| 1. |
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| 2. |
- Friedrichsen, Maria, 1966-, et al.
(författare)
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Assistant nurses' experiences of thirst and ethical dilemmas in dying patients in specialized palliative care — A qualitative study
- 2023
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Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 79:11, s. 4292-4303
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Tidskriftsartikel (refereegranskat)abstract
- AimsTo describe assistant nurses' experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units.DesignA qualitative, reflexive thematic design with an inductive analysis was used.MethodsData were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR).ResultsTwo main themes were found in this study. (1) 'A world of practice for thirst relief' where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals.ConclusionThirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient's record. There is a need for nurses to take the lead in changing nursing practice regarding thirst.Patient or Public ContributionNo patient or public contribution.ImpactIn palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patient's fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life.Reporting MethodThe study was guided by the SRQR.What does this Article Contribute to the Wider Global Clinical Community?Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.
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| 3. |
- Milberg, Anna, et al.
(författare)
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What is a “secure base” when death is approaching? A study applying attachment theory to adult patients’ and family members’ experiences of palliative home care
- 2012
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Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 21:8, s. 886-895
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Tidskriftsartikel (refereegranskat)abstract
- ObjectiveAttachment theory has received much interest lately in relation to how adults cope with stress and severe illness. The aim of this study was using the experiences of patients and family members to explore palliative home care as a ‘secure base’ (a central concept within the theory).MethodsTwelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed with deductive qualitative content analysis.ResultsInformants expressed the relevance of sensing security during palliative home care because death and dying were threats that contributed to vulnerability. Palliative home care could foster a feeling of security and provide a secure base. This was facilitated when informants had trust in staff (e.g. due to availability and competence in providing symptom relief), felt recognised as individuals and welcomed to contact the team in times of needs. Being comfortable, informed and having an everyday life also contributed to a perception of palliative home care as a secure base. Family members stressed the importance of being relieved from responsibilities that were too heavy. The underlying meanings of experiencing palliative home care as a secure base involved gaining a sense of control and of inner peace, perceiving that despite a demanding and changed life situation, one could continue partially being oneself and having something to hope for, even if this no longer concerned cure for the ill person.ConclusionsImportant aspects of palliative home care as providing a secure base were identified and these have implications for clinical practice. Copyright © 2011 John Wiley & Sons, Ltd.
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| 4. |
- Drewes, A. M., et al.
(författare)
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Definition, diagnosis and treatment strategies for opioid-induced bowel dysfunction-Recommendations of the Nordic Working Group
- 2016
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Ingår i: Scandinavian Journal of Pain. - : Walter de Gruyter GmbH. - 1877-8860 .- 1877-8879. ; 11, s. 111-122
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Tidskriftsartikel (refereegranskat)abstract
- Background and aims: Opioid-induced bowel dysfunction (OIBD) is an increasing problem due to the common use of opioids for pain worldwide. It manifests with different symptoms, such as dry mouth, gastro-oesophageal reflux, vomiting, bloating, abdominal pain, anorexia, hard stools, constipation and incomplete evacuation. Opioid-induced constipation (OIC) is one of its many symptoms and probably the most prevalent. The current review describes the pathophysiology, clinical implications and treatment of OIBD. Methods: The Nordic Working Group was formed to provide input for Scandinavian specialists in multiple, relevant areas. Seven main topics with associated statements were defined. The working plan provided a structured format for systematic reviews and included instructions on how to evaluate the level of evidence according to the GRADE guidelines. The quality of evidence supporting the different statements was rated as high, moderate or low. At a second meeting, the group discussed and voted on each section with recommendations (weak and strong) for the statements. Results: The literature review supported the fact that opioid receptors are expressed throughout the gastrointestinal tract. When blocked by exogenous opioids, there are changes in motility, secretion and absorption of fluids, and sphincter function that are reflected in clinical symptoms. The group supported a recent consensus statement for OIC, which takes into account the change in bowel habits for at least one week rather than focusing on the frequency of bowel movements. Many patients with pain receive opioid therapy and concomitant constipation is associated with increased morbidity and utilization of healthcare resources. Opioid treatment for acute postoperative pain will prolong the postoperative ileus and should also be considered in this context. There are no available tools to assess OIBD, but many rating scales have been developed to assess constipation, and a few specifically address OIC. A clinical treatment strategy for OIBD/OIC was proposed and presented in a flowchart. First-line treatment of OIC is conventional laxatives, lifestyle changes, tapering the opioid dosage and alternative analgesics. Whilst opioid rotation may also improve symptoms, these remain unalleviated in a substantial proportion of patients. Should conventional treatment fail, mechanism-based treatment with opioid antagonists should be considered, and they show advantages over laxatives. It should not be overlooked that many reasons for constipation other than OIBD exist, which should be taken into consideration in the individual patient. Conclusion and implications: It is the belief of this Nordic Working Group that increased awareness of adverse effects and OIBD, particularly OIC, will lead to better pain treatment in patients on opioid therapy. Subsequently, optimised therapy will improve quality of life and, from a socio-economic perspective, may also reduce costs associated with hospitalisation, sick leave and early retirement in these patients.
