Papers by Caroline Ellis-Hill
The Parelli vs. ISES Principles dataset
This dataset represents observation frequency scores (4 observers) for behaviours in 'An etho... more This dataset represents observation frequency scores (4 observers) for behaviours in 'An ethogram for Equitation Science First Principles of Horse Training.pdf' (see the'IPTEK ISES Principles Training Evaluation Kit' for methodological detail). The video materials of Parelli Natural Horsemanship are compared with the ISES (International Society for Equitation Science) First Principles of Horse Training.
Journal of Veterinary Behavior, 2016
The ISES training principles provide an excellent starting point for professionals and horse owne... more The ISES training principles provide an excellent starting point for professionals and horse owners. Currently, there does not seem to be an accepted protocol for evaluating horse training programs against the ISES principles. We suggest an approach to this, using Parelli Natural Horsemanship as our subject for evaluation. This initial pilot study (single-subject / n=1), trials two analytical methods, as applied to the current, video-based teaching materials from Parelli (latest 2015 DVD set). The two methods used were: (i) ethology-based video observation / logging and (ii) discourse analysis of the language used to teach. The ethology-based approach logged observed frequencies of the ISES principles. Inter Observer Reliability was assessed using ICC (Intra Class Correlation). Discourse analysis considered both the context and meaning of training language, to both the speaker and audience. Ethology-based results found all ISES principles present (1-10). High frequency counts for principles 2 & 10. Low counts for principles 5 & 7. Inter Observer Reliability (2 observers) was in the 'excellent' range (ICC=0.79). The high ICC value suggests that a minimal amount of measurement error was introduced by the independent observers, and therefore statistical power is not substantially reduced. At this stage (without an ICC value closer to 1.0 or further calibrating observers), increasing the evidence against random effects would require more extensive trials (p=0.16). The interim results from the discourse analysis show consistent congruence between the Parelli materials and the ISES principles, particularly in principles: 1, 2, 7, 9 and 10.
Recovery from conditions leading to illness/disability is often defined in terms of physical impr... more Recovery from conditions leading to illness/disability is often defined in terms of physical improvement; however, people themselves describe their own recovery as more than this alone: it is a returning to the life they led before their illness. These two approaches highlight a potential mismatch between the way we as health care professionals perceive our world (the observable) and the way the people we are caring for perceive their world (often hidden from us). In this presentation I will explore how we can access the subjective world of those who use our services by exploring the role of life narratives within rehabilitation. I will share ideas from research linked to life changes, sense of self, and agency which we can use to inform our practice and support people in their recovery and rehabilitation. Copyright of Journal of the Australasian Rehabilitation Nurses' Association (JARNA) is the property of Australasian Rehabilitation Nurses' Association (ARNA) Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Journal of Health Psychology, Sep 14, 2017
Epilepsy is a common but hidden disorder, leading to stigma in everyday life. Despite stigma bein... more Epilepsy is a common but hidden disorder, leading to stigma in everyday life. Despite stigma being widely researched, little is known about the impact of stigma for people with epilepsy within a sports and exercise setting. Using constructionist grounded theory, we explored the barriers and adaptations to exercise for people with epilepsy. Three focus groups (2-3 participants per group) and three semi-structured interviews were conducted (11 participants total). Stigma negatively impacted joining team sports, running groups, and disclosure to others. The effect of stigma was reduced by educating others about epilepsy, thus creating more awareness and understanding.
Epilepsy & Behavior, Oct 1, 2017
We would like to thank Dr. Vancini et al. regarding their letter (1) discussing the importance of... more We would like to thank Dr. Vancini et al. regarding their letter (1) discussing the importance of our recent research (2). Drawing attention to our findings of health professionals' lack of knowledge of the benefits of exercise for people with epilepsy as a barrier to exercise, Vancini et al. agreed that there needs to be an increase in the education of health professionals in relation to exercising with epilepsy (1, 2). Through acknowledging the lack of education of health professionals within this area (2, 3), further movements towards increasing health professionals' education on the benefits of exercise for people with epilepsy will be a positive gain toward decreasing barriers to exercise for people with epilepsy.
