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1.
  • Ahlberg, Mona, 1966- (författare)
  • Being cared for in an Intensive Care Unit – family functioning and support
  • 2022
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • When COVID-19 came as an uninvited guest into our everyday lives, nursing in intensive care was affected and thus the studies contain data from both before and during the COVID-19 pandemic.Before the pandemic, most intensive care units, which care for patients with critical illness in a technical setting, allowed family members to visit the patient 24 hours a day. The intensive care unit is a stressful and frightening environment for both the patient and their family. They can be affected both mentally and physically, showing symptoms such as difficulty sleeping, stress and depression. The intensive cared patient often does not remember anything from the time they were cared for in the intensive care unit, and the family needs to explain and recount this unconscious time. During the pandemic, this changed, with restrictions and limited opportunities to visit the hospital and patient due to virus outbreaks. Family members received information about the patient's medical condition by phone from a physician.   The overall aim of this thesis was to explore and conceptualise the family functioning of families with a family member treated in the intensive care unit. There was also an intention to describe and evaluate how an intervention affects the family and individual family members in families where a family member received intensive care.In these studies, qualitative, quantitative, as well as mixed methods were utilised. Participants were adult intensive cared patients from seven intensive care clinics, and their families. The results examined between families are based on the patient and family characteristics.   The results from study I show that families who have experienced COVID-19 and with a family member who was cared for in an intensive care unit, have existential thoughts.   Study II shows no major impact on family function between families, but the answers differ within the families who experienced intensive care.   In study III, concerning families experiencing intensive care and attending family health conversations, there was an awareness of family function. The conversations brought the family closer together, through improved understanding of each other.  In study IV family functioning, hope and sense of coherence were com-pared among the participants in two intervention groups: Family health conversations and support group conversations. Family functioning and hope were higher in the group that participated in the family health conversations and comprehensibility, meaningfulness and vitality were higher among the participants in the support group conversation.  By exploring how family function affects the individual family member and the family as a unit during critical illness and intensive care, new ways of working can be strengthened in the care of patients and their families.    
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2.
  • Hellqvist, Carina, 1976-, et al. (författare)
  • Effects of self-management education for persons with Parkinson's disease and their care partners : A qualitative observational study in clinical care
  • 2020
  • Ingår i: Nursing and Health Sciences. - : John Wiley & Sons. - 1441-0745 .- 1442-2018. ; 22:3, s. 741-748
  • Tidskriftsartikel (refereegranskat)abstract
    • Persons with Parkinson's disease and their care partners want support from healthcare to develop the skills to handle everyday life with disease. Earlier findings indicate that participants of the self‐management program Swedish National Parkinson School experience several benefits of the program. The purpose of this qualitative observational study was to explore if participants had implemented the strategies of self‐monitoring included in the program, and use them to communicate health care status and needs in clinical encounters. Data was collected 3–15 months after participation in the program and analysed using constant comparative analysis. Three categories were evident: “Self‐observation in everyday life”, “Self‐care activities to promote health” and “Managing emotional impact of Parkinson's Disease”. Categories were linked together in a core category that highlight the use of self‐management strategies described by participants during clinical encounters. Results confirmed that persons with Parkinson's disease and care partners use the techniques of self‐observation in their everyday lives. Observations of effects in clinical care can be a valuable approach to evaluate the outcomes educational interventions and their benefits for individuals and health care.This article is protected by copyright. All rights reserved.
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3.
  • Hellqvist, Carina, 1976- (författare)
  • Self-management support to handle everyday life with Parkinson´s disease
  • 2020
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Background: Being diagnosed with Parkinson´s disease (PD) is a life-altering experience. The long-term condition requires continuous adjustments to the everyday life not only of the person affected, but also for care partners. There is still insufficient knowledge on how best to support this process of acceptance and adjustment to encourage self-management.Aims: The aim of this thesis is to enhance the knowledge and understanding of self-management for persons with PD (PwPD) and their care partners. Furthermore, to investigate whether the self-management intervention Swedish National Parkinson School can be used as a tool to support self-management, and how nurses specialised in the care of persons with Parkinson´s disease can tailor their support to encourage self-management in everyday life. Method and design: Both qualitative and quantitative designs and methods were used in the three studies included in this thesis. Participants included a total of 209 persons. Of these, 127 were persons with PD and 75 were care partners. Participants with PD were largely in the middle stages of the disease. The time since diagnosis ranged from less than one year to over 20 years, and most participants had lived with the disease for around five years. Participants were cared for at five separate outpatient clinics, both geriatric and neurological, in three county and two university hospitals across Sweden. Data collection included observations, interviews, self-reported questionnaires and audio-recordings of the National Parkinson School in clinical care. The overall results of this thesis were obtained using a qualitative approach, where the results of the three studies were analysed using qualitative thematic analysis as described by Braun and Clarke (2006).Results: In combining the results of the separate studies through thematic analysis three distinct but interrelated themes were evident. These described the processes and efforts of persons to accept, manage and adjust to everyday life with PD. The theme “A changed reality” involves participants´ descriptions of how life changed after the diagnosis of PD. For many this was a shock, and both the person affected and their care partners experienced a variety of emotions such as anger, denial and hopelessness. It changed their personal identities, their perception of themselves as individuals and as a couple. They worried about what the future would hold, and the uncertainty was hard to accept and handle. One strategy for processing and beginning to acknowledge the new situation involved speaking openly about the diagnosis. The second theme “Finding a new path”, involves a description of how, after accepting or at least acknowledging, their new reality, participants started to find ways of managing the impact of PD on everyday life, incorporating it into their current life and identity. Many felt new knowledge was needed and turned to books and websites on PD. An intervention which was appreciated in terms of providing tools for self-observation and self-knowledge was the Swedish National Parkinson School. Participants later used these techniques to communicate and observe symptoms and healthcare needs. Being an active participant in life and performing activities such as physical exercise or other activities they enjoyed were also used as a strategy to feel satisfaction in life. Participants frequently worked out self-care and compensatory strategies to handle everyday tasks. Another strategy they found comforting and helpful involved retaining a positive mind-set and believing that a good future lay ahead. In the third category “The companions”, the participants described self-management in everyday life as a task they performed together. Management of PD was considered the shared responsibility of the person affected and the care partner, but was also influenced by others such as family members and close friends. The Swedish National Parkinson School provided knowledge as a form of common ground for the person affected and the care partner. During the Swedish National Parkinson School, the social interaction involved in exchanging experiences and feeling support from others in the same situation was considered helpful and was much appreciated.Conclusions: Management of PD in everyday life involves both the person affected and the care partner. After the initial emotional reactions, alongside feelings of lost identity and an altered life, persons started to look to the future and were ready to find ways of handling the changed conditions of their everyday lives. Persons with PD and their care partners were now willing to learn more about PD and to find tools and strategies to help them manage its impact on their everyday lives. During this phase, they appreciated the support of the Swedish National Parkinson School intervention. In the intervention, they would meet others in the same situation to find support and exchange experiences. They also turn to healthcare for support in the process of self-management in everyday life. Nurses working specifically to support PwPD and their CP will need to tailor support taking into account the disease trajectory as well as the psychological processes involved in accepting and adjusting to PD to best fit the unique needs and wishes of every person with PD and their care partner.
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4.
  • Johansson, Helena, 1980-, et al. (författare)
  • The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease : A qualitative study
  • 2023
  • Ingår i: Chronic Respiratory Disease. - : Sage Publications. - 1479-9723 .- 1479-9731. ; 20
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Chronic obstructive pulmonary disease (COPD) is an inflammatory and irreversible lung disease. For next of kin caregiver burden can be a consequence of the situation of being close to a person affected by a chronic disease and in need of help. When there is an imbalance between stressors and resources to cope with the situation, caregiver burden emerges. Knowledge is sparse about how the caregiver burden is experienced by the next of kin. Therefore, the aim of this study is to identify and describe the caregiver burden experienced by next of kin of persons with severe COPD.METHOD: Qualitative interviews with 21 next of kin were conducted. Thematic analysis was used in accordance with the six steps of Braun and Clarke.RESULTS: The next of kin experience caregiver burden as 1) changed roles in daily life 2) putting life on hold 3) to stand aside. The next of kin are in need of support to manage daily life.CONCLUSIONS: The caregiver burden affect the next of kin physically and emotionally. To prevent advance consequences, person-centered care can be used to support the next of kin in the situation.
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5.
