| 1. |
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| 2. |
- Ahlstedt Karlsson, Susanne, et al.
(författare)
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An intervention mapping-based support program that empowers patients with endocrine therapy management
- 2022
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Ingår i: Evaluation and Program Planning. - : Elsevier BV. - 0149-7189. ; 92
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Tidskriftsartikel (refereegranskat)abstract
- Background: For women diagnosed with hormone-receptor-positive breast cancer, endocrine therapy (ET) is recommended. Patients experience diverse side effects, and difficulties in managing these side effects have been identified as obstacles for treatment continuation. The aim of this study was to describe the development of a support program for patients prescribed ET. Methods: Intervention mapping (IM) a comprehensive theory-based approach was used in the support program development. A participatory design was used and four advisory groups was formed including both patients and healthcare professionals. Results: This study employed the systematic stages of IM to develop a theory-based support program with the goal to empower patients prescribed ET to manage ETrelated symptoms and problems, and to illuminate the healthcare structure. The needs assessment identified three performance objectives: (1) Patients have knowledge of and understand their symptoms and their management strategies. (2) Patients have the knowledge and confidence to express their care needs and to ask for guidance from healthcare professionals. (3) Patients are active in and lead their healthcare process. Conclusion: This is a systematic developed model, built upon aspects of ET both from a patient´ perspective as well as from healthcare professionals’ perspectives.
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| 3. |
- Ahlstedt Karlsson, Susanne, et al.
(författare)
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Experiences of endocrine therapy after breast cancer surgery
- 2019
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Ingår i: Annals of Oncology. Abstract Book of the 44th ESMO Congress (ESMO 2019) 27 September – 1 October 2019, Barcelona, Spain. Vol. 30, Suppl. 5, s. v840. - : Elsevier BV. - 0923-7534.
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Konferensbidrag (refereegranskat)abstract
- Background For patients diagnosed with hormone-receptor-positive breast cancer, endocrine therapy (ET) is prescribed, which reduces recurrence and mortality rates (Early Breast Cancer Trialists’ Collaborative Group, 2011). Despite the prognostic benefits of ET, the adherence to treatment varies, and 30%–70% of the patients discontinue their treatment within five years (Daly et al., 2017; Tinari et al., 2015; Ursem et al., 2015), often during their first year of treatment (He et al., 2015), due to the fact that ET is associated with adverse side-effects (Regan et al., 2011). Methods The study was conducted in a surgical out-patient care unit at a hospital in Sweden. Inclusion criteria were women diagnosed with breast cancer and treated with ET after surgery. Forty-eight patients were invited to participate, of which 23 declined, thus 25 women were included. Seven focus group interviews, with two to five participants in each group, were conducted using an interview guide according to Krueger’s (2014) strategy. The interview guide contained six open-ended questions aiming to explore the women’s experiences of ET after breast cancer surgery. Inductive qualitative content analysis was used (Graneheim & Lundman, 2004). Results The analysis resulted in three categories that described the women’s experiences: the treatment “creates discomfort”; “promotes levels of management”; and “causes feelings of abandonment”. Women’s experiences of treatment could at first glance be seen as positive, as perceived protection, but after further analysis, a deeper meaning was identified: protection with reservation. When experiencing discomfort, the women were urged to manage the situation, although the mode of management sometimes varied. The women reported that they needed support, but when the support did not appear, they felt as though they had been abandoned. Moreover, knowledge about side-effects became an obstacle. The participants described feeling abandoned, but they also described their disease as “cancer light”. Conclusions Professionals need to explore the pre-knowledge and preconceptions that patients might have. This could be achieved by listening to the patient before providing them with information. The information needs to be customized specifically to each person. Funding Assar Gabrielsson’s Foundation, Herbert and Karin Jacobsson’s Foundation, and the Swedish Society of Nursing. Disclosure All authors have declared no conflicts of interest.
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| 4. |
- Ahlstedt Karlsson, Susanne, et al.
(författare)
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“It is not just any pill”—Women’s experiences of endocrine therapy after breast cancer surgery
- 2019
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 28:3
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Tidskriftsartikel (refereegranskat)abstract
- Objective: For patients diagnosed with hormone-receptor-positive breast cancer, endocrine therapy (ET) is usually prescribed to reduce recurrence and mortality rates. Despite the benefits, compliance with treatment varies. The aim of this study was to provide qualitative data about women's experiences with ET after breast cancer surgery. Methods: Twenty-five women, treated with Tamoxifen after breast cancer surgery, were interviewed in seven focus groups. Six open-ended questions were used to explore their experiences. The interviews were recorded, transcribed verbatim and analysed using inductive content analysis. Results: The analysis resulted in three categories that described the women's experiences: the treatment “creates discomfort”; “promotes levels of management”; and “causes feelings of abandonment”. Women's experiences of treatment could at first glance be seen as positive, as perceived protection, but after further analysis, a deeper meaning was identified: protection with reservation. When experiencing discomfort, the women tried to manage the situation, although the mode of management sometimes varied. The women reported that they needed support, but when the support did not appear, they felt as though they had been abandoned. Moreover, knowledge about side effects became an obstacle, as it could create fear of more severe symptoms. They also described that their disease was perceived by healthcare professionals as “cancer light”. Conclusion: The information needs to be customised specifically to each person. © 2019 John Wiley & Sons Ltd
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| 5. |
- Ahlstedt Karlsson, Susanne, et al.
(författare)
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Person-centred support programme (RESPECT intervention) for women with breast cancer treated with endocrine therapy: a feasibility study
- 2022
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Ingår i: Bmj Open. - : BMJ. - 2044-6055. ; 12:10
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Tidskriftsartikel (refereegranskat)abstract
- Objective The peRson-cEntred Support Programme EndoCrine Therapy intervention is a complex intervention encompassing a person-centred support programme for patients with breast cancer being treated with endocrine therapy (ET). The aim of this study was to explore the feasibility of the trial design and patient acceptability of the intervention and outcome measures and to provide data to estimate the parameters required to design the final intervention. Design A controlled before-and-after design following the Consolidated Standards of Reporting Trials 2010 statement for feasibility trials. Setting A surgical outpatient clinic in Sweden. Participants Forty-one patients (aged 47-85) with breast cancer who were treated with ET. Interventions Eligible patients were assigned to the control group or intervention group, which included individual education material, an individualised learning plan and a personalised reminder letter using a person-centred approach. The intervention could be delivered as a telephone or digital follow-up during a 12-week follow-up. Outcome measures The aims were to determine the recruitment rate, assess the rate of retention, explore whether the intervention was delivered according to the protocol, assess the preferred form of educational support, rate of education sessions, length per education session and length between each education session, determine the distribution of education materials and assess completion rates of patient-reported instruments, including the General Self-efficacy Scale, the Quality of Care from the Patient's Perspective Questionnaire and the Memorial Symptom Assessment Scale. Results Eighty-six per cent of the patients in the intervention group completed the intervention and questionnaires 3 months after their inclusion. The call attendance was 90%. During the intervention, the contact nurse complied with the intervention protocol. For self-efficacy, symptoms and quality of care, there were no differences in effect size between the control and intervention groups. Conclusions This intervention seems to be feasible and acceptable among patients.
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| 6. |
- Ahlstedt Karlsson, Susanne, et al.
(författare)
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Women’s coping strategies during the first three months of adjuvant endocrine therapy for breast cancer
- 2020
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Ingår i: Nursing Open. - : Wiley. - 2054-1058. ; 7:2, s. 605-612
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Tidskriftsartikel (refereegranskat)abstract
- Abstract Aim: The aim was to explore stressful events, experienced problems and used coping strategies during the first three months of undergoing ET. Design: This study used a mixed method design. Methods: A consecutive sample of 39 women newly diagnosed with breast cancer were included at the start of their adjuvant endocrine therapy. A daily coping assessment was used to create daily reports about stressful events or experienced problems and coping strategies. Results: The most frequently reported physical problems were sleeping difficulties. Anxiety was the most reported emotional problem. Patients used both emotion-and problem-focused coping, and sleeping difficulties were coped by relaxing, and anxiety was coped by thinking about something else. Conclusions: Patients experienced a variety of stressful events or problems during the first three months of endocrine therapy. They also used several coping strategies to endure the treatment.
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| 7. |
- Andersson, Viveka, et al.
(författare)
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Benefits of using the Brief Pain Inventory in patients with cancer pain: an intervention study conducted in Swedish hospitals
- 2020
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 28, s. 3721-3729
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Tidskriftsartikel (refereegranskat)abstract
- Purpose The prevalence of cancer pain is too high. There is a need for improvement of pain management in cancer care. The aim of this study was to explore whether the use of the multidimensional pain assessment questionnaire Brief Pain Inventory (BPI) could improve pain relief in hospitalized patients with cancer. Methods A controlled intervention study was performed at two hospitals in western Sweden, 264 patients were included, 132 formed a control group and 132 an intervention group. All participants completed the BPI and the Edmonton Symptom Assessment Scale (ESAS) at baseline. Only the researcher had access to questionnaires from the control group. The completed forms from the intervention group were presented to the patients’ care team. A follow-up took place after 2–5 days when patients in both groups rated the scales a second time. Results In the intervention group, significant differences in all measured items of the BPI were found at follow-up compared with baseline. Symptoms rated with the ESAS also decreased significantly, except shortness of breath. At follow-up, a significant increase in regular use of paracetamol, anti-neuropathic pain drugs and opioids was found, as well as elevated doses of fixed-schedule opioids. In the control group, differences between baseline and follow-up were significant regarding average pain and worst pain over the past 24 h. Conclusion Presenting the patient-reported BPI to the care team helped them to focus on patients’ pain, identify pain mechanisms and adjust analgesics accordingly. A possible explanation for the results is changes in the medication prescribed.
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| 8. |
- Andersson, Viveka, et al.
(författare)
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Pain and pain management in children and adolescents receiving hospital care: a cross-sectional study from Sweden
- 2022
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Pain is a common symptom in children receiving hospital care. Adequate pain management in paediatric patients is of the utmost importance. Few studies have investigated children's own experiences of pain during hospitalization. Aim To describe the prevalence of pain, self-reported pain intensity at rest and during movement, pain management and compliance with pain treatment guidelines in children and adolescents receiving hospital care. Furthermore, to examine self-reported statements about pain relief and how often staff asked about pain. Methods A quantitative, cross-sectional study with descriptive statistics as the data analysis method was conducted at a county hospital in western Sweden. Sixty-nine children/adolescents aged 6-18 years who had experienced pain during their hospital stay were included. A structured, verbally administered questionnaire was used to obtain pain reports. The participants were also asked what they considered alleviated pain and how often they told staff about pain. Patient demographics, prescribed analgesics and documentation of pain rating were obtained from medical records. Results Fifty children/adolescents (72%) experienced moderate to severe pain in the previous 24 hours. At the time of the interview 36% reported moderate to severe pain at rest and 58% during movement. Seven participants (10%) reported severe pain both at rest and during movement. About one-third were on a regular multimodal analgesic regimen and 28% had used a validated pain rating scale. Thirty children/adolescents (43%) reported that they had experienced procedural pain in addition to their underlying pain condition. Most of the children/adolescents (74%) reported that analgesics provided pain relief. Forty (58%) stated that various non-pharmacological methods were helpful. Conclusions Despite evidence-based guidelines, half of the children/adolescents experienced moderate to severe pain, highlighting the need for improvement. Pain levels should be assessed both at rest and during movement. Response to treatment should be evaluated to prevent undertreatment of pain. Compliance with guidelines and professional communication are of the utmost importance for pain management in children/adolescents. Non-pharmacological methods are a valuable part of a pain management strategy. This study shows that it is important to evaluate and improve pain care also outside specialised tertiary clinics.
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| 9. |
- Andersson, Viveka, et al.
(författare)
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Pain and pain management in hospitalized patients before and after an intervention
- 2017
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Ingår i: Scandinavian Journal of Pain. - : Walter de Gruyter GmbH. - 1877-8860 .- 1877-8879. ; 15, s. 22-29
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Tidskriftsartikel (refereegranskat)abstract
- Background and aim Studies have shown that pain is common among hospitalized patients and that there is a lack of compliance with pain management guidelines. Improving pain management does not only involve developing new drugs or technology; even more important is an effective organisation that utilises existing expertise. The aim of this study was to investigate whether pain in hospitalized patients can be reduced by implementing evidence-based pain management guidelines, providing education for staff and an organisation that includes pain responsibility nurses. Methods A cross-sectional study was carried out between 2009 and 2010 at two hospitals in southwest Sweden, comprising a baseline survey followed by an intervention. The study involved 306 patients, who answered questions about pain intensity at rest and while moving, disturbed sleep due to pain and whether they had used a pain rating scale while in hospital. Medical records were scrutinised for analgesic prescriptions. An intervention then took place, involving implementation of evidence-based guidelines, staff education and the introduction of pain responsibility nurses. A follow-up survey was carried out in 2012, in which 293 patients answered the same questions and their medical records were also reviewed. The baseline results were then compared with those of the follow-up survey. Results When compared with the baseline survey, the follow-up survey revealed significant differences in the use of validated pain rating instruments as well as the prescription of more appropriate analgesics. Prescription of paracetamol increased significantly in the follow-up survey; 56% of the patients were prescribed paracetamol on a regular basis, compared with 42% at baseline. There was also a significant increase in the use of strong opioids, from 38% at baseline to 55% at follow-up. Prescriptions of weak opioids decreased from 16% at baseline to 4% at follow-up. No significant differences were observed in patient pain levels in the follow-up survey. At baseline, 29% of the patients reported moderate to severe pain at rest (NRS 4–10) and at follow-up that figure was 24% (NRS 4–10). In both surveys, 41% reported moderate to severe pain (NRS 5–10) during movement. Thirty-nine percent reported disturbed sleep at night at both baseline and follow-up. Conclusions This study demonstrates that evidence-based guidelines made accessible to all staff as a pocket size booklet and on the intranet, in combination with staff education, pain responsibility nurses who informed other staff on their own wards, improved the prescription of analgesics in the hospitals studied. In order to achieve a noticeable effect for patients, i.e., reduced pain levels, an intervention containing more components than those employed in the present study is required. Implications Nurses and physicians need greater knowledge about the importance of pain rating. A vital part of pain management at hospitals is continuous evaluation of treatment outcomes to prevent severe pain and disturbed sleep. The complexity of pain and pain management requires commitment, time and knowledge on the part of healthcare staff. Multi-professional pain teams that support ward staff in pain management are necessary in order to reduce suffering and unnecessary pain in hospitalized patients. © 2016 Scandinavian Association for the Study of Pain
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| 10. |
- Browall, Maria, et al.
(författare)
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Development and Psychometric Evaluation of a New Short Version of the Swedish Frommelt Attitudes Toward Care of the Dying Scale
- 2021
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Ingår i: Cancer Nursing. - : Ovid Technologies (Wolters Kluwer Health). - 0162-220X .- 1538-9804. ; 44:4, s. 305-313
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The Frommelt Attitudes Toward Care of the Dying (FATCOD) is widely used as a measure of attitudes toward care of dying patients. However, poor factor structure and item redundancy have been reported across the literature.OBJECTIVE: A short version of the questionnaire is needed, to facilitate effective assessments of the attitudes of those caring for dying patients. The purpose of this study was to develop a FATCOD-Short Form and to secure its psychometric properties.INTERVENTIONS/METHODS: Data gathered from 1000 nurses in previous studies were pooled and reanalyzed. Principal components analysis and confirmatory factor analysis were utilized to assess the factor structure of the FATCOD-30. A Rasch model was used to evaluate the measurement functioning of the scale.RESULTS: Of the original 30 items, 9 items of FATCOD were chosen for retention in the short form based on the principal components analysis, floor or ceiling effects, interitem correlations, and item-total correlation. All 9 items had good internal reliability. Both confirmatory factor analysis and Rasch analysis supported the unidimensionality of the FATCOD-Short Form.CONCLUSIONS: The 9-item FATCOD-Short Form demonstrates evidence of acceptable validity and reliability to identify nurses' attitudes toward caring for dying persons because of its brevity and comprehensive content.IMPLICATIONS FOR PRACTICE: When changing curricula in nursing education or implementing new procedures in nursing practice, it is important to have valid instruments to evaluate the results of the change. Such instruments should not be too lengthy or complicated. FATCOD-Short Form is a brief and valid instrument that can be easily used.
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| 11. |
- Browall, Maria, et al.
(författare)
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Existential encounters: Nurses' descriptions of critical incidents in end-of-life cancer care
- 2014
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 18:6, s. 636-644
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Tidskriftsartikel (refereegranskat)abstract
- Nurses working with cancer patients in end of life care need to be prepared to encounter patients' psychosocial and spiritual distress. Aim: The aim of this study was to describe nurses' experiences of existential situations when caring for patients severely affected by cancer. Methods and sample: Nurses (registered and enrolled) from three urban in-patient hospices, an oncology clinic and a surgery clinic and a palliative homecare team were, prior to the start of a training program, invited to write down their experiences of a critical incident (CI), in which existential issues were featured. Results: Eighty-eight CIs were written by 83 nurses. The CIs were analyzed with qualitative content analysis. Two main themes were found: Encounters with existential pain experiences, which concerned facing death and facing losses; and Encountering experiences of hope, which concerned balancing honesty, and desire to live. Conclusions: This study points out that health care professionals need to be aware of patients' feelings of abandonment in exposed situations such as patients' feelings of existential loneliness. That there are some patients that express a desire to die and this makes the nurses feel uncomfortable and difficult to confront these occurrences and its therefore important to listen to patients' stories, regardless of care organization, in order to gain access to patients' inner existential needs.
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| 12. |
- Browall, Maria, 1963, et al.
(författare)
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Health care staff's opinions about existential issues among patients with cancer.
- 2010
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Ingår i: Palliative & supportive care. - : Cambridge University Press. - 1478-9523 .- 1478-9515. ; 8:1, s. 59-68
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The objective of this study was to explore health care staff's opinions about what existential issues are important to patients with cancer and staff's responsibility when existential issues are raised by patients. METHOD: Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff's opinions about patients' important existential questions and, second, about health care staff's responsibility when existential issues are raised by the patient. The interviews were tape-recorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories. RESULTS: Four categories and 11 subcategories emerged from the first question. The first category, "life and death," was based on joy of living and thoughts of dying. The second category "meaning," consisted of acceptance, reevaluation, hope, and faith. The third category, "freedom of choice," consisted of responsibility and integrity, and the fourth and last category, "relationships and solitude," consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff's responsibility, "to achieve an encounter," which was based on the subcategories time and space, attitudes, and invitation and confirmation. SIGNIFICANCE OF RESULTS: The strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.
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| 13. |
- Browall, Maria, et al.
(författare)
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The course of health related quality of life in postmenopausal women with breast cancer from breast surgery and up to five years post-treatment
- 2013
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Ingår i: Breast. - : Elsevier. - 0960-9776 .- 1532-3080. ; 49, s. S344-S345
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Tidskriftsartikel (refereegranskat)abstract
- Background: Previous studies include too few patients over 70 years to be able to assess treatment effects on Health Related Quality Of Life (HRQOL) in the older age group. We aimed to follow HRQOL in postmenopausal women (55-80 years) with breast cancer receiving adjuvant treatment, until five years post-treatment, and compare with a general population.Patients and methods: The patient sample included 150 women (adjuvant CT n=75 and RT n=75) and two reference samples from the Swedish SF-36 norm database.Results: Data from baseline showed significantly higher levels of physical functioning and general health among the patients compared to the reference sample, and significantly lower levels of bodily pain, emotional role functioning and mental health. Longitudinal analyses showed significant changes in all scales, and three different patterns (a decrease-stable, a decrease-increase, and a stable- increase pattern) were identified.Conclusion: Postmenopausal women seem to successfully manage the effects of adjuvant treatment on HRQOL.
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| 14. |
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| 15. |
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| 16. |
- Ek, Kristina, et al.
(författare)
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Death and caring for dying patients : exploring first-year students´descriptive experiences
- 2014
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Ingår i: International Journal of Palliative Nursing. - : Mark Allen Group. - 1357-6321 .- 2052-286X. ; 20:10, s. 509-515
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To describe first-year nursing students' experiences of witnessing death and providing end-of-life care.Methods: This study is part of a larger longitudinal project. Interviews (n=17) were conducted with nursing students at the end of their first year of education. To analyse the interviews (lived-experience descriptions), a thematic analysis, ‘a search for meaning’ (Van Manen, 1997) was applied.Results: The results are presented within the framework of four separate themes: (1) The thought of death is more frightening than the actual experience, (2) Daring to approach the dying patient and offering something of oneself, (3) The experience of not sufficing in the face of death and (4) Being confronted with one's own feelings.Conclusion: Nursing students require continuous support and opportunity to reflect and discuss their experiences about caring for dying patients and confronting death throughout the entirety of their education. In addition, teachers and clinical supervisors need to give support using reflective practice to help students to develop confidence in their capacity for caring for dying patients.
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| 17. |
- Falk, Hanna, 1977, et al.
(författare)
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Differences in Symptom Distress Based on Gender and Palliative Care Designation Among Hospitalized Patients.
- 2016
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Ingår i: Journal of Nursing Scholarship. - : Wiley. - 1527-6546 .- 1547-5069. ; 48:6, s. 569-576
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To explore patient-reported symptom distress in relation to documentation of symptoms and palliative care designation in hospital inpatients.DESIGN: This cross-sectional study analyzed data from 710 inpatients at two large hospitals in Sweden using the Edmonton Symptom Assessment Scale and the Memorial Symptom Assessment Scale. Chart reviews focused on nurses' and physicians' symptom documentation and palliative turning point.METHODS: Descriptive statistics were calculated for all variables and provided summaries about the sample. Patients were grouped according to gender, age, palliative care designation, and symptom documentation. The t test and chi-square test were used to calculate whether symptom distress varied between groups. A two-way analysis of variance was conducted for multiple comparisons to explore the impact of gender and age on mean symptom distress.FINDINGS: Females reported higher levels of symptom distress than did males related to pain, fatigue, and nausea. When comparing symptom distress between males and females with documentation pertaining to symptoms, there were significant differences implying that females had to report higher levels of symptom distress than males in order to have their symptoms documented.CONCLUSIONS: Females need to report higher levels of symptom distress than do males for healthcare professionals to identify and document their symptoms. It can be hypothesized that females are not receiving the same attention and symptom alleviation as men. If so, this highlights a serious inequality in care that requires further exploration.CLINICAL RELEVANCE: Considering that common reasons why people seek health care are troublesome symptoms of illness, and that the clinical and demographic characteristics of inpatients are changing towards more advanced ages with serious illnesses, inadequate symptom assessment and management are a serious threat to the care quality.
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| 18. |
- Fridh, Isabell, 1954, et al.
(författare)
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Extensive human suffering : a point prevalence survey of patients' most distressing concerns during inpatient care
- 2015
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 29, s. 444-453
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To explore patients' most distressing concerns during a hospital stay.BACKGROUND: The characteristics of hospitalised patients have changed. Care is provided at a higher age, lengths of stay have fallen and the nursing workload is increasing. It is presumed that hospitalised patients are more seriously ill and have more palliative needs than previously. Studies show that inpatients suffer from more distress than similar outpatients although there is a lack of overall knowledge about inpatients' distress and major concerns, regardless of age, diagnosis or care setting.METHODS: This study was part of a point prevalence survey (PPS) concerning symptom prevalence. Of the 710 patients who participated in the PPS, 678 (95%) answered an open-ended question in a questionnaire: What is your main concern or what is most distressing or troublesome for you at present? Using a life-world approach, the text was analysed qualitatively and patients' concerns were interpreted in two main dimensions, an intersubjective dimension and a temporal dimension.FINDINGS: The patients reported extensive suffering due to illness, symptoms and failing health. Patients were concerned about family members, existential issues and the future. Three aspects of the patients' most distressing concerns were interpreted: The suffering self, The suffering person in close relations and The suffering person in a threatening world.CONCLUSION: Hospitalised patients are affected by severe illness, distressing symptoms and existential quandaries, revealing extensive human suffering in the midst of the demanding activities that take place during an ordinary day in a hospital. To support patients and alleviate suffering, hospital staff need to be more sensitive to patients' most distressing concerns. This presupposes a hospital environment in which the value system supports caring and comforting behaviour.
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| 19. |
- Fristedt, Sofi, 1969-, et al.
(författare)
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Registered nurses and undergraduate nursing students' attitudes to performing end-of-life care
- 2021
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Ingår i: Nurse Education Today. - : Elsevier BV. - 0260-6917 .- 1532-2793. ; 98
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Tidskriftsartikel (refereegranskat)abstract
- Registered Nurses (RNs) are in the immediate position to provide End-of-life (EOL) care and counselling for patients and families in various settings. However, EOL-care often creates feelings of uncertainty and inadequacy linked to inexperience, lack of education, and attitude. To identify and describe factors associated with RNs' attitudes towards EOL-care, and to identify whether and how these attitudes differ from undergraduate nursing students' (UNSs) attitudes, a descriptive and comparative, quantitative study was performed. The FATCOD-instrument, focusing on attitude towards EOL-care, was used and the results analysed with descriptive and nonparametric statistics. In total, 287 RNs in 14 different specialist programmes, and 124 UNSs participated. A statistically significant difference (p = 0.032) was found in attitude towards EOL-care based on clinical experience. RNs in “Acute Care” and “Paediatric & Psychiatry Care” specialist programmes had a less positive attitude towards EOL-care (compared to RNs in other specialist programmes), while RNs attending the Palliative Care programme had the most positive attitudes. RNs and UNSs' scores differed statistically significantly in 17 out of 30 FATCOD variables. Finally, the results imply that there is a need for greater emphasis on further continuing education within EOL care for RNs working in all types of clinical specialities to encourage RNs talking about death and to enhance attitudes towards EOL care. © 2021 Elsevier Ltd
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| 20. |
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| 21. |
- Gyberg, Anna, et al.
(författare)
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Framing healthcare professionals in written adverse events: A discourse analysis
- 2022
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Ingår i: Nursing Inquiry. - : Wiley. - 1320-7881 .- 1440-1800. ; 29:3
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Tidskriftsartikel (refereegranskat)abstract
- Healthcare professionals have a major responsibility to protect patients from harm. Despite vast efforts to decrease the number of adverse events, the progression of patient safety has internationally been acknowledged as slow. From a social construction perspective, it has been argued that the understanding of patient safety is contextual based on historical and structural rules, and that this meaning construction points out different directions of possible patient safety actions. By focusing on fact construction and its productive and limiting effect on how something can be understood, we explored the discourses about healthcare professionals in 29 written reports of adverse events as reported by patients, relatives, and healthcare professionals. Through the analysis, a discourse about the healthcare professionals as experts was found. The expert role most dominantly included an understanding that adverse events were identified through physical signs and that patient safety could be prevented by more strictly following routines and work procedures. We drew upon the conclusion that these regimes of truth brought power to the expert discourse, to the point that it became difficult for patients and relatives to engage in patient safety actions on their terms.
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| 22. |
- Gyberg, Anna, et al.
(författare)
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Written reports of adverse events in acute care-A discourse analysis
- 2019
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Ingår i: Nursing Inquiry. - : Wiley. - 1320-7881 .- 1440-1800. ; 26:4
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Tidskriftsartikel (refereegranskat)abstract
- Adverse health care events are a global public health issue despite major efforts, and they have been acknowledged as a complex concern. The aim of this study was to explore the construction of unsafe care using accounts of adverse events concerning the patient, as reported by patients, relatives, and health care professionals. Twenty‐nine adverse events reported in an acute care setting in a Swedish university hospital were analyzed through discourse analysis, where the construction of what was considered to be real and true in the descriptions of unsafe care was analyzed. In the written reports about unsafe events, the patient was spoken of in three different ways: (a) the patient as a presentation of physical signs, (b) the patient as suffering and vulnerable, and (c) the patient as unpredictable. When the patient's voice was subordinate to physical signs, this was described as being something that conflicted with patient safety. The conclusion was that the patient's voice might be the only sign available in the early stages of adverse events. Therefore, it is crucial for health care professionals to give importance to the patient's voice to prevent patients from harm and not unilaterally act only upon abnormal physical signs.
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| 23. |
- Henoch, Ingela, 1956, et al.
(författare)
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Andnöd
- 2012
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Ingår i: Omsorg: Nordisk tidsskrift for Palliativ Medisin. - 0800-7489. ; 29:2, s. 9-14
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- There are many causes of respiratory distress, such as malignant diseases, COPD, or infections. In a study of 105 patients with lung cancer, focusing on shortness of breath, it was found that it is both a physical and an emotional experience that is best described by the patient. In the care of patients with respiratory distress should be borne in mind that dyspnea is a multidimensional experience. In critical situations when both respiratory distress and anxiety worse, it is important that staff be at the patient's side. Examinations should be limited to what the patient can benefit from. In the treatment of respiratory distress there are many different options. First, one should try to treat the cause of breathlessness. Patients often have their own strategies to relieve shortness of breath, it is important to ask for them. If such strategies do not help, healthcare staff can offer pharmacological or non-pharmacological treatment. Sometimes you get the best palliation of breathlessness through a combination of different types of treatment.
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| 24. |
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| 25. |
- Henoch, Ingela, 1956, et al.
(författare)
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Benefits, for patients with late stage chronic obstructive pulmonary disease, of being cared for in specialized palliative care compared to hospital. A nationwide register study
- 2021
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Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background In early stage chronic obstructive pulmonary disease (COPD), dyspnea has been reported as the main symptom; but at the end of life, patients dying from COPD have a heavy symptom burden. Still, specialist palliative care is seldom offered to patients with COPD; they more often receive end of life care in hospitals. Furthermore, symptoms, symptom relief and care activities in the last week of life for COPD patients are rarely studied. The aim of this study was to compare patient and care characteristics in late stage COPD patients treated in specialized palliative care (SPC) versus hospital. Methods Two nationwide registers were merged, the Swedish National Airway Register (SNAR) and the Swedish Register of Palliative Care (SRPC). Patients with COPD and < 50% of predicted forced expiratory volume in 1 s (FEV1), who had died in inpatient or outpatient SPC (n = 159) or in hospital (n = 439), were identified. Clinical COPD characteristics were extracted from the SNAR, and end of life (EOL) care characteristics from the SRPC. Descriptive statistics were used to describe the sample and the registered care and treatments. Independent samples t-test, Mantel-Haenszel chi-square test and Fisher's exact test was used to compare variables. To examine predictors of place of death, bivariate and multivariate logistic regression analyses were performed with a dependent variable with demographic and clinical variables used as independent variables. Results The patients in hospitals were older and more likely to have heart failure or hypertension. Pain was more frequently reported and relieved in SPC than in hospitals (p = 0.001). Rattle, anxiety, delirium and nausea were reported at similar frequencies between the settings; but rattle, anxiety, delirium, and dyspnea were more frequently relieved in SPC (all p < 0.001). Compared to hospital, SPC was more often the preferred place of care (p < 0.001). In SPC, EOL discussions with patients and families were more frequently held than in hospital (p < 0.001). Heart failure increased the probability of dying in hospital while lung cancer increased the probability of dying in SPC. Conclusion This study provides evidence for referring more COPD patients to SPC, which is more focused on symptom management and psychosocial and existential support.