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| 5. |
- Eriksson, Heléne, 1964-
(författare)
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End of Life Stroke Care : perspectives of health-care professionals and family members
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- IntroductionEven though medical improvements have reduced the mortality rates for patients afflicted by stroke, mortality during the first few days at hospital is significant. Today, there is an increasing recognition that the principles of palliative and supportive care are important components of meeting the needs of patients severely afflicted by stroke even in acute settings. However, there is limited knowledge about which factors have an impact on the end-of-life care (EoLC) for these patients or about how these last days of life are experienced from the family members’ perspective.AimThe overall aim of this thesis was to describe the EoLC of patients severely afflicted by stroke and to identify factors impacting upon EoLC for the patients and their family members in Sweden out of various contexts and methods.Design and MethodsThis thesis is based upon four papers employing qualitative, quantitative and mixed-method designs.Paper I is a qualitative study based on focus-group interviews with 41 health-care professionals (HCPs) in different professions related to stroke care at three stroke units. The aim was to study ethical dilemmas, different approaches and what consequences they had among health HCPs; the data was analysed using content analysis. The result inspired the design and conduct of the following studies.Paper II is a quantitative comparative study based on a retrospectively registered questionnaire from the Swedish Registry of Palliative Care (SRPC). Patients dying of stroke (n =1626) were compared with patients dying from cancer (n=1626), according to symptoms, symptom management and communication with the patient and family members during the last week of life. Data was statistically calculated using OR.Paper III is a mixed-method study employing a sequential explanatory design. In the first, quantitative, part, 995 stroke patients who died in hospital were compared with 631 stroke patients who died at nursing homes, according to symptoms, symptom management and communication with the patient and family members during the last week of life. The quantitative data was statistically calculated using OR and the qualitative data was analysed using content analysis. Nine significant differences drawn from the quantitative results regarding care were chosen to be discussed by twelve nurses working in stroke units.Paper IV is a qualitative interview study with the aim to study the family member descriptions of the trajectory from admission to the hospital until their loved one died. A semi-structured interview guide was used, and data was analysed using thematic analyses.ResultsFactors that had an impact on EoLC were consequences related to the difficulties around decision-making about withholding or withdrawing life-sustaining treatment. Non-decisions or not holding to the decision generated communication barriers causing obstacles in inter-professional collaboration and ethical dilemmas within the team (Study I). The absence of a mutual approach to care resulted in underprovided palliation, undignified medical treatment and ambiguity in care, generating feelings of distrust among the family members. The results described in Study I of underprovided palliation were further investigated in Study II. The differences in knowledge about whether symptoms were present or not in patients afflicted by stroke compared to patients with cancer were significant. For example, the HCPs in the stroke group did not know if pain was present nine times more frequently than in the cancer group. These differences in knowledge about whether symptoms were present of not were also identified in Study III. Here, HCPs at the nursing home more often had knowledge about whether a symptom was present in patients dying of stroke or not, compared to HCPs at hospitals. This study also identifies differences in the presence of the symptoms being compared and whether the patient’s suffering was fully relieved. The nurses working at stroke units explained that these differences were a consequence of the stroke unit’s aim (saving lives), no previous relationship to the patient and ambiguity in the evaluation of symptoms. The patient’s altered levels of consciousness increased the difficulties in evaluation. In addition, the hospital setting’s aim increased the risk of prolonged treatment, for example nutrition supplied during the last day of life, and underprovided palliation of for example, pain compared to nursing homes. In Study IV, family members were seeking trust through mutual collaboration and creating relationships with the HCPs. If the family did not feel that their search for trust was taken care of, it generated feelings of distrust allied with anxiety and memories of failing to do the best for their loved one at in the end of life. During the trajectory at the hospital, family members were “seeking trust in chaos”, “seeking clarity when deciding about living or dying” and finally they were “seeking trust in care as a final act of love”.Conclusions:The results of this thesis suggest that the absence of a coherent approach contributes to developing ethical dilemmas within the HCPs. The ambiguity in care had an impact on the quality on EoLC, with an increased risk of unnecessary suffering and questionable symptom management. The prevailing culture at acute-care hospitals affected the HCPs’ attitudes towards EoLC, with attention being predominantly on life-sustaining treatments. There is an increasing recognition of the need for improvement in the PC approach at acute-care hospitals in order to create equal quality of care during end of life, irrespective of the place of death for patients dying of stroke. Furthermore, family members need to feel trust, which is achieved through relationships and collaboration with HCPs. In the striving to accomplish a wholly compensatory care of quality during the trajectory, this thesis can be a source of knowledge and guidance for nurses and for teams at the stroke unit.
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| 6. |
- Friedrichsen, Maria, 1966-, et al.
(författare)
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Experiences of truth disclosure in terminally ill cancer patients in palliative home care
- 2011
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Ingår i: Palliative & Supportive Care. - New York : Cambridge university press. - 1478-9515 .- 1478-9523. ; 9:2, s. 173-180
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Tidskriftsartikel (refereegranskat)abstract
- Objective: 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. Method: We recorded and transcribed interviews with 45 patients who knew their cancer was terminal, and analyzed their responses hermeneutically. Results: 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. Significance of results: 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.
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| 7. |
- Friedrichsen, Maria, 1966-, et al.
(författare)
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Prolonged grievers : A qualitative evaluation of a support group intervention
- 2014
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 12:4, s. 299-308
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The aim of this project was to study prolonged grievers psychosocial processes and experience during participation in a group intervention and 6–8 weeks after discontinuation. The intervention in this study was a group therapy with the aim of getting in contact with their pain and loss and confronting and working with this loss.Methods: Data was collected by using diaries and tape-recorded interviews, analyzed with grounded theory. The participants were 11 females between the ages of 33 and 71.Results: The main process that was found in the qualitative data was: Ambivalence when struggling and learning through work and rest towards a balance. Sub-processes were: To share and be confirmed in the group through sense of cohesion; To dare/venture to discover problems and solutions; To react when you get emotionally involved, and to compare and discover.Significance of results: This study gives insight into prolonged grievers' thinking, which is valuable knowledge. Rather than assuming that all individuals suffering from prolonged grief need the same treatment, we suggest that there should be a range of different therapies.
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| 8. |
- Hjelmfors, Lisa, et al.
(författare)
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Communication about Prognosis and End-of-Life in Heart Failure Care and Experiences Using a Heart Failure Question Prompt List
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:8
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Tidskriftsartikel (refereegranskat)abstract
- Background: To further advance the use of a heart-failure-specific question prompt list (HF-QPL) for communication about prognosis and end-of-life care, knowledge about such communication and the perceptions and experiences of professionals is needed. Objectives: 1. to describe health care professionals' perceptions of communication about prognosis and end-of-life in heart failure (HF) care, and 2. to describe their experiences of using a HF-QPL. Design: A qualitative design that analyzed material from written assignments of nurses and physicians who were using a HF-QPL while participating in a communication course. Methods: Fifteen health care professionals from different regions in the south of Sweden were included. The data were collected from course assignments on 1. their reflection on the suitable timepoint for talking about prognosis for the first time, 2. their reflection on the HF-QPL, and 3. their experiences of using the HF-QPL in clinical practice. Data were analyzed using thematic analysis. Results: Five overarching themes were identified. The first theme was awareness of professional role responsibilities that described the recognition of different responsibilities in these conversations within the HF team. The second theme described the importance of being optimally prepared, and the third that confidence and skills are required to use the HF-QPL. The fourth theme described the HF-QPL as a bridge in the communication between professionals, patients, and family members. The fifth theme identified challenges using the HF-QPL in HF care. Conclusions: Using a HF-QPL in HF care has the potential to start conversation and facilitate discussion about the HF trajectory.
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| 9. |
- Hjelmfors, Lisa, et al.
(författare)
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Optimizing of a question prompt list to improve communication about the heart failure trajectory in patients, families, and health care professionals
- 2020
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Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 19:1, s. 1-14
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Tidskriftsartikel (refereegranskat)abstract
- Background The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals. Methods Data were collected in a two-round Delphi survey and a cross-sectional survey, including patients with heart failure, their family members, and health care professionals working in heart failure care in Sweden and the Netherlands. Acceptability for and demand of the Question Prompt List were assessed. Results A total of 96 patients, 63 family members and 26 health care professionals participated in the study. Regarding acceptability, most of the original questions were found to be relevant by the participants for inclusion in the Question Prompt List but some cultural differences exist, which resulted in two versions of the list: a Swedish version including 33 questions and a Dutch version including 38 questions. Concerning demand, participants reported that they were interested in discussing the questions in the revised Question Prompt List with a physician or a nurse. Few patients and family members reported that they were worried by the questions in the Question Prompt List and hence did not want to discuss the questions. Conclusions This Question Prompt List has successfully been adapted into a Swedish version and a Dutch version and includes questions about the HF trajectory which patients, their families, and health care professionals perceived to be relevant for discussion in clinical practice. Overall, patients and family members were not worried about the content in the Question Prompt List and if used in accordance with patients' and family members' preferences, the Question Prompt List can help to improve communication about the heart failure trajectory.
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| 10. |
- Hjelmfors, Lisa, et al.
(författare)
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Variables Related to Communication About Prognosis Between Nurses and Patients at Heart Failure Clinics in Sweden and the Netherlands.
- 2018
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Ingår i: Journal of Cardiovascular Nursing. - : Lippincott Williams & Wilkins. - 0889-4655 .- 1550-5049. ; 33:2, s. E1-E6
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In contrast to recommendations in recent guidelines, prognosis is not optimally discussed with patients with heart failure (HF). Reasons for not doing so can be related to both patient and provider characteristics.PURPOSE: The purpose of the study was to explore which patient- and nurse-related variables influence discussing prognosis with patients at an HF clinic.METHOD: Data from a previous survey on attitudes and clinical practice of HF nurses on discussing prognosis that was conducted in Sweden and the Netherlands were combined with data from a registration on topics that nurses discussed with their patients during a prespecified week at the HF clinic. Multivariable logistic regression analysis was performed to assess which variables are related to discussing prognosis.RESULTS: A total of 275 HF nurses (mean age, 49 years) and data of 1633 patients with HF (mean age, 71 years) were included in the study. Prognosis was discussed with 42% of all patients during the visit at the HF clinic. Patients with whom prognosis was discussed were more often in New York Heart Association classes III to IV (odds ratio [OR], 1.81; 95% confidence interval [CI], 1.44-2.26). Nurses discussing prognosis reported more knowledge on the topic (OR, 1.71; 95% CI, 1.36-2.16) and discussed more topics with the patient (OR, 1.27; 95% CI, 1.21-1.32). Dutch HF nurses were more likely to discuss prognosis compared with their Swedish colleagues (OR, 1.83; 95% CI, 1.43-2.33).CONCLUSIONS: Discussing prognosis with patients with HF by nurses at the HF clinic is related to the characteristics of patients and HF nurses. Future interventions to improve communications about prognosis therefore should have a broad approach.
