Parental handling of fear in children with cancer; caring in the best interests of the child.

The aim of this study was to gain a deeper understanding of how parents of children with cancer handle the fear in their children. Fifteen parents of 11 children participated in focus-group interviews. Data were analyzed by a phenomenological hermeneutical method. The results suggest that the parents' handling was equivalent with caring in the best interests of the child. This included striving for the security and well-being of the child up to a certain point where the parents instead used their authority to maintain the child's physical health rather than trying to prevent or relieve the child's fear.

Malnutrition in elder care: qualitative analysis of ethical perceptions of politicians and civil servants.

BACKGROUND: Few studies have paid attention to ethical responsibility related to malnutrition in elder care. The aim was to illuminate whether politicians and civil servants reason about malnutrition in elder care in relation to ethical responsibility, and further about possible causes and how to address them. METHOD: Eighteen elected politicians and appointed civil servants at the municipality and county council level from two counties in Sweden were interviewed. They worked at a planning, control and executive level, with responsibility for both the elder care budget and quality of care. Qualitative method was used for the data analysis. RESULTS: Two themes emerged from their reasoning about malnutrition related to ethical responsibility. The theme assumed role involves the subthemes quality of care and costs, competent staff and govern at a distance. Old and ill patients were mentioned as being at risk for malnutrition. Caregivers were expected to be knowledgeable and stated primary responsible for providing adequate nutritional care. Extended physician responsibility was requested owing to patients' illnesses. Little was reported on the local management's role or on their own follow-up routines. The theme moral perception includes the subthemes discomfort, trust and distrust. Feelings of discomfort concerned caregivers having to work in a hurried, task-oriented manner. Trust meant that they believed for the most part that caregivers had the competence to deal appropriately with nutritional care, but they felt distrust when nutritional problems reappeared on their agenda. No differences could be seen between the politicians and civil servants. CONCLUSION: New knowledge about malnutrition in elder care related to ethical responsibility was illuminated by persons holding top positions. Malnutrition was stressed as an important dimension of the elder care quality. Governing at a distance meant having trust in the staff, on the one hand, and discomfort and distrust when confronted with reports of malnutrition, on the other. Distrust was directed at caregivers, because despite the fact that education had been provided, problems reappeared. Discomfort was felt when confronted with examples of poor nutritional care and indicates that the participants experienced failure in their ethical responsibility because the quality of nutritional care was at risk.

Demanding behaviours and workload in elderly care in Sweden: occurrence at two time points within a decade.

The aim of this study was to investigate the occurrence of demanding behaviours in persons >or=65 years receiving home care or living in sheltered accommodation at two points in time, 1993 and 2002. Another aim was to investigate whether the perceived workload in staff had changed during this period. All persons >or=65 years living at home and utilizing home care services or those who lived in some form of sheltered housing were included and assessed by staff using a three-part questionnaire, in two cross-sectional studies. The study group comprised 1187 and 1017 participants which equals 77% and 99% respectively. Symptoms and degree of behavioural and psychiatric symptoms common in dementia that were assessed with a subscale in The Gottfries-Bråne-Steen Scale, demonstrated an all over increase from 1993 to 2002. Items from The Multi Dimensional Dementia Assessment Scale (MDDAS) measured a decrease in 'daily' occurrences of dementia symptoms but an increase in 'sometimes per week'. A mixed pattern was seen concerning behaviours where increases as well as decreases were found. The behaviours 'constantly seeking attention' and 'shrieking continuously' increased significantly. The number of individuals showing restless, aggressive or shrieking behaviours increased significantly over the decade. Two items from the MDDAS were used to measure the workload. The physical workload increased significantly over the decade whereas the rising tendencies of the psychological workload were not statistically significant. The mean age over the decade had increased from 83 to 86 years, which together with the findings make the recipients of home care and sheltered housing a very vulnerable group. The demanding problems place considerable pressure on staff.

Fear in children with cancer: observations at an outpatient visit.

