Biography
I hold a PhD, MSc, and a BSc.OT from Trinity College Dublin, the University of Dublin. I am an Assistant Professor in the Discipline of Occupational Therapy, School of Medicine, TCD. I am a past recipient of a prestigious PI-based Health Research Board (HRB) Research Fellowship for healthcare professionals and I have been a HRB Research Fellow at the School of Social Work & Social Policy, TCD (2011-2014). I worked as a clinical specialist occupational therapist (2006-2011) and senior occupational therapist (2001-2006) in neurology. My research interest is in life-limiting illness focused primarily on stakeholder need, care preferences and decision-making in:palliative care; end-of-life care; neuropalliative care, neurorehabilitative care; and cancer palliative care. Some of the leading journals that I have published in include Social Science & Medicine, Health Services Research, Palliative Medicine, Qualitative Health Research, and ALS & Frontotemporal Degeneration. 70% of my journal publications have been published in Q1 journals and a further 20% in Q2 journals. I have presented my work in multiple fora including for instance, ALS/MND International Symposia, and the World Congress of the European Association of Palliative Care. I work in inter-disciplinary contexts and I have collaborated on a HRB Interdisciplinary Capacity Enhancement (ICE) research programme. I am currently co-investigator on a large HRB award aimed at mapping out care needs in Parkinson's Disease in Ireland. I am internationally recognised in my field. I am Editorial Board member of BMC Palliative Care. I have been an expert reviewer for Cancer Research UK, the EU Joint Programme - Neurodegenerative Disease Research (JPND), the Ministry of Health Singapore, the Netherlands Organisation for Health Research and Development, and for the Italian Foundation for ALS Research. I supervise both Masters and PhD students. I teach and coordinate multiple modules in the Discipline of Occupational Therapy, School of Medicine including all research modules in the discipline's programme. I am also coordinator of the MSc Cancer Survivorship at TCD and I teach the qualitative research methods module on this programme. By invitation, I have designed and delivered teaching on qualitative research design for PhD and postdoctoral researchers. I also teach on the MSc in Neurology and Gerontology at the Royal College of Surgeons Ireland (RCSI), and on the MSc in Clinical Speech and Language Studies at TCD. I am a member of the European Association for Palliative Care (EAPC), the Palliative Care Research Network of the All Ireland Institute of Hospice and Palliative Care (AIIHPC), and Dementia Network Research Ireland (DRNI). I welcome PhD applications and inquiries in my research domains, on topics situated in or relating to life-limiting illness, palliative care, neurodegenerative disease, cancer care, neuro-palliative care, neurorehabilitation, and end-of-life care.
Publications and Further Research Outputs
Peer-Reviewed Publications
Doing Grounded Theory: Key steps for design, data collection and analysis in, A. Ruth, A. Wutich and H. Russell Bernard , The handbook of teaching qualitative and mixed research methods: A step-by-step guide for instructors, London, Routledge, 2023, [Foley G]
McCauley R, Ryan K, McQuillan R, Foley G., Patient and caregiver reciprocal support: Impact on decision making in specialist palliative care, Journal of Pain and Symptom Management, 2023
McCauley R, Ryan K, McQuillan R, Selman LE, Foley G., Supportive relationships between patients and family caregivers in specialist palliative care: A qualitative study of barriers and facilitators, BMJ Supportive & Palliative Care, 2023
McCauley R, Ryan K, McQuillan, Foley G., Mutual support between patients and family caregivers in palliative care: A qualitative study, Palliative Medicine, 2023
O'Shea E, Rukundo A, Bennett KE, Foley G, Wilkinson T, Timmons S., Healthcare experiences of health service access and use for people with Parkinson's disease in Ireland: A national survey, Health and Social Care in the Community, 2023, 2023, p1 - 23
Dane K, Foley G, Wilson F., 'Body on the line: Experiences of tackle injury in women's rugby union - a grounded theory study, British Journal of Sports Medicine, 2023
