The ageing of the population is expected to lead to an increase in the prevalence of dementia. Providing support to informal caregivers is essential to promote their wellbeing and prevent serious caregiver burden. The aim of the study is to investigate whether differences occur between the initial and later stages of dementia in terms of (1) problems experienced by informal caregivers in the provision of care, (2) use of professional support by persons with dementia, (3) informal caregivers’ needs for additional professional support.
The data were collected within the framework of the Dutch National Dementia Program, which was instigated in 2005 by the Dutch Ministry of Health, Welfare and Sport to improve integrated care for people with dementia and their informal caregivers. This paper is based on data of a questionnaire survey among 1494 informal caregivers, collected between September 2007 and December 2008.
Most informal caregivers (98-99%) experienced problems in caring for a person with dementia, irrespective of the stage of the illness process. In later stages, informal caregivers more often experienced problems in their social networks. Most dementia patients (87-94%) received ambulatory professional support.
Since informal caregivers indicate a need for additional professional support in all stages of dementia, professional support should be provided during the entire illness process. Informal caregivers need advice on how to cope with symptoms of dementia, how to deal with behavior problems and receive more information about (early and advanced stages of) dementia and the supply of support.
Dementia; informal caregivers; illness stages; professional support; transition; survey.
This study examined spiritual coping (beliefs and practices) of depressed African American cancer patients through a comparison with depressed White cancer patients and non-depressed African American cancer patients.
Using mixed methods, 74 breast (n=41) and prostate (n=33) cancer survivors including 34 depressed and 23 nondepressed African Americans and 17 depressed Whites were interviewed. The interviews were audiotaped and transcribed. Qualitative data analysis identified themes that were coded. The codes were entered into SPSS software. The Fisher’s exact test was performed to examine group differences in self-reported spiritual coping.
Significantly more depressed African Americans questioned God when learning of a cancer diagnosis than the non-depressed African Americans (p=.03), but they did not differ from the depressed Whites in this regard (p=.70). Significantly more depressed African Americans reported having faith in God (p=.04), reading the bible (p=.02), and conversing with God (p=.01) than did the depressed Whites. They also reported praying alone (p=.01) more frequently than the depressed Whites who, on the other hand, reported praying with others (non-family members) together for one’s own health more frequently (p=.04).
Depression is associated with a deepening need for spirituality and it affects religious beliefs and practices more in African American than White cancer patients. Given its important role in the lives of African American cancer patients, spirituality may be utilized as a reasonable, culturally-based approach to better assess and treat depression in these patients.
African American; cancer; depression; race; pray; religion; spirituality.
Nurses are frequently exposed to dying patients and death in the course of their work. This experience makes individuals conscious of their own mortality, often giving rise to anxiety and unease. Nurses who have a strong anxiety about death may be less comfortable providing nursing care for patients at the end of their life. This paper explores the literature on death anxiety and nurses’ attitudes to determine whether fear of death impacts on nurses’ caring for dying patients. Fifteen quantitative studies published between 1990 and 2012 exploring nurses’ own attitudes towards death were critically reviewed. Three key themes identified were: i). nurses’ level of death anxiety; ii). death anxiety and attitudes towards caring for the dying, and iii). death education was necessary for such emotional work. Based on quantitative surveys using valid instruments, results suggested that the level of death anxiety of nurses working in hospitals in general, oncology, renal, hospice care or in community services was not high. Some studies showed an inverse association between nurses’ attitude towards death and their attitude towards caring for dying patients. Younger nurses consistently reported stronger fear of death and more negative attitudes towards end-of-life patient care. Nurses need to be aware of their own beliefs. Studies from several countries showed that a worksite death education program could reduce death anxiety. This offers potential for improving nurses’ caring for patients at the end of their life.
Attitudes; death anxiety; end of life care; spirituality; thanatophobia.
The language barrier is a significant obstacle for nurses who are not native English speakers to obtain information from international journals. Freely accessible online machine translation (MT) offers a possible solution to this problem.
To explore how Japanese nursing professionals use online MT and perceive its usability in reading English articles and to discuss what should be considered for better utilisation of online MT lessening the language barrier.
