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Caring for a patient with still's disease.

A student nurse feared she would be out of her depth when caring for an elderly patient with Still's Disease. But with good support from her team leader, she built a trusting relationship with him, working in partnership to provide safe care.

Over the last two years, I have had the opportunity to encounter and observe a range of nursing practices, procedures and actions that comply with my scope of practice as a student nurse. (1) Near the end of my first year, I spent some weeks in both a surgical and a rehabilitation ward at a regional hospital. The contrast between these two practice areas was marked. In the surgical ward, acutely unwell patients could expect to recover their health and mobility soon after surgery, while those in the rehabilitation ward faced a long process of recovery as they learnt to care for themselves again after debilitating events like falls or strokes.

This article aims to analyse the interaction I had with a patient, *Robert, admitted to the rehabilitation ward following a fall. Robert was an 87-year-old Maori gentleman who had Still's disease (see information box, p13) It focuses on his lifespan development, initiation of the therapeutic relationship, the barriers to communication, and the strategies and skills used.

Caring for Robert

At the nursing hand-over, I was allocated Robert for my next shift. I tried to recall what I knew about arthritis. I had some knowledge of osteoarthritis and how it presented, but knew nothing about Stills disease. Having had no previous contact with Robert, I had no preliminary thoughts, feelings or expectations of him as an individual. (2)

After introducing myself and explaining why I would be helping with his care, I was struck by his frailty and incapacity. He was lying in a supine, semi-foetal position, presumably as the result of contractures due to his arthritis. He needed to be re-positioned to the right lateral recumbent position so essential nursing cares could be carried out. We spoke about the agreed plan of care and shared information about his health status, which for me generated an understanding and respect for Robert's right to give informed consent, (3) as well as establishing what would become a trusting, open and honest relationship.

The goal for Robert during his hospital stay was to mobilise him, with support from the health care team, to increase his independence. It was important to encourage and support Robert in undertaking tasks independently, eg activities of daily living. The ultimate aim was to enable Robert to return home and lead as independent a life as possible, given his current disease status.

As Robert was 87, I was conscious of his psychosocial stage--integrity versus despair --and the impact his condition would play in maintaining integrity while avoiding despair. (4) While originally conceived as a sense of mortality, Erikson's eighth stage of development (for those aged over 65) focuses on whether an individual perceives their life to be full and complete--the perfect life (integrity). (5) Equally, despair results from an individual's feeling of unresolved or unfulfilled potential--"my life has been a waste of time or there are things I need to do before I die".

It was easy to see that ageing, along with a gradual loss of function from childhood due to the abnormalities and deformities caused by Still's disease, had created physical and social losses for Robert. Did he place less value on his life and was he just waiting for the inevitable, leading to despair? Robert had always been dependent on others, but his outlook was positive. His acceptance of his chronic disease status had enabled him to live a comparatively independent life, even living in his own home.

While my relationship with Robert was new, through our brief interaction I gained a sense of both his physical and emotional loss. I felt it was important to empathise, as opposed to sympathise, during this early stage of our relationship, so I could provide Robert with understanding and support.

As a first-year nursing student, I had no previous experience of repositioning a patient with such progressive and debilitating arthritis. I was acutely aware of my limitations. (6) I recalled previous experiences I had had repositioning a palliative care patient; the disease processes were completely different but there were similarities in the level of care required. Robert needed our help to reposition himself, so his linen and night gown could be changed. I recognised my limitations and communicated these to the registered nurse (RN) when seeking assistance. We needed to work as a team to achieve Robert's personal cares and to prevent him harm.

As I spent more time with Robert, I realised the extent of his arthritis and the reduced range of movement through his joints. There was stiffness and swelling at Robert's synovial joints, especially his knees and the interphalangeal joints of his fingers. I also looked for other symptoms associated with his condition, such as the commonly encountered, salmon-coloured rash. There was no rash present--I later learnt this symptom was usually more evident during "flare-ups" and would have only been present during Robert's childhood (see reference 2 in information box, right). Identifying that Robert's range of movement had reduced significantly was important when considering how to reposition him, especially when we needed him to assist us. We also had the potential to cause him pain or discomfort when his affected limbs were inadvertently straightened during the procedure.

Assessing Robert's pain

As part of my nursing assessment, I included a comprehensive pain assessment using an analogue scale to judge Robert's current level of pain and what he experienced during nursing cares. (7) There are, of course, any number of pain assessment tools and all are equally effective at assessing the subjective nature of a patient's pain. According to one definition, pain is whatever the patient says it is, occurring when they say it does. (8) Robert identified his current level of pain at zero on the pain scale because he had recently received his non-steroidal anti-inflammatory (NSAID) and analgesic medication. When he was previously turned or repositioned for essential nursing care, he experienced negligible pain and it didn't give him cause for concern. He said his experiences of pain had decreased since childhood and early adulthood, as he had become accustomed to the discomfort. He told me his pain threshold had increased over time. Clearly, pain experiences are unique to each individual and Robert was no different. Pain early in Robert's disease was to be expected, due to pressure caused by extensive swelling and inflammation within the effected joints (see reference 3 in box above).

I was conscious of my professional duty of care as a student nurse and I was mindful that, while not directly accountable, I was responsible for the care I gave. Robert's responses and my assessment of the situation led me to believe it was a safe and appropriate time to reposition him, with RN assistance. Having discussed with her our plan of action, I gathered the correct mobility equipment--a "Slippery Sam" slide sheet--for us to use. The RN was the team leader as she had the experience and skill, and was also accountable for Robert's care; I was learning and observing the skills I would need to eventually become a safe and competent RN myself.

With Robert in the supine position, I asked the RN to help me reposition him to the right lateral recumbent position. Robert had already identified this as the most comfortable position for him. Because we might expose Robert while turning him, pulling the curtains round his bed and keeping him covered during this procedure helped us maintain his privacy and dignity. (6) The RN and I used lay language as we explained to Robert what we were doing, so he was fully informed and understood the nature of the care being provided. Throughout my encounter with Robert, I was able to provide individualised patient care without imposing my expectations on him. (9) This was an important consideration, especially as it would have been easy for the RN and I to "do" care, as opposed to negotiating and providing care.

The cultural imperative

The Treaty of Waitangi principles of participation, protection and partnership were integral to the way I cared for Robert. (9, 6) During the entire procedure, he and I developed a partnership as we worked together to safely reposition, assess and initiate pressure area care if required, change his linen and ensure his comfort once all cares were completed.

Protection was adhered to because Robert was fully informed of what was happening. Through on-going discussion between me, Robert and the RN, we were able to safeguard each other's interests, both as professionals and as individuals providing and receiving care.

Participation was achieved, as everyone involved understood their respective roles, and Robert was empowered to make decisions as to how we were to support him during this hospital experience.

Patients who receive culturally safe care are more likely to take full advantage of the health care services offered them. (9) Consumers of health care have "the right to be treated with respect and to be provided with services that take into account different cultural values and beliefs". (4) It is now widely acknowledged that societal and political views have affected the health status of Maori. (9) Over the last 20 years, the Treaty of Waitangi has gradually become embedded within health service delivery, and is now seen a fundamental aid to improving the health status of Maori. Maori autonomy is slowly being addressed and Maori language, customs and taonga are becoming more widely accepted and respected within mainstream health services. This has allowed nurses to work together with Maori patients for the same common purpose and has improved the quality of health services available to them. (10) Barriers still exist, however, as is evident in the continuing health inequalities and lifespan disparities between Maori and non-Maori patients. (11)

Implications for my future practice

During my nursing studies, I have become more aware of how I am interacting with patients and how effective interactions have encouraged my professional growth. Reflective practice has allowed me to develop effective self- and time-management skills. (12) These skills have benefited my nursing practice, teamwork and ability to complete assignments. Having these skills has helped me manage ever changing demands and my ability to seek further information for planned nursing care.

If I should find myself faced with a similar clinical practice situation again, I would want to gain a deeper understanding of an individual's mobility status from the RN before becoming involved. I would seek additional knowledge on the different moving and handling techniques and how to undertake these safely. Having more knowledge about Still's disease and the different forms of arthritis would have been beneficial in understanding the limitations Robert faced. However, through the information and support received from the RN and my clinical practice tutor, I was able to respond to the situation effectively.

I was learning and observing the skills I would need to eventually become a safe and competent RN myself.

Through this experience, I have developed a greater appreciation for patient independence and the way nurses are able to encourage this through their nursing practice. In the future I would like to gain more subjective information from patients about their life experiences with whatever disease or condition they might have and their wellness/illness journey. This would better equip me with the knowledge and understanding to provide effective nursing care.

When Robert was first diagnosed with Still's disease, education and support were limited, and acceptance of this abnormality was narrower. Throughout his life, Robert has had to plan daily activities with periods of rest to prevent "flare-ups" (see reference 1 in box, p13). It was my goal to reposition Robert in a safe and effective manner with the assistance of an RN who was accountable for the care I provided. During the procedure, it was important to ensure Robert was safe and comfortable and this was achieved by actively listening to Robert, responding appropriately to his questions and ensuring I maintained a calm, confident and professional manner. The use of a pain assessment tool ensured the ethical principles of beneficence and non-maleficence were being adhered to, and the correct interventions were addressed to ensure Robert's safety.

I was initially apprehensive when told I would be involved in Robert's care, but interestingly I did not encounter any stressors that affected my nursing care. The RN was encouraging and provided the support and instructions I needed to complete the task. She commended me on my communication techniques with Robert and the reassurance I gave him. I was pleased to receive this feedback, as it had been my goal during this clinical placement to improve my professional communication skills and boost my confidence in clinical practice.

During this clinical placement I gained a greater understanding of how patient independence can be affected, not only by ageing but also by a chronic disease. This is an important aspect to consider when developing a nurse-patient relationship. My knowledge about the correct use of mobility equipment has expanded, as has my understanding of the role of the team in ensuring patient safety. My communication skills have been enhanced, along with my ability to elicit information using a range of communication skills.

* Robert is not the patient's real name.

This article has been reviewed by Western Institute of Technology visiting professor Martin Christensen and the co-editors of Kai Tiaki Nursing New Zealand.


(1) Nursing Council New Zealand. (2008) Registered Nurse: Scope of practice. Wellington: Nursing Council of New Zealand.

(2) Stein-Parbury, J. (2005) Patient and person. Sydney: Mosby Elsevier.

(3) Dimond, B. (2011). Legal Aspects of Nursing, 6th ed. London: Pearson Education.

(4) Potter, P. & Perry, A. (2009) Potter and Perry's: Fundamentals of Nursing (3rd ed). Sydney: Mosby Elsevier.

(5) (2012) Erikson's stages of development. Retrieved 07/07/2012.

(6) Burgess, M. (2008) A Guide to the law for nurses and midwives (4th ed). Auckland: Pearson, Prentiss Hall.

(7) Carr, J., Chanques, G., Cisse, M. et al. (2010) The measurement of pain in intensive care unit: Comparison of 5 self-report intensity scales. www. Retrieved 07/07/2012.

(8) McCaffery, M. (1999) Basic mechanisms underlying the causes and effects of pain. In: McCaffery, M. & Pasero, C. Pain: Clinical Manual. 3rd ed. St. Louis, Missouri: Mosby.

(9) Wepa, D. (2005) Cultural safety in Aotearoa New Zealand. Auckland: Pearson Prentice Hall.

(10) Nursing Council of New Zealand. (2011) Guidelines for cultural safety, the Treaty of Waitangi and Maori health in nursing education and practice. Wellington: Author.

(11) Blakely, T. & Simmers, D. (2011) Fact and Action Sheets on Health Inequalities. Retrieved 22/01/2013.

(12) Neilson, A., Stragnell, S. & Jester, P. (2006) Guide for reflection using the clinicaljudgement model. Journal of Nursing Education; 46:11,pp 513-516.

Kaitlyn Murray is a third-year nursing student at the Western Institute of Technology in New Plymouth. This article is based on an essay she wrote as a first-year student, for which she received a pass with distinction.
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Title Annotation:practice
Author:Murray, Kaitlyn
Publication:Kai Tiaki: Nursing New Zealand
Geographic Code:8NEWZ
Date:Feb 1, 2014
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