Ella Danielson

Nurses' attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language. The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients. A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used. The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach α's. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients. Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses' attitudes toward caring for dying patients. Care culture might influence nurses' attitudes toward caring for dying patients; the benefits of education need to be explored.

The aims of the study were to investigate lung cancer patients' quality of life (QoL) over time in a palliative setting and to determine how QoL is influenced by symptoms, coping capacity, and social support. One hundred and five consecutive patients with incurable lung cancer were included. A comprehensive set of questionnaires was used at baseline, including the Assessment of Quality of Life at the End of Life, Cancer Dyspnea Scale, Visual Analog Scale of Dyspnea, Hospital Anxiety and Depression scale, Sense of Coherence Questionnaire, and Social Support Survey, of which the first four were used also at three, six, nine, and 12 months. Dyspnea, depression, and global QoL deteriorated over time. Performance status, anxiety, depression, components of dyspnea, pain, and the meaningfulness component of coping capacity correlated with global QoL at all, or all but one follow-up measurements. In a multivariate analysis with global QoL as the dependent variable, depression was a significant predictor at four out of five assessments, whereas coping capacity, anxiety, performance status, pain, and social support entered the model at one or two assessments. Emotional distress and coping capacity influence QoL and might be targets for intervention in palliative care.

Our aim was to describe the developmental process of a training program for nurses to communicate existential issues with severely ill patients. The Medical Research Council (MRC) framework for the development and evaluation of complex interventions was used to develop a training program for nurses to communicate about existential issues with their patients. The steps in the framework were employed to describe the development of the training intervention, and the development, feasibility and piloting, evaluation, and implementation phases. The development and feasibility phases are described in the Methods section. The evaluation and implementation phases are described in the Results section. In the evaluation phase, the effectiveness of the intervention was shown as nurses' confidence in communication increased after training. The understanding of the change process was considered to be that the nurses could describe their way of communicating in terms of prerequisites, process, and content. Some efforts have been made to implement the training intervention, but these require further elaboration. Existential and spiritual issues are very important to severely ill patients, and healthcare professionals need to be attentive to such questions. It is important that professionals be properly prepared when patients need this communication. An evidence-based training intervention could provide such preparation. Healthcare staff were able to identify situations where existential issues were apparent, and they reported that their confidence in communication about existential issues increased after attending a short-term training program that included reflection. In order to design a program that should be permanently implemented, more knowledge is needed of patients' perceptions of the quality of the healthcare staff's existential support.

The aim of this study was to investigate how the caring relationship is formed in a medical context. The data were collected using participant observation with field notes and analysed by an interpretive phenomenological method. The context circumstances in a medical milieu demanded exacting efficiency and risks to oppress the caring relationship, subsequently causing demands in nursing practice. Three themes of the caring relationship were identified as respect for each other and for themselves, responsibility to reach out to each other and engagement. Patients' and nurses' awareness in encounters drove the forming of a caring relationship that went beyond the individual nurse and patient. This study implicates the importance of an understanding of how context circumstances create the foundation of the caring relationship.

As the incidence of Type 1 diabetes mellitus has increased during childhood, more patients will experience the transfer from paediatric diabetes care to adult diabetes care. In order to achieve a coherent care system it is essential to identify conditions, events and actions that hinder and facilitate a successful transition between these settings. The aim of this study was to describe care culture in paediatric and adult diabetes outpatient clinics and implications for care of adolescents in those settings. Fifty-one participant observations and 10 semi-structured interviews with diabetes care providers were carried out in two paediatric clinics and two adult clinics in Sweden. Data were analysed simultaneously with data collection, using a constant comparative method developed in the grounded theory tradition. In the analysis process, one core category, four categories and subcategories were generated. The core category shifting aspects of diabetes care culture is related to the c...

The aim of this study was to describe the ways of living with major depression in families. Seven families with an adult member who suffered major depression participated, in all 18 participants. Data were collected from seven narrative group interviews, one with each family. A qualitative thematic content analysis was used and the text was coded according to its content and further interpreted into themes. Findings consist of five themes: 'Being forced to relinquish control of everyday life'; during depression the family members lost their energy and could not manage everyday life. 'Uncertainty and instability are affecting life'; everyday life in the families was unstable and emotions influenced the atmosphere. 'Living on the edge of the community': the families periodically lived in seclusion. 'Everyday life becomes hard'; everyday life was demanding for everyone in the family and the responsibility shifted between family members. 'Despite everything a way out can be found'; the families as a unit as well as individually had their own ways of coping and finding some kind of satisfaction within the bounds of possibility. The families' experiences were demanding. Children were aware of their parent's depression and were involved in managing everyday life and emotionally affected by the situation. This legitimates the need for nurses and other healthcare professionals to have a family's perspective on the whole situation and to include partners as well as children and take their experiences seriously when supporting and guiding a family. It is important to develop strategies which in particular include children in the planning, provision and receiving of care as well as unburden them with the responsibility. It is also important to support the family in their own coping strategies with a major depressive episode.