In total, 250 randomly selected assistants and research associates at nursing colleges across Japan answered a questionnaire examining the current use of online MT and perceived usability among Japanese nurses, along with the number of articles read in English and the perceived language barrier. The items were rated on Likert scales, and t-test, ANOVA, chi-square test, and Spearman’s correlation were used for analyses.
Of the participants, 73.8% had used online MT. More than half of them felt it was usable. The language barrier was strongly felt, and academic degrees and English proficiency level were associated factors. The perceived language barrier was related to the frequency of online MT use. No associated factor was found for the perceived usability of online MT.
Language proficiency is an important factor for optimum utilisation of MT. A need for education in the English language, reading scientific papers, and online MT training was indicated. Cooperation with developers and providers of MT for the improvement of their systems is required.
Japanese nurses; language barrier; nursing literature; online machine translation; usability; questionnaire.
The aim of this study was to explore relatives’ existential concerns when caring for a seriously ill family member as well as to describe interventions that meet these concerns.
In this integrative literature review we assessed and classified 17 papers, 12 qualitative and 5 quantitative. Literature was sought in the databases Cinahl, PubMed, Psykinfo and Web of Science in September 2009 and in March 2010. Search terms used in different combinations were: family, family caregiver, next of kin, relatives, palliative, palliative care, end-of-life care, existential, spirit*. Data were redrawn from the papers results/findings, and synthesized into a new descriptive content.
The results were categorized from 13 papers exploring relatives’ important existential concerns and 4 papers describing interventions aimed to support them in the existential area. A majority of the reviewed papers had been written in Sweden and concerned relatives of patients with cancer. One overarching theme, living in the presence of death, and three categories: responses to life close to death; support when death is near; and beyond the presence of death were created.
There is an urgent demand for large-scale studies using accurate methodology, as well as a need to design qualified investigations regarding the effects of various interventions, and to determine which interventions are the most effective in supporting relatives who experience existential distress manifested physically and/or psychologically. There is also a considerable demand for educational interventions among professionals in various healthcare settings to increase their knowledge regarding existential concerns among relatives.
Cancer; end-of-life care; family; incurable illness; nursing; review.
Epidemiologic data indicate that chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality. Patients with poorly managed COPD are likely to experience exacerbations that require emergency department visits or hospitalization—two important drivers contributing to escalating healthcare resource use and costs associated with the disease. Exacerbations also contribute to worsening lung function and negative outcomes in COPD. The aim of this review is to present the perspective of nurse practitioners and physician assistants in terms of providing the pharmacologic and non-pharmacologic modalities needed to treat current and prevent future exacerbations. Major respiratory guidelines recommend treatment of acute exacerbations with short-acting bronchodilators, oral corticosteroids and antibiotics, as appropriate. Supplementary oxygen and/or ventilatory support may also be beneficial to selected patients. Treatments to minimize the risk of future exacerbations should include maintenance pharmacotherapies, risk-reduction measures (e.g. smoking cessation, influenza and pneumonia vaccinations), pulmonary rehabilitation, self-management support and follow-up care.
COPD; exacerbations; follow-up care; nurse practitioner; physician assistant.
Cognitive impairments influence the possibility of persons with dementia to remember daily events and maintain a sense of self. In order to address these problems a digital photo diary was developed to capture information about events in daily life. The device consisted of a wearable digital camera, smart phone with Global Positioning System (GPS) and a home memory station with computer for uploading the photographs and touch screen. The aim of this study was to describe professional caregiver’s perceptions on how persons with mild dementia might experience the usage of this digital photo diary from both a situation when wearing the camera and a situation when viewing the uploaded photos, through a questionnaire with 408 respondents. In order to catch the professional caregivers’ perceptions a questionnaire with the semantic differential technique was used and the main question was “How do you think Hilda (the fictive person in the questionnaire) feels when she is using the digital photo diary?”. The factor analysis revealed three factors; Sense of autonomy, Sense of self-esteem and Sense of trust. An interesting conclusion that can be drawn is that professional caregivers had an overall positive view of the usage of digital photo diary as supporting autonomy for persons with mild dementia. The meaningfulness of each situation when wearing the camera and viewing the uploaded pictures to be used in two different situations and a part of an integrated assistive device has to be considered separately. Individual needs and desires of the person who is living with dementia and the context of each individual has to be reflected on and taken into account before implementing assistive digital devices as a tool in care.
