Symptoms at stroke onset as described by patients: a qualitative study.

BACKGROUND: Stroke is a common and severe disease that requires prompt care. Symptom expressions as one-sided weakness and speech difficulties are common and included in public stroke campaigns. For some patients stroke can present with subtle and less common symptoms, difficult to interpret. The symptom severity assessed by the National Institutes of Health Stroke Scale has decreased, and symptoms at onset may have changed. Therefore, we aimed to investigate how patients describe their symptoms at the onset of a first-time stroke. METHODS: The study used a qualitative descriptive design and conventional content analysis. Data were collected through recorded interviews with 27 patients aged 18 years and older hospitalised with a first-time stroke between October 2018 and April 2020. Data were analysed on a manifest level. RESULTS: Symptoms at stroke onset were presented in two themes: Altered Reality and Discomfort and Changed Body Functions and described in five categories. Various types of symptoms were found. All symptoms were perceived as sudden, persistent, and never experienced before and this appear as a "red thread" in the result. Regardless of symptom expressions, no specific symptom was described as more severe than another. CONCLUSIONS: Stroke symptoms were described with a variety of expressions. Many described complex symptoms not typical of stroke, which can make it difficult to recognise the symptoms as a stroke and delay medical care. Public stroke campaigns should emphasize the importance of seeking medical care at the slightest suspicion of stroke and could be designed to help achieve this.

[Rehabilitation of stroke in a ¼chain of care« perspective]. / Strokerehabilitering ur ett vårdkedjeperspektiv.

Rehabilitation is a key aspect of the treatment of stroke patients, both acute and in later phases. The patients' needs varies between individuals and over time. Several skills and methods and different professionals working together in teams, as well as coordination along the entire chain of care, are required in order to meet those different needs. Early supported discharge, ESD, is recommended for patients with mild to moderate stroke. Stroke is a chronic disease requiring lifelong structured follow-up focusing not only on medical treatment but also on lifestyle, mental and physical well-being and activity and participation.

Oral health plays second fiddle in palliative care: an interview study with registered nurses in home healthcare.

BACKGROUND: Oral health is crucial to the experience of well-being, and symptoms from the mouth are common at the end of life. Palliative care aims to identify and treat symptoms early to avoid unnecessary suffering and is thus an important part of nursing in home healthcare. The aim of this study was to illustrate the professional reflections of registered nurses about oral health amongst patients in palliative care, who are being cared for in a home healthcare setting. RESULTS: The results showed oral health in end-of-life care, to be an area marked by responsibility and ethical considerations. This was seen in all four partly overlapping themes that emerged through the analysis: Oral health is easily overlooked in palliative care, Oral health is everybody's but in reality nobody's responsibility, Patient integrity can be an obstacle for oral health, and Focus on oral health is urgently needed. The mouth is often not included as part of the daily basic care routine, by the registered nurses and the home healthcare staff, until the patient is near end of life. Moreover, neither does the patient tell about symptoms from the mouth. The interpreted whole indicates that the registered nurses had a bad conscience about not doing what they are actually responsible for and ought to do. CONCLUSION: The oral health of patients at the end of life risks being forgotten or falling between the cracks, due to the nurses' scattered tasks and unclear delimitations between their, and other professionals' responsibilities. The responsibilities of registered nurses are also ethically demanding, since their intent to respect the patient's integrity could mean that in some cases the patients does not allow them to help with oral health. To reduce the risk that oral health is overlooked, clearer demarcation and guidelines on the division of responsibilities are required. Routines that clearly implement early and recurring oral health assessments in home healthcare as well as continuing education updates on oral health and oral care are also needed.

Integrity at end of life in the intensive care unit: a qualitative study of nurses' views.

BACKGROUND: Integrity is a core value for delivering ethical health care. However, there is a lack of precision in defining what integrity is and how nurses understand it. In the setting of nurses caring for critically ill and dying patients in intensive care units (ICUs), integrity has not received much attention. Therefore, the aim of this study was to explore how nurses perceive and maintain the integrity of patients during end-of-life care in the ICU setting. METHODS: This study had a qualitative descriptive design. Data were collected using individual semi-structured interviews with 16 intensive care nurses working at ICUs in four Swedish hospitals. The data were analysed by applying qualitative content analysis. RESULTS: Five overall categories were explored: seeing the unique individual; sensitive to patient vulnerability; observant of patients' physical and mental sphere; perceptive of patients' religion and culture; and being respectful during patient encounters. Many nurses found it difficult to define integrity and to explain what respecting integrity entails in the daily care of dying patients. They often used notions associated with respect and patient-centred attitudes, such as listening and being sensitive or by trying to describe good care. Integrity was nonetheless seen as a central value for their clinical work and a precondition for ethical nursing practice. Some nurses were concerned about patient integrity, which is at risk of being "wiped out" due to the patient's illness/injury, unfamiliarity with the ICU environment and utter dependence on others for care. Protecting patients from harm and reducing patient vulnerability were also seen as important and a way to maintain the integrity of patients. CONCLUSIONS: The study results show that even though integrity is a fundamental ethical concept and a core value in nursing, ethical codes and guidelines are not always helpful in clinical situations in the end-of-life care of ICU patients. Hence, opportunities must regularly be made available for ICU nurses to reflect on and discuss ethical issues in terms of their decision-making and behaviour.

