| 1. |
- Skulason, Bragi, et al.
(författare)
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Identifying obstacles to participation in a questionnaire survey on widowers' grief
- 2010
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Ingår i: BMC Palliative Care. - Stockholm : Karolinska Institutet, Dept of Public Health Sciences. - 1472-684X.
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim of this study was to determine if Icelandic widowers might foresee obstacles to responding to a questionnaire on bereavement. Also, we sought to compare the proportion of men reporting obstacles in a telephone interview to the actual response rate in the questionnaire survey. Methods: The study was part of a nation-wide survey of widowers who lost their wives in 1999, 2000, and 2001. This included all widowers born in Iceland 1924-1969 (aged 30-75 years) who were alive, and residing in Iceland at the time of the study. A telephone poll was conducted prior to sending out a questionnaire to determine if the widowers would be interested in responding, or if they could see obstacles, which could affect their willingness to respond to a subsequent questionnaire survey. The telephone poll was repeated five years later with a random sample of the original study base to determine if views initially expressed towards the questionnaire survey, had changed over time. Results: Of the 357 eligible widowers, 11 had died prior to the first telephone interview, yielding a study population of 346 widowers. Of those, 296 (86%) were reachable and all of these (100%) were willing to participate in the telephone survey. Of them, 55% identified obstacles to participation in the questionnaire survey. Men under 60 years were less likely to identify obstacles. Years from loss (second through fourth years) were not associated with reporting obstacles to participation. The response rate in the epidemiological questionnaire survey following the telephone interview was 62% (216/346). Of those who did identify obstacles 23%, did not did not identify any particular obstacle, but 33% stated that "they felt bad" or that it would be "a painful experience" or that they felt "uncomfortable" talking about their grief. About 18% stated their grief was "a private matter"; 6% stated that they did not want to be "stuck with their grief"; 9% said that it was "too late" to talk about their grief or that they "wanted to look towards their future". Additionally, 11% stated "other reasons", including responses like: "it's too early to talk about it", and "I have started another relationship - don't want complications." Conclusions: The willingness to participate in the telephone interview was high and indicates a strong interest in the subject. Also, exposure to the study appeared to increase willingness to participate, since many men who initially could see obstacles to participation, actually participated in the epidemiological questionnaire survey. However, approximately one third of the men who initially identified obstacles to participation remained negative toward participation throughout the study period.
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| 2. |
- Hoff, Lena, et al.
(författare)
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In the shadow of bad news - views of patients with acute leukaemia, myeloma or lung cancer about information, from diagnosis to cure or death
- 2007
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Ingår i: BMC Palliative Care. - 1472-684X. ; 6:Article nr. 1
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Tidskriftsartikel (refereegranskat)abstract
- Many studies have been published about giving and receiving bad messages. However, only a few of them have followed the patients all the way through a disease as is done in this study. Many studies have been written about patients' coping strategies. In this study we will keep within the bounds of coping through information only. The aim of the study is to investigate patients' views of information during the trajectory of their disease, whether their reactions differ from each other and whether they differ in different phases of the disease.
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| 3. |
- Hoff, Lena, et al.
(författare)
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Information from physicians and retention of information by patients - obstacles to the awareness of patients of progressing disease when life is near the end
- 2008
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Ingår i: BMC Palliative Care. - 1472-684X. ; 7
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Tidskriftsartikel (refereegranskat)abstract
- Discrepancies between the information that patients have received and the patients' awareness of their condition have frequently been observed in literature and given a number of different explanations. The chief contribution of this study is that by following patients over time it is possible not only to notice any changes in the patients' knowledge or awareness of their disease, but also to investigate the interview material for possible reasons for those changes. Since the study is based on two different groups of patients it will also be possible to notice if the category of disease matters for patients' awareness of their condition.
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| 4. |
- Thulesius, Hans, et al.
(författare)
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De-tabooing dying control - a grounded theory study.