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| 26. |
- Henoch, Ingela, et al.
(författare)
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De 6 S:n : Personcentrerad palliativ vård för alla åldrar
- 2022
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Konferensbidrag (populärvet., debatt m.m.)abstract
- De 6 S:n, självbild, symtomlindring, sociala relationer, sammanhang, strategier och självbestämmande, haranvänts för att bidra till personcentrerad palliativ vård i Sverige sedan 1990-talet. De 6 S:n har traditionellt använts inom specialiserad palliativ vård, men passar också för allmän palliativ vårdunder hela livsspannet. Palliativ vård av barn ställer stora krav. Ett projekt där De 6 S:n används för att bidra tillpersoncentrerad palliativ vård av barn kommer att presenteras. Inom äldreomsorg ställs stora krav på attbevara integritet och personcentrering när funktion, kognition och möjlighet till självbestämmande börjar avta.Vi presenterar forskning om hur kroppslig omvårdnad inom äldreomsorg kan bli mer personcentrerad och enmodell för att förbättra självbestämmande och därmed bidra till en personcentrerad palliativ vård inomäldreomsorgen.De 6S:n har diskuterats, preciserats och utvecklats av det nationella 6S-nätverket för att beskriva det teoretiskainnehållet och för att utveckla den praktiska användbarheten. Diskussionen är levande och ständigt fortgåendeför att förbättra personcentrerad palliativ vård för personer i olika åldrar och olika vårdkontext.
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| 27. |
- Henoch, Ingela, 1956, et al.
(författare)
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Development of a training intervention of existential support to patients with cancer.
- 2014
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Ingår i: Sigma Theta Tau International Honor Society’s 2nd European Regional Conference i Göteborg, Sverige, 2014-06-16 – 06-18..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Existential issues in patients with cancer need to be highlighted, but a literature review revealed lack of intervention studies suitable for support in existential crisis in daily healthcare. Aim: To develop and evaluate an intervention targeting existential issues in patients with cancer. Method: First, patients’ important existential issues were defined through a literature review and found to be supporting and detrimental existential issues. Secondly, focus group interviews with healthcare staff working with patients with cancer identified their patients’ existential issues as life and death, meaning, freedom, and relationships and solitude. The healthcare staff furthermore recognized their responsibility to achieve an encounter with the patients, but seemed to need more training in delivering existential support. Thereafter, the intervention was designed as training with individual and group reflections to healthcare staff concerning meaning, death, freedom, and loneliness with five sessions held biweekly. Prior to the training, the staff wrote critical incidents in which existential issues were brought up. The main outcome was determined to be the staff’s confidence in communication. Another potential outcome was the staff’s attitude to care for dying patients. The design was pilot-tested in a surgical clinic. Results: The main intervention study was conducted as a randomized controlled trial with 102 registered nurses and enrolled nurses from hospice, oncology clinic and palliative homecare team. The confidence in communication increased significantly in the training group from baseline to both first and the second follow-ups, whereas attitudes to care for dying patients did not change. Conclusion: Although positive outcome, the project needs to be further tested, to establish the stability of the intervention, broadening the subject groups, and exploring possible extension of the training. In the next step patients’ and staff’ perceptions of given support will be explored.
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| 28. |
- Henoch, Ingela, 1956, et al.
(författare)
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Development of an existential support training program for healthcare professionals
- 2015
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 13:6, s. 1701-1709
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Our aim was to describe the developmental process of a training program for nurses to communicate existential issues with severely ill patients.METHOD: The Medical Research Council (MRC) framework for the development and evaluation of complex interventions was used to develop a training program for nurses to communicate about existential issues with their patients. The steps in the framework were employed to describe the development of the training intervention, and the development, feasibility and piloting, evaluation, and implementation phases. The development and feasibility phases are described in the Methods section. The evaluation and implementation phases are described in the Results section.RESULTS: In the evaluation phase, the effectiveness of the intervention was shown as nurses' confidence in communication increased after training. The understanding of the change process was considered to be that the nurses could describe their way of communicating in terms of prerequisites, process, and content. Some efforts have been made to implement the training intervention, but these require further elaboration.SIGNIFICANCE OF RESULTS: Existential and spiritual issues are very important to severely ill patients, and healthcare professionals need to be attentive to such questions. It is important that professionals be properly prepared when patients need this communication. An evidence-based training intervention could provide such preparation. Healthcare staff were able to identify situations where existential issues were apparent, and they reported that their confidence in communication about existential issues increased after attending a short-term training program that included reflection. In order to design a program that should be permanently implemented, more knowledge is needed of patients' perceptions of the quality of the healthcare staff's existential support.