The deinstitutionalization of psychiatric care has led to a concentration of patients to fewer wards. This leads to difficulties in separating voluntarily and involuntarily admitted patients, and there is a risk that the interest in safeguarding patients' autonomy will decrease. The aim of this study was to elucidate the meaning care has to patients on a locked acute psychiatric ward. The study was performed on a ward for patients with affective and eating disorders who were admitted both voluntarily and involuntarily. Interviews were conducted and analysed using qualitative content analysis. The results show that to the patients, care had contradictory qualities some alleviated their suffering while others contributed to stress. The alleviation from suffering originated from the experiences of strengthened integrity and self-determination, from being supported, and having a place of refuge on the ward. In contrast to this, there were experiences of being dependent and trapped because of lack of influence and choice, and being controlled. In conclusion, this qualitative study shows that to the patients, care can mean being disciplined in a way that risks undermining the alleviation of suffering that care can provide. It is thus important to be observant when it comes to manifestations of control in care. The study also shows that the support of fellow patients has a value as a complement to the care given by staff members and next of kin, something that needs to be further investigated.

This study aimed to analyse the outcomes of an educational intervention for family members living with a person with bipolar disorder. A longitudinal study was conducted comprising a 10-session educational intervention designed for families with members in outpatient mental health care. Thirty-four family members agreed to participate. Data were collected on five occasions, at baseline and during a 2-year follow-up through self-assessment instruments: the Carers of Older People in Europe Index, the Jalowiec Coping Scale-40, the Sense of Coherence questionnaire and the Social Adaptation Self-evaluation Scale. The results showed that the condition had a considerable negative impact on the family members as carers, but the educational intervention increased their understanding, which facilitated the management of their lives. A significant improvement in stress management was seen over time and social functioning was retained. The study showed that families living with one member with bipolar disorder benefited from the educational intervention in terms of increasing understanding of the condition and reducing stress. Mental health care needs to develop educational interventions further and offer the families support to strengthen their ability to manage with the situation.

The aim was to elucidate the meaning of major depression in family life from the viewpoint of an ill parent. Background. Major depression according to Diagnostic and Statistical Manual of Mental Disorders is common and may appear repeatedly over several years, and affects family life. Depression in parents has a negative impact on family function and children's health; however, studies regarding the deeper understanding of major depression in family life are lacking. A qualitative explorative study using narrative interviews with eight parents who were identified with major depression. A phenomenological-hermeneutic method of interpretation was used for analysing interview texts and included naïve understanding, a structural analysis where text was divided into meaning units, which were condensed and abstracted, and finally a comprehensive understanding. Two themes were extracted: 'to be afflicted in an almost unmanageable situation' with sub-themes 'feeling hopelessly bad', 'being worthless', 'being unsatisfied' and the theme 'to reconcile oneself to the situation' with sub-themes 'being active', 'being satisfied' and 'maintaining parenthood'. Comprehensive understanding revealed the parents' simultaneous suffering and dignity in family life; suffering with serious lack of well-being and health, destroyed self-confidence and unhappiness, and dignity with strength, confidence and joy in children. The movement between suffering and dignity complicated family life. Dignity was threatened by the awareness that suffering in major depression was recurrent. Dignity had to be repeatedly restored for self and the family, and family dignity has to be restored before others outside the family circle. A deeper understanding of the meaning of major depression in family life is helpful and for healthcare professionals to prevent individual and family suffering by assisting and preserving dignity.