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| 11. |
- Milberg, Anna, 1966-, et al.
(författare)
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Attachment figures when death is approaching : a study applying attachment theory to adult patients' and family members' experiences during palliative home care
- 2017
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Ingår i: Supportive Care in Cancer. - : Springer. - 0941-4355 .- 1433-7339. ; 25:7, s. 2267-2274
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Tidskriftsartikel (refereegranskat)abstract
- PurposeAttachment theory is currently receiving much attention in relation to how adults cope with severe illness. The study aims were using the experiences of patients and family members to explore attachment figures (a central concept within the theory) during palliative home care.MethodsTwelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed using qualitative content analysis.ResultsFour types of attachment figures were identified: (i) family and friends, (ii) health care practitioners, (iii) pets and (iv) God. Both non-physical and physical contact with the attachment figures facilitated a sense of security. In addition, the patient/family members and their attachment figures were described by some as a “we”, and when one part of the “we” felt insecure, this made the other also feel insecure. The patients’ unstable and progressing illnesses constituted a threat to the patients’ and family members’ sense of security. The availability of the attachment figures made them feel secure, and they could then divert their attention from the patients’ illnesses to other things in everyday life, e.g. socialising with family and friends. Some family members also had to cope with the loss of their own attachment figure, when the patient, who had previously been a source of security for them, was no longer able to offer protection and comfort due to the progression of the illness.ConclusionImportant aspects of attachment figures in the end-of-life context were identified, and their clinical implications will be discussed.
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| 12. |
- Milberg, Anna, 1966-, et al.
(författare)
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Participants' experiences of a support group intervention for family members during ongoing palliative home care
- 2005
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Ingår i: Journal of Palliative Care. - 0825-8597. ; 21:4, s. 277-284
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Tidskriftsartikel (refereegranskat)abstract
- 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. © 2005 Centre for Bioethics, IRCM.
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| 13. |
- Seiger Cronfalk, Berit, et al.
(författare)
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A one-day education in soft tissue massage : Experiences and opinions as evaluated by nursing staff in palliative care
- 2008
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 6:2, s. 141-148
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Increasing awareness of well-being aspects of physical touch has spurred the appreciation for soft tissue massage (STM) as part of palliative care. Educational programs are available but with no specific focus on utilization for this kind of care. The aim was to study the feasibility of a 1-day course in STM in clarifying nursing staff's experiences and opinions, but also to shed light on their motivation and ability to employ STM in the care of dying cancer patients. Method: In all, 135 nursing staff participated. The course consisted of theory and hands-on training (hand-foot-, back massage). Focus-groups with 30/135 randomly chosen participants were conducted 4 weeks after the intervention. This study engaged a qualitative approach using content analysis. Results: The overall opinion of the 1-day course was positive. The majority experienced the contents of the course to be adequate and sufficient for clinical care. They emphasized the pedagogical expertise as valuable for the learning process. The majority of nurses shared the opinion that their extended knowledge clarified their attitudes on STM as a complement in palliative care. Still, a few found it to be too basic and/or intimate. Three categories emerged during the analysis: experiences of and attitudes toward the education, experiences of implementing the skills in every-day care situations, and attitudes to the physical body in nursing care. Significance of results: The approach to learning and the pedagogical skills of the teacher proved to be of importance for how new knowledge was perceived among nurses. The findings may encourage hospital organizations to introduce short courses in STM as an alternative to more extensive education. Copyright © 2008 Cambridge University Press 2008.
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| 14. |
- Yngman-Uhlin, Pia, et al.
(författare)
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Circling around in tiredness : perspectives of patients on peritoneal dialysis
- 2010
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Ingår i: Nephrology Nursing Journal. - : Journal of the American Nephrology Nurses' Association. - 1526-744X .- 2163-5390. ; 37:4, s. 407-413
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 15. |
- Ekdahl, Anne, et al.
(författare)
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They do what they think is the best for me : Frail elderly patients' preferences for participation in their care during hospitalization.
- 2010
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Ingår i: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 80:2, s. 233-240
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To deepen the knowledge of frail elderly patients' preferences for participation in medical decision making during hospitalization. METHODS: Qualitative study using content analysis of semi-structured interviews. RESULTS: Patient participation to frail elderly means information, not the wish to take part in decisions about their medical treatments. They view the hospital care system as an institution of power with which they cannot argue. Participation is complicated by barriers such as the numerous persons involved in their care who do not know them and their preferences, differing treatment strategies among doctors, fast patient turnover in hospitals, stressed personnel and linguistic problems due to doctors not always speaking the patient's own language. CONCLUSION: The results of the study show that, to frail elderly patients, participation in medical decision making is primarily a question of good communication and information, not participation in decisions about medical treatments. PRACTICE IMPLICATIONS: More time should be given to thorough information and as few people as possible should be involved in the care of frail elderly. Linguistic problems should be identified to make it possible to take the necessary precautions to prevent negative impact on patient participation.
