Nurse Navigator and Quality
of life research
Sampoornam
W.*
Lecturer, PhD
Scholar, Dhanvantri College of Nursing, Pallakkapalayam, Namakkal (Dt) - 637303
*Corresponding Authors E-mail:
sampoornamwebster@yahoo.in
INTRODUCTION:
Use of the term "quality of life" invokes a number of
reactions that are potentially damaging for scientists and clinicians involved
in the delivery and evaluation of health care. These potential risks can
escalate to unacceptable levels when associated with the promotion of new
therapies. Both the lay public and health care professionals automatically
accord status to the concept of "quality of life" that goes well
beyond any comprehension that they might have of its definition. In fact
precisely because the meaning is left unspecified it has a malleable property
that renders it simultaneously valued by all and fully understood by none.
(Paul Kind 2001)
The Oncology Nurse Navigator is a professional whose clinical
nursing expertise guides patients, families and their caregivers to informed
decision-making, collaborating with a multi-disciplinary team to allow for
timely cancer screening, diagnosis, treatment and increased supportive care
across the cancer continuum. (Sharon Francz 2010)
Definition:
WHO (1997) defines Quality of Life as
individual’s perception of their position in
life in the context of the culture and value systems in which they live and in
relation to their goals, expectations, standards and concerns. It is a broad
ranging concept affected in a complex way by the person's physical health,
psychological state, level of independence, social relationships, personal
beliefs and their relationship to salient features of their environment.
The mission statement of the International
Society for Quality of Life Research is to advance the scientific study of
health-related quality of life and other patient-centred
outcomes and also to identify effective interventions, enhance the quality of
health care and promote the health of populations. (Budapest Hungary 2012)
Quality of
Life Research Unit:
Quality of life is one of the fastest growing areas of research
and policy. The concept has an intuitive appeal as a measure of the well-being
of individuals, communities and nations. It is increasingly promoted as an aid
for political decisions and public funding. Mark Rapley (2003)
Quality of Life is an area of study that has
attracted an ever increasing amount of interest over the past two decades,
particularly in the areas of health, rehabilitation, disabilities studies and
social services but also in medicine, education and others.
The study of Quality of Life is an examination of
influences upon the goodness and meaning in life as well as people's happiness
and well-being. The ultimate goal of quality of life study and its subsequent
applications is to enable people to live quality lives - lives that are both
meaningful and enjoyed. Dr. Rebecca Renwick
The Quality of Life
Profile was developed to provide a measure that considers both the
components and determinants of health and well-being. It draws upon a
conceptual model that is consistent with recent definitions of health and
health promotion as provided by the World Health Organization. The profile
emphasizes individuals' physical, psychological and spiritual functioning,
their connections with their environments and opportunities for maintaining and
enhancing skills.
Conceptual framework has three life domains, each of which has
three sub-domains.
Being- Physical, psychological and spiritual being
Belonging – Physical, social and community belonging
Becoming- Practical, leisure and growth becoming
Ethics for
Health Related Quality of Life:
The quality of life ethic refers to an ethical principle
that uses assessments of the quality of life that a person could potentially
experience as a foundation for making decisions about the continuation or
termination of life. It is often used in contrast to or in opposition to the sanctity of life ethic.
Quality of life research grants:
Quality of Life Research Grants have
been created to support quality of life cancer research that has the potential
to make a significant impact on the burden of disease in patients, survivors
and caregivers. These grants are intended to explore psychosocial,
survivorship, supportive care and end-of-life issues, research gaps, needs and
opportunities or models for follow-up care. The grants are meant to accelerate
and focus the knowledge gained from scientific findings, in the short or long
term, into outcomes that will result in the reduced burden or enhanced quality
of life for cancer patients in Canada and elsewhere.
The goal of this grant program is to
support and accelerate research addressing the application of new knowledge
relevant to improving quality of life .The program is particularly interested
in research that has the potential for practical applications within the domain
of knowledge translation. Applications can be from multidisciplinary teams or
individual investigators. Multidisciplinary collaboration is encouraged.
Examples
of projects that may be appropriate for Canadian grant program include
·
Qualitative or quantitative studies
·
Case control or cohort studies
·
Clinical trials
·
Health systems, health economics and health
services research
·
Methodology development
·
Measurement tools development
·
Efficacy or effectiveness studies of novel
interventions (Canadian Cancer Society 2012)
Research gap
in quality of life:
The disturbing gap in quality, the difference between present
treatment success rates and those thought to be achievable using best practice
guidelines led the Agency for Healthcare Research and Quality (AHRQ) to examine
the issues surrounding the adoption of improved clinical practices. (Stephanie
Chang 2004). Nurse navigator should fill the research gap in quality of life
research through evidence based practice by conducting and building research.
Improving
the quality of life through research:
The explosive growth in understanding of the
structure and working of life has brought about vast new developments in health
care. But the challenges ahead, from the reappearance of once-conquered
diseases to the unsustainable use of natural resources, leave no room for
complacency.
The gap
between human activities and the capacity of the natural resources upon which
they depend is steadily widening. Environmental degradation is feeding back
into new health problems for society while health-care costs spiral upwards,
aggravated by an ageing population. The scientific capacity at national level
is often not enough to cope with the increasing scale and complexity of life
science research. To make further progress at the cutting edge Europe's
research institutes and companies must be able to draw on the resources of the
continent as a whole. (European
commission 2000)
Nurse Navigator role in quality of life:
A nurse navigator is a nurse who provides
oncology patients with the support needed from the point of screening and
diagnosis through treatment and survivorship. The nurse navigator assists in
coordinating the supportive care to the patients who seek help during their
cancer journey which can include answering questions about the disease and
treatment options, giving referrals to dieticians or psychological assistance
and providing resources for everything from financial assistance to
transportation. (Ellie Ryan 2012)
The Nurse Navigator uses advanced practice
expertise to identify and implement quality improvement initiatives and works
with all members of the health care team to enhance the care and services
provided to patients. (Sherry Melinyshyn, Andra Wintonic 2006)
Oncology nurses know that
unresolved distress can lead to additional problems such as non adherence to
therapy and increased medical
costs and have a negative impact
on survival. Addressing distress
concerns in patients with cancer can have a positive impact in reducing
distress and improving quality of life. (Kerrie L. Girard, Karen Masino, 2012)
Increasing numbers of
cancer treatment programs striving for improvements in efficiency and adherence
to care look to nurses as a key element to improved patient outcomes. Oncology Nurse Navigators (ONNs) have
emerged from the field of oncology nursing to answer the call within the
healthcare system for patient navigation for all cancer types. The ONN is the
clinical professional with the knowledge and skills necessary to assess patient
needs and make referrals to appropriate resources and services.
Apart from the roles of a
licensed nurse, the ONN needs to develop competencies to integrate the roles of
healthcare promoter, educator, counselor, care coordinator, case manager,
researcher, and patient advocate. Hence, education programs for preparing ONNs
must ensure that professional nurse navigators are equipped with the essential
competencies that enable them to fulfill these roles competently and ethically.
The core competencies developed to serve the
following purposes
·
To frame the philosophy of oncology nurse
navigation based on accepted nursing practice.
·
To define the professional role of oncology nurse
navigation and the competencies required to successfully fulfill the role.
·
To lead the development of curriculum and
navigation models that prepare ONNs to guide and support cancer patients in a
safe and ethical manner.
·
To inform healthcare employers and the public of
what they may expect from an ONN upon entry to practice.
·
To educate currently practicing ONNs to further
develop and/or establish a successful navigation program regardless of practice
size, type, or geographical location.
Potential
areas for nurse navigator in evaluation and research include
·
Sustainability
·
Efficacy
·
Navigator impact on timeliness of care
·
Role in clinical trials
Ř When navigation begins and ends-Hand off
challenges and strategies
Ř Transitioning from clinical navigation to
survivorship navigation
Ř Creation of algorithms and guidelines to
enhance patient navigation
Ř Evaluation of support services and gaps and
how to meet these needs in an era of economic challenges
Ř Research on emotional well-being in
families who are assigned navigators
Ř Identification of the best time in disease
trajectory for navigation process to begin to make the most impact on patient
outcomes---may be disease-specific.
Measuring quality of life in breast cancer patients is of
importance in assessing treatment outcomes. Breast cancer patients reported
problems with global quality of life, pain and body image even after 18 months
following their treatments. (Ali Montazeri
et.al., 2008)
The diagnosis and management of cancer can have a major impact on
every aspect of a patient's quality of life. Despite its importance, quality of
life is rarely a reported outcome in randomized clinical trials in cancer
patients. Failure to collect quality-of-life information may reflect a lack of
information among researchers and clinicians about the adequacy and relative
merits of measures available for assessing quality of life. (K
Donovan, R W Sanson-Fisher, S
Redman 1989)
Quality of life in younger patients
treated for breast cancer is seriously compromised and these women suffer from
severe psychological distress, infertility, premature menopause, a decrease in
physical activity and weight gain. (Kim Irwin, 2012)
Strategies
to Improve Quality of Life:
1.
Cultivate Optimism- Being positive. Optimism
increases job performance, creativity, ability to weather stress and self
esteem.
2.
Be Present- Take a deep breath.
3.
Clarify- Spend some quality time getting clear.
4.
Give Out- Mentor, contribute, practice
random acts of kindness, express gratitude.
5.
Connect- Explore and strengthen the connection to a Higher
Power.
6.
Find Flow-Flow is being in the groove, totally engage in
present activity.
7.
Celebrate-Celebrating is a wonderful way to share love with
others and incorporate more play in ones lives.
8. Love Yourself- Love yourself by treating the body with respect
and care. Fuel it well with fresh fruits, vegetables, whole grains and
lean protein. Move it daily. Don’t smoke, don’t abuse
alcohol. Meditate and Sleep well. Molly Mahar (2009)
CONCLUSION:
Quality of life (QOL) is a complex and
multidimensional concept that is difficult to define and measure. Women with
recurrent breast cancer are in need of programs to assist them with the severe
effects of the disease on their quality of life. Programs need to include
family members to help counteract the negative effects of the recurrent disease
on their mental health, and to enable them to continue as effective caregivers.
Women with breast cancer are in need of care programs that will help them to
manage these severe effects of the recurrent cancer on their quality of life.
REFERENCES:
1.
Ali Montazeri et.al. (2008). Quality of life in patients with breast
cancer before and after diagnosis: An eighteen months follow-up study” BioMed Central Cancer. (8): 330.
2.
Paul Kind (2001). The measurement of quality of life in
clinical trials: Considerations of good research practices.
3.
Kim Irwin (2012). Young breast cancer survivors face serious
quality of life challenges. UCLA Newsroom.
4.
Budapest Hungary
(2012). Quality of life research. International society for quality of life
research. Springer.
5.
Dr. Rebecca Renwick. Quality of life
research unit.
6.
Ellie Ryan (2012). Health News
7.
Sherry Melinyshyn, Andra Wintonic (2006). The role
of the nurse navigator in the breast assessment program at Hotel Dieu Hospital. The Nursing Journal.
8.
Kerrie L. Girard, Karen Masino
(2012). Screening and management: Distress and the Nurse Navigator, Part II, onc Live.
9.
Sharon Francz (2010). National
Coalition of Oncology Nurse Navigator.
10. Stephanie Chang (2004). Closing the Quality
Gap- A critical analysis of Quality Improvement Strategies. Agency for Health
care Research and Quality.
11. Canadian Cancer
Society (2012). Quality of life research grants.
Received on 28.10.2012 Modified on 10.11.2012
Accepted on 15.12.2012 ©
A&V Publication all right reserved
Asian J. Nur. Edu. and Research 2(4): Oct-Dec. 2012;
Page 224-227