PSYCHOSOCIAL CHALLENGES EXPERIENCE BY PATIENTS AT TERMINAL STAGE OF ILLNESS AND THEIR PERCEPTION OF PALLIATIVE NURSING CARE IN TERTIARY HOSPITALS
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.
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.
Psychosocial challenges are common experiences for cancer patients. Mckenzie and Crouch 2004 (in Lockwood-Rayermann, 2006); and Kataoka, Portillo, Henry, Holzemer, 2008) commented that psychosocial distress is prevalent in people with cancer because the diagnosis causes disruption in all aspects of patients’ daily lives, yet there is dearth of published literature in our locality that examined the psychosocial challenges experienced by these patients and their perception of the palliative nursing care received from the nurses. Majority of the work done in Nigeria are on physical challenges such as pain yet psychosocial challenges are said to be more devastating to the terminally ill patients.
Purpose of the Study
The purpose of the study is to determine (using descriptive phenomenology) the psychosocial challenges experienced by hospitalized cancer patients (stages III & IV) and
how they perceive palliative nursing care received from nurses in tertiary hospitals in Enugu State, Nigeria.
- What are the psychosocial challenges experienced by hospitalized cancer patients (stages III & IV)?
- What is the most distressing psychosocial challenge?
- How do these patients perceive the palliative nursing care received from the nurses towards helping them cope with the experienced challenges?
- What aspect of palliative nursing care do these patients perceive as most valuable?
Significance of the Study
Results from the study will be useful in understanding psychosocial challenges experienced by cancer patients (stages III & IV).
The data collected will be used to design appropriate intervention to handle these challenges experienced by these type of patients.
The result will also expose the weaknesses and strengths of nurses in providing these specialized type of care so as to enhance their quality of care and then increase these patients’ satisfaction with care received.
Scope of the Study
This study is limited to adult patients at terminal stage of illness such as those with cancer of any part of the body (stages III & IV) in the three tertiary hospitals (University of Nigeria Teaching Hospital, Enugu State University Teaching Hospital, and National Orthopaedic Hospital) in Enugu State. Unconscious patients are excluded from the study because they cannot communicate neither can they perceive anything. The study is delimited to psychological, social and spiritual challenges of these patients and the challenge they considered most distressing. It also includes their perception to palliative nursing care received and the care they considered most valuable.
- Patients at terminal stage of illness, in this study, are those with advanced stage of cancer of any part of the body (stages III & IV).
- Psychosocial in this study include psychological (emotional feelings), social (functioning in usual roles, maintaining relationships, receiving support), and spiritual (frequency in praying and use of spiritual books as well as need of the Priest/Pastor and spiritual support).
- 3 Challenges refer to difficulties/problems/needs experienced by patients at terminal stage of illness in respect to their emotional feelings, performance of activities of daily living (ADL), performance of social and spiritual activities.
- Perception in this study connotes various ways patients at terminal stage of illness describe and rank the palliative nursing care they received.
- Palliative nursing care in this study refers to the tasks performed by the nurses in the tertiary hospitals Enugu in helping the patients at terminal stage of illness cope with their psychological, social and spiritual challenges experienced.