| 1. |
- Strang, Susann, 1953, et al.
(author)
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Palliative care in COPD-web survey in Sweden highlights the current situation for a vulnerable group of patients.
- 2013
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In: Upsala journal of medical sciences. - : Uppsala Medical Society. - 2000-1967 .- 0300-9734. ; 118:3, s. 181-6
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Journal article (peer-reviewed)abstract
- Abstract Background. Chronic obstructive pulmonary disease (COPD) is a common cause of death. Despite the heavy symptom burden in late stages, these patients are relatively seldom referred to specialist palliative care. Methods. A web-based survey concerning medical and organizational aspects of palliative care in COPD was distributed to respiratory physicians in Sweden. There were 93 respondents included in the study. Results. Palliative care issues were regularly discussed with the patients according to a third of the respondents. About half of the respondents worked in settings where established routines for co-operation with palliative units were available at least to some extent. Less than half of the respondents (39%) were aware of current plans to develop palliative care, either as a co-operative effort or within the facility. Palliative care is focused on physical, psychological, social, and existential dimensions, and the proportions of respondents providing support within these dimensions, 'always' or 'often', were 83%, 36%, 32%, and 11%, respectively. Thus, to treat the physical dimensions was perceived as much more obvious than to address the other dimensions. Conclusions. The survey indicates that the priorities and resources for palliative care in COPD are insufficient in Sweden. The data, despite limitations, reveal a lack of established team-work with specialized palliative care units and actual plans for such co-operation.
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| 2. |
- Cavalli-Björkman, Nina, 1970-, et al.
(author)
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Equal cancer treatment regardless of education level and family support? : A qualitative study of oncologists’ decision-making
- 2012
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In: BMJ Open. - : BMJ. - 2044-6055. ; 2:4, s. e001248-
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Journal article (peer-reviewed)abstract
- Objective: Treatment gradients by socioeconomic status have been observed within cancer care in several countries. The objective of this study was to explore whether patients' educational level and social network influence oncologists' clinical decision-making. Design: Semi-structured interviews on factors considered when deciding on treatment for cancer patients. Interviews were transcribed and analysed using inductive qualitative content analysis. Setting: Oncologists in Swedish university-and non-university hospitals were interviewed in their respective places of work. Participants: Twenty Swedish clinical oncologists selected through maximum-variation sampling. Primary and secondary outcome measures: Elements which influence oncologists' decision-making process were explored with focus on educational level and patients' social support systems. Results: Oncologists consciously used less combination chemotherapy for patients living alone, fearing treatment toxicity. Highly educated patients were considered as well-read, demanding and sometimes difficult to reason with. Patients with higher education, those very keen to have treatment and persuasive relatives were considered as challenges for the oncologist. Having large groups of relatives in a room made doctors feel outnumbered. A desire to please patients and relatives was posed as the main reason for giving in to patients' demands, even when this resulted in treatment with limited efficacy. Conclusions: Oncologists tailor treatment for patients living alone to avoid harmful side-effects. Many find patients' demands difficult to handle and this may result in strong socioeconomic groups being over-treated.
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| 3. |
- Granstam Björneklett, Helena, et al.
(author)
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A randomised controlled trial of support group intervention after breast cancer treatment : Results on anxiety and depression
- 2012
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In: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 51:2, s. 198-207
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Journal article (peer-reviewed)abstract
- BackgroundPrevious studies have demonstrated that between 20 and 30% of women treated for breast cancer have measurable signs of anxiety and depression compared with 6% in a population of healthy women. Depression has been proposed as a predictive factor for recurrence and survival. The aim of the present study was to evaluate if psychosocial support intervention could influence anxiety and depression during the first year after diagnosis.Material and methodsNewly diagnosed breast cancer patients were randomised between April 2002 and November 2007 and stratified by adjuvant chemotherapy. Of 382 eligible patients, 191 + 191 patients were randomised to intervention group or control group, respectively. Control patients were subjected to standard follow-up routines. The Intervention group had support intervention at the Foundation Lustgarden Malardalen. The rehabilitation lasted one week on a residential basis followed by four days of follow-up two months later. We used the Swedish version of the HAD scale with a cut-off value greater than 10 for clinical symptoms of depression and anxiety.ResultsSupport group intervention lowered anxiety over time (p < 0.001) but depression was unaffected (p = 0.610).ConclusionThis prospective randomised trial of support group intervention in a large homogenous group of breast cancer women showed a statistically significant effect on lowering anxiety over time. No statistically significant effect of intervention could be seen on depression.