“Ageing in place”; assistive digital device; dementia; factor analysis; perceptions.
Patients’ non-adherence to immunosuppressant treatment after organ transplantation may lead to organ failure, graft loss and death. Non-adherence among Swedish kidney transplant recipients has not previously been studied. Hence the aim of this study was to explore non-adherence among Swedish kidney transplant recipients by using self-report instruments as well as testing the hypothesis that there is a difference in self-reported symptoms, beliefs about medicine and social support between respondents with or without self reported non-adherence.
Materials and Methodology:
In the present cross sectional study 250 renal transplant recipients participated by replying to a questionnaire. Two validated instruments were included, one on beliefs about medicine (the BMQ©), the other on nonadherence (the BAASIS©).
Only 46 % never failed to follow the medical treatment with respect to taking the drugs, dosage or timing (>2 hrs from prescribed time). Timing was the most frequently reported deviation (48 %). Forty-seven patients (16 %) had failed taking at least one dose of the prescribed immunosuppressants during the past four weeks. Four individuals had reduced the prescribed doses. Only one reported taking a ‘drug holiday’. Nine participants reported stronger concerns than necessities for immunosuppressive medication. For the BMQ the necessity scores were extremely high while the scores for concern were low. Risk behaviour identified by the BAASIS had no association in risk attitudes as identified in the BMQ. The only factor relating to non-adherence was lack of social support (p=0.022).
In general adherence was high. Identification of the exceptions remains a challenge.
The BAASIS; the BMQ; immunosuppression; kidney transplant; life-long treatment; non-adherence; self-report instruments.
There is a need for instruments combining measurements of symptom distress and well-being in the organ transplant population.
The aim of this study was to describe the development and initial psychometric evaluation of a measure of symptoms and well-being in organ transplant recipients labelled the Organ Transplant Symptom and Well-being instrument (OTSWI) and to provide descriptive data on these matters.
In this cross sectional survey, the study sample (n=185) completed several measures including demographic information, the Short form- 36 items (SF-36), and the OTSWI to assess concurrent validity by exploring relationships between OTSWI and measures of health related quality of life (HRQOL). The expected scale dimensionality of the OTSWI questionnaire was examined both by the confirmatory multi-trait analysis program and by explorative principal component analysis (with oblique, varimax rotation). Scale reliability was further estimated using the Cronbach’s alpha.
There were eight factors built up from twenty of the initial fifty one items and were labelled fatigue, joint and muscle pain, cognitive functioning, basic activities in daily life, sleeping problems, mood, foot pain and economy. For the remaining twenty-one items no consistent and meaningful factors could be found leading to relevant symptoms acting as single items. All eight factors had satisfying internal convergent validity as well as good item-scale discriminatory validity or ‘success rate’.
Results support the internal consistency, reliability and concurrent validity of the OTSWI as an instrument to measure symptom distress and well-being in relation to organ transplantation. (Word count 244).
Organ transplantation; symptoms; psychometric evaluation; health related quality of life; well-being; nursing.
The care that intra-operative nurses perform has to be based on scientific knowledge. It is therefore vitally important that they have access to different databases and the Internet, as well as knowledge of the search procedure to find evidence for best practice. This means that specialist nurses should be proficient in the search procedure, interpretation of data, and implementation of available knowledge.
The aim of this study was therefore to highlight the search strategies of specialist student nurses for finding scientific knowledge with regard to specific clinical issues. An additional aim was to assess their ability to critically evaluate scientific articles.
The participants, n 16, all students enrolled in a university programme for specialist nursing in anaesthesia care, were required to find support for six questions, by using scientific knowledge databases. The tasks that required support are related to their future profession and were divided into three main areas: pre-, intra-, and post-operative care. Two distinct questions for each main area had to be answered. The data was analysed quantitatively using manifest content analysis as a basis.
This study reveals that the student nurses mostly used the CINAHL and PubMed databases to search for answers related to the areas in focus. The keywords the participants used differed between the individuals and were applied more frequently than MESH terms. In addition, the critical evaluation of articles of scientific value that were found was not optimal. The study demonstrated that most of the participants were unable to complete all the required tasks. With regard to the initial questions, all 16 participants provided answers, while only eight student nurses completed the final questions.
The specialist student nurses in this study used the databases Chinal and PubMed to find scientific knowledge with the help of MESH-terms and keywords. Further research is needed to understand how education of the specialist student nurses should be carried out, in order to optimise their search strategies and critical evaluation of scientific articles.
Information retrieval; search strategies; nurses.
Pain assessment in persons with dementia is well known as a challenging issue to professional caregivers, because of these patients´ difficulties in verbalising pain problems. Within municipal dementia care in Sweden, pain assessment has become problematic for registered nurses, as they have entered a new role in their nursing profession, from being clinical practitioners to becoming consultant advisers to other health care staff.
To present municipal registered nurses´ view of pain assessment in persons with dementia in relation to their nursing profession as consultant advisers.
Purposive sampling was undertaken with 11 nurses invited to participate. Data were collected by focus groups. Qualitative content analysis was used to analyse the data.
Four categories were identified to describe registered nurses´ view of pain assessment: estrangement from practical nursing care, time consuming and unsafe pain documentation, unfulfilled needs of reflection possibilities, and collaboration and coordination.
The performance of pain assessment through a consultant advising function is experienced as frustrating and as an uncomfortable nursing situation. The nurses feel resistance to providing nursing in this way. They view nursing as a clinical task demanding daily presence among patients to enable them to make accurate and safe assessments. However, due to the consultative model, setting aside enough time for the presence seems difficult to accomplish. It is necessary to promote the quality of systematic routines in pain assessment and reflection, as well as developing professional knowledge of how pain can be expressed by dementia patients, especially those with communication difficulties.
Municipal dementia care; pain assessment; registered nurses.
To elucidate parent´s experience of having had a baby with colic four years previously and of how the colic and care influenced the family in a long-term perspective.
Methodology and Participants:
A qualitative inductive follow-up study with 13 individual and one focus group interview including four parents. Altogether ten mothers and seven fathers representing 12 families, who had been interviewed when they were in the midst of the colicky period four years ago, were in the present study interviewed between December 2010 and May 2011. Parents’ narratives were analysed using content analysis.
Parent´s memories of the exhausting colic period were vivid, but when the colic had healed the family relationships also healed. Although it had taken longer time for some parents to attach to their child they now experienced a close relationship with their four year old child and felt confident in their role as parent. The colic scream was still unbearable and evoked negative feelings in the parents. Parents had decreased confidence in Child Health services and made suggestions for improvements in the health care approach. Most of all they wished for an effective treatment of infantile colic.
The family relationships were healed and the colic left only few residual symptoms but parents still had decreased confidence in the Child Health Center. Consequently, there is a need to raise awareness to parents’ situation when having a child with infantile colic.
Baby; content analysis; crying; infantile colic; interviews; long term effects; parents’ experiences.
The aim of this study is to describe current post-operative pain management practices for patients with dementia and hip fracture in Finland. Older adults with hip fracture are at high risk of under treatment for pain, especially if they also have a cognitive disorder at the stage of dementia. Previous studies have provided limited information about the quality of acute pain treatment for persons with dementia. In this study data concerning current pain management practices was collected by questionnaire from 333 nursing staff. They worked in surgical wards of seven universities and ten city-centre hospitals. The response rate to the questionnaire was 53%. The data was analysed using factor analysis and parametric methods. Half the respondents (53%) considered that post-operative pain management was sufficient for patients with dementia. Less than one third of respondent nurses reported that pain scales were in use on their unit: the most commonly used scale was VAS. The use of pain scales was significantly related to the respondents’ opinion of the sufficiency of post-operative pain management in this patient group (p<0.001). The findings can be utilised in nursing practice and research when planning suitable complementary educational interventions for nursing staff of surgical wards. Further research is needed to explain the current situation of pain management practices from the viewpoint of patients with dementia.
Pain; dementia; hip fractures; post-operative pain; nursing staff.
To review the literature on the use of simulation in the development of non-technical skills in nursing
The potential risks to patients associated with learning 'at the bedside' are becoming increasingly unacceptable, and the search for innovative education and training methods that do not expose the patient to preventable errors continues. All the evidence shows that a significant proportion of adverse events in health care is caused by problems relating to the application of the 'non-technical' skills of communication, teamwork, leadership and decision-making.
