Experiences of young people growing up in a family with Huntington's disease: A meta-ethnography of qualitative research.

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.

Stigma, coping strategies, distress and wellbeing in individuals with cervical dystonia: a cross-sectional study.

Cervical dystonia (CD) is a movement disorder which causes sustained muscle contractions in the neck leading to abnormal postures and repetitive movements. As it is a highly visible condition, people with CD can experience stigma, which may lead to unhelpful coping strategies and increased psychological distress. This study investigated whether adaptive and maladaptive coping strategies mediate the relationship between stigma and psychological outcomes in people with CD. A total of 114 adults with CD completed measures of stigma, coping, health-related quality of life (HRQOL), psychological distress (depression, anxiety, stress), and psychological wellbeing at one time point. Participants' levels of distress were high, compared to the general population. Correlational analyses showed increased stigma and maladaptive coping (e.g. substance use, behavioural disengagement) were both significantly related to increased distress, lower wellbeing and lower HRQOL, whereas higher adaptive coping (e.g. acceptance, humour) was only related to higher wellbeing. In a parallel mediation model, maladaptive coping strategies mediated the relationship between stigma and distress, HRQOL and wellbeing, but adaptive coping strategies did not. These findings suggest that maladaptive coping may play an important role in explaining the relationship between stigma and some aspects of distress and wellbeing in CD. Interventions which focus on reducing different aspects of maladaptive coping may be helpful to improve wellbeing as well as reducing stigma.

Living with Parkinson's in England during and beyond COVID-19 restrictions: a longitudinal qualitative study.

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.

Guided self-help for anxiety among Huntington's disease gene expansion carriers (GUIDE-HD) compared to treatment as usual: a randomised controlled feasibility trial.

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.

The joint impact of symptom deterioration and social factors on wellbeing for people with Parkinson's during the covid-19 pandemic in the UK.

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.

Parkinson's and the couple relationship: a qualitative meta-synthesis.

OBJECTIVE: The aim was to synthesise the current qualitative literature on the impact of Parkinson's on the couple relationship, including individual and dyad studies. METHODS: Noblit and Hare's meta-ethnography approach was applied; 19 studies were included in the review following a systematic search of four electronic databases. The studies included experiences of 137 People with Parkinson's and 191 partners. FINDINGS: Analysis produced three themes: (1) Disruption of roles and responsibilities; (2) Challenges to communication and closeness; and (3) Grief, burden, and isolation. The themes are discussed with supporting extracts from the 19 included studies. CONCLUSION: The findings highlight the challenges that couples experience and the individual and relational resources that support coping. Support should be individually tailored to each couple as the impact on the couple may change in response to individual and contextual factors. This review adds further evidence to the case for relationally focused multidisciplinary team input at all stages of Parkinson's disease.

Neurologists' lived experiences of communicating the diagnosis of a motor neurodegenerative condition: an interpretative phenomenological analysis.

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.

Stigma, self-compassion, and psychological distress among people with Parkinson's.

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.

A meta-ethnographic synthesis of the experiences of stigma amongst people with functional neurological disorder.

PURPOSE: Functional neurological disorder (FND) causes many neurological symptoms and significant disability. It is often misunderstood by medical professionals and the public meaning stigma is regularly reported. The aim of this review was to synthesise the qualitative findings in the literature to develop a more in-depth understanding of how people with FND experience stigma to inform future interventions. METHOD: This review used a meta-ethnography approach. Five databases were searched (PsycINFO, Web of Science, CINAHL, MEDLINE, and EMBASE) in February 2021 and updated in July 2022 for qualitative papers in FND. Included papers were critically assessed using the critical appraisal skills programme (CASP) checklist. Data were analysed and synthesised utilising meta-ethnography. RESULTS AND CONCLUSION: Sixteen papers were included in the final synthesis. Four major themes emerged: stigmatized by delegitimization; stigmatized by social exclusion and rejection; coping with stigma; and stigma and identity. The results identified negative, stigmatizing attitudes towards people experiencing FND symptoms in a variety of contexts including healthcare and other social institutions. The effects of stigma led to further exclusion for participants and appeared to trigger coping styles that led to additional difficulty. Stigma is a key part of the illness experience of FND and needs to be addressed.