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| 4. |
- Granstam Björneklett, Helena, et al.
(author)
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A randomized controlled trial of a support group intervention on the quality of life and fatigue in women after primary treatment for early breast cancer
- 2012
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In: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 20:12, s. 3325-3334
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Journal article (peer-reviewed)abstract
- BACKGROUND:When diagnosed with breast cancer, most women's lives change as well as their perspectives on and appreciation of life. The aim of the present study was to evaluate whether psychosocial support intervention could influence health-related quality of life (HRQOL) and fatigue during the first year after diagnosis.MATERIAL AND METHODS:Of 382 patients with newly diagnosed breast cancer, 191 patients were randomized to an intervention group and 191 patients were randomized to a routine control group. The intervention group received support intervention that lasted 1 week on a residential basis, followed by 4 days of follow-up 2 months later. The support intervention included informative educational parts, relaxation training, mental visualization, and nonverbal communication. HRQOL was measured using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-BR23 questionnaires and fatigue with the Norwegian version of the fatigue scale at baseline and at 2, 6, and 12 months after intervention.RESULT:There was a time-dependent improvement in both functional and symptom scales between baseline and 12 months as measured by the EORTC QLQ-C30 and BR23 questionnaires and there was a decrease in fatigue between baseline and after 2 months with further improvement up to 12 months in both groups, but there were no differences between the intervention and control groups at any point in time.CONCLUSION:HRQOL improves and symptoms of fatigue decrease over time, but we could not see any additional effect from the rehabilitation program in this setting.
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| 5. |
- Granstam Björneklett, Helena, 1962-, et al.
(author)
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A randomized controlled trial of support group intervention after breast cancer treatment : Results on sick leave, health care utilization and health economy
- 2013
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In: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 52:1, s. 38-47
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Journal article (peer-reviewed)abstract
- BackgroundMore than 50% of breast cancer patients are diagnosed before the age of 65. Returning to work after treatment is, therefore, of interest for both the individual and society. The aim was to study the effect of support group intervention on sick leave and health care utilization in economic terms.Material and MethodsOf 382 patients with newly diagnosed breast cancer, 191 + 191 patients were randomized to an intervention group or to a routine control group respectively. The intervention group received support intervention on a residential basis for one week, followed by four days of follow-up two months later. The support intervention included informative-educational sections, relaxation training, mental visualization and non-verbal communication. Patients answered a questionnaire at baseline, 2, 6 and 12 months about sick leave and health care utilization.ResultThere was a trend towards longer sick leave and more health care utilization in the intervention group. The difference in total costs was statistically significantly higher in the intervention group after 12 months (p= 0.0036).Conclusion Costs to society were not reduced with intervention in its present form.
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| 6. |
- Granstam Björneklett, Helena, et al.
(author)
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Long-term follow-up of a randomized study of support group intervention in women with primary breast cancer
- 2013
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In: Journal of Psychosomatic Research. - : Elsevier BV. - 0022-3999 .- 1879-1360. ; 74:4, s. 346-353
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Journal article (peer-reviewed)abstract
- Background:Despite a fairly good prognosis, many breast-cancer patients suffer from symptoms such as anxiety, depression and fatigue, which may affect health-related quality of life and may persist for several years. The aim of the present study was to perform a long-term follow-up of a randomized study of support group intervention in women after primary breast cancer treatment.Materials and methods:Three hundred and eighty two women with primary breast cancer were randomized to support group intervention or control group, 181 in each group. Women in the intervention group participated in 1 week of intervention followed by 4 days of follow-up 2 months later. This is a long-term follow-up undertaken, in average, 6.5. years after randomization. Patients answered the questionnaires the European Organisation for Research and Treatment of Cancer, Quality of Life Questionnaire (EORTC QLQ-C30) and the Breast Cancer Module questionnaire (BR23), the Hospital Anxiety and Depression Scale (HAD) and the Norwegian version of the fatigue scale (FQ).Results: After adjusting for treatment with chemotherapy, age, marriage, education and children at home, there was a significant improvement in physical, mental and total fatigue (FQ), cognitive function, body image and future perspective (EORTC QLQ C30 and BR23) in the intervention group compared with controls. The proportion of women affected by high anxiety and depression scores were not significantly different between the groups.Conclusion:Support intervention significantly improved cognitive function, body image, future perspective and fatigue, compared with to the findings in the control group.
