The author works on the Young Oncology Unit (YOU), at Christie Hospital, Manchester, within the area of Paediatric Oncology. The Units client group consists of young people aged 0-21 years. The hospital itself is a regional specialist centre for cancer and radiotherapy treatment, and patients attend as outpatients whenever clinically and demographically possible. Care is provided for inpatients and ambulatory patients by the same nursing staff.
As an enhanced practitioner, it is important to reflect on and critically evaluate care given, in order to identify areas requiring improvements in the provision of care. The assignment will focus on a practice-based problem, relating to a lack of support for patients and families attending for radiotherapy treatment in the paediatric ambulatory care setting. There will be a critical evaluation of the methods currently used, a review and analysis of the literature which exists in relation to the highlighted problem, an exploration of how practice could be enhanced in this area and change effectively implemented within current organisational constraints. The aim is to establish a nurse-led clinic to support children and their families through radiotherapy treatment and its subsequent effects, within the paediatric ambulatory care setting.
The term “ambulatory care” is a popular expression for day care provision,, being defined as :
“Health services provided on an outpatient basis to those who visit hospital or healthcare facilities and depart after treatment on the same day”. (Turner, 1998).
It is a bit of a misnomer in that non-ambulatory patients can receive ambulatory care.
The rational for selection of this topic is that problems have been highlighted in recent months, demonstrating a lack of information and support to patients and families from nursing staff, largely due to:
- chemotherapy treatments and oncological emergencies creating a higher dependency of patient, resulting in inpatients placing greater demands on the nursing staff’s time
- outpatients spending relatively little time on the ward
- staff sometimes perceiving radiotherapy treatment to be an easy option
It is however, vital to meet the needs of each individual patient and family, whether they are in hospital or receiving ambulatory care. Throughout the rest of the assignment the term “patient” will refer to the child and family as a unit.
Childhood cancer exerts an immense practical and psychological burden on the patient over many years. Advances in treatment, along with the continued push from government reports, (Platt report, DOH, 1959, Court report, Fit for the Future, DOH, 1976, The Welfare of Children and Young people in hospital, DOH, 1991, Children First, Audit Commission, 1993) has led to a higher profile for ambulatory care which sits comfortably with the philosophy of nursing children. (YOU, 1998).
When considering the provision of ambulatory care in a paediatric oncology environment, there are a number of specific objectives:
- to provide patients with expert medical and nursing care throughout the course of illness, whether that is as a long term survivor, or to the child’s death
- to have patients experience as little disruption of their lives as possible through treatment (Fieler, et al, 1996)
- to develop effective communication networks to prevent care becoming fragmented
- to manage time effectively for maximum patient benefit
- to provide continuous appropriate information and support, recognising that patients needs continually change as treatment progresses
However, there is little published research within this area (Glasper and Lowson, 1998), and this is disappointing given the large numbers of patients now attending for ambulatory care. Outpatient areas are no longer used as a dumping ground for nurses with difficult personalities and bad backs. (Laurent, 1992). It is now being recognised that it should not be second class, but an area of excellence in practice.
The literature primarily relates to adult oncology, but is still an effective indicator of how both young patients and their family react to radiotherapy treatment. A review of the literature consistently demonstrates only a small percentage of information is retained during a consultation, improvements in patient education vital, further information and support required in order to maintain positive outcomes and facilitate patients to participate in more self-care measures. (Schulmeister, 1991, Poroch, 1995, Hinds and Mood, 1995, Fieler, 1996, Hagopian, 1996, Hinds and Moyer, 1997). Poroch, suggests this is because radiation therapy, in comparison to other cancer treatments, seems to be disproportionately associated with misconceptions, misunderstandings and apprehension. This is undoubtedly true, many families arriving on the YOU with gross preconceived misconceptions relating to treatment. One recent example relates to a 5 year old boy who wouldn’t lie on the table because he was frightened of being sucked into the machine. Another example relates to a 15 year old young lady who commenced radiotherapy to the head and neck, which requires a mask to enable pinpoint accuracy of treatment to vital structures. She freaked as the mask was put on, thinking it would have to get hot in order to give the “radiation”. This was entirely her own misconception of treatment on hearing the word radiate. These two examples demonstrate the extent of support required by all patients not just young children. Although patients do rely on Doctors as a key source of information, nurses are seen as a viable source and are in a key position to provide support (Hinds et al, 1995), radiotherapy being primarily nursing initiatives rather than medical interventions.
There is an increasing government demand for patients, families and carers to receive clear information and assistance in a form they can understand about treatment options and outcomes available to them at all stages of treatment from diagnosis onwards” (DOH, 1995). This is especially important on the YOU, with many issues surrounding the rights of children and consent. Further research needs to be undertaken to determine how younger children may benefit from strategies such as audiotapes, videotapes or storybooks containing information in a form they can understand.