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| 29. |
- Henoch, Ingela, 1956, et al.
(författare)
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Development of the 6S Dialogue Tool to facilitate person-centred palliative care
- 2019
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 75:11, s. 3138-3146
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Tidskriftsartikel (refereegranskat)abstract
- Aims To develop and psychometrically test the 6S Dialogue Tool. Background The 6S Dialogue Tool was elaborated to provide knowledge to nurses about patients' preferences in congruence with the 6S person-centred palliative care model, which includes the S-concepts of self-image, symptom relief, self-determination, social relationships, synthesis and strategies. The tool needs to be scrutinized for appropriateness. Design A qualitative study investigating construct validity of the 6S Dialogue Tool. Methods Forty-six patients in palliative care services in Sweden responded to 15 questions from May 2015 - August 2016. Responses were analysed with qualitative content analysis. Results Six categories, capturing the meaning of the 6S-concepts, were formulated: Maintaining everyday life; Challenges in everyday life; Maintaining control; Maintaining selected relationships; Appraisal of life; and Appraisal of the future. Conclusion The responses to the 6S Dialogue Tool questions reflect the intent of the 6S-concepts. Nurses should integrate the 6S-concepts and the questions in their approach to facilitate to co-create meaningful palliative care in dialogue with the patient. Impact Patients' preferences must be explored to co-create palliative care in accordance with their own needs and beliefs. The 6S Dialogue Tool questions are suitable for obtaining patients' preferences and could be used as an approach in palliative care. Patients, families and nurses will have the potential to co-create palliative care and to improve possibilities for patients to have an appropriate death.
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| 30. |
- Henoch, Ingela, 1956, et al.
(författare)
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Digital health support - a good thing, but not for me. Experiences of family caregivers and healthcare staff
- 2023
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Ingår i: British Journal of Guidance & Counselling. - : Informa UK Limited. - 0306-9885 .- 1469-3534. ; 51:1, s. 150-161
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Tidskriftsartikel (refereegranskat)abstract
- There is an increased belief in the benefits of information and communication technologies (ICT) in healthcare, but the perceived benefits of ICT in family caregiver support need to be explored. This qualitative interview study aimed to describe how family caregivers and healthcare staff in COPD care experience ICT. The results showed that both family caregivers and staff had limited interest in ICT and stated that it might be better for a new generation but not for themselves. Both groups preferred face-to-face meetings instead of contact via ICT. Meeting the needs of an ageing population will require that health services adopt new technologies. Still, the importance of eye contact must not be underestimated, particularly when encountering fragile patients and their spouses.
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| 31. |
- Henoch, Ingela, 1956, et al.
(författare)
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Dyspnea experience and management strategies in patients with lung cancer
- 2008
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Ingår i: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 17:7, s. 709-715
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The aim of this paper was to describe lung cancer patients' experience of dyspnea and their strategies for managing the dyspnea. METHODS: Semi-structured interviews with two main questions about dyspnea experiences and management were conducted with 20 patients with lung cancer, not amenable to curative treatment, who had completed life prolonging treatments. Data analysis was made with a descriptive, qualitative content analysis. RESULTS: The two questions resulted in two domains with 7 categories and subcategories. The experience of dyspnea included four categories: 'Triggering factors' included circumstances contributing to dyspnea, which comprised physical, psychosocial and environmental triggers. Bodily manifestations were considered to be the core of the experience. 'Immediate reactions' concerned physical and psychological impact. The long-term reactions included limitations, increased dependence and existential impact concerning hope, hopelessness and thoughts of death. The experience of managing dyspnea included three categories: 'Bodily strategies', 'psychological strategies' and 'medical strategies'. CONCLUSION: Dyspnea experience is a complex experience which influences the life of the patients both with immediate reactions and long-term reactions concerning physical, emotional and existential issues in life and patients address this experience with managing strategies in order to take control of their situation, although they do not seem to be able to meet the existential distress they experience.
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| 32. |
- Henoch, Ingela, 1956
(författare)
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Dyspnea Experience and Quality of Life among persons with lung cancer in palliative care
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Dyspnea, a subjective, multidimensional experience of breathing discomfort commonly occurring in patients with incurable lung cancer, influences all aspects of life in the suffering per¬sons. To optimally enhance quality of life (QoL) and to identify persons most vulnerable to this symptom, it is important to investigate how to assess dyspnea, how other symptoms and coping are related to dyspnea, and what the consequences of dyspnea are, especially on QoL. Aim: The aim of this thesis was to describe how patients with lung cancer experience dyspnea and QoL over time when treatment options with curative or life-prolonging intent are no longer feasible. Methods: The thesis has as its point of departure the Symptom Management Model (SMM). A descriptive design was used, with three quantitative studies and one qualitative study. Participants in the quantitative studies were 105 consecutive patients diagnosed with lung cancer, approached in palliative phase of disease. In the qualitative study, 20 of the patients with dyