The experience of tiredness linked to poor sleep in patients on peritoneal dialysis was explored using the qualitative method phenomenology. Eight women and six men in southeast Sweden were interviewed. The patients' descriptions were characterized by a circular structure "circling around in tiredness." This study illustrates the problems of tiredness and illuminates the need for healthcare professionals to assess the impact of tiredness and highlight the need for strategies to improve the patient's situation.
To describe what life is like as a woman living with coeliac disease.
The therapy for coeliac disease is a gluten-free diet, and if sufferers keep strictly to this, it is suggested that they will stay well. However, previous studies point out that people who are treated for coeliac disease, particularly women, experience various kinds of inconvenience in relation to having coeliac disease and to being treated with gluten-free diet.
A qualitative research design was chosen.
A phenomenological approach as devised by Giorgi was used. Tape-recorded qualitative interviews with a total of 15 women who were being treated for coeliac disease were conducted in 2008 in Sweden.
The results demonstrated that coeliac disease can influence women's lives in different ways. The general structure of being a woman with coeliac disease was described as a striving towards a normalised lifeworld. Three conditions necessary to achieve a normalised life were described, namely being secure, being in control and being seen and included.
Understanding factors affecting the ability to live with coeliac disease as normally as possible can help caregivers, and others, to support these women in their aims.
Nurses should help women to adopt facilitating thoughts in relation to the disease and, in so doing, help them to select appropriate coping strategies.
To date there has been a paucity of research examining whether a course in palliative care influences the clinical work. Therefore a half-day course was started for different professionals.
The aims of this study were to quantitatively and qualitatively explore professionals' experience of the usefulness and importance of such a course.
An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times.
Data was collected in Sweden through structured and open-ended questions (n=355) and in focus group discussions (n=40).
The majority of participants were allied professionals (86%). Course evaluation immediately after the intervention showed high scores. At three months, 78% of the 86 participants who had cared for a dying patient since the course claimed that the course had been useful in their work. In addition, there were improvements regarding symptom management (37%), support to family members (36%), more frequent break point conversations (31%), and improved cooperation in the teams (26%). The qualitative analysis showed that the course made participants start to compare their own working experiences with the new knowledge. When returning to work, the participants feel strengthened by the the newly acquired knowledge, but the will to improve the care also led to frustration, as some of the participants described that they wanted to change routines in the care of the dying, but felt hindered.
The course was appreciated and useful in the professionals' work, but it also created problems.
Although stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke.
To study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer.
This study is a retrospective, comparative registry study.
A retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI.
Compared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to end-of-life care and of their family members being offered bereavement follow-up.
The results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary.
Cites: Health Aff (Millwood). 2010 Aug;29(8):1489-9520679652
In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on "nondecisions" about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had "problems holding to the decision." The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was "communication barriers," a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified.
The aim of this study was to explore the experiences and preferences of terminally ill cancer patients regarding truth telling in the communication of poor prognoses.
We recorded and transcribed interviews with 45 patients who knew their cancer was terminal, and analyzed their responses hermeneutically.
Patients identified three different modes of truth: (1) the absolute objective truth that they are dying; (2) the partial truth about their condition including some facts but not all of the details; and (3) the desired truth, originating in the patient's own beliefs about a healthy or better life. Coping strategies were related to patients' preferred mode of truth: (1) facing the truth in order to take action; (2) facing some parts of the truth in order to maintain hope; and (3) hovering between facing and avoiding the truth. In their struggle for existential survival, patients used different coping strategies, changing from one to another depending upon the circumstances.
Varying use of different coping strategies impacts on patient preferences concerning communication about bad news with their doctors. Truth-telling entails more than merely providing information related to the forthcoming death. It also concerns how physicians or other healthcare staff can support the patient's existential survival by fine-tuning the communication of "truth" according to the individuals' preferences.
The experience of hope among cancer patients in palliative care is important information for healthcare providers, but research on the subject is sparse. The aim of this article was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during 6 weeks throughout the last phase of their life, and to assess their symptoms and hope status during 6 weeks throughout the last phase of their lives.
Eleven adult patients with cancer participated in 20 interviews and completed seven diaries. The participants were recruited from two palliative care units in the southeast of Sweden. The method used was Grounded Theory (GT), and analysis was based on the constant comparative method.
The core category, glimmering embers, was generated from four processes: (1) The creation of "convinced" hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of "simulated hope," including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to "seize the day" and hold on to moments of joy and pleasure; and (4) "Gradually extinct" hope, characterized by a lack of energy and a sense of time running out.
The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.
Despite living with a gluten-free diet, Swedish women with celiac disease report a higher rate of gastrointestinal symptoms than women without the disease. This study was designed to assess the impact of active patient education on gastrointestinal symptoms in women with a gluten-free diet. A total of 106 Swedish women, aged 20 years or older, with celiac disease on a gluten-free diet for a minimum of 5 years took part in a randomized controlled trial. The intervention group (n = 54) underwent a 10-session educational program, "Celiac School," based on problem-based learning. Controls (n = 52) were sent information regarding celiac disease at home. The outcome measure was gastrointestinal symptoms at 10 weeks and 6 months after intervention, assessed with the Gastrointestinal Symptom Rating Scale. After 10 weeks of "Celiac School," the participating women reported significant improvements that remained 6 months later (p = .029). The controls did not improve significantly. A comparison of the development of scores, from baseline to 10 weeks, could not demonstrate a significant difference in the overall index between the 2 groups but showed a significant improvement concerning 1 of its components, namely the index reflecting Abdominal Pain (p = .007). Intervention methods should be refined to reach an even more pronounced effect.
Constipation is a common and well-studied symptom in palliative care. Most previous studies have focused on the frequency and management of constipation. The current study aimed to investigate the lived experience of constipation among cancer patients in palliative hospital-based home care. Eleven cancer patients admitted to a hospital-based home care unit in Sweden who had experienced constipation participated in this study. Semi-structured interviews were conducted and a qualitative, phenomenological approach was used. Three themes emerged: bodily suffering; mental preoccupation and a reminder of death; and avoidance and social isolation. The experience of constipation was described as an extensive complete person-experience that must be prevented. To prevent unnecessary suffering nurses need to be proactive in the assessment of constipation.
The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups.