BACKGROUND:Previous research in individuals with epilepsy suggests that some of the physical, disgust-eliciting manifestations of seizures may trigger self-disgust. Self-disgust has previously been linked to experiences of emotional neglect and trauma, especially in childhood. Both these are more common in people with functional dissociative seizures than in those with epilepsy. Hence, this study aimed to understand the experience of self-disgust in people with functional/dissociative seizures (FDS). METHODS:This qualitative study used interpretative phenomenological analysis (IPA). Following initial screening using the Self-Disgust Rating Scale, purposive sampling was used to recruit eight eligible participants with high levels of self-disgust to participate in individual semi-structured interviews. RESULTS:In the larger sample (n = 108), 85.2% of participants reported high levels of self-disgust. The exploration of the phenomenology of self-disgust in a group of high scoring individuals produced four themes: 'understanding the origin of self-disgust as based in rejection', 'experiencing self-disgust as intense and inescapable', 'understanding the relationship between self-disgust and FDS' and 'suppression and seclusion - attempting to cope with self-disgust'. CONCLUSIONS:Self-disgust may be highly relevant to a subpopulation of pwFDS and may arise from the internalisation of traumatic, seizure-related experiences. While attempts to reduce self-disgust may provide short-term relief, these could reinforce and maintain the underlying cognitive-affective state. Although often under-recognised, it is important to assess for the presence of self-disgust in clinical settings and to offer additional support around engagement and therapeutic alliance development. A number of therapeutic and systemic approaches to address high levels of self-disgust are discussed.

OBJECTIVE:Individuals with the Huntington disease gene can often remain symptom free until their mid-40s. While the experiences of partners of individuals at the symptomatic stage of Huntington's disease have been explored, the experiences of the partner in this pre-symptomatic stage have been largely ignored. This qualitative study explores the experiences of partners of individuals with pre-symptomatic Huntington's disease to provide new insights into the perspectives of and challenges to partners during this stage. METHODS AND MEASURES:Eight partners (five women and three men) of individuals (four women, four men) with pre-symptomatic Huntington's disease from three different countries (UK, US and Canada) took part in individual, semi-structured interviews. Reflexive thematic analysis was used to create themes. RESULTS:The analysis resulted in three themes: (1) Partners' navigation of time and uncertainty during the pre-symptomatic stage;(2) Immersion in the research: a road to hope; (3) Us versus the world: how the shared experience of HD strengthened relationships. CONCLUSION:Partners were affected by Huntington's disease even before symptoms appeared and developed proactive strategies to manage uncertainty and future planning. Couples often navigated these challenges together, strengthening their relationship through communication and shared decision-making. The study highlights implications for supporting partners' psychological well-being in both research and clinical practice.

PURPOSE:This thematic synthesis explored the experiences of being a young carer to a parent with Huntington's disease. METHODS:A systematic search strategy was utilised across eight databases, resulting in 13 papers that met the inclusion criteria. Thomas and Harden's thematic synthesis approach was used to guide the methodological decisions and analyse the data. RESULTS:The analysis resulted in three themes (1) Lack of awareness, undervalued and unsupported: barriers to young carers accessing support (2) Adult responsibilities: impact on developmental stages and worries about the future, (3) Engaging with the future or living in the present: managing the impact of being a young carer while at risk of HD. CONCLUSIONS:The experiences of young carers to a parent with HD share some similarities with other young carers to a parent with chronic illness. However, a key difference is the constant reminder of their possibility of inheriting the HD gene and the effects of this on their lives. This makes it difficult for them to envision a future beyond being a young carer.

