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  • 51.
    Melin Johansson, Titti
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Axelsson, Bertil
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Caregivers' perceptions about terminally ill family members' quality of life2007Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 16, nr 4, s. 338-345Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Caregivers' perceptions on terminally ill family members' quality of life is rarely described. The aim of this study was to describe caregivers' perceptions about terminally ill family members' quality of life when suffering from cancer. Four caregivers participated in repeated focus group, and the data were analysed using qualitative content analysis. The findings were presented through five themes: 'living a normal life', 'being relieved from burdens', 'having a sense of belonging', 'being a symbol of incurable illness' and 'having a sense of dignity'. We found that to manage daily life it was significant to keep up a normal life and participate in social life. One new insight in this study was that caregivers contributed to an extending understanding to the term meaning in which the sense of belonging was fundamental. An obstacle for the sense of belonging was illuminated as the visible signs of incurable illness that stigmatized the ill person, and influenced the dignity. This study highlights the importance of supportive actions from significant others and healthcare professionals for terminally ill family members' quality of life.

  • 52.
    Melin Johansson, Titti
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Axelsson, Bertil
    Östersunds sjukhus. Kirurgkliniken.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Living with incurable cancer at the end of life - patients perceptions on quality of life2006Ingår i: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 29, nr 5, s. 391-399Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This study describes incurably ill cancer patients' perceptions of the quality of life at the end of life. Purposeful sampling was used to get as comprehensive descriptions as possible about quality of life. Five patients participated in repeated focus groups. Content analysis showed that the patients emphasized what they could perform and enjoy in daily life, not their shortcomings. Five themes were developed: "valuing ordinariness in life," "maintaining a positive life," "alleviated suffering," "significant relations," and "managing life when ill." The themes describe that the patients could participate in daily and social life despite cancer. Relation with family and palliative team deepened during the progress of illness in such that a resonance developed in communication. Other important findings were that patients' memories helped them to maintain a positive life and that the patients used individual strategies to relieve pain by emotional and physical distractions. For the patients, managing life as ill meant taking actions with creative thinking in solving problems as a way to cope and achieve quality of life. These positive findings from the focus groups have led to continued research regarding how patients with incurable cancer perceive quality of life.

  • 53.
    Melin-Johansson, Christina
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Axelson, Bertil
    Gaston-Johansson, F
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Significant improvement in quality of life of patients with incurable cancer after designation to a palliative homecare team2010Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 19, nr 2, s. 243-250Artikel i tidskrift (Övrigt vetenskapligt)
    Abstract [en]

    The aims of this study were to describe and compare quality of life (QOL) before and after designation to a palliative homecare team (PHT) in patients with different cancer diagnoses and to identify pre-designation predictors of post-designation global QOL. We measured patients� QOL one week before designation and 11 days (median time) after with the Assessment of Quality of life at the End of Life (AQEL). Of 163 eligible patient 63 participated without attrition. Patients� QOL improved in the physical, psychological, medical and global areas. Six items significantly improved: hours recumbent during the day (p=.009), nausea (p=.008), anxiety (p=.007), getting hold of staff (p=.000), received care (p=.003) and global QOL (p=.023). Depression/low in mood (r=.55) and meaningfulness (r=.70) associated to global QOL. Furthermore, pain (p=.028) and meaningfulness (p=.028) predicted global QOL. In the existential area, it is important to further explore how meaningfulness is associated to and predicts global QOL.

  • 54.
    Paulson, Margareta
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Larsson, Kenneth
    Östersund. Reumatikersjukhuset.
    Norberg, Astrid
    Umeå universitet. Institutionen för omvårdnad.
    Men's descriptions of their experience of nonmalignant pain of fibromyalgia type2001Ingår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 15, nr 1, s. 54-59Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The purpose of this study was to gather men's descriptions of their experience of nonmalignant pain of fibromyalgia (FM) type in order to to gain a deeper understanding of this phenomenon. Fourteen men participated in the study. A qualitative method with narrative interviews and content analysis were used. The findings showed that the men's experience of pain fell within two major themes: "perceptions of diversified bodily pain" and "perceptions of fluctuating pain". The pain had progressed from being local to being widespread. Characteristic was that the men described both pain that worried them and pain that did not worry them and also that the pain passed through both calm and difficult phases. This study highlights the importance of acknowledgement that men had specific experiences and used metaphorical expressions to make the pain visible. The clinical indication in this study is that health care staff need to listen intently to each man's experience of long-term pain that involve a great variety of both bodily and emotional symptoms. These findings are a crucial prerequisite for the health care staff's possibility to offer support and relief to men with pain of FM type.

  • 55.
    Paulson, Margareta
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Norberg, Ella
    Umeå universitet. Institutionen för omvårdnad.
    Nurses' and physicians' narratives about long-term non-malignant pain among men1999Ingår i: Journal of Advanced Nursing, ISSN 0309-2402, Vol. 30, nr 5, s. 1097-1105Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The aim of this study was to illuminate the meaning of skilled nurses' and physicians' lived experiences in their encounters with men suffering from long-term, non-malignant pain of at least 6 month duration. Seventeen nurses and four physicians participated in the study. A phenomenological-hermeneutic method was used. In the narratives three themes, "needing to be manly", "struggling for relief from pain" and "needing human support" emerged. The phenomenon "confirmation" of the theme "struggling to be manly" means that nurses' and physicians' must have such a relationship with theese men that they really feel respected. Confirmation of the theme "struggling for relief from pain! means thar the care givers must convince these men that they really believe each unique individual's narratives. Confirmation of the theme "needing human support" means that nurses and physicians have to behave in such a way that these men are convinced that the caregivers really care about them. When the men felt confirmation they dared to disclose their pain experiences more honestly. This is a preliminary prerequisite for nurses' and physicians' potential to help these men.

  • 56.
    Paulson, Margareta
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Söderberg, Siv
    Luleå universitet.
    Struggling for a Tolerable Existence: The meaning of Men's Lived Experiences of Living With Pain of Fibromyalgia Type2002Ingår i: Qualitative Health Research, ISSN 1049-7323, Vol. 12, nr 2, s. 238-249Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Chronic pain is a major health problem in Sweden because of its consequences in daily life. Fourteen men with fibromyalgia-type pain were interviewed regarding their experiences. A phenomenological hermeneutic method was used to interpret the transcribed interviews. Three major themes emerged: experiencing the body as an obstruction, being a different man, and striving to endure. Overall, the meaning of men's lived experience of chronic pain was experienced as change in the body, self, and relationships. Striving to live life required achieving balance during both calm and difficult phases of the illness--struggling for a tolerable existence. Information from this study could provide guidelines for health care staff members to give empathic and supportive care to men living with a long-term illness.

