|Year : 2018 | Volume
| Issue : 4 | Page : 755-765
|A nursing perspective of caring for patients with end-stage renal disease in hospitals
Theresa M Garvey RN, BSN , Nora M McCarron
King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia
Click here for correspondence address and email
|Date of Submission||24-Apr-2018|
|Date of Acceptance||29-May-2018|
|Date of Web Publication||28-Aug-2018|
| Abstract|| |
There has been a rapid increase in the incidence of chronic kidney disease and those requiring renal replacement therapy. Managing these patients requires a multidisciplinary team approach. Clinical nurse specialists (CNS's) play a vital role in ensuring the highest quality care is delivered in a cost-effective manner. There is an acute shortage of CNS' in the Middle East and other developing countries. Development of the CNS's role necessitates comprehensive training programs in conjunction with multi-stakeholder acceptance. This article hereby addresses the various steps in developing such a role as facilitating nurses to work to their full professional and academic potential ensures best practice.
|How to cite this article:|
Garvey TM, McCarron NM. A nursing perspective of caring for patients with end-stage renal disease in hospitals. Saudi J Kidney Dis Transpl 2018;29:755-65
|How to cite this URL:|
Garvey TM, McCarron NM. A nursing perspective of caring for patients with end-stage renal disease in hospitals. Saudi J Kidney Dis Transpl [serial online] 2018 [cited 2018 Nov 15];29:755-65. Available from: http://www.sjkdt.org/text.asp?2018/29/4/755/239644
| Introduction|| |
Improved patient outcomes and reduced mortality have always been at the core of the healthcare profession. As the largest cohort of healthcare providers, nurses are at the forefront of this initiative. Many studies have reported the benefits of investing in a highly educated and motivated nursing workforce and the risks associated with suboptimal nursing environments.
Nephrology is a specialist area and therefore requires those caring for individuals with renal disease to hold specialist knowledge and expertise. Chronic kidney disease (CKD) affects almost half a billion adults worldwide. Within Saudi Arabia, its prevalence is approximately 5.7%. CKD is associated with many other illnesses such as hypertension and diabetes and may/will inevitably lead to end-stage renal disease (ESRD) requiring some form of renal replacement therapy (RRT). Expatriate nurses perceive many challenges when caring for patients with renal disease within Saudi Arabia; issues reported include reduced staffing levels, similar to those witnessed in western societies., Other challenges of note specific to working in a Gulf country include cultural differences, communication barriers, patient/ relative and multi-disciplinary perception of nursing as a profession, and lack of specialist roles and training. Establishing a clinical ladder for renal nurses has the potential to positively impact both the retention of nurses in Saudi Arabia and improve the quality of lives
| Background|| |
Nursing, in general, is highly thought of worldwide with many considering it as one of the most trusted aspects of healthcare provision with regard to integrity and honesty.,, Over the last number of decades, nursing has transformed itself into a highly educated, autonomous and independent profession focusing primarily on nursing evidence-based theory leading to better patient-centered practice. However, this worldview is not shared equally. Many countries such as the US and Australia hold a more positive public perception while others including Saudi Arabia often see nurses and the nursing discipline in a less favorable light. Although slowly changing, negative attitudes towards nursing inevitably have an impact on both the quality and volume of entrants to the profession.