Simulation is positively associated with significantly improved interpersonal communication skills at patient handover, and it has also been clearly shown to improve team behaviours in a wide variety of clinical contexts and clinical personnel, associated with improved team performance in the management of crisis situations. It also enables the effective development of transferable, transformational leadership skills, and has also been demonstrated to improve students' critical thinking and clinical reasoning in complex care situations, and to aid in the development of students' self-efficacy and confidence in their own clinical abilities.
High fidelity simulation is able to provide participants with a learning environment in which to develop non-technical skills, that is safe and controlled so that the participants are able to make mistakes, correct those mistakes in real time and learn from them, without fear of compromising patient safety. Participants in simulation are also able to rehearse the clinical management of rare, complex or crisis situations in a valid representation of clinical practice, before practising on patients.
Communication; decision-making; non-technical skills; nurse education; simulation; situation awareness; teamwork; team training; interprofessional.
The present study addresses factors that contributed to explaining the variance in health-related quality of life (HRQOL) one year after myocardial infarction, considering both illness-related and health-promoting factors. The aim was to elucidate the influence of depression, fatigue, optimism and sense of coherence on HRQOL. The sample consisted of 95 persons who had been treated for myocardial infarction. Correlation and multiple regression analyses were performed. The results showed that depression, fatigue, optimism and sense of coherence variables were all correlated with both the physical and the mental dimensions of HRQOL. In two multiple regression analyses where the physical component score (PCS) and the mental component score (MCS) were the criterion variables, fatigue contributed to the explained variance in the PCS (p< 0.001), and both depression (p< 0.01) and fatigue (p< 0.01) contributed to explained the variance in the MCS, after controlling for age and gender. To conclude, fatigue was the most significant variable associated with HRQOL, which was interpreted as having the following clinical implication: When a person suffers from post-myocardial infarction fatigue, this must be addressed first. Clearly, it is time to take the problems of patients who suffer from post-myocardial infarction fatigue seriously. It is of vital importance to develop and evaluate fatigue relief strategies in cardiovascular nursing and to test them in interventional studies. This does not exclude investing in health-promoting factors, e.g. sense of coherence, in coronary care interventions. Intervention strategies focusing on both illness-related and salutogentic factors may be optimal. This is a question for further research.
Health-related quality of life; fatigue; myocardial infarction; salutogenesis.
Advocacy; nursing; organ donation; psychometric evaluation.
Colorectal cancer is one of the most common types of tumour in the world. Treatment side effects, together with the tumour symptoms, can result in a ‘symptom burden’. To understand the patient’s burden during chemotherapy treatment and plan effective symptom relief there is a need for more knowledge about the experience of symptoms from the patients’ perspective.
The study was designed to qualitatively identify and describe the most common symptoms among patients treated for colorectal cancer, and discover whether there are barriers to reporting symptoms.
Thirteen Swedish patients diagnosed with colorectal cancer and treated with chemotherapy were interviewed face-to-face. The interviews were audio-taped and transcribed verbatim. The transcripts were analysed by following the principles of qualitative content analysis.
Nine symptoms/forms of distress were identified. Those most frequently expressed were fatigue, changed bowel habits, and affected mental well-being, closely followed by nausea, loss of appetite and neurological problems. Of particular note were the affected mental well-being, the magnitude of the neurological problems described, the symptoms related to skin and mucous membrane problems, and the reports of distressing pain. Barriers to symptom control were only expressed by the patients in passing and very vaguely.
This study confirms other reports on most common symptoms in colorectal cancer. It also highlights the early onset of symptoms and provides data on less well-studied issues that warrant further study, namely affected mental well-being, the magnitude of the neurological problems and symptoms related to the skin and mucous membranes. Nurses need to be sensitive to the patients’ need presented and not only noting symptoms/distresses they have guidelines for.
Colorectal cancer; distress; qualitative content analysis; symptoms.
