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BACKGROUND: Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementia prevalence. AIM: To identify factors influencing where people with advanced dementia die. DESIGN AND DATA SOURCES: This systematic review with meta-analysis was registered on PROSPERO (CRD42022366722). Medline, CINAHL, PsycINFO, SocINDEX and a grey literature database, Overton, were searched on 21/12/2022, supplemented by hand-searching/citation tracking. Papers reporting quantitative data on factors associated with place of death in advanced dementia were included and appraised using QualSyst. Data were analysed using random effects with the certainty of evidence determined using the GRADE criteria. RESULTS: Thirty-three papers involving >5 million individuals (mean age = 89.2 years) were included. Long-term care setting deaths were relatively common but hospice deaths were rarer. Marriage's association with home death underscores social networks' importance, while younger age's and male gender's associations with hospital death demonstrate patients' and families' interdependency. Pneumonia/COPD's opposing effects on hospital deaths with cancer/functional impairment highlight the challenges of advanced dementia care. Unlike hospital/nursing home bed availability's lack of effect, capitated funding (fixed-amount-per-patient-per-period) decreased hospital death likelihood. CONCLUSION: This comprehensive review of place of death determinants highlight the profound challenges of advanced dementia end-of-life care. Given that bed capacity did not affect place of death, a capitation-based, integrated palliative care model would appear more likely to meet patients' needs in a resource-constrained environment.
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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.
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PURPOSE: Perceived control is an important construct for the psychological well-being of people affected by chronic conditions, and higher perceived control is associated with better outcomes. Psychosocial interventions have been trialled in these populations to improve both global and specific perceptions of control. However, most interventions involving people with Parkinson's have focused on single-domain forms of control, while those addressing global perceived control are yet to be reviewed. This study aimed to identify and map the types of psychosocial interventions in individuals with Parkinson's which have included forms of global perceived control as an outcome. MATERIALS AND METHODS: Scoping review based on a search across MEDLINE, PsycINFO, CINAHL, Academic Search Ultimate. RESULTS: From an initial return of 4388 citations, 12 citations were eventually included. These consisted of 8 quantitative and 4 qualitative studies, and covered 4 overarching categories of psychosocial interventions. Mixed results were found for cognitive, educational, and physical interventions, while a randomised controlled trial on mindfulness-based lifestyle programme showed more preliminary positive evidence. CONCLUSIONS: Further rigorous research is required on the topic to build on these preliminary findings. In the meantime, clinicians may need to consider programmes which proved effective with populations similar to people with Parkinson's.IMPLICATIONS FOR REHABILITATIONPerceived control is a psychological construct important for people with chronic illnesses, which can be targeted by psychosocial interventions.This article reviewed psychosocial interventions targeting global forms of perceived control in Parkinson's.Mixed results were reported for the cognitive, educational, and physical interventions identified, while a randomised controlled trial on a mindfulness-based lifestyle programme showed more promising evidence.In the meantime, clinicians may need to consider programmes found to be effective with people with similar conditions to Parkinson's.
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Enfermedad de Parkinson , Humanos , Enfermedad de Parkinson/psicología , Intervención Psicosocial , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
PURPOSE: Medication adherence is a multi-faceted construct associated with several positive consequences in people with chronic conditions. However, non-adherence currently represents a major issue in Parkinson's, potentially due to low perceptions of control. This study investigated the predictive ability of several aspects of perceived control on adherence in people with Parkinson's, while accounting for previously established predictors such as depression and medication variables. MATERIALS AND METHODS: An online cross-sectional survey was carried out with 1210 adults with Parkinson's from 15 English-speaking countries. Demographic and clinical questions, as well as measures of depression, aspects of perceived control, and medication adherence were included. Pearson's correlations and a 4-block hierarchical regression analysis were performed to assess the relationship between the variables. RESULTS: Perceived control explained a slightly higher amount of variance in medication adherence compared to medication variables when entered in the last block. Unexpectedly, depression was not significantly related with adherence. Internal locus of control was an independent negative predictor of adherence, while external dimensions of locus of control emerged as independent positive predictors. CONCLUSIONS: In people with Parkinson's, perceptions of control may have a larger impact on adherence compared to medication variables. Implications for clinical practice and future research are discussed.Implications for RehabilitationPerceived control and depression are considered important constructs for medication adherence in Parkinson's, which in turn is often problematic for affected individuals.The specific predictive value of different aspects of perceived control on medication adherence in Parkinson's is currently unclear.This large-scale study found that perceptions of control may have a larger impact on adherence compared to medication variables, while depression was unrelated to it.A need for psychologically-informed interventions, person-centred approaches to medication management, and Parkinson-specific measures of adherence are highlighted.