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| 7. |
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| 8. |
- Karlsson, Marit, et al.
(author)
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Dying cancer patients' own opinions on euthanasia : An expression of autonomy? A qualitative study.
- 2012
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In: Palliative Medicine. - London, UK : Sage Publications Ltd.. - 0269-2163 .- 1477-030X. ; 26:1, s. 34-42
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Journal article (peer-reviewed)abstract
- INTRODUCTION: Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons. METHOD: Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories. RESULTS: The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust. CONCLUSIONS: Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.
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| 9. |
- Karlsson, Marit, et al.
(author)
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Suffering and euthanasia : a qualitative study of dying cancer patients' perspectives.
- 2012
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In: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 20:5, s. 1065-1071
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Journal article (peer-reviewed)abstract
- PURPOSE: Although intolerable suffering is a core concept used to justify euthanasia, little is known about dying cancer patients' own interpretations and conclusions of suffering in relation to euthanasia. METHODS: Sixty-six patients with cancer in a palliative phase were selected through maximum-variation sampling, and in-depth interviews were conducted on suffering and euthanasia. The interviews were analyzed using qualitative content analysis with no predetermined categories. RESULTS: The analysis demonstrated patients' different perspectives on suffering in connection to their attitude to euthanasia. Those advocating euthanasia, though not for themselves at the time of the study, did so due to (1) perceptions of suffering as meaningless, (2) anticipatory fears of losses and multi-dimensional suffering, or (3) doubts over the possibility of receiving help to alleviate suffering. Those opposing euthanasia did so due to (1) perceptions of life, despite suffering, as being meaningful, (2) trust in bodily or psychological adaptation to reduce suffering, a phenomenon personally experienced by informants, and (3) by placing trust in the provision of help and support by healthcare services to reduce future suffering. CONCLUSIONS: Dying cancer patients draw varying conclusions from suffering: suffering can, but does not necessarily, lead to advocations of euthanasia. Patients experiencing meaning and trust, and who find strategies to handle suffering, oppose euthanasia. In contrast, patients with anticipatory fears of multi-dimensional meaningless suffering and with lack of belief in the continuing availability of help, advocate euthanasia. This indicates a need for healthcare staff to address issues of trust, meaning, and anticipatory fears.
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| 10. |
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| 11. |
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| 12. |
- Lundstrom, Staffan, et al.
(author)
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Together we can : experiences from 7 years of cross-sectional studies in a Swedish palliative care clinical research network
- 2010
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 24:3, s. 261-266
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Journal article (peer-reviewed)abstract
- During recent years, research networks and collaboratives focusing on palliative care research have been established both nationally and internationally resulting in several ongoing projects. In 2002, a clinician-based research network, the Palliative Care Research Network in Sweden (PANIS), was established to stimulate research and development of palliative care in Sweden. The growing network, which today includes 60 specialized palliative care units, has used a web-based survey generator to collect data on symptom prevalence, treatment traditions and important issues in palliative care. Eleven different studies involving almost 11,000 patients have been performed within the network including studies on prevalence of antitumoral treatment, the use of opioids, corticosteroids, blood transfusions, parenteral nutrition and prevalence of palliative sedation therapy in specialized palliative care. The working method of the research network is described, and demographic data from 9,298 patients in six cross-sectional studies are presented. Using a relatively simple research methodology, the network has succeeded in addressing key clinical questions and in this article we share experiences and challenges met during the journey.
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| 13. |
- Milberg, Anna, 1966-, et al.
(author)
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Protection against perceptions of powerlessness and helplessness during palliative care: The family members' perspective.
- 2011
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In: Palliative & Supportive Care. - Cambridge, UK : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 9:3, s. 251-262
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Journal article (peer-reviewed)abstract
- Objective:Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.Method:Both family members during ongoing APHC and family members 3-9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.Results:Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.Significance of results:The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.
