Relatives' participation in everyday care in special care units for persons with dementia.

BACKGROUND: Research concerning relatives' participation in the everyday care related to persons living in special care units for persons with dementia is limited. RESEARCH QUESTIONS: To examine relatives' participation in their near one's everyday care, the level of burden experienced and important factors for participation, in this special context. DESIGN: The study had a cross-sectional design, and data collection was carried out by means of a study-specific questionnaire. PARTICIPANTS AND CONTEXT: A total of 233 relatives from 23 different special care units participated. ETHICAL CONSIDERATION: The study was approved by the Norwegian Social Science Data Services. RESULTS: A great majority of relatives reported that they visited weekly and were the resident's spokesperson, but seldom really participated in decisions concerning their everyday care. Participation was seldom reported as a burden. DISCUSSION: This study indicated that relatives were able to make a difference to their near one's everyday life and ensure quality of care based on their biographical expertise, intimate knowledge about and emotional bond with the resident. Since knowing the resident is a prerequisite for providing individualised care that is in line with the resident's preferences, information concerning these issues is of utmost importance. CONCLUSION: This study prompts reflection about what it is to be a spokesperson and whether everyday care is neglected in this role. Even though relatives were satisfied with the care provided, half of them perceived their participation as crucial for the resident's well-being. This indicated that relatives were able to offer important extras due to their biographical expertise, intimate knowledge about and emotional bond with the resident. Good routines securing that written information about the residents' life history and preferences is available and used should be implemented in practice.

Patient participation in special care units for persons with dementia: A losing principle?

The aim of this study was to explore the experience of nursing personnel with respect to patient participation in special care units for persons with dementia in nursing homes, with focus on everyday life. The study has an explorative grounded theory design. Eleven nursing personnel were interviewed twice. Patient participation is regarded as being grounded in the idea that being master of one's own life is essential to the dignity and self-esteem of all people. Patient participation was described at different levels as letting the resident make their own decisions, adjusting the choices, making decisions on behalf of the residents and forcing the residents. The educational level and commitment of the nursing personnel and how often they were on duty impacted the level that each person applied, as did the ability of the residents to make decisions, and organizational conditions, such as care culture, leadership and number of personnel.

How do relatives of persons with dementia experience their role in the patient participation process in special care units?

AIMS AND OBJECTIVE: To explore the role of relatives in the patient participation process for persons with dementia living in special care units in Norwegian nursing homes, with focus on everyday life. BACKGROUND: Studies exploring the experience of relatives of persons with dementia as to their role in the patient participation process are limited. DESIGN: The study had an explorative grounded theory design. METHOD: Data collection was carried out by interviews with twelve close relatives. Simultaneously, data analysis was performed with open, axial and selective coding. RESULTS: The relatives' role in the patient participation process was experienced as transitions between different roles to secure the resident's well-being, which was understood as the resident's comfort and dignity. This was the ultimate goal for their participation. The categories 'being a visitor', 'being a spokesperson', 'being a guardian' and 'being a link to the outside world' described the different roles. Different situations and conditions triggered different roles, and the relatives' trust in the personnel was a crucial factor. CONCLUSIONS: The study has highlighted the great importance of relatives' role in the patient participation process, to secure the well-being of residents living in special care units. Our findings stress the uttermost need for a high degree of competence, interest and commitment among the personnel together with a well functioning, collaborative and cooperative relationship between the personnel and the relatives of persons with dementia. The study raises several important questions that emphasise that more research is needed. RELEVANCE TO CLINICAL PRACTICE: Relatives need to be seen and treated as a resource in the patient participation process in dementia care. More attention should be paid to initiating better cooperation between the personnel and the relatives, as this may have a positive impact both on the residents' and the relatives' well-being.

Sexuality is not a priority when disease and treatment side effects are severe: conceptions of patients with malignant blood diseases.

AIMS AND OBJECTIVES: To describe how patients with malignant blood diseases conceive the influence of chemo- or chemoimmunotherapy on sexuality, and their need of support related to this issue. BACKGROUND: Sexuality is often negatively affected in cancer patients with sex-specific diagnoses. For patients with malignant blood diseases, the research is limited with regard to the effect on sexuality. Knowledge about their need for support related to sexuality is also needed as nurses are found to often avoid this area of their responsibility. DESIGN: Qualitative design. METHODS: Twelve patients treated for malignant blood diseases were interviewed twice. Phenomenography was used for the analysis. RESULTS: The analyses revealed an outcome space consisting of two main categories: 'Sexuality is overshadowed by the cancer experience' and 'No need of support but timely information might be helpful', both comprehensively related to three interrelated description categories 'Affected strength', 'Affected sexual desire' and 'Affected body image', which describe conceptions of how sexuality was affected. CONCLUSION: Patients experienced negative effects on sexual function and sexual relationship during and after treatment period due to affected strength, sexual desire and negatively body image. However, when disease and side effects were experienced as severe, thoughts and interest of sexuality were overshadowed, and the need or wish for support related to this issue was very low. It is important to note that some patients expressed that pre- or post-treatment information might have been helpful. RELEVANCE TO CLINICAL PRACTICE: It is acknowledged in the cancer care of today that cancer follow-up should address psychosocial support in which sexuality is an important area. Therefore, it is imperative that cancer care is organised in a patient centred way, with adequate time for nurses to provide continuity in the nurse-patient relation and supportive care also during cancer rehabilitation.

Expectations and experiences of group supervision: Swedish and Norwegian preceptors' perspectives.

AIM: The aim of the present study was to describe preceptors' expectations and experiences of participating in group supervision (GS). BACKGROUND: The challenging role of preceptors and their need for support is well known. Therefore, a collaborative project was carried out, providing GS to preceptors to strengthen them in their role. METHOD: Data were collected from 48 preceptors by means of study-specific forms and field notes, and analysed using qualitative content analysis. RESULTS: Both positive and negative expectations and experiences of group supervision were found, but the positive experiences exceeded the expectations. The group in itself had a significant meaning for the preceptors; their pedagogical and personal competence increased and they became aware of their role as 'bridge-builders'. CONCLUSIONS: Using GS to strengthen preceptors in their role was found to be successful. The findings provided new arguments for this model as a reflection tool. IMPLICATIONS FOR NURSING MANAGEMENT: Strengthened preceptors can have an impact on nursing students' learning, and thereby also on future nurses' competence, which is a great concern of nurse managers. By using nurse lecturers as group leaders, the collaboration between the clinical placements and the nursing faculties can be improved.

Struggling in an inescapable life situation: being a close relative of a person dependent on home enteral tube feeding.

AIM: To explore what it means to be a close relative of a person dependent on home enteral tube feeding (HETF) and how they can manage this situation. BACKGROUND: Previous studies have shown that the situation of close relatives in home care in general can be burdensome and difficult. Research is scarce about experiences of close relatives when patients are treated with HETF. DESIGN: A qualitative design was used, in accordance with grounded theory (GT). METHODS: Twelve close relatives were interviewed twice, using open-ended questions. Five were relatives of patients supported by home care services or advanced home care teams. Using the GT method, sampling, data collection and data analysis were carried out simultaneously. RESULTS: One core category, 'Struggling in an inescapable life situation' and eight categories were found. The situation led to involuntary changes in the lives of the close relatives, something they could do little about. Their lives had become completely upturned and restricted by the HETF. Togetherness and pleasure was lost and they felt lonely. The relatives faced a new role of being informal caregivers and they had to adjust their daily life accordingly. They felt forced to take on a heavy responsibility for which they lacked support. The close relatives struggled to manage and to make the best of their new situation. CONCLUSIONS: This study highlighted the demands and vulnerability which is embedded in the role of being a close relative of a patient with HETF. It also pointed out their need for comprehensive support from the health care system. RELEVANCE TO CLINICAL PRACTICE: Support to facilitate the situation of close relatives should be given from the health care. One way to organise the care could be through a nurse-led clinic, which provides continuous support, information and counseling.

A model for a national clinical final examination in the Swedish bachelor programme in nursing.