Functional neurological disorders can cause a significant degree of disability for those individuals who experience them.This experience appears to be compounded by stigma these people encounter as a result of their illness in their day-to-day lives as well as in their contact with institutions including education, workplaces, and healthcare.A potential strategy to reduce the impact of stigma is through raising awareness of the reality of this condition which may be achieved through education targeted towards healthcare providers.

Living with functional movement disorders: a tale of three battles. An interpretative phenomenological analysis.

OBJECTIVES: Functional movement disorders (FMD) have poor prognosis and high physical and psychological co-morbidity. Their pathogenesis remains unclear, clinicians often find them difficult to treat, and lack of agreement between healthcare providers and patients is common. This study aimed to explore the experiences of living with FMD to improve understanding of its impact and patients' needs. METHODS: Ten participants across the UK were recruited online through a charity's social media platforms. Semi structured interviews were conducted via video calls and were audio recorded and verbatim transcripts were analysed using interpretative phenomenological analysis. RESULTS: Three superordinate themes were generated from the data, representing the three battles fought by the participants: (1) intrapersonal: the tug of war with the secret agent within- the power struggle with symptoms; (2) interpersonal: navigating stigma and self-preservation; (3) systemic: pursuing hope and treatments against helplessness and passivity. CONCLUSIONS: Loss of control, feelings of powerlessness and oppression by symptoms is often mirrored in participants' experiences of seeking healthcare and navigating societal stigma. Active efforts to regain influence, improve quality of life and maintain hope can be jeopardised by others' dismissive attitudes and lack of knowledge. Antonovsky's model of salutogenesis is proposed as a useful framework for facilitating empowerment in FMD service provision.

More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington's Disease.

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.

Adjusting to living with Parkinson's disease; a meta-ethnography of qualitative research.

PURPOSE: Parkinson's disease (PD) is a condition which causes significant difficulties in physical, cognitive and psychological domains. It is a progressive condition which people have to live with for a long time; consequently, there is a need to understand what contributes to individual adjustment. This review aimed to answer the question "how do individuals adjust to PD?" METHOD: A systematic search of three databases (MEDLINE, CINAHL and PsycINFO) was carried out of papers documenting the adjustment process when living with PD and the findings were synthesised using a meta-ethnographic approach. RESULTS: After exclusion based on eligibility criteria, 21 articles were included and were assessed for quality prior to analysing the data. Three main themes are proposed relating to the process of adjustment: "maintaining a coherent sense of self", "feeling in control" and "holding a positive mindset". Although many of the studies described challenges of living with PD, the results are dominated by the determination of individuals to self-manage their condition and maintain positive wellbeing. CONCLUSION: The results highlight the need to empower patients to self-manage their illness, mitigating the effects of Parkinson's disease and supporting future wellbeing.IMPLICATIONS FOR REHABILITATIONIndividual identity disruption impacts on the self-value and sense of self coherence in individuals living with Parkinson's disease.Healthcare professionals should appreciate the complexity of the adjustment process which is related to the ability to maintain a coherent sense of self, to feel in control and to hold a positive mindset.Healthcare professionals should ensure information and knowledge related to self-management is tailored to an individual's understanding and experience of the disease.

Factors predicting first appointment attendance at a traumatic brain injury clinical neuropsychology outpatient clinic: a logistic regression analysis.