  • Johansson, Helena, 1980-, et al. (författare)
  • To live a life with COPD - the consequences of symptom burden
  • 2019
  • Ingår i: International Journal of COPD. - Auckland, New Zealand : Dovepress. - 1176-9106 .- 1178-2005. ; 14, s. 905-909-
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Chronic obstructive pulmonary disease (COPD) is a prevalent disease as with its symptom and treatment gives a burden for the affected person, family, health care and finances. Today the knowledge and understanding are sparse regarding COPD affected person´s own lived experiences about the symptom burden and its effect on their daily life.  Due to this knowledge gap the aim of this study was to identify and describe the symptom burden and its effect on daily life in people with COPD based on their own lived experiences.Subject and Method: Eleven males and fourteen females in GOLD stage III and IV within an age of 58-82 years were interviewed. An interview guide guided the face-to-face interviews. Data was analyzed with Thematic Analysis following the six steps according to Braun and Clarke.Results: The result show one theme; An altered everyday life. The altered everyday life lead to a need of support to handle the everyday life and  different strategies to live as desired. Persons with COPD need to take the day as it comes dependent on the status of the day. The life is not easy to plan, and the day must be taken as it comes. The life is handled with strategies in breathing techniques, take care of the home and garden as well as the emotions. Support from the next of kin, society and the health care is important.Conclusion: This study provides insight in that persons with COPD in stage III and IV have an altered life caused by the symptom burden. They must struggle with strategies to handle everyday life. There is a need of support from next of kin and society to facilitate life, but this support needs to be well-balanced.
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6.
  • Kiwi, Mahin, 1954- (författare)
  • Dementia across cultural borders : Reflections and thought patterns of elderly Iranians with dementia in Sweden, their relatives and staff at a culturally profiled nursing home
  • 2018
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Introduction: Today’s multicultural society has resulted in major changes, with healthcare undergoing significant modifications. Healthcare workers and patients are increasingly confronted with “cultural” backgrounds other than their own. The world’s population is ageing, and the number of people with dementia is growing, resulting in a growing number of older people with a foreign background whose care needs have increased at different rates. Migration does not only mean moving from one place to another; it also involves the transition of an individual’s lifestyle, life views, social and economic adjustments that may lead to certain changes. These transitions from the “old” to the “new” way of life and from a life without dementia to a life with dementia involve making sense of life’s changes.Aim: The aim of study I was to explore the experiences and perceptions of dementia among Iranian staff working in a culturally profiled nursing home (CPNH). The aim of studies II and III was to explore relatives’ decisions to end caregiving at home, and Iranian families’ and relatives’ attitudes towards CPNHs in Sweden. The aim of study (IV) was to explore how the residents with dementia at the CPNH expressed the feeling of “home”.Method: This thesis is based on more than one year’s fieldwork. The empirical material is based on interviews and observations. Three groups of participants were interviewed and observed: 10 people with dementia (IV), 20 family caregivers and relatives (II and III, respectively) and 34 staff members (I). The interviews were conducted in Persian/Farsi, Azerbaijani, English and Swedish. The choice of language was always up to the participants. All the interviews were audio-recorded, transcribed verbatim in the respective languages and then translated later into Swedish. The analysis of the material was based on content analysis blended with ethnography.Results: Study I shows that people from different culturally and linguistically diverse backgrounds could have different perceptions of what dementia entails. A lack of knowledge concerning dementia affects how staff approach these people.Study II shows that the CPNH is crucial when deciding to cease caregiving at home. It is important to ensure that relatives with dementia are cared for by someone who speaks the same mother tongue. The results indicate that positive feelings of relief or comfort are dominant responses among the participants, some of whom even feel pride in the high standard of care provided by the home.In Study III, most participants based their views on a comparison between the CPNH and Iranian nursing homes after the Islamic Revolution. Negative views of the nursing home were evaluated alongside what the respondents considered to be typically Iranian. In Study IV, the results show that people with dementia’s personal experiences of home played a great role, and although none of the participants felt at home, all of them stated that the CPNH was a place to live in.Conclusion: Perceptions of dementia can be based on cultural and traditional understanding, although this can shift through transition and knowledge accumulation. A lack of knowledge concerning dementia and residents’ sociocultural background, generational differences and incoherence, aligned with staff members’ different sociocultural backgrounds, created many challenges. The staff wanted to learn more about dementia, to be able to manage daily communication with the residents. On another point, the staff admitted that only being able to speak a person’s native language was not enough to claim that they were actually communicating. Family caregivers’ decisions to end caregiving at home involve mutuality, capability and management, but decision-making sometimes has nothing to do with violating a person’s autonomy and is more about protecting the person. The family caregivers do care for frail elderly family members. What has changed due to a transition is the structure and construction of family caregiving. The consequences of communication difficulties between staff and the residents have led to a small degree of social involvement, which in turn affects residents’ daily social state. Overall, many family members stated that the CPNH resembled Iran too much, which disturbed them.The residents thought of home as a geographical location, but also connected it with both positive and negative feelings. Furthermore, the CPNH reminded some of the residents of the nicer side of life back home in Iran, while for others it brought back sad experiences and memories from the past. Nevertheless, the nursing home, due to memories and experiences of life in Iran, “home”, was a place to be and to live.
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7.
  • Ahlberg, Mona, 1966-, et al. (författare)
  • Family Health Conversations create awareness of family functioning.
  • 2020
  • Ingår i: Nursing in Critical Care. - : Wiley. - 1362-1017 .- 1478-5153. ; :2, s. 102-108
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The whole family is affected if one family member is critically ill. The Family Health Conversation Intervention may give the family tools that support healthier family functioning.AIMS AND OBJECTIVES: The aim of this study was to identify which components of family function are affected when families participate in Family Health Conversations.DESIGN: A secondary analysis was performed of existing qualitative interviews. The Family Health Conversation is an intervention where nurses ask the family reflective questions, and reflection is made possible in three conversation sessions.METHODS: This study included transcribed data from 13 follow-up interviews from seven families attending Family Health Conversations after three and 12 months. Data were analysed with narrative analysis, focusing on family function.RESULTS: Three themes were identified. The families' family functioning had been supported with: improved understanding of each other-there was an understanding of being in the same situation but still having totally different experiences; more concern for each other-they talked about their different experiences and felt they had become closer to each other; and a process of working through-they had experienced working through various experiences, standing by and supporting, and then being able to move on.CONCLUSIONS: The Family Health Conversation Intervention is provided to families, accompanied by nurses. The families in this study gained an awareness of their family function that brought the family closer because of improved understanding of each other and the situation. The families experienced openness, and the family members spoke more freely with each other, which facilitated the progress of working through the experience of critical illness and helped to maintain healthy family functioning.RELEVANCE TO CLINICAL PRACTICE: It is important to have an overall perspective and to recognize the patient and the family as equally important within the family for awareness of family function.
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  • Appelin, G, et al. (författare)
  • A comprehensive picture of palliative care at home from the people involved
  • 2005
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 9:4, s. 315-324
  • Tidskriftsartikel (refereegranskat)abstract
    • The purpose of this study was to identify the comprehensive picture of palliative care in the home, as experienced by the people involved. The study is a secondary analysis of three phenomenological studies including six cancer patients, six next of kin and six district nurses. Data were collected in qualitative interviews using an interview guide. The interviews were tape-recorded and transcribed verbatim. In this secondary analysis, data were analysed by hermeneutic analysis guided by Gadamer. The guiding questions during the reading were: Is there an advantage receiving palliative care at home? Is there a disadvantage receiving palliative care at home? The findings indicate that the advantages of palliative care at home is, striving for normal life, including the care in the home composed of physical care and emotional/mental care. Striving for normal life also includes emotional feelings, safety and resources and policies which regulates this activity. Disadvantages of palliative care at home are commitment, composed of adaptation and extra work, and demands, composed of frustration and uncertainty. If the people involved are to be able to manage the situation and optimize living while dying, there must be support and resources facilitating the situation. © 2004 Elsevier Ltd. All rights reserved.
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11.
  • Back, Christina, 1953-, et al. (författare)
  • Interpretativ fenomenologisk analys
  • 2015. - 2
  • Ingår i: Handbok i kvalitativ analys. - Stockholm : Liber. - 9789147111657 ; , s. 148-161
  • Bokkapitel (övrigt vetenskapligt/konstnärligt)
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12.
  • Back, Christina, et al. (författare)
  • Interpretativ fenomenologisk analys
  • 2019. - 3
  • Ingår i: Handbok i kvalitativ analys. - Stockholm : Liber. - 9789147129706 ; , s. 165-178
  • Bokkapitel (övrigt vetenskapligt/konstnärligt)
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13.
  • Bergdahl, Elisabeth, 1962-, et al. (författare)
  • Creating theory : Encouragement for using creativity and deduction in qualitative nursing research
  • 2023
  • Ingår i: Nursing Philosophy. - : Blackwell Publishing. - 1466-7681 .- 1466-769X. ; 24:4
  • Tidskriftsartikel (refereegranskat)abstract
    • Texts about theory in nursing often refer to theory construction by using inductive methods in a rigid way. In this paper, it is instead argued that theories are created, which is in line with most philosophers of science. Theory creation is regarded as a creative process that does not follow a specific method or logic. As in any creative endeavour, the inspiration for theory creation can come from many sources, including previous research and existing theory. The main idea put forward is that deductive qualitative research approaches should play a key role in theory creation. Furthermore, there is a need to differentiate between theory creation and theory justification. A model that emphasizes the creative aspects of theory creation and theory justification using qualitative approaches is presented. The model suggests that knowledge development is a deductive trial-and-error process where theory creation is followed by testing. Scientific theory creation and justification are presented as an iterative process that is deductive in that a testable hypothesis is derived from the theory. If the hypothesis is falsified, then the theory needs modification or might be altogether wrong. Several factors can block the creative process, both in theory development and in finding ways to test a theory in the justification phase. Some of these blockers are the idea of 'building blocks' and the inductive view of science often brought forward in nursing. Other blockers include striving for consensus and adherence to existing nursing philosophies and existing theories. Research and knowledge development are creative processes, and following predefined methods is not enough to ensure scientific rigour in qualitative nursing research.