AIM: To describe the development and evaluation of a model for a national clinical final examination in the bachelor nursing education. BACKGROUND: After the transfer of nursing education to the academy, concerns have been raised among nurses, nurse leaders, lecturers and researchers about the nursing students' clinical competence at the entrance to professional life. METHODS: During 2003 to 2005, a collaborative project was carried out between four universities and adjunctive health-care areas supplying clinical placements in Sweden. A two-part examination was agreed upon comprising a written theoretical test and a bedside test. An assessment tool for the bedside test was created. Nursing students, nurses and clinical lecturers participated voluntarily in the evaluation. RESULTS: The model was highly appreciated, and its relevance, usability, and validity were considered quite good for the assessment of nursing students' clinical competence at the final stage of their education. Several deficiencies were revealed, which led to further development of the model. CONCLUSIONS AND IMPLICATIONS FOR NURSING MANAGEMENT: The development and first evaluation of the model proved encouraging for further use, but it needs further evaluation. Involvement of nursing managers is necessary in order to satisfy new demands on competence and staffing of clinical nurses.

Factors of importance to the development of pressure ulcers in the care trajectory: perceptions of hospital and community care nurses.

AIM: The study aimed at describing contributing factors for the progression or regression of pressure ulcers in the care trajectory as they were understood by nurses working in hospitals or community care. BACKGROUND: The development of pressure ulcers is considered to be connected with early prevention and awareness among nurses and some studies have indicated that the care trajectory may be a weak point. DESIGN: The study was carried out with a qualitative design. METHOD: Fifteen nurses from two Swedish hospitals and 15 nurses from community care were interviewed during 2005. Qualitative content analysis was used to make an understanding of patterns possible. FINDINGS: Three main categories arose, showing that pressure ulcers were considered to be affected in the care trajectory by factors related to the individual patient, to the healthcare personnel and to the healthcare structure. Hospital and community care nurses mostly had corresponding perceptions of these factors. CONCLUSION: The study both confirmed previous findings and added new knowledge about factors that may affect pressure ulcer in the trajectory of care. The informants' views of nurses' responsibilities and their attitudes towards the care of pressure ulcers could, along with their views on the organisation of care, increase the understanding of the occurrence of pressure ulcers. The need for development and clarification of the organisation and responsibility of pressure ulcer care in the care trajectory was stressed. Relevance to clinical practice. The study highlighted attitudes and values among registered nurses, as well as to how to preserve their commitment and increase their knowledge concerning prevention of pressure ulcers.

Group supervision for nursing students during their clinical placements: its content and meaning.

AIM: To explore what situations students focus on during group supervision sessions, and what this supervision meant to nursing students during their clinical placements. BACKGROUND: Knowledge about clinical supervision of nursing students in groups is scarce concerning what situations the students bring to the sessions. METHOD: Open-ended questionnaires were filled out by students after each session. Qualitative content analysis was performed. RESULTS: The content evolved as: being a nursing student, encountering demanding situations and becoming a nurse. The meaning of group supervision was captured in the categories: 'satisfaction of being together in the supervision group', 'new understanding and insights' and 'hesitation and discomfort'. A change of pattern was found over time showing a development among the students from a self-centred focus to a profession-centred focus. CONCLUSION: The value of group supervision as a tool to support nursing students' personal and professional development was emphasized. The students' great need for and lack of support in 'bed-side nursing' was obvious. IMPLICATIONS FOR NURSING MANAGEMENT: Our findings would be valuable for nurse managers when striving for a good learning environment in clinical placements, as well as for nursing teachers, in their supportive role to both students and preceptors.

Being a nurse in nursing home for patients on the edge of life.

Nurses in nursing homes care for patients with complex health problems that need to be followed up by medical treatment. Most patients benefit from the treatment, but for some the treatment seems only to lengthen their death process. Sometimes questions are raised as to whether life-sustaining treatment should be withheld/withdrawn. Decisions related to such questions are difficult to make as some patients are 'on the edge of life', which is understood as a transition between living and dying with an unpredictable outcome, whether the illness will lead to recovery or dying. The aim of this study was to acquire a deeper understanding of what it is to be a nurse in a nursing home for patients on the edge of life. The research design was qualitative, based on hermeneutic phenomenology. Fourteen nurses at two nursing homes were interviewed twice. The result shows that when facing a patient on the edge of life, the nurses were challenged as professionals and as human beings. Two main themes were identified, which included two sub-themes each. The first main theme: 'striving to do right and good for everyone' included the sub-themes 'feeling certain, but accompanied by uncertainty' and 'being caught between too much responsibility and too little formal power'. The second main theme: 'being a vulnerable helper--the prize and the price', contained the sub-themes 'needing emotional protection in professional commitment' and 'feeling undervalued in spite of professional pride'. The essence was: 'being a lonely and enduring struggler between opposite poles'. The findings revealed paradoxes in nurses' work which might threaten nurses' professional identity and put heavy demands on their professional performance. There is a need for formal involvement in end-of-life decisions from nurses, further education and support to nurses related to patients on the edge of life.

Norwegian and Swedish preceptors' views of their role before and after taking part in a group supervision program.

The research literature has shown the expectations towards preceptors and their need of support in their role. Group supervision has been used for many years to promote nurses in their professional role, but no study has been found on how group supervision can support them as preceptors. This study aimed to explore how group supervision could influence the preceptors' views of their role and how they valued this participation. Forty-eight preceptors, who took part in a 1 year group supervision program conducted by nurse lecturers, filled in open-ended questionnaires before the first and after the last session. The data were analyzed by means of qualitative content analysis. The findings showed changes in the participants' views of the preceptor role, indicating that this group supervision model had a positive influence on the preceptors' pedagogical and professional thinking and supported their attainment of good preceptorship. Further research is needed in using group supervision as a tool to support preceptors.

Nurses' development of professional self--from being a nursing student in a baccalaureate programme to an experienced nurse.

AIMS: To investigate how baccalaureate degree nurses conceive their professional self over time, by following them from being students until some years after graduation. BACKGROUND: Competence and professional development in nursing has been studied and discussed in many research studies. However, how baccalaureate degree nurses judge themselves and their own competencies as professionals over time remains a topic for further research. DESIGN: Quantitative and longitudinal. METHODS: Respondents were students entering the three-year academic nursing programme 1993-1995 at a Swedish university. The Nurse Self-Description Form was used at the beginning of the education programme (n = 163), just before graduation (n = 124) and 3-5 years after graduation (n = 82). Data were analysed using parametric and non-parametric procedures. RESULTS: Generally, the respondents rated their professional self highly and rather stably over time on items related to humanistic values, practical, affective and social skills. Six of the 19 items increased significantly during the transition from student to nurse. The rating of the components 'Knowledge mastery' and 'Desire to contribute through research' decreased over time after graduation. Gender, previous studies in health care and participation in development or research work as nurses, influenced the results in some parts. CONCLUSION: In the transition from novice students to experienced nurses, the participants saw themselves well equipped compared with others regarding traditional components of nursing competence. However, their self-judgement decreased in components related to the new demands of a professional nurse. The findings illuminate an urgent need to search for further understanding about reasons why nurses decrease in self-judgement concerning these components. RELEVANCE TO CLINICAL PRACTICE: As the judgement of professional self is of importance to good performance in nursing, this study shows the need for further collaboration between the nursing education and the health care sector, in which nurses practice and also supervise nursing students.

Cooperation in the care for patients with home enteral tube feeding throughout the care trajectory: nurses' perspectives.

AIM: The aim of this study was to explore how the planning, daily care and follow-up procedures work in the care trajectory for patients treated with home enteral tube feeding, from the perspective of hospital and community care nurses. BACKGROUND: Discharge planning for patients in need of home enteral tube feeding is a complex process. Several studies have described routines for discharge and care of patients with home enteral tube feeding in the care trajectory, but few studies have investigated how this really works. METHOD: A qualitative method with a phenomenographic approach was used. Interviews, with open-ended questions, with ten nurses from both hospitals and communities were performed. FINDINGS: One main category, 'cooperation', emerged, which describes an hierarchical relationship to three description categories: 'nurses' knowledge', 'nurses' view of responsibility' and 'nurses' professional awareness and commitment'. Each of these contained two sub-categories showing a positive and a negative pole. CONCLUSIONS: Cooperation in the care of patients with home enteral tube feeding throughout the care trajectory was influenced by the nurses' knowledge about enteral tube feeding, the discharge-planning process, and whether their responsibility was clearly distributed. Whether nurses had a patient- or task-oriented attitude was also important. Inefficient cooperation was considered having negative effects on the quality of care regarding home enteral tube feeding. RELEVANCE TO CLINICAL PRACTICE: This study has stressed the need for improving cooperation and communication between nurses at hospitals and in communities, as well as for increasing nurses' level of knowledge, to make home enteral tube feeding work in a safe way. It also has illuminated the urgent need to clarify responsibility distribution at the workplace, which is a question for nurse managers. Discussions should be undertaken among nurses about guidelines for tube feeding care and discharge process, as this is the responsibility of all professional nurses.