Brain Impairment, Mar 1, 2022
Family members living with relatives with severe Acquired Brain Injury (ABI) face many challenges... more Family members living with relatives with severe Acquired Brain Injury (ABI) face many challenges. Although this is recognised, service provision in the UK is poor and needs development. In order to support innovative service delivery for family members, we reflect on the research carried out by the first author using a new perspective -a lifeworld humanising approach in order to consider a) the dehumanising existential challenges facing family members of people living with severe ABI and b) what family members most value in service delivery presented in humanising terms. Following ABI, family members may enter a parallel lifeworld (feeling separate from 'usual' life as it flows by) and face fundamental existential challenges of isolation, loss of agency, dislocation, loss of meaning and loss of personal journey. Family members have reported that service providers who are highly valued are those who act as 'expert companions'. This role involves supporting families in some, if not all of the following a) reaching across into the lifeworld of the family member and appreciating and validating what they are facing, b) helping them make sense of their situation in terms which are meaningful to them and which they can explain to others, c) through ABI expertise, supporting their relative through knowing their interests and needs and adapting the environment to suit these to help their relative to 'settle ' and flourish, d) supporting family members to share their life experiencesdeveloping safe and trusting relationships, e) having a humane, positive, creative and for some, a humorous approach, f) being responsive to changing situations, g) being available to call during times of worry or crisis, h) help link with others and helpful networks. It is suggested that the role and approach of companion may help family members regain some sense of their own life and their wellbeing.
Brain Impairment, Sep 17, 2021
In this paper we critically explore the discourse of change post brain injury and challenge the d... more In this paper we critically explore the discourse of change post brain injury and challenge the dominant discourse of negative change which alone leaves little room for other perspectives to exist. These negative changes pose a considerable risk to the well-being of families who may benefit from engaging in richer accounts making room for a more coherent and connected sense of self and family post-injury. We explore how narrative approaches provide opportunities for all practitioners to expand their professional scripts and support families to move toward a future which is not dominated by a discourse of loss. While loss and negative change is an important, and very real consequence, of brain injury, focusing purely on stories of loss is life limiting for family members and can cause psychological distress. The life thread model is offered as a visible tool for all practitioners to engage with and use while working with families; providing a concrete focus for reflection and discussion of narratives relating to change which otherwise can feel quite abstract in everyday practice. We argue that one way we can humanise our professional practice is to sup port all practitioners to engage in a narrative understanding of family change following ABI.
Qualitative research highlights the challenges of developing new roles for physiotherapy in the optimisation of activity following stroke
Physiotherapy, Mar 1, 2010
1. Physiotherapy. 2010 Mar;96(1):75. Epub 2009 Dec 23. Qualitative research highlights the challe... more 1. Physiotherapy. 2010 Mar;96(1):75. Epub 2009 Dec 23. Qualitative research highlights the challenges of developing new roles for physiotherapy in the optimisation of activity following stroke. Demain S, Wiles R, McPherson K, Ellis-Hill C, Kileff J, Robison J. ...
Epilepsy & Behavior, May 1, 2017
Exercise has been shown to be a physiological and psychological benefit for people with epilepsy ... more Exercise has been shown to be a physiological and psychological benefit for people with epilepsy (PWE). However, barriers prevent many PWE from exercising safely and confidently. This research explored current perceived barriers to exercise and adaptation techniques used by PWE in order to maintain physical activity levels. Three focus groups (2-3 participants per group) and three semi-structured interviews were conducted (11 participants total). Constructive grounded theory was used to frame the study and analyse the findings, presenting new insight into the motivation, perceived barriers, and adaptation techniques used to exercise. The main motivator to maintain physical activity levels was the benefit of exercise on their physical and mental health. This was shown in an increase in mood, higher social interaction, and perceived improvement in overall physical health as a result of exercise. Current barriers to exercise included a fear of injury, lack of social support, and exercise-induced seizures (e.g., through overheating and/or high exercise intensity level). Adaptation techniques used were self-monitoring through the use of technology, reducing exercise frequency and intensity level, and exercising at certain times of the day. The importance of social support was shown to provide increased confidence and positive encouragement to exercise, contrasting with family and friends worrying for his/her safety and medical professionals requesting termination of some physical activities. These findings provide new insight into current adaptation techniques that are used and developed by PWE to overcome common barriers to exercise. These new additions to the literature can lead to further development of such techniques as well as examine current medical professionals' knowledge of the benefits of exercise for PWE.
Journal of Clinical Nursing, May 4, 2015
The aim of this paper is to explore how people live life successfully with Parkinson's disease an... more The aim of this paper is to explore how people live life successfully with Parkinson's disease and what contributed to the level of success. Objectives. To examine the level of success as defined by people with Parkinson's disease. To find what contributed to the level of success. Background. Self-care support has gained importance for supporting people with their chronic diseases including Parkinson's disease. Although self-care and life adjustments can improve patients' general well-being, it is unclear which approaches best facilitate positive adjustments to illness. Design. Semi-structured interviews with participants with Parkinson's disease. Methods. Eight participants living with Parkinson's disease for 2-16 years were recruited from a Parkinson's disease voluntary group in the UK. Interviews covered their perceived level of success and the factors which they perceived led to that success. Thematic analysis was used to analyse the data. Participants rated a high level of success in living with Parkinson's disease with an average personal rating 75/100 despite facing difficulties. Successful living was perceived to have taken place when people were either (1) able to return to their usual state of health or (2) considered themselves to be stable within a new/readjusted state of health. Aspects which were perceived to support positive psychosocial adjustment included a positive mindset, determination, acceptance of new challenges and family support. Parkinson's disease. It would be helpful for health care professionals to identify what constitutes a 'usual' life for that person and to support them to develop a positive mindset and acceptance of new challenges, drawing on the determination of the person as well as any available family support. Relevance to clinical practice. In supporting self-care, it is helpful to gain information about the subjective experience of living with Parkinson's disease including their perceived level of success at the time and what led to that perceived success for that person.