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14.
  • Bergdahl, Elisabeth, 1962-, et al. (författare)
  • The theory of a co-creative process in advanced palliative home care nursing encounters : A qualitative deductive approach over time
  • 2019
  • Ingår i: Nursing Open. - : Wiley-Blackwell. - 2054-1058. ; 6:1, s. 175-188
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims and objectives: The aim of this study was to test the theoretical conceptualization of the co-creative process in home care nursing encounters over time.Method and design: This was a multiple case study with a deductive analysis of qualitative data over time, using interviews and observations collected from three cases.Results: The co-creative process was complex and contained main, sub- and micro-processes. Time was important and valuable, giving the patient and relatives space to adjust the process to their own pace. Some processes were worked on more intensively in accordance with the patients' and relatives' needs, and these are considered the main-process. The further developed theory of the co-creative process and its main, sub- and microprocesses can be understood as a concretization of how good nursing care can be performed within caring relationships in the context of advanced palliative home care.
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15.
  • Bergman, Eva, et al. (författare)
  • 'Grasp life again'. A qualitative study of the motive power in myocardial infarction patients
  • 2003
  • Ingår i: European Journal of Cardiovascular Nursing. - 1474-5151 .- 1873-1953. ; 2:4, s. 303-310
  • Tidskriftsartikel (refereegranskat)abstract
    • Myocardial infarction is the most common cause of death in Sweden today and is responsible for approximately 30% of all deaths. The aim of this study was to obtain increased knowledge and understanding of what motive power is and how it affects the individual's rehabilitation and return to a functioning daily life. Thirteen patients, six females and seven males, who had experienced a myocardial infarction, aged between 39 and 72 years and with a minimum interval from myocardial infarction diagnosis of at least 12 months, were interviewed. Grounded theory was the method used for data collection and analysis, since the method is focusing on social processes and interaction. The analysis process identified motive power as a core category: zest for life. The participants expressed a desire and a longing to continue living. The participants' experiences of their disease as well as being discharged from hospital forced them to reorientation. Autonomy, the individual's own active decision-making, plays a significant role in this zest for life. Care for was identified as the support base for zest for life. As health-care professionals we must, at a very early stage on the ward, form an idea of what kind of patient we have in front of us. ⌐ 2003 European Society of Cardiology. Published by Elsevier B.V. All rights reserved.
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  • Berterö, Carina, 1959- (författare)
  • Living with leukaemia : studies on quality of life, interaction and caring
  • 1996
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Leukaemia is one form of cancer disease, comprising both an acute or chronic form, and has a wide range of altemative therapy aids, as well as a highly unpredictable prognosis. This thesis is a study of 27 patients with acute and chronic leukaemia.The general aim of the present thesis was to acquire knowledge about quality of life (QOL) from the perspective of the adult individual with leukaemia. It was also to enquire how the health care system and the nursing staff can improve this individual's experienced quality of life. Data have been collected through qualitative interviews (articles I, II and III), observations, follow-up interviews and reflective conversations(articles IV and V). The data have been analysed using constant comparative analysis (articles I, II, IV and V) and narrative qualitative text analysis (article III).Quality of life was found to be experienced as 'a positive attitude to life' by those adults with acute leukaemia, and autonomy and interpersonal relationships were of great importance in experiencing this. Those with chronic leukaemia experienced quality of life as 'life satisfaction'. Even here interpersonal relationships played a major role, as did self-esteem, performance ability and social ability. When explaining the differentprofiles in quality of life experienced by those adults with acute and chronic leukaemia, uncertainty was the phenomenon found. Adults with acute leukaemia experienced uncertainty concerning the prognosis, recurrence, aggravations and set-backs. Those with chronic leukaemia were uncertain about adjusting their lives, changing life-styles as well as being in doubt. Both groups described this uncertainty as not feeling secure, not being in control and being undecided.Transition, i.e. the individual passing from one phase to another, was the core category found when studying the interaction between adults with leukaemia and their nursing staff. This transition could be described in three stages. First, being a person and trying to maintain a social status. Second, becoming a patient, accepting the disease and feeling insecure in this totally new situation. Finally, the patient becomes a leukaemia patient, isolating her/himself and becoming aware of the disease and its side-effects.In the study about the care supplied by the nursing staff and demanded by the leukaemia patients, the findings produced two core categories; routines and interaction. The care supplied was identified as routines, which could be seen as regular courses of procedures and a way of bringing order into daily life. Routines could also be a distancing manoeuvres to manage stress when working with seriously ill people. The care demanded by these leukaemia patients was human interaction. The leukaemia patient wants to be treated as a human being, with mutual respect, concern etc. The patients want to participate and interact while still maintaining their self-respect and individual integrity.This thesis points out that the QOL of those adults with leukaemia could be improved by the health care system and the nursing staff through caring for them as fellow beings, with respect and giving them autonomy and self-control. If the nurses and nursing staff are to be able to care for leukaemia/cancer patients, they have to care for themselves. If they become more aware of their own feelings and reactionS, they will also become more attentive to the patients' experiences and needs.
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20.
  • Berterö, Carina, 1959-, et al. (författare)
  • Receiving a diagnosis of inoperable lung cancer : Patients' perspectives of how it affects their life situation and quality of life
  • 2008
  • Ingår i: Acta Oncologica. - : Informa UK Limited. - 0284-186X .- 1651-226X. ; 47:5, s. 862-869
  • Tidskriftsartikel (refereegranskat)abstract
    • Lung cancer is a disease with many biomedical and psychological symptoms. The diagnosis and treatment of lung cancer induces adverse effects. Having an inoperable lung cancer there are few possibilities of being cured. Management of patients with inoperable disease is directed at relieving local or systemic symptoms. The purpose of this study is to describe how it affects the patients' life situation and quality of life. Data was collected by qualitative interviews where the patient's lived experiences were articulated. Twenty-three Swedish patients diagnosed and starting palliative treatment for inoperable lung cancer were interviewed. The interviews were audio-taped and transcribed verbatim. Data were interpreted trough interpretive phenomenology. Six themes were identified that were important for the informants' experience of their life situation and quality of life. The themes were: Experience of uncertainty, including time of waiting and thoughts, experience of hope, about a prolonged life, network as support, being treated as the person they are thoughts of death, is there time to conclude their lives?, feelings of shame and guilt, they have caused the disease by themselves and next of kin reactions, sadness, guilt, worries and anger. These six themes gave a structure presenting the essence: Living as usual. Maintaining independency and integrity were important, as well as maintaining status, being treated as the person they always had been and that they experience that they had a meaning to fulfill in life. They were living as usual. The findings of this study point out the importance of improving the care of people afflicted with lung cancer, as well as promoting support for the next of kin, since they are significantly important for these patients' experiences of quality of life. This knowledge and understanding will be useful for development of interventions and guidelines for treatment. © 2008 Taylor & Francis.
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  • Berterö, Carina, 1959-, et al. (författare)
  • The double-edged experience of healthcare encounters among women with endometriosis : a qualitative study
  • 2018
  • Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell Publishing Inc.. - 0962-1067 .- 1365-2702. ; 27:1-2, s. 205-211
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims and objectivesTo identify and describe the experience of healthcare encounters among women with endometriosis.BackgroundEndometriosis is a “hidden” chronic gynaecological disease appearing in every 10th woman of fertile age. Different manifestations of pain are the main symptoms, often leading to impaired physical and mental health, and lower quality of life. Previous research on healthcare experiences among women with endometriosis has focused on diagnostic delay and experiences of encountering general practitioners.DesignA qualitative, interpretive, phenomenological approach was used.MethodsWe interviewed nine women aged 23–55, with a laparoscopy-confirmed diagnosis of endometriosis. The interviews were recorded and transcribed verbatim. The data were analysed following the steps of the interpretive phenomenological approach.ResultsTwo themes were identified in the interview transcripts: being treated with ignorance and being acknowledged. The essence: “the double-edged experience of healthcare encounters” emerged from the themes. The women's experience was double-edged as it involved contradictory feelings: the encounters were experienced as both destructive or constructive. On the one hand, the destructive side was characterised by ignorance, exposure and disbelief. On the other hand, the constructive side made the women feel acknowledged and confirmed, boosting their self-esteem.ConclusionsThe new and important aspects of the findings are that the experience of healthcare encounters is for the first time expressed as double-edged: both destructive and constructive. The experience was of specific importance as it affected the women's perceptions of themselves and of their bodies.Relevance to clinical practiceThe information about the constructive side of the experience is of clinical valuable for all healthcare professionals (nurses, midwives and doctors) encountering these women, as it provides a new level of understanding of the experiences. The findings demonstrate both psychological and practical aspects that can help professionals to improve the encounters.