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Enfermedad de Parkinson , Adulto , Humanos , Enfermedad de Parkinson/tratamiento farmacológico , Enfermedad de Parkinson/complicaciones , Estudios Transversales , Cumplimiento de la Medicación , Enfermedad CrónicaRESUMEN
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.
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Cuidados Posteriores , Alta del Paciente , Recién Nacido , Lactante , Femenino , Embarazo , Humanos , Niño , Padres/psicología , Unidades de Cuidado Intensivo Neonatal , Medio Oeste de Estados Unidos , Responsabilidad Parental/psicologíaRESUMEN
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.
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COVID-19 , Enfermedad de Parkinson , Masculino , Humanos , Femenino , Enfermedad de Parkinson/psicología , Estudios Transversales , COVID-19/epidemiología , Control de Enfermedades Transmisibles , Investigación Cualitativa , InglaterraRESUMEN
BACKGROUND: Huntington's disease (HD) is an adult-onset genetic neurodegenerative condition associated with cognitive decline, motor impairments, and emotional difficulties. Anxiety affects up to 71% of HD gene expansion carriers (i.e., those with the version of the gene that causes HD) and can negatively impact quality of life, worsen other HD symptoms, and increase suicide risk. Therefore, helping people with their anxiety should be a clinical priority. A significant evidence base now exists for low-cost talking therapies for anxiety, such as guided self-help, and with people with other neurodegenerative conditions (e.g., Parkinson's disease). However, this type of intervention has not been specifically assessed with HD gene expansion carriers. METHODS: This protocol describes an exploratory randomised controlled feasibility study of a psychological intervention for anxiety for HD gene expansion carriers. The 10 session guided self-help intervention ('GUIDE-HD') is based on a blend of second and third wave cognitive behavioural models of anxiety (cognitive behaviour therapy [CBT] and acceptance and commitment therapy [ACT]) and is adapted to meet the specific needs of an HD population. This study will compare guided self-help with treatment as usual (TAU), with 15 HD gene expansion carriers randomly allocated to each group. Participants will be recruited across the UK. Quantitative data will be collected pre-intervention, immediately post-intervention, 3-month post-intervention and 6-month post-intervention. Qualitative data will be collected at one month post-intervention from participants, including HD carers. The data will be analysed to assess whether the current intervention and study design are feasible to progress to a larger randomised controlled trial. Feasibility has been defined in terms of recruitment rate, retention rate to both trial arms, intervention adherence, and acceptability of the intervention and measurement tools. DISCUSSION: Given the lack of evidenced interventions to date to support the wellbeing of people with the expanded Huntington's gene, this study will assess the feasibility of progressing this particular intervention to a full trial. To try and increase the acceptability of the intervention, a number of stakeholders, including those affected by HD and in caring roles, have been fundamental to the creation of the intervention (e.g., therapy manual, planned therapy process) to date. TRIAL REGISTRATION: Trial ID: ISRCTN47330596 . Date registered: 28/09/2022. Protocol version and date: Version 2, 09/06/22. Trial sponsor organisation and contact: Leicestershire Partnership NHS Trust (Dave Clarke). Role of sponsor: Overall responsibility for the conduct and governance of the trial. Role of funder: Review of initial research proposal.
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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.
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Auxiliares de Urgencia , Cuidado Terminal , Humanos , Paramédico , Cuidado Terminal/métodos , Cuidados Paliativos , MuerteRESUMEN
The covid-19 pandemic and associated restrictions have had significant consequences for those living with chronic conditions such as Parkinson's. The restrictions in access to healthcare as well as reductions in social care, family support and community activities have led to decreases in physical and mental wellbeing. However, not everyone has been equally affected and the predictors of distress are currently being investigated worldwide. Here we use data from a UK survey conducted by the charity Parkinson's UK during Summer 2021 to look at physical and social predictors of wellbeing of people with Parkinson's. Specifically, we aimed to look at the combined effects of worsening physical symptoms, social isolation and loneliness on psychological wellbeing when controlling for age, gender and disease duration. The data from 612 participants were analysed using multiple regression analyses and showed that worsened physical symptoms, loneliness and social isolation each independently predicted wellbeing thus showing the impact of both physical symptoms and social factors. Improved access to healthcare and physical activity is needed to help improve physical health. However, addressing the social needs of people with Parkinson's is also important, and not only during a pandemic. Additional interventions may be needed to reduce social isolation and loneliness as there may be added barriers for people with Parkinson's which need to be considered.