The aim of this study was to illuminate the meanings of being critically ill in a sound-intensive ICU patient
room, as disclosed through patients’ narratives. Patient rooms in ICUs are filled with loud activity and studies have
revealed sound levels comparable to those of a busy road above the patient’s head. There is a risk that the sound or noise
is disturbing and at worst a major problem for the patient, but there is a lack of knowledge concerning the patients’ own
experiences. Thirteen patients were asked to narrate their experiences of the sound environment in ICU patient rooms. The
interviews were analyzed using a phenomenological- hermeneutical method inspired by the philosophy of Ricoeur. Six
themes emerged from the analysis. Conclusion: The meanings of being a patient in a sound- intensive environment were
interpreted as never knowing what to expect next regarding noise, but also of being situated in the middle of an
uncontrollable barrage of noise, unable to take cover or disappear. This condition is not to be seen as static; for some
patients there is movement and change over time. The meanings indicate that the unpredictable shifts between silence and
disturbing sounds stress the critically ill patient and impede sleep and recovery. Our findings indicate the need to reduce
disturbing and unexpected sounds and noise around critically ill patients in high-tech environments in order to facilitate
wellbeing, sleep and recovery. Nurses have a vital role in developing such an environment.
Critical illness; health facility environment; patients’ experiences; phenomenological hermeneutic; sound.
This study explored beliefs about health and illness that might affect self-care and health-seeking behaviours in Zimbabwean men and women with diabetes. Gender differences were indicated in a previous study but their extent has not been studied. The present study used a qualitative descriptive design with semi-structured interviews to gain a deeper understanding of the phenomena. The sample consisted of 21 participants, 11 females aged 19-61 years (Median 44 years) and 10 males aged 22-65 years (Median 52 years). Qualitative content analysis was used. Health was described as freedom from diseases and enjoying well-being. Both males and females displayed limited knowledge about diabetes and dissimilarities in health-seeking behaviours. Women, in contrast to men, were more active in self-care and used various measures besides drugs as they related to a higher extent the cause of diabetes to supernatural factors like gods and witches. They sought information from self-help groups and help from outside the professional health sector like healers in the folk sector. Prolonged economic disruption also had negative effects towards maintenance of healthy life-styles as both men and women struggled to get money for food and drugs. Thus, the study highlighted that knowledge about diabetes and its management are important for self-care. There is therefore need to develop acceptable and affordable gender- sensitive diabetes care programmes that enhance patient participation, empowerment and promotion of health.
Diabetes mellitus; gender; health/illness beliefs; health-seeking behaviour; self-care; Zimbabwe.
The understanding of the association between the objective conditions of health and the subjective perceptions of morbidly obese patients appears to be poor. The use of objective indicators alone produces results totally unrelated to the feelings and experiences of the bariatric patients studied. No study has approached the bariatric patient from both an inside and a preoperative perspective.
The aim of this study was to investigate the meaning of awaiting bariatric surgery due to morbid obesity. Method: Twenty-three patients admitted to a Swedish University Hospital for bariatric surgery were included. Data were collected by interviews and the analysis was performed using the phenomenological hermeneutics method developed by Lindseth and Norberg.
Two structural thematic analyses revealed six main themes: experiencing food as a complex element in life, feeling hopeless regarding weight loss, living in fear of future sickness and death, living a restricted life, being ignored by health care professionals and hoping for control and opportunities. The informants experienced addiction to food and dependence on others for managing their daily life, which constituted an infringement of their freedom. Loss of control meant giving in to the desire for food, but also being subjected to stigmatizing remarks from persons in their environment or uncaring approaches from health care professionals.
Being scheduled for bariatric surgery meant developing an awareness of how completely dependent they were on surgery for their survival and prospective health. The scheduled bariatric surgery constituted tangible confirmation that weight loss and restored health were possible.
Morbid obesity; awaiting surgery; inside perspective; phenomenological hermeneutics method.
The discipline of nursing continues to evolve in keeping with the dramatic expansion of scientific knowledge, technology, and a concomitant increase in complexity of patient care in all practice settings. Changing patient demographics require complex planning for co-morbidities associated with chronic diseases and life-saving advances that have altered mortality in ways never before imagined. These changes in practice, coupled with findings from sophisticated nursing research and the continuous development of new nursing knowledge, call for realignments of the relationships among academic faculty in schools of nursing, advanced practice nurse administrators, and staff nurses at the forefront of practice. This article offers a model designed to bridge the gaps among academic settings, administrative offices and the euphemistic “bedsides” where staff nurses practice. Here we describe the nurse attending model in place at the New York University Langone Medical Center (NYULMC) and provide qualitative data that support progress in our work.
