ABSTRACT
Terminal illness is the term
used to describe disease conditions which progressively deteriorate and lead to
the death of the patient. Such conditions include cancer and full blown AIDS,
among others. The diagnosis of terminal
illness in a person evokes lot of both physical and psychosocial challenges.
The physical challenges are easily observable by healthcare-providers while
subjective psychological challenges are scarcely unexplored. There is a dearth
of research about the psychosocial challenges experienced by these patients.
This study investigated the psychosocial challenges experienced by hospitalized
cancer patients (stage III & IV) and their perception of palliative nursing
care received in tertiary hospitals in Enugu State. The understanding of these
psychosocial challenges experienced and expressed by these patients is crucial
in effecting timely and appropriate palliative nursing care intervention. Descriptive phenomenological qualitative
design was used which provided opportunity for the participants to express experiences
in narrative form freely. Eighteen participants purposively participated and
data were collected using researcher developed interview guide and their
responses tape recorded. Data were analysed thematically, using Tesch &
Giorgi’s approach. The findings revealed that the psychological challenges
experienced by the participants included devastation, anger, loss of control,
loneliness, withdrawal from relationships and an overwhelming sense of
powerlessness to function independently, anxiety, worry, sadness/depression and
fear about the disease outcome. Social challenges experienced included
limitations in performing their activities of daily living (ADL); dependency on
others for care; difficulty in communicating with healthcare-providers, some family
members and friends; financial difficulties; lack/poor encouragement from
family members/friends as well as irregular visitation. Majority of the participants did not
experience spiritual challenges; instead, the illness moved them closer to
their God. The psychosocial challenge
mostly experienced by the participants was worry about the outcome of the
illness and their family welfare. The
participants’ perception of palliative nursing care revealed that nurses did
not understand the depth of their psychological needs and care; nurses knew the
disease outcome but don’t know what to tell them; nurse-patient relationship
was isolating and not close; nurses were too busy with their office work, and
did not answer their calls promptly but served their medication promptly;
nurses did not attend to their ADL needs regularly; and that nurses prayed for
them only at night. The participants
most valued care were treating them with love, respect and concern through
making time to talk with them and listen, for them to unburden their minds; and
attending promptly to their ADL needs.
In conclusion, the participants had lots of psychosocial challenges and
perceived that the palliative nursing care received to help them cope with the
challenges were not satisfactory. In
recommendation, there is need for knowledge update of palliative nursing care
in tertiary hospitals to ensure that these patients receive holistic care from
experts.
CHAPTER
ONE
INTRODUCTION
Background to the Study
A
stage of disease/illness may be described as early, late or terminal. A
terminal disease condition is an infection or illness which is considered
ultimately fatal or incurable (Baylor, 2006). It is more commonly used for
illnesses which are progressive such as cancer or advanced heart disease,
including the end stage diseases like acquired immunodeficiency syndrome (AIDS)
(Adenipekun, Onibokun, Elumelu, and Soyannwo, 2005). In Nigeria, Cancer and HIV/AIDS are two
important terminal illnesses associated with severe distress before eventual
death. Cancer is a leading health
problem that affects millions of people every year and is the leading cause of
death both in developed and developing countries (Chou, Dodd, Abrams and
Padilla, 2007). The diagnosis of terminal illness presents people with lots of
challenges. A challenge in this context is the feelings, needs, difficulties,
pain or distress experienced by people at terminal stage of illness. The
potential sources of distress experienced by patients with terminal illness are
not limited to pain and physical symptoms but with such challenges as
emotional, mental, social, economic or even spiritual. The physical challenges
experienced by terminally ill patients are undeniable and easily observable by
healthcare providers but the psychological (emotional and mental) challenges
are subjective (McAndrew, 2004).
Individuals diagnosed with incurable diseases that are aware of
impending death are likely to be emotionally disturbed in their mind than can
be perceived by others from their appearance.
The psychological sequelae of
the patients may include depression, anxiety about one’s body image, fear of
invasive treatments, self-pity, and a pre-occupation with death (John and
Ndebbio, 2002). Previously independent patients may fear that they will now
need to rely on others for their daily needs, losing the ability to choose for
themselves how their lives progress and this promotes low self esteem. Thus, social functioning may be impaired
resulting in withdrawal from relationships, and consequently social isolation.
Also, many people experience a crisis of faith as the end draws near, either
craving comfort from their religious beliefs or shunning them altogether. All
these psychosocial issues which can affect a patient’s quality of life need to
be appropriately identified from patients’ point of view. Therefore this study focused on the
psychosocial challenges experienced by these patients, as this is vital in
ensuring social adjustment and improvement in the quality of their lives.
The
professional inputs of nurses will enable such patients and the relatives to
face the dying process with strength and hope. Palliative care then remains the
only option for the management of terminally ill patients (e.g. advanced
cancer) whom medical effort has turned away from active therapy and becomes
concentrated on the relief of symptoms and support for both the patient and
family members (Meremikwu, 1998). According to Paice (2002), some patients
perceive the palliative care as services for those who have given up but
palliative nursing care concerns are symptom relief, promotion of general well
being, spiritual, psychological and social comfort.
There
are three important aspects of palliative nursing care of patients at terminal
stage of illness namely: supporting the patient; fostering communication
with the patient so that he/she
does not face the illness in increasing isolation from others; talking with
family members and with others who care for the patient, such as the physicians
and clergymen among others. Palliative
care optimizes quality of life throughout the course of the illness through
meticulous attention to the physical, spiritual and psychosocial challenges of
these patients and their families. Understanding of these peculiar psychosocial
challenges experienced by these patients is crucial in effecting timely and
appropriate interventions. Despite the multitude of research studies related to
terminal illness, studies on challenges expereinced by these patients (especially advanced cancer patients) and
their perception of palliative nursing care received from the nurses in
tertiary hospitals in Enugu, have not been studied, thus the need for this
study.
Problem Statement
PSYCHOSOCIAL CHALLENGES EXPERIENCED BY PATIENTS AT TERMINAL STAGE OF ILLNESS AND THEIR PERCEPTION OF PALLIATIVE NURSING CARE IN TERTIARY HOSPITALS IN ENUGU STATE, NIGERIA
