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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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. 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. 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. [ABSTRACT FROM AUTHOR]

The aim was to synthesise the current qualitative literature on the impact of Parkinson's on the couple relationship, including individual and dyad studies. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. Self-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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. Breaking 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. [ABSTRACT FROM AUTHOR]

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?" 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. 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. The results highlight the need to empower patients to self-manage their illness, mitigating the effects of Parkinson's disease and supporting future wellbeing. Individual 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. [ABSTRACT FROM AUTHOR]

The purpose of our study was to investigate factors which predicted first appointment attendance within a traumatic brain injury (TBI) neuropsychology outpatient department. 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. 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. 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. Identifying 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. Interpretative phenomenological analysis was used to analyse data gathered through semi-structured interviews. Eight participants were recruited via a UK-based dystonia charity. 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. 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. Dystonia 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. [ABSTRACT FROM AUTHOR]

Purpose: This research study aimed to explore the lived experience of individuals with essential tremor. Method: This study was qualitative in nature and informed by interpretative phenomenological analysis methodology. Semi-structured interviews were conducted with a relatively homogenous sample of nine individuals with a diagnosis of essential tremor. Results: Three major themes were constructed: "But they often look at you like you're some drug addict or smackhead": Social attitudes to difference; "I just couldn't do it anymore": The restrictive nature of essential tremor; and "You've got to cope; you've got to learn to fight different ways": Rescuing some normality amid physical deterioration. Conclusion: This study offers much needed experiential understanding and interpretation of one of the most prevalent neurological conditions with regard to the emotions associated with specific day-to-day experiences, the restrictions placed upon everyday practicalities and the coping strategies employed. This study has highlighted the need for health care professionals to provide individuals with information regarding psychological support, and a need for more public awareness campaigns centred around essential tremor. Judgements of others and being unable to conform to social norms results in social embarrassment and anxiety for people with essential tremor. Public awareness campaigns could help reduce the stigma experienced by people with essential tremor. The emotional response to the physical limitations of essential tremor can also be complex and particular to the individual and signposting to psychological support may be helpful. [ABSTRACT FROM AUTHOR]

Primary purpose: Child acquired brain injury has significant impact on the family, including siblings. This study aimed to explore siblings' experiences of their relationship with their brother or sister with acquired brain injury in order to make recommendations for health professionals working with this population. Research design: Semi-structured interviews were conducted with five siblings of children with acquired brain injury aged between 9 and 12 years and analyzed using interpretative phenomenological analysis. Results: The analysis resulted in four themes: (i) Coping with "a nightmare that you live"; (ii) Disconnection from family relationships; (iii) My sibling is different but "still the same underneath all this thing"; and (iv) Changing togetherness. Conclusions: The siblings in this study experienced a high level of distress with the near loss of their brother or sister. This was followed by difficulty in adjusting to the physical and psychological changes in their injured sibling and the impact on their sibling role and relationship. The changes were experienced alongside disruption to family relationships. Important clinical implications include the inclusion of siblings in their injured sibling's care and the provision of information and support for this group. Siblings of children with an acquired brain injury experience significant challenges while trying to adapt to their changing sibling relationship and feelings of disconnection with their family. This study highlights a need to work systemically with families of childhood brain injury and recognize siblings' important role in their family unit and therefore involve them in their brother/sister's care and rehabilitation. This study also highlights a need to support siblings to cope with the trauma and provide information to validate and understand their experience. [ABSTRACT FROM AUTHOR]

AbstractObjectiveMethodsResultsConclusionThis systematic review and meta-ethnography aimed to examine how children, adults and families cope with Tourette’s syndrome (TS).A systematic search of four databases was completed in October 2022. Sixteen papers met the inclusion criteria and were synthesised using Noblit and Hare’s (1988) meta-ethnographic approach.Three themes were constructed: redefining the self and social identity, controlling the visible presentation of Tourette’s syndrome, and challenging the narrative.Findings indicate that coping involves the need to integrate TS with identity, to exert control over tics and to challenge the misrepresentations of TS in wider society. A supportive environment provided by parents and friends enables individuals to feel proud that they can control their tics, and this allows for the positive integration of TS into identity. Raising awareness at a societal level through educational campaigns is important when aiming to improve coping with a stigmatised condition. Further research is recommended, for example, to understand how common co-occurring conditions, such as attention deficit hyperactivity disorder, impact coping. [ABSTRACT FROM AUTHOR]