The Saudization program was initiated in 1992 to improve employment rates among Saudi nationals and reduce the country's dependence on expatriate workers.,,, Nursing as among the largest group of employees has held much emphasis for Saudization. To date, the program continues to encounter challenges with a mere 34% of the entire body of nurses comprising of Saudis. As many as 50% of Saudi nurses leave shortly after graduation. Those that do remain within the profession report high levels of job-related stress and lack of adequate job satisfaction. To attract the number of Saudi nurses into the profession that is needed, areas such as job satisfaction, further education and increased job opportunities such as specialist roles must be looked at. Many studies have shown the importance of a strong well-educated nursing workforce to improve the lives of all those accessing healthcare., The field of nephrology is no different. The nature of the disease is both specific and multifaceted. Those providing care must exhibit a level of knowledge and expertise to match the complexity of the illness.,
ESRD as a life-limiting disease has a potentially enormous impact on the quality of life of the individual experiencing the illness. With more and more focus on patient satisfaction, improving the outcomes of those with ESRD is inextricably linked with patient satisfaction and improved quality of life. Its association with many other comorbidities, such as diabetes and cardiovascular disease, represents a major impact on the individual's physical and psychological well-being. It is a leading cause of morbidity and mortality worldwide, with those suffering from the disease often receiving a disproportionately higher slice of healthcare resources., Mortality rates among this cohort are as high as twice that of cancer patients. Therefore, renal nurses require specialized expertise in managing all the care needs of their patients.,,
Internationally, nephrology nursing has been recognized as its own specialty for the past decade with many countries having developed nephrology associations which offer nurses standards of practice. Within this field, there are many nursing subspecialties such as renal transplant, anemia, vascular access, peritoneal and hemodialysis (HD), palliative care and general nephrology with nurses practicing in all healthcare settings. The nurses' role encompasses patient advocacy and education in combination with hands-on care.
Although there are substantial variances and often confusion internationally, surrounding a conclusive definition of the advanced nurse practitioner title and role, it is generally considered an umbrella term for advanced practice nurses (APNs), clinical nurse specialists (CNSs), nurse practitioners, and nurse consultants.,,, The International Council of Nurses (ICN) describes the concept as “registered nurses who have acquired the expert knowledge base, complex decision-making skills, and clinical competencies for expanded practice, the characteristics of which are shaped by the context or country in which they are credentialed to practice”., To many it is considered the future of healthcare as a whole, and nursing specifically. Many studies have shown the significant improvement in care delivery due to the inclusion of specialist clinical nurse practices and adoption of nurse-led interventions.,,
The following article aims to describe a potential working model for the implementation of advanced nursing practice into the Saudi healthcare system.
| The PEPPA Framework|| |
Secondary to the changing health care needs of Canada, the participatory, evidence-based, patient-focused process for guiding the development, implementation, and evaluation of APN (PEPPA) framework was developed from the foundational work of two previous models by Spitzer, (1978) and Dunn and Nicklin, (1995). The framework, developed by Bryant-Lukosius and Di Censo in 2004, is a nine-step model aiming to guide the successful integration of advanced nursing practice into healthcare [Figure 1].
|Figure 1: PEPPA (participatory, evidence-based, patient-focused process for guiding the development, implantation, and evaluation of advanced practice nursing) framework.|
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Step 1: Define the patient population and describe the current model of care
The aim of this initial phase is to clearly identify the patient population in which the framework attempts to support. It further purposes to view and map the interaction of patients and their families with their healthcare provider along their illness trajectory. The patient population under discussion for this paper is those individuals living with CKD and ESRD. The lifespan of care begins when an individual initially presents with renal impairment and continues while they progress through their disease until their death. ESRD is a chronic, life-limiting disease. Progression of the disease is directly influenced by and effects all aspects of the bodies functionality, and therefore, management of the disease must consider other disciplines such as cardiology, diabetes, critical care, psychology, and elderly care, to name but a few.
Anecdotal evidence highlights that renal disease in Saudi Arabia is managed solely by nephrology physicians with the nurses' role often seen as performing specific clinical tasks related to RRT. There is at present no official working model of care for renal nurses within the Kingdom.
Step 2: Identify the stakeholders and recruit the participants
As per the authors of PEPPA, everyone associated with the health-care needs of a specific patient group can in some way influence their health outcome. At the center of the framework is the patient but family members, health care institutions, support staff such as palliative care and transplant teams, hospital administrators, renal associations, and governing bodies all have a part to play. Although nurse involvement is core to the framework, another fundamental belief is true collaboration among all stakeholders with full support from all to ensure its success. Potential participants for the implementation of such a framework within an acute in-patient institution may include but not limited to the director of nursing, the assistant director of nursing covering nephrology units, the head nurse of the dialysis unit, the chairman of Nephrology and the assistant director of education.
