patients.doc - Patients perceptions of services and...

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Patients’ perceptions of services and preferences for care in amyotrophic lateral sclerosis. A review. Foley, Geraldine , Timonen, Virpi and Hardiman, Orla – all of Trinity College Dublin Published in Amyotrophic Lateral Sclerosis 2012 Acknowledgements: This work was funded by the Health Research Board (HRB) of Ireland Bios Geraldine Foley , BScOT, MScOT, is a HRB research fellow and a doctoral student at Trinity College Dublin, Ireland. Virpi Timonen , BA, MPhil, DPhil, is a professor of social policy and ageing at Trinity College Dublin, Ireland. Orla Hardiman , BSc, MBBCh, BAO, MD, is a professor of neurology and a HRB clinician scientist at Trinity College Dublin, Ireland, and a consultant neurologist at Beaumont Hospital Dublin, Ireland. 1
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Abstract Background : Service providers and service users often have different perspectives on health and social care services. Design: We have undertaken a systematic review of empirical data between 1988 to March 2011 relating to ALS service users’ perspectives on health and social care services. Forty-seven texts were extracted and a narrative synthesis conducted. Results: Few studies have explored ALS patients’ experiences in relation to their satisfaction with services. ALS patients expect dignified care but they are often dissatisfied with health care services and have unmet expectations of their care. Most studies of decision-making and preferences for care have focussed on end-of- life intervention. Various factors influence preferences for care from the service user perspective and people with ALS may adjust their use of services as they negotiate change. Conclusions: Further research on the timeliness of services to meet changing needs of service users is required. The service user experience of allied health care services prior to end-of-life care also warrants investigation. Service providers need to support people with ALS as they negotiate feelings of acceptance and independence. Research to identify the key parameters of the ALS patient experience of services is required. Key words: Review, services, care preferences, decision- making, multidisciplinary care 2
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Introduction The goal of health care services in ALS is to provide prompt and user orientated care based on clinical need (1). The role of health care professionals is to improve quality of life for service users and support them throughout the course of living with ALS (2). Models of care that are client-centred and responsive to the evolving nature of the condition are considered best practice for people with ALS (3). There is a general consensus that optimal care in ALS should comprise services that support physical, psychological, social and existential needs of service users and their carers (4-6). The ALS service user has a pivotal role in the caring process and his or her experiences of care are central to the care approach in ALS. However, despite research on the benefits of multidisciplinary care in ALS (7-9) few studies have explored the delivery of service from the user’s perspective.
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