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Primary Progressive Multiple Sclerosis, quality of living, dignity in dying and the ‘real’ experts. An exploratory study.

Primary Progressive Multiple Sclerosis, quality of living, dignity in dying and the ‘real’ experts. An exploratory study.

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An essay for the 2011 Undergraduate Awards Competition by Niall Rynne. Originally submitted for Social Research at University College Cork, with lecturer Mr. Pat Leahy in the category of Social Studies
An essay for the 2011 Undergraduate Awards Competition by Niall Rynne. Originally submitted for Social Research at University College Cork, with lecturer Mr. Pat Leahy in the category of Social Studies

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Published by: Undergraduate Awards on Aug 29, 2012
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05/13/2014

 
 
RESEARCH PROPOSAL
Primary Progressive Multiple Sclerosis, quality of living, dignity in dying
and the ‘real’ experts. An exploratory study.
 Abstract:
„I‟ve been to many consultants and experts and at each visit I ask them to tell me something Idon‟t know. I have lived with PPMS for 15 years and this has never happened.‟
 (Donnacha Rynne was diagnosed PPMS in 1995)Our nerve cells are protected by myelin, when damaged by the onset of MultipleSclerosis (MS) electrical impulses traveling up and down the nerves are blocked. As a result,the nerves are unable to carry their signals effectively, leading to symptoms of MS. What weare interested in here are the people who live with MS, their quality of living, how theyunderstanding dying and the information available to them and who they perceive to be the
„real‟ experts on the disease.
 This proposal is part of the University College Cork, Bachelor of Social Work second yearcurriculum. This proposal is the assignment component for module SS 2217 which focuseson the development of a research proposal. The module is intended to introduce students tocurrent debates and
contribute to the student‟s professional development in research
capabilities.
 
 2
Introduction:
MS is a chronic inflammatory, demyelization disease of the central nervous system,which starts in the majority of patients with a relapsing / remitting MS course, which afterseveral years of disease duration converts into a progressive disease. Progressive MS is thecentral topic of this research proposal. Symptoms of MS include motor and sensorydisturbances, impaired vision, cognitive impairment, muscle weakness and paralysis,incontinence, fatigue, numbness and balance problems. There are four categories of MS:1.
 
Benign MS2.
 
Relapsing MS3.
 
Secondary Progressive MS4.
 
Primary Progressive MS(www.mssociety.com)This proposals aim is to investigate the fourth category primary progressive MS (PPMS).Unlike other types of MS, those living with PPMS never have remission or relapses andrarely if ever benefit from any approved medications designed to reduce relapses. Thisexploratory study will explore the lives of those living with PPMS as it relates to their qualityof living (QOL), attitudes about dying and perceptions of who
the „real‟ experts
are. What is
understood here by „real‟ experts are thos
e engaged in the care of those living with PPMSfrom the Para
 – 
medical professions; general practitioners, neurologists, physiotherapists,occupational therapists, community workers and social workers.The aims of the proposal are outlined below:
 
Explore the nature of PPMS and available information on the disease.
 
 3
 
Explore the social impact on the lives of those living with PPMS.
 
Explore the perceptions of who are the „real‟ experts for those living with PPMS, their 
families, carers, and support networks.
 
Explore available information on dying for those living with PPMS.A
recent conference entitled „Joint Conference on Primary – 
Progressive MS focuses on
unmet needs‟ which took place
in Dallas Texas USA in 2008, found,
“The number one issue identified
by everyone was a serious lack of information about thisform of MS. People with PPMS and their families asked for more informatio
n of every sort”,
(Schneider, 2008, p62).
Research Context:
Those who take part in the study will do so from within a contextual framework mostsuited to them. The researcher aims to minimize any disturbance to the participants byvisiting them at locations most convenient to them. It is also envisioned that visits would bemade at a time when members of their care teams are present this would enable theresearcher to conduct Delphi interviewing with the care team and those with PPMS as agroup, this will be looked at later in the proposal
Epidemiology:
Women are more likely them men to develop MS. However 50% of men with MS willdevelop PPMS, tend to have more significant symptoms and tend to be more disabled.Figure 1. Below gives an epidemiological over view of the number of people with MS acrossEurope. (Source atlasofms.org)

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