A supportive nursing care clinic: conceptions of patients with head and neck cancer.

Patients with head and neck cancer have complex long-lasting physical and psychosocial needs due to illness and treatment, and studies have shown deficiencies concerning support in these respects. The purpose of this study was to describe how head and neck cancer patients with eating problems conceived the significance of a supportive nursing care clinic before, during and after completion of radiotherapy. Thematic interviews were carried out in an open dialogue with 12 patients treated with radiotherapy for head and neck cancer. The phenomenologischer method was used in the analyses. The findings showed that the nurse clinic could meet head and neck cancer patients' needs of safety and security, which was especially important before and after completion of treatment when no other regular contacts in the health care system existed. The significance of the nurse clinic varied depending on where in the trajectory the patients were, what needs and problems they experienced, and how severe these were experienced by the individual patient. The supportive nursing care clinic could meet these patients' needs of knowledge, care and support both concerning practical measures related to the disease and its treatment, and emotional needs. This way of organising the care can contribute to these patients' health and wellbeing.

Good nursing care to ICU patients on the edge of life.

Critically ill patients are admitted to intensive care units (ICUs) to receive advanced technological and medical treatment. Some patients seem not to benefit from the treatment, and sometimes questions are raised as to whether treatment should be withheld or withdrawn. This study was conducted using ICU nurses' experiences with the aim of acquiring a deepened understanding of what good nursing care is for these patients. The study was performed at an adult ICU in Norway, where 14 ICU female nurses were included as participants. The research design was based on interpretative phenomenology and data was collected by group interviews inspired by focus-group methodology. The participants were divided into two groups and each group was interviewed four times. Colaizzi's model was used in the process of analysis. The results show that good nursing care depended on several basic conditions: continuity, knowledge, competence and cooperation, and included clear goals to give appropriate life-saving -- or end-of-life treatment and care. Cornerstones in good nursing care were nurses' verbal communication and nurses' use of their hands. The study emphasises several consequences for future ICU nursing practice and education to enhance good nursing care to patients on the edge of life.

Eating problems and weight loss for patients with head and neck cancer: a chart review from diagnosis until one year after treatment.

This descriptive study aimed to examine the occurrence and treatment of eating problems, and their causes and consequences during the trajectory of care for patients with head and neck cancer treated with radiotherapy. The method used was a review of patient records, conducted by means of an audit instrument developed for the study. The instrument audits demographic data and documented eating problems, their causes and consequences, and undertaken interventions in medical and nursing records from diagnosis until 1 year after completion of treatment. Data were collected prior to treatment, each week during radiotherapy and at the follow-up visits to the physician 1, 6, and 12 months after completion of treatment. The results show that eating problems were common before treatment started, and at the end of radiotherapy every patient suffered from eating problems. One year after treatment the majority still had eating problems. Weight loss occurred early during radiotherapy and became aggravated after treatment, but was not treated to an adequate extent. Implications of this study are that nutritional interventions must be initiated before the treatment starts and they need to be ongoing after completion of treatment.

A model (CMBP) for collaboration between university college and nursing practice to promote research utilization in students' clinical placements: a pilot study.

BACKGROUND: A collaborative project was initiated in Norway between a university college and a hospital in order to improve RNs' and nursing students' research utilization in clinical placements. This paper describes the model (CMBP) that was developed, its first application, and evaluation. AIM: The evaluation aimed at describing nurses' and students' experiences of the CMBP related to collaboration, facilitation, learning, and impact on nursing care. METHODS: Thirty-eight students from the second and third year of nursing education, and four nurses answered questionnaires with closed and open ended questions. In addition two of the nurses wrote diaries. Data were subjected to qualitative and quantitative analysis. FINDINGS: Almost all participants reported that collaboration between nursing college and nursing practice had been beneficial. Most students and all nurses reported about valuable learning, increased understanding of research utilization, and improved quality of nursing care. Both students and RNs recommended the CMBP to be used in all clinical placements to support academic learning and increase research utilization in clinical practice. CONCLUSION: Despite study limitations the findings indicate that the CMBP has a potential to be a useful model for teaching RNs' and students EBP. However, further refinement of the model is needed, followed by a more comprehensive implementation and evaluation.

Nursing care for patients on the edge of life in nursing homes: obstacles are overshadowing opportunities.

BACKGROUND: Patients in nursing homes have comprehensive needs for nursing care and medical treatment. Most patients benefit from the treatment, but some are 'on the edge of life'-in a borderland between living and dying with an unpredictable outcome, and questions are sometimes raised whether to withhold/withdraw curative treatment. AIM: The aim was to describe nurses' conceptions of good nursing care, and how this could be carried out for patients on the edge of life in nursing homes. DESIGN: In order to discover variations in the nurses' understandings a phenomenographic approach was chosen. Phenomenography is concerned with qualitatively different ways of conceiving a phenomenon. Methods. Fourteen nurses from two nursing homes were individually interviewed twice. A phenomenographic analysis was used. RESULTS: The outcome-space included two main categories. The first, 'good nursing care is to meet patients' needs for dignity,' included three description-categories: needs for 'preparedness', 'human relationship' and 'bodily comfort and safety'. The second, 'opportunities were overshadowed by obstacles' in carrying out nursing care encompassed three description-categories: 'organisational factors,''relational factors' and 'personal factors'. CONCLUSIONS: This study shows nurses' conceptions of the importance of good nursing care for comforting patients on the edge of life. IMPLICATIONS FOR PRACTICE: Several obstacles related to resources, communication, cooperation and nurses' professional strength and power need to be overcome if good nursing care can be performed.

Group supervision to strengthen nurses in their preceptor role in the bachelor nursing education--perceptions before and after participation.

BACKGROUND: A collaborative project was carried out at four bachelor nursing colleges in Sweden and Norway, to support preceptors in the clinical fields by means of group supervision. The aim of this study was to investigate the preceptors' views on their own ability and satisfaction in the role before and after taking part in group supervision during one year and to describe their perception of the supervision model used. METHOD: Forty-five preceptors participated in the study. Baseline and endpoint questionnaires were used for data collection. RESULTS: Before taking part in group supervision most preceptors expressed that they were content with their ability and knowledge with regards to the preceptor role. Despite this most of them considered that the participation had increased their ability to supervise students, and more than half of them considered that it also had promoted to their personal development. At the end of the project a majority of them had positive experiences of group supervision. Most of the structure and climate factors in the supervision model were considered important and almost all were highly realised. CONCLUSION: The study showed that group supervision could be a valuable tool to provide support to clinical preceptors in bachelor nursing education.

A clinical supervision model in bachelor nursing education - purpose, content and evaluation.

BACKGROUND: Collaboration between universities and clinical placements has been highlighted as a weak point of the nursing education. To facilitate a good academic learning environment a clinical supervision model had been developed. The aim of this study was to evaluate to what extent the goals of the model were met after one and a half years of utilisation. METHODS: A questionnaire was responded to by 30 head nurses, 12 main preceptors, 193 personal preceptors, and 11 clinical nurse lecturers. RESULTS: Most of the participants perceived that the quality criteria in the model were met to a large extent, the students' individual goals were achieved, and the supervision model contributed to fulfilment of goals, and assessment of the students. The nurse lecturers scored highest and the personal preceptors lowest in most of the questions. The conditions stated in the model were not always fulfilled. The deficiencies found were especially related to education level, time for supervision, and support to the personal preceptors. CONCLUSIONS: Despite some shortcomings the supervision model was considered by most participants as a valuable tool to be used in an academic nursing education. Improvements of the model in regard to the findings were suggested.