On the YOU, patients see a consultant weekly, but attend the unit daily so nursing staff can monitor the effects of treatment. Systematic assessment varies considerably according to service priorities, staff often being reactive rather than proactive in their approach to care. Schulmeister, 1991, indicates, that with the increasing complexity of outpatient care, and dwindling nursing resources, teaching all patients about all topics of importance is impossible. The enhanced practitioner is in a prime position to examine how innovative practice can be developed to meet individual needs.
The reality of nursing pressures mean we often accept the brave face shown, not having time to look beneath the surface. A review of the literature reveals the “hidden” experiences of adult patients receiving radiotherapy treatment, but is still an effective indicator of how families may react to radiotherapy treatment. Few existing studies have examined what happens when radiotherapy is over, yet this is the time when reactions are at their peak. A qualitative study of patients following completion of radiotherapy treatment, (Wells, 1998), found that despite considerable physical and emotional trauma, patients showed remarkable resilience and a profound reluctance to ask for help. This is often true on the YOU. The findings demand that we re-examine our styles of communication, consider how well we give information and listen to what is really happening. There is a need to provide greater consistency and continuity of care during radiotherapy, recognise the impact of the whole experience and respond to post treatment needs. One comment epitomising the extent to which distress often remains hidden from view came from a patient’s diary, which read:
“Everybody says I look well, but I feel like the placid duck pointing upstream- it looks quiet and serene, but under the water line it’s paddling away like hell”, (Wells, 1998).
Radiotherapy, whilst an effective mode of treatment, is undoubtedly stressful. As the vast majority of treatment is given in the ambulatory care setting, the location and frequency of treatments can significantly disrupt patterns of family life (Hinds and Moyer, 1997). Debilitating acute effects and anxiety surrounding the potential late effects of treatment compounds this. Anxiety is heightened further as radiotherapists need to inform patients of all the potential acute and late effects, prior to achieving informed consent, which can be devastating.
Radiotherapy remains as great a source of anxiety as it was 20 years ago. The literature suggests this is largely due to patients rarely reporting receiving support from professional caregivers, or finding some of the support unhelpful (Galbraith, 1995). Hinds and Moyer, 1997, determined patients experiences of support whilst receiving radiotherapy. A substantive theory of support emerged which showed that support is an interpersonal process embedded in an array of social exchanges which involves encountering support, recognising support and feeling supported. Three main types of support are encountered: being there, giving help and giving information. They concluded that professional support was mainly informational, with family and friends being the principle source of all types of support. Given the characteristics and quality of behaviours patients recognise as supportive, it is easy to understand why the literature consistently reports that health professionals in general are not seen by patients as providing support (Hinds and Moyer, 1997).
Moreover, as patient survival improves, the late effects of treatment emerge more forcefully, creating a major impact on the care and support required to meet the individuals ever growing needs. Radiotherapy can impede any organ in the beam from maturing beyond the stage of development when the organ was treated. In general this is related to the dose of radiation and the potential for further development of the organ. It only affects the area being treated and therefore the consequences will be different for each individual, but nevertheless, will have a great impact on their lives. Many effects will resolve with time, some will be permanent and distressing. Others will emerge many years after completion of therapy.
Late effects of radiotherapy treatment are the most formidable in children. (Kissen and Wallace, 1995). In this respect, childhood cancers are qualitatively and quantitatively unique. A 5 year old cured of cancer has over 70 years of life expectancy left, allowing the emergence of long term effects in the future, which wouldn’t have the same effect in a 70 year old cured of cancer with around 5 years of life expectancy left. This is important as by the year 2,000, it is estimated that 1 in 1,000 of our young adult population, between the ages of 20-29, will be survivors of childhood cancer (Meadows and Hobbie, 1986; Kissen and Wallace, 1995).
The nursing role in chemotherapy is largely well defined, but equal recognition has not been received within radiotherapy. The literature suggests it is difficult for the nurse to provide appropriate nursing interventions because of the vagueness of their role in radiotherapy, (Wengstrom and Haggmark, 1998), which lacks definition, clinical standards and nursing research (Downing, 1998). This is undoubtedly true, reflection on practice on the YOU highlighting that we have no definitive nursing roles in radiotherapy and no clinical standards to support quality care. Much work is needed so care can be properly validated, and the role developed, to ensure consistency of practice amongst staff. The future of ambulatory care is exciting due to the emergence of late effects and the continuing growth of outpatient care as the NHS attempts to deliver more health care within limited resources.