- 2013
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Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 12, s. 1-8
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Dying is inescapable yet remains a neglected issue in modern health care. The research question in this study was "what is going on in the field of dying today?" What emerged was to eventually present a grounded theory of control of dying focusing specifically on how people react in relation to issues about euthanasia and physician-assisted suicide (PAS).METHODS: Classic grounded theory was used to analyze interviews with 55 laypersons and health care professionals in North America and Europe, surveys on attitudes to PAS among physicians and the Swedish general public, and scientific literature, North American discussion forum websites, and news sites.RESULTS: Open awareness of the nature and timing of a patient's death became common in health care during the 1960s in the Western world. Open dying awareness contexts can be seen as the start of a weakening of a taboo towards controlled dying called de-tabooing. The growth of the hospice movement and palliative care, but also the legalization of euthanasia and PAS in the Benelux countries, and PAS in Montana, Oregon and Washington further represents de-tabooing dying control. An attitude positioning between the taboo of dying control and a growing taboo against questioning patient autonomy and self-determination called de-paternalizing is another aspect of de-tabooing. When confronted with a taboo, people first react emotionally based on "gut feelings" - emotional positioning. This is followed by reasoning and label wrestling using euphemisms and dysphemisms - reflective positioning. Rarely is de-tabooing unconditional but enabled by stipulated positioning as in soft laws (palliative care guidelines) and hard laws (euthanasia/PAS legislation). From a global perspective three shapes of dying control emerge. First, suboptimal palliative care in closed awareness contexts seen in Asian, Islamic and Latin cultures, called closed dying. Second, palliative care and sedation therapy, but not euthanasia or PAS, is seen in Europe and North America, called open dying with reversible medical control. Third, palliative care, sedation therapy, and PAS or euthanasia occurs together in the Benelux countries, Oregon, Washington and Montana, called open dying with irreversible medical control.CONCLUSIONS: De-tabooing dying control is an assumed secular process starting with open awareness contexts of dying half a century ago, and continuing with the growth of the palliative care movement and later euthanasia and PAS legislation.
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| 5. |
- Karlsson, Magdalena, et al.
(författare)
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Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study
- 2014
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Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 13
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Tidskriftsartikel (refereegranskat)abstract
- Background: Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment. Methods: This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach. Results: This study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people's lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves - a new experience that lays the foundation for development of knowledge, personal learning and growth. Conclusions: People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.
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| 6. |
- Skulason, B., et al.
(författare)
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Death talk: gender differences in talking about one's own impending death
- 2014
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Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 13:8
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Tidskriftsartikel (refereegranskat)abstract
- Background: According to common practice based on a generally agreed interpretation of Icelandic law on the rights of patients, health care professionals cannot discuss prognosis and treatment with a patient's family without that patient's consent. This limitation poses ethical problems, because research has shown that, in the absence of insight and communication regarding a patient's impending death, patient's significant others may subsequently experience long-term psychological distress. It is also reportedly important for most dying patients to know that health care personnel are comfortable with talking about death and dying. There is only very limited information concerning gender differences regarding death talk in terminal care patients. Methods: This is a retrospective analysis of detailed prospective "field notes" from chaplain interviews of all patients aged 30-75 years receiving palliative care and/or with DNR (do not resuscitate) written on their charts who requested an interview with a hospital chaplain during a period of 3 years. After all study patients had died, these notes were analyzed to assess the prevalence of patient-initiated discussions regarding their own impending death and whether non-provocative evocation-type interventions had facilitated such communication. Results: During the 3-year study period, 195 interviews (114 men, 81 women) were conducted. According to the field notes, 80% of women and 30% of men initiated death talk within the planned 30-minute interviews. After evoking interventions, 59% (67/114) of men and 91% (74/81) of women engaged in death talk. Even with these interventions, at the end of the first interview gender differences were still statistically significant (p = 0.001). By the end of the second interview gender difference was less, but still statistically significant (p = 0.001). Conclusions: Gender differences in terminal care communication may be radically reduced by using simple evocation methods that are relatively unpretentious, but require considerable clinical training. Men in terminal care are more reluctant than women to enter into discussion regarding their own impending death in clinical settings. Intervention based on non-provocative evocation methods may increase death talk in both genders, the relative increase being higher for men.
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| 7. |
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| 8. |
- Karlsson, Magdalena, et al.
(författare)
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Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment : A life-world phenomenological study
- 2014
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Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 13:28
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundMany people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment.MethodsThis study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach.ResultsThis study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people’s lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves –a new experience that lays the foundation for development of knowledge, personal learning and growth.ConclusionsPeople diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.
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