Mulcahy Symmons S, Ryan K, Aoun SM, Selman LE, Davies AN, Cornally C, Lombard J, McQuillan R, Guerin S, O'Leary N, Connolly M, Rabbitte M, Mockler D, Foley G., Decision-making in palliative care - patient and family caregiver concordance and discordance: systematic review and narrative synthesis, BMJ Supportive & Palliative Care, Online First, 2022
Dane K, Foley G, Hendricks S, Wilson F., "It's always the bare minimum": A qualitative study of players' experiences of tackle coaching in women's rugby union, Journal of Science and Medicine in Sport, 26, (2), 2023, p149 - 155
Foley G., Conducting qualitative interviews with people who have life-limiting illness - Moving forward in the context of COVID-19, 2023, -
McCauley R, McQuillan R, Ryan K, Foley G., A qualitative study of mutual support between patients and family caregivers in palliative care, Palliative Medicine, 18th World Congress of the European Association for Palliative Care, Rotterdam, June 15-17 2023, 37, (S1), 2023, pp113
Foley G., Patient and family caregiver concordance and discordance in palliative care, 28th International Moving Points in Palliative Care Annual Conference. Innovation not Stagnation: Making the Evidence Count, Dublin, March 22, 2023
McCauley R, McQuillan R, Ryan K, Foley G., Barriers to and facilitators of mutual support between patients and family caregivers in palliative care, Irish Association for Palliative Care 22nd Annual Education and Research Seminar, Dublin, Feb 02 2023, 2023
Senet J, Foley G., L'accès à la rééducation pour les enfants paralysés cérébraux dans la région du Pacifique Ouest, une revue narrative de la littérature, Kinésithérapie, la Revue, 9èmes Journées Francophones de Kinésithérapie, Rennes, 29 Mar-02 April 2023, 23, (255), 2023, pp81 - 82
Mulcahy Symmons S, Ryan K, Mockler D, Aoun SM, Davies AN, Selman LE, Lombard J, Guerin S, Cornally N, Connolly M, McQuillan R, O'Leary N, Rabbitte M, Foley G., A systematic review of concordance and discordance between people with advanced illness and their caregivers in palliative care, Palliative Care & Social Practice, 7th Public Health Palliative Care International Conference, Bruges, Sept 20-23 2022, 16, 2022, pp9 - 10
Dane K, Simms C, Horgan A, van Dyk N, Hendricks S, Cullen P, Foley G, Wilson F., "Body on the line": Experiences of tackle injury and performance in women's rugby union - a grounded theory study, International Festival Sports, Exercise & Medicine Conference, Pretoria, Sept 29-Oct 02, 2022
McMenamin R, Grant C, Murphy N, Foley G., Perceptions of physical activity among patients undergoing chemotherapy in an oncology day ward: A qualitative study, 12th International Cancer Conference, Dublin, Oct 13-14, 2022
McMenamin R, Foley G. Grant C., Physical activity and barriers to exercise among patients undergoing chemotherapy attending an oncology day ward: A qualitative study, Irish Society of Chartered Physiotherapists Annual Conference, Online, Dublin, Oct 14, 2022
McCauley R, McQuillan R, Ryan K, Foley G., Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis, Palliative Medicine, 35, (5), 2021, p875 - 885
McCauley R, McQuillan R, Ryan K, Foley G., A systematic review with narrative synthesis on mutual support between patients and family caregivers in palliative care, Palliative Medicine, 17th World Congress of the European Association for Palliative Care, Online, Oct 6-8 2021, 35, (Suppl. 1), 2021, pp49 - 49
Foley G., Video-based online interviews for palliative care research: a new normal in COVID-19?, Palliative Medicine, 35, (3), 2021, p625 - 626
Foley G, Timonen V, Conlon C, Elliott O'Dare C., Interviewing as a vehicle for theoretical sampling in grounded theory, International Journal of Qualitative Methods, 20, 2021, p1 - 10
Power M, Arafa N, Wenz A, Foley G., Perceptions of fatigue and fatigue management interventions among people with multiple sclerosis: A systematic literature review and narrative synthesis, International Journal of Therapy and Rehabilitation, 28, (6), 2021, p1 - 21
Foley G., Grounded Theory - Generating evidence for practice and delivery of care, 2021, -
Conlon C, Timonen V, Elliott O'Dare C, O'Keeffe S, Foley G., Confused about theoretical sampling? Engaging theoretical sampling in diverse grounded theory studies, Qualitative Health Research, 30, (6), 2020, p947 - 959
Rabbitte M, McKeon M, Boylan J, Leahy A, Kearney C, Foley G., Designing and developing technologies for palliative care to improve quality of life, Palliative Medicine, 11th World Research Congress of the European Association for Palliative Care, Online, Oct 7-9 2020, 34, (Suppl. 1), 2020, pp238 - 238
Foley G., COVID-19: Changing Contexts for Health and Social Care Professionals in Palliative Care, 2020, -
Foley G., Complexities in palliative and end-of-life care for people with assistive technology needs., All Ireland Institute of Hospice and Palliative Care - Designing and Developing Technologies for Palliative Care Seminar, Dublin, June 12, 2019, All Ireland Institute of Hospice and Palliative Care
Foley G., The supportive relationship between palliative patients and family caregivers, BMJ Supportive and Palliative Care, 8, (2), 2018, p184 - 186
Timonen V, Foley G, Conlon C., Challenges when using Grounded Theory: A pragmatic introduction to doing GT research, International Journal of Qualitative Methods, 17, (1), 2018, p1 - 10
Foley, G., Re-configuring the supportive relationship between patients and family caregivers in palliative care, Manchester, Jan 23, 2018, Supportive and Palliative Care Research Group, University of Manchester
BMC Palliative Care, London, Biomed Central Springer Nature, [Associate Editor], 2018
Foley G, Hynes G., Decision-making among patients and their family in ALS care: A review, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 19, (3-4), 2018, p173 - 193
Foley G., How do patients and family in MND interrelate in the decision-making process? Reconfiguring the supportive relationship between patients and family caregivers in palliative care, 16th Kaleidoscope International Palliative Care Conference, Dublin, May 30-31, 2018
Hogden A, Foley G, Henderson RD, James N, Aoun SM., Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach, Journal of Multidisciplinary Healthcare, 10, 2017, p205 - 215
Foley G, Hynes G., A systematic review of decision making among patients and their family in ALS care, Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, 28th International Symposium on ALS/MND, Boston, Dec 8-10 2017, 18, (Suppl. 2), 2017, pp6 - 7
Foley G., Burdened by obligation: Recognising the caring roles of people with motor neurone disease, Palliative Medicine, 30, (10), 2016, p981 - 982
Foley G, Timonen V, Hardiman O., "I hate being a burden": The patient perspective on carer burden in amyotrophic lateral sclerosis, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17, (5-6), 2016, p351 - 357
Between control and surrender in terminal illness in, (eds) J.F. Gubrium, T. A. Andreassen, and P.K. Solvang , Reimagining the Human Service Relationship, New York, Columbia University Press, 2016, pp123 - 139, [Foley, G. and Timonen, V.]
Foley G., Control and surrender in human services interaction: The relational contexts of living with motor neurone disease, BSA Medical Sociology Group Annual Conference, Birmingham, UK, Sept 7-9, 2016
Foley G, Timonen V., Using grounded theory method to capture and analyze health care experiences, Health Services Research, 50, (4), 2015, p1195 - 1210
Foley G., Cognitive and behavioural impairment in ALS: What now for the ALS patient perspective?, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 16, (5-6), 2015, p423 - 424
Foley G, Timonen V, Hardiman O., The impact of family on decision-making in ALS care: The patient perspective, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 26th International Symposium on ALS/MND, Orlando, Dec 11-13 2015, 16, (Suppl. 1), 2015, s12
Foley G, Timonen V, Hardiman O., Exerting control and adapting to loss in amyotrophic lateral sclerosis, Social Science & Medicine, 101, 2014, p113 - 119
Foley G, Timonen V, Hardiman O., Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective, Qualitative Health Research, 24, (1), 2014, p67 - 77
Foley G, Timonen V, Hardiman O., Understanding psycho-social processes underpinning engagement with services in motor neurone disease: A qualitative study, Palliative Medicine, 28, (4), 2014, p318 - 325
Foley G., Loss and wellbeing in amyotrophic lateral sclerosis: Challenging the consensus, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 15, (3-4), 2014, p161 - 162
Foley G, Timonen V, Hardiman O., Understanding psycho-social processes that underpin how people with ALS make decisions about care, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 25th International Symposium on ALS/MND, Brussels, Dec 5-7 2014, 15, (Suppl. 1), 2014, s122-123
