Purpose: The purpose of this study was to explore and describe the experiences of nurses caring for dying AIDS patients in the context of palliative care. Methodology: The study explored the meaning of care and terminal illness and the lived experiences of nurses in the context of AIDS in palliative care.
BACKGROUND
The institution studied has shown a gradual increase in the number of people dying from HIV/AIDS. Eight of the institutions participating in the study were tertiary (level 3) and regional (level 2) hospitals.
PROBLEM STATEMENT
Research results by De Villiers and Ndou, (2008) and Smit, (2005) have shown that negative emotions can lead to unethical behavior on the part of nurses and their inability to create the therapeutic relationships of care, mutual respect and trust that are necessary for the protection of the legal and ethical rights of HIV/AIDS patients. Research results by (De Villiers and Ndou, 2008; Smit 2005) have shown that negative emotions lead to unethical behavior in nurses and their inability to create the therapeutic relationships of care, mutual respect and trust that are necessary to protect nurses . legal and ethical rights of HIV/AIDS patients.
AIMS OF THE STUDY
In the South African context, this is exacerbated by the deteriorating state of the public health sector, a sector "characterized by poor capital infrastructure, inadequate equipment and heavy workloads" (Smit, 2005:23). Therefore, the researcher set out to investigate the life experiences of nurses who care for suffering and terminally ill patients, and to investigate how these experiences affect the daily personal and professional life of operating nurses in the context of caring for terminally ill patients with AIDS.
RESEARCH OBJECTIVES
On the other hand, however, the public has high expectations of nurses and expects them to provide quality care to patients at all times, regardless of their illness (Evian, 2000; WHO, 2003; USAID, 2009).
RESEARCH QUESTIONS
SIGNIFICANCE OF STUDY
9 curricula that teach effective coping strategies aimed at preventing anxiety among nurses, especially those with little or no experience in caring for dying patients and their families. It is also significant in the sense that it will generate new knowledge and/or validate the existing knowledge in the context of the public institution and can contribute ideas for policy makers in the wider public sector of the province, or new areas for further research.
DEFINITION OF OPERATIONAL TERMS
For the purposes of this study, operational nurses refer to all categories of nurses, i.e. Registered Nurses, Registered Nurses and Registered Nurses (as the latter tend to study further to take up full responsibility in the nursing profession as Registered Nurses) , which cares for terminally ill AIDS patients in palliative wards. In the context of this study, a level 1 district hospital is a hospital that receives patients from recognized primary care clinics for further treatment.
CONCLUSION
14 Chapter 4 provides the findings of the study and identifies the themes and sub-themes that emerged during data collection. This is discussed under the following two categories: i) the definition of the concepts of care and terminal illness/terminal patient; and ii) care experiences in the context of palliative care.
INTRODUCTION
Access to relevant information sources was then obtained from the University of KwaZulu-Natal Library, via the e-Link Catalog (which can access all UKZN campuses) and the Federated Search (which simultaneously searches several online databases). In addition, off-campus links such as SA ePublications, ProQuest, Science Direct and BMJ Online were accessed.
PERSPECTIVES OF CHRONIC CARE NURSES IN ONCOLOGY SETTINGS 16
What is expected of the nurses caring for dying patients
This area focuses on the internal resilience of nurses caring for dying patients and was well explained by one of the nurses in the de Araujo et al study who said,. This is especially true for nurses who are unprepared for end-of-life care (Li and Ng, 2008).
The need for integral and humane care when death is imminent
Maintenance of effective communication with the dying patient
Consequently, in light of the fact that few studies exist in the current literature regarding hospital-based palliative care, (Tapsfield and Bates, 2011), the researcher began a study in the context of HIV/AIDS to degree of insight and understanding about the lived experiences of nurses caring for terminally ill patients with AIDS in a palliative care ward.
QUALITY OF LIFE: A CORE OUTCOME OF PALLIATIVE CARE
21 issues identified by palliative care providers as major barriers to palliative care, such as lack of data to inform palliative care services, lack of training among palliative care staff, reluctance to use PROMS and lack of time. It was concluded that skills development and support for the use of existing tools were essential for palliative care professionals (Bausewein et al, 2011) so that patients' spiritual and psychological needs can be met with confidence and a greater understanding of palliative care principles, which aim to maintain the quality of life of dying patients (Selman et al, 2011).