Self-rated health over the first five years after stroke.

BACKGROUND: Self-rated health (SRH) focuses on the patient's own perception, and represents an important patient-reported outcome. The aim was to investigate SRH one to 5 years after stroke, follow the development over time and search for factors associated with SRH. METHODS: Consecutive stroke patients admitted to Stroke Units at the Skaraborg Hospital, Sweden were included 2007-2009 (n = 2190). Patient-reported outcomes were collected annually over 5 years using a postal questionnaire. SRH was assessed by the question about general health from SF-36. Factors associated with SRH were investigated by multiple logistic regression analysis. RESULTS: Response-rate was > 90% at all time points. Overall, 40.2, 41.9, 40.7, 45.0 and 46.3% of the patients reported good SRH, 1 to 5 years after stroke. Performance in activities of daily living (ADL) was strongly associated with good SRH; 49.8 and 14.7% after 1 year in independent and dependent survivors respectively, p < 0.001. In independent survivors 1 year after stroke, good SRH was positively associated with female sex (OR = 2.0; p = < 0,001), physical activity (OR = 2.14; p = < 0,001), car driving (OR = 2.25; p = < 0,001), and negatively associated with age (OR = 0.99; p = < 0,001), pain (OR = 0.49; p = < 0,001), depression (OR = 0.30; p = < 0,001), and self-perceived unmet care needs (OR = 0.39; p = < 0,001). In dependent survivors, depression (OR = 0.23; p = < 0,001) and age (OR = 0.96; p = < 0,05), were negatively associated with good SRH 1 year after stroke. Similar patterns were observed throughout the follow-up. CONCLUSION: The proportion stroke survivors reporting their health as good is slightly increasing over time. After stroke, SRH is associated with pain, depression, ability to perform activities and self-perceived unmet care needs, indicating that efforts to support stroke survivors in the chronic phase after stroke should concentrate on targeting these factors.

Dignity at stake: Caring for persons with impaired autonomy.

Dignity, usually considered an essential ethical value in healthcare, is a relatively complex, multifaceted concept. However, healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for persons with impaired autonomy. This article focuses on two concepts of dignity, human dignity and dignity of identity, and aims to analyse how these concepts can be applied in the care for persons with impaired autonomy and in furthering the practice of respect and protection from harm. Three vignettes were designed to illustrate typical caring situations involving patients with mild to severely impaired autonomy, including patients with cognitive impairments. In situations like these, there is a risk of the patient's dignity being disrespected and violated. The vignettes were then analysed with respect to the two concepts of dignity to find out whether this approach can illuminate what is at stake in these situations and to provide an understanding of which measures could safeguard the dignity of these patients. The analysis showed that there are profound ethical challenges in the daily care of persons with impaired autonomy. We suggest that these two concepts of human dignity could help guide healthcare professionals to develop practical skills in person-centred, ethically grounded care, where the patient's wishes and needs are the starting point.

Nursing students' attitudes toward care of dying patients: A pre- and post-palliative course study.

BACKGROUND: Many nursing students are not prepared to encounter death and care for patients who are at the end of life as newly educated nurses. The Frommelt Attitude Toward Care of Dying Scale (FATCOD) has been used to assess nursing students' attitudes during their education and changes have been noted. OBJECTIVE: To examine nursing students' attitudes towards care of dying patients before and after a course in palliative care. DESIGN: A descriptive study with a pre and post design. SETTINGS & PARTICIPANTS: Nursing students (n = 73) enrolled in a mandatory palliative course in the nursing programme at a Swedish university. METHODS: Data were collected before and after a palliative care course using FATCOD and qualitative open-ended questions. Data from FATCOD were analysed using descriptive and analytical statistics. The open-ended questions were analysed with qualitative content analysis. RESULTS: The students' mean scores showed a statistically significant change toward a more positive attitude toward care of dying. Students with the lowest pre-course scores showed the highest mean change. The qualitative analysis showed that the students had gained additional knowledge, deepened understanding, and increased feelings of security through the course. CONCLUSIONS: A course in palliative care could help to change nursing students' attitudes towards care of patients who are dying and their relatives, in a positive direction. A course in palliative care is suggested to be mandatory in nursing education, and in addition to theoretical lectures include learning activities such as reflection in small groups, simulation training and taking care of the dead body.

