Fiona Eccles

• DClinPsy, DPhil
• Lecturer at Lancaster University

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 amo...

Objectives: The review aims to explore the relationship between dispositional mindfulness (DM) and wellbeing, including positive psychological wellbeing and poor physical and mental health in first responders, including police, fire and emergency medical personnel. Methods: A systematic review was conducted, with a search of four academic databases...

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 qua...

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...

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...

Purpose: The lockdown and social distancing measures introduced as a result of the COVID-19 pandemic impacted the ability of people with Parkinson's to engage in normal health management practices. This led to documented reductions in psychological wellbeing. The aim of the present review was to identify factors associated with the psychological w...

Background For Huntington’s Disease (HD) gene expansion carriers, anxiety is a common experience and is associated with worsened HD symptoms, lower quality of life and increased suicidality. Despite anxiety being a clinical priority, no evidence-based accessible psychological intervention is currently available. Aim To adapt the well-evidenced met...

Background Living with Huntington’s disease (HD) not only has impacts on the person with the condition, but also on other family members and friends, who may become informal carers. It is important to understand the predictors of both negative and positive psychological outcomes for carers to enable risk factors to be identified and better support...

Background Living at risk of a genetically inherited disease can be a challenging experience causing psychological distress as well as physical health problems and therefore it is important to understand how people maintain wellbeing. Little is known about how people manage their psychological wellbeing while living at risk of Huntington’s disease...

Background Huntington’s disease is a genetic neurodegenerative condition with physical, cognitive and psychological impacts. Children of a parent with the condition have a 50% chance of carrying the gene expansion and developing the condition themselves and may grow up watching a parent develop symptoms of the condition. Aims This systematic revie...

Background Previous research has investigated predictors of quality of life (QoL) for carers of people with Huntington’s disease (HD) such as demographics, caring characteristics and illness-related variables of the person with HD. However, the investigation of psychosocial variables has been limited. Here we use data from Enroll-HD to investigate...

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...

Background 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. Methods...

Objective Ambulance staff are at increased risk of negative wellbeing outcomes, though there is a lack of research into their wellbeing. This study aims to explore the relationship between emotional intelligence and self-compassion, two factors related to positive wellbeing in other populations, and the professional quality of life and psychologica...

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...

Zusammenfassung Hintergrund Die gefühlte Kontrolle von Menschen mit Parkinson-Erkrankung spielt eine große Rolle für ihre Lebensqualität. Simpson et al. entwickelten eine für die Parkinson-Erkrankung spezifische Skala der gefühlten Kontrolle namens Parkinson’s UK Scale of Perceived Control (PUKSoPC). Wir stellen in dieser Arbeit eine interkulturel...

Background: Minds & Movement is a project led by Lancaster University along with the Faculty of the Psychology of Older People and Division of Clinical Psychology of the British Psychological So- ciety to produce the first UK national guidance on psychological approaches for people with motor neurodegenerative disorders. Objective: The aim of this...

Background: Psychological interventions for people affected by Huntington’s disease are in their infancy. People with HD commonly experience anxiety and, within the general population, a significant evidence base exists for talking therapies such as guided self-help. GUIDE-HD is based on cognitive behavioural and acceptance and commitment therapy,...

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, w...

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 symp...

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 bee...

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 in...

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...

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, esp...

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 peo...

Background: Huntington’s disease (HD) is an adult-onset genetic neurodegenerative condition, involving 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 affect quality of life, worsen other HD symptoms,...

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...

Background Anxiety is one of the most common psychological difficulties reported among people with HD (pwHD) and has been shown to negatively impact on quality of life and everyday functioning. Expert guidelines recommend psychological therapy as the first treatment offered to people experiencing anxiety in early-stage HD. Guided self-help, an evid...

Background Psychological distress is common among people with Huntington’s disease (HD), including gene expansion carriers who have not yet received a clinical diagnosis. In later stages, people with HD (pwHD) can sometimes express their psychological distress with aggressive, risky, or disinhibited behaviours which others might find challenging. C...

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 opinion...

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 inappropriat...

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 ac...

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 internalisa-tion of negative stereotypes (felt stigma). Self-compassion may protect against the impact of stigma. This study aimed to investigate the relat...

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...

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 medica...

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...

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 1 healthcare professionals' involvement...

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...

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 20...

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...