THE DEVELOPMENT OF HOSPICE AND PALLIATIVE CARE IN SOUTH
In South Africa, unlike most African countries, palliative care services are also provided in hospitals across the country. However, some international palliative care associations such as the African Palliative Care Association (APCA), the World Wide Palliative Care Alliance, (WPCA) and the Foundation for Hospices in Sub-Saharan Africa remain supportive in addressing the global need for palliative care services. HIV/AIDS, (Hospice and Palliative Care Association of South Africa, 2010).
TRAINING OF NURSES FOR HIV/AIDS CARE
South African hospices are committed to providing quality palliative care to patients and families and to upholding their reputation as quality organisations, (COHSASA/HPCA, 2009). Despite the progress made in government support programs for national advocacy and accredited training support through USAID, the African Palliative Care Association (APCA) and the Palliative Care Association of South Africa in the last 2 decades (USAID, 2009), HIV remains the most. challenging issue for public health sectors (Selywn 2005; Kell and Walley, 2009), due to insufficient skills among caregivers, especially in sub-Saharan Africa where 67% of men, women and children are living with HIV/AIDS, USAID, 2009).
CONCLUSION
INTRODUCTION
RESEARCH APPROACH
It is believed that care and experience are cognitive and interactive processes that are often implicit and subconscious and require an understanding of the essential features of the phenomenon that are free from the influence of external/cultural contexts, as they are mainly achieved by the participants. perspective (Dowling, 2007). Weaver and Olson (2006) are of the opinion that the interpretivist or constructivist paradigm is not without limitations as it tends to fail to take into account the biological and social determinants of the individual's actions, resulting in a loss of objectivity.
A QUALITATIVE APPROACH
It should also be noted that it is not always possible to explain or reveal the researcher's intention. Thus, the qualitative approach not only allowed the researcher to explore the experiences of each individual participant in caring for terminally ill AIDS patients, but also facilitated a descriptive discussion of the study's findings.
RESEARCH DESIGN
To achieve this goal in the interests of the research subjects, the researcher adopted the Husserlian methodological position of 'bracketing' and 'intentionality'. 32 Bracketing defends the validity (credibility) and objectivity (confirmability) of the interpretations against the personal benefit of the researcher (Laverty, 2003).
STUDY SETTINGS
The qualitative methodology was used with an observational (specifically the field notes), exploratory and descriptive design to collect data on the different categories of nurses, i.e. professional nurses, registered nurses and nurses on the male and female palliative care units in the facility under study. The disease profile of the majority of patients in the facility is related to opportunistic infections related to HIV and AIDS; malnutrition, gastroenteritis, tuberculosis and lower respiratory tract infections, and they often require extensive palliative care.
POPULATION
SAMPLING TECHNIQUE AND SAMPLING SIZE
Sampling for the Pilot Study
A pilot study is a trial run that aims to test or refine the study and correct errors before the main research to ensure that the study is reliable and produces consistent results (Polit and Beck, 2006). A nurse at the hospital, trained in palliative care, was asked to participate in the pilot study.
DATA COLLECTION PROCESS
Data Collection Procedure
The researcher followed the following procedure: Participants were selected through purposive sampling and an information document was explained to them. Then, individual appointments were arranged with each participant according to the time that was convenient for the researcher.
Description of participants, settings and interview processes, and synthesis of
- Description of participants
- The settings and interview processes
- Field Notes
- Difficulties experienced in data collection
She is a registered nurse who wants to continue her studies and become a professional nurse at the same institution of study. However, in such situations, participants were encouraged to express their experiences because their descriptions were relevant to the nature of the study.
DATA ANALYSIS
Analysis according to Giorgi’s (1985) steps and discussion of findings
- Step one: Getting the general sense of the whole
- Step two: Discrimination of meaning units
- Step three (a): Relating the meaning units
- Step three (b): Reflecting on the meaning units and extrapolating the
- Step four: Transformation of the subjects’ everyday expressions into
- Step five: Synthesis of transformed meaning units into a consistent
This awareness helped her to avoid allowing personal experiences/preconceived ideas to get in the way of the participants' descriptions (Refer to Appendix Four, 7.4). Care is influenced by participants' background: (developing illness, care started at home).