Many individuals affected by the hereditary neurological condition Huntington's disease (HD) have reported experiences of stigmatization, yet the extant literature is currently theoretically and methodologically underdeveloped. Therefore, this scoping review aimed to examine the methodological approaches and theoretical conceptualizations of stigma used and to identify areas of underrepresentation given the emerging evidence base. A systematic search of five databases and hand-searches of included papers resulted in 3273 articles. Thirty-two met predefined inclusion criteria, which included primary research reporting experiences of stigma by people with HD or who have an inherited genetic risk. Selected articles represented qualitative (59% of included papers), quantitative (22%), and mixed-methods (19%) designs. Almost half did not provide theoretical definitions of stigma. Theories describing societal unacceptance based upon a discrediting attribute of an individual by the sociologist Erving Goffman, and of discrimination solely based upon real/perceived differences from the typical genome, were most prominent among theories referenced, conceptualizing stigma and genetic discrimination respectively. Findings suggested a limited theoretical grounding of stigma in primary research exploring HD, with a lack of discussion around conceptualizations of stigma applied to people affected by HD. Future research should apply clear definitions to differentiate constructs contributing to different forms of stigma and could explore whether experiences of stigma and support needs might differ across groups affected by HD. Implications for theoretical development and multilevel interventions are also discussed.

Psychological distress is common among people living with neurodegenerative diseases of the motor system (NDMS) such as Parkinson’s disease, motor neurone disease/amyotrophic lateral sclerosis, and Huntington’s disease. Yet the way psychological difficulties are conceptualised in these populations is heavily shaped by medicalised language. Terms such as ‘non-motor symptoms’ and ‘neuropsychiatric manifestations’ were originally introduced to draw attention to difficulties beyond movement changes but they now risk positioning mood, anxiety, apathy and related experiences solely as direct manifestations of neurological degeneration. This framing can obscure the rich psychosocial contexts in which distress arises, blur distinctions between emotional responses and disease processes, and reinforce deficit-based and disease-focused understandings that privilege biological explanations over person-centred ones. It may also influence clinical communication, treatment decisions, help-seeking behaviour, and access to psychological therapy and psychosocial interventions, contributing to inequities in care. This article argues that linguistic choices are not neutral: they construct the boundaries of what counts as legitimate knowledge, shape expectations about causality, and delimit the interventions considered appropriate. Without critical attention to these assumptions, individuals may experience distress as biologically inevitable and clinicians may overlook psychosocial contributors that are amenable to change. We propose that greater awareness of the power of language, coupled with empirical investigation into its effects, is essential for developing a linguistic reformulation of psychological distress in NDMS and more holistic, contextually grounded approaches to supporting psychological wellbeing.

BACKGROUND:Trauma-informed palliative care aims to improve end-of-life experiences by recognising and responding to the presence of psychological trauma. While many practitioners support the approach, they also acknowledge the need to build a stronger evidence base. AIM:To: (1) understand the methodology and defining features of existing research; (2) describe how the impact of psychological trauma at the end-of-life is understood; and (3) describe the nature of, and challenges to, palliative care approaches that recognise and respond to such trauma. DESIGN:A systematic scoping review was conducted following the Joanna Briggs Institute guidelines. The review protocol was registered on Open Science Framework. DATA SOURCES:Eight electronic databases were systematically searched; evidence sources that considered psychological trauma in an end-of-life context were included. RESULTS:Ninety-nine sources (13 countries) were identified. 40% were clinical case studies. Cancer was the primary diagnosis for the majority of patients in 55 sources and 24 sources focussed on veterans. Six ways of describing the impact of psychological trauma at the end-of-life were identified. Few sources (n = 20) implemented trauma-informed care; 15 of these were clinical case studies. Though trauma-informed palliative care was not always explicitly present, six palliative care approaches to recognising and responding to psychological trauma, and five main challenges to its effective implementation, were identified. CONCLUSIONS:Limited research has been conducted on trauma-informed palliative care. However, the review identified a substantial body of evidence that describes concepts relevant to its approach. These findings provide a valuable starting point for future research.