Foley G, Timonen V, Hardiman O., Why and how do people with motor neurone disease (MND) engage with allied healthcare professionals? Findings from a qualitative study on the service user experience of healthcare services, Physical Therapy Reviews, Rehabilitation and Therapy Research Society 9th Annual Conference, Belfast, June 21 2013, 19, (1), 2014, p47
Foley G, Timonen V, Hardiman O., How and why people with amyotrophic lateral sclerosis engage with healthcare services: A qualitative study of service users' experiences in Ireland, Palliative Medicine, 8th World Research Congress of the European Association of Palliative Care, Lleida, June 5-7 2014, 28, (6), 2014, p619
Foley G., Understanding healthcare experiences among people with motor neurone disease, 13th Kaleidoscope International Palliative Care Conference, Dublin, May 28-29, 2014
Foley G, Timonen V, Hardiman O., The meaning of loss for people with amyotrophic lateral sclerosis: Impact on decision-making in care, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 24th International Symposium on ALS/MND, Milan, Dec 6-8 2013, 14, (Suppl. 2), 2013, s72
Foley G., Understanding how people with MND engage with healthcare services, A Guide to Management of MND - National Multidisciplinary Education and Research Conference, Beaumont Hospital Dublin, Nov 22, 2013
Foley G, Timonen V, Hardiman O., Life stage and perceptions of ageing in motor neurone disease, Irish Journal of Medical Sciences, 61st Annual and Scientific Meeting of the Irish Gerontological Society, Dublin, Sept 20-21 2013, 182, (Suppl. 6), 2013, s291
Galvin M, Courtney E, Foley G, Staines A, Normand C, Timonen V, Perry I, McQuillan R, Tobin K, Connolly S, Hardiman O., Developing a care pathway for amyotrophic lateral sclerosis: Methods and principles, European Care Pathways Conference, Glasgow, June 20-21, 2013
Foley G, Timonen V, Hardiman O., Acceptance and making decisions about care in amyotrophic lateral sclerosis: The influence of parenthood and age, European Journal of Palliative Care, 13th World Congress of the European Association of Palliative Care, Prague, May 30-June 02 2013, Abstracts, Hayward Medical Communications, 2013, p119
Foley G, Timonen V, Hardiman O., Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: A review, Amyotrophic Lateral Sclerosis, 13, (1), 2012, p11 - 24
Foley G, Timonen V, Hardiman O., Experience of services as a key outcome in amyotrophic lateral sclerosis (ALS) care. The case for a better understanding of patient experiences, American Journal of Hospice and Palliative Medicine, 29, (5), 2012, p362 - 367
Foley G., The complexity of care in amyotrophic lateral sclerosis, Amyotrophic Lateral Sclerosis, 12, (3), 2011, p160 - 161
Foley G, Timonen V, Hardiman O., A systematic review of ALS patients' perceptions of services and decision making in care, Amyotrophic Lateral Sclerosis, 22nd International Symposium on ALS/MND, Sydney, Nov 30-Dec 02 2011, 12, (Suppl. 1), 2011, s13
Foley G, The importance of multidisciplinary care in the management of neurological conditions. In "The Future for Neurological Conditions in Ireland. A Challenge for Healthcare; an Opportunity for Change", Dublin, Neurological Alliance of Ireland, 2010, p74 - 75
Foley G, Murray D, Moloney R., Occupational therapy and physiotherapy at an Irish ALS clinic: An audit to review care links with community services, The Allied Professionals Forum of the 20th International Symposium on ALS / MND, Berlin, Dec 7, 2009
Foley G., Occupational therapy in progressive neurology: A rehabilitative approach, British Journal of Occupational Therapy, 71, (7), 2008, p308 - 310
Foley G., The effect of coping strategies on QoL for people with motor neurone disease, Long Term Neurological Conditions - Implications for Occupational Therapy (College of Occupational Therapists Specialist Section Neurological Practice), Newcastle, UK, Oct 2-3, 2008
Foley G, O'Mahony P, Hardiman O., Perceptions of quality of life in people with ALS: effects of coping and health care, Amyotrophic Lateral Sclerosis, 8, (3), 2007, p164 - 169
Foley G., What are the care needs for people with motor neurone disease and how can occupational therapists respond to meet these needs?, British Journal of Occupational Therapy, 70, (1), 2007, p32 - 34
Occupational therapy and post polio syndrome in, editor(s)Post Polio Support Group , Post polio syndrome. Management and treatment in primary care, Dublin, Post Polio Support Group, 2007, pp9 - 17, [Foley, G. and Nolan, R.]