This paper is a report of a study exploring the meaning of interactions with and supports of self-management from parents and other significant others for young adults with type 1 diabetes. Adolescence and young adulthood is known to be a critical period for people living with diabetes in terms of diabetes control, which is why support from significant others is of utmost importance during the transition to adult life. A grounded theory approach was used. Interviews with 13 young adults with type 1 diabetes and 13 parents 2 years after transfer to adult diabetes care were conducted during 2006-2007. Internet communication between young people on a diabetes website was also included in the constant comparative analysis. Transition to adult life for young adults with diabetes was characterized by a relational and reflexive process leading to ongoing redefinition of relationships and identity. Parents were perceived as the most reliable supporters, compared to partners, siblings and other significant others. Chat friends can also become important through emotional, social and diabetes-related support in internet communication. The young adults showed growing awareness of their own capacities, shortcomings and emotional reactions, reflections which contribute to a redefinition of self. Further research is needed to explore how contemporary interactions contribute to development of the self. By focusing on supporting relationships, nurses are in a strategic position to develop knowledge and modify clinical programmes that promote diabetes management and care by taking supporting interactions into account from a contemporary point of view.

The aim of this study is to describe the meaning of living with bipolar disorder (BD) based on individuals' views of the illness and their future. Interviews were conducted with 18 participants who resided in Sweden and had been diagnosed with bipolar disorder. Qualitative content analysis was employed. The findings revealed that daily life of those with BD was characterized by insecurity and challenges of accepting, understanding, and managing the illness. Increased hope of being able to influence the condition and receiving support to achieve a stable structure in life facilitates the management of daily life. Further research is needed on the next of kins' experiences of living with persons with BD.

Recent changes in psychiatric hospital care involving a reduction in the number of beds and time spent in hospital motivated the study of conditions of inpatient care on such wards. An ethnographic study of a locked, acute psychiatric ward in a department of psychiatry was performed with the aim of describing the health-care environment in such a ward. The ward admitted patients on both a voluntarily and involuntarily basis. Data were collected by means of 3.5 months of participant observations. The results showed a health-care environment that was overshadowed by control. Staff were in control but they also lacked control; they attempted to master the situation in line with organizational demands and they sometimes failed. At the same time, the staff tried to share the responsibility of caring for patients and next of kin. Patients were controlled by staff; they were the underdogs and dependent on staff for their care and the freedom to leave the ward. Patients tried to make themselves heard and reacted to the control by developing counter-strategies. What this study adds to earlier research is patients' pressure on staff and sometimes quite an open struggle for more control, which may be an expression for an unacceptable imbalance in power between patients and staff.

The aim of this study was to describe the dyspnea experience and examine its relation to other symptoms, personal and health-related factors and its predictors in patients with lung cancer. The subjects were 105 patients diagnosed with lung cancer, approached when active anti-tumour treatment was closed. The patients completed a battery of questionnaires about several aspects of dyspnea experience, intensity of other symptoms and coping capacity. Medical data including performance status were obtained from medical records. Above 50% of the patients perceived dyspnea. Coping capacity, performance status and other symptoms correlated with different aspects of dyspnea experience. Dyspnea dimensions and activity-related dyspnea correlated with anxiety, depression, fatigue and cough as well as negatively to coping capacity. Performance status correlated with dyspnea intensity and activity-related dyspnea. Lower coping capacity predicted dyspnea; additional predictors were higher levels of anxiety and fatigue. Dyspnea in this group of patients was a complex experience, including physical and psychological aspects and should preferably be assessed in a comprehensive way. A nursing intervention to decrease dyspnea experience and anxiety could use knowledge from this study about the importance of coping capacity to better help patients with lung cancer to cope in their palliative phase of the disease.

To explore how glycaemic control in young adults is related to diabetes care utilization during the transition to adult diabetes care and if these variables differ between males and females. This is a retrospective, longitudinal design following patients' records from age 18-24 years. Adolescents (n = 104) connected to one paediatric outpatient clinic and referred to six different adult clinics were included. Data were collected regarding gender, age at diagnosis and transfer, yearly glycated haemoglobin (HbA(1c)) and body mass index, severe hypoglycaemia and diabetic ketoacidosis, retinopathy and diabetes care utilization. HbA(1c) decreased over time in females (P = 0.004) but not in males. Less than 10% had HbA(1c) in the recommended range during the study period. The decrease in severe hypoglycaemia and diabetic ketoacidosis was not significant. The prevalence of background retinopathy increased from 5 to 29% during the study period (P < 0.001). Mean transfer age was 19.8 years. The youths visited the paediatric clinic more often than the adult clinic (P < 0.001) and females visited adult care more often than males (P = 0.04). There was a steady decrease in the number of visits/year over time (P < 0. 001). Poor glycaemic control was associated with more visits for both males and females (P = 0.005) in adult care. As there was no gender difference in the relation between HbA(1c) and the number of visits in adult diabetes care, the higher frequency of visits in adult care for females cannot be solely explained by their glycaemic control. Gender differences regarding diabetes care utilization should be further explored.