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COVID-19 , Enfermedad de Parkinson , Humanos , Factores Sociales , Pandemias , Enfermedad de Parkinson/epidemiología , Reino Unido/epidemiologíaRESUMEN
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.
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Enfermedades Neurodegenerativas , Médicos , Humanos , Neurólogos , Relaciones Médico-Paciente , Emociones , Enfermedades Neurodegenerativas/diagnósticoRESUMEN
BACKGROUND: Patients experiencing homelessness have increased disease burden, increased severity of illness, and increased barriers to accessing care. The provision of high-quality palliative care is therefore essential for this population. State of Homelessness: 18 out of every 10,000 people in the US and 10 out of every 10,000 Rhode Islanders (down from 12 in 2010) experience homelessness. Conceptual Model: High-quality palliative care for patients experiencing homelessness requires a foundation of patient-provider trust, well-trained interdisciplinary teams, coordinated transitions of care, community support, integrated healthcare systems, and comprehensive population and public health measures. CONCLUSIONS: Improving access to palliative care for those experiencing homelessness requires an interdisciplinary approach at all levels from individual providers to broader public health policies. A conceptual model rooted in patient-provider trust has the potential to address high-quality palliative care access disparities for this vulnerable population.
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Prestación Integrada de Atención de Salud , Personas con Mala Vivienda , Humanos , Cuidados Paliativos , Calidad de la Atención de SaludRESUMEN
PURPOSE: People with Parkinson's disease (hereafter Parkinson's) can experience stigma through the attitudes and actions of others (enacted stigma) and through anticipation of enacted stigma and internalisation of negative stereotypes (felt stigma). Self-compassion may protect against the impact of stigma. This study aimed to investigate the relationships between self-compassion, stigma, and psychological distress among people with Parkinson's. METHODS: A total of 130 people with Parkinson's completed questionnaires measuring self-compassion, enacted and felt stigma, and depression, anxiety, and stress. Correlation, mediation, and moderation models were used to investigate relationships between variables. RESULTS: All variables correlated significantly in the expected directions. Felt stigma mediated the relationship between self-compassion and the three outcome variables - depression, anxiety, and stress. Self-compassion did not moderate the relationship between enacted stigma and distress and suggested enacted stigma was associated with distress, regardless of levels of self-compassion. CONCLUSIONS: Self-compassion and both enacted and felt stigma are important predictors of distress for people with Parkinson's. Part of the relationship between lower self-compassion and psychological distress appears to occur via the internalisation of stigma. These findings may be relevant to the development of individualised and societal interventions with the aim of improving the psychological wellbeing of people with Parkinson's.Implications for rehabilitationSelf-compassion was associated with lower levels of psychological distress (i.e., depression, anxiety, and stress) and self-stigma partially mediated this relationship.Self-compassion did not moderate the relationship between enacted stigma and psychological distress, suggesting enacted stigma increases distress, regardless of self-compassion.The development and assessment of the effectiveness of compassion-focused interventions tailored for people with Parkinson's may be important as well as systemic stigma focused interventions.
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Enfermedad de Parkinson , Distrés Psicológico , Humanos , Autoimagen , Autocompasión , Estrés Psicológico/psicología , EmpatíaRESUMEN
PURPOSE: Multiple sclerosis (MS) is a chronic condition linked to a wide range of psychological difficulties. While traditional cognitive behavioural therapy has been studied extensively with people with MS, much less is known about more recent "third wave" approaches. METHODS: A scoping review was carried out by performing a systematic search across MEDLINE Complete, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library up to January 2022. RESULTS: From an initial return of 8306 citations, 35 studies were included, 20 of which were randomised controlled trials (RCTs). These showed that four third wave approaches have been investigated with people with MS to date: acceptance and commitment therapy (ACT), dialectical behaviour therapy (DBT), mindfulness-based stress reduction (MBSR), and mindfulness-based cognitive therapy (MBCT). MBSR and MBCT may be helpful to address a range of psychological difficulties up to three months post-intervention. However, MS-specific adaptations may be required, and more evidence is needed on longer-term effectiveness. Limited evidence is also available for DBT and ACT, but additional research is warranted before any recommendation can be made. CONCLUSIONS: As third wave approaches keep being refined, further more rigorous investigations are needed to implement them to the benefit of people with MS. Implications for RehabilitationMultiple sclerosis is linked to a wide range of psychological difficulties in adults.Little is currently known on third wave psychotherapies for people with MS.Mindfulness-based stress reduction and mindfulness-based cognitive therapy may be helpful to address a wide range of difficulties in MS.Specific adaptations may be needed to deliver suitable therapies to people with MS.Additional research is warranted to build on preliminary findings for DBT and ACT.