Foley G., Neurorehabilitation for people with progressive neurological disorders: What are the challenges for occupational therapy services?, MS Ireland and the Neurological Alliance of Ireland Healthcare Professional Conference - Rehabilitation and Progressive Neurological Disorders, Sligo, Sept, 2007
Foley G., Neurorehabilitation in neurodegenerative disease: Advancing occupational therapy intervention', Association of Occupational Therapists of Ireland Annual Conference, Tullamore, May, 2007
Foley G, O'Mahony P, Hardiman O., Perceptions of quality of life for persons with motor neurone disease/amyotrophic lateral sclerosis: a qualitative study, Physical Therapy Reviews, Rehabilitation and Therapy Research Society 2nd Annual Conference, Dublin, May 26 2006, 11, (3), 2006, p209
Foley G., The meaning of quality of life for patients with MND/ALS: A qualitative investigation, Association of Occupational Therapists of Ireland Annual Conference, Dublin, May 17-19, 2006
Foley G., Quality of life for people with motor neurone disease: A qualitative study, The Allied Professionals Forum of the 16th International Symposium on ALS / MND, Dublin, Dec 7, 2005
Foley G., Measuring quality of life (QoL) for people with amyotrophic lateral sclerosis / motor neurone disease: Implications for occupational therapy practice, Association of Occupational Therapists of Ireland Annual Conference, Letterkenny, March 2-4, 2005
Foley G., Quality of life for persons with motor neurone disease. A consideration for occupational therapists, British Journal of Occupational Therapy, 67, (12), 2004, p551 - 553
Foley G, Neely F., Cognitive impairment in amyotrophic lateral sclerosis. A consideration for occupational performance, British Journal of Occupational Therapy, 66, (9), 2003, p414 - 418
Cahalane E, Kidney D, Foley G, Long J, McLoughlin M, Reid I, McArdle D, Zhou L, Barrett A, Hardiman O., Profile of patients attending the neurorehabilitation unit in a tertiary referral centre, European Journal of Neurology, 7th EFNS Congress, Helsinki, Aug 30-Sept 02 2003, 10, (Suppl. 1), 2003, s38
Cahalane E, Kidney D, Foley G, Long J, McLoughlin M, McArdle D, Reid I, Barrett A, Zhou L, Hardiman O., Utilisation of rehabilitation services by MS patients attending a tertiary referral hospital, European Journal of Neurology, 7th EFNS Congress, Helsinki, Aug 30-Sept 02 2003, 10, (Suppl. 1), 2003, s100-101
Foley G., Cognitive dysfunction in motor neurone disease, Association of Occupational Therapists of Ireland Annual Conference, Killarney, March 26-29, 2003
Foley G, McDermott M., Cognition in multiple sclerosis. A literature review, Irish Journal of Occupational Therapy, 31, (1&2), 2001, p47 - 52
Foley G., Client-centred practice for assistive technology users, Irish Journal of Occupational Therapy, 30, (1), 2000, p2 - 7
Foley G., A workshop on standardised assessments used by occupational therapists in physical settings, Irish Journal of Occupational Therapy, 28, (2), 1998, p26 - 29
Research Expertise
Description
My research is situated in domains of life-limiting illness, and is focused primarily on stakeholder need, decision-making, and preferences for care in: palliative care; end-of-life care; neurodegenerative disease; and neurorehabilitation. My research is interdisciplinary focused and highly substantial in the context of my already transformative work that has mapped out and explained key processes that underpin engagement with healthcare services for people with motor neurone disease. My research has expanded into the wider field of life-limiting illness focused on factors (micro to macro) that directly impact on the decision-making process between patients and family caregivers in palliative care. I have been awarded as primary investigator prestigious funding from Trinity College to support my research on the novel concept of mutual support between patients and family caregivers in palliative which will inform development of psychosocial interventions for patients and family caregivers in palliative care. I collaborate