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| 16. |
- Ekdahl, Anne W, et al.
(författare)
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Are elderly people with co-morbidities involved adequately in medical decision making when hospitalised? : A cross-sectional survey
- 2011
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Ingår i: BMC Geriatrics. - London, UK : BioMed Central Ltd.. - 1471-2318. ; 11:46
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Medical decision making has long been in focus, but little is known of the preferences and conditions for elderly people with co-morbidities to participate in medical decision making. The main objective of the present study was to investigate the preferred and the actual degree of control, i.e. the role elderly people with co-morbidities wish to assume and actually had with regard to information and participation in medical decision making during their last stay in hospital.This study was a cross-sectional survey including three Swedish hospitals with acute admittance. The participants were patients aged 75 years and above with three or more diagnoses according to the International Classification of Diseases (ICD-10) and three or more hospitalisations during the last year. METHODS: We used a questionnaire combined with a telephone interview, using the Control Preference Scale to measure each participant's preferred and actual role in medical decision making during their last stay in hospital. Additional questions were asked about barriers to participation in decision making and preferred information seeking role. The results are presented with descriptive statistics with kappa weights. RESULTS: Of the 297 elderly patients identified, 52.5% responded (n = 156, 46.5% male). Mean age was 83.1 years. Of the respondents, 42 of 153 patients said that they were not asked for their opinion (i.e. no shared decision making). Among the other 111 patients, 49 had their exact preferred level of participation, 37 had less participation than they would have preferred, and 23 had more responsibility than they would have preferred. Kappa statistics showed a moderate agreement between preferred and actual role (κw = 0.57; 95% CI: 0.45-0.69). Most patients wanted to be given more information without having to ask. There was no correlation between age, gender, or education and preferred role. 35% of the patients agreed that they experienced some of the various barriers to decision making that they were asked about: 1) the severity of their illness, 2) doctors with different treatment strategies, 3) difficulty understanding the medical information, and 4) difficulty understanding doctors who did not speak the patient's own language. CONCLUSIONS: Physicians are not fully responsive to patient preferences regarding either the degree of communication or the patient's participation in decision making. Barriers to participation can be a problem, and should be taken into account more often when dealing with hospitalised elderly people.
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| 17. |
- Erichsén, Eva, 1959-, et al.
(författare)
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A phenomenological study of nurse´s understanding of honesty in palliative care
- 2010
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Ingår i: Nursing Ethics. - UK : sagepublications. - 0969-7330 .- 1477-0989. ; 17:1, s. 39-50
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Honesty is essential for the care of seriously ill and dying patients. The current study aimed to describe how nurses experience honesty in their work with patients receiving palliative care at home. The interviews in this phenomenological study were conducted with 16 nurses working with children and adults in palliative home-based care. Three categories emerged from analyses of the interviews: the meaning of honesty, the reason for being honest and, finally, moral conflict when dealing with honesty. The essence of these descriptions was that honesty is seen as a virtue, a good quality that a nurse should have. The nurses’ ethical standpoint was shown in the moral character they show in their work and in their intention to do good. This study could help nurses to identify different ways of looking at honesty to promote more consciousness and openness in ethical discussions between colleagues and other staff members.
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| 18. |
- Erichsén, Eva, 1959-, et al.
(författare)
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Constipation in specialized palliative care : factors related to constipation when applying different definitions
- 2016
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Ingår i: Supportive Care in Cancer. - : Springer Berlin/Heidelberg. - 0941-4355 .- 1433-7339. ; 24:2, s. 691-698
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT:For patients in palliative care, constipation is primarily a result of opioid treatment. Impacts from other factors related to constipation in palliative care are rarely studied.OBJECTIVES:The aim was to identify factors related to constipation in patients in palliative care, and then to compare these factors between patients with different types of constipation and patients without constipation.METHODS:Cross-sectional data on constipation was collected with a 26-item questionnaire from 485 patients in 38 specialist palliative care units in Sweden. Three different constipation groups were used; MC ONLY, PC ONLY, and MC & PC. Logistic regression analyses were used to calculate odds ratios.RESULTS:Patients with <3 defecations/week, MC ONLY, (n = 36) had higher odds of being hospitalized, bed-restricted, in need of personal assistance for toilet visits, and of having a poor fluid intake. Patients with the perception of being constipated, PC ONLY, (n = 93) had higher odds of having poor appetite, hemorrhoids, hard stool, more opioid treatment, less laxative treatment and of being more dissatisfied with constipation information. Patients with both <3 defecations/week and a perception of being constipated, MC & PC, (n = 78) had higher odds of having cancer- disease.CONCLUSION:There were several significant factors related to constipation with higher odds than opioid- treatment, for patients in palliative care, such as; hard stool, cancer diagnosis, dissatisfaction with information, low fluid intake, hemorrhoids, bed restriction, hospitalization, and need of personal assistance for toilet visits.
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| 19. |
- Eriksson, Helene, 1965-, et al.