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  • Berterö, Carina, 1959- (författare)
  • Young women with breast cancer-using the healing tool : writing blogs
  • 2017
  • Ingår i: Nursing & Palliative Care. - London, United Kingdom : Open Access Text. - 2397-9623. ; 2:4, s. 1-5
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: This qualitative study aims to interpret and describe how young women diagnosed with a breast cancer uses blogs to manage daily life.Methods: 14 blogs written by women diagnosed with breast cancer aged between 25 and 38 years. These blogs were analysed using qualitative thematic analysis.Results: Four themes were identified in the data body illustrating what the women were writing about in their blogs: Experiencing frustration, The fear is bigger than death, Preparing for physical changes, Body and mind are in disharmony. These four themes ended up in a concluding theme: The healing effect of writing a blog.Conclusion: The young women used writing blogs as a healing activity. The writing was a channel for emotions and thoughts, but was also a way of sharing experiences and supporting each other. Their narratives revealed the impact of breast cancer experiences on their personal, familial and social lives. Reading blogs is an activity that could allow healthcare professionals to better understand these women’s life situation and needs.Implications for practice: Blogs could become a useful tool for healthcare professionals, relatives, patients and the people around them. By reading blogs, not necessarily commenting on or writing them, there will be a better and deeper understanding about the effects of a cancer diagnosis. Using blogs could facilitate the provision of requested and needed health care activities.
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24.
  • Brobäck, Gunilla, et al. (författare)
  • How next of kin experience palliative care of relatives at home
  • 2003
  • Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 12:4, s. 339-346
  • Tidskriftsartikel (refereegranskat)abstract
    • Primary health care teams are the teams responsible nowadays in Sweden for the greater part of the home health care system, providing palliative care in the patient's home. If palliative care in the home is to be ethically defensible, it should be voluntary from the point of view of the next of kin and should be designed in such a way that he or she receives different forms of support during the care period. The purpose of this paper is to explore the meaning of palliative care in the home as experienced by the next of kin. The data consist of transcripts from interviews with the next of kin. Giorgi's phenomenological method was selected as the method/analysis for this study, because it focuses on uncovering the meaning of experiences of the participants by studying descriptions from their perspective. A feeling of insufficiency is the phenomenon, which permeates all the five themes: adjustment, awareness, being perceived as a person, emotional effects and feelings of uncertainty. Because the informal carer/next of kin is a significant contributor to palliative care in the home, it is important to promote feelings of control and also self-efficacy.
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25.
  • da Costa vargens, Octavio, et al. (författare)
  • Living with breast cancer : Its effect on the life situation and the close relationship of women in Brazil
  • 2007
  • Ingår i: Cancer Nursing. - 0162-220X .- 1538-9804. ; 30:6, s. 471-478
  • Tidskriftsartikel (refereegranskat)abstract
    • The diagnosis and treatment of breast cancer induces adverse effects. In this interpretive phenomenological study, 11 Brazilian women diagnosed and treated for breast cancer were interviewed. Data included audiotaped interviews where the women's lived experiences were articulated. Data were interpreted through Heidegger's existential phenomenology. Themes that were found were interrelated and presented the essential structure of the essence the women were living-living side by side with the phantom of death. The 4 themes that were interpreted and identified were as follows: gaining a positive attitude for life, wanting to be recognized as a woman with certain needs, considering body image/self-image, and making efforts to hide. The findings of the study point out the importance of the fact that illness elicits more than fitting the body into traditional community expectations or surrendering the body to professional medicine. Even with all the deep changes in their lives and changed life priorities, the women want to carry on and live the best life they could. To put this idea in the front line makes the difference for the transition of these women. © 2007 Lippincott Williams & Wilkins, Inc.
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26.
  • Drott, Jenny, et al. (författare)
  • Experiences of Symptoms and Impact on Daily Life and Health in Hepatocellular Carcinoma Patients : A Meta-synthesis of Qualitative Research.
  • 2022
  • Ingår i: Cancer Nursing. - Philadelphia, PA, United States : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 45:6, s. 430-437
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The incidence of hepatocellular cancer (HCC) has continually increased. To achieve optimal supportive cancer care for HCC patients, it is important to consider patients' experiences and preferences.OBJECTIVE: This meta-synthesis aims to critically interpret how patients with HCC experience symptoms and the impact of the disease on daily life and health.METHODS: Searches were performed in the following bibliographic databases: PubMed, CINAHL, Web of Science, Scopus, PsycINFO, and Cochrane Library. In addition, searches were performed using Open Gray to identify relevant studies in the gray literature. The search was limited to studies published in English from 2009 to 2019. Five studies (124 participants) were identified, appraised, and ultimately interpreted and synthesized.RESULTS: Receiving an HCC diagnosis was overwhelming and affected the patients' entire lives. Three themes were identified based on the meta-synthesis: (1) disrupted life, (2) living with uncertainty, and (3) a changed body. Patients with HCC experience disrupted lives because of the cancer's effect on health and multidimensional symptoms.CONCLUSION: Available research on the experiences of HCC patients is limited. This meta-synthesis of available studies shows that being given a diagnosis of HCC is an overwhelming event. Our study findings show that an HCC diagnosis affected the individual's entire life.IMPLICATIONS FOR PRACTICE: It is important to identify the patients' physical, psychological, social, and existential needs during the investigation of their condition, during any curative treatment, and at the palliative stage of the disease.
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27.
  • Drott, Jenny, 1976- (författare)
  • Neurotoxic side effects and impact on daily life in patients with colorectal cancer with adjuvant oxaliplatin-based chemotherapy
  • 2018
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Introduction: Colorectal cancer (CRC) is one of the most common cancers globally. Chemotherapeutic drugs are frequently used in postoperative treatment. The platinum compound oxaliplatin (OXA) is an option for adjuvant treatment of patients with resected CRC, and has been shown to improve survival. OXA-induced neurotoxic side effects are common (e.g. sensitivity to cold, numbness). Neurotoxicity can interfere with the patient’s daily living and affect ability to carry out activities. Because there is no evidence for effective treatment in terms of eliminating neurotoxic side effects, the most successful approaches include early identification, reduction of dose and interruption of treatment. Current research has identified a need for patient-oriented evidence in terms of long-term follow-up of neurotoxicity.Aim: The overall aim of this thesis was to explore OXA-induced neurotoxic side effects in patients with colorectal cancer, and the influence on patients’ daily lives during and post OXA treatment.Methods: The thesis is based on four studies, and includes an analysis of medical records, as well as prospective quantitative and qualitative approaches with longitudinal data collection through a mobile phone-based system. The studies were performed at oncology departments in four hospitals in Sweden. Inclusion criteria were that patients should be at least 18 years of age, and should have been treated with chemotherapy, including OXA (FOLFOX, XELOX), in an adjuvant setting for CRC stages II-III. Study I had a retrospective design, and data involved (n=61) medical records. A structured protocol was used to evaluate the documentation of patients’ neurotoxic side effects. In studies II and III, ten patients were recruited using a strategy of purposeful and consecutive selection according to the inclusion criteria, where OXA-related neurotoxic side effects were assessed. A total of 10 interviews were carried out when neurotoxic side effects appeared (II), and after completed OXA treatment (3, 6 and 12 month’s follow-up) 25 repeated interviews were conducted (III). The prospective longitudinal study IV aimed to identify and assess patient-reported outcomes in terms of neurotoxic side effects, and their impact on patients’ daily activities (n=46). An Oxaliplatin-associated Neurotoxicity Questionnaire (OANQ) was administered in real time to indicate patientreported outcomes. In total, 370 questionnaire responses were available for analysis.Results: The results from the retrospective study (I) showed that a free description of the degree of neurotoxic side effects was given in the patients’ medical records. No formal assessment had been used in the documentation. The findings of the two qualitative studies contribute knowledge about how patients endure neurotoxic side effects early in the treatment phase, and how they learn to live with neurotoxicity in the long-term perspective. Patients coped with their side effects by developing different self-care strategies to restore normality in their daily lives (II-III). Neurotoxic side effects interferes with the patient’s daily activities in a variety of ways. These side effects change in terms of their character and their location in the body over time. The most frequent side effects during treatment were cold-precipitated tingling in the upper extremities and in the mouth/throat. At the end of treatment, neurotoxicity in the lower extremities was considered high and interfered with the patients’ daily activities. The results show significant differences between baseline data, and nine of the patients had not returned to baseline after one year (IV).Conclusion: Neurotoxic side effects affect patients’ daily activities in different ways, with an impact on their physical, psychological, emotional and social life. Patients endured and coped with their side effects in different ways involving self-care strategies to restore normality. The patients’ daily lives were affected by numbness and tingling in the legs and tingling in upper extremity, and they had learned to live with these side effects. The neurotoxic side effects changed character and localisation over time. These results should be taken into account when patients are informed about treatment, and in the dialogue about the benefits and risks.