A Delphi Survey of Best Practice Occupational Therapy for Parkinson's Disease in the United Kingdom
British Journal of Occupational Therapy, Jun 1, 2003
This study was designed to determine the character of best occupational therapy practice for Park... more This study was designed to determine the character of best occupational therapy practice for Parkinson's disease in the United Kingdom. Two hundred and forty-two occupational therapists treating people with Parkinson's disease were sent a Delphi survey containing statements about best practice and asked to indicate their level of agreement with each statement. The second survey contained the same list of statements, with group levels of agreement from the first round for each statement. The respondents re-rated their answers and gave their opinion on the efficacy of various interventions. One hundred and fifty occupational therapists (62%) completed both rounds. Ninety-nine per cent of the respondents agreed that Parkinson's disease required lifelong provision of occupational therapy, within multidisciplinary teams, and that the social and psychological aspects of the disease were as important as the physical ones. The occupational therapists had confidence in many techniques for achieving physical, social and psychological goals. However, 40% of the respondents could not rate the efficacy of social and psychological techniques owing to a lack of knowledge. There was a high level of consensus nationally on the character of best practice occupational therapy for Parkinson's disease. The survey highlighted a need for more postgraduate training, especially in psychological techniques.
Exercise on prescription schemes for stroke patients post-discharge from physiotherapy
Disability and Rehabilitation, 2008
'Exercise on prescription&amp... more 'Exercise on prescription' (EoP) schemes run by fitness instructors in leisure centres in the UK have potential to promote continued rehabilitation and activity engagement post-discharge from stroke physiotherapy. This study explores the views of physiotherapists, stroke patients and fitness instructors about the appropriateness and acceptability of EoP schemes for stroke patients post-discharge from physiotherapy. This qualitative study collected data from stroke patients referred to EoP, fitness instructors and referring physiotherapists (n = 30). Data were transcribed and analysed thematically. Exploration of key themes within and between groups was made. Referral to EoP appears to alleviate some of the distress that patients and physiotherapists experience at physiotherapy discharge and provide an opportunity for physiotherapists to wean patients from physiotherapy. However, concerns about risks to patients because of fitness instructors' low levels of knowledge about stroke and the limited monitoring of exercisers were identified. Physiotherapists are likely to refer only the most able patients post-stroke to EoP. The study indicates that, in the light of limited health resources, EoP schemes have potential benefit for people post-discharge from physiotherapy. However, safety needs and the concerns of stroke survivors must be considered in EoP scheme development and management if they are to successfully help more people post-stroke maintain healthy levels of activity and fitness.
Journal of Advanced Nursing, Mar 1, 2009
Title. The use of conversational analysis: nurse-patient interaction in communication disability ... more Title. The use of conversational analysis: nurse-patient interaction in communication disability after stroke. Aim. This paper is a report of a study to explore how nursing staff and patients with aphasia or dysarthria communicate with each other in natural interactions on a specialist stroke ward. Background. Nursing staff often talk with patients in a functional manner, using minimal social or affective communication. Little nursing research has been carried out with patients who have communication difficulties. Conversational analysis, used in other healthcare settings, is a way to explore these interactions in depth in order to gain further understanding of the communication process. Method. An observational study was carried out in 2005 and the data were 35AE5 hours of videotape recording and field notes with 14 nursing staff and five patients with aphasia or dysarthria. The recordings were analysed using conversation analysis. Findings. Nursing staff controlled the conversations by controlling the topic and flow of conversations, creating asymmetry in all interactions. Patients had very little input because of taking short turns and responding to closed questions. These behaviours are related to the institutional context in which they occur. Conclusion. In rehabilitation, the focus for interaction may be thought to be patient goals, worries or plans for the future, but in this study nursing staff controlled the conversations around nursing tasks. This may be because they do not have the confidence to hold conversations with people with communication problems. Nursing staff need to receive training to reinforce communication rehabilitation programmes and to engage more fully with patients in their care, but also that a wider institutional culture of partnership is developed on stroke wards.