(författare)
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End of Life Care for Patients Dying of Stroke : A Comparative Registry Study of Stroke and Cancer
- 2016
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Ingår i: PLOS ONE. - : PUBLIC LIBRARY SCIENCE. - 1932-6203. ; 11:2, s. e0147694-
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundAlthough 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.ObjectiveTo 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.DesignThis study is a retrospective, comparative registry study.MethodsA 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.ResultsCompared 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.ConclusionsThe 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.
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| 20. |
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| 21. |
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| 22. |
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| 23. |
- Friedrichsen, Maria, 1966-, et al.
(författare)
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Concerns about losing control when breaking bad news to terminally ill patients with cancer : Physicians' perspective
- 2006
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 9:3, s. 673-682
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To study and explore problems perceived by physicians when breaking bad news to advanced cancer patients about discontinuing or not offering tumor-specific treatment due to incurable cancer. Design: A qualitative phenomenographic interview study. Setting: The county of Östergötland in Sweden. Participants: Thirty physicians with different demographic characteristics. Results: According to the physicians' answers breaking bad news was perceived as involving a risk of losing control in different ways, regarding emotions, oneself, confidence, professionalism and patient trust. Four different main categories described as problems were identified, perceptions focusing on existential thoughts, relationships, knowledge, and perceptions related to time and environmental disturbances. Conclusion: Physicians perceived that breaking bad news to dying patients with cancer involved a risk of losing control. Existential thoughts and a lack of knowledge contribute to this risk. Theoretical education in existentiality/spirituality and clinical practice in a palliative context may help maintaining control. © Mary Ann Liebert, Inc.
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| 24. |
- Friedrichsen, Maria, 1966-
(författare)
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Crossing the border : Different ways cancer patients, family members and physicians experience information in the transition to the late palliative phase
- 2002
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Information in the transition to the late palliative phase is not a well-studied area, especially not from the perspective of patients and family members. The aim of this thesis was to describe how cancer patients, family members and physicians experience information during the transition from a curative or early palliative phase to a late palliative phase, i.e. when tumour-specific treatment could not be offered. Cancer patients (n=30) admitted to palliative hospital based home care, family members (n=20) of cancer patients, and physicians (n=30) working with cancer patients in different settings were included in order to create a maximum variation sampling.Tape-recorded, semi-structured interviews and qualitative, phenomenographic analyses were done in all the studies.Patients described the physician as an expert (study I), an important person during this event, despite characterising him/her in different ways ranging from the empathetic professional to the rough and ready expert. Their relationship with the physician was also stressed. Their own resources, i.e. a sense of well being, a sense of security and individual strength, and their previous knowledge, were important components regarding their ability to take part in the communication (study II). Patients interpret words and phrases carefully and can perceive them as forewarnings, as being emotionally trying, and as fortifying and strengthening (study III). The overall message could be interpreted as either focused on quality if life, on treatment or on death and threat.Family members wanted to protect the patient during this period and could be very active and prominent in their protective role (study IV). However, other family members described themselves as being in the background more or less involuntarily. Family members also felt that there were expectations regarding their behaviour, either that they should take over in terms of communication, or that they should restrict their participation. When giving information, the physicians had a clear goal - to make the patient understand while being as considerate toward the patient as possible. However, the strategies for reaching this goal differed and included: explaining and convincing, softening the impact and vaguely suggesting, preparing and adapting. Some physicians had a main strategy while others mixed different strategies depending on the context.The experience of receiving and providing information about discontinuing tumour specific treatment is like crossing a border, where patients experience the behaviour of the physician and the words they express of great significance. Family members assume the role of protectors. Physicians use different strategies in order to help patients cross the border.
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| 25. |
- Friedrichsen, Maria, 1966-
(författare)
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Justification for information and knowledge : Perceptions of family members in palliative home care in Sweden.
- 2003
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 1:3, s. 239-245
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Several studies have concluded that family members in palliative home care want information about the patient's disease. The aim of this study was to describe family members' perceptions of their motivation for receiving information about the patient's disease. METHOD: Semistructured tape-recorded interviews were performed with 20 family members of patients with incurable progressive cancer who were admitted to hospital-based home care in Sweden. Data were analyzed using a qualitative phenomenographic method. RESULTS: Family members justified their informational needs by emphasizing that they needed to understand and confirm what would happen when the disease progressed, to be mentally prepared for the future, to organize their daily life, to be a source of information to others, and that receiving information was a natural right. SIGNIFICANCE OF RESULTS: This study has revealed some explanations as to why family members want information. In clinical practice, it is important that palliative care team members are aware of family members' level of knowledge and their need for information, as this mental preparation is important.
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| 26. |
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| 27. |
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| 28. |
- Friedrichsen, Maria, 1966-
(författare)
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Språkets och samtalets betydelse
- 2013. - 1
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Ingår i: Palliativ vård. - Lund : Studentlitteratur. - 9789144070964 ; , s. 431-439
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Bokkapitel (populärvet., debatt m.m.)
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| 29. |
- Friedrichsen, Maria, 1966-, et al.
(författare)
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The lived experience of constipation in cancer patients in palliative hospital-based home care.