TRUSTWORTHINESS OF THE RESEARCH
- Credibility
- Confirmability
- Dependability
- Transferability
An audit trail, which is a 'systematic documentation of material that allows conclusions to be drawn about the reliability of data' (Polit and Beck was established by clarifying the steps taken in the research process to ensure that the philosophical underpinning the phenomena under investigation were described in detail to allow readers to assess the contexts in which the conclusions of the investigation may be relevant.
ETHICAL CONSIDERATIONS
- The choice to participate
- Anonymity and confidentiality
- Risks
- Benefits
The nature of the study was explained to them and they were assured that they could ask any questions if clarification was needed. Participants can benefit from the study by using the results to change their practice.
DATA MANAGEMENT, STORAGE AND DISPOSAL
Anonymity was also maintained by sometimes referring to them by number, (Participant 1, 2, 3, etc.) The information obtained from the respondents was kept as confidential as possible, so that all information was stored in a locked cabinet accessible to only the researcher had access. before and during data analysis. As the results of the study will be presented to hospital management and relevant HIV/AIDS conferences and published in journals, its benefits will be widespread.
CONCLUSION
INTRODUCTION
RESEARCH FINDINGS ACCORDING TO CATEGORIES, THEMES AND SUB-
CATEGORY 1: CONCEPTUALIZATION OF THE CORE TERMS: CARING
- THEME 1: CONCEPTUALIZING CARING
- THEME 2: CONCEPTUALIZING TERMINAL ILLNESS
It appears from the data that terminal illness in connection with HIV/AIDS and its care was characterized as something long-term and ongoing either through home care or hospital treatment. The second category discusses the experiences of care in the context of palliative care.
CATEGORY 2: EXPERIENCES OF CARING IN THE CONTEXT OF
- THEME 1: THE SOCIAL NETWORKING SYSTEM
- THEME 2: FACTORS THAT HINDER THE PROVISION OF QUALITY CARE
- THEME 3: MECHANISMS OF ADJUSTING WHILE CARING FOR
Despite the above statements, however, the findings showed that the participants were imbued with the goal of achieving the best quality of care for terminal patients in the context of palliative care. We basically have to adapt to the reality of the HIV/AIDS situation in order to help the sick.
CONCLUSION
They seem to get used to death, so much so that it is considered a routine (Bang with the fist on the table).” Routine killing causes the relatives of patients or staff to become accustomed to death; such that they do not grieve.
INTRODUCTION
THE CONCEPTUALIZATION OF CORE TERMS: CARING AND TERMINAL
CONCEPTUALIZING CARING
- Caring as a Personal Value System
- Caring stems from one’s background
- Caring as Transforming
- Caring requires sacrifice
- Caring is holistic
Similarly, the nurses in the current study had personal values that motivated them to lovingly provide palliative care to terminally ill patients, which would provide emotional support and improve their quality of life. 93 noted that nurses' satisfaction lies in their patients' recovery from their illness.
CONCEPTUALIZING TERMINAL ILLNESS
- Terminal Illness requires long-term care
- Terminal Illness requires care to ensure patients have a peaceful and
- Terminal Illness is an opportunity for new learning
- Terminal Illness raises consciousness on HIV/AIDS
Although all the participants in the current study still referred to their patients as "terminal patients", the nurses explained that what they meant by this was that there was currently no cure for the disease. The nurses were therefore aware of their own mortality as a reality for human existence through their exposure and care of the terminal patients with AIDS in a palliative care context.
EXPERIENCES OF CARING IN THE CONTEXT OF PALLIATIVE CARE
SOCIAL NETWORKING SYSTEM
- Mutual Support
108 collaborative communication between the patient and the palliative care team to improve the quality of life of the terminally ill patients with AIDS. Participants in the current study identified creative ways to adjust within their challenging palliative care context.
