The aim was to explore the major concerns of specialist nurses pertaining to academic learning during their education and initial professional career. Specialist nursing education changed in tandem with the European educational reform in 2007. At the same time, greater demands were made on the healthcare services to provide evidence-based and safe patient-care. These changes have influenced specialist nursing programmes and consequently the profession. Grounded Theory guided the study. Data were collected by means of a questionnaire with open-ended questions distributed at the end of specialist nursing programmes in 2009 and 2010. Five universities were included. Further, individual, pair and group interviews were used to collect data from 12 specialist nurses, 5-14 months after graduation. A major concern for specialist nurses was that academic learning should be "meaningful" for their professional future. The specialist nurses' "meaningful academic learning process" was characterised by an ambivalence of partly believing in and partly being hesitant about the significance of academic learning and partly receiving but also lacking support. Specialist nurses were influenced by factors in two areas: curriculum and healthcare context. They felt that the outcome of contribution to professional confidence was critical in making academic learning meaningful.
Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.
This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.
The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.
The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.
The aim of this study was to obtain an understanding of what it means to be a hospice volunteer in a country without a tradition of hospice or palliative volunteer care services. Ten volunteers from three different hospices in Sweden were interviewed. Their narratives were interpreted with a phenomenological hermeneutic method. Three themes were disclosed: motives for becoming involved in hospices, encountering the hospice and encountering the patient. The interpretations disclose a need for the volunteer to be affirmed as a caring person and received in fellowship at the hospice. Positive encounters with a hospice are closely related to personal growth. Volunteers feel rejected if their need for meaning and for belonging to the hospice is not satisfied. This shows that hospices need to set goals in terms of volunteer support, particularly regarding existential issues following the encounter with the hospice and the patient.
BACKGROUND: Patient-reported outcomes incorporated in cancer clinical trials, are increasingly hypothesized to be predictors of disease-free survival. Previous research supports health-related quality of life (HRQoL) as an independent predictor of survival in patients with advanced or metastatic breast cancer. In contrast, recent studies provide evidence that baseline HRQoL scores are not associated with increased risk of relapse or survival in women with early-stage breast cancer. One plausible assumption might be that baseline HRQoL scores are limited as predictors of a recurrence of breast cancer several years after the initial diagnosis. In this explorative study, we examined whether changes in HRQoL over time may predict breast cancer recurrence. As a supplement, we investigated whether baseline HRQoL predicted recurrence. METHODS: The study sample consisted of 141 participants in the International Breast Cancer Study Group adjuvant Trial 12-93 and Trial 14-93, from the Western region of Sweden. HRQoL was assessed, during a 5-year follow up. Poisson regression analysis was used to estimate the hazard function of recurrence depending on time since primary diagnosis and on HRQoL variables. RESULTS: According to the Poisson multivariable regression analysis changes in physical well-being (beta=0.00439, p-value=0.0470), and nausea/vomiting (beta=-0.00612, p-value=0.0136) significantly predicted recurrence. Baseline HRQoL outcomes were not predictors of recurrence. CONCLUSIONS: Changes of HRQoL during adjuvant therapy may be associated with recurrence. This explorative finding needs prospective investigation.
Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness.
The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did.
A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score = 0 vs = 1).
A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression.
Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit.
Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.
Conscience is an important concept in ethics, having various meanings in different cultures. Because a growing number of healthcare professionals are of immigrant background, particularly within the care of older people, demanding multiple ethical positions, it is important to explore the meaning of conscience among care providers within different cultural contexts.
The study aimed to illuminate the meaning of conscience by enrolled nurses with an Iranian background working in residential care for Persian-speaking people with dementia.
A phenomenological hermeneutical method guided the study. Participants and research context: A total of 10 enrolled nurses with Iranian background, aged 33-46 years, participated in the study. All worked full time in residential care settings for Persian-speaking people with dementia in a large city, in Sweden. Ethical considerations: The study was approved by the Regional Ethical Review Board for ethical vetting of research involving humans. Participants were given verbal and written study information and assured that their participation was voluntary and confidential.