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Terapia Cognitivo-Conductual , Atención Plena , Adulto , HumanosRESUMEN
OBJECTIVES: People with advanced chronic obstructive pulmonary disease (COPD) are frequently hospitalized, reporting high physical, psychological and spiritual suffering. Existing research focused on discrete aspects of hospitalization, such as care or treatment, yet lacks a complete picture of the phenomenon. The aim of this study is to understand the lived experience of hospitalization in people with advanced COPD. METHODS: A qualitative, descriptive phenomenological approach was employed to study the phenomenon of hospitalization for people with advanced COPD. Unstructured interviews were conducted during hospitalization at a tertiary care hospital in India, in 2017, audio-recorded, and then transcribed. Giorgi's descriptive phenomenological analysis method guided the analysis. RESULTS: Fifteen people with advanced COPD participated. Emergency admissions were common because of acute breathlessness, leading to repeated hospitalizations. Hospitalization gave a sense of safety but, despite this, people preferred to avoid hospitalization. Care influenced trust in hospitalization and both shaped the experience of hospitalization. Multi-dimensional suffering was central to the experience and was described across physical, psychological and spiritual domains. DISCUSSION: Hospitalization was identified largely as a negative experience due to the perception of continued suffering. Integrating palliative care into the routine care of people with advanced COPD may enable improvements in care.
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Hospitalización , Enfermedad Pulmonar Obstructiva Crónica , Humanos , Ansiedad , Investigación Cualitativa , Cuidados PaliativosRESUMEN
CONTEXT: Patients experiencing housing insecurity have numerous barriers affecting their utilization of medical care. OBJECTIVES: Determine if housing insecurity is associated with palliative care (PC) encounters and hospice services in patients with heart failure who receive care in United States Veterans Affairs (VA) medical centers. METHODS: This retrospective study included inpatients in VA hospitals with a primary diagnosis of congestive heart failure from 2010 to 2020. Housing stability was collected from coding and separated into three cohorts: at risk for homelessness, experiencing homelessness, and stably housed. The primary outcome was a PC encounter during admission and the stably housed cohort was used as the analytic reference. Inverse-probability-weighting (IPTW) was calculated to adjust the likelihood of receiving PC during the index admission. RESULTS: Seventy thousand eight hundred fourty nine veterans were identified. Veterans were identified as at risk for homelessness (n=4039, 5.7%), experiencing homelessness (n=1967, 2.8%) and stably housed (n=64,843, 91.5%). PC was delivered to veterans at risk for homelessness (n=484, 12.0%), veterans experiencing homelessness, (n=161, 8.2%) and patients with stable housing (n=6249, 9.6%). Relative to the stably housed and adjusted for IPTW, those at risk for homelessness received PC services similarly (adjusted OR=1.06, 95% CI 0.94,1.19) and those experiencing homelessness were at lower odds of receiving PC services (adjusted OR=0.62, 95% CI 0.52,0.75). CONCLUSION: Housing stability may be a factor in Veterans receiving PC during hospitalization for heart failure. While the logistical challenges of delivering PC and hospice to people experiencing homelessness are daunting, advocating for these services shows commitment to reducing suffering in life-limiting Illness.
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Insuficiencia Cardíaca , Personas con Mala Vivienda , Veteranos , Insuficiencia Cardíaca/epidemiología , Insuficiencia Cardíaca/terapia , Hospitalización , Humanos , Cuidados Paliativos , Estudios Retrospectivos , Estados Unidos/epidemiología , United States Department of Veterans AffairsRESUMEN
Huntington's disease (HD) is an inherited, life-limiting neurodegenerative condition. People with HD experience changes in cognitive, motor and emotional functioning, and can also, mainly at later stages, exhibit behaviours that professionals and carers might find distressing such as hitting others, throwing objects, swearing or making inappropriate comments. While clinical formulation (an individualised approach used by mental health professionals to describe an individual's difficulties) is a helpful tool to conceptualise patients' wellbeing, a specific formulation framework has not yet been developed for HD. However, evidence has shown that formulation can help guide clinical interventions and increase consistency of approach across multi-disciplinary teams, refine risk management, and improve staff or carers' empathic skills and understanding of complex presentations. As a consequence, this paper proposes a new clinical formulation model for understanding distress among people with HD, based on a biopsychosocial framework. More specifically, this includes key elements centring on an individual's past experience and personal narratives, as well as anticipatory cognitions and emotions about the future. In-depth discussions regarding the components of the model and their importance in HD formulations are included, and a fictional yet representative case example is presented to illustrate their application within the context of personalised care.