Step 3: Determine the need for a new model of care
While this phase is intended to include analysis of previously used models of care thus identifying both its strengths and weakness allowing for the development of a new improved model; it has been established that such a model does not exist in Saudi Arabia.
This further highlights the need for the creation of a renal care model of nursing. This is compounded by the wealth of research available internationally, promoting the benefits of advanced practice within nursing generally and nephrology specifically.,,,,
Bryant-Lukosius and Di Censo (2004) identify six key areas that should be investigated which include the health-care needs of patients and their families; how these needs should be met and the outcome of meeting those needs; what are the contributing aspects associated with meeting those needs; how are the needs perceived by health-care providers; what other aspects should be looked at and finally how is this information to be gathered [Figure 2].
|Figure 2: Identifiable factors to be investigated (adapted from Bryant-Lukosius and Di Censo (2004).|
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Step 4: Identify the priority problems and goals
To clearly understand the needs of the population, Bryant-Lukosius, and Di Censo (2004) suggest hosting strategic meetings between the relevant stakeholders. From these meetings, agreement regarding the goals of establishing a nursing care model are discussed. Priorities and challenges of reaching such goals including analysis of similar programs established elsewhere are debated.
Early recognition of renal disease and better compliance with treatment may slow its progression and delay the onset of ESRD. The Healthy Transitions Care Management Program, was an initiative introduced in North America in attempt to improve patient education related to their chronic disease, resulting in better outcomes and reduced hospitalizations. It included the appointment of a nurse as care manager. In their randomized controlled trial (RCT) of the program in relation to CKD outcomes, Fishbane et al, (2017) found a consistent and significant increase in those availing of peritoneal dialysis and earlier renal transplantation thus reducing morbidity and mortality rates.
One complication of renal disease is anemia. Symptoms related to anemia include sleep disturbance, exercise intolerance and both cognitive and cardiac dysfunction., A major cause of anemia in CKD is erythropoietin deficiency resulting in a reduction in red blood cell production and subsequent hemoglobin (HB) levels. Although there is some debate on the therapeutic target range of HB, it is agreed that improvements in anemia management is positively correlated with improved patient symptoms. Current treatment of choice includes erythropoiesis-stimulating agents (ESA's). However, the use of ESA's is not without risks such as hypertension and stroke. Therefore, close monitoring of the patients' HB both with and without treatment is crucial. Nurses, as a consequence of their proximity and extended time spent with patients are best placed to both monitor and manage anemia symptoms.,
Despite any and/or all interventions related to CKD it remains a chronic and life-limiting illness. This is often poorly conveyed to and therefore understood by the individuals and their families suffering from the disease with many believing that HD will help to not only improve their symptoms but will also extend their lifespan. Advanced care planning (ACP) is a patient-centered approach surrounding the trajectory of renal disease and the preferred goals of selected treatment options, i.e., RRT versus conservative management (CM). Due to its insidious nature and the association of various comorbidities leading to many deteriorations and recoveries along their journey, discussion regarding the individuals ACP should be carried out at the earliest possible stage of the disease and reassessed as appropriate to fit the ongoing needs of the patient., Clinicians, however, have reported many barriers to entering into such a discussion with their patients including their own personal distress with such dialogue and patient reluctance to engage in such a discussion. Improving patients understanding of their disease and engaging in honest discourse regarding their prognosis may help to alleviate some of the challenges facing healthcare providers.,
Within the context of Saudi Arabia, the conversation related to death and dying is often more difficult. From a cultural perspective, Saudi healthcare practitioners admit to the avoidance of such a discussion particularly during times of severe illness or when death is imminent. This reluctance is borne from the notion that to acknowledge a diagnosis of fatality is to lose hope and therefore forgo God's help. Saudi families often, in an attempt to alleviate the risk of their family member losing hope, prevent medical personnel from disclosing such a diagnosis/prognosis. This poses a major ethical dilemma for healthcare workers in general and western nurses in particular. Consequently, such a conversation should be entered into as soon as possible. Greater self-efficacy which is the individuals personal understanding of their ability to cope with their illness has been proven to promote self-management and improve outcomes. Empowering patients through education related to their illness including different treatment options is the best method of achieving better self-efficacy., A fundamental feature of nursing is the creation of an effective and caring nurse-patient relationship. It is accepted that nurses provide up to 80% of all healthcare provision to an individual. Therefore, utilizing this nursing attribute early with regard to the emotional and psychological management of CKD and ESRD will have an enormous impact on the quality of care offered and in turn improve outcomes.