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

Objectives: This study sought to investigate how people who had tested positive for the Huntington's disease (HD) gene mutation understood and experienced psychological distress and their expectations of psychological therapy. Design: A qualitative methodology was adopted involving semi‐structured interviews and interpretative phenomenological analysis (IPA). Method: A total of nine participants (five women and four men) who had opted to engage in psychological therapy were recruited and interviewed prior to the start of this particular psychological therapeutic intervention. Interviews were transcribed verbatim and analysed using IPA whereby themes were analysed within and across transcripts and classified into superordinate themes. Results: Three superordinate themes were developed: Attributing psychological distress to HD: ‘you're blaming everything on that now’; Changes in attributions of distress over time: ‘in the past you'd just get on with it’; and Approaching therapy with an open mind, commitment, and hope: ‘a light at the end of the tunnel’. Conclusion: Understandings of psychological distress in HD included biological and psychological explanations, with both often being accepted simultaneously by the same individual but with biomedical accounts generally dominating. Individual experience seemed to reflect a dynamic process whereby people's understanding and experience of their distress changed over time. Psychological therapy was accepted as a positive alternative to medication, providing people with HD with hope that their psychological well‐being could be enhanced. Practitioner points: People with the Huntington's disease gene mutation have largely biomedical understandings of their psychological distress. This largely biomedical understanding does not, however, preclude them for being interested in the potential gains resulting from psychological therapy. The mechanisms of psychological therapy should be explained in detail before therapy and explored along with current attributions of distress. [ABSTRACT FROM AUTHOR]

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

Objectives:Due to the lack of existing literature, the current research explored experiences of same-sex partner bereavement in women over the age of 60. Method:Semi-structured interviews were conducted with eight women. Transcripts were analysed using interpretative phenomenological analysis. Results:Three themes were identified which elaborated the experiences of older women who had lost a same-sex partner: (1)being left aloneencapsulated feelings of isolation and exclusion; (2)navigating visibilitycentred on how homophobia led to a lack of recognition of the women's grief; and (3)finding new places to be authenticrelated women's need for new relationships in which they could be themselves.The findings indicate that existing models of partner bereavement may provide useful frameworks when seeking to understand the experiences of older women who have lost their same-sex partners. Conclusion:The findings indicate that in addition to the experiences of partner bereavement noted in research with heterosexual widows, older women who lose same-sex partners may face particular challenges, which can impact upon psychological well-being and adjustment to loss. These challenges appear to result from past and current homophobic and heterosexist attitudes within the UK culture. A range of interventions at individual, group, health service, and societal levels may be beneficial in improving the psychological well-being of older women who lose a same-sex partner. [ABSTRACT FROM PUBLISHER]

Parents are perhaps the best placed individuals to comment upon their child’s life story, including early life experiences, transitions and their child’s needs. However, research has rarely focussed on the views of parents of young people who have committed serious offences. This research aimed to explore parents’ opinions of which factors may have led to their child becoming involved with the criminal justice system. Interviews were undertaken with six parents who were asked to narrate their child’s life journey into offending behaviours. The data were then analysed using narrative analysis techniques, and a shared story was created which incorporated the main transitional stages in the children’s journeys, as seen by the parents. The findings suggest that it is not just the child but the whole family who have been in a state of distress throughout the child’s life. Systemic and environmental factors are argued to contribute to this distress, and the use of diagnosis for this population is critically evaluated. The research highlights a life story in which the child’s and family’s distress remains unheard and therefore unresolved. Clinical implications for working with this population are discussed. [ABSTRACT FROM AUTHOR]

Aim: Parkinson's disease (PD) is a neurodegenerative disease, most usually associated with motor problems, although psychological difficulties are also commonly experienced. In the UK, Parkinson's disease nurse specialists (PDNSs) are often the key health professionals involved in the management of PD, with regards to both the motor and psychological aspects of the disease. This qualitative study sought to investigate the experiences of PDNSs in recognising and managing psychological difficulties in people with PD. Design: Five female participants--four PDNSs and one neurology nurse specialising in PD--from the north west of England took part in the study. Participants were all female and had been in their roles for between 2.5 and 14 years. The study used a qualitative methodology aimed at providing a detailed account and analysis. Method: Individual semi-structured interviews were conducted and subsequently analysed using thematic analysis. Results: Five overarching themes were developed summarising participants' experiences. These included understanding the causes of psychological difficulties; accessing psychological support; the recognition and management of psychological difficulties; the improvement of psychological care and the personal resilience of the nurse specialists. Conclusions: The specialist nurses were closely involved in the assessment and support of anxiety and depression of people with PD but concerns were expressed that there were limited resources for further help and management. [ABSTRACT FROM AUTHOR]