Changes in functional outcome over five years after stroke.

OBJECTIVES: Data on the long-term time course of poststroke functional outcome is limited. We investigated changes in functional outcome over 5 years after stroke in a hospital based cohort. MATERIALS AND METHODS: Consecutive patients who were independent in activities of daily living (ADL) and admitted to a Stroke Unit at Skaraborg Hospital, Sweden for a first acute stroke from 2007 to 2009 (n = 1,421) were followed-up after 3 months and thereafter annually over 5 years using a postal questionnaire. Clinical variables at acute stroke and 3 months post stroke were obtained from the Swedish Stroke Register. ADL dependency was defined as dependence in dressing, toileting or indoor mobility. RESULTS: The proportions of survivors who reported ADL dependency remained stable throughout follow-up (19%-22%). However, among survivors who were ADL independent at 3 months, about 3% deteriorated to dependency each year. Deterioration was predicted by age (HR 1.11; 95% CI 1.08-1.13), diabetes (HR 1.65; 95% CI 1.12-2.44), NIHSS score (HR 1.07; 95% CI 1.04-1.10), and self-perceived unmet care needs one year post stroke (HR 2.01; 95% CI 1.44-2.81). Transitions from ADL dependency to independence occurred mainly during the first year post stroke. Improvement was negatively predicted by living alone before stroke (HR 0.41 95% CI 0.19-0.91), NIHSS score (HR 0.90; 95% CI 0.86-0.95) and ischemic stroke (vs. hemorrhagic stroke), HR 0.39; 95% CI 0.17-0.89. CONCLUSION: Transitions between ADL independence and dependency occur up to 5 years after stroke. Some of the factors predicting these transitions are potentially modifiable.

Communication, the Key in Creating Dignified Encounters in Unexpected Sudden Death - With Stroke as Example.

AIM: The aim of this study was to illuminate the communication and its meaning in unexpected sudden death with stroke as example, as experienced by stroke team members and next of kin. SUBJECT AND METHODS: The study has a qualitative design. Secondary analysis of data from four previous interview studies with stroke team members; physicians, registered nurses, and enrolled nurses from the stroke units (SU) and next of kin of patients who had died due to acute stroke during hospital stay were utilized. RESULTS: Communication is revealed as the foundation for care and caring with the overarching theme foundation for dignified encounters in care built-up by six themes illuminating the meaning of communication in unexpected sudden death by stroke. CONCLUSION: Communication shown as the foundation for dignified encounters in care as experienced by stroke team members and next of kin enables the patient to come forth as a unique person and uphold absolute dignity in care. Acknowledging the next of kin's familiarity with the severely ill patient will contribute to personalizing the patient and in this way be the ground for a person centeredness in care despite the patients' inability to defend their own interests. Through knowledge about the patient as a person, the foundation for dignified care is given, expressed through respect for the patient's will and desires and derived through conversations between carers and next of kin.

Reasoning about truth-telling in end-of-life care of patients with acute stroke.

BACKGROUND: Ethical problems are a universal phenomenon but rarely researched concerning patients dying from acute stroke. These patients often have a reduced consciousness from stroke onset and thereby lack ability to convey their needs and could be described as 'incompetent' decision makers regarding their own care. OBJECTIVE: The aim of the study was to deepen the understanding of stroke team members' reasoning about truth-telling in end-of-life care due to acute stroke. RESEARCH DESIGN: Qualitative study based on individual interviews utilizing combined deductive and inductive content analysis. Participants and research context: A total of 15 stroke team members working in stroke units of two associated county hospitals in western Sweden participated. Ethical considerations: The study was approved by the Regional Ethics Review Board, Gothenburg, Sweden. FINDINGS: The main findings were the team members' dynamic movement between the categories 'Truth above all' and 'Hide truth to protect'. Honesty was highly valued and considered as a reason for always telling the truth, with the argument of truth as common morality. However, the carers also argued for hiding the truth for different reasons such as not adding extra burden in the sorrow, awaiting a timely moment and not being a messenger of bad news. Withholding truth could both be seen as a way of protecting themselves from difficult conversations and to protect others. DISCUSSION: The results indicate that there are various barriers for truthfulness. Interpreted from a virtue of ethics perspective, withholding of truth might also be seen as an expression of sound judgement to put the patient's best interest first. CONCLUSION: The carers may need support in the form of supervision to be given space to reflect on their experience and thereby promote ethically justified care. Here, the multi-professional team can be of great value and contribute through inter-professional sharing of knowledge.