As current research suggests, engagement in RRT may not be the most appropriate option for many older individuals suffering from coexisting conditions as prognosis and quality of life may be limited. For these individuals, CM is potentially a more viable option., However, as the premise of palliative care is the relief of symptoms and improvement in quality of life, it is considered appropriate to involve this service at any point along the disease trajectory and can very much be offered as an adjunct to curative therapy. Fostering a positive and caring relationship is central to practicing successful palliative care. Within other fields such as cancer, the integration of CNS's into the multidisciplinary team has been shown to help patients develop a deeper understanding of their disease and thus improve their experience of the service. Evidence-based best practice suggests that patients should be offered accurate and timely information related to their disease. The addition of a renal CNS may help to allow patients to make informed choices regarding their treatment modality.
Step 5. Define the new model of care and the advanced practice nurse's role
Step five is the actualization of step 4 in which the new model of care outlined from stakeholder strategy meetings may now be formalized into clearly defined roles.
As seen in many other fields, advanced practice nursing has been shown to have a significant impact on the quality of life, reduced mortality and decreased costs. In the case of specialist nephrology nurses, there are many avenues including vascular access, HD, anemia and palliative care. The PEPPA framework has been utilized in over 16 countries internationally and is considered best practice for the introduction of new APN roles within a given healthcare system.
Step 6. Plan implementation strategies.
Step 6 is considered a continuation of step 5 in which both the architects of change and obstacles to it are fleshed out. This will ensure the system is ready to introduce the newly defined roles. Critical to its success, strategic meetings are again held to identify any potential barriers and relevant facilitating factors. Bryant-Lukosius and Di Censo (2004) suggest a lack of clearly defined responsibilities as a major obstacle to the implementation of CNS roles in practice. Stakeholder meetings should include all multidisciplinary staff and allow for all members to discuss implementation of the new role as well as any obstacles they may face during the change process.
APN's are considered experts in their field and therefore require a minimum standard of education to ensure they are both fully prepared and can demonstrate competence in their area. The ICN suggests the minimum standard of education for advanced practice is the master's level or above. However, this is not always translated into reality.
As in the case of Saudi Arabia, no such education program currently exists. This may be a potential stumbling block for the success of the program. It is possible to train nurses within an institution via apprenticeships, for example, vascular access nurse training. However, these programs often pose additional problems. In general, institution-based apparen-ticeships are often physician-led and are therefore not necessarily nursing focused. Other potential issues surrounding this, and similar training programs relate to their quality and standardization to other institutions.
One predictor of success of introducing advanced nursing practice is their subjective confidence in their ability to perform at an advanced level. Such confidence comes from knowledge and the appreciation of their value among the multiple disciplinary team. Governing bodies such as the American Nephrology Nurses Association (ANNA) have educational arms and have developed post graduate training programs of varying levels to support its nurses in their chosen field. Administrative support is fundamental to the frameworks success. Such support comes in many ways. Once such area of support could be to facilitate the education of its nurses in countries that offer masters programs.
Identifying and creating clearly defined reporting structures for the new APN's is also essential for the achievement of framework goals. Particularly as APN's often report to both physician and nursing managers with both having competing expectations.
Step 7. Initiate advanced practice nurse role implementation plan
It is generally expected that all strategies from step 6 are put in place in sequential order i.e. stakeholders are made aware of the new APN role, new APN's have gained sufficient knowledge, education, and experience; and institutional policies and procedures surrounding the role are determined. However, this process can take years depending on the state of APN development. Movement through the development stage is therefore fluid as evaluation and re-evaluations take in to account the success and support of and for the role.