The aim of the study was to describe interactions within the family and between them and professionals on a routine visit at a paediatric oncology outpatient clinic where the visiting child was likely to be fearful. Observations were performed. Data were analysed by qualitative content analysis. The behaviours most frequently observed as expressing fear were being quiet, withdrawn or providing detailed descriptions of experiences. Within the theme ;Recognition of the fear', an attentive attitude to the fear was traced; fear was confirmed and cooperation was seen. Although many efforts were made to meet the fear, this was not always successful. Within the theme ;Lack of attention to the fear', the fear was not in focus due to parental worries and concerns about the child's health, and organizational disturbances. The results can serve as a basis for collegial reflections of how to handle fear in children with cancer.

Unmet expectations: why nursing home staff leave care work.

Background. The shortages of healthcare professionals have been a common topic in care of older people. Aim and objectives. The aim of the present study was to illuminate what caused the nursing home caregivers to decide to leave their employment. Design. A two-year intervention study was performed in three nursing homes in Sweden. Method. This qualitative interview study was conducted with 18 caregivers who decided to leave their employment during the first year. Content analysis was the method used to analyse the interviews. Result. The caregivers' decisions to leave their work in care of older people could be encompassed in one main category: 'Unmet Expectations'. Their experiences were lack of encouragement and trust and professional development. Feelings of insecurity, different opinions on the care delivered, being disregarded and betrayed followed as did thoughts of leaving work and pursing other opportunities. Conclusion. The main findings indicated that organizational work pressure with information about pending financial cutbacks caused the caregivers to leave the nursing homes. Relevance to clinical practice. The study's results show the value of meeting the needs of caregivers, as caregivers consider that they meet the needs of the older people. Optimal use of caregivers' skills, experiences, competence and respect for their aspirations is also likely to result in cost-efficient care.

Despite shattered expectations a willingness to care for elders remains with education and clinical supervision.

The aim was to describe nursing home (NH) caregivers' work experiences while receiving education and clinical supervision for 2 years. Working in elder care seems to be losing its attraction especially with organizational changes, cutbacks and changes in work place conditions. Clinical supervision has been reported to increase job satisfaction and creativity. Semi-structured interviews from caregivers working at an NH in Sweden were conducted, at the start and again at 12 and 24 months. At about 12 months the caregivers were informed of planned cutbacks. Content analysis was the method used to analyse the interviews from seven caregivers who participated throughout the entire period. Findings show that the value of a caring milieu was one category generated by the subcategories: experiences related to work activities and changes, and experiences related to relationships. The value of knowledge was the other category that was influenced by the experiences related to the different backgrounds and the experiences related to increased knowledge gained from the support through education and clinical supervision. The categories contained positive as well as negative influences on care. The initial focus on practical duties associated with the opening of the NH shifted towards caregiver activities with the elders they spoke warmly about. After 2 years the caregivers' willingness to care continued despite their disappointment in the worsened working conditions. The main theme that resulted was: Despite shattered expectations a willingness to care for elders remained. Continued education and clinical supervision seems to be one factor behind the retained willingness. These findings demonstrate that support and caregiver involvement in educational programmes are important during times of change and when disappointments arise in the workplace.

Relatives' struggle for an improved and more just care for older people in community care.

AIMS AND OBJECTIVES: The aim of the present study was to describe the relatives' experience concerning older family members living in special housing facilities. BACKGROUND: During the 21st century, the relatives of older people and their efforts related to the care and nursing of older people have been observed. The interest in these relatives is because of factors such as demographic changes, where the number of older people has increased and the increasing gap between the resources that are available for geriatric care and the care needed for older people. DESIGN: The present study has a descriptive design and is part of a project including 24 specific residences, called special housing facilities. METHOD: The study focused on the narratives supplied by the relatives that were analysed using qualitative latent content analysis, an interpretative process where the researcher considers the content of the text. RESULTS: The relatives' experience of having an older person in a special housing facility that emerged from the study, was expressed in one main theme: The relatives' struggle for an improved and just care for older people and four sub-themes: (i)'To trust in caregivers'; (ii) 'To be confirmed'; (iii) 'To trust in care'; (iv) 'To receive the kind of care that one considers one has the right to receive'. CONCLUSIONS: The study shows that the relatives need more support and more opportunities, so that they can participate in the care. The study shows the relatives engagement in working for a just society's obligation towards the protection of older peoples rights and the staff's working conditions. RELEVANCE TO CLINICAL PRACTICE: It is important that caregivers and management working with older people realize that they, together with them and their relatives, are a part of society and that all individuals are influenced by the discourse of that society.

Children's fear as experienced by the parents of children with cancer.

It is known that children with cancer experience and express fear, but little is found in the literature about how the parents experience their child's fear. This study aimed to highlight the parents' lived experience and understanding of their child's fear. Focus group interviews with 15 parents were performed. Data were analyzed through a phenomenological hermeneutic method. Fear in children with cancer is described by the parents as a multidimensional phenomenon, which is somehow difficult to identify. It appears in contrast to the absence of fear. The comprehensive understanding of the results reveals that the parents experience their children's fear as both a suffering and an ethical demand for the parents to answer.

Ethical challenges related to elder care. High level decision-makers' experiences.

BACKGROUND: Few empirical studies have been found that explore ethical challenges among persons in high public positions that are responsible for elder care. The aim of this paper was to illuminate the meaning of being in ethically difficult situations related to elder care as experienced by high level decision-makers. METHODS: A phenomenological-hermeneutic method was used to analyse the eighteen interviews conducted with political and civil servant high level decision-makers at the municipality and county council level from two counties in Sweden. The participants worked at a planning and control as well as executive level and had both budget and quality of elder care responsibilities. RESULTS: Both ethical dilemmas and the meaning of being in ethically difficult situations related to elder care were revealed. No differences were seen between the politicians and the civil servants. The ethical dilemmas mostly concerned dealings with extensive care needs and working with a limited budget. The dilemmas were associated with a lack of good care and a lack of agreement concerning care such as vulnerable patients in inappropriate care settings, weaknesses in medical support, dissimilar focuses between the caring systems, justness in the distribution of care and deficient information. Being in ethically difficult situations was challenging. Associated with them were experiences of being exposed, having to be strategic and living with feelings such as aloneness and loneliness, uncertainty, lack of confirmation, the risk of being threatened or becoming a scapegoat and difficult decision avoidance. CONCLUSION: Our paper provides further insight into the ethical dilemmas and ethical challenges met by high level decision-makers', which is important since the overall responsibility for elder care that is also ethically defensible rests with them. They have power and their decisions affect many stakeholders in elder care. Our results can be used to stimulate discussions between high level decision-makers and health care professionals concerning ways of dealing with ethical issues and the necessity of structures that facilitate dealing with them. Even if the high level decision-makers have learned to live with the ethical challenges that confronted them, it was obvious that they were not free from feelings of uncertainty, frustration and loneliness. Vulnerability was revealed regarding themselves and others. Their feelings of failure indicated that they felt something was at stake for the older adults in elder care and for themselves as well, in that there was the risk that important needs would go unmet.

How physicians and nurses handle fear in children with cancer.

Previous research on fear in children with cancer has often focused on interventions to alleviate fear related to medical procedures and less on how to meet the challenges related to existential fear. This study aimed to describe how experienced nurses and physicians handle fear in children with cancer. Ten nurses and physicians with more than 10 years of experience in child oncology from a university hospital in Sweden were interviewed, and a qualitative content analysis was performed on the data. Nurses' and physicians' handling of fear encompasses commitment and closeness and yet also a distancing from fear and its expressions.

Tactile stimulation associated with nursing care to individuals with dementia showing aggressive or restless tendencies: an intervention study in dementia care.

Aim. This study aimed to describe from documentation both the caregivers' experiences of giving tactile stimulation to five people with moderate-to-severe dementia and who showed aggressive or restless tendencies, and the changes seen in them. Background. Clinical experiences indicate that tactile stimulation can contribute to a feeling of trust and confirmation as well as to improving communication, promoting relaxation and easing pain. There is, however, very little scientific documentation of the effects of touch massage for people with dementia. Design. From caregivers' documentation (28 weeks) of experiences, the giving of tactile stimulation to five randomly selected people with dementia showing aggressive or restless tendencies and the subsequent changes noticed. Method. The documentation was analysed by using qualitative content analysis. Results. All residents displayed signs of positive feelings and relaxation. The caregivers stated that they felt able to interact with the residents in a more positive way and that they felt they had a warmer relationship with them. Conclusion. Tactile stimulation can be seen as a valuable way to communicating non-verbally, of giving feedback, confirmation, consolation or a feeling of being valuable and taken care of. Relevance to clinical practice. Tactile stimulation has to be administered with respect and care, and given from a relational ethics perspective. Otherwise, there is a risk that tactile stimulation will be used merely as a technique instead of as a part of an effort to achieve optimal good, warm nursing care.

Satisfied patients are also vulnerable patients--narratives from an acute care ward.

AIM: To illuminate the experience of being a patient and cared for in an acute care ward. BACKGROUND: Patients may be the best source of information for assessing the quality of care in acute care wards. Studies often show that patients' satisfaction with their hospital stay is interpreted by managers and care providers as a measure for quality of care. DESIGN: Ten patients were interviewed as part of a comprehensive investigation by four researchers into the narratives of five enrolled nurses (study No. 1--published in Nursing Ethics 2004), five Registered Nurses (study No. 2 published in Nursing Ethics 2005) and 10 patients (study No. 3) about their experiences from an acute care ward at one university hospital in Sweden. METHOD: A phenomenological hermeneutical method (inspired by the French philosopher Paul Ricoeur) was conducted in all three studies. FINDINGS: The patients are very satisfied with their treatment and care. They also tell about factors that they do not consider as optimal, but which they explain as compromises, which must be accepted as a necessary part of their stay in the ward. This study demonstrates a close connection between patient satisfaction and vulnerability. CONCLUSIONS: It is important for all health care providers not to be complacent and satisfied when patients express their satisfaction with their treatment and care. This can result in losing the focus on the patients' vulnerability and existential thoughts and reflections which are difficult for them, and which need to be addressed. RELEVANCE TO CLINICAL PRACTICE: The findings can be seen as a challenge for the health care providers as well as the organization to provide quality of care to patients in acute care ward. When listening to the patients' voice it makes it easier to be aware of the content of their vulnerability.

Experiences of adding nurses to increase medical competence at an emergency medical dispatch centre.

INTRODUCTION: Prehospital care begins when the call is placed to the emergency medical dispatch (EMD) centre and ends when the patient is cared for at the emergency department. The highly technical and specialized character demands advanced medical competence. Communication problems, serious and unpredictable situations can often occur during the emergency calls. A two-year intervention study involved the addition of registered nurses to an EMD-centre team to increase medical competence. AIM: To describe registered nurses' and emergency-operators' experiences of working together at an EMD-centre after adding registered nurses to increase medical competence. METHODS: Qualitative content analysis was used to analyse the text from interviews with four registered nurses and 15 emergency-operators involved in the intervention. RESULTS: Initial frustration and scepticism changed to more positive experiences that resulted in improved cooperation and service. The registered nurses had difficulties dealing with the more urgently acute calls, while the emergency-operators had difficulties with the more complicated, somewhat diffuse cases. The two professions complemented each other. CONCLUSION: Combining the registered nurses' and emergency-operators' knowledge and experience at an EMD-centre can perhaps improve the prehospital care for those requiring emergency medical care.

Ways of relating during childbirth: an ethical responsibility and challenge for midwives.

The way in which midwives relate to expectant parents during the process of childbirth greatly influences the parents' childbirth experiences for a long time. We believe that examining and describing ways of relating in naturally occurring interactions during childbirth should be considered as an ethical responsibility. This has been highlighted in relation to parents' experiences and in the light of the relational ethics of Løgstrup. Four couples' and nine midwives' ways of relating were documented by 27 hours of observation, including 14.5 hours of video-recorded sessions. A qualitative content analysis was conducted. The midwives strongly influenced the different ways of relating and three aspects of professional competence were disclosed. The results can contribute to reflections about current praxis as an ethical demand for midwives.

Patients with acute chest pain - experiences of emergency calls and pre-hospital care.