productively in my field and beyond my discipline. I am a co-investigator on a Health Research Board (HRB) award focused on mapping out care needs in Parkinson's disease. My role is to co-investigate experiences of services for people with Parkinson's disease and their priorities for service provision. This work will be used to transform Parkinson's disease service planning in Ireland and will have relevance to other systemic healthcare contexts. I have already collaborated successfully on a large HRB Interdisciplinary Capacity Enhancement (ICE) research programme focused on mapping out palliative needs, services and outcomes in ALS. I have been a visiting researcher at the Supportive and Palliative Care Research Group, University of Manchester, UK. I have also worked closely with colleagues in the Social Sciences to produce original contributions to qualitative research methodology and I have an international profile as a scholar with high-levels of qualitative research expertise including in the Grounded Theory method.Projects
- Title
- Patient and family caregiver treatment decision-making in specialist palliative care
- Funding Agency
- Trinity College Dublin
- Date From
- 2023
- Title
- Patient and family caregiver decision-making in palliative care
- Funding Agency
- Trinity College Dublin
- Date From
- April 2022
- Date To
- March 2023
- Title
- Mutual support between patients and family caregivers for decision making in palliative care
- Funding Agency
- Irish Research Council
- Date From
- March 2021
- Date To
- December 2021
- Title
- Mapping Parkinson's Disease needs and services in Ireland to inform service planning
- Summary
- Although the National Clinical Programme (NCP) for Neurology's Model of Care included a pathway for Parkinson's Disease (PD), and the number of people with Parkinson's (PwP's) is increasing significantly annually (it will double globally from 2015 to 2040), services for PwP's have not had any significant healthcare investment in recent years. Anecdotally, Irish PD services fall well below internationally recommended standards for staffing resources. This not only affects the quality of life of PwP's, it also leads to avoidable hospital admissions, with high associated costs and morbidity. The Parkinson's Association of Ireland has lobbied to improve PD services in Ireland. However, there is no reliable estimate of the current prevalence of PD in Ireland, and of either the services available to PwP's or the quality/user-appraisal of these services. This research project aims to support national and local PD service planning by three linked work packages. The first maps the prevalence of PD and service availability for PwP's, across each of the nine Community Healthcare Organisation regions in Ireland, to highlight mismatches between population needs and service provision. The second develops quality indicators for Irish PD services and assesses existing services against these indicators, to demonstrate where extra resources (e.g. education/training, staff numbers or mix, etc.) are needed to provide a quality service. The final work package explores the experience of PwP's with respect to services they receive, and their priorities for service provision. The applicant team involves key stakeholders in the Health Service Executive (HSE), advocacy/support groups, and service users and providers. Together, this data will support the Department of Health/HSE to plan future PD services in Ireland, on a region by region basis. It will support local PD services to improve the quality of their service, and will support ongoing advocacy for health care that meets the needs of PwP's in Ireland. Lead Investigator: Dr Suzanne Timmons (UCC). Co-investigators: Dr Siobhan Fox (UCC), Dr Geraldine Foley (TCD), Dr Eilis O'Reilly (UCC), Prof Tim Lynch (Dublin Neurological Institute), Prof Orla Hardiman (TCD), Prof Kathleen Bennett (RCSI), Patrick Browne (NUIG), Paula Gilmore (Parkinson's Association of Ireland), Dr Diarmuid O'Shea (St. Vincent's University Hospital).
