http://hdl.handle.net/10468/83 2013-05-19T12:50:07Z http://hdl.handle.net/10468/728 Symptom burden: A forgotten area of measurement in inflammatory bowel disease Farrell, Dawn; Savage, Eileen Inflammatory bowel disease collectively known as Crohn's disease and ulcerative colitis are chronic inflammatory diseases of the digestive tract. Periods of active and inactive disease are common along the trajectory of this illness. A range of symptoms such as fatigue, diarrhoea and abdominal pain are experienced and are often very debilitating in nature resulting in significance interference in daily life. Despite this, to date research in the area of symptoms remains an underexplored topic. This paper aims to discuss current approaches to symptom assessment in IBD and the potential to measure symptom burden in further research, in order to gain a greater understanding into the experiences of individuals with IBD. 2012-10-01T00:00:00Z http://hdl.handle.net/10468/883 Advanced practice nursing for enduring health needs management: a global perspective Koskinen, Liisa; Mikkonen, Irma; Graham, Iain; Norman, Linda D.; Richardson, Jim; Savage, Eileen; Schorn, Mavis Advanced practice nursing expertise has been acknowledged worldwide as one response to the challenges arising from changes in society and health care. The roots of advanced practice nursing education are at the University of Colorado where the first known programme started in 1965. In many countries advanced practice nurses (APNs) have taken responsibility for routine patient care formerly carried out by physicians in order to reduce their workload. However, more and more, APNs have taken responsibility for new service areas and quality programmes not previously provided. Chronic disease management is one of these new service areas because long-term diseases are increasingly challenging service systems globally. This article is based on an international APN partnership. The aim of the article is to describe how the partnership will design a 15 ECTS credit course on Enduring Health Need Management as a cross-cultural collaborative endeavour. The adaptation of an inquiry based learning framework will be described drawing on four main principles of the theory: authentic learning communities; student encouragement in analysing gradually more complicated problems; networking in knowledge creation and; student engagement and activity. The cross-cultural online course aims to increase APNs' intercultural competence as well as their global and international work orientation. 2012-07-01T00:00:00Z http://hdl.handle.net/10468/741 Challenges in recruiting participants in a multi-centre study on symptom experiences and self care strategies of bowel symptoms following colo-rectal surgery Landers, Margaret; McCarthy, Geraldine; Savage, Eileen Aim: The purpose of this paper is to present some of the challenges found to be problematic in recruiting individuals following sphincter saving surgery for rectal cancer for a multicentre study. While the focus of the study is on symptom experiences and management of bowel symptoms following colo-rectal surgery, the paper will concentrate solely on the challenges experienced in recruiting a sample for the study. Background Recruitment of an adequate number of participants is a challenge for researchers in any area of research involving patients. Enrolment of patients treated for rectal cancer poses particular challenges because the total population of this group in a given country can be small. The use of multiple centres was required to obtain the required number of participants for the current study. Findings: In multicentre studies, researchers can encounter substantial challenges in obtaining ethical approval, accessing clinical sites and gaining direct access to patients. These challenges are embedded in a convoluted process involving many systems of communication, which can vary from one centre to another. Conclusions: The process of obtaining ethical approval is prolonged in the absence of a central ethical review committee. A review process based on a standard application for researchers seeking ethical approval for multi- centred studies central is necessary. Establishing and maintaining access to clinical sites requires co-operation from many individuals during the development of the proposal and continuing throughout the data collection process. 2012-05-01T00:00:00Z http://hdl.handle.net/10468/1080 Protecting family interests: an interview study with foreign-born parents struggling on in childhood cancer care Pergert, Pernilla; Enskär, Karin; Björk, Olle; Ekblad, Solvig; Andrews, Tom Sweden's population is gradually changing to become more multiethnic and diverse and that applies also for recipients of health care, including childhood cancer care. A holistic view on the sick child in the context of its family has always been a cornerstone in childhood cancer care in Sweden. The purpose of this study was to gain knowledge about the experiences and main concern of foreign-born parents in the context of paediatric cancer care. Interviews were performed with eleven foreign-born parents and data were analysed using a classic grounded theory approach. Foreign-born parents often feel in a position of powerless dependence, but family interests are protected in their approaches to interaction with healthcare staff , through cooperation, contesting, and reluctant resigning. Healthcare staff need to listen to foreign-born parents and deal with their concerns seriously to prevent powerless-dependence and work for trustful cooperation in the common fight against childhood cancer. 2012-02-01T00:00:00Z