  • 57.
    Paulson, Margareta
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Norberg, Astrid
    Institutionen för omvårdnad, Umeå universitet.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Men living with fibromyalgia-type pain: Experiences as patients in the Swedish health care system2002Ingår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 40, nr 1, s. 87-95Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Individuals with fibromyalgia (FM) frequently use health care services and experience only short-term improvements. They often feel that health care staff do not take them seriously. This increases the burden of living with the illness. AIM: To describe how men living with fibromyalgia-type pain experienced being patients in the Swedish health care system. METHOD: Narrative interviews with 14 men who fulfilled the American College of Rheumatology criteria for classification of fibromyalgia. Content analysis was used when analysing the data. RESULTS: The results are described using five themes. Theme I 'Feeling afraid of being looked upon as being a whiner' highlights how the men endured a lot of pain before they sought health care, and how difficult it was to find a receptive listener. Theme 2 'Feeling like a guinea pig' shows that the men's feelings were twofold; they wanted examinations, even if these made them feel that they were being exposed to numerous treatments without any cure. Theme 3 'Feeling hopeful' describes the hope for a cure after having been referred to a specialist clinic. Theme 4 'Feeling neglected' illustrates being looked upon as an uninteresting patient and theme 5 'Feeling no recovery' illustrates the pain relief they gained, but not the actual cure. CONCLUSION: Men with FM type pain experienced a long wait before treatment at a specialist clinic as well as no continuity and follow-ups in primary care and general hospitals. Encounters with engaged and skilful staff promoted the men's well-being despite the fact that no cure was available. Not being respected led to a feeling of being neglected despite the care received. Thus, the men had to accept the fact that they would never recover.

  • 58. Rafii, Forough
    et al.
    Fatemi, Naima S
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    Melin-Johansson, Christina
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    Modanloo, Mahnaz
    Compliance to treatment in patients with chronic illness: A concept exploration2014Ingår i: Iranian Journal of Nursing and Midwifery, ISSN 1735-9066, Vol. 19, nr 2, s. 159-67Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Patients' compliance to treatment is an important indicator for evaluating the successful management in chronic illnesses. Despite the fact an applicable definition of compliance is required to suitable intervention and research, this concept is not clear and there is no consensus concerning its meaning, definition, and measurement. The aim of this study was to explore the concept of compliance and to formulate a working definition. Materials and Methods: Theoretical phase of Schwartz-Barcott and Kim's Hybrid Model of concept analysis was used to analyze the concept of compliance. Data were collected by using literature reviews. Medline, CINAHL, Ovid, Elsevier, Pro Quest and Blackwell databases were searched from 1975 to 2010 using the keywords "Compliance," "Non-compliance," "Adherence," and "Concordance." Articles published in English were selected if they included adult patients with chronic illnesses and reported attributes of compliance; 23 such relevant articles were chosen. Results: The attributes of compliance included patient obedience, ability to implement medical advice, flexibility, responsibility, collaboration, participation, and persistence in implementing the advices. Antecedents are organized into two interacting categories: Internal factors refer to the patient, disease, and treatment characteristics and external factors refer to the healthcare professionals, healthcare system, and socioeconomic factors. Compliance may lead to desirable and undesirable consequences. A working definition of compliance was formulated by comparing and contrasting the existing definitions with regard to its attributes which are useful in clinical practice and research. Conclusions: This finding will be useful in clinical practice and research. But this working definition has to be tested in a clinical context and a broad view of its applicability has to be obtained.

  • 59.
    Rejnö, A.
    et al.
    Institute of Health and Care Sciences, University of Gothenburg, The Sahlgrenska Academy, Gothenburg, Sweden .
    Berg, L.
    Institute of Health and Care Sciences, University of Gothenburg, The Sahlgrenska Academy, Gothenburg, Sweden .
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad. Institute of Health and Care Sciences, University of Gothenburg, The Sahlgrenska Academy, Gothenburg, Sweden .
    The narrative structure as a way to gain insight into peoples' experiences: One methodological approach2014Ingår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, nr 3, s. 618-626Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The narrative method is used in healthcare research, mostly in data collection but also in the analysis. Narrative approaches draw attention to how people tell about and create meaning of experiences. The aim of the article was to examine the narrative structure, the elements in the structure and their function and how these can be used in research to gain insights into experiences. Examples are taken from a material of narratives from a study where next of kin were asked to narrate their experiences of sudden and unexpected death from stroke. The narratives had a clear beginning, midpoint and ending. In the beginning, orientation of the narrated events was given. The narrated events were told to have a turning point constituted of complicating actions that lead to a resolution that solved the narrated event. The narratives were built up by multiple recaps into the narrated events and also consisted of asides - side narratives and flashbacks - events back in time. Use of a narrative structure can contribute with valuable information that might be missed with other analysis. The analysis can be used on its own, as a complement to other narrative analysis or even as a complement to other qualitative analysis. © 2013 Nordic College of Caring Science.

  • 60.
    Rejnö, Asa
    et al.
    Göteborgs universitet, Institutionen för vårdvetenskap och hälsa.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad. Göteborgs universitet, Institutionen för vårdvetenskap och hälsa.
    Berg, Linda
    Göteborgs universitet, Institutionen för vårdvetenskap och hälsas.
    Next of kin's experiences of sudden and unexpected death from stroke: a study of narratives.2013Ingår i: BMC Nursing, ISSN 1472-6955, E-ISSN 1472-6955, Vol. 12, nr 1, s. 13-Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Death always evokes feelings in those close to the afflicted person. When death comes suddenly the time for preparation is minimal and the next of kin have to cope with the situation despite their own sorrow. The suddenness is found to be stressful for the next of kin and communication both with healthcare professionals and information about what has happened has been found helpful. The aim of this study was to illuminate the experiences of next of kin from the sudden and unexpected death of a relative from acute stroke.

    METHODS: Data was collected over a 12-month period in 2009-2010. Twelve next of kin of patients cared for in stroke units who died suddenly and unexpectedly from stroke were interviewed using a narrative method. The narratives were analyzed using narrative thematic analysis.

    RESULTS: Three themes emerged showing facets of next of kin's experiences of a relative's sudden and unexpected death from stroke: Divided feelings about the sudden and unexpected death; Perception of time and directed attention when keeping vigil; Contradictions and arbitrary memories when searching for understanding.

    CONCLUSIONS: To have to live in the aftermath of severe stroke is absolute horror in people's imagination and death is seen as the lesser of two evils. The sudden and unexpected death totally pervades the next of kin's life, directs their attention to the dying person and even causes them to forget themselves and their own needs, and leads to difficulties in information intake. It is a challenge for the healthcare professionals to be able to identify the individual needs of the next of kin in this situation.

  • 61.
    Rejnö, Åsa
    et al.
    Gothenburg University, Sweden.
    Berg, Linda
    Gothenburg University, Sweden.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Ethical problems: In the face of sudden and unexpected death2012Ingår i: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 19:, nr 5, s. 642-653 originally published online 2 2011Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    When people die suddenly and unexpectedly ethical issues often come to the fore. The aim of the study was to describe experiences of members of stroke teams in stroke units of ethical problems and how the teams manage the situation when caring for patients faced with sudden and unexpected death from stroke. Data were collected through four focus group interviews with 19 team members in stroke-unit teams, and analysed using interpretive content analysis. Three themes emerged from the analysis characterized by information, decisions about care and support for the next-of-kin in the changing and uncertain situation, with mutual trust as the core. Mutual trust, both within the stroke team and with next-of-kin was seen by the stroke-team members as a way of handling ethical problems by administering care with the patient's best interest at heart.

