then systematically located and synthesised from several databases with input from the expert reference committee to refine the programme theory.The programme theory developed indicates that when a country has interests in food import or export, has the technical infrastructure to detect and respond to food safety events, and is governed in accordance with regional and/or global laws and regulations relating to food control and global health security, then specific mechanisms will facilitate various outcomes. Mechanisms include trust, experience, support, awareness, understanding, a sense of community, standardisation and intersectoral collaboration. The outcomes include using communication tools to relay information abroad and the prevention of foodborne diseases, among others.Components of such communication tools may be adapted according to different contextual factors to promote, support and improve their use. Improving international coordination and communication during international food safety events is in the interest of global health security and can mitigate the global burden of foodborne disease.


Assuntos
Comunicação , Inocuidade dos Alimentos , Saúde Global , Humanos
9.
COPD ; 18(5): 576-584, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34477040

RESUMO

Hospital admissions are common for people with advanced chronic obstructive pulmonary disease (COPD). To provide effective, responsive care, it is important to understand how people experience hospitalization. The aim of this review was to explore the experience of hospitalization in people with advanced COPD, drawing from qualitative research data. Guided by a thematic synthesis approach, a systematic search of databases (n = 13) including PubMed, CINAHL, PsycINFO and ProQuest was undertaken from database inception to May 2020. Inclusion criteria included papers reporting qualitative research focused on any aspect of hospitalization for people with advanced COPD and reported in English language from peer reviewed journals. Following quality appraisal, relevant data were extracted, and a three-stage thematic synthesis method used to develop inductive themes. From 1935 papers, the 11 included studies focused on specific aspects of hospitalization (e.g., care and treatment), rather than the totality of the experience. Four analytical themes were identified: unpredictable hospitalization, benefits and burdens of treatment, overwhelming distress and the communicative attitude of staff. Hospitalization was unpredictable because of the frequent, sudden admissions required for acute breathlessness. Hospital could be perceived both as a safe place, due to immediate symptom relief, but also as a place for experiencing overwhelming distress. Breathlessness was the most difficult symptom experienced, causing physical and psychological distress. Both communication and attitudes of the staff could influence the experience. A holistic approach to the care of hospitalized individuals with advanced COPD is required to improve care.Supplemental data for this article is available online at https://doi.org/10.1080/15412555.2021.1971186 .


Assuntos
Doença Pulmonar Obstrutiva Crônica , Dispneia , Hospitalização , Humanos , Doença Pulmonar Obstrutiva Crônica/terapia , Pesquisa Qualitativa
10.
J Behav Med ; 43(3): 377-390, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31865486

RESUMO

Disgust-driven stigma may be motivated by an assumption that a stigmatized target presents a disease threat, even in the absence of objective proof. Accordingly, even non-contagious diseases, such as cancer, can become stigmatized by eliciting disgust. This study had two parts: a survey (n = 272), assessing the association between disgust traits and cancer stigma; and an experiment, in which participants were exposed to a cancer surgery (n = 73) or neutral video (n = 68), in order to test a causal mechanism for the abovementioned association. Having a higher proneness to disgust was associated with an increased tendency to stigmatize people with cancer. Further, a significant causal pathway was observed between disgust propensity and awkwardness- and avoidance-based cancer stigma via elevated disgust following cancer surgery exposure. In contrast, those exposed to cancer surgery not experiencing elevated disgust reported less stigma than controls. Exposure-based interventions, which do not elicit disgust, may be profitable in reducing cancer stigma.


Assuntos
Neoplasias/psicologia , Estereotipagem , Adulto , Causalidade , Asco , Emoções , Feminino , Humanos , Masculino , Motivação , Inquéritos e Questionários , Adulto Jovem
11.
Br J Clin Psychol ; 59(2): 260-275, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-32011749