- Funding Agency
- Health Research Board
- Date From
- 2019
- Date To
- 2022
- Title
- Support exchange between patients and family caregivers in palliative care
- Summary
- The family caregiver in palliative care has traditionally been conceptualised as the provider of support within the patient-family caregiver dyad. Questions pertaining to informal caregiving in palliative care have been shaped by the assumption that the provision of support between people with life-limiting illness and their family caregiver is predominantly unidirectional, that is, from family caregiver to patient. Little is known about the reciprocal dimensions of caregiving between patients and family caregivers in palliative care, and how their mutually supportive roles may impact on their decision-making in care. Through qualitative methods, this project will generate an explanatory framework for 'support exchange' between patients and family caregivers in specialist palliative care. People with life-limiting illness and their family caregivers will be recruited from a regional-based hospice service. Participants will be purposively sampled for similarities and differences and then sampled based on emerging findings in the data. Semi-structured interviews will focus on key characteristics and dimensions of support exchange between patients and family caregivers in specialist palliative care. The data will be analysed to identify key actions or interactions through which patients and family caregivers exchange support and the conditions that are likely to foster and/or limit support exchange. The findings will be organised into core categories and analysis of the relationship between these categories will generate an explanatory framework for patient-family caregiver support exchange in specialist palliative care. Principal Investigator: Dr Geraldine Foley
- Funding Agency
- Trinity College Dublin
- Date From
- 2019
- Date To
- 2023
- Title
- Living and dying with amyotrophic lateral sclerosis: A population-based analysis of palliative needs, services and outcomes in non-malignant terminal illness
- Summary
- The project will examine the palliative needs, services and outcomes for those living with motor neurone disease (MND) in Ireland. International best practice recommends early palliative care intervention from time of diagnosis of MND. However, in Ireland access to palliative care is limited and the clinical indications for specialist palliative intervention are not clearly defined. The aim of this project is to identify the deficits in current palliative management of people with MND by comparing existing practice with best practice guidelines, and to develop a structured framework based on a multidisciplinary approach towards the palliative management of people with MND. Prospective longitudinal clinical, health service, quality of life and burden of illness data relating to the patient journey of 100 patients in Ireland with MND and their caregivers will be available for analysis. Access to and utilisation of palliative care services will be assessed and comparison between current management and best practice will be evaluated. A multifaceted care framework will be developed and piloted with health care professional and users. Service providers' perspective will be captured and the perceived utility of the service evaluated from a patient and carer perspective. On completion the project will provide a road map for palliative services intervention for MND, and will assist in the future development of palliative services in Ireland. (Role: Collaborator) Lead-PI: Prof. O Hardiman, Co-PIs: Prof. C Normand, Prof. I Perry, Prof. A Staines, Prof. V Timonen, Dr. R McQuillan
- Funding Agency
- Health Research Board
- Date From
- 2012
- Date To
- 2016
- Title
- Understanding and Use of Healthcare Services by People with Amyotrophic Lateral Sclerosis / Motor Neurone Disease
- Summary
- Amyotrophic lateral sclerosis (ALS), otherwise known as motor neurone disease (MND) is one of the most common neurodegenerative diseases of the central nervous system. Care needs are both complex and challenging and services provided should be user-orientated to meet care needs. However, research has shown that there may be a discrepancy between service users' and providers' understanding of services which can directly influence how service users make decisions about and experience care. There is a dearth of evidence on how those with ALS understand their services and engage with care. Equally, there is a dearth of research on how those with ALS make decisions about care. Hence, the aims of this study are to identify how ALS service users understand, decide on, use and experience health care services. A grounded theory approach will be used in order to explore participants' experiences of care. Theoretical sampling of ALS patients will be undertaken whereby participants are selected on the basis of emerging themes within the data. Data collection will consist of qualitative interviews with ALS service users. Data from interviews will be analysed using open, axial and selective coding to develop an understanding and explanation of participants' experiences of health care services. The research findings will be organised into core categories or themes; analysis of the relationship between categories will enable the formulation of a substantive theory about how ALS service users understand and use services. Conclusions will consist of recommendations about how best to provide services for people with ALS/MND in the context of service user experience and decision making. Principal Investigator: Dr Geraldine Foley
- Funding Agency
- Health Research Board
- Date From
- 2011
- Date To
- 2014
- Title
- A qualitative investigation of quality of life for people with amyotrophic lateral sclerosis
- Summary
- Few studies have explored the 'meaning' of life experiences for people with amyotrophic lateral sclerosis (ALS). This study aimed to identify the meaning of QoL for people with ALS, and to consider how their experience of health care affected perceived wellbeing, using qualitative methods. People with ALS were purposively sampled from the Irish ALS population-based register and interviewed on two occasions. Interviews were audiotaped and transcribed verbatim. Data were analysed using inductive content analysis. Themes that emerged included: importance of faith, search for control, importance of dignity, desire to maintain identity, importance of family, a sense of loss, importance of altruism and support, fighting amyotrophic lateral sclerosis, and appreciation of life. All participants felt that professional services contributed to their well-being. QoL was individual and multi-dimensional, and was shaped by the cognitive and behavioural strategies participants used to cope with ALS. The findings of this study further our understanding of how people with ALS adapt to terminal illness.