Background Although Huntington’s disease (HD) can cause a wide range of psychological difficulties, no review has ever been carried out on the range of psychological interventions adopted with this population. Aims To scope the literature on psychological interventions for psychological difficulties in people affected by HD. Methods A systematic...

Background Huntington’s disease (HD) causes declines in motor and cognitive function as well as psychological difficulties. As it’s an inherited disease, many see parents or family members affected. Yet little is known how people in the pre-manifest stage manage knowing they will develop the disease Aims This paper presents an in-depth exploration...

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...

This document was produced as part of Lancaster University’s Minds and Movement project funded by the British Psychological Society. Guidance on psychological interventions for psychological difficulties in individuals with Huntington’s disease, Parkinson’s disease, motor neurone disease, and multiple sclerosis was produced for the British Psycholo...

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 possibil...

The aim of this guidance is to provide evidence-based recommendations for providing psychological support to individuals living with the following four motor neurodegenerative conditions: Huntington’s disease, Parkinson’s disease, motor neurone disease, and multiple sclerosis. It focuses on psychological interventions for specific psychological out...

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’ persp...

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 init...

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 init...

Background: Although Huntington’s disease (HD) can cause a wide range of psychological difficulties, no review has ever been carried out on the range of psychological interventions adopted with this population. Objective: To scope the literature on psychological interventions for psychological difficulties in people affected by HD. Methods: A sys...

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 individu...

Objective Motor neuron disease (MND) is a rapidly progressive neurodegenerative condition with no known cure. MND can affect every aspect of a person’s life and has been associated with a wide range of psychological difficulties, which can occur from pre-diagnosis through to the condition’s later stages. However, very little research has been condu...

Background: Huntington's disease (HD) is an inherited neurodegenerative condition which affects movement, coordination and cognitive functioning. Psychological difficulties are commonly experienced; however, psychological interventions have been little researched with this population. We investigated the feasibility of conducting a randomised cont...

Background There is no clear understanding of what causes and maintains nonepileptic attack (NEA) disorder (NEAD), or which psychological therapies may be helpful. The relationships between variables of psychological inflexibility: experiential avoidance (EA), cognitive fusion (CF), mindfulness, and key outcome variables in NEAD: somatization, impa...

Objective Delivering a life changing diagnosis can be a distressing experience for patients and a challenging task for professionals. Diagnosis delivery can be especially difficult for individuals with neurodegenerative diseases such as motor neurone disease (MND), multiple sclerosis (MS) and Parkinson’s disease (PD). This review aims to scope the...

Introduction Stigma is a known correlate of well-being for many neurological conditions. Perceived control is also an important variable in models of adaptation to living with a health condition. The purpose of this study was to investigate whether the perception of control mediates the relationship between stigma and well-being in people with Park...

Graphical Abstract to Chalfont et al 2020

The urgent need for innovative approaches to dementia treatment that are acceptable, effective and affordable underlies this research. Growing evidence supports 'integrative medicine' as a potential treatment approach aligned with and including conventional medicine. However, success will depend on addressing barriers, recognising needs of diverse...

This paper builds upon our previous pilot study using a telephone triage service for traumatic brain injury (TBI) referrals. We have investigated effects of this new service on waiting times, attendance rates and use of clinical time during the first year of implementation. Waiting times reduced, 36 clinical hours were saved, and contrary to our pr...

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-...

Purpose: To scope the literature concerning irritability in Huntington's disease to determine whether or not irritability is a valid and meaningful construct within this population. Method: A scoping literature review was conducted based on findings from a search of five databases (Academic Search Ultimate, PsycINFO, CINAHL, Scopus and Web of Sc...

Background: Avoidance is the active process of trying to escape from or not experience situations, places, thoughts, or feelings. This can be done through behavioral or cognitive strategies, or more broadly, a combination of both, utilized in an attempt to disengage from private experiences referred to as experiential avoidance (EA). Avoidance is...

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 tr...

Background: Chronic obstructive pulmonary disease (COPD) is a respiratory condition causing accumulation of mucus in the airways, cough, and breathlessness; the disease is progressive and is the fourth most common cause of death worldwide. Current treatment strategies for COPD are multi-modal and aim to reduce morbidity and mortality and increase...

Background Research suggests that people with epilepsy (PWE) are more likely to experience depression and anxiety than the general population. Given the adversity associated with the condition, resilience may also be important. However, to date, resilience has been largely overlooked in the epilepsy literature. Self-compassion has been widely assoc...