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Huntington's disease (HD) is a rare and complex condition where affected individuals, family members, caregivers, and clinicians face a number of both long-term and fluctuating challenges. The predominant biomedical framework adopted in HD to date has traditionally viewed it as a brain disorder first and foremost. As a consequence, one of the most challenging aspects of the condition-psychological difficulties and their care-is often not given the emphasis it deserves in everyday clinical practice. Here, we propose a manifesto outlining five points to address the quality, effectiveness, availability, and accessibility of psychological care in HD. These include (1) Listening to People with HD, (2) Reformulating Difficulties Psychologically, (3) Exploring New Interventions, (4) Increasing Psychological Provision, and (5) Learning from Other Conditions. As the search for a cure continues, we hope that this manifesto will create a new impetus towards refining the current approach to psychological difficulties in HD and ultimately improve the quality of life of the tens of thousands of families affected by HD worldwide.
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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.
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Asco , Epilepsia , Adulto , Emociones , Epilepsia/complicaciones , Humanos , Investigación Cualitativa , ConvulsionesRESUMEN
OBJECTIVE: Stigma is reported to cause as much distress and effect on quality of life for individuals with epilepsy as the physical symptoms of seizures. Existing quantitative reviews have focused on describing levels of stigma in epilepsy, but no qualitative review has been undertaken despite the increasing number of relevant studies. We provide a qualitative synthesis to aid the understanding of stigma experiences in adults with epilepsy across different sociocultural contexts. METHODS: A systematic database search yielded an initial set of 3,032 relevant papers, of which 28 were included. A meta-synthesis was conducted according to a meta-ethnographic approach which has been adapted for health research. RESULTS: Five themes were generated: 1) Societal negative perceptions of epilepsy result in discrimination and rejection; 2) Internal attributions of blame lead to negative self-perception and shame; 3) Stigma impacts everyday life and contributes to reliance on others; 4) Stigma is managed through concealment and avoidance; 5) Support from others is beneficial but dependant on own and others' understandings of epilepsy. These themes highlighted the key individual experiences of epilepsy stigma, which appeared to some degree culture-specific. Culturally-informed misconceptions of epilepsy were readily internalised, resulting in emotional challenges and affecting participants' lives. Strategies for coping with this were also described. SIGNIFICANCE: This synthesis characterised the experiences of stigma among adults with epilepsy and highlighted key similarities and differences in these experiences across sociocultural contexts. Educational programmes to inform communities about epilepsy hold importance going forward.
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Epilepsia , Calidad de Vida , Adaptación Psicológica , Adulto , Humanos , Investigación Cualitativa , Convulsiones , Estigma SocialRESUMEN
PURPOSE: Research on breaking bad news (BBN) in healthcare has mostly focused on the doctor-patient interaction during a single consultation. However, it has been increasingly recognised that BBN is a wider process that also involves other healthcare professionals. This qualitative study explored non-medical1 healthcare professionals' involvement in BBN to newly diagnosed patients with motor neurodegenerative conditions in the UK. MATERIALS AND METHODS: 19 healthcare professionals working with people with motor neurone disease, multiple sclerosis, Parkinson's disease or Huntington's disease took part in individual, semi-structured interviews which were analysed using thematic analysis. RESULTS: Four themes were constructed: dealing with the diagnostic aftermath, unpacking the diagnosis, breaking bad news as a balancing act and empowering patients to regain control over their health and lives. Participants reported being broadly involved in BBN by supporting patients with negative diagnostic experiences, re-iterating diagnostic information and helping patients understand the impact of their condition. The challenges of effectively breaking bad news and how these difficult conversations could help empower patients were also emphasised. CONCLUSIONS: BBN was a critical and challenging aspect of healthcare professionals' clinical work with newly diagnosed patients with motor neurodegenerative conditions. Besides providing information, BBN was perceived as a way to educate patients, encourage them to make decisions and prepare for the future.Implications for rehabilitationBreaking bad news is a potentially under-recognised but significant aspect in the neurorehabilitation of neurodegenerative conditions.Listening to patients' stories about a long and occasionally unsatisfactory diagnostic journey and allowing them to express their frustration can be critical in regaining patients' trust and building a relationship with them.Newly diagnosed patients have not always received adequate information about their condition at diagnosis or they might have not understood or retained that information. It is, therefore, essential that patients' understanding of their condition is assessed, misconceptions are cleared and appropriate information about the nature and impact of the diagnosis is provided.Irrespective of the length of experience, breaking bad news was perceived as a multi-faceted, challenging, stressful and emotionally demanding task.Formal support and specialised training on breaking the bad news that addresses the incurable, unpredictable and progressive nature of motor neurodegenerative conditions could help professionals with this challenging task.