- Funding Agency
- Beaumont Hospital Dublin
- Date From
- September 2003
- Date To
- August 2005
Recognition
Representations
Steering Group Member - Eliciting Preferences for Valued Outcomes of Treatment Among Persons Living with ALS, PAVE Center, University of Maryland, USA
Expert reviewer for the Netherlands Organisation for Health Research and Development (ZonMw) - Grant call
External examiner - The University of Melbourne
National Research Ethics Committee for Clinical Trials of Investigational Medicinal Products (NREC-CT-A)
Mentor - Teaching, Research and Academic Mentoring Scheme (TRAMS). Trinity College Dublin (School of Medicine) in partnership with Scottish-based Universities
TCD School of Medicine Athena Swan Committee - Self-Assessment Team (SAT)
Coordinator & Course Committee member MSc Cancer Survivorship, TCD
BMC Palliative Care (Associate Editor/Editorial Board Member)
Junior Academic Progressions Committee, TCD
Expert reviewer for EU Joint Programme Neurodegenerative Disease Research (JPND). Grant call for Multinational research projects on Health and Social Care for Neurodegenerative Diseases
Faculty of Health Sciences Research Ethics Committee, TCD (Deputy Chair 2019 -)
Palliative Care Research Network (PCRN) of All Ireland Institute of Hospice and Palliative Care (AIIHPC)
Expert reviewer for National Medical Research Council (NMRC), Ministry of Health, Singapore - Grant calls
Postgraduate Curriculum Committee - Discipline of Occupational Therapy, School of Medicine, TCD
Primary Assessor & Coordinator - Mature student applicants (Discipline of Occupational Therapy Undergraduate Programme)
Expert reviewer for Cancer Research UK (Marie Curie Cancer Care) - Grant call
Please see https://publons.com/researcher/1405061/geraldine-foley/peer-review/. I have been a reviewer for the following journals: Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, Qualitative Health Research, Palliative Medicine, Health Services Research, Health & Social Care in the Community, Journal of Palliative Care, European Journal of Cancer Care, Journal of Pain and Symptom Management, BMC Palliative Care, Disability & Rehabilitation, American Journal of Hospice & Palliative Medicine, International Journal of Qualitative Methods, BMC Neurology, BMC Health Services Research, BMJ Open, Plos One, BMC Women's Health, and Patient Preference & Adherance.
International Scientific Committee of the Italian Foundation for ALS Research (AriSLA) Ice Bucket Call Challenge for Assistive Technology Projects (2015) and member of the expert consensus group for the research call.
Committee member of the Rehabilitation & Therapy Research Society (RTRS)
Treasurer, Rehabilitation and Therapy Research Society (RTRS)
Occupational Therapy Clinical Specialist Competencies Working Group. Therapy Project Office, Health Service Executive
National Neuroscience Steering Group (Health Service Executive, Ireland) - Strategic Review of Neurology and Clinical Neurophysiology Services in Ireland (2006-2007)
Irish Motor Neurone Disease Association (IMNDA) Board member
Association of Occupational Therapy of Ireland (AOTI) Neurology Advisory Group
Validation Committee of the Association of Occupational Therapists of Ireland (AOTI)
Association of Occupational Therapists of Ireland (AOTI) Council
Awards and Honours
Dean's Research Award
Provost's Project Award
HRB Research Fellowship for Healthcare Professionals
Irish Gerontological Society (IGS) President's medal - IGS Conference
Multiple Sclerosis (MS) Society UK Measuring Success Winner Award (Category - Outstanding Initiative Outside of the UK)
Memberships
Palliative Care Research Network (PCRN) of the all-Ireland Institute of Hospice and Palliative Care (AIIHPC)
European Association for Palliative Care (EAPC)
CORU - Regulating Health and Social Care Professions
Dementia Network Research Ireland (DNRI)
Association of Occupational Therapists of Ireland (AOTI)
Rehabilitation and Therapy Research Society, Ireland (RTRS)