Going home to get on with life: Patients and carers experiences of being discharged from hospital following a stroke
Disability and Rehabilitation, 2009
In this paper we aim to develop the understanding of what constitutes a 'good' or... more In this paper we aim to develop the understanding of what constitutes a 'good' or 'poor' experience in relation to the transition from hospital to home following a stroke. Semi-structured interviews were carried out with 20 people and 13 carers within one month of being discharged from hospital following a stroke. Interviews covered views of mobility recovery and support from therapy and services. Interviews were transcribed verbatim, coded and analysed in depth in order to explore the discharge process. Participants described models of recovery, which involved a sense of momentum and getting on with their life. Discharge was successful if: (i) This sense of momentum was maintained, (ii) they felt supported, and (iii) they felt informed about what was happening. Discharge was seen as difficult when: (a) Momentum was perceived to be lost, (b) people did not feel supported, or (c) they felt in the dark about the plans or their recovery. The discharge experience could be improved by healthcare professionals understanding and exploring patients' individual models of recovery. This would allow professionals to: (a) Access patients concerns, (b) develop programmes addressing these, (c) correct misinterpretations, (d) keep people fully informed, and (e) share and validate the experience, to reduce their sense of isolation.
Resuming previously valued activities post-stroke: who or what helps?
Disability and Rehabilitation, 2009
In this article, we aim to develop the understanding of what helps or hinders resumption of value... more In this article, we aim to develop the understanding of what helps or hinders resumption of valued activities up to 12-months post-stroke. As part of a longitudinal study, semi-structured interviews were conducted with 19 people with stroke and eight informal carers 12-months post-stroke. Interviews covered ongoing effects of stroke, experience of trying to resume activities highlighted as important pre-stroke and factors that influenced progress. Interviews were transcribed, coded and analysed in depth to explore this aspect of the experience of living with stroke. Valued activities discussed related to employment; domestic and social roles including driving; hobbies, sports and socialising. Outcomes for individuals were influenced by: aspects of physical or cognitive disability; environmental factors; the adaptability of the individual; support from others and professional help. Inability to resume activities impacted on people's sense of self and quality of life, but some tolerated change and presented themselves as adaptable. This study indicates a long-term role for rehabilitation services such as: identifying the significance of different types of activities; providing access to support and treatment for debilitating symptoms such as fatigue and dizziness; addressing patients' emotional and behavioural responses to their condition; working with patients' wider social networks and where appropriate, supporting adaptation to a changed way of life.
A Survey of Current Occupational Therapy Practice for Parkinson's Disease in the United Kingdom
British Journal of Occupational Therapy, May 1, 2003
Little is known about the current character of occupational therapy practice for Parkinson's ... more Little is known about the current character of occupational therapy practice for Parkinson's disease in the United Kingdom. The study aimed to document this in order to inform plans for a future multicentre randomised controlled trial. Two hundred and forty-two occupational therapists that treated people with Parkinson's disease were sent a questionnaire regarding demographics, service organisation and therapy content. One hundred and sixty-nine occupational therapists (70%) responded. They had worked with people with Parkinson's disease for a median of 6 years and personally treated a median of 15 people with Parkinson's disease annually. Most (86%) were at senior grade or above; 87% worked in the National Health Service and 12% in social services. Forty per cent worked in specialist Parkinson's disease clinics. Most (79%) felt that they needed more specialist postgraduate training. Occupational therapists are employed in both health and social care settings. The character of the occupational therapy is often determined by the location in which it is provided. Current occupational therapy appears to focus on functional activities rather than on the wider social and psychological aspects of occupation. Many occupational therapists felt that they needed more specialist postgraduate training to treat people with Parkinson's disease effectively.
Exploring the views on the current and future use of functional electrical stimulation in spinal cord injury: a questionnaire development study
Introduction For nearly half a century FES has been used in the treatment and management of physi... more Introduction For nearly half a century FES has been used in the treatment and management of physical problems encountered by people with SCI, such as bladder and bowel control, pain relief, and improvement of movement. Despite intensive research and development, only a small percentage of people who potentially benefit use FES illustrating with the translation from research to clinical practice. Although there has been growing recognition and some research (e.g. 1, 2) exploring the user’s perspective, little research has been carried out within the UK which can be used to guide the future use of FES in SCI. Aim The aim of this study was to explore views of people with SCI, healthcare professions and researchers about the current and future use of FES. Methods The design of the study was qualitative employing a focus group approach. A total of eight focus groups lasting between 90 to 120 minutes were carried out with people recruited from a FES researcher’s network and spinal centres...
Collecting good quality data (quantitative, qualitative and mixed)
Movement and stagnation - the impact of the environment on perceptions of self, body and breathlessness in COPD
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Papers by Caroline Ellis-Hill