BACKGROUND: The purpose of our study was to investigate factors which predicted first appointment attendance within a traumatic brain injury (TBI) neuropsychology outpatient department. MATERIALS AND METHODS: A newly introduced telephone triaging system was implemented in a clinical neuropsychology service for individuals with a TBI. The effects of receiving a triage telephone call, amongst other variables, were analysed as predictors of attendance at the first face-to-face clinic appointment. The data from 161 individuals were analysed using routine patient information collected by the clinical neuropsychology service. Logistic regression analyses were performed to investigate predictors of first appointment clinic attendance. RESULTS: Logistic regression analyses identified higher age, shorter waiting times, and answering the triage call as potential predictors of attendance, highlighting where the service might focus efforts to facilitate attendance. CONCLUSIONS: Both patient and service factors were found to be significant predictors of patient attendance. Further service evaluation could explore patients' experiences of triage telephone calls, and investigate relationships between waiting times and neuropsychological outcomes.IMPLICATIONS FOR REHABILITATIONIdentifying predictors of appointment attendance can allow the service to focus on the needs of particular patient groups.Implementing a telephone triage initiative had positive effects, both on waiting times and efficient use of face-to-face clinic time.The analysis highlighted the need to think about better ways of reaching out to younger individuals and those who have waited longer to attend appointments, who are less likely to attend once invited.

The experience of a sample of individuals in the United Kingdom living in the pre-manifest stage of Huntington's disease: An interpretative phenomenological analysis.

This paper explores the experience of ten individuals living in the UK who were in the pre-manifest stage of Huntington's disease (HD), a genetic neurodegenerative condition. Data were gathered using semi-structured interviews and analyzed using interpretative phenomenological analysis. Three themes were reported from the data: 'feeling limited by time', 'the perception of stalling time', and 'making the most of time', all highlighting the way in which time holds significant meaning when living in the pre-manifest stage of HD. This study has highlighted the difficulties experienced by individuals when adjusting to the pre-manifest stage of HD. Feeling able to manage their anxieties and dealing with ongoing uncertainty related to future deterioration was key to supporting their wellbeing, facilitated by factors such as positivity and hope. Individuals may benefit from counseling which supports them to develop proactive coping strategies to manage their anxieties and acceptance of an uncertain future.

Healthcare professionals' involvement in breaking bad news to newly diagnosed patients with motor neurodegenerative conditions: a qualitative study.

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.

Experiences of Mindfulness-Based Cognitive Therapy for Premanifest Huntington's Disease.

BACKGROUND: Psychological difficulties such as anxiety, depression, and irritability are common in Huntington's disease, even for premanifest individuals. However, very little evidence exists of psychological approaches to manage this distress. We have conducted a feasibility study with an embedded qualitative component to investigate the possibility of using mindfulness-based cognitive therapy (MBCT) and present here the findings from the qualitative data. OBJECTIVE: To investigate the experience of premanifest individuals learning and practising mindfulness through completing a course of MBCT. METHODS: Twelve premanifest individuals completed a course of MBCT and attended three follow up reunion meetings over the following year. Eleven participants agreed to be interviewed post-course and ten participants one year post-course about their experience of the course and any impact on their lives. Seven participants nominated a friend or relative (supporter) to be involved in the research, of whom six agreed to be interviewed post-course and two at one year about the impact of the course on the participants. Data were analysed using reflexive thematic analysis. RESULTS: Four themes were constructed from the data: 1) A meeting of minds: the group facilitating learning and support; 2) Mindfulness is hard, but enables more effective emotional management; 3) Mindfulness can change the relationship with self and others; and 4) Benefiting from mindfulness: the importance of persistence. CONCLUSION: The participants who completed the course found it beneficial. Some participants reported reductions in psychological distress, a greater sense of calm and better emotion regulation, with some of these positive changes also noticed by supporters. MBCT is worthy of further investigation for this population.

Neurologists' current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey.

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.

Experiences of living with dystonia.