- 2004
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Ingår i: International Journal of Palliative Nursing. - 1357-6321 .- 2052-286X. ; 10:7, s. 321-325
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 30. |
- Hjelmfors, Lisa, et al.
(författare)
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Communicating prognosis and end-of-life care to heart failure patients : a survey of heart failure nurses' perspectives
- 2014
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Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 13:2, s. 152-161
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:Many heart failure (HF) patients have palliative care needs, but communication about prognosis and end-of-life care is lacking. HF nurses can play an important role in such communication, but their views on this have rarely been sought.AIMS:This study aims to describe HF nurses' perspectives on, and daily practice regarding, discussing prognosis and end-of-life care with HF patients in outpatient care. It further aims to explore barriers, facilitators and related factors for discussing these issues.METHODS:A national survey including nurses from outpatient clinics and primary health care centres was performed. Data was collected using a questionnaire on communication with HF patients about prognosis and end-of-life care.RESULTS:In total, 111 (82%) of the HF nurses completed the questionnaire. Most of them reported that physicians should have the main responsibility for discussing prognosis (69%) and end-of-life care (67%). Most nurses felt knowledgeable to have these discussions, but 91% reported a need for further training in at least one of the areas. Barriers for communication about prognosis and end-of-life care included the unpredictable trajectory of HF, patients' comorbidities and the opinion that patients in NYHA class II-III are not in the end-of-life.CONCLUSION:Although HF nurses feel competent discussing prognosis and end-of-life care with the HF patient, they are hesitant to have these conversations. This might be partly explained by the fact that they consider the physician to be responsible for such conversations, and by perceived barriers to communication. This implies a need for clinical policy and education for HF nurses to expand their knowledge and awareness of the patients' possible needs for palliative care.
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| 31. |
- Hjelmfors, Lisa, 1984-
(författare)
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Communication about the Heart Failure Trajectory in Patients, their Families and Health Care Professionals
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: There is an increasing awareness in the field of cardiology regarding the need for improved delivery of palliative care in patients with heart failure (HF). Professional guidelines have drawn attention to the importance of discussing the heart failure trajectory with patients and their families. These discussions can include, for example, talking about the prognosis, expectations for the future, and care at the end-of-life. It seems difficult for health care professionals to choose the right time for initiating these discussions. They often avoid these conversations because they are afraid of taking away hope and make the patients and their families anxious.Aim: The overall aim of this thesis was to improve communication about the heart failure trajectory in patients, their families, and health care professionals.Design and methods: This thesis includes five studies using different designs and data collection methods. Study I has a cross-sectional design using a questionnaire to collect data to describe heart failure nurses’ perceptions of and practice in discussing prognosis and end-of-life care with heart failure patients. Study II has a descriptive and comparative design, where a survey was performed to describe Swedish and Dutch heart failure nurses’ reasons for discussing or not discussing prognosis and end-of-life care with patients. Study III has an inductive and exploratory design, where HF patients participated in focus groups or individual interviews. Data was collected based on their perceptions of communication about the heart failure prognosis. Study IV was a small-scale ethnographic study describing and evaluating the delivery of a simulation when teaching third-year nursing students about end-of-life care at a Swedish university. Study V used co-design in which patients with HF from primary care, their family members and health care professionals (physicians and nurses) from palliative and HF care were invited to be constructive participants in the design process of a communication intervention. Health care professionals participated in a first feasibility testing of the intervention.Results: Most Swedish HF nurses had discussed prognosis (96%) and end-of-life care (84%) with a HF patient at some point in clinical practice. The nurses often reported that a physician was to have the main responsibility for such discussions (69%), but that the nurse was also believed to have a role to play (I). Prognosis and end-of-life care were, together with sexual activity, () the three least frequently discussed topics in HF clinics in both Sweden and the Netherlands (II). In conversations with 1,809 Swedish and Dutch HF patients, prognosis was discussed with 38% of the patients and end-of-life care was discussed with 10%. In study III, patients expressed different experiences of and preferences for communication about their HF prognosis. Many patients described that the health care professionals had not provided them with any prognosis information at all. The patients had different understandings of HF as a chronic illness, which had an impact on their preferences for communication about their prognosis (III). The simulation training described in the ethnographic study (IV) was part of an end-of-life care simulation during the last term of the 3- year bachelor degree level nursing education program, where students learn and practice basic palliative care. The students felt that the simulation training was a good opportunity to practice handling end-of- life situations as it gave them a chance to experience this situation and their own feelings and thoughts on death and dying. In study V, an intervention to improve communication about prognosis and end-of-life care in HF care was developed and some areas were feasibility tested. Heart failure patients, their families and health care professionals working in HF care or palliative care participated in the development process. Health care professionals (nurses and physicians) participated in the following feasibility testing of the intervention.Conclusions: This thesis shows that prognosis and end-of-life care are seldom discussed with HF patients in Swedish and Dutch heart failure care. and that many heart failure nurses have ambiguous attitudes towards discussing these topics with patients and their families (I+II). The patients described that they receive different messages concerning their heart failure, and that they also have different preferences for discussing the heart failure trajectory with health care professionals. The professionals need to understand the impact of heart failure on each patient and adapt the communication to each individual (III). End-of-life care simulation with skilled supervisors shows great promise for health care professionals to learn good communication skills in end-of-life care conversations (IV). A Question Prompt List and a communication course might be useful for improving communication about the heart failure trajectory in patients, their families, and health care professionals
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| 32. |
- Hjelmfors, Lisa, et al.