Collaboration; attending nurse; practice support.
The purpose of this study was to investigate whether a nurse-led telephone session with patients suffering from breast cancer approximately ten days after final radiotherapy treatment affected their quality of life two to four weeks after radiotherapy. The study was conducted at the Radiotherapy ward at Vejle Hospital, Denmark between January and May 2010. The study population consisted of 100 patients, who were randomized with a 1:1 ratio to have either ordinary supportive conversations (control group), or ordinary supportive conversations and a supplementary nurse-led telephone session (intervention group). The quality of life was assessed using the questionnaires EORTC QLQ-C30 and EORTC QLQ-BR23. For statistical comparison of quality of life and for adjustment for covariates, multiple linear regression analysis was conducted. The mean [95 % CI] quality of life was 72.0 [66.4-77.6] in the control group and 69.9 [64.3-75.2] in the intervention group. Adjustment for covariates did not change the estimates. No statistically significant differences were found in the groups in either of the analyses. The nurse-led telephone session had no positive effect on the quality of life of patients with breast cancer two to four weeks after their final radiotherapy.
Quality of life; breast neoplasm; questionnaire; RCT; supportive conversation; nursing; women.
The purpose of this study was to answer the following two questions: What are clinical nurses’ rationales for their approaches to finding patient educational materials on the web? What are perceived barriers and benefits associated with the use of web-based information resources for patient education in the context of nursing clinical practice?
Over 179 individual data units were analyzed to understand clinical nurses’ rationales for their approaches to find patient educational materials on the web. Rationales were defined as those underlying catalysts or activators leading to an information need. Analyses found that the primary reasons why clinical nurses conducted web-based information searches included direct patient requests ( 9 requests), colleague requests (6 requests), building patient materials collections (4), patients’ family requests (3), routine teaching (1), personal development (1), or staff development (1). From these data, four broad themes emerged: professional reasons, personal reasons, technology reasons, and organization reasons for selecting information resources. Content analysis identified 306 individual data units representing either ‘benefits’ (178 units) or ‘barriers’ (128) to the nurses’ use of web resources for on-unit patient care. Inter-rater reliability was assessed and found to be excellent (r = 0.943 to 0.961). The primary themes that emerged as barriers to the used of web-based resources included: 1) time requirements to perform a search, 2) nurses’ experience and knowledge about the resources or required technology, 3) specific characteristics of individuals electronic information resources, and 4) organizational procedures and policies. Three primary themes that represented the benefits of using web-based resources were also identified: 1) past experiences and knowledge of a specific resource or the required technologies, 2) availability and accessibility on the unit, and 3) specific characteristics of individual information tool. In many cases, nurses commented on specific characteristics or features of favorite information resources. Favorite sites included a variety or reputable health care organizations that displayed context in text, audio, and/or video. In addition such sites were described as easy-to read and provided content related to patient-focused information or specific content such as toll free telephone contact numbers.
Information searching is the interaction between and among information users and computer-based information systems. Information seeking is becoming an important part of the knowledge work of nurses. Information seeking and searching intersects with the field of human computer interaction (HCI), which focuses on all aspects of human, and computer interactions. Users of an information system are understood as “actors” in situations, with a set of skills and shared practices based on work experiences with others. Designing better tools and developing information searching strategies that support, extend, and transform practices, begins by asking: Who are the users? What are the tasks? What is the interplay between the technology and the organization of the task? This study contributes fundamental data and information about the rationales nurses use in information seeking tasks. In addition it provides empirical evidences regarding barriers and benefits of information seeking in the context of patient education needs in inpatient clinical settings.
Health information systems; nurses’ information seeking; searching web-based knowledge resources; patient education.
The aim of the study was to develop, implement and evaluate a concept for the first support program for young carers and their families in Germany. This paper intends to critically review the implementation of that study and describe the problems experienced by the research team, including: the complexity of the intervention itself, the difficulty of finding host organizations, the lack of infrastructure, different values and beliefs about the project aims held between the host organization and the research team, shortage of time, identifying and recruiting families among the hidden population of young carers. These initial problems led to the re-constructuring of the original research design. In order to evaluate factors that influenced these difficulties, the original research intentions, emerging problems and their consequences will be presented.
Young carers; complex intervention; implementation process.