The enhanced practitioner needs to organise care so healthcare professionals are available to recognise the true impact of treatment and respond to it. This means giving information, symptom support and practical advice which is meaningful to each individual patient, whilst acknowledging one’s own limitations in practice. It is often assumed that all patients want and seek information. However, not everyone does. This may be difficult for nurses to accept, but it is equally important that the patient’s right not to receive information is respected if this wish is communicated.
One needs to think creatively and innovatively and find ways of developing and promoting clinical excellence in nursing outpatients (Marsden, 1992), that meet the holistic needs of the patient. A nurse-led clinic could be considered as the logical outcome of the expanded role of the nurse within ambulatory paediatrics. A review of the literature is complicated by the diversity of role titles, but indicates that the concept of the nurse-led clinic although not new, is just beginning its evolution within the hospital setting. (Glasper and Lowson, 1998). There needs to be more thought on how to create autonomous nurse-led practices. With vision and courage, the enhanced practitioner, as a highly skilled, motivated and dynamic practitioner, can create an improved service offering high-quality, responsive and continually developing healthcare, by exploring new horizons for themselves, their patients and the profession. (Lowry, 1996). A nurse-led clinic would create opportunities to assess patient needs prior to, during and following radiotherapy treatment, including long term follow up, changing the environment of care for patients and putting their difficulties and problems far higher on the agenda. (Moore, 1997).
Guerrero, 1994, established a nurse-led clinic for adult patients undergoing cranial irradiation, which appears to be the first example in oncology of transferring medical follow up of patients undergoing irradiation to a nurse based on- treatment clinic.
There are many opportunities and several constraints that would exist in implementing the change, and it is important they are considered to ensure a smooth change in practice. Exploring these areas prior to introducing the change would enable the enhanced practitioner to identify potential problems before they arise, and formulate plans to avoid or minimise them.
One such opportunity has resulted from the Scope of Professional Practice, and the Code of Professional Conduct (UKCC, 1992), which have assisted nurses in the move towards professional accountability and autonomy in practice. Nurses have the opportunity to extend their roles appropriately, absorbing activities into the holistic nature of nursing, informed by nursing values (Denner, 1995). Accountability issues could also be a possible constraining force to implementing change, with the current lack of definition and diversity of roles. Alongside the developing role, the enhanced practitioner would need to establish a recognised framework that encompasses accountability issues, and clarifies for nursing staff, fellow healthcare professionals and patients, the scope and remit of their role.
Educationally, there is a concern cited in the literature regarding the approach to preparation. In an evaluation of nurse-led care in accident and emergency departments, educational preparation ranged from an in-house course of a few days to a two- year nurse practitioner programme. (Dolan et al, 1997). There are many opportunities for personal and professional development, and continued lifelong learning support, which would be essential in the creation of a nurse-led clinic, to ensure staff receive effective training and development to carry out their role effectively. Indeed, it is the aim of the government that training and development plans are in place for the majority of health professional staff by April, 2000, in order to support the delivery of high quality, modern, effective healthcare in a fast changing world. (DOH, 1998).
If enhanced practice is to be nurse-led, the practitioner needs to identify who should carry out the role. Effective follow up of patients both in the long and short term, may cause severe disruption to the entire family. The development of satellite clinics and utilisation of nursing skills within the Community and District General Hospitals may be the most effective way to provide continued support to all patients. It is important for Staff to take ownership of their own roles, but this would require appropriate training and support. This could be achieved through a co-ordinator leading the service with specialist knowledge and skills in radiotherapy, with a specific remit for training and development and audit in order to monitor outcomes. This would facilitate the development of nursing skills not only within the Unit itself, but enable provision of shared governance.
The most important consideration is that the skills and knowledge required to fulfil the role are clearly acknowledged, and the role supported by an educational process set in a framework of clinical supervision. (Briggs, 1997).
A nurse-led clinic must have the support of the managers and organisation, which could be an opportunity as well as a potential constraint. The Trust would be keen to provide as much care as possible on an ambulatory basis, it being more cost-effective than hospitalising the patient. The shift from inpatient to outpatient care has focused attention on providing the highest quality care using the most efficient and productive means available. However, assessing productivity and workload measurement is difficult because of the number of variables that occur, including patient volumes, complexity of needs and the lack of definition of roles. (Medvec, 1994). One opportunity would be to fund the initiative with a review of the establishment, which could be possible as it changes to accommodate 7 day opening. The cost implication may then be minimised, but still not necessarily a cheap option. Patients would need adequate support, requiring more time than would be allocated in a traditional clinic, and staff would need appropriate training. It’s perceived benefits are that it may reduce some of the workload for medical staff, reduce waiting times in clinic, improve continuity of care and prevent admissions for certain preventative problems, but, may not reduce costs enormously as nurses would be identifying patient needs previously unmet, which may also lead to a higher number of referrals to other healthcare professionals.
