"A young person in an old person's body": a reflexive thematic analysis of the experience of living with young onset Parkinson's disease.

Background: People with young-onset Parkinson's disease (YOPD), a term for those diagnosed with Parkinson's disease (PD) under the age of 60, face unique challenges compared to those diagnosed with PD later in life. A better understanding of the lived experience of those with YOPD is essential to delivering bespoke rehabilitation and improving quality of life.

Purpose: To provide insight into the emotional and social lived experience of individuals with YOPD.

Alexithymia and illness perceptions in persons with multiple sclerosis and their partners.

Illness perceptions (IPs) encompass opinions regarding the nature, severity and curability of a disease. The aim of this cross-sectional study was to investigate the association between alexithymia and IPs among persons with multiple sclerosis (PwMS) and their partners, as well as within the dyads composed of PwMS and partners. PwMS referred to the Multiple Sclerosis Center of the University Hospital "Policlinico-San Marco" from 11th August 2021 to 7th January 2022 and their partners completed a battery of questionnaires, including the Toronto Alexithymia Scale-20 and the Illness Perception Questionnaire Revised.

Navigating the social world with neck dystonia: An interpretative phenomenological analysis.

Neck dystonia is a neurological condition, characterised by involuntary movements of the neck muscles, causing twisted head positions and often pain and head tremor. Ten participants with neck dystonia were interviewed and the data was analysed using an interpretative phenomenological analysis approach. Three themes were constructed: (1) dismissed by others for having an unfamiliar condition; (2) negotiating a new social identity; and (3) managing the stigma of a visible condition.

Maintaining psychological well-being when living at risk of Huntington's disease: An interpretative phenomenological analysis.

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.

Coping with Tourette's syndrome: a meta-ethnography of individual and family perspectives.

Objective: This systematic review and meta-ethnography aimed to examine how children, adults and families cope with Tourette's syndrome (TS).

Methods: 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.

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.

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.

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.

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.

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.

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.

"I Feel Like I Work Full-Time for Parkinson's": A Longitudinal Interpretative Phenomenological Analysis of the Experiences of Parkinson's Informal Caregivers during COVID-19 in England.

While the direct effects of COVID-19 caused widespread global suffering and death, the indirect impacts-via public health preventative measures and a reduction in health and social care services-were also devastating for many. More recently, it has also become increasingly apparent that such measures have had disproportionate effects, exacerbating existing health inequalities. For caregivers of individuals with chronic illness, the effects have been marked and particularly so for informal caregivers of individuals with complex neurodegenerative conditions such as Parkinson's.

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.

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.

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.

Illness perceptions and outcome in multiple sclerosis: A systematic review of the literature.

According to Leventhal's self-regulation model, ill people construct personal representations of their disease, namely illness perceptions, which impact their coping strategies and the emotional response to their condition. Since these representations develop in the social environment, the individuals' perceptions may also be related to the opinions of their caregivers. This systematic review aims at synthesising and critically appraising literature pertaining the relationship between illness perceptions and outcome in persons with multiple sclerosis and their caregivers.

Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington's Disease: A Descriptive, Evidence-Based Model.

Huntington's disease (HD) is an inherited, life-limiting neurodegenerative condition. People with HD experience changes in cognitive, motor and emotional functioning, and can also, mainly at later stages, exhibit behaviours that professionals and carers might find distressing such as hitting others, throwing objects, swearing or making inappropriate comments. While clinical formulation (an individualised approach used by mental health professionals to describe an individual's difficulties) is a helpful tool to conceptualise patients' wellbeing, a specific formulation framework has not yet been developed for HD.

Third wave cognitive behavioural therapies for people with multiple sclerosis: a scoping review.

Purpose: Multiple sclerosis (MS) is a chronic condition linked to a wide range of psychological difficulties. While traditional cognitive behavioural therapy has been studied extensively with people with MS, much less is known about more recent "third wave" approaches.

Methods: A scoping review was carried out by performing a systematic search across MEDLINE Complete, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library up to January 2022.

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.

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.

Impacts of COVID-19 lockdowns on frailty and wellbeing in older people and those living with long-term conditions.

Lockdowns and social distancing have been important and successful strategies to limit the spread of the coronavirus disease 2019 (COVID-19) virus. However, excess deaths related to non-COVID-19 causes have been reported, suggesting issues around availability and use of health services, particularly for people with conditions needing ongoing medical support. In addition, evidence indicates that a range of age-related diseases and frailty are impacted by physical activity and social engagement, both limited in lockdown situations.

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-medical healthcare professionals' involvement in BBN to newly diagnosed patients with motor neurodegenerative conditions in the UK.

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.

'It's a double whammy': A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19.

Objectives: The purpose of this study was to explore the experiences of individuals with Parkinson's through the theoretical lens of illness uncertainty during the first UK full lockdown period (March-June 2020) put in place due outbreak of the COVID-19 pandemic.

Methods: Individual semi-structured interviews were carried out via telephone in May 2020 with 10 individuals with Parkinson's (six men and four women) recruited from Parkinson's UK. Interviews were recorded and transcribed verbatim, and thematic analysis was adopted to analyse the resulting data.