RESUMO

OBJECTIVE: Traumatic events in childhood have been implicated in the development of psychosis, but given that trauma is not in itself sufficient to cause psychosis, researchers have started to investigate other psychological constructs potentially involved in explaining this relationship. Given that self-disgust as a transdiagnostic construct plays a role in the development/maintenance of a range of mental health difficulties, the objective of this study was to investigate whether self-disgust mediates the relationship between childhood trauma and psychosis. METHOD: A cross-sectional quantitative study design was used. Seventy-eight participants (Mage  = 37.64 years, SDage  = 11.57 years; 77% women; 88% White Caucasian) who reported experiencing clinical levels of psychosis were recruited using social media. The participants completed online survey measures of childhood trauma, self-disgust, experiences of psychosis, self-esteem, and external shame. The data were analysed using correlation and mediation analyses. RESULTS: Significant indirect effects of childhood trauma on both positive (ß = .17, BC 95% CI [0.06, 0.30]) and negative symptoms (ß = .26, BC 95% CI [0.14, 0.40]) of psychosis via self-disgust were observed. These effects remained despite the inclusion of self-esteem and external shame as control variables in the mediation models. CONCLUSION: This study is the first to show a mediating role for self-disgust in the relationship between childhood trauma and later psychosis. Although the findings should be considered preliminary until strengthened by further research, they nevertheless provide corroboration of the potential utility of self-disgust as a transdiagnostic construct not only from a theoretical perspective, but also from its potential to inform formulation and interventions. PRACTITIONER POINTS: When assessing individuals with psychosis, especially those with a trauma history explore experiences and feelings related to the construct of self-disgust. Such experiences are likely to centre on feelings of repulsion towards the self/need for distance and might also manifest in the content of their psychotic experiences. Individuals with significant levels or experiences of self-disgust are likely to need specific interventions to address these; while interventions seeking to improve positive aspects of their identity might well be useful, they are unlikely to address the specific maladaptive elements of self-disgust. While self-disgust-focused interventions have not been widely researched, limited current evidence suggests cognitive restructuring and affirmation techniques might be useful.


Assuntos
Experiências Adversas da Infância/tendências , Asco , Emoções/fisiologia , Saúde Mental/tendências , Transtornos Psicóticos/psicologia , Autoimagem , Adolescente , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
12.
Br J Nurs ; 29(6): 346-348, 2020 Mar 26.
Artigo em Inglês | MEDLINE | ID: mdl-32207642

RESUMO

Jane Simpson, Independent Continence Nurse Specialist, The London Clinic, explains why pelvic floor health is important for everyone and provides information that nurses can pass on to patients.


Assuntos
Relações Enfermeiro-Paciente , Educação de Pacientes como Assunto , Diafragma da Pelve/fisiopatologia , Terapia por Exercício/psicologia , Feminino , Humanos , Masculino , Motivação , Incontinência Urinária por Estresse/enfermagem
13.
Curr Opin Pediatr ; 31(4): 462-468, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31045885

RESUMO

PURPOSE OF REVIEW: The current review aims to determine the recent evidence regarding cause, impact, effective treatment and prognosis of children and young people (CYP) affected by chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) at a time when the National Institute for Clinical Excellence guidelines in the United Kingdom are being reviewed and more research is called for worldwide. RECENT FINDINGS: CFS/ME is a debilitating illness with no clear cause. This review describes the heterogeneous clinical picture and the effects on the young person and family. Comorbidities such as mood disorders and pain are discussed including evidence for treatment. The various aetiological hypotheses are discussed and the precipitating factors identified. The evidence base is limited regarding effective treatment for CYP with CFS/ME, particularly the severely affected group. A large trial of online cognitive behavioural therapy with teenagers is being explored in the United Kingdom. The Lightning Process has been shown to be effective when added to medical care. SUMMARY: Current evidence is hampered by different diagnostic criteria, the heterogeneous nature of the condition, and limited number of small studies. There is a clear need for more research and larger studies exploring the cause of and most effective treatment for CYP with CFS/ME.


Assuntos
Terapia Cognitivo-Comportamental , Síndrome de Fadiga Crônica , Adolescente , Criança , Síndrome de Fadiga Crônica/terapia , Humanos , Resultado do Tratamento
14.
Soc Psychiatry Psychiatr Epidemiol ; 54(9): 1023-1044, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31236631