Spiritual distress appears common in people with advanced chronic obstructive pulmonary disease but is likely to be under-reported. Evidence indicates that spiritual distress becomes more intense during periods of hospitalisation when physical symptoms are exacerbated. Existing evidence on how such distress is experienced is mainly drawn from the Western context, which may not be appropriate to guide care for those from other cultures and contexts. The experience of spiritual distress in people with advanced chronic obstructive pulmonary disease in India is explored in this study. A descriptive, phenomenological approach was employed. People (n = 15) who were hospitalised with advanced chronic obstructive pulmonary disease were purposively sampled from an Indian tertiary care hospital in 2017. Unstructured interviews were conducted, audio-recorded, then transcribed. Analysis followed Giorgi’s method and themes related to spiritual distress were developed. Three main themes were identified. (i) Purposeless life: repeated hospitalisation with acute breathlessness caused purposelessness but completing family responsibilities gave a sense of fulfilment. (ii) Despair and hope: extreme thoughts of ‘wishing to die but wanting to live’ were experienced alternately. (iii) Discontentment and death wish: Suffering caused feelings of abandonment by God, which triggered death wishes. This study has indicated that family and God were central to coping with spiritual distress during hospitalisation in Indian people with advanced chronic obstructive pulmonary disease. Identifying spiritual distress in its context and culture and the utilisation of appropriate spiritual support are important for palliative care professionals providing care to culturally diverse populations.

BACKGROUND:Hospital admissions of patients who are terminally ill can be associated with poor experiences and unwanted outcomes, such as dying away from home. While area deprivation is associated with emergency hospital admissions in the last year of life, few studies have explored the relationship between deprivation and ambulance clinicians' decisions to convey a patient to the hospital. The aim of this study is to understand the overall proportion of terminally ill patients conveyed to hospitals by paramedics in North West England, and to explore the associations between hospital conveyance and area deprivation. METHODS:This is an observational study using routinely collected ambulance data held by the North West Ambulance Service NHS Trust in England, UK. Data on adult patients (aged 18+ years) who were coded by ambulance personnel as having a terminal illness were extracted for the period from March 2021 to February 2022. Logistic regression mixed models were used to examine the associations between hospital conveyance and area deprivation. To control for confounding variables, additional data were collected on age, gender, ethnicity, location, clinical assessment codes and place of residence. RESULTS:The number of calls attended by ambulance clinicians for terminally ill patients included in the analysis was 1737. Ten per cent of these calls resulted in the patient being taken to the hospital. The odds of being taken to hospital were 1.51 (95% CI 1.06 to 2.16) times greater for patients living in the 20% most deprived areas compared with those in less deprived areas, in the final model adjusted for age, gender, place of residence and the initial coded reason for the call. CONCLUSION:This study suggests that patients with terminal illnesses living in the most deprived areas are more likely to be taken to hospital by ambulance clinicians, compared with those in less deprived areas. Overall, however, a small proportion of patients classed as terminally ill in all areas were taken to hospital. This implies that most end-of-life care provided by ambulance clinicians in this region will be in a patient's place of residence, with implications for time, resources and training.

People with Huntington's disease (HD) commonly experience anxiety, yet access to psychological interventions remains limited. Guided self-help is a low-cost, scalable, evidence-based approach with the potential to improve access to psychological support. This qualitative study aimed to explore participants' experience of GUIDE-HD, a remote guided self-help intervention designed to address anxiety in people with HD based on cognitive behavioural therapy and acceptance and commitment therapy, by examining: (i) the acceptability of the intervention, (ii) any perceived benefits or challenges, and (iii) ways to enhance its relevance and accessibility for people with HD (pwHD). Qualitative individual semi-structured interviews were conducted with nine pwHD and three carers and analysed using framework analysis. Three overarching themes emerged: (1) A therapeutic journey for people with and affected by HD; (2) Mechanisms of benefit; (3) Experiencing various gains. Participants valued the intervention's relevance, structure, accessibility, personalization and facilitation. Reported gains extended beyond reduced anxiety to increased acceptance of the realities of living with and managing the condition and better relationships. While a number of limitations should be considered, such as the sample size and its predominant female representation, the GUIDE-HD intervention was acceptable and showed promise as a tailored psychological approach for pwHD.