  • 62.
    Rejnö, Åsa
    et al.
    Göteborgs universitet, Sahlgrenska akademin, Institutionen för vårdvetenskap och hälsa.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad. Göteborgs universitet, Sahlgrenska akademin, Institutionen för vårdvetenskap och hälsa.
    Berg, Linda
    Göteborgs universitet, Sahlgrenska akademin, Institutionen för vårdvetenskap och hälsa.
    Strategies for handling ethical problems in sudden and unexpected death2013Ingår i: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, ISSN ISSN 0969-7330, EISSN 1477-0989, Vol. 20, nr 6, s. 708-722Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    How ethical praxis is shaped by different contexts and situations has not been widely studied. We performed a follow-up study on stroke team members' experiences of ethical problems and how the teams managed the situation when caring for patients faced with sudden and unexpected death from stroke. A number of ways for handling ethical problems emerged, which we have now explored further. Data were collected through a three-part form used as base for individual interviews with 15 stroke team members and analyzed using both quantitative and qualitative content analysis. In the analysis, the approaches in the form were condensed into strategies, and the two different ways those strategies were preferred and used by the team members were shown. Hindrances perceived by the team members to impede them from working the preferred way were also revealed and grouped into eight categories.

  • 63.
    Rejnö, Åsa
    et al.
    The Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Göteborg, Sweden.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    von Post, Irene
    Åbo Academy University, Faculty of Caring Sciences, Vasa, Finland.
    The unexpected force of acute stroke leading to patients' sudden death as described by nurses2013Ingår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 27, nr 1, s. 123-130Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Stroke occurs suddenly and unexpectedly and its consequences can mean the difference between life and death. Research into stroke is extensive but largely focused on patients who survive. The aim of the study was to describe how nurses experience the patient's death and dying, when patients are afflicted by acute stroke and whose lives cannot be saved. The study had a descriptive design with a hermeneutical approach. Interviews were carried out with ten nurses in stroke units at three hospitals. Data were interpreted using hermeneutic textual interpretation based on Gadamer's philosophy. The study shows that sudden death, when unexpected forces intervene in the lives of patients afflicted by acute stroke, was described by the main theme sudden death - the unexpected force and the following three sub-themes: death comes unexpectedly and without warning to the patient; the relatives are at the mercy of the unexpected and the nurses find themselves in demanding situations. The new understanding emphasizes that the unexpected and demanding situations the nurses are put in can be understood as ethical dilemmas and value conflicts because they are not free to give their time to preserving the dying patient's dignity and are not able to give the good care they wish to. A more flexible organization could support the nurses in making use of the creative forces in the unexpected event which an acute stroke that leads to death constitutes.

  • 64. Sparud Lundin, Carina
    et al.
    Öhrn, Ingbritt
    Göteborgs universitet, Institutionen för vårdvetenskap och hälsa.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    From multidimensional support to decreasing visibility: A field study on care culture in paediatric and adult diabetes outpatient clinics2008Ingår i: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 47, nr 2, s. 180-190Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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 categories. The categories support of self-management and unfocused behaviour describes mostly similar strategies and attitudes in paediatric and adult diabetes care, while multidimensional support and decreasing visibility describes differences in characteristics of care culture in paediatric versus adult diabetes care. CONCLUSIONS: The decreased visibility might have consequences for vulnerable patients, such as those with insufficient metabolic control and self-management abilities. By illuminating shifting aspects of care culture, care providers can be given a basis for reflection and discussion of how the care is provided in their own setting and how different environmental conditions and care strategies can promote formal and informal contacts between patients and care providers.

  • 65. Sparud-Lundin, C
    et al.
    Öhrn, I
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Forsander, G
    Glycaemic control and diabetes care utilization in young adults with Type 1 diabetes2008Ingår i: Diabetic Medicine, ISSN 0742-3071, E-ISSN 1464-5491, Vol. 25, nr 8, s. 968-973Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives 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.Methods 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.Results 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.Conclusions 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.

  • 66.
    Strang, Susann
    et al.
    Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Box457, SE-405 30 Gothenburg, Sweden.
    Henoch, Ingela
    Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Box457, SE-405 30 Gothenburg, Sweden.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad. Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Box457, SE-405 30 Gothenburg, Sweden.
    Browall, Maria
    Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institute, Solna, Sweden .
    Melin-Johansson, Christina
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    Communication about existential issues with patients close to death-nurses' reflections on content, process and meaning2014Ingår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, nr 5, s. 562-568Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    ObjectiveEncountering dying patients with implicit existential questions requires the nurses to have positive and comfortable attitude to talking about existential issues. This paper describes the nurses' reflections on existential issues in their communication with patients close to death. MethodsNurses (n=98) were recruited from a hospital, hospices and homecare teams. Each nurse participated in five group reflection sessions that were recorded, transcribed and analysed using qualitative content analysis. ResultsThree domains and nine themes emerged. The content domain of the existential conversation covered living, dying and relationships. The process domain dealt with using conversation techniques to open up conversations, being present and confirming. The third domain was about the meaning of existential conversation for nurses. The group reflections revealed a distinct awareness of the value of sensitivity and supportive conversations. ConclusionThis study supports the assertion that experience of talking about existential issues and supporting environment make nurses comfortable when counselling patients close to death. It was obvious from this study that having the courage to be present and confirming, having time and not trying to solve' every existential problem were the most important factors in conversations with the patients close to death. Copyright (c) 2013 John Wiley & Sons, Ltd.

  • 67.
    Svedlund, Marianne
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Commentary on Svedlund M and Danielson E (2004) myocardial infarction: narrations by afflicted women and their partners of lived experiences in daily life following an acute myocardial infarction. Journal of Clinical Nursing 13, 438-446 - Response2005Ingår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 14, nr 3, s. 409-410Artikel i tidskrift (Övrigt vetenskapligt)
  • 68.
    Svedlund, Marianne
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Myocardial infarction: Narrations by afflicted women and their partners of lived experiences in daily life following an acute myocardial infarction2004Ingår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 13, nr 4, s. 438-446Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: The review of the literature showed that many people and their family members share feelings of distress after an acute myocardial infarction. Therefore, it is important to show how the illness affects the relationship in the couple's daily life when the closest relatives involved are men. AIM: The aim was to illuminate the meaning of lived experiences in daily life after an acute myocardial infarction, as narrated by afflicted women and their partners. METHODS: Nine women and their partners narrated their experiences three and 12 months after an infarction. The interview texts were then interpreted, using a phenomenological hermeneutic method, inspired by the philosophy of Ricoeur. The text was divided into meaning units that were condensed and abstracted. Two themes and eight sub-themes were then extracted from the text. RESULTS: The first theme was 'living in a changed life situation' with the sub-themes: 'showing consideration', 'taking responsibility', 'living side by side' and 'desiring what to do'. The second theme was 'looking to the future' with the sub-themes: 'feeling uncertain', 'feeling powerless', 'feeling limited' and 'feeling hope'. CONCLUSIONS: The results revealed that couples lived in a changed life situation, somewhat in 'discordance', and showed consideration to each other in order to protect the partner. There seemed to be a lack of verbal communication, but both women and their partners revealed that they sensed how their partners felt without verbal communication. In this 'discordance', couples may experience loneliness, in that they may not share feelings about the event and the situation it causes. RELEVANCE TO CLINICAL PRACTICE: Women and their partner have specific needs in daily living following an acute myocardial infarction. Therefore, nurses should acknowledge the specific needs for the female patient and the partner more clearly.