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28.
  • Drott, Jenny, 1976-, et al. (författare)
  • Neurotoxic Side Effects Early in the Oxaliplatin Treatment Period in Patients With Colorectal Cancer
  • 2018
  • Ingår i: Oncology Nursing Forum. - Pittsburgh, PA, United States : Oncology Nursing Society. - 0190-535X .- 1538-0688. ; 45:6, s. 690-697
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE: To identify and describe experiences of patients with colorectal cancer (CRC) who have neurotoxic side effects early in the oxaliplatin treatment period, and how neurotoxicity affects their daily lives.PARTICIPANTS & SETTING: 10 patients with stage II-III CRC were included. All were treated with adjuvant oxaliplatin postoperatively and assessed neurotoxicity via a platform-independent mobile phone-based system. Patients were recruited from two hospitals in southern Sweden from November 2013 to August 2014.METHODOLOGIC APPROACH: Qualitative interview study conducted through open-ended, face-to-face, qualitative interviews. Thematic analysis was used.FINDINGS: A main theme was identified.IMPLICATIONS FOR NURSING: Nurses have an obligation to communicate the importance of early detection of neurotoxicity. Mobile phone technology seems to be a valuable tool for monitoring patient-reported neurotoxicity to improve communication and supportive care.
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29.
  • Drott, Jenny, 1976-, et al. (författare)
  • Oxaliplatin-Induced Neurotoxic Side Effects and Their Impact on Daily Activities
  • 2019
  • Ingår i: Cancer Nursing. - : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 42:6, s. E40-E48
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Oxaliplatin (OXA) is frequently used in the treatment of patients with colorectal cancer, and OXA-induced neurotoxic side effects are common. Reports on real-time patient-reported neurotoxic side effects and impact on the patient's daily activities are sparse in existing studies. Objective: The aim of this study was to identify and assess patient-reported OXA-induced neurotoxic side effects and their impact on the patient's daily activities, during and after chemotherapy. Methods: In a multicenter prospective longitudinal study, 46 chemo-naïve patients with colorectal cancer treated with postoperative adjuvant OXA-based chemotherapy were monitored during treatment and at 3-, 6-, 9-, and 12-month follow-ups. Patients were recruited from September 2013 to June 2016. In total, 370 Oxaliplatin-Associated Neurotoxicity Questionnaire responses were available for analysis. A mobile phone-based system was used to receive real-time assessments. Results: All patients reported neurotoxic side effects and impact on daily activities during treatment. The side effects changed in character and body location over time and had an impact on the daily activities. Conclusions: The high prevalence of OXA-induced neurotoxic side effects significantly interfered with the patients' daily activities. We found significant differences between baseline data and follow-up time points for neurotoxicity, and the patients had not returned to baseline after 1 year. Implications for Practice: The real-time assessment using mobile phone technology seems to be a valuable tool for monitoring patient-reported neurotoxicity and interventions for tailored care. Effectively identifying neurotoxicity and its impact on the patient's daily activities is important in supportive cancer care.
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30.
  • Fornander, Liselott, et al. (författare)
  • Development of trauma team cognition can be explained by "split vision": A grounded theory study
  • 2023
  • Ingår i: Journal of Interprofessional Care. - : TAYLOR & FRANCIS INC. - 1356-1820 .- 1469-9567. ; 37:5, s. 706-714
  • Tidskriftsartikel (refereegranskat)abstract
    • The aim of this study was to explore interaction of interprofessional hospital trauma teams. A theory about how team cognition is developed through a dynamical process was established using grounded theory methodology. Video recordings of in-real-life resuscitations performed in the emergency ward of a Scandinavian mid-size urban hospital were collected and eligible for inclusion using theoretical sampling. By analyzing interactions during seven trauma resuscitations, the theory that trauma teams perform patient assessment and resuscitation by alternating between two process modes, the two main categories "team positioning" and "sensitivity to the patient," was generated. The core category "working with split vision" explicates how the teams interplay between the two modes to coordinate team focus with an emergent mental model of the specific situation. Split vision ensures that deeper aspects of the team, such as culture, knowledge, empathy, and patient needs are absorbed to continuously adapt team positioning and create precision in care for the specific patient.
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31.
  • Grundström, Hanna, 1982- (författare)
  • Disclosing the invisible : experiences, outcomes and quality of endometriosis healthcare
  • 2018
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Introduction: Many women with endometriosis report that their symptoms are normalized and trivialized when they seek medical care and they often experience diagnostic delays, ineffective treatments and physiological, psychological and social consequences. However, there is a knowledge gap when it comes to women’s experiences of different aspects of endometriosis healthcare, and the quality of that care. Aim: The aim of this thesis was to identify, describe and analyse the experiences, encounters and outcomes of endometriosis healthcare from different perspectives. Design and Method: This thesis is a summary of four studies with different methods and designs. Study I and II were qualitative interview studies in which nine women with a laparoscopy-verified endometriosis diagnosis (study I) and 25 healthcare professionals (HCPs) (study II) described their experiences of healthcare encounters related to endometriosis symptoms. The interviews were analysed using interpretive phenomenology (study I) and conventional content analysis (study II). Study III was a cross-sectional observational comparative study measuring pain thresholds, health-related quality of life (HRQoL) and symptoms of anxiety and depression using quantitative sensory testing (QST) and questionnaires in order to determine pain thresholds in healthy women (n=55) and women with persistent pelvic pain (PPP), with (n=14) and without (n=23) a confirmed diagnosis of endometriosis. The correlations between pain thresholds and duration of PPP, HRQoL and symptoms of anxiety and depression were also analysed. Study IV was a quantitative observational study using register data from the National Quality Register for Gynaecological Surgery. Patient-reported experience measures (PREM) and patient-reported outcome measures (PROM) after benign hysterectomy were analysed and compared in women with and without PPP and endometriosis (study IV). Results: The results of the thesis are summarized in three themes: The struggle to visualize the pain, The endometriosis diagnosis as a key to understanding and enduring persistent pelvic pain and Healthcare encounters as potentially life changing. In the first theme, women and HCPs described the healthcare encounters concerning endometriosis symptoms as troublesome (study I, II). The women struggled with disclosing, visualizing and communicating their hidden pain to the HCPs (study I), and HCPs expressed insecurity and limited knowledge when caring for these women (study II). Study III showed widespread reduced pain thresholds among women with PPP compared with healthy controls, and a significant positive correlation between duration of PPP and reduced pain thresholds . Study III also showed a reduced HRQoL and higher prevalence of anxiety and depressive symptoms among women with PPP, which were also described by the women (study I).The importance of getting a diagnosis was described in the second theme by both women and HCPs (study I, II), but women with PPP with and without endometriosis diagnosis did not differ significantly in their pain thresholds or psychosocial outcomes in study III. Likewise, women with PPP with and without endometriosis gave more equal PREM and PROM answers than women in the pain-free comparison group. Overall, women undergoing hysterectomy on benign indications were satisfied with the experience and outcomes of the surgery (study IV).As described in the last theme, healthcare encounters could be constructive or destructive. Positive experiences could make the symptoms easier to endure. The constructive encounters were often characterized by a holistic approach and a care structured in multidisciplinary teams. Conclusion and clinical implications: The results suggest that PPP should be taken seriously and treated actively in order to minimize the risk of physiological and psychological consequences, such as reduced pain thresholds, lower HRQoL and symptoms of anxiety and depression. Unrelieved PPP could also be an explanatory factor for long-term physiological consequences, such as lower PREM and PROM after hysterectomy.High-quality endometriosis healthcare should provide an interaction of physical, psychological and social factors. If women experience that HCPs acknowledge their pain and the effect of pain on HRQoL and mental health, and are offered proper pain-relieving treatment, healthcare encounters could change their lives.
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32.