BackgroundDeficits of emotion recognition have received increasing attention in people with Huntington's disease (HD) in the three decades since the discovery of the HD gene. However, the characterisation of such deficits across different disease stages, types of stimuli, and sensory modalities is currently unclear.ObjectiveThis study aimed to provide a comprehensive review of the evidence on emotion recognition deficits in HD gene carriers (both manifest and premanifest) over the three decades since definitive gene testing.MethodA systematic review was carried out from January 1993 to January 2025 across MEDLINE, PsycINFO, Academic Search Complete, and CINAHL (PROSPERO registration: CRD42023398649).ResultsFrom 9735 initial citations, 59 studies were eventually included. In manifest HD, facial recognition of negative emotions such as anger, fear, disgust, and sadness was consistently impaired, whereas happiness and neutral expressions were generally spared. A few auditory studies showed consistent deficits for disgust, fear, and anger, while happiness and sadness appeared less affected. Only preliminary evidence is currently available for deficits involving body language, visual and written vignettes, videos, and olfactory and gustatory tasks. Although sparser, the evidence for premanifest HD suggests that some individuals may develop significant recognition difficulties prior to motor onset, particularly due to early frontostriatal deterioration and white matter disruption.ConclusionsImpairments of facial recognition of negative emotions are reported consistently in manifest HD, while only preliminary results are available for other modalities. The evidence involving premanifest HD is much sparser. Key implications for clinical practice and future research are outlined and discussed.

BACKGROUND:Caregivers of people with Parkinson's disease are at risk of experiencing caregiver burden. Understanding contributing factors is required to develop appropriate targeted interventions and support for this group. This systematic review provides an updated appraisal and synthesis of quantitative studies assessing predictors of burden among informal caregivers of people with Parkinson's. METHOD:Five electronic databases (APA PsycINFO, CINAHL, MEDLINE, Web of Science, and Cochrane Library) were systematically searched (from inception until July 2024), supplemented by hand-searches. Study quality was assessed using the cross-sectional JBI Critical Appraisal Checklist. Results were synthesized narratively. RESULTS:Forty-one studies were included. Predictors of increased burden included greater impact of motor symptoms on activities of daily living, greater severity of neuropsychiatric symptoms, poorer quality of life of the person with Parkinson's, and poorer caregiver mental health. Demographics, presence of motor symptoms, motor complications, and general cognitive function did not predict burden. Evidence was inconclusive for several variables including disease stage and duration, motor symptom severity, functional ability, overall non-motor symptoms, mental health of the person with Parkinson's, and caregivers' involvement and protective factors. CONCLUSION:Several areas for potential future intervention are indicated, although methodological weaknesses within the literature constrain the robustness of conclusions. Key areas for future research include exploring understudied variables (caregiver personality and coping style, relationship quality, and positive aspects of caregiving) that may be important predictors of burden, specifying and utilizing a more consistent definition of "informal caregiver," and recruiting younger and non-spousal caregivers and more diverse samples regarding disease severity.

As the prevalence of dementia rises exponentially globally, instituting practices to support the dying process of people affected by dementia is a public health priority. However, end-of-life quality indicators such as place of death provide limited information about the totality of the dying process. Hence, this study's aim was to identify factors affecting the relatively understudied concept of final place of care (where care was received in the last three days of life i.e. home/inpatient hospice/hospital) and its concordance with previously stated preferences (goal-concordance). A retrospective cohort study was conducted using secondary data (electronic medical records) from 284 individuals enrolled in a home-based palliative care service for people with advanced dementia in Singapore. Despite demonstrating positive impacts, the service was unable to meet some individuals' end-of-life preferences. Analysis used multivariate binomial logistic regression, concordance and sensitivity analyses. Results found home to be the most common final place of care (81.7%). Better biological and functional status, and inconsistent preferences for place of care and death predicted hospital admission for care (9.2%). Discomfort, oral feeding, psychosocial challenges, and family unemployment predicted inpatient hospice admissions (9.2%); these were often late and unplanned, suggesting a preference for home until death was imminent. Better prognosis, infection two weeks before death/admission, higher caregiver burden and psychosocial challenges predicted non-concordance with preferences (14.4%). The results highlight the unpredictable, protracted trajectory of people with advanced dementia and the multifaceted challenges of end-of-life care and death. Unlike place of death, relatively stable factors (sociodemographic, chronic comorbidities) had no effect on final place of care. These fresh insights, supported by findings about end-of-life transitions in international literature, have implications for policies and practices to advance the global health goal of facilitating people with advanced dementia not just to die but to spend their final days at their place of choice.