  • 69.
    Svedlund, Marianne
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Norberg, A.
    Department of Nursing, Umeå University, Umeå.
    Women’s narratives during the acute phase of their myocardial infarction2001Ingår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 35, nr 2, s. 197-205Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Aim. The purpose of this study was to illuminate the meaning of lived experiences during the acute phase of an acute myocardial infarction (AMI). Method. Ten women (< 60 years old) afflicted with AMI narrated their experiences during their stay in the coronary care unit (CCU). The interview texts were interpreted using a method with a phenomenological hermeneutic approach, inspired by the philosophy of Ricoeur. The text was divided into meaning units that were condensed and abstracted. Three themes were then extracted from the text. Findings. One theme was ‘oneself as vulnerable’ with the subthemes: ‘the feeling of being dependent upon others’, ‘the feeling of being insulted’ and ‘the feeling of being a troublesome person’. Another theme was ‘oneself as distanced’, with the subthemes: ‘not facing the reality’, ‘captive in an unreal situation’, and ‘inhibition out of concern for others’. The last theme was: ‘oneself as making sense’ with the subthemes: ‘acquirement of some insight’ and ‘discovery of a new meaning with life’. Conclusion. The reported comprehensive understanding revealed the phenomena guilt and shame. These, in combination with the experience of being in an unreal situation and the withholding of feelings may have led to a deterioration of communication. It seems that relatives and the staff at CCU were not allowed to share the burden of being afflicted with an AMI.

  • 70.
    Svedlund, Marianne
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Norberg, Astrid
    Umeå universitet. Institutionen för omvårdnad.
    Men's experiences during the acute phase of their partners' myocardial infarction1999Ingår i: Nursing in Critical Care, ISSN 1362-1017, E-ISSN 1478-5153, Vol. 4, nr 2, s. 74-80Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The men's narratives about the women reveal a disturbance in the balance of their daily life, showing how they, the men, perceive powerlessness, and also how they passively adapted themselves to what happened. The narratives reveal that the women are 'ignoring and withholding' their feelings and that they want to be as 'responsible and independent' as they used to be. The women are disclosed as 'not wanting to face reality': there is an enervating lack of communication.

  • 71.
    Svedlund, Marianne
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Norberg, Astrid
    Umeå universitet. Institutionen för omvårdnad.
    Nurses' narrations about caring for inpatients with acute myocardial infarction1999Ingår i: Intensive and Critical Care Nursing, ISSN 0964-3397, Vol. 15, nr 1, s. 34-43Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The purpose of this study was to examine the meaning of lived experiences of caring for people affected by acute myocardial infarction. Thirty-four registered nurses at a Coronary Care Unit in the north of Sweden narrated their experiences of this specialized care of inpatients. The interview texts were transcribed and then interpreted using a phenomenological-hermeneutic method, inspired by the philosophy of Ricoeur. Two groups of texts were identified. One comprised 'narratives about the patient' within which were the themes: 'distancing oneself from what is happening' and 'showing oneself as vulnerable'. The other was 'narratives about caring', with the themes: 'reading of', 'adapting', 'coming close' and 'helping'. Various views on caring were disclosed and interpreted with reference to Martin Buber's philosophy. A comprehensive understanding of caring as oscillations between the poles distance and relation was formulated.

  • 72.
    Svensson, G. L.
    et al.
    Department of Orthopaedics, Institute of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden .
    Wendt, G. K.
    Department of Orthopaedics, Institute of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden .
    Thomeé, R.
    Department of Orthopaedics, Institute of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden .
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    Patients' experience of health three years after structured physiotherapy or surgery for lumbar disc herniation2013Ingår i: Journal of Rehabilitation Medicine, ISSN 1650-1977, E-ISSN 1651-2081, Vol. 45, nr 3, s. 293-299Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objective: To describe the experience of health among patients 3 years after treatment with a structured physiotherapy model or surgery for lumbar disc herniation. Design: A qualitative research study. Subjects/patients: Patients were referred to the orthopaedic clinic at Sahlgrenska University Hospital with sciatica due to lumbar disc herniation. Twenty patients who were eligible for surgery were treated either with a structured physiotherapy model or with surgery. Methods: Open-ended interviews were conducted and analysed using content analysis. Results: Findings were grouped into two themes: feeling of well-being and feeling of ill-being. In the group treated with structured physiotherapy there were a high number of codes in the feeling of well-being theme. In the group treated with surgery there were a high number of codes in the feeling of ill-being theme. Conclusion: Patients treated with structured physiotherapy or surgery experienced feelings of well-being and ill-being 3 years after treatment. Patients treated with physiotherapy and surgery described varying experiences of health 3 years after treatment for lumbar disc herniation. It can be speculated that the experience of well-being may be explained by the ability of structured physiotherapy treatments to empower patients.

  • 73. Thorén, Ann-Britt
    et al.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Herlitz, Johan
    Axelsson, B
    Spouses' experiences of a cardiac arrest at home: An interview study2010Ingår i: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 9, nr 3, s. 161-167Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Introduction: In case of out-of-hospital cardiac arrest (OHCA) influence of a bystander spouse is decisive for the chance of survival. Aim: To describe spouses' experiences of witnessing their partners' cardiac arrest at home, focusing on the time before the event and when it happened. Methods: Interviews with fifteen spouses were recorded and transcribed verbatim. Qualitative content analysis was conducted. Results: In the domain entitled "Time before cardiac arrest", four themes emerged in the analysis process: "Lack of early warning signs", "Difficulty interpreting early warning signs", "Interpreting signs in the light of previous illness" and "Denial of serious illness". In the domain entitled "The cardiac arrest event", three themes emerged: "Perceiving the seriousness", "Being unable to influence" and "Doing what is in one's power". The emergency call services' (ECS) ability to instruct and help the spouses to do what they can becomes evident in these themes. Conclusion: Spouses who experienced OHCA demonstrated a lack of confidence in or ability to interpret early warning signs and symptoms. This lack of confidence also extended to the process of cardiopulmonary resuscitation (CPR). The support from the ECS and CPR training was acknowledged as helpful and important. Further research is required to determine which interventions can improve people's ability to intervene as early as possible.