Step 8 and 9. Evaluate advanced practice nurse role and a new model of care and long-term monitoring of the advanced practice nurse role and model of care
Both steps are reflective in nature and involve investigating the impact of the new model of care. Areas of focus should include patient safety, patient satisfaction, and cost.
| Clinical Ladder|| |
The PEPPA framework is a proven method of integrating advance practice into health-care. However, successful implementation of any such framework is contingent on stakeholder acceptance. Nurse-physician collaboration is essential to the improvement of clinical outcomes including decreased mortality rates and better service satisfaction. Such collaboration is based on mutual respect and trust of each participants level of knowledge, expertise and on the acceptance that each side offers an equal contribution to the partnership. Nurses and physicians, although sharing a common goal often have differing perspectives on how to reach that goal. Nurses take a holistic approach to patient care, taking into account both the physical and psychological aspects of both illness and treatment. Physicians in contrast tend to be problem-focused relying on measurable disease characteristics. Traditionally physicians are seen at the top of the hierarchy and therefore feel they are the sole decision-makers with other members of the multi-disciplinary team there to fulfil their orders. As a result, nurses knowledge and expertise are often undermined and under-valued. Developing nephrology nurse's skills through further education will attempt to dispel some of these barriers. The introduction and development of institutional clinical ladders for nephrology nurses is one method of ensuring this.
To facilitate and encourage nurses to continually improve their skills and knowledge and aide in the recruitment and retention of nurses, clinical pathways were developed in the 1970's. Most of which were based on Benner's novice to expert model of competence. Benner, realizing the perpetually changing needs of acute healthcare and understanding that it was no longer possible to standardize the role of every nurse, she applied the Dreyfus model of skill acquisition to nurses. The model describes six levels of progression including novice; advanced beginner; competent; proficient and expert. Applying the model to a nephrology setting, the ANNA, the Renal Society of Australia and the British Renal Society have all stipulated within their scope of practice guidelines, that one must exhibit certain skills and achieve various competencies at varying levels of experience. Areas' in which the clinical ladder often focus include clinical behaviors; patient education; leadership, teamwork and collaboration; communication, knowledge development and professional behavior. [Figure 3]. is an example of a potential nephrology clinical ladder.
|Figure 3: Modified version of the American Nephrology Nurses Association revised nephrology nurses' clinical ladder, (Cote and Burwell, 2007).|
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| Conclusion|| |
Despite the wealth of evidence advocating for the integration of advanced nursing practice into all aspects of healthcare and as a World Health Organization recommendation, it is unfortunately not established practice in Saudi Arabia. Exposure to clinical practice is limited in Saudi Arabian nurse training programs with many students receiving little to no patient contact until they enter their internship year. This gap in clinical practice may have a potentially negative impact on Saudi nurses' ability to cope with the professions high demands., Greater emphasis on taking a more comprehensive and holistic approach to nurse training may help diminish some apprehension toward caring for the needs of the most vulnerable members of society. Improving inter-disciplinary collaboration has been shown to improve patient outcomes while at the same time increasing job satisfaction and staff retention., The introduction of further education programs relevant to renal nurse specialist posts will encourage better physician acceptance of nursing expertise. This will also help to tackle the issue of low job satisfaction and have a positive impact on health outcomes.,
Currently, steps are in progress to introduce advanced speciality nursing practice programs at the master's level and higher through some of the well-established Universities within the Kingdom. However, these courses are in the early phase of development and will require some years before becoming established. Introducing the PEPPA framework within the context of Saudi Arabia may help support the development of advanced nursing practice which will have a positive impact on retention of local nursing personnel and improved patient outcomes.
Conflict of Interest: None declared.
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Ms. Theresa M Garvey
King Faisal Specialist Hospital and Research Center, P. O. Box 3, Riyadh
[Figure 1], [Figure 2], [Figure 3]
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