Three themes were constructed including perception of conscience, clear conscience grounded in relations and striving to keep a clear conscience. The conscience was perceived as an inner guide grounded in feelings, which is dynamic and subject to changes throughout life. Having a clear conscience meant being able to form a bond with others, to respect them and to get their confirmation that one does well. To have a clear conscience demanded listening to the voice of the conscience. The enrolled nurses strived to keep their conscience clear by being generous in helping others, accomplishing daily tasks well and behaving nicely in the hope of being treated the same way one day.
Cultural frameworks and the context of practice needed to be considered in interpreting the meaning of conscience and clear conscience.
Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden; Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Sweden; University of Gothenburg Centre for Person-Centred Care, Gothenburg, Sweden; firstname.lastname@example.org.
Only one empirical study, the one by Zingmark, Norberg and Sandman published in 1995, explicitly focuses on at-homeness, the feeling of being metaphorically at-home, as a particular aspect of wellness. However, other studies reveal aspects of at-homeness, but if or how such aspects of at-homeness are related to each other is unclear. For this reason, the aim was to review Scandinavian nursing research related to at-homeness in the context of wellness-illness in severe and long-term conditions in order to take a step towards conceptual clarification of "at-homeness." The review included interpretive studies related to severe and long-term illness conducted in Sweden: 10 original articles and 5 doctoral theses. "At-homeness" was found to be a contextually related meaning of wellness despite illness and disease embedded in the continuum of being metaphorically at-home and metaphorically homeless. This was characterized by three interrelated aspects and four processes: being safe through expanding-limiting experiences of illness and time, being connected through reunifying-detaching ways of relating, and being centred through recognition-non-recognition of oneself in the experience and others giving-withdrawing a place for oneself. This conceptualization is to be regarded as a step in conceptual clarification. Further empirical investigation and theoretical development of "at-homeness" are needed. The conceptualization will be a step of plausible significance for the evaluation of interventions aimed at enhancing wellness for people with severe long-term illness, such as the frail elderly, and people with chronic illness or palliative care needs.
The significance of connectedness for well-being is well known. At the end of life however, illness and body decline may challenge a person's ability of staying and feeling connected. The aim of this phenomenological study was to interpret meanings of connectedness, through narrative interviews with persons admitted to inpatient palliative care in Sweden. Results involving connectedness through the body, connectedness to, and uncanniness toward other patients, and connectedness to significant others and society are discussed. The study underscores the importance of connectedness until death. However, in inpatient palliative care this is complex. Patients can co-create or challenge each other's sense of connectedness through the symbolism of illness and diseased bodies. Moreover, the capability of connectedness is influenced by illness, spatiality, atmosphere, activities, and resources in the care place.
Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers.
Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care.
A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.
From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.
The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.
Place of death has for the past decade increasingly come to be regarded as a robust indicator of how palliative care is organized and provided, and is also recognized as an important factor for well being at the end of life. Variations in place of cancer deaths have previously been reported in the context of country-specific healthcare organization, but without differentiating between cancer types and national regional variations. Our aim was to examine, at a population level, where people with cancer diseases die in Sweden, and to investigate associations of place of death and cancer type with individual, socioeconomic and geographical characteristics of the deceased.
This population level study is based on death certificate data (sex; age; underlying cause of death and place of death) and population register data (educational attainment, marital status, living arrangements, area of residence, degree of urbanization, and healthcare region) of all 2012 cancer deaths in Sweden, with a registered place of death (hospital, nursing home, home, other places). Data were explored descriptively. To investigate associations between place of death and cancer types, and individual, socioeconomic and environmental characteristics, a series of multivariable logistic regression analyses were performed.
The most frequent type of cancer death occurring at home was upper gastrointestinal cancer (25.6%) and the least frequent was hematological cancer (15.2%). Regional variations in cancer deaths occurring at home ranged from 17.1% to 28.4%. Factors associated with place of death by cancer type were age, educational attainment, marital status, healthcare regions and degree of urbanization.
Large healthcare regional variations in place of death among different cancer types were found. The socioeconomic inequality previously demonstrated for screening, diagnostic and treatment processes, rehabilitation and survival thus also seems to be reflected in the place of death.