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| 14. |
- Olsson, Louise
(author)
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Hopp hos döende patienter med cancer i palliativ hemsjukvård
- 2011
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Licentiate thesis (other academic/artistic)abstract
- Hope is meaningful and very important for people – even for people at the last days of their lives. Health professionals can sometimes describe hope in terms of hope for a cure, which may lead to feelings of hopelessness or empty hope for a patient with an incurable disease. In research, there is very little written about hope in the palliative home care context, even more so from the patient’s perspective. The aim of this project was to study how hope changes over time in cancer patients at the palliative phase, and to study the strategies used to cope with these changes. This was studied from the patients’ own perspective and in a home care context, but with the ambition of developing the results into a model or theory.Grounded Theory was the chosen research approach. Two sets of tape-recorded interviews were made with 11 patients in specialized palliative home care – a total of 20 interviews. The patients were also asked to write diaries about changes in their everyday feelings of hope within a 4-week period. Measurements of hope (HHI-S) and symptoms (ESAS) were also made at three occasions. Constant comparison of data was made during the analysis.The results showed that patients’ hope changed over time. Hope was described as a process involving a glimmering core of hope untouched by external circumstances (Study I). Hope was described in different processes, creation of a convinced hope, creation of simulated hope, collection and maintaining moments of hope and gradually extinct hope. The dying patient’s hope can be described as a gradual and successive adaptation process. Strategies for maintaining life were expressed to preserve the meaning in life, to communicate with others about life and death, to involve "fellow travelers" and to change focus. The strategy of preparing for death involved; taking responsibility for the future and seeing possibilities of living on even after death (Study II). The strategies were parallel to, and dependent on each other. It is important that health professionals understand the patient’s own strategies for maintaining life/hope, as well as the patient’s own preparations for death, so that hope is never taken away despite preparations at the end of life.In summary, hope can be interpreted as a changing process over time – a process that can change quickly, but is based on an inviolable core that is not easily moved by external circumstances. It is important that the health care personnel realize that patients simultaneously prepare for their deaths even as they try to maintain hope. Deeper understanding of what hope can mean for a patient can decrease the risk of hope being taken away during one’s final days.
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| 15. |
- Olsson, Louise, et al.
(author)
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Maintaining hope when close to death: insight from cancer patients in palliative home care
- 2010
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In: International Journal of Palliative Nursing. - London : Mark Allen group. - 1357-6321 .- 2052-286X. ; 16:12, s. 607-612
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Journal article (peer-reviewed)abstract
- This article reports the social and psychological processes that 11 cancer patients receiving palliative home care used to keep their hope alive. Method: The patients described their ways of dealing with hope in interviews and diaries, and it was from these accounts that the processes were extracted, using a grounded theory methodology. Results: Two main processes emerged: maintaining life and preparing for death. When the patients focused on maintaining life, they tried to preserve its meaning and to communicate with others about life and death. They found it helpful to shift their focus and to involve fellow 'travellers' in their journey. To prepare for death was to take responsibility for the future and to see possibilities of living on even after death. Conclusion: This paper revealed two parallel and interdependent processes used by patients in the palliative care phase to maintain hope and respond to living close to death.
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| 16. |
- Olsson, Louise, 1957-, et al.
(author)
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The Glimmering Embers : Experiences of hope among cancer patients in palliative home care
- 2011
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In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 9:1, s. 43-54
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Journal article (peer-reviewed)abstract
- The experience of hope among cancer patients in palliative care is important knowledge for health care providers, but research is sparse. The aim of this paper was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during six weeks throughout the last phase of their life and to assess their symptoms and hope status during six weeks throughout the last phase of their lives.Eleven adult patients with cancer participated in twenty interviews and completed seven diaries. The participants were recruited from two palliative care units in South-East of Sweden. The methods used were 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.
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| 17. |
- Papathanou, Maria, et al.
(author)
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The H3 receptor agonist immepip does not affect l-dopa-induced abnormal involuntary movements in 6-OHDA-lesioned rats
- 2014
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In: European Journal of Pharmacology. - : Elsevier BV. - 0014-2999 .- 1879-0712. ; 741, s. 304-310
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Journal article (peer-reviewed)abstract
- The treatment of dyskinesia in Parkinson׳s disease remains poor but H3 receptor agonists have been suggested as a novel pharmacological approach. We examined the effects of the H3 agonist, immepip, in 6-OHDA-lesioned rats exhibiting AIMs (abnormal involuntary movements), a rat analogue of dyskinesia, in response to l-dopa compared to the known anti-dyskinetic agents amantadine, MK-801 and 8-OHDPAT. We then attempted to extend these studies in to dyskinetic 1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine (MPTP) treated common marmosets.Amantadine, MK-801 and 8-OHDPAT all dose-dependently reduced l-dopa-induced axial, lingual and oral (ALO) AIMs in 6-OHDA-lesioned animals accompanied by a reduction in contralateral rotation with higher doses of amantadine and MK-801. By contrast, immepip had no effect on AIMs expression or contralateral rotation. In the MPTP-treated common marmoset exhibiting dyskinesia to l-dopa, immepip alone induced retching and in combination with l-dopa administered subcutaneously or orally induced the rapid onset of retching and vomiting which was not controlled by pretreatment with domperidone. Administration of the unrelated H3 agonist, imetit had the same effect. Despite causing negative side-effects, it appears that both agonists reduced the antiparkinsonian response to l-dopa resulting in reduced dyskinesia.H3 agonists appear unlikely candidates for the treatment of dyskinesia in PD based on lack of evidence of efficacy and potential adverse effects.
