Background to the project
- The overall prevalence of
Parkinsonís disease is currently estimated to be similar across all European
countries. Although the disease affects younger people, its prevalence increases
sharply with advancing age and it is estimated that 1.6 per 100 people over 65
years of age suffer from Parkinsonís disease, (de Rijk et al. 1997). This
increases sharply to 3.7 per 100 in those over 75 years and to 5.0 per 100 in
those aged 80 years and over.
- Thus the disease and its
management has significant implications for current health and social care
resources in relation to older people and the future impact of Parkinsonís
disease as a public health issue is even more significant with the ageing of
Europeís population. By 2050, over 100 million people will be over 65 years of
age while the number of people over 80 years will rise to 48 million, suggesting
an estimated 3-4 million older people with Parkinsonís disease and at least
double that number of family members and friends directly involved with day to
day care. Thus the development of more resource-efficient strategies, which will
better enable older people with disabilities, and their carers, to adjust and
manage their daily living will assume increasing importance.
effects of chronic disabling illnesses
well as the physical limitations, chronic disabling illnesses tend also to
impact on communication,
social integration, psychological and emotional
often resulting in increasing depression, boredom and isolation on the part of
and his/her family and friends. Despite the role of family and friends being
recognised as important, little research has been undertaken in relation to
their particular perceptions and needs. Informal carers of all older people are
given little training for their role, despite the major burden of care being
placed upon them. Many carers are themselves frail and elderly with their own
health and social care needs.
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Learning from users
exploring the experiences of older sufferers and their carers throughout the
range of disease stages, this study will create a critical mass of knowledge and
understanding and provide insight into the overall effects on everyday life and
well-being of those who have to learn to live with this and other conditions in
the later stages of their lives.The belief that the patient (and their carer)
are the true experts has guided the development of this project.
many professionals genuinely believe they are meeting information needs,
research suggests that patients and carers receive neither the amount nor the
type of information they want. This particularly applies to older people who are
usually seen as less demanding. There is very little research, however, which
compares and contrasts patient perceptions of both the information-giving and
clinical decision-making processes, with those of professionals. That which does
exist suggests discrepancies in perceptions of particular episodes of care. A
growing body of evidence suggests there are many positive effects of giving
information to patients. Openness also enhances feelings of respect and the
ability to cope, both vital to the well-being.
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- Despite increasing attention
being paid to patient empowerment and involvement in health care
decision-making, it is currently difficult to make meaningful comparisons and
draw useful conclusions. This is particularly the case with older people who
tend to be more acquiescent in professional interactions. Failure to clarify the
nature of the patient/professional relationships results in the terms being used
loosely to denote a whole range of processes and relationships in patient/carer/professional
is also limited research on the psycho-social effects of Parkinsonís
disease and in particular on the degree of control experienced by sufferers.
This loss of control contributes significantly to the incidence of depression in
this client group (Anderson, 1999) and this assumption could reasonably be
transferred to people with other chronic disabling disorders.
new knowledge to promote better practice
on the Quality of Life of people with Parkinsonís disease and of their carers,
is increasing, however few studies identify the different needs at different
disease stages. Also, none compare perceptions of patients/carers and
professionals involved in care.
for providing information start from an assumption about the information that is
required; the form in which it is preferred; and why it is needed, however, many
people still receive less information than they want or need and are less
involved in decision making than they find acceptable.
a variety of sources of information exist, but ensuring that it is in an
acceptable format, that it facilitates understanding, is accurate and unbiased,
poses a considerable challenge to health professionals. There is also evidence
that what individuals wish to know is not necessarily what professionals think
they should know. This study will address and provide models of best practice in
is a growing need for closer collaboration between all health and social care
professions and teamwork is an essential factor in achieving a patient/client
focused approach to care, especially when the patient experience informs
continuing professional development initiatives. Educational packages for
patients, carers and health & social care professionals will form a
constructive and effective template for such collaborative education.
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