  • 74.
    Udo, Camilla
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad. Gothenburg, Inst Hlth & Care Sci, Sahlgrenska Acad, Gothenburg, Sweden.
    Henoch, Ingela
    Gothenburg, Inst Hlth & Care Sci, Sahlgrenska Acad, Gothenburg, Sweden.
    Melin-Johansson, Christina
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    Surgical nurses’ work-related stress when caring for severely ill and dying patients with cancer after participating in an educational intervention on existential issues2013Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, nr 5, s. 546-553Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    AIM:

    The aim of this study was to describe surgical nurses' perceived work-related stress in the care of severely ill and dying patients with cancer after participating in an educational intervention on existential issues.

    METHODS AND SAMPLE:

    This article reports a mixed methods pilot study of an education programme consisting of lectures and supervised discussions conducted in 2009-2010 in three surgical wards in a county hospital in Sweden. The concurrent data collections consisted of repeated interviews with eleven nurses in an educational group, and questionnaires were distributed to 42 nurses on four occasions.

    RESULTS:

    Directly after the educational intervention, the nurses described working under high time pressure. They also described being hindered in caring because of discrepancies between their caring intentions and what was possible in the surgical care context. Six months later, the nurses described a change in decision making, and a shift in the caring to make it more in line with their own intentions and patients' needs rather than the organizational structure. They also reported decreased feelings of work-related stress, decreased stress associated with work-load and feeling less disappointed at work.

    CONCLUSIONS:

    Results indicate that it may be possible to influence nurses' work-related stress through an educational intervention. According to nurses' descriptions, reflecting on their ways of caring for severely ill and dying patients, many of whom had cancer, from an existential perspective, had contributed to enhanced independent decision making in caring. This in turn appears to have decreased their feelings of work-related stress and disappointment at work.

  • 75.
    Udo, Camilla
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Melin Johansson, Christina
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Existential Reflections among Nurses in Surgical Care2010Ingår i: Journal of Palliative Care, ISSN 0825-8597, Vol. 26, nr 3, s. 228-229Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives: To gain a deeper understanding of surgical nurses’ experiences of existential issues in cancer care.

    Methods: Written critical incidents were used to collect nurses’ descriptions and reflections of critical care situations involving existential issues. Individual face-to-face interviews were conducted as follow-up using semi-structured questions which were analysed with hermeneutical analysis.

    Preliminary results: The analysis showed that nurses in surgical care experience caring from different positions. Nurses either focus on the patient as a whole in the caring process or nurses focus more on medical information in the caring process. When focusing on the patient as a whole existential issues are considered to be a natural part of the caring process and nurses’ personal experiences help to enable encounters with the patients. When focusing more on the medical information in the caring process there was a transfer of responsibility to others, mainly the physicians.

    Preliminary conclusions: This study highlights that existential issues are indeed part of surgical cancer care derived from existential care situations. Nurses’ focus in the caring process differs. Nurses express different positions in caring and not all acknowledge patients’ existential issues as part of nurses’ responsibility. When lacking common strategies in the organization nurses derive existential caring strategies from personal experiences.

  • 76.
    Udo, Camilla
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    Melin-Johansson, Christina
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    Existential issues among nurses in surgical care - a hermeneutical study of critical incidents2013Ingår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 69, nr 3, s. 569-577Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Aims.  To report a qualitative study conducted to gain a deeper understanding of surgical nurses’ experiences of existential care situations.

    Background.  Existential issues are common for all humans irrespective of culture or religion and constitute man’s ultimate concerns of life. Nurses often lack the strategies to deal with patients’ existential issues even if they are aware of them.

    Design.  This is a qualitative study where critical incidents were collected and analysed hermeneutically.

    Methods.  During June 2010, ten surgical nurses presented 41 critical incidents, which were collected for the study. The nurses were first asked to describe existential care incidents in writing, including their own emotions, thoughts, and reactions. After 1–2 weeks, individual interviews were conducted with the same nurses, in which they reflected on their written incidents. A hermeneutic analysis was used.

    Findings.  The majority of incidents concerned nurses’ experiences of caring for patients’ dying of cancer. In the analysis, three themes were identified, emphasizing the impact of integration between nurses’ personal self and professional role in existential care situations: inner dialogues for meaningful caring, searching for the right path in caring, and barriers in accompanying patients beyond medical care.

    Conclusion.  Findings are interpreted and discussed in the framework of Buber’s philosophy of the relationships I-Thou and I-It, emphasizing nurses’ different relationships with patients during the process of caring. Some nurses integrate their personal self into caring whereas others do not. The most important finding and new knowledge are that some nurses felt insecure and were caught somewhere in between I-Thou and I-It.

  • 77.
    Udo, Camilla
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Melin Johansson, Christina
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Health care staff’s discussions of existential issues in cancer care2010Ingår i: Changing Health. 6th International Conference on Social Work in Health and Mental Health. 28th June - 2nd July 2010, Dublin, Ireland., 2010Konferensbidrag (Refereegranskat)
    Abstract [en]

    Objectives: A qualitative study was made to explore healthcare staff’s discussions about existential issues when caring for patients with cancer on a surgical ward, as described in supervision sessions.

    Methods: Secondary content analysis of twelve tape-recorded supervision sessions was used. The sessions lasted for two hours every third week during one year. The supervision sessions were conducted at a surgical clinic in a county hospital in the middle of Sweden. Twenty-one participants, 25 to 55 years of age (MD=38) who had worked on a surgical clinic for 1 to 30 years (MD=10) participated.

    Findings: The analysis showed that reflections about existential issues do exist among healthcare staff in surgical wards. There are barriers, in staff themselves as well as in the organisation hindering them to encounter patients’ existential needs which is illustrated by the domain: “Health care staff’s discussions of their existential  dilemmas” and the themes “feelings of powerlessness”, “identifying with patients”, and “getting close or keeping a distance”. Staff observed that patients have existential needs which are illustrated by the domain: “Health care staff’s discussions of patients’ existential distress” and the themes “being in despair” and “feelings of isolation”.

    Conclusions:  This study shows that healthcare staff in surgical wards is conscious of patients’ existential distress. Yet staff lack strategies to encounter patients’ existential issues. There is a need for knowledge about the meaning of existential issues and education for staff working in a surgical ward and how to encounter patients’ existential needs.

  • 78.
    Udo, Camilla
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Melin-Johansson, Christina
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Existential issues among health care staff in surgical cancer care - Discussions in supervision sessions2011Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, nr 5, s. 447-453Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: The aim was, through analysis of dialogues in supervision sessions, to explore if health care staff in surgical care discussed existential issues when caring for cancer patients. Method: A secondary analysis of the content of twelve tape-recorded supervision sessions (18 h) was conducted. The study analysed the dialogue content in supervision sessions involving a group of eight participants who worked at a surgical clinic at a county hospital in central Sweden. The sessions were held every third week during the course of one year. Results: The analysis showed that surgical health care staff contemplates existential issues. The staff discussed their existential dilemmas, which hindered them from meeting and dealing with patients' existential questions. This is illustrated in the themes: "feelings of powerlessness", "identifying with patients", and "getting close or keeping one's distance". The staff also discussed the fact that patients expressed existential distress, which is illustrated in the themes: "feelings of despair" and "feelings of isolation". Conclusions: This study shows that there are existential issues at a surgical clinic which health care staff need to acknowledge. The staff find themselves exposed to existential dilemmas when caring for cancer patients. They are conscious of patients' existential issues, but lack strategies for dealing with this. This study highlights a need to provide support to staff for developing an existential approach, which will boost their confidence in their encounters with patients

  • 79.
    Udo, Camilla
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad. Health Care Sciences Post Graduate School Karolinska Institute Stockholm Sweden .
    Melin-Johansson, Christina
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för hälsovetenskap.
    Henoch, Ingela
    Institute of Health and Care Sciences The Sahlgrenska Academy University of Gothenburg Gothenburg Sweden.
    Axelsson, Bertil
    Department of General Surgery Östersund Hospital Östersund Sweden .
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad. Institute of Health and Care Sciences The Sahlgrenska Academy University of Gothenburg Gothenburg Sweden .
    Surgical nurses’ attitudes towards caring for patients dying of cancer: a pilot study of an educational intervention on existential issues2014Ingår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 23, nr 4, s. 426-440Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This is a randomised controlled pilot study using a mixed methods design. The overall aim was to test an educational intervention on existential issues and to describe surgical nurses' perceived attitudes towards caring for patients dying of cancer. Specific aims were to examine whether the educational intervention consisting of lectures and reflective discussions, affects nurses' perceived confidence in communication and to explore nurses' experiences and reflections on existential issues after participating in the intervention. Forty-two nurses from three surgical wards at one hospital were randomly assigned to an intervention or control group. Nurses in both groups completed a questionnaire at equivalent time intervals: at baseline before the educational intervention, directly after the intervention, and 3 and 6 months later. Eleven face-to-face interviews were conducted with nurses directly after the intervention and 6 months later. Significant short-term and long-term changes were reported. Main results concerned the significant long-term effects regarding nurses' increased confidence and decreased powerlessness in communication, and their increased feelings of value when caring for a dying patient. In addition, nurses described enhanced awareness and increased reflection. Results indicate that an understanding of the patient's situation, derived from enhanced awareness and increased reflection, precedes changes in attitudes towards communication.

  • 80.
    Wennerberg, M M
    et al.
    Institute of Health and Care Sciences Sahlgrenska Academy University of Gothenburg Gothenburg Sweden.
    Eriksson, M
    Center on Salutogenesis Department of Health Sciences University West Trollhättan Sweden.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad. Institute of Health and Care Sciences Sahlgrenska Academy University of Gothenburg Gothenburg Sweden.
    Lundgren, S M
    Institute of Health and Care Sciences Sahlgrenska Academy University of Gothenburg Gothenburg Sweden.
    Unravelling Swedish informal caregivers' Generalised Resistance Resources2016Ingår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, nr 3, s. 602-613Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background

    Interlinked aspects, as demographic changes, accentuation on home-based community care, increase the amount of informal caregivers to older adults. To preserve and enhance their health are subsequently essential and a reoccurring topic on political agendas. How this may be achieved is vividly debated and mainly focused on elimination of risks and stresses associated with caregiving. Within health promotion, the salutogenic approach focusing on resources to health is recognised and this approach was used to acquire necessary knowledge to enhance caregivers' health ‘the salutogenic way’.

    Aim

    To present Generalised and Specific Resistance Resources (GRRs/SRRs) described by caregivers as stemming from themselves and their carerecipients.

    Methodology

    To unravel caregivers' GRRs/SRRs, a theory-driven, explorative design guided by definitions of GRRs/SRRs was utilised. Data were collected through salutogenically guided interviews with 32 Swedish caregivers in one municipality. Inductively, data were analysed using content analysis to identify each caregiver's SRRs and thereafter deduction to identify the population's GRRs.

    Findings

    The synthesis of findings, caregivinghood, encompasses several domains of GRRs seemingly involved in caregivers' movements towards health. In the caregiver domain, ‘Being someone significant in my own eyes’ unites the essence of having access to GRRs stemming from oneself and ‘Being “blessed” with a co-operative co-worker’ that of having access to GRRs stemming from the carerecipient. This may be the core in an orientation to life which creates positive life experiences, since it enables caregivers to find a ‘fit’ between the possible and desired when resolving challenges.

    Conclusion and implications

    Health-promoting initiatives should be conducted as partnerships between formal and informal sources due to the versatility of GRRs. It also seems essential to empower both parties so that they may make sense of their situation and use their available GRRs/SRRs in this ‘joint venture’ of managing. Thereby, their motivation to continue the journey through Caregivinghood may be enhanced.

  • 81.
    Wennerberg, Mia M. T.
    et al.
    Sahlgrenska Academy, University of Gothenburg, Gothenburg.
    Lundgren, Solveig M.
    Sahlgrenska Academy, University of Gothenburg, Gothenburg.
    Eriksson, Monica
    University West, Trollhättan.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för omvårdnad. Sahlgrenska Academy, University of Gothenburg.
    Me and You in Caregivinghood – Dyadic resistance resources and deficits out of the informal caregiver's perspective2019Ingår i: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 23, nr 8, s. 1041-1048Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objective: To present Specific and Generalized Resistance Resources (SRRs/GRRs) and Deficits (SRDs/GRDs) described by 32 informal caregivers as originating from themselves and their older adult carerecipients as dyads. Method: Salutogenic interviewing was used to assemble data from caregivers. A theory-driven, memo-guided and comparative analysis using within- and across- case analysis was applied to unravel resources and deficits influencing the outcomes when they managed tension associated with caregiving. Findings: Living in fellowship in a well-functioning dyad unites the essence of having access to dyadic SRRs/GRRs. Such access enables dyads to use their specific dyadic tension management to resolve challenges through cooperation, derives ‘positive’ life-experiences and preserves dyad functioning. Struggling alone in a malfunctioning dyad indicates the presence of dyadic SRDs/GRDs counteracting such a development. If these SRDs/GRDs accumulate, the dyad become less able to resolve challenges, ‘negative’ life-experiences accumulates, the carerecipient's capability to cooperate decreases, caregiver's workload increases, the dyad becomes increasingly malfunctioning and moves towards the point where caregiving ends due to lack of usable SRRs/GRRs. Conclusions: Findings reveals the complex duality of caregiving and the necessity to assess all available SRRs/GRRs and SRDs/GRDs for caregiving dyads, including out of the carerecipient's perspective. Appropriate ‘salutogenic’ support reduces SRDs/GRDs, makes available SRRs/GRRs usable or provides alternative SRRs/GRRs, thereby dyadic tension management and dyadic functionality is preserved during this phase of life labelled Caregivinghood. The study adds new knowledge to the salutogenic framework regarding central, theoretical concepts and suggests how data for health promoting initiatives conducted the ‘salutogenic way’ may be acquired. 