(författare)
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“I was told that I would not die from heart failure” : Patient perceptions of prognosis communication
- 2018
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Ingår i: Applied Nursing Research. - : Elsevier. - 0897-1897 .- 1532-8201. ; 41, s. 41-45
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Tidskriftsartikel (refereegranskat)abstract
- Aim and objectives To describe patients’ experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis.BackgroundProfessionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs.MethodsAn inductive and exploratory design was used. A total of 24 patients (75% men, 52–87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data.Findings Two overarching themes, “The message sent” and “Hoping for the best or preparing for the worst”, each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences.Conclusion This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.
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| 33. |
- Hjelmfors, Lisa, et al.
(författare)
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Using co-design to develop an intervention to improve communication about the heart failure trajectory and end-of-life care
- 2018
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Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 17
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention. Methods: Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy. Results: Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members. Conclusions: In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.
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| 34. |
- Olsson, Louise, et al.
(författare)
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Maintaining hope when close to death: insight from cancer patients in palliative home care
- 2010
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Ingår i: International Journal of Palliative Nursing. - London : Mark Allen group. - 1357-6321 .- 2052-286X. ; 16:12, s. 607-612
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Tidskriftsartikel (refereegranskat)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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| 35. |
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| 36. |
- Ring Jacobsson, Lisa, et al.
(författare)
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Coeliac disease : Women’s experiences in everyday life
- 2012
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Ingår i: Journal of Clinical Nursing. - : Blackwell Publishing. - 0962-1067 .- 1365-2702. ; 21:23-24, s. 3442-3450
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Tidskriftsartikel (refereegranskat)abstract
- Aim. This paper is a report of a descriptive study on what life is like as a woman living with coeliac disease (CD).Background. The therapy for CD is a gluten-free diet (GFD), 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 CD, particularly women, experience various kinds of inconvenience in relation to having CD and to being treated with GFD.Methods. A phenomenological approach as devised by Giorgi was used. Taperecorded qualitative interviews with a total of 15 women who were being treated for CD were conducted in 2008 in Sweden.Results. The results demonstrated that CD 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.Conclusion. The results of this study can help caregivers, and others, to understand and develop support for women with this condition.
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| 37. |
- Ring Jacobsson, Lisa, et al.
(författare)
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Does a Coeliac School increase psychological well-being in women suffering from coeliac disease, living on a gluten-free diet?
- 2012
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Ingår i: Journal of Clinical Nursing. - : Blackwell Publishing. - 0962-1067 .- 1365-2702. ; 21:5-6, s. 766-775
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Tidskriftsartikel (refereegranskat)abstract
- Aim and objective. To assess the effects of an active method of patient education on the psychological well-being of women with coeliac disease in remission. Background. Despite remission with a gluten-free diet, adults with coeliac disease and especially women experience a subjective poor health. Self-management education seems to be promising tool to help patients suffering from coeliac disease to cope with their disorder. Design. A randomised controlled trial. Methods. A total of 106 women, ≥20 years, with confirmed coeliac disease, who had been on a gluten-free diet for a minimum of five years. The intervention group (n = 54) underwent a 10-session educational programme, 'Coeliac School', based on problem-based learning. The controls (n = 52) received information regarding coeliac disease sent home on a regular basis. The primary outcomes were psychological general well-being measured with a validated questionnaire. Results. Participants in the Coeliac School reported a significant improvement in psychological well-being at 10 weeks, whereas the controls given usual care reported a worsening in psychological well-being. After six months, a significant improvement remained for the index of vitality. Conclusions. Patient education increased psychological well-being in women with coeliac disease. There is a need to refine the methods of patient education to make the effects of well-being more pronounced over time. Relevance to clinical practice. Patient education using problem-based learning promotes self-management in coeliac disease by improving the well-being of patients who have been struggling with the gluten-free diet for years.
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| 38. |
- Ring Jacobsson, Lisa, et al.
(författare)
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Impact of an Active Patient Education Programme on GastrointestinalSymptoms in Women with Celiac Disease Following a Gluten-free Diet : Randomized Controlled Trial
- 2012
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Ingår i: Gastroenterology Nursing. - United States : Lippincott Williams & Wilkins. - 1042-895X .- 1538-9766. ; 35:3, s. 200-206
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Tidskriftsartikel (refereegranskat)abstract
- 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, > 20 years, with celiac disease on a gluten free diet for minimum five years took part in a randomized, controlled trial. The intervention group (n=54) underwent a ten-session educational program “Celiac School”, based on problem-based learning. Controls (n=52) were sent information regarding celiac disease at home. Outcome measure was gastrointestinal symptoms at ten weeks and six months after intervention, assessed with the Gastrointestinal Symptom Rating Scale. After ten weeks “Celiac school” (p=0.013) the participating women reported significant improvements that remained six months later (p=0.029). 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 two groups but showed a significant improvement concerning one of its components, namely the index reflecting Abdominal Pain (p= 0.007). Intervention methods should be refined in order to reach an even more pronounced effect.
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