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| 18. |
- Sandgren, Anna, 1970-, et al.
(author)
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Symptoms, care needs and diagnosis in palliative cancer patients in acute care hospitals: A 5-year follow-up survey
- 2010
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In: Acta Oncologica. - : Informa Healthcare. - 0284-186X .- 1651-226X. ; 49:4, s. 460-466(7)
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Journal article (peer-reviewed)abstract
- INTRODUCTION: Palliative cancer care in acute hospitals is scarcely studied. We therefore described and compared symptoms, care needs and types of cancer sites in 2002 compared to 2007 and analysed the relationships between these factors. METHODS: The study was population-based with a cross-sectional design and was carried out in medical, surgical and oncology wards in two acute care hospitals with no advanced palliative home care service. In 2002, 82 one-day-inventories were done (1 352 patients) compared to 142 one-day-inventories in 2007 (2 972 patients). Symptoms, care needs and cancer site were registered according to a questionnaire. Multiple logistic regression models were used to analyse associations between symptoms, care needs and cancer site. RESULTS: The proportion of palliative cancer patients had decreased during a five year period (14% vs. 11%, p<0.01). The patients were older in 2007 (74 vs. 70 years, p<0.001) and had more symptoms and care needs per patient (2.6 vs. 1.6, p<0.001). The most common symptoms were pain and deterioration and the most common cancer sites were prostate and colorectal cancer in both samples. Associations between symptoms, care needs and cancer site were mostly weak. Deterioration was associated with colorectal cancer, whereas pain was not associated with any specific cancer site. In haematological malignancies there was a high occurrence of infections and a high need of blood transfusions and infusions. Stomach/oesophagus cancers were significantly associated with nausea, nutritional problems and need of infusions while unknown primary malignancies were associated with abdominal surgery and infusions. DISCUSSION: Although we do not know all the causes for hospitalization, this study indicates that more focus should be on the symptoms instead of the specific cancer diagnosis. The findings also indicate that many palliative cancer patients' problems would be suitable for advanced palliative home care instead of acute hospital care.
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| 19. |
- Seiger Cronfalk, Berit, et al.
(author)
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Soft tissue massage : early intervention for relatives whose family members died in palliative cancer care
- 2010
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 19:7-8, s. 1040-1048
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Journal article (peer-reviewed)abstract
- Aim and objectives. This paper explores how bereaved relatives experienced soft tissue massage during the first four months after the death of a family member who was in palliative cancer care.Background. Death of a close family member or friend is recognised as being an emotional and existential turning point in life. Previous studies emphasise need for various support strategies to assist relatives while they are grieving.Design. Qualitative design.Method. Eighteen bereaved relatives (11 women and seven men) received soft tissue massage (25 minutes, hand or foot) once a week for eight weeks. In-depth interviews were conducted after the end of the eight-week periods. Interviews were analysed using a qualitative descriptive content analysis method.Results. Soft tissue massage proved to be helpful and to generate feelings of consolation in the first four months of grieving. The main findings were organised into four categories: (1) a helping hand at the right time, (2) something to rely on, (3) moments of rest and (4) moments of retaining energy. The categories were then conceptualised into this theme: feelings of consolation and help in learning to restructure everyday life.Conclusions. Soft tissue massage was experienced as a commendable source of consolation support during the grieving process. An assumption is that massage facilitates a transition toward rebuilding identity, but more studies in this area are needed.Relevance to clinical practice. Soft tissue massage appears to be a worthy, early, grieving-process support option for bereaved family members whose relatives are in palliative care.
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