  • Grundström, Hanna, 1982-, et al. (författare)
  • Incidence of self-reported pelvic pain and risk factors for pain 1 year after benign hysterectomy : A register study from the Swedish National Quality Registry for Gynecological Surgery
  • 2023
  • Ingår i: Acta Obstetricia et Gynecologica Scandinavica. - : Wiley. - 0001-6349 .- 1600-0412. ; 102:10, s. 1359-1370
  • Tidskriftsartikel (refereegranskat)abstract
    • Introduction The primary aim of this study was to determine the incidence of patient-reported pain 1 year after hysterectomy for benign gynecological conditions in relation to occurrence of preoperative pain. The secondary aim was to analyze clinical risk factors for pain 1 year after the hysterectomy in women with and without preoperatively reported pelvic/lower abdominal pain. Material and methods This was a historical cohort study using data from the Swedish National Quality Registry for Gynecological Surgery on 16 694 benign hysterectomies. Data were analyzed using multivariable logistic regression models. Results One year after surgery, 22.4% of women with preoperative pain reported pelvic pain and 7.8% reported de novo pelvic pain. For those with preoperative pain younger age (adjusted odds ratio [aOR] 1.75, 95% confidence interval [CI] 1.38-2.23 and aOR 1.21, 95% CI 1.10-1.34 for women aged <35 and 35-44 years, respectively), not being gainfully employed (aOR 1.43, 95% CI 1.26-1.63), pelvic pain as the main symptom leading to hysterectomy (aOR 1.51, 95% CI 1.19-1.90), endometriosis (aOR 1.18, 95% CI 1.06-1.31), and laparoscopic hysterectomy (aOR 1.30, 95% CI 1.07-1.58), were clinically relevant independent risk factors for pelvic/lower abdominal pain 1 year after surgery, as were postoperative complications within 8 weeks after discharge. Meanwhile, clinically relevant independent risk factors for reporting de novo pain 1 year after surgery were younger age (aOR 2.05, 95% CI 1.08-3.86 and aOR 1.29, 95% CI 1.04-1.60 for women aged <35 and 35-44 years, respectively), and postoperative complications within 8 weeks after discharge. Conclusions The incidence of pelvic pain and de novo pain 1 year after hysterectomy was relatively high. Women with and without reported preoperative pelvic/lower abdominal pain represented clinically different populations. The risk factors for pelvic pain seemed to differ in these two populations. The differences in risk factors could be taken into consideration in the preoperative counseling and in the decision-making concerning method of hysterectomy, provided that large well-designed studies confirm these risk factors.
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33.
  • Grundström, Hanna, 1982-, et al. (författare)
  • Reduced pain thresholds and signs of sensitization in women with persistent pelvic pain and suspected endometriosis
  • 2019
  • Ingår i: Acta Obstetricia et Gynecologica Scandinavica. - : John Wiley & Sons. - 0001-6349 .- 1600-0412. ; 98:3, s. 327-336
  • Tidskriftsartikel (refereegranskat)abstract
    • INTRODUCTION: Endometriosis is a gynecological disorder that may cause considerable pelvic pain in women of fertile age. Determining pain mechanisms is necessary in order to optimize the treatment of the disease. The objective of the study was to evaluate pain thresholds in women with persistent pelvic pain with and without confirmed endometriosis, and healthy, unaffected controls, and analyze how pain thresholds in these cohorts related to duration of pelvic pain, quality of life, and symptoms of anxiety and depression.MATERIAL AND METHODS: Pain thresholds for heat, cold and pressure were assessed with quantitative sensory testing on six locations on a reference group of 55 healthy women and on 37 women with persistent pelvic pain who had been admitted for diagnostic laparoscopy on the suspicion of endometriosis. Validated instruments were applied to assess quality of life and symptoms of anxiety and depression. Data were analyzed by means of uni- and multivariate analysis of variance and Spearman's rank-order correlation.RESULTS: The women with persistent pelvic pain had significantly lower pain thresholds compared with the reference women. In the women with pain, no differences were observed in pain thresholds between women with (n = 13) and women without (n = 24) biopsy-proven endometriosis. The duration of pelvic pain correlated significantly positively with reduced pain thresholds, ie, the longer the duration, the more sensitization. In the persistent pelvic pain group, pain thresholds for heat correlated significantly with the Short Form Health Survey 36 dimension of bodily pain, and thresholds for cold correlated with Short Form Health Survey 36 bodily pain and with symptoms of depression.CONCLUSIONS: Our results showed widespread alterations in pain thresholds in women with persistent pelvic pain that are indicative of central sensitization and a time-dependent correlation. Women with pelvic pain and suspicion of endometriosis should probably be treated more thoroughly to prevent or at least minimize the concomitant development of central sensitization.
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34.
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35.
  • Hjelm, Katarina, 1958-, et al. (författare)
  • Social support as described by Swedish people diagnosed with type 2 diabetes mellitus.
  • 2009
  • Ingår i: Primary Health Care Research and Development. - : Cambridge University Press. - 1463-4236 .- 1477-1128. ; 10:1, s. 26-37
  • Tidskriftsartikel (refereegranskat)abstract
    • Social support can buffer the level and effects of stress. Diabetes mellitus (DM) requires self-care that is demanding and might cause stress. No previous studies focusing perceptions of persons with DM from their own perspective on the content, need and desire they might have for social support. Aim: To identify and describe the meaning of support and its impact on the life-situation of people diagnosed with Tye 2 DM in relation to gender, age, and duration of DM. Methods: Mixed Methods design combining Qualitative data collected by semi-structured interviews and quantitative data collected by Norbeck Social Support Questionnaire (NSSQ). Purposive sample – explore a complex concept 40 Swedish persons diagnosed Type 2 DM Aged 32-80 years (Md 59 yrs),24 men and 16 women. Duration of DM 0.5-39 yrs. Findings:  Heterogenous sample according to age, employment, duration of DM   but Homogenous picture of findings.  Meaning of the concept of support/social support: focus mainly on informative and emotional support. Non-supportive situations were described concerning the relationship and communication with the physician. Physicians not listening to the patient and whom informants perceived lacked competence in diabetes care were often described.  Support experienced while being diagnosed with DM was expressed by ♀, irrespective of duration of DM and yr diagnosed, as limited or non-existent negatively affecting their entire life- situation. Many claimed lack of support when diabetes was detected. Often diagnosed at health care centres in primary health care. Lack of informative support expressed as lack of competence and limited knowledge about DM in health care staff. When being managed at diabetes clinics adequate support was experienced. Need for support w as perceived as individual, varying and differing with regard to gender. Men were perceived to need more support than women, as women were considered having better networks. Young were stated to need more than older, as they have less experience and are going to live longer. Men scored higher on emotional support (p=0.021), aid (p=0.045) and network (p=0.026) than women More women were married but no differences in emotional support, social status and aid. Differences for those with grandchildren in emotional support (p=0.039) and in functional network properties (p=0.047) but not in aid. 20% of informants had lost an important relationship previous year. Mean number of people in network 6.5, r 1-20. In conclusion, DM demands knowledge about managing the disease and self-care, why informative and emotional support is important to gain control over the situation. Informants had perceived lack of support, particularly during the process of diagnosis of DM, in their contact with physicians and with primary health care.    
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36.
  • Hollman, Gunilla, 1953-, et al. (författare)
  • The meaning of quality of life among patients with familial hypercholesterolemia
  • 2004
  • Ingår i: Journal of Cardiovascular Nursing. - 0889-4655 .- 1550-5049. ; 19:4, s. 243-250
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Living with a genetic predisposition to disease may influence quality of life. The presence of premature disease can lead to an increased focus on family history and genetic predisposition.Objective: The purpose of this study was to describe quality of life in patients with the genetic disease, familial hypercholesterolemia, who are at an increased risk of premature coronary heart disease.Methods: Interviews from 12 adult patients with FH were analyzed using constant comparative analysis. The findings of this qualitative study revealed that for patients, quality of life was equated with harmony in life, the core category. Attaining harmony in life presumes satisfaction and togetherness. Cognizance of the threat of coronary heart disease and impending mortality is balanced by the support of togetherness and satisfaction that builds harmony in life.Conclusion: When caring for patients with familial hypercholesterolemia, it is important to meet each patient on his or her own level, and to support balance and their choices for maintaining or regaining harmony in life.
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37.
  • Hultsjö, Sally, et al. (författare)
  • Core components in the care of immigrants with psychoses: : A Delphi survey of patients, families, and health-care staff.
  • 2011
  • Ingår i: International Journal of Mental Health Nursing. - : Wiley. - 1445-8330 .- 1447-0349. ; 20:3, s. 174-184
  • Tidskriftsartikel (refereegranskat)abstract
    • The aim of the present study was to identify core components in the care of immigrants with psychosis in Sweden. Experts (n = 43) from different perspectives (immigrants, families, and health-care staff) were assembled and used to score the importance of statements regarding components in the care for a person with psychosis in three questionnaire rounds. After each round, the opinions were consolidated and compared to identify whether consensus was reached. Consensus was reached about the importance of being treated on equal terms, regardless of country of birth. Staff interest and respect, shown in different ways of understanding, was valued. Consensus could not be reached on approximately half of the statements, of which four tended to be ranked towards unimportant. Those included that staff should have specific cultural knowledge or that the patient should be allowed to decide whether to be cared for by male or female staff. Nor was it regarded as important to identify a person's religious or ethnic background. The results illustrate the importance of fundamental psychiatric nursing, which should enable nurses to identify and meet the basic needs of all patients, regardless of country of origin. Areas for which consensus was not reached illustrate a future challenge for health-care staff to identify situations when cultural clashes could appear. Staff should have strategies to accomplish cultural negotiations to build an effective treatment alliance with the patient, as well as the family, to meet individual needs.
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38.