There is little documented evidence of the benefits in the literature (Briggs, 1997), which provides good accounts of changes to practice, but few structured evaluations to demonstrate the stated benefits in practice. There would need to be a commitment to monitoring outcomes to provide an evidence base to service development, and ensure that limited resources are used appropriately. (Dolan et al, 1997). Griffiths, 1995, in examining the progress in measuring nursing outcomes, concluded there is a clear need for more research aimed at determining the contribution of nursing interventions to patient outcomes, which in the current economic and political climate, demand that nursing prove its value. Clinical Governance is another excellent opportunity, as it will ensure this is addressed.
As an enhanced practitioner, enlisting the support of medical staff is vital, as the success of such a clinic will depend on doctors recognising there are areas of clinical work well suited to the skills of appropriately trained nursing staff. Moss and McNicol 1995, demonstrated the need for consultants to rethink their roles, saying that nursing roles should be acknowledged, explored and developed for the patient’s benefit, and that unless the service faces up to the need to restructure and reorganise, everyone, especially the patients will be losers. The YOU has very supportive medical staff, who value the nurses contribution, and work collaboratively as part of a multi-disciplinary team. However, whilst the nursing role remains ill defined, unstructured and limited, practice cannot be enhanced nor further possible developments explored.
Parental involvement would also help to facilitate the change. They will need a clear understanding of the role, or may think of it as a cheap option or the loss of opportunity to see medical staff. Families themselves, also continually put nurses under pressure because they never want to stay on the unit for very long whilst attending as an outpatient. This would need careful negotiation to avoid frustration.
It is vital that changes are driven by the need to improve patient care and take place with a clear nursing focus, with clear objectives. Careful change management and evaluation must accompany developments, as must full dissemination of results. (Garbett, 1996).
The change, in order to be effective must be planned, not imposed. As a change agent, the enhanced practitioner would, having identified opportunities for change, build a readiness and commitment, create a climate for change and establish an internal capacity to sustain the change effort, evaluate and review it (Broome, 1998). One opportunity is that the unit is undergoing a period of great change. A recent extension has created separate facilities for the children and adolescent patients, through the development of a “Teenage” unit. Alongside this, the unit is moving from 5-7 day opening, with an increase in staffing to facilitate this. Staff are therefore currently motivated to change and the momentum needs to be maintained. The enhanced practitioner needs to make the most of these opportunities, to extend the support required and provide a better service for ambulatory patients. One of the potential constraints would be the possibility of extra workload for staff, but individual job descriptions could be written to clarify each individual’s role.
The enhanced practitioner would need to facilitate staff ownership during the change process in order to identify and break down sources of resistance, which could then be turned into a force for change. Acknowledging their contribution creates a trusting collaborative relationship, important in helping to alleviate any obstacles to proposed change. This discussion form is the first stage of Lewin’s change theory, known as unfreezing (Lewin, 1951), which helps to prepare people for change. Most people are motivated to change if they can see the perceived benefits. Focus can then be on the weakening of the objections and fears of the resisting forces, which could be looked at and addressed (appendix 2).
Effecting change is vital but not always easy to achieve. As an enhanced practitioner it is important to communicate effectively, as most difficulties in its management arise from failure to communicate effectively. A mix of an organic and mechanistic structure is essential to ensure a two-way flow of communication, and involvement from everyone concerned, to enhance commitment and minimise resistance, utilising a mechanistic approach to final decision making, to ensure action is taken to meet the objective within given time constraints. Implementing change can be a lengthy process and it is easy for staff to become disillusioned and de-motivated. One would minimise this with open communication, ensuring all staff were informed at all stages of progress being made.
The success of change, no matter how good the planning, cannot always be guaranteed. The enhanced practitioner would therefore monitor the effects of change, and prepare to alter or adapt plans as necessary, using ongoing communication to ensure the team continues to work towards the same goals. Problems can then be identified and addressed more quickly. Otherwise there is the danger that staff will revert back to previous practices, and the change be less effective. Continued support would be necessary to allow engraftment to take place. Lewin, 1951, identified this stage as the refreezing process, the final stage of the change process.
In conclusion, it can be seen that ambulatory care is developing a high profile in paediatrics, but research is needed so care can be properly validated. It is time for a more structured approach to developing the role of the nurse in radiotherapy, to ensure consistency in practice and high quality care for patients receiving care in the ambulatory setting. This includes detailed assessment of patients’ needs and service requirements, clear outlines of responsibility and scope of accountability, managerial support within an agreed educational programme and a commitment to the continuous evaluation of the role which would inform future development. There is scope for developing specialised areas of care, through innovations such as nurse-led clinics, and enhanced practitioners are ideally placed to be proactive and creative in designing services that best meet the holistic needs of the patient and family.
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