PURPOSE: Dystonia is a chronic and incurable movement disorder. This qualitative study aimed to enhance understanding of the condition by exploring the experience of living with dystonia. METHOD: Interpretative phenomenological analysis was used to analyse data gathered through semi-structured interviews. Eight participants were recruited via a UK-based dystonia charity. RESULTS: Three superordinate themes emerged from the data: (1) dealing with ignorance and uncertainty: navigating health services with a rare, poorly understood condition; (2) the challenge of social isolation: overcoming barriers to positive social identity; and (3) fear of psychological explanations: the impact of stigmatised attitudes towards psychological explanations for dystonia symptoms. CONCLUSION: Coping with a rare and chronic condition led to participants feeling isolated and stigmatised by health care services and their communities. Participants were able to overcome this challenge to their identities through the use of social support, particularly from other people with dystonia. Recommendations for reducing the stigmatising experiences of people with dystonia can help to ease the process of adjustment to the illness and enable people to pursue meaningful lives and positive identities. Recommendations for research are aimed at increasing knowledge about these processes.IMPLICATIONS FOR REHABILITATIONDystonia has a pervasive, negative impact on the lives of people with the condition.The struggle for diagnosis marks the beginning of a period of psychological adjustment, the difficulty of which is compounded by social isolation and stigma.Support groups and peer interaction help people to integrate dystonia into their concept of a meaningful life and identity.Health professionals should play a pivotal role in assisting patients during the process of adjustment and on-going self-management through sensitive communication and signposting to wider support services.

Does a lack of social support and perceived stigma influence the relationship between motor neurone disease-related stress and psychological distress?

OBJECTIVES: This study aimed to investigate the mechanisms through which social support and felt stigma influence the relationship between motor neurone disease (MND)-related stress and psychological distress for people with MND. Although a lack of social support has been identified as a significant predictor of psychological distress for individuals with MND, the mechanisms through which this relationship exists have not been assessed, nor have the predictive nature of stigma. Furthermore, the theoretical model specifying the effects of enacted stigma on self-stigma has not been tested in individuals with MND. DESIGN: A cross-sectional design utilizing an online survey method was used. It was hypothesized that social support would moderate the relationship between MND-related stress (operationalized as enacted stigma or physical functioning) and psychological distress (operationalized as depression, anxiety, and stress). Furthermore, felt stigma would significantly mediate the relationship between MND-related stress (enacted stigma) and psychological distress. METHODS: Individuals with a diagnosis of MND were recruited internationally through social media and through various organizations and support services. Seventy-seven participants completed the online survey. RESULTS: Significant correlations were identified between social support, felt, and enacted stigma and psychological distress. Moderation analysis was not significant. However, the mediation analyses identified felt stigma as a significant mediator of the relationship between enacted stigma and psychological distress. A direct relationship between enacted stigma and stress (but not depression and anxiety) was also evident. CONCLUSIONS: A comprehensive approach to tackling stigma is important in ameliorating psychological distress for people with MND. Limitations of the current study are discussed, along with implications for clinical practice.

Psychological interventions for people with Parkinson's disease in the early 2020s: Where do we stand?

PURPOSE: To explore the heterogeneity of the literature on psychological interventions for psychological difficulties in people with Parkinson's disease (PD). METHODS: A scoping review was performed across five major databases (MEDLINE Complete, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library) up to June 2020. RESULTS: From an initial return of 4911 citations, 56 studies were included, of which 21 were RCTs. A relatively wide range of therapeutic models have been adopted with people with PD, from common therapies such as cognitive behavioural therapy (CBT) and mindfulness, to less frequent approaches, for example, acceptance and commitment therapy (ACT) and psychodrama. The clinical implications of the findings are discussed, and suggestions are provided for future research on intervention studies and key psychological outcomes. CONCLUSIONS: CBT appears to be effective in treating depression and sleep disorders in people with PD, while psychoeducation programmes alone should be avoided. The use of CBT to improve anxiety, quality of life, and impulse control, as well mindfulness-based interventions, should be undertaken with some caution because of insufficient research and inconsistent results. As we enter the new decade, more high-quality evidence is required for psychological interventions in people with PD in general and to corroborate preliminary positive findings on the adoption of less frequent approaches such as ACT. PRACTITIONER POINTS: Parkinson's disease is a progressive neurodegenerative condition associated with several psychological difficulties which be targeted by psychological interventions. Currently, cognitive behavioural therapy (CBT) can be recommended to treat depression and sleep disorders in people with Parkinson's, while psychoeducation alone should be avoided. Caution is advised regarding the use of CBT and mindfulness-based interventions to improve anxiety, quality of life, and impulse control. Further evidence is required for less common approaches, such as acceptance and commitment therapy, psychodrama, and EMDR.