Acute chest pain is a common reason why people call an emergency medical dispatch (EMD) centre. We examined how patients with acute chest pain experience the emergency call and their pre-hospital care. A qualitative design was used with a phenomenological-hermeneutic approach. Thirteen patients were interviewed, three women and 10 men. The patients were grateful that their lives had been saved and in general were satisfied with their pre-hospital contact. Sometimes they felt that it took too long for the emergency operators to answer and to understand the urgency. They were in a life-threatening situation and their feeling of vulnerability and dependency was great. Time seemed to stand still while they were waiting for help during their traumatic experience. The situation was fraught with pain, fear and an experience of loneliness. A sense of individualized care is important to strengthen trust and confidence between the patient and the pre-hospital personnel. Patients were aware of what number to call to reach the EMD centre, but were uncertain about when to call. More lives can be saved if people do not hesitate to call for help.

Meeting ethical challenges in acute nursing care as narrated by registered nurses.

Five registered nurses were interviewed as part of a comprehensive investigation by five researchers into the narratives of five enrolled nurses (study 1, published in Nursing Ethics 2004), five registered nurses (study 2) and 10 patients (study 3) describing their experiences in an acute care ward at one university hospital in Sweden. The project was developed at the Centre for Nursing Science at Orebro University Hospital. The ward in question was opened in 1997 and provides care for a period of up to three days, during which time a decision has to be made regarding further care elsewhere or a return home. The registered nurses were interviewed concerning their experience of being in ethically difficult care situations in their work. Interpretation of the theme 'ethical problems' was left to the interviewees to reflect upon. A phenomenological hermeneutic method (inspired by the French philosopher Paul Ricoeur) was used in all three studies. The most prominent feature revealed was the enormous responsibility present. When discussing their responsibility, their working environment and their own reactions such as stress and conscience, the registered nurses focused on the patients and the possible negative consequences for them, and showed what was at stake for the patients themselves. The nurses demonstrated both directly and indirectly what they consider to be good nursing practices. They therefore demand very high standards of themselves in their interactions with their patients. They create demands on themselves that they believe to be identical to those expected by patients.

Work satisfaction and dissatisfaction--caregivers' experiences after a two-year intervention in a newly opened nursing home.

AIMS AND OBJECTIVES: The aim of the study was to investigate, from the narratives of nine enrolled nurses and one nurses' aide directly involved in patient care, the deeper meaning of work satisfaction and dissatisfaction when working with the older people. BACKGROUND: Both nationally and internationally, there is little research documented regarding the working situation of the enrolled nurses and nurses' aides who make up the majority of care for older people today. With this in mind, it is important to focus on how these occupational groups experience their work with the older residents in municipal care, following a two-year intervention. DESIGN: The study is part of a larger longitudinal study, with a quasi-experimental design within the municipal system of care for older people in Sweden. The investigation was carried out following a two-year intervention, which included: education, support and clinical supervision. METHOD: The interviews were performed 12 and 24 months after start of the intervention and were analysed with a phenomenological-hermeneutic method inspired by Ricoeur's philosophy. RESULTS: The findings from these narratives illustrated a change compared with the findings from the first interviews, when the nursing home had just opened. There was a shift from a dominance of dissatisfaction with work, to a dominance of work satisfaction and this was expressed in the following themes: experience of a changed perspective, experience of open doors, and experience of closed doors. Each theme emerged from several different subthemes and each subtheme that had been expressed in the caregivers' narratives was interpreted. CONCLUSIONS: The study shows that the caregivers' experience of work satisfaction in the workplace exceeded their experience of dissatisfaction and that the intervention, consisting of: education, support, and supervision might have facilitated this positive development where the older residents were prioritized. It also shows that communication and understanding between management and staff had increased as the nursing home had opened. RELEVANCE TO CLINICAL PRACTICE: The findings can be used to help to prevent work dissatisfaction, and thereby increase work satisfaction for caregivers working in nursing homes.

Operators' experiences of emergency calls.