HINDRANCES TO CARING IN THE CONTEXT OF PALLIATIVE CARE
- The overwhelming effect of AIDS
- Fear of infection
- Imbalances in the health care system
- HIV described as “just another condition”
- Antecedents that alter levels of caring
- Caring conflicting with the need for money
The nurses recognized their role as health care providers in the context of palliative care and recognized that the sheer scale of the HIV/AIDS epidemic was negatively impacting the delivery of nursing care. However, among the nurses in the current study, none of them expressed the need for additional compensation.
MECHANISMS OF ADJUSTING WHILE CARING FOR TERMINALLY ILL
- Accepting death as a reality of life
Mulaudzi et al, (2011) pointed out that nurses who care for terminally ill AIDS patients need recognition in the form of additional payment. 128 nurses' needs with the aim of promoting attitudes of care for terminally ill patients with AIDS.
CONTRIBUTIONS OF THE CURRENT STUDY TO SCIENTIFIC
- What is already known about the topic
- What this study adds to the body of knowledge
STRENGTHS AND LIMITATIONS OF THE STUDY
The strengths
Thus, the strength of this study relates to its phenomenological nature, as the researcher used the participants' own words to describe their lived experiences of caring for terminally ill AIDS patients. This is the first study to be conducted based on the experiences of nurses caring for terminally ill patients in palliative care units at a study institution, and has provided new information that can assist nurse managers, nurse educators, and hospital administrators in developing and inclusion of educational programs. in their policies or curriculum that teach effective coping strategies aimed at preventing fear of death among nurses, especially those with little or no experience caring for terminally ill patients and their families.
The limitations
By applying this phenomenology in this study, the researchers' opinion or experiences of caring for terminally ill patients had to be revealed through conscious reflection or parentheses to avoid influencing the nurses' experiences. However, in the context of this study, it was important to understand the nurses' lived experience of caring for terminally ill patients from their own perspectives in order to optimize the quality care of these patients.
RECOMMENDATIONS
- Clinical recommendations
- Educational and professional recommendations
- Manager and policy recommendations
- Research Recommendations
The Nursing Strategy for South Africa (2008) and the nurses who participated in this study reiterated that there is a need to focus on improving the quality of health care in all health sectors, but that this is a top priority for the public. sector. This idea is supported by the findings of Mulaudzi et al (2011), where more than half of the nurses felt that the additional allowance was necessary due to the long-term nursing activities that the nurses were engaged in.
CONCLUSION
Palliative care for HIV in the era of antiretroviral therapy availability: perspectives of nurses in Lesotho. Quality of life among patients receiving palliative care in South Africa and Uganda: a multicentre study.
APPENDIX ONE
143 Confidentiality: Information received from you will be held to the highest possible level of confidentiality. Before and during data analysis, the questions will be kept in a locked cabinet where only the researcher has access.
APPENDIX TWO (SECTION A)
APPENDIX THREE (SECTION B)
APPENDIX FOUR
APPENDIX FIVE
APPENDIX SIX
Participating staff members will be asked to do so at a time that is convenient for both the hospital and the staff members concerned. The benefit of the study for the hospital would be mainly in terms of the results obtained - and how these can be applied by the middle and senior managers of the hospital in improving the quality in the palliative care wards.
APPENDIX SEVEN
I have worked a lot in the care of the elderly….from 1996-2000 I worked in (name the Hospital) that specialized in chronically ill patients….and the terminally ill patients….It all started in 2008 when I in a surgical ward.... We had a patient come in for exploration and he had a small incision but it never healed. Responsibility in taking care of them: as a senior nurse, I was in charge of the ward... and I had to take responsibility for taking care of those people, which I actually really enjoyed.
APPENDIX EIGHT
Eventually he was discharged home and was happy with his fellow patients, nurses and especially Alice. They exchanged phone numbers so that if he needed help with his treatment or was having problems, he could call and get help when he needed it.
APPENDIX NINE
APPENDIX TEN
Fifth step: formalization of a consistent description of the structure of the studied phenomenon across subjects (see Chapter Five).
APPENDIX ELEVEN
APPENDIX TWELVE
Table One (3.1)– Inclusion and Exclusion Criteria for Sampling
Table Two (3.2) – Matching Objectives with research questions
Table Three (3.3) – Data Analysis Process and Application
Table Four (3.4) – Categories, themes and sub-themes
Table Five (3.5) – Summary of participants
