Multiple stigma among first-generation immigrants with epilepsy in Sweden.

OBJECTIVES: To investigate the meaning of stigma among first-generation immigrants with epilepsy in Sweden. METHODS: Data were collected by individual face-to-face interviews with 25 first-generation immigrants with epilepsy from 18 different countries. Interviews were recorded, transcribed verbatim, and analyzed systematically using a hermeneutic approach. RESULTS: Multiple aspects of stigma were associated with epilepsy, immigration, and socioeconomic deprivation. The main theme "It is a fight to be appreciated as a person and member of society" illuminated the meaning of stigma in the struggle with a negative self-image and strategies to build self-confidence. The seizure-related fears were amplified by language barriers and a lack of knowledge of the healthcare system that obstructed access to health care. Few close relatives nearby or misconceptions of epilepsy in the family resulted in a lack of support. The stigma of being an immigrant and of socioeconomic deprivation resulted in feelings of being unvalued by the society in addition to feelings of being unvalued in relationships and at work because of epilepsy. The social isolation experienced as a result of immigration was increased due to the presence of perceived stigma due to epilepsy which led people to stay at home in order to conceal their epilepsy. At the same time, to inform others about their epilepsy could reduce seizure-related fears. Employment appeared as a symbol of being a capable person and helped participants gain self-confidence. CONCLUSIONS: Barriers to access health care and the exposure to multiple stigma can result in increased seizure-related fears, social isolation, and a lack of support for immigrants with epilepsy. In the context of epilepsy and immigration, stigma was intricately connected to how people perceived themselves as capable and contributing members of society. To reduce the negative influence of stigma, employment appeared vital to build self-confidence and break social isolation. Investigating the patient's experience of stigma may provide healthcare professionals with valuable information on the need for support and priorities in epilepsy management. Public efforts to increase knowledge about epilepsy also among first-generation immigrants would be valuable.

To make and execute decisions throughout life: A person-centred model that facilitates self-determination in residential care, developed through participatory research.

AIM: The aim of the study was to develop a model that facilitates self-determination in residential care. BACKGROUND: The right to decide on one's own life is self-evident to most adult persons. Nevertheless, dependency on others and the routine-based care that sometimes is provided in residential care, limit the residents' possibilities of self-determination. METHODS: The study had a participatory research design using appreciative inquiry in focus group discussions with staff, residents, and care managers. The research process and the model were audited by two expert groups: a scientific reference group and a dementia-specialist reference group. A theoretical framework of relational autonomy and person-centred care was also used. RESULTS: By combining practical and theoretical knowledge, the model "To make and execute decisions throughout life" was developed. The core message of "In my way, at my pace, with the help of you" was reinforced by the categories "See me as a competent person", "Show me professional consideration", "Meet me in a trustful relationship", "Give me opportunity to a meaningful and safe day", "Support me in being independent", "Let me have power over my own life", and "Help me to plan my end-of-life care". CONCLUSION: The model "To make and execute decisions throughout life" provides a base for a person-centred approach to care. By reflecting on the core message and the different categories in the model, staff can be inspired to see their own contribution to the residents' self-determination and find ways to facilitate it despite the many obstacles.

Residents' and family members' perceptions of care quality and self-determination in palliative phase in residential care.

OBJECTIVE: Dependency on others can compromise self-determination for older persons in the palliative phase in residential care. Family members can support the residents' self-determination but may also jeopardize it. Quality of care (QoC) is linked to respecting the autonomy of the residents and providing opportunities to participate in decision-making. The aim of the study was to provide knowledge about residents' and family members' perceptions of QoC and self-determination and to detect possible differences between their experiences. METHOD: This cross-sectional study used an abbreviated version of the questionnaire, Quality from the Patients' Perspective, with additional items about decision-making. Wilcoxon's signed rank test was used to analyze the perception of QoC and to detect differences between residents' and family members' perceptions. RESULT: QoC was perceived as lower than preferred in the majority of items and there was a high level of agreement between residents and family members. Lowest mean values in QoC were found in: support when feeling lonely; support when feeling worry, anxiety or fear; and staff's time to talk to the residents. Decision-making in everyday life and in life-changing situations showed that neither residents nor family members trusted staff to know about the residents' preferences. SIGNIFICANCE OF RESULTS: Broad improvements are needed, especially in psychosocial care. Several of the negative outcomes on QoC and self-determination seem to derive from a focus on practical tasks and the lack of trustful relationships between residents and staff. An early implementation of palliative care, with a focus on what brings quality to each resident's life, could facilitate QoC and self-determination, in both everyday life and at the end of life.

Is blogging a new form of communication in palliative health care? A qualitative research study.

AIM: To illuminate experiences of living with life-threatening diseases as described in blogs and the experience of blogging about these matters. METHODS: A secondary analysis of 21 blogs was performed. RESULTS: It was difficult for bloggers to accept what they perceived to be the unacceptable aspects of having an life-threatening disease. They searched for hope and acceptance, and tried to manage their life. They felt strengthened by supportive encounters with health professionals, relatives, friends, and from their blogging. However, they also felt that they were set aside in relation to both health professionals and relatives. CONCLUSION: These patients appreciated being able to express their feelings and received support from their readers. Even if patient blogs can be used in health care, research and education, there is a lack of research studies that have examined the benefits of using blogging for any of these purposes.

Factors influencing attitude toward care of dying patients in first-year nursing students.

AIM: To describe Swedish first-year undergraduate nursing students' attitudes toward care of dying patients. Possible influences such as age, earlier care experiences, care education, experiences of meeting dying patients and place of birth were investigated. METHOD: The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) was used in six universities. Descriptive statistics and regression analysis were used. RESULTS: Some 371 students (67.3%) reported overall positive attitude toward caring for dying patients (total mean FATCOD 119.5, SD 10.6) early in their first semester. Older students, students with both earlier care experience and earlier education, those with experience of meeting a dying person, and students born in Sweden reported the highest scores, a more positive attitude. CONCLUSION: Age, earlier care experience and education, experiences of meeting a dying person and place of birth seems to affect students' attitudes toward care of the dying and need to be considered among nursing educators.

Struggling to find meaning in life among spouses of people with ALS.

OBJECTIVE: The aim of this study was to illuminate experiences of finding meaning in life among spouses of people with amyotrophic lateral sclerosis. METHOD: Thirteen interviews were analyzed with qualitative content analysis. RESULTS: The spouses were struggling for meaning at the end of a dark tunnel. They felt limited and isolated in their proximity to death. They lived imprisoned lives, felt lonely, considered life to be unfair and incomplete, and mourned the loss of their future. However, they found meaning despite the proximity of death through cherishing their own lives, fellowship, accepting the present, and believing in meaning after the partner's death. SIGNIFICANCE OF RESULTS: Meaning in life strengthened spouses' well-being and ability to find pleasure in a difficult situation. It also strengthened their will to live after the partner's death. Limitations and isolations were strong predictors of what could impair their well-being and the possibility of finding meaning after the partner's death. Spouses need individual support throughout the disease process and after the partner's death, to give them the strength to find meaning in life and prioritize what is important for them. Paying attention to what might prevent them from finding meaning could make it easier to help them in their situation. Providing joint support to the patient and spouse might also help them to see each other's situation, come together, and help each other.

Development of an existential support training program for healthcare professionals.

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

Communication about existential issues with patients close to death--nurses' reflections on content, process and meaning.

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

Experience of guilt and strategies for coping with guilt in patients with severe COPD: a qualitative interview study.

Guilt is associated with an increased level of mood disturbance and a poorer quality of life. The aim of this study was to explore how patients with severe COPD view and experience guilt and the ways in which they cope with this guilt. A total of 31 COPD patients were interviewed about their perceptions and experiences of guilt. Qualitative content analysis was used to examine the interviews. In the descriptive (manifest) analysis, the categories "not feeling personal guilt" and "experiencing guilt" emerged; in the interpretative (latent) analysis, various strategies for dealing with guilt were identified--for example, acceptance or blaming others. Relatively few patients reported that they felt guilt on a conscious level, but those who did expressed anguish, and remorse before God; some felt blamed by others. It is important that healthcare providers acknowledge the guilt that their patients express, since guilt may have adverse effects on the patients' overall health.

Death and caring for dying patients: exploring first-year nursing students' descriptive experiences.