RESUMO

PURPOSE: Higher rates of psychosis have been reported in minority groups. Since individuals belonging to such groups are vulnerable to the experiences of discrimination, and in line with models proposing that social and life adversity may play a causal role in development and maintenance of psychotic experiences, it has been proposed that perceived discrimination may represent an important determinant of psychotic experiences. This paper reviews the literature examining the relationship between perceived discrimination and psychosis, examining whether discrimination is associated with an increased risk of psychosis, the severity of psychotic symptoms and whether there is an association with specific psychotic symptoms. METHODS: A systematic database search of PsycINFO, Embase and PubMed was conducted to identify quantitative cross-sectional and prospective studies that examined the association between discrimination and psychosis. RESULTS: Twenty-four studies met the inclusion criteria, four of which used prospective designs and twenty used cross-sectional designs. The main findings indicated that discrimination may be associated with an increased risk of psychosis (too few studies to determine whether discrimination is associated with severity). Some studies found associations between discrimination and positive psychotic experiences and/or specific psychotic experiences such as paranoia. A small number of studies found that greater exposure to discrimination was associated with a greater likelihood of reporting psychotic experiences, tentatively indicating a dose-response relationship. CONCLUSIONS: This review indicates that discrimination plays an important role in the experience of psychosis; however, future research is required to clarify the nature of this relationship. Avenues for further research and clinical implications are proposed.


Assuntos
Transtornos Psicóticos/psicologia , Discriminação Social/psicologia , Estudos Transversais , Humanos , Grupos Minoritários/psicologia , Transtornos Paranoides/psicologia , Percepção , Estudos Prospectivos
15.
Aging Ment Health ; 23(2): 149-157, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-29105497

RESUMO

OBJECTIVE: Improving end-of-life care for people with neurodegenerative diseases is seen as a clinical priority. In order to do this, it is important to take into account the views expressed by people with these conditions on their experiences of this care. The purpose of this review was to provide a thematic synthesis of the views of adults with neurodegenerative diseases on end-of-life care. METHODS: After a systematic search, 13 articles were included and thematic synthesis was used to collate and interpret findings. RESULTS: Four analytical themes were identified; (1) Importance of autonomy and control; (2) Informed decision-making and the role of healthcare professionals; (3) Contextual factors in decision-making; (4) The pitfalls of care. CONCLUSION: Participants' views were framed by the context of their lives and experience of their illness and these shaped their engagement with end-of-life care. Given the varying disease trajectories, care needs to be individualised and needs-based, implementing palliative care in a timely way to prevent crises and loss of autonomy.


Assuntos
Doenças Neurodegenerativas/psicologia , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Humanos , Pessoa de Meia-Idade
16.
Clin Psychol Psychother ; 26(1): 110-134, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30251455

RESUMO

This systematic literature review examined the clinical utility of the construct of self-disgust in understanding mental distress. Specifically, the review assessed whether there is a shared conceptual definition of self-disgust, the face and construct validity of the quantitative assessment measures of self-disgust, and the predictive validity of self-disgust in formulating the development of a range of psychological difficulties. A systematic database search supplemented by manual searches of references and citations identified 31 relevant papers (27 quantitative, 3 qualitative, and 1 mixed). Analysis of qualitative papers indicated a number of shared features in the definition of self-disgust, including a visceral sense of self-elicited nausea accompanied by social withdrawal and attempts at cleansing or suppressing aspects of the self. Quantitative assessment measures appeared to capture these dimensions and evidenced good psychometric properties, although some measures may have only partially captured the full self-disgust construct. Strong relationships were observed between self-disgust and a range of mental health presentations, in particular, depression, body-image difficulties, and trauma-related difficulties. However, these relationships are smaller when the effects of other negative self-referential emotions were controlled, and stronger conclusions about the predictive validity of self-disgust are limited by the cross-sectional nature of many of the studies.


Assuntos
Asco , Transtornos Mentais/psicologia , Autoimagem , Imagem Corporal/psicologia , Ego , Humanos , Psicometria
17.
Palliat Med ; 32(4): 708-715, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29139332

RESUMO

BACKGROUND: Assisted dying is frequently debated publicly and research often includes the views of health professionals on this issue. However, the views of people with life-limiting conditions, for whom this issue is likely to have a different resonance, are less well represented. AIM: The purpose of this study was to explore the views of people who live with the inevitability of developing Huntington's disease, a genetically transmitted disease which significantly limits life, on assisted dying. DESIGN: Using thematic analysis methodology, individual semi-structured interviews were conducted. SETTING/PARTICIPANTS: Seven participants (five women and two men) who were gene positive for Huntington's disease took part in the study. RESULTS: Four themes were extracted: (1) autonomy and kindness in assisted dying: the importance of moral principles; (2) Huntington's disease threatens life and emphasises issues relating to death; (3) dilemmas in decision-making on assisted dying: "There are no winners" and (4) the absence of explicit discussion on dying and Huntington's disease: "Elephants in the room". CONCLUSIONS: Our findings suggest that talking to patients about assisted death may not cause harm and may even be invited by many patients with Huntington's disease. The perspectives of those who live with Huntington's disease, especially given its extended effects within families, add significant clinical and theoretical insights.


Assuntos
Doença de Huntington , Suicídio Assistido , Adulto , Tomada de Decisões , Feminino , Humanos , Doença de Huntington/genética , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
18.
Neuropsychol Rehabil ; 28(1): 142-183, 2018 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-26935131

RESUMO

Self-esteem is potentially a key factor in psychological and psychosocial well-being following acquired brain injury (ABI). The current review aimed to identify, synthesise and appraise all existing quantitative empirical studies on predictors or correlates of self-esteem following ABI in adulthood. In total, 27 papers met the inclusion criteria. A range of clinical factors were related to self-esteem after ABI, including the degree of physical and functional impairment. It is unclear if cognitive impairment is related to high or low self-esteem. Additionally, psychological variables such as coping styles, adjustment and perception of problems or rehabilitation are related to self-esteem following ABI. Depression is strongly associated with low self-esteem, alongside anxiety, psychological distress and quality of life. Limitations of the available research and recommendations for clinical practice and further research are discussed. In particular, there is a need to engage with contemporary theoretical understandings of self-esteem, integrated with and supported by developments in how self-esteem is conceptualised and measured over time in an ABI population. The findings of the review suggest that self-esteem is an important factor to consider following ABI, particularly in the context of developing individualised, formulation-driven rehabilitation interventions that take into account biological, social and psychological factors.


Assuntos
Lesões Encefálicas/psicologia , Autoimagem , Lesões Encefálicas/reabilitação , Humanos
19.
Neuropsychol Rehabil ; 28(4): 527-547, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-27186650

RESUMO

Social anxiety (SA) following traumatic brain injury (TBI) has the potential to affect an individual's general psychological well-being and social functioning, however little research has explored factors associated with its development. The present study used hierarchical multiple regression to investigate the demographic, clinical and psychological factors associated with SA following TBI. A sample of 85 people who experienced TBI were recruited through social media websites and brain injury services across the North-West of England. The overall combined biopsychosocial model was significant, explaining 52-54.3% of the variance in SA (across five imputations of missing data). The addition of psychological variables (self-esteem, locus of control, self-efficacy) made a significant contribution to the overall model, accounting for an additional 12.2-13% of variance in SA above that explained by demographic and clinical variables. Perceived stigma was the only significant independent predictor of SA (B = .274, p = .005). The findings suggest that psychological variables are important in the development of SA following TBI and must be considered alongside clinical factors. Furthermore, the significant role of stigma highlights the need for intervention at both an individualised and societal level.


Assuntos
Ansiedade/etiologia , Ansiedade/psicologia , Lesões Encefálicas Traumáticas/complicações , Adulto , Idoso , Idoso de 80 Anos ou mais , Lesões Encefálicas Traumáticas/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Análise de Regressão , Autoimagem , Autoeficácia , Estigma Social , Adulto Jovem
20.
Psychother Res ; 28(2): 281-296, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-27471789

RESUMO

OBJECTIVE: This review aimed to synthesize qualitative research exploring clients' perspectives of forming a therapeutic relationship with their therapist or counsellor. METHOD: Noblit and Hare's meta-ethnographic approach was used to guide the synthesis of 13 studies meeting inclusion criteria. The quality of each study was rated using the Critical Appraisal Skills Programme quality rating checklist. RESULTS: Findings demonstrated that clients create a hierarchy of desired therapist characteristics to assess how well the therapy can meet their needs (theme 1: assessing client-therapist match). The formation of the therapeutic relationship is facilitated by an openness from both the therapist and client (theme 2: facilitating openness) and helps to develop a connection through which the client can be fundamentally understood (theme 3: connecting on a deeper level). Displays of disrespectful or disempowering behaviour generate barriers in the formation of a therapeutic relationship (theme 4: empowerment through respect). CONCLUSIONS: The meta-ethnographic approach extended the findings from each individual study to highlight some significant discoveries, including that clients across different settings created a hierarchy of therapist characteristics which were of varying importance to them depending on their perceived needs. Additionally, clients reported that they preferred their therapists to disclose information in order to facilitate the therapeutic relationship.


Assuntos
Poder Psicológico , Psicoterapia/métodos , Aliança Terapêutica , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
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