In Sweden, the operators at emergency dispatch centres are responsible for allocating resources (e.g. ambulances, fire brigade, police) in response to calls. We analysed situations that the emergency operators experienced as difficult and their reflections on how they managed them. Interviews were conducted with all 16 emergency operators at a centre that serves a population of 275,000 and receives about 700,000 emergency calls annually. A phenomenological-hermeneutic approach was used for the analysis. Situations that operators experienced as difficult were characterized by uncertainty, communication difficulties and insufficient resources. Skills, knowledge and experience were regarded as important in the management of these situations, as were personal qualities such as sensitivity, insight, empathy and intuition. The emergency operators stated that they needed more guidance, feedback and education in their work. This would lead to an increased sense of certainty, which would lead to decreased stress and a better outcome for those in need.

To feel betrayed and to feel that you are betraying the older residents: caregivers' experiences at a newly opened nursing home.

BACKGROUND: In Sweden and internationally, little research has focused on the working situation of Enrolled Nurses and Nurses' Aides who form the majority of workers in geriatric care today. With this in mind, it is important to focus on how these occupational groups experience their working situation with older residents in municipal care. AIMS AND OBJECTIVES: The aim of the study was to investigate the deeper meaning of work satisfaction and work dissatisfaction at a newly opened nursing home for older residents. The study focused on the narratives supplied by the caregivers at the nursing home. The participants included: one Registered Nurse, sixteen Enrolled Nurses, and three Nurses' Aides. All were directly involved in patient care. DESIGN: The present study is part of a larger longitudinal study within the municipal geriatric care system in Sweden, with a quasi-experimental design. METHOD: The interviews were analysed with a phenomenological-hermeneutic method inspired by the philosophy of Ricoeur. RESULT: The caregivers experiences of work satisfaction and work dissatisfaction was expressed in four themes: (i) 'Experience of betrayal' describes how the staff felt let down in several ways; (ii) 'Experience of failing others' describes how the staff felt that they did not pay enough attention to older people, in several different ways; (iii) 'Experience of insufficiency' describes how the staff encountered overwhelming demands from several directions; (iv) 'Experience of work satisfaction' describes how the staff felt that they were given support in various ways. Each theme emerged from several subthemes that originated from the caregivers' narratives. CONCLUSIONS: The study shows that the caregivers' experience of work dissatisfaction overshadows their experience of work satisfaction. It also suggests that their feelings of failing the older residents are connected to their own experiences of feeling betrayed. RELEVANCE TO CLINICAL PRACTICE: The findings can be used when other nursing homes in municipal care are opened, as a means of preventing work dissatisfaction and increasing work satisfaction among future employees.

Older people living in nursing homes or other community care facilities: Registered Nurses' views of their working situation and co-operation with family members.

BACKGROUND: Little attention has been paid to Registered Nurses' working conditions and how they experience their working situation in community health care. The nurses' vocational background is of interest, as well as their apprehension about communicating and co-operating with the older persons' family members. AIMS AND OBJECTIVES: The aim of the study was to describe Registered Nurses' views of their working situation in community health care and of co-operation with family members of older people living in nursing homes or similar facilities. DESIGN: The study was carried out in a geographically defined area in the south of Sweden. A questionnaire was sent to all the Registered Nurses (n = 314) working within community health care of whom 210 Registered Nurses replied to the questionnaires. METHODS: Latent content analysis was used on the comments to six questions, in order to illuminate the statistical findings from the statements of the questions measured by the Likert scale. RESULTS: The results showed that almost half of the Registered Nurses working in care of older people are not satisfied with their working situation. The nurses with less than 5 years working experience find their working situation most stimulating. All of them expressed that it is important that there is co-operation between themselves and the family members and it was also considered important to develop models that could improve co-operation. Male nurses believed, to a lesser extent, that family members were a resource in caring, compared with female nurses; however, all male nurses stressed the importance of facilitating informal caregivers. Nurses with more than 5 years of working experience expressed that it was important that family members show engagement in caring for older people. Furthermore, they expressed that it was necessary that the family members took care of the older persons' interests. RELEVANCE TO CLINICAL PRACTICE: The findings that half of the Registered Nurses are dissatisfied with their working situation have relevance in clinical practice because of the risk of losing competent nurses in this area.