  • 82.
    Wennerberg, Mia M.T.
    et al.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg.
    Eriksson, Monica
    Center on Salutogenesis, Department of Health Sciences, University West, Trollhättan.
    Lundgren, Solveig M.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad. Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg.
    Unravelling Swedish informal caregivers' Generalised Resistance Deficits2018Ingår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, nr 1, s. 186-196Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    In salutogenic theory, individual/contextual, immaterial/material characteristics enabling movements towards health are labelled Specific and Generalised Resistance Resources, SRRs/GRRs, and characteristics counteracting such movements Specific and Generalised Resistance Deficits, SRDs/GRDs. The aim of this paper was to present SRDs and GRDs described by caregivers as stemming from themselves and their care recipient. Guided by salutogenic theory, an explorative design was used to collect data through interviews with 32 Swedish informal caregivers. During the theory-driven analysis, SRDs were unravelled using within-case approaches. To be able to unite them as GRDs across cases, a serviceable GRD definition was developed from the existing theoretical GRR definition. In findings, SRDs are visualised in citations and GRDs described in detail. Caregivers' experiences of SRDs/GRDs are presented as themes: 'Experiencing personal deficiencies', when stemming from themselves; and 'Struggling with an uncooperative co-worker', when stemming from their care recipients. Findings indicate that if these themes dominate a caregiver's view of life, she/he seems to have reached the 'breaking point' when caregiving ends due to lack of usable SRRs/GRRs. To prolong the time until this occurs, support, making otherwise unusable SRRs/GRRs usable, is needed. When designing this type of 'salutogenic' support, it seems essential to involve the target group (e.g. caregivers, care recipients), to ascertain what their SRRs/GRRs and SRDs/GRDs may consist of. Such knowledge regarding SRRs/SRDs could be used to design individualised support, and regarding GRRs/GRDs to design generalised support at group level. This study suggests how such new knowledge regarding resistance resources and deficits could be acquired.

  • 83.
    Wennerberg, M.M.T.
    et al.
    Institute of Health and Care Sciences, Sahlgrenska Academy, Gothenburg, Sweden.
    Lundgren, S
    Institute of Health and Care Sciences, Sahlgrenska Academy, Gothenburg, Sweden.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Using the salutogenic approach to unravel informal caregivers resources to health: Theory and methodology2012Ingår i: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 16, nr 3, s. 391-402Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives: This article describes the theoretical foundation and methodology used in a study intended to increase knowledge concerning informal caregivers resources to health (in salutogenesis; General Resistance Resources, GRRs). A detailed description of how the approach derived from salutogenic theory was used and how it permeated the entire study, from design to findings, is provided. How participation in the study was experienced is discussed and methodological improvements and implications suggested. Method: Using an explorative, mixed method design, data was collected through salutogenically guided interviews with 32 Swedish caregivers to older adults. A constant comparative method of analysis was used to identify caregiver-GRRs, content analysis was further used to describe how participation was experienced. Findings: The methodology unraveled GRRs caregivers used to obtain positive experiences of caregiving, but also hindrances for such usage contributing to negative experiences. Mixed data made it possible to venture beyond actual findings to derive a synthesis describing the experienced, communal context of the population reliant on these GRRs; Caregivinghood. Participating in the salutogenic data-collection was found to be a reflective, mainly positive, empowering and enlightening experience. Conclusion: The methodology was advantageous, even if time-consuming, as it in one study unravelled caregiver-GRRs and hindrances for their usage on individual, communal and contextual levels. It is suggested that the ability to describe Caregivinghood may be essential when developing health-promoting strategies for caregivers at individual, municipal and national levels. The methodology makes such a description possible and suggested methodological improvements may enhance its usability and adaptability to other populations. © 2012 Taylor & Francis.

  • 84.
    Westin, L.
    et al.
    School of Life Sciences, University of Skövde, Skövde, Sweden.
    Öhrn, I.
    The Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Residents' experiences of encounters with relatives and significant persons: A hermeneutic study2012Ingår i: Nursing and Health Sciences, ISSN 1441-0745, E-ISSN 1442-2018, Vol. 14, nr 4, s. 495-500Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The aim of this study was to explore and interpret the meaning of residents' experiences of encounters with their relatives and other significant persons in nursing homes. Twelve residents in three different nursing homes in a western Sweden municipality were interviewed. The method used was hermeneutical text analysis. Three themes emerged in the interpretation of the text: being pleased, being someone, and being inconvenient. These themes were also described through seven subthemes: to be happy to have someone, to make someone else happy, going back in life, to be together in a community, not being alone, to be disconnected, and to be a burden. The study concludes that it is important for nurses in nursing homes to develop a deeper insight into what various social contacts can mean for residents. To develop this knowledge, it is important that nurses in nursing homes can be educated, and supported by clinical supervision, in relation to residents' experiences of encounters with relatives and other significant persons. © 2012 Wiley Publishing Asia Pty Ltd.

  • 85. Westin, L
    et al.
    Öhrn, I
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Visiting a nursing home: Relatives' experiences of encounters with nurses2009Ingår i: Nursing Inquiry, ISSN 1320-7881, E-ISSN 1440-1800, Vol. 16, nr 4, s. 318-325Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The purpose of this study was to explore and interpret the meaning of

    relatives' experiences of encounters with nurses when visiting

    residents in nursing homes. Thirteen relatives of residents in three

    nursing homes in Sweden were interviewed. The interviews were

    tape-recorded and transcribed verbatim. The method used was

    hermeneutical text analysis. Four themes emerged in the analysis and

    interpretation of the whole text: 'being paid attention to', 'being

    ignored', 'being involved' and 'being safe and secure'. A further

    interpretation of the findings shows a deeper understanding of the

    meaning of relatives. This meaning was revealed as being invited into

    an encounter with nurses and gave a sense of community but the opposite

    was being ignored and left outside. This study gives a deeper

    understanding of the meaning of encounters between relatives and nurses

    in nursing homes; it also illuminates how these encounters also can

    affect the care of the residents. This new understanding can hopefully

    offer support for nurses during their encounters with relatives and

    optimise the ability to provide a positive outcome for residents in

    nursing homes.

     

  • 86. Westin, Lars
    et al.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Encounters in Swedish nursing homes A hermeneutic study of residents´ experiences2007Ingår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 60, nr 2, s. 172-180Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Encounters in Swedish nursing homes: a hermeneutic study of residents’ experiences Aim. This paper is a report of a study to illuminate and interpret the meaning of residents’ experiences of encounters with nurses in nursing homes. Background. A large number of older people suffer from illness and become dependent on other people in their daily living. These people are often in need of care in nursing homes. It is assumed that encounters between nurses and residents are of importance in how residents experience care in nursing homes. Method. Twelve residents from three nursing homes in Sweden were interviewed in 2004–2005 about their experiences in encounters with nurses. The interviews were tape-recorded and transcribed verbatim. A hermeneutic method was used to describe and interpret the meaning of residents’ experiences. Findings. Three themes emerged: ‘being somebody’, ‘being nobody’ and ‘being in a community’. The encounters had both positive and negative influences on residents, expressed as being somebody and belonging somewhere or being nobody and not being seen as a person or simply being left out of things. Encounters between residents and nurses have a mutual dependency where residents certainly have some influence on the relationship. The nurses have both an influence on the relationship and a professional responsibility for the outcome of encounters with residents. Conclusion. The insights gained from the study can guide nurses in their encounters with residents in nursing homes so that they feel respected as unique human beings and part of a community.

  • 87.
    Ödliing, Gunvor
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, E
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Borup, S
    Norberg, A
    Personalens syn på bröstcancer och omvårdnad av kvinnor som opererats för bröstcancer.: Paper presenterat vid Årligt möte för psykosocial forskning om bröstcancer, Karolinska sjukhuset i Stockholm.1997Konferensbidrag (Övrigt vetenskapligt)
  • 88.
    Ödling, Gunvor
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Borup Christensen, Svend
    Caring for women with recurrent breast cancer- care givers´ descriptions in connection with supervision sessions at a surgical ward.: The 11th Annual Scientific Meeting of the European Association for Cancer Education, Warzawa1998Konferensbidrag (Övrigt vetenskapligt)
  • 89.
    Ödling, Gunvor
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Borup Christensen, Svend
    Norberg, Astrid
    Umeå universitet. Institutionen för omvårdnad.
    Living with breast cancer: Care givers´ perceptions in a surgical ward1998Ingår i: Cancer Nursing, ISSN 0162-220X, Vol. 21, nr 3, s. 187-195Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Caring for women with breast cancer has potential for increasing care giver distress and anxiety. Knowledge of the threats implicit in the disease and treatment as well as overidentification with the patient form the basis for this outcome. In order to describe perceptions of breast cancer as an illness, semistructured interviews were carried out with 37 care givers at a surgical department. The interviews were tape-recorded and transcribed verbatim. An analysis was then carried out of the stories told by the care givers about breast cancer as an illness. The results indicated that breast cancer as an illness gave rise to predominantly negative and dark associations among the care givers. Their experiences of caring for women in critical stages of the illness over many years appear to have had a negative influence on them. Death itself, and even more so the process leading to the end, were very tangible in their stories. The article concludes that care givers on a surgical ward have a fragmented picture of the patients and need to be given opportunities to follow the total care process. Those care givers who were able to follow the women's stages of illness throughout more often had a positive picture.

  • 90.
    Ödling, Gunvor
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Borup, S
    Norberg, A
    Umeå universitet.
    Care givers´ perceptions of nursing care and support to women with breast cancer. The 10th Annual Scientific Meeting of the European Association for Cancer Education, Bryssel.1997Konferensbidrag (Övrigt vetenskapligt)
  • 91.
    Ödling, Gunvor
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Borup, S
    Norberg, Astrid
    Umeå universitet.
    Personalens beskrivning av sin syn på bröstcancer och omvårdnaden av kvinnor som opererats för bröstcancer. FoU- Konferens anordnad av Jämtlands läns landsting och Mitthögskolan i Östersund.1996Konferensbidrag (Övrigt vetenskapligt)
  • 92.
    Ödling, Gunvor
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Jansson, Lilian
    Umeå universitet. Institutionen för omvårdnad.
    Caregivers´ descriptions of patients with advanced breast cancer in connection with supervision sessions in a surgical ward2001Ingår i: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 24, nr 1, s. 28-34Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The purpose of this study was to describe the content of caregivers' (health care professionals') presentation of care situations as told at supervision sessions. For 1 year, 21 caregivers in a surgical ward of a county hospital in the middle of Sweden participated in a clinical supervision session 2 hours every third week. The participants in the supervision sessions were divided so as to form three mixed groups composed of registered nurses, practical nurses, physiotherapists, and physicians. The purpose of the supervision sessions was to give caregivers the opportunity to reflect on different care situations in a way that contributed to the development of patient care. The 38 supervision sessions were tape-recorded and transcribed verbatim. The transcripts were analyzed using a qualitative content analysis. The caregivers described difficult care situations focusing on the feelings of patients, relatives, and caregivers, with an emphasis on the caregivers' being dominant. Difficult care situations were described as giving caregivers feelings of discomfort, powerlessness, and reduced self-esteem. These feelings were described as arising in connection with caring for women with advanced breast cancer and other seriously ill patients in an organization lacking clear goals and rules. This study found that supervision sessions offering an opportunity to reflect on the difficult care situations are important for caregivers. These sessions seem therefore to be of vital importance for the future development of cancer care on the surgical ward.

  • 93.
    Ödling, Gunvor
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Jansson, Lilian
    Umeå universitet. Institutionen för omvårdnad.
    Obstacles to good nursing care of women with breast cancer care givers´ descriptions in connection with supervision sessions at a surgical ward2000Ingår i: Journal of Cancer Education, ISSN 0885-8195, Vol. 15, nr 3Artikel i tidskrift (Refereegranskat)
  • 94.
    Ödling, Gunvor
    et al.
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap.
    Norberg, Astrid
    Institutionen för omvårdnad, Umeå universitet.
    Danielson, Ella
    Mittuniversitetet, Fakulteten för humanvetenskap, Institutionen för hälsovetenskap. Göteborgs universitet.
    Care of women with breast cancer on a surgical ward: Nurses' opinions of the need for support for women, relatives and themselves2002Ingår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 39, nr 1, s. 77-86Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: In Sweden women with newly diagnosed breast cancer are admitted to surgical wards in order to undergo surgery and receive postoperative care. On these wards, nursing staff take care of women both with newly diagnosed breast cancer and those with cancer in advanced stages. Nurses have to meet the varying needs of patients and their relatives. AIM: To describe nurses' opinions of the need for care and support for women and their relatives in connection with surgery for breast cancer, as well as their own need for support on a surgical ward. METHODS: Thirty-one nurses from a surgical ward participated in semi-structured interviews. The interviews were tape-recorded and transcribed verbatim. Thereafter a step-by-step, qualitative content analysis was carried out. RESULTS: The nurses described the need to talk and receive information as being the most important among women and their relatives, as well as among themselves. Only a few nurses mentioned the need for physical care among the women. Contact with relatives was described as being almost nonexistent. There was a discrepancy between what nurses described as important needs and how these needs were provided for. CONCLUSION: This study shows that what the nurses described as being the most important needs, and the way how these needs were provided for, was more often seen from a theoretical point of view with few examples of self-experienced situations in the daily care. Needs among women and their relatives seemed to be not fully known to nurses and therefore, possibly, were not met. Nurses themselves had a pronounced need for support, which was sometimes unsatisfactorily met.

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