AIM: To describe first-year nursing students' experiences of witnessing death and providing end-of-life care. METHODS: This study is part of a larger longitudinal project. Interviews (n=17) were conducted with nursing students at the end of their first year of education. To analyse the interviews (lived-experience descriptions), a thematic analysis, 'a search for meaning' ( Van Manen, 1997 ) was applied. RESULTS: The results are presented within the framework of four separate themes: (1) The thought of death is more frightening than the actual experience, (2) Daring to approach the dying patient and offering something of oneself, (3) The experience of not sufficing in the face of death and (4) Being confronted with one's own feelings. CONCLUSION: Nursing students require continuous support and opportunity to reflect and discuss their experiences about caring for dying patients and confronting death throughout the entirety of their education. In addition, teachers and clinical supervisors need to give support using reflective practice to help students to develop confidence in their capacity for caring for dying patients.

Swedish nursing students' reasoning about emotionally demanding issues in caring for dying patients.

AIM: To describe nursing students' reasoning about emotionally demanding questions concerning the care of dying patients. METHODS: The Frommelt Attitude Toward Care of the Dying (FATCOD) Scale was completed by students at the beginning of their education, and there was great variation in the responses to five items. At a follow-up measurement in the second year, an open-ended question, 'How did you reason when completing this question?', was added to each of the these five items. Qualitative content analysis was used to analyse the responses. RESULTS: Of 140 students who completed the FATCOD, 111 provided free-text responses. The analysis of these responses revealed three themes: death perceptions, the students' understanding of their current situation, and the nurse's responsibility. CONCLUSION: This study provides useful information on students' reasoning about emotionally demanding questions relating to the care of dying patients. Such knowledge is valuable in helping students to overcome their fear and fulfil their expectations concerning their future proficiency.

Experience of anxiety among patients with severe COPD: A qualitative, in-depth interview study.

OBJECTIVES: Anxiety often arises in conjunction with dyspnoea in patients with severe COPD. Considering the provoking symptomatology and the high mortality rate for COPD, it is reasonable to believe that these conditions trigger death-related and existential anxiety. Although anxiety causes considerable distress and reduces quality of life, people's experience of anxiety has been studied relatively little. The aim of this study was to explore severely ill COPD patients' experience of anxiety and their strategies to alleviate anxiety. METHODS: This qualitative, in-depth interview study explored perceptions of anxiety and the alleviation strategies that are adopted. Interviews were analyzed using a thematic content analysis approach, involving interpretive coding and identification of themes. People suffering from COPD (stage III or IV) were recruited from a pulmonary outpatient clinic in the west of Sweden. Purposive sampling was used, and thirty-one (31) patients were included. RESULTS: Most of the patients had experienced anxiety associated with COPD. Analyses revealed three major themes, death anxiety, life anxiety, and counterweights to anxiety. Death anxiety included fear of suffocation, awareness of death, fear of dying and separation anxiety. Life anxiety included fear of living and fear of the future. Counterweights to anxiety concerned coping with suffocation, avoiding strategy, and a sense of joy that defied their vulnerable situation. SIGNIFICANCE OF RESULTS: The majority of patients experienced anxiety, which limited their lives. Although the patients experienced both life anxiety and death anxiety, they were able to cope with the situation and find a defiant joy to some extent.

Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients.

AIM AND OBJECTIVES: To illuminate how people with amyotrophic lateral sclerosis (ALS) create meaning despite the disease. BACKGROUND: Coping strategies for living with ALS have already been investigated. However, there is a lack of studies on how people with the disease find meaning and what helps and hinders this. DESIGN: A qualitative descriptive study. METHODS: Fourteen individual interviews were performed in Spring 2007. The interviews were analysed by qualitative content analysis. RESULTS: Two themes emerged to illuminate the complex life situation of the interviewees: experiences of anxiety over life and death and finding meaning despite the illness. It became clear that the uncertain journey towards death was more frightened than death itself. Despite the incurable disease, which brought feelings of life and death anxiety, physical loss, unfairness, guilt, shame and existential loneliness, they also found meaning in life, which strengthened their will to live. Meaning was found through their family and friends, the act of giving and receiving help, the feeling of having a life of their own and accepting the present. The perspective of life was transferred to a deeper view where material things and quarrels were no longer in focus. CONCLUSIONS: Despite the disease, the participants found meaning in life which strengthened their will to live. RELEVANCE TO CLINICAL PRACTICE: The balance between anxiety over life and death and finding meaning in life indicates the importance of support through the whole disease process. Both disease-specific problems and existential questions must be tackled. Nurses and other professionals need to be aware of the patients' existential qualms. There is a need to focus on what is important for the individual, and emphasis must be placed on where that person can find meaning.

Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin.

AIM AND OBJECTIVES: This study aims to illuminate factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in patients and next of kin. Fourteen patients and 13 next of kin were interviewed. BACKGROUND: The whole family becomes affected when a person gets the disease. Therefore, it is important to identify strategies for managing the life situation among both patients and their next of kin. DESIGN: A qualitative descriptive study. METHOD: This study based on individual interviews was performed in spring 2007. The interviews were subjected to qualitative content analysis. RESULTS: The results indicate constant fluctuation between opportunities and limitations in individual ability - of patients and family members - to manage the life situation. Both patients and next of kin devised strategies to manage their situations through acceptance, living in the present and perceiving real presence and support from family, friends and authorities. Dysfunctional relationships with family members, friends, or authorities reduced the manageability of the situation. Furthermore, patients experienced difficulties managing their situations when forced into passivity and increased dependence. Next of kin experienced decreased ability to manage because of burden, lack of own time and feelings of being controlled. CONCLUSION: The fluctuations in manageability and the similarities and differences between the pairs, indicate the importance of support, both for the individual and the family. RELEVANCE TO CLINICAL PRACTICE: Fluctuations in manageability and similarities and differences between approaches to managing the situation suggest a need for input from caregivers, for the whole family. Family members need support and time for their own needs and also the opportunity to increase their awareness and understanding of the needs of other family members. This study may give health personnel insight into how to help families devise strategies to manage a complex life situation.

Quality of life, anxiety and depression in ALS patients and their next of kin.

AIM AND OBJECTIVES: The aims were to study health-related quality of life, anxiety and depression in patients with amyotrophic lateral sclerosis and their next of kin and to compare these results with a subset of the general Swedish population. Thirty-five pairs of patients with amyotrophic lateral sclerosis and their next of kin were studied. BACKGROUND: Life changes in many ways when a person is diagnosed with amyotrophic lateral sclerosis. Comparison between patients, next of kin and the general population are needed to get a wider understanding of their quality of life, anxiety and depression. DESIGN: A descriptive study. METHODS: All participants were studied with the SF-36 and the Hospital Anxiety and Depression Scale. Patients' physical function was assessed by the amyotrophic lateral sclerosis Functional Rating Scale-Revised and the Norris scale. RESULTS: A correlation was found in both the mental component summary in SF-36 and in anxiety between the pairs of patients and their next of kin, while no correlation was found in the physical component summary or depression. These results were not related to the patients' physical function. Both patients and their next of kin had some poorer ratings in SF-36 and in anxiety and depression than the general Swedish population. Gender or age did not affect the estimates in any of the scales. CONCLUSIONS: The results indicate that both the patient and the next of kin are affected by the disease independent of physical disability. In most pairs of patient and next of kin, the mental component summary and anxiety were affected to a similar extent. RELEVANCE TO CLINICAL PRACTICE: The results emphasise the need for medical and nursing support to both the patient and the next of kin soon after the diagnosis and during the course of the disease.

Trustful communication in the medical encounter: Perspectives of immigrated people with epilepsy.

BACKGROUND: Foreign-born people with epilepsy carry two mutually independent risk factors for poor health. While epilepsy increases the need for trust and clear communication, minority status presents additional barriers in communication, causing misconceptions, inadequate treatment and increased suffering. OBJECTIVES: This study aimed to explore experiences of communication in the medical encounter from the perspectives of foreign-born people with epilepsy. METHODS: A qualitative approach was applied. Twenty semi-structured in-depth interviews were conducted, recorded, transcribed verbatim and analyzed using manifest and latent content analysis. RESULTS: Within the main theme, "Trustful communication in unpredictable terms of life," three subthemes appeared: "Social struggle overshadowing the epilepsy condition"; "Reliable health consultations as a key to feeling safe" and "Addressing 'the real problem' in the medical encounter." A reduced social network due to migration, together with fears related to epilepsy, seems to increase the need for immediate access to health consultations and the need to be listened to. Patients' narratives shed light on multiple social, medical and psychological events that may present reasons for the lack of medical adherence or missed booked appointments. DISCUSSION: A respectful approach, listening and confirming the normalcy of epilepsy events seem fundamental for trustful communication in the context of epilepsy, regardless of a patient's culture or country of origin.

Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin.

OBJECTIVE: The aim of this study was to examine health-related quality of life (HRQoL), individual QoL, anxiety and depression in patients with amyotrophic lateral sclerosis (ALS) and their next of kin in relation to patients' physical function over time. METHODS: 35 patients and their next of kin were studied using the Short Form-36 Health Survey (SF-36), Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), and Hospital Anxiety and Depression Scale (HADS) and patients also by the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale every fourth to sixth month, one to four times. RESULTS: Changes were found over time in both patients and their next of kin in the SF-36 but not in the SEIQoL-DW or HADS. Patients rated worse than their next of kin in the SF-36 physical subscales and next of kin rated worse than the patients in the global QoL score in SEIQoL-DW. Health, hobbies, and total relations were important areas in the SEIQoL-DW among all participants, but some important areas also differed between the patients and their next of kin. In most important areas among the pairs, the next of kin estimated their functioning/satisfaction worse than patients estimated their functioning/satisfaction. SIGNIFICANCE OF RESULTS: There were few changes over time in the QoL among the participants. Although most of the estimates in patients and their next of kin were equal, there were also some differences. These results emphasize the importance of support for both patients and their next of kin and that support ought to be given on both individual bases and together in pairs. The SEIQoL-DW might give signposts in the care through the course of the disease about what should be focused on to increase satisfaction of the important areas of life and might help the person to find coping strategies to handle his or her life situation.

Health care staff's opinions about existential issues among patients with cancer.

OBJECTIVE: The objective of this study was to explore health care staff's opinions about what existential issues are important to patients with cancer and staff's responsibility when existential issues are raised by patients. METHOD: Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff's opinions about patients' important existential questions and, second, about health care staff's responsibility when existential issues are raised by the patient. The interviews were tape-recorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories. RESULTS: Four categories and 11 subcategories emerged from the first question. The first category, "life and death," was based on joy of living and thoughts of dying. The second category "meaning," consisted of acceptance, reevaluation, hope, and faith. The third category, "freedom of choice," consisted of responsibility and integrity, and the fourth and last category, "relationships and solitude," consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff's responsibility, "to achieve an encounter," which was based on the subcategories time and space, attitudes, and invitation and confirmation. SIGNIFICANCE OF RESULTS: The strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.

Balancing between maintaining and overriding the self: Staff experiences of residents' self-determination in the palliative phases.

AIMS AND OBJECTIVES: To investigate, from the staff perspective, residents' self-determination during the palliative phase while in residential care. BACKGROUND: Residential care facilities have a high prevalence of palliative care needs and dependency. The ability of residents to make and execute decisions may be hindered by their cognitive and physical limitations. There is a need to investigate how residents' self-determination is affected during the palliative phase in residential care. METHOD: Twenty individual, semi-structured interviews with Registered Nurses, enrolled nurses and physicians working in residential care facilities were analysed with inductive qualitative content analysis. FINDINGS: The overarching main theme, Balancing between maintaining and overriding the residents' self, illuminated how strengthened self-determination affected the residents' self in a positive way, while undermined self-determination affected the residents' self in a negative way. Factors that strengthened self-determination were facilitating the residents' own decision making, acting in accordance with the residents' wishes and acting as the residents' spokesperson when necessary. Factors that undermined self-determination were residents' dependence, others setting the terms, for example, being controlled by routines, insufficient communication, for example, lacking end-of-life care planning and others crossing the boundaries of one's personal sphere. CONCLUSION: There are serious threats to residents' self-determination but also strategies to cope with these threats. Physical and cognitive frailty and other people setting the terms hinder both making and executing decisions. However, staff can strengthen residents' self-determination and assist in the presentation of residents' self by adopting a relational view of autonomy and by taking personal preconditions into account. There is a need to come to terms with the lack of end-of-life care planning and to give residents a voice in these matters. Implementing a palliative approach early in the illness trajectory could facilitate communication about end-of-life care both within the group of staff and among the residents, relatives and staff. IMPLICATIONS FOR PRACTICE: To maintain residents' self-determination and protect their self, staff need knowledge about residents' life stories and personal preconditions. This in turn requires continuity of care and spending time with residents to build relationships. Implementing an early palliative approach with a focus on factors that promote quality of life for each resident might facilitate communication and enhance decision making both in everyday life and in planning for end-of-life care.