Background Psychological difficulties such as low mood, anxiety and irritability are common in people with the Huntington’s disease (HD) gene, both pre-manifest and manifest. Whilst, medication can sometimes alleviate these difficulties it is not always effective or preferred. Mindfulness based cognitive therapy (MBCT) may offer an alternative or a...

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-structure...

Introduction: Perceived control is an important concept in understanding adjustment to chronic conditions such as Parkinson's. While generic measures have been used to measure the construct in Parkinson's, no Parkinson's-specific scale currently exists. This study outlines the initial development and further validation of a free-to-use scale, the...

Objectives: The aim of this review was to identify quantitative correlates, predictors, and outcomes of stigma in adults with epilepsy living in Western countries. Methods: To identify relevant literature, four academic databases (PsycINFO, CINAHL, PubMed, and Scopus) were systematically searched using key terms related to stigma and epilepsy....

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 wh...

This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: To assess the effects of single-inhaler LABA/LAMA combinations versus placebo on clinically meaningful outcomes in patients with stable COPD. © 2018 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.

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 n...

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 a...

Objective. To systematically review and then synthesize the qualitative literature on the experience of parenting a child with an acquired brain injury (ABI). Design. Systematic literature review and meta-synthesis Methods. A systematic search of the literature was conducted in four databases. Papers which met the inclusion criterion were assessed...

Trans people experience high rates of attempted suicide and suicidal ideation. No study to date has collated the various findings concerning correlates of trans suicide. This systematic review aimed to summarize the available data and provide recommendations based on this evidence. Articles were included if they were published before November 2016,...

Background: A key aim of asthma care is to empower each person to take control of his or her own condition. A personalised asthma action plan (PAAP), also known as a written action plan, an individualised action plan, or a self-management action plan, contributes to this endeavour. A PAAP includes individualised self-management instructions devise...

This metasynthesis explores how non-heterosexual women experience informal social support. A systematic literature search was conducted to identify papers for inclusion, following which Noblit and Hare's (1988) meta-ethnographic approach was adopted to synthesize the findings of 16 papers. Four themes were derived: (a) disconnection from family lif...

Being diagnosed with a chronic illness such as Parkinson's disease (PD) can have a considerable psychological impact on a person's life. However, this has been under explored and so it is unclear what support may be most beneficial at this time. This study therefore explored personal experiences of being diagnosed with PD. Six participants were int...

Objective: The aim of this qualitative meta-synthesis was to search and then synthesise family caregivers' experiences of providing care to individuals with Parkinson's disease (PD). Method: A systematic search resulted in the identification of 11 qualitative studies. Noblit and Hare's seven-stage approach was used to provide a higher-order inte...

Background Huntington’s disease (HD) is a chronic neurodegenerative disease which causes problems with movement, coordination, cognitive functioning, and is often also associated with a number of emotional difficulties. Currently, little evidence exists of the acceptability and efficacy of psychological approaches for people with HD. Given the domi...

Background Many people with the Huntington’s disease (HD) gene, both pre-manifest and manifest, experience low mood, anxiety and other psychological difficulties. Medication can alleviate these difficulties to some extent, but it is not effective for everyone, and is not always the preferred option. Psychological interventions may provide an altern...

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 psychologica...

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 elab...

Objectives: Deceptive practice has been shown to be endemic in long-term care settings. However, little is known about the use of deception in dementia care within general hospitals and staff attitudes towards this practice. This study aimed to develop understanding of the experiences of general hospital staff and explore their decision-making pro...

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...

Objectives: The optimal care of people with dementia in general hospitals has become a policy and practice imperative over recent years. However, despite this emphasis, the everyday experience of staff caring for this patient group is poorly understood. This review aimed to synthesise the findings from recent qualitative studies in this topic publ...

Organisational-change experiences of eight clinical psychologists working in the NHS were captured. Three themes revealed the challenges they experienced and how their knowledge and skills have helped them understand, cope with, and respond to change.

The aim of this literature review was to develop a better understanding of links between loneliness, social isolation and sight loss, with a view to indicating possible improvements to policy and practice and areas for further research.

The present research aimed to determine if partners' involvement in the rehabilitative care of people who have undergone an amputation predicted their wellbeing using a quantitative, cross-sectional design. Partners of people with an amputation were contacted through amputation-related advocacy groups and asked to complete an online questionnaire....