Nursing students' attendance at learning activities in relation to attainment and passing courses: A prospective quantitative study.

BACKGROUND: Students' motivation and ways of engaging in their schoolwork are important for their performance, including passing exams. Attendance at learning activities has also been argued to be of major importance, although no causal relationship with passing exams has been established in nursing education. OBJECTIVES: The aim of this study was to describe the impact of attendance at nonmandatory learning activities on attainment, in terms of passing or failing of exams, in nursing education courses including both mandatory and non-mandatory activities. DESIGN: A prospective quantitative design. SETTING: The nursing education programme at a Swedish university. PARTICIPANTS: Nursing students (n=361) from two courses and four classes within the nursing programme. METHODS: Attendance was registered at every non-mandatory teaching activity by asking the students to note their attendance on a list. Data such as sex, age, and whether the students had passed the exam were also collected for each course and each semester separately. RESULTS: Increased participation was associated with an increasing proportion of students passing the exam. The chance of passing the exam increased by 13% for every additional learning occasion attended. Logistic regression showed an OR of 5.4 for an attendance of 100%. CONCLUSIONS: An increase in attendance gave a higher proportion of exam passes. Encouraging students to attend non-mandatory learning activities could be of value, and potentially contribute to an increased graduation rate for nursing students.

Strategies for handling ethical problems in end of life care: obstacles and possibilities.

BACKGROUND: In end of life care, ethical problems often come to the fore. Little research is performed on ways or strategies for handling those problems and even less on obstacles to and possibilities of using such strategies. A previous study illuminated stroke team members' experiences of ethical problems and how the teams managed the situation when caring for patients faced with sudden and unexpected death from stroke. These findings have been further explored in this study. OBJECTIVE: The aim of the study was to illuminate obstacles and possibilities perceived by stroke team members in using strategies for handling ethical problems when caring for patients afflicted by sudden and unexpected death caused by stroke. RESEARCH DESIGN: A qualitative method with combined deductive and inductive content analysis was utilized. PARTICIPANTS AND RESEARCH CONTEXT: Data were collected through individual interviews with 15 stroke team members working in stroke units of two associated county hospitals in western Sweden. ETHICAL CONSIDERATIONS: The study was approved by the Regional Ethics Review Board, Gothenburg, Sweden. Permission was also obtained from the director of each stroke unit. FINDINGS: All the studied strategies for handling of ethical problems were found to have both obstacles and possibilities. Uncertainty is shown as a major obstacle and unanimity as a possibility in the use of the strategies. The findings also illuminate the value of the concept "the patient's best interests" as a starting point for the carers' ethical reasoning. CONCLUSION: The concept "the patient's best interests" used as a starting point for ethical reasoning among the carers is not explicitly defined yet, which might make this value difficult to use both as a universal concept and as an argument for decisions. Carers therefore need to strengthen their argumentation and reflect on and use ethically grounded arguments and defined ethical values like dignity in their clinical work and decisions.

The narrative structure as a way to gain insight into peoples' experiences: one methodological approach.

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

Next of kin's experiences of sudden and unexpected death from stroke - a study of narratives.

BACKGROUND: Death always evokes feelings in those close to the afflicted person. When death comes suddenly the time for preparation is minimal and the next of kin have to cope with the situation despite their own sorrow. The suddenness is found to be stressful for the next of kin and communication both with healthcare professionals and information about what has happened has been found helpful. The aim of this study was to illuminate the experiences of next of kin from the sudden and unexpected death of a relative from acute stroke. METHODS: Data was collected over a 12-month period in 2009-2010. Twelve next of kin of patients cared for in stroke units who died suddenly and unexpectedly from stroke were interviewed using a narrative method. The narratives were analyzed using narrative thematic analysis. RESULTS: Three themes emerged showing facets of next of kin's experiences of a relative's sudden and unexpected death from stroke: Divided feelings about the sudden and unexpected death; Perception of time and directed attention when keeping vigil; Contradictions and arbitrary memories when searching for understanding. CONCLUSIONS: To have to live in the aftermath of severe stroke is absolute horror in people's imagination and death is seen as the lesser of two evils. The sudden and unexpected death totally pervades the next of kin's life, directs their attention to the dying person and even causes them to forget themselves and their own needs, and leads to difficulties in information intake. It is a challenge for the healthcare professionals to be able to identify the individual needs of the next of kin in this situation.

Strategies for handling ethical problems in sudden and unexpected death.

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

The unexpected force of acute stroke leading to patients' sudden death as described by nurses.

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

Ethical problems: In the face of sudden and unexpected death.

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