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A project examining the Needs of Sufferers & Carers
This project was done as part of the Final Year of the Nursing course at the University of Surrey by a friend of mine, Karin West ("Dinks"). Thanks to Dinks for letting me publish it.....
1.0 Abstract
This research is intended to be treated as a pilot study into the needs of Sufferers of
Parkinson's Disease and their Carers. It sets out to identify the self-perceived needs by
means of anonymously completed questionnaires. The study aims to highlight the
areas of need in order that a greater awareness of the disease may develop and further
research be undertaken in an attempt to fulfil the needs.
As physical disabilities develop and worsen the lives of both Sufferer and Carer
become increasingly restricted. Parkinson's Disease has a far-reaching and interwoven
effect on all areas of life; social, financial, physical, psychological and personal.
Areas of need which appear to be especially neglected include; dysphagic and
dysphasic difficulties; the poor contribution and involvement of nurses both in hospital
and the community; the poor availability and utilisation of respite care and the
disruption caused by hospitalisation. Social life is severely curtailed and the activities
pursued become limited. Little financial difficulty is apparent, possibly due to the
subjects sampled being from more affluent areas. There is an apparent satisfaction with
knowledge and understanding, although this is mainly acquired through self-directed
enquiry.
It therefore appears that there are needs in the lives of Sufferers and Carers which
could be rectified. The services and facilities to undertake this task are in existence, yet
they need to be made more aware of the Sufferers and their Carers, and be capable of
co-ordinating their resources and facilities. This may ensure that the Sufferers and
Carers are equipped to cope with the disease; obstacles being removed where possible
to enhance the quality of life.
6.0 Introduction
As the predominance of chronic illness increases in relation to acute infectious
diseases, the paucity of research and literature in this area is becoming uncomfortably
apparent.
The Royal College of Physicians (1986) noted that planners and service providers have
identified that patients and family lack information about expectations, priorities, and
self-assessment; and about problems associated with everyday life whilst living with a
long term illness. Indeed Glazier (1973) says of the North American medical system
"it is much less effective in delivering the kind of care needed today... the kind of care
needed at a time when chronic illness predominates."
In his forward for the "Health of a the Nation", William Waldegrave (1991) states the
prime role of health authorities is an explicit responsibility for the health of their
residents. Their job as "champion of the people" involves: Firstly, assessing the state
of health of the people they serve. Secondly obtaining the services necessary to ensure
effective action is taken to maintain good health, prevent and treat ill health,
rehabilitate people to good health and provide support and care for those who are
disabled, chronically ill or dying. Thirdly, ensuring the quality and effectiveness of the
services the residents use.
It thereby appears important to enhance the understanding of what it means to live
with a chronic illness, such as Parkinson's disease, and to draw out some of the
implications for response by service providers (Anderson & Bury 1958). A greater
awareness of the health care team of the frustrations, limitations and needs created by
Parkinson's disease would, one supposes, lead to an improved understanding and
hence an improved standard of care offered (Waddel 1990). Put another way, the
development by members of the health care team of expertise concerning the realities
of living with Parkinson's disease would enhance the recognition of areas of need, and
ensure appropriate assistance was offered.
10.0 Conclusion
10.1 Conclusion of Results
The physical disabilities imposed by Parkinson's Disease are numerous, with
associated restrictions on the lives of the Sufferers and equally on the lives of the
Carers. Restrictions include financial, social, physical and personal limitations.
The age of disease onset falls in line with current research, although quite a few are
younger than 60 years old.
Psychologically the results were slightly ambiguous. Yet there is sufficient data to
suggest there are psychological needs which remain unfulfilled. For example, there are
not always people to talk to, social interactions become altered and restricted and they
do not consider themselves as active as they would like.
It appears that hospital admission is a stressful and intimidating experience. Often
causing a disruption in self-care and self-manipulation of medication.
Nurses, both in hospital and the community, offer very little positive help. This
remains an untapped reserve of support and if utilised could be of great benefit to
Sufferers and Carers alike. A more comprehensive awareness of the needs of people
with chronic and terminal illnesses could be included in the nurse training schedule in
an attempt to provide a better service of care for Sufferers and their Carers. For
example nurses could introduce Sufferers as contact was noted as beneficial.
Although offering benefits to both Sufferers and Carers a respite care facility is made
known and available to only very few.
Dysphagic, dysphasic, eating and dribbling problems are badly dealt with and cause
much distress and even death.
There is a vast array of physical disabilities experienced by the Sufferers. Many
require the use of aids and appliances to help them. Provision of which could help
enhance their quality of life.
The majority of respondents acquired their knowledge though self-directed enquiry
illustrating a need for professionals to inform newly diagnosed Sufferers. Knowledge
of the disease is an important aspect of control. It allows a degree of anticipation
which research has shown to alleviate stress and assist coping.
There appears to be little financial difficulty experienced but this may be due to the
sample of Sufferers used in the study.
The majority of Sufferers have been seen by neurologists.
Carers themselves are not without health problems, yet they persevere with their
caring.
It seems, therefore, that Parkinson's Disease must be viewed in its entirety. Not merely
by focusing on the immediate and apparent symptoms but on the influence that these
symptoms have in all spheres of life of both the Sufferer and the Carer. Although there
are the particular services available to offer support the initiation of this help is
lethargic. The individuals must pursue their own needs, very little is offered before the
need actually arises. For example, Occupational Therapists do not do regular checks
on newly diagnosed Sufferers to help them modify there homes to accommodate any
disabilities that may develop.
10.2 Further Research
As previously mentioned this research was aimed to be treated as a pilot study to
stimulate areas of interest for further research.That is, it was the intention that this
study stimulate further enquiry.
The findings indicate numerous areas which would benefit from corroboration: They
include dysphagic and dysphasic difficulties, the effect of hospitalisation and the
effectiveness of nurses in their care. Also psychological and sociological aspects of
increasing disability as well as the benefits of respite care, among others.
It is suggested that further research could be taken into this area but to include other
populations of Parkinson's Disease Sufferers to gain a more accurate representation of
needs. It might be interesting to compare the perceived needs of members and non-
members of the Parkinson's Disease Society to see whether there are any differences.
10.3 Possible Benefits of this Study
Although there is an abundance of literature on the signs, symptoms and clinical
diagnosis of Parkinson's Disease there is dearth of information on how various
services can provide appropriate support to fulfil needs. The most recent published
report discovered by the researcher was Marie Oxtoby's report in 1982, although she
has undertaken an (as yet unpublished) pilot study in 1988 into the management of the
disease.
Equally importantly the Carer deserves recognition of her needs as her life becomes
similarly restricted in many ways.
This report may again highlight this aspect of care. This is especially important due to
the current drive for care to be undertaken in the community and a realisation of
possible needs of Sufferers and Carers is therefore essential if there are to be
monitored and met.
The Detail
The following PDF files contain the project write up:
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