ObjectiveIrritability has been reported as a common psychological co-occurrence with Huntington's disease (HD). Irritability associated with HD is variously attributed to neurological changes, an understandable response to increasing difficulties with cognition and communication, or a multifactorial combination of the two or more causes. To improve our understanding, we aimed to explore perspectives and lived experiences of irritability among individuals affected by HD.Methods and measuresIndividual semi-structured interviews were conducted with 12 participants (50% female) who were gene-positive for HD. Reflexive thematic analysis was used to analyse the resultant transcripts.ResultsThree themes were generated: 'Navigating the complex multifactorial causes of irritability', which reflected participants' perceptions of causes and amplifiers of irritability; 'The tyranny of irritability', which explored how irritability was perceived as powerful and oppressive; and 'Ongoing efforts to resist irritability', which described how participants endeavoured to address irritability.ConclusionParticipants appeared to make sense of irritability as a biopsychosocial experience with multifactorial origins, suggesting the role of attribution theory in understanding their search for meanings and attempts at resistance. Our findings indicate the need to develop meaningful psychological interventions and educational materials to support individuals and their loved ones to understand and address feelings of irritability.

OBJECTIVE:Research suggests people with functional/dissociative seizures (pwFDS) often experience challenging encounters with healthcare professionals (HCPs). PwFDS report communication problems, difficult relationships with HCPs and sub-standard care. However, no previous reviews have explored this issue from the perspective of pwFDS. Therefore, this systematic review aimed to explore pwFDS' experiences of their encounters with HCPs. METHODS:Four databases (Scopus, PsycINFO, CINAHL and MEDLINE) were systematically searched for peer-reviewed qualitative studies in February 2024. Twenty studies published 2004-2023 with 270 pwFDS were included and analysed using thematic synthesis. The Critical Appraisal Skills Programme checklist for qualitative research was utilised to appraise the quality of included studies. RESULTS:The findings highlight a number of difficulties which pwFDS face in their encounters with HCPs. Three superordinate themes with five subthemes were developed: 'clinician uncertainty feeds patient uncertainty', 'not fitting into the model of medical illness', 'stigma fuelling negative experiences with HCPs'. Positive encounters were mentioned but these were reported in the minority of instances. CONCLUSIONS:Findings highlight the difficult experiences pwFDS face in their encounters with HCPs. PwFDS experience uncertainty about their condition due to poor knowledge and stigmatising beliefs about FDS. Difficult encounters with HCPs are frequently experienced, which may lead pwFDS to avoid accessing medical support.

Living at risk of a genetically inherited disease can be a challenging experience causing psychological distress as well as the possibility of the genetic disease leading to physical health problems. Huntington's disease (HD) is a genetic, neurodegenerative condition. It causes motor dysfunction, cognitive decline and, during the progression of the disease, different psychological difficulties are common. A total of 12 participants living at risk of HD were interviewed and interpretative phenomenological analysis methodology was used to understand their experiences of maintaining psychological well-being. This resulted in three themes: (1) "you're constantly in limbo": living in two worlds; (2) "I have to live, just bloody live": managing the possibility of a time-limited lifespan; and (3) "I try and try my hardest to look past the disease": the exhausting quest to keep living well. The findings indicated a need for improved knowledge within professional settings, such as for family doctors, counselors, and other health professionals, specific strategies that genetic counselors can use to support this group, and provision of accessible support and implementation of systemic interventions that would offer support for psychological coping strategies and communication around well-being to the individual and their family unit. Future research could contribute to the formation of such knowledge and the provision of HD-aligned services to help support the psychological well-being of people living at risk of HD.