  • Höglund, Markus, et al. (författare)
  • Dental clinicians recognizing signs of dental anxiety : a grounded theory study
  • 2023
  • Ingår i: Acta Odontologica Scandinavica. - : Taylor & Francis. - 0001-6357 .- 1502-3850. ; 81:5, s. 340-348
  • Tidskriftsartikel (refereegranskat)abstract
    • Introduction and ObjectiveThere is a knowledge gap in how dental clinicians recognise dental anxiety. The aim of this study was to identify, describe and generate concepts regarding this process.Materials and MethodsEleven semi-structured interviews were conducted with dental clinicians from the public dental service of ostergotland, Sweden. Purposive and theoretical sampling was used. Theoretical saturation was reached after eight interviews. The interviews were audio-recorded and transcribed verbatim. Classical grounded theory was used to inductively analyse data by constant comparative analysis.ResultsThe core category was identified as; 'the clinical eye', clinicians noticing behaviours possibly due to dental anxiety based on their knowledge, experiences, or intuition. The core category comprises the five categories: Sympathetic activation, Patient-reported anxiety, Controlling behaviours, Avoidance and Accomplishment. Initially there is usually uncertainty about whether a behaviour is due to dental anxiety or part of a patient's normal behaviour. To gain additional certainty, clinicians need to recognise a stressor as something in the dental setting by observing a change in behaviour, for better or for worse, in the anticipation, presence or removal of the stressor.ConclusionsClinicians identify patients as dentally anxious if their behaviour changes with exposure to a stressor.
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39.
  • Johansson, Helena, 1980- (författare)
  • A life in the shadow of COPD : Symptom burden, caregiver burden and strategies to manage daily life
  • 2024
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Chronic obstructive pulmonary disease (COPD) is an irreversible obstructive lung disease. In Sweden, 400,000 to 700,000 individuals are affected by this disease, and it is the third most common diagnosis. Among those with COPD, approximately 3% are at Global Initiative for Chronic Obstructive Lung Disease (GOLD) stages III and IV, representing severe disease. Persons affected by COPD have symptoms such as breathing problems, cough, and increased mucus production. The persons affected by COPD and the next of kin have an affected life. The affected person need support from the next of kin and from society.This thesis aimed to identify, describe, and deepen the knowledge around the symptom burden in persons affected by COPD, the caregiver burden of their next of kin, and the need for support.In the work described in this thesis, qualitative interviews were performed with 25 persons affected by COPD in GOLD stages III and IV and 22 of their next of kin. The interviews were analysed using thematic analysis, according to Braun and Clarke. Quantitative data were also collected from 112 affected persons and 71 of their next of kin, which comprised background data, symptom burden scored with Revised Memorial Symptom Assessment Scale (RMSAS), caregiver burden scored with Caregiver Reaction Assessment (CRA), sense of coherence scored with Sense Of Coherence 13 item (SOC13) and support scored with Social Support Questionnaire six items (SSQ6). These quantitative variables were analysed using frequencies, means and independent t-tests. The total data corpus was then compared and contrasted, examining similarities and differences using Teddlie and Tashakkori’s mixed method. Finally, an integrative review of 68 studies was performed, which identified and summarised the support given to persons affected by COPD and their next of kin. Also, the effects of the support given were also identified and summarised.The results showed that those persons affected by COPD have a symptom burden in the form of an altered everyday life. The next of kin experience a caregiver burden in the form of changed roles, putting life on hold, and standing aside. Taken together, the findings show that the person affected by COPD and the next of kin rate the burden in one way but express it slightly differently in their own words. The affected persons and their next of kin need support to handle everyday life. In Sweden, most support is currently in the form of giving information, promoting physical activity, and providing medical treatment, but these do not always have the desired effects.In conclusion, persons affected by COPD and their next of kin wish to have person-centred support, involving face-to-face consultations in the clinic or at home, to minimise the burdens that they face.
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40.
  • Johansson, I, et al. (författare)
  • Getting no respect : Barriers to mammography for a group of Swedish women
  • 2003
  • Ingår i: Health Care for Women International. - 0739-9332 .- 1096-4665. ; 24:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Mammography screening is a highly sensitive and specific method to detect breast cancer at an early stage. If screening campaigns are to be cost effective, compliance is valuable. However, many women do not attend when called for mammography screening. Our aim in this study is to understand and explain why women become nonattenders. A sample of 16 nonattending women, aged between 43 and 73 years, participated in this qualitative study, by interviews or written comments. The core category discovered in the data was "getting no respect." The informants did not feel respected from either the society or the health care system. Below this core category, two categories were identified: the mammography examination and affecting circumstances. The performance and its effects comprised the content of the category of mammography examination. The category affecting circumstances included knowledge about risk factors, prevention, and practical or emotional arguments.
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41.
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42.
  • Jonsson, Annikki, 1949, et al. (författare)
  • Men's perception of fatigue when newly diagnosed with localized prostate cancer.
  • 2007
  • Ingår i: Scand J Urol Nephrol. - : Informa UK Limited. ; 41:1, s. 20-25
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives. Cancer is a complicated issue both medically and psychosocially, and the process of the disease affects the whole human being. Fatigue is the commonest symptom associated with cancer and its treatment. Prostate cancer is the third commonest male cancer worldwide and the leading cause of male cancer death. The aims of this study were: (i) to identify whether fatigue is found in men with newly diagnosed localized prostate cancer (predominantly early-stage, very low tumour burden asymptomatic patients); and (ii) to gain a perception of whether fatigue has an influence on these men and to try to find out what the cause of this fatigue was. Material and methods. Sixteen men who had been newly diagnosed with localized prostate cancer were interviewed to determine whether fatigue is experienced by such men and whether it has an effect on them. Verbal transcripts were analyzed using hermeneutical interpretation. Results. Five equivalent fusions were identified according to the time when the participants received their diagnosis of early-stage prostate cancer. These fusions occurred successively, in three steps. The first step was Enclosing Intrapersonal Emotions and Enclosing Interpersonal Attachments, when the men were living in a kind of vacuum. Moving onto step two, another two fusions were triggered and contributed to a positive attitude: Reopening Intrapersonal Emotions and Reopening Interpersonal Attachments. Finally, at step three, a unifying fusion was identified: Living with a New Perspective. This study provides insights and new knowledge indicating that prostate cancer does not in itself cause fatigue. Conclusions. The clinical implications of these findings are that it is not possible to handle new and detailed information about prostate cancer at the first visit. The need for information occurs, however, relatively soon afterwards and it would seem appropriate to offer a new appointment within 1 week of the first visit.
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43.
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44.
  • Kapborg, I, et al. (författare)
  • The phenomenon of caring from the novice student nurse's perspective : A qualitative content analysis
  • 2003
  • Ingår i: International Nursing Review. - : Wiley. - 0020-8132 .- 1466-7657. ; 50:3, s. 183-192
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Caring has been seen as a nursing term/concept, including all the aspects that are used to deliver nursing care to patients. Sometimes caring has been conceptualized as a relational expression of human concern and as a collection of human activities that assists others. Aim: This study is to identify and describe the nature of the concept 'caring' from the novice student nurse's perspective. Methods: A total of 127 Swedish novice student nurses wrote comments in essay form to the question: 'what is your image of the concept caring?' Data were analysed using qualitative content analysis, with the use of the theoretical framework: 'doing' and 'being'. Findings: Three categories of caring were identified as 'doing', 'being' and 'professionalism'. The phenomena of caring and the caring process could be illustrated as including hand (doing), heart (being) and brain (professionalism). Conclusions: It is now time to make care more visible as a principle of practice and of moral action. This could be explicit in a clear professional framework and incorporated more fully into nursing education programmes. Caring is to take care of the entire human being physically, emotionally and intellectually. Nurses need to use hand, heart and brain in order to fulfil their commitments.
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45.
  • Klaeson, Kicki, 1960-, et al. (författare)
  • Losing the Elixir of Life : Sexuality in the Context of Prostate Cancer Narratives
  • 2012
  • Ingår i: Qualitative Health Research. - : Sage Publications. - 1049-7323 .- 1552-7557. ; 22:9, s. 1184-1194
  • Tidskriftsartikel (refereegranskat)abstract
    • In this phenomenological paper we explored how men diagnosed with prostate cancer experienced their sexuality from a lifeworld perspective. One essential meaning was identified: “having the elixir of life stolen”. This essential meaning had four constituents: “something that no longer exists”, “the threat to manhood”, “intimacy” and “staged manhood”. The lifeworld for these men comprised the dynamic interaction between being deprived of their “life’s elixir” and their ability to have and experience intimacy. The men were preoccupied with embodied experiences unfamiliar to them. They mourned the loss of sexuality in connection with their new life situation which threatened their identity. Their female partner was a great support, and with her the man could picture himself and at best renegotiate his sexuality. In the future, cancer care should be organized so as to enable all aspects of sexuality to be acknowledged and discussed.
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46.
  • Klaeson, Kicki, 1960-, et al. (författare)
  • Sexual identity following breast cancer treatments in premenopausal women
  • 2008
  • Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Informa UK Limited. - 1748-2623 .- 1748-2631. ; 3:3, s. 185-192
  • Tidskriftsartikel (refereegranskat)abstract
    • The phenomenon in focus for this study was the sexual identity preserved in premenopausal women due to breast cancer treatments. During the last decade the methods of breast cancer treatments have become more aggressive and many women have had to undergo surgery, radiation, and chemotherapy, as well as three to five years of hormone therapy. All these forms of treatment can have negative side effects on their sexual capability. The purpose of this study was to describe the meaning structure and the constituents of sexual identity in the lifeworld of premenopausal women. Six informants who had become menopausal following cancer treatment were interviewed about their experiences related to their sexual identity. Their ages varied between 38 and 48 years. The empirical phenomenological psychological (EPP) method was used. The meaning structure of the phenomenon could be symbolized using the metaphor of a bird which is pinioned and unable to fly. The women perceived their sexual identity as being inhibited in different ways. They felt odd and marginalized as women, and it was only within a support group that they felt completely confirmed. A future challenge for the health care professionals would be to care for their patients on the basis of their lifeworld experiences.
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47.
  • Klaeson, Kicki, 1960-, et al. (författare)
  • Talking About Sexuality : Desire, Virility, and Intimacy in the Context of Prostate Cancer Associations
  • 2008
  • Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
    • The number of middle-aged men with a diagnosis of prostate cancer has increased in recent decades. The aim of this study was therefore to explore how some of these middle-aged men experienced and talked about their sexuality. Four focus group discussions were performed in the context of associations for prostate cancer. Using qualitative content analysis, it was identified how the diagnosis was a threat to their male identity; the men‟s vulnerability as a group in society was made explicit. Their sexuality was diminished by their illness experiences, which was also connected with silence and sorrow. Their contact with health care services was precarious and as patients they often played a passive role when or if discussing issues of sexuality. The possibility of voluntarily joining a cancer association was probably highly beneficial for these men. During the sessions, several men expressed the opinion that it is always great to talk.
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48.
  • Mårtenson, Eva, 1953-, et al. (författare)
  • An observational study of parents/guardians information exchange in nursing care situations
  • 2007
  • Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
    • Objective: The purpose of study was to identify, describe and generate concepts in parents/guardians information exchange with health care professional in nursing care situations for their minors in paediatric outpatients units.Materials & Methods: In this observational study a grounded theory methodology was used. The study started with a descriptive observation of the units in a period of two weeks. After that, the 18 female and six male parents/guardians to minors, aged 10-16 years, were observed during their visit in three separate paediatric outpatients units; the paediatric day care unit, the paediatric neuro- urology and bowel disorders unit and the paediatric diabetic clinic. Data collection was made by using field notes from the observations and also notes from patient records were data sources. Totally 37 observations were conducted, all together in about a time of 10 hours. All data was analysed according to constant comparative analysis, the basis for grounded theory.Results: The data analysis gave the meaning of parents/guardians information exchange, generating the core category steadfast handle and containing of six categories: substitute manners, cooperation, shared aims, and resource, involvement and adult relations. Steadfast handle is manoeuvrings with the minor in exchanging information in paediatric nursing care situations, handling the situation as an adult in charge. Substitute manners are when acting instead of the minor and cooperation is acting together with the minor. Shared aims are when being active together with the minor in a focused way and resource is when supporting the minor in the situation. Involvement is when being concerned and curios about the minor in the situation. Adult relations are separated from the minor and are about the present adults’ particular communication. The categories relieved one another in priority and intensity and was to be seen all or just some of them in every single observation.Conclusion: This knowledge have relevance to health care professional to design paediatric nursing care situations and support and facilitate the parents/guardians handling in their minors nursing care.
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49.
  • Persson, Margareta, et al. (författare)
  • Care and support when a baby is stillborn : A systematic review and an interpretive meta-synthesis of qualitative studies in high-income countries
  • 2023
  • Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 18:8
  • Forskningsöversikt (refereegranskat)abstract
    • IntroductionApproximately 2 million babies are stillborn annually worldwide, most in low- and middle-income countries. Present review studies of the parental and healthcare providers' experiences of stillbirth often include a variety of settings, which may skew the findings as the available resources can vary considerably. In high-income countries, the prevalence of stillbirth is low, and support programs are often initiated immediately when a baby with no signs of life is detected. There is limited knowledge about what matters to parents, siblings, and healthcare providers when a baby is stillborn in high-income countries. ObjectivesThis systematic review and interpretive meta-synthesis aim to identify important aspects of care and support for parents, siblings, and healthcare professionals in high-income countries from the diagnosis of stillbirth throughout the birth and postpartum period. MethodsA systematic review and qualitative meta-synthesis were conducted to gain a deeper and broader understanding of the available knowledge about treatment and support when stillbirth occurred. Relevant papers were identified by systematically searching international electronic databases and citation tracking. The quality of the included studies was assessed, and the data was interpreted and synthesised using Gadamer's hermeneutics. The review protocol, including qualitative and quantitative study approaches, was registered on PROSPERO (CRD42022306655). ResultsSixteen studies were identified and included in the qualitative meta-synthesis. Experiences of care and support were interpreted and identified as four fusions. First, Personification is of central importance and stresses the need to acknowledge the baby as a unique person. The parents became parents even though their baby was born dead: The staff should also be recognised as the individuals they are with their personal histories. Second, the personification is reinforced by a respectful attitude where the parents are confirmed in their grief; the baby is treated the same way a live baby would be. Healthcare professionals need enough time to process their experiences before caring for other families giving birth. Third, Existential issues about life and death become intensely tangible for everyone involved, and they often feel lonely and vulnerable. Healthcare professionals also reflect on the thin line between life and death and often question their performance, especially when lacking collegial and organisational support. Finally, the fusion Stigmatisation focused on how parents, siblings, and healthcare professionals experienced stigma expressed as a sense of loneliness, vulnerability, and being deviant and marginalised when a baby died before or during birth. GRADE CERQual ratings for the four fusions ranged from moderate to high confidence. ConclusionsThe profound experiences synthesised in the fusions of this meta-synthesis showed the complex impacts the birth of a baby with no signs of life had on everyone involved. These fusions can be addressed and supported by applying person-centred care to all individuals involved. Hence, grief may be facilitated for parents and siblings, and healthcare professionals may be provided with good conditions in their professional practice. Furthermore, continuing education and support to healthcare professionals may facilitate them to provide compassionate care and support to affected parents and siblings. The fusions should also be considered when implementing national recommendations, guidelines, and clinical practice.
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50.
  • Rydé, Kerstin, 1959- (författare)
  • Gråtens betydelse för patienter och närstående i palliativ hemsjukvård
  • 2007
  • Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • AbstraktGråt är vanlig bland patienter och närstående men sällan studerat i palliativ vård. Gråten kan vara ett sätt för patienter och deras närstående att uttrycka sorg och hantera en situation fylld av stress som är orsakad av förluster, många allvarliga symtom och en nära förestående död.Studiernas övergripande syfte var att bidra till en djupare förståelse för vilken betydelse gråten har för patienter och deras närstående i palliativ hemsjukvård: Vad innebär gråten och hur påverkar den de berörda? Bandinspelade intervjuer gjordes med 14 patienter med cancersjukdom och 14 närstående i palliativ hemsjukvård. För att få en djupare förståelse genomfördes arbetet med ett hermeneutiskt metodologiskt angreppssätt enligt Gadamer.Resultatet visade att patienterna (studie I) beskrev olika dimensioner och funktioner av gråt; Intensiv och förtvivlad gråt för att ge uttryck för akuta behov: Stilla och sorgsen gråt som medvetet förlöste känslor; Tyst och tårlös gråt som en skyddande strategi. Som en tolkning av helheten sågs patienternas gråt (studie I) som ett sätt att uttrycka en inre känslomässig kraft, framkallad av olika faktorer, som orsakade förändringar i den nuvarande inre balansen. Genom att gråta öppet men också inombords skapades eller upprätthölls balansen. Studie (II) visade att de närstående upplevde att gråten var beroende av olika förutsättningar som attityder och mod, tid, trygghet, ärliga och tillitsfulla relationer. Omskakande och oroande händelser, utmattning i brist på egen tid och sympati från andra var omständigheter som utlöste gråten. De närstående försökte göra det bästa möjliga för patienten genom att anpassa eller dölja gråten, allt för att underlätta bördan och skapa en positiv motvikt till lidande och sorg. Tolkningen av helheten (studie II); närståendes gråt kunde vara ett uttryck för att dela något tillsammans för gemenskap, tröst och stöd eller att söka sig till ensamhet för enskildhet och återhämtning.Sammanfattningsvis kan gråten ses som en copingstrategi eftersom den reducerar spänningar och skapar befrielse, upprätthåller balans, ger tröst, ny energi och tillfällen för enskildhet. Det är ett sätt att uttrycka lidande men på samma gång kräver gråten energi och ger känslor av skam.En viktig del i professionens arbete bör därför vara att tillåta gråten, lyssna, vara närvarande, uppmuntra uttryck av känslor men också ge utrymme för enskildhet. Läkaren, sjuksköterskan och andra i teamet kan lindra patientens och närståendes känslor av skam och sårbarhet genom att bekräfta, legitimera olika uttryck för gråt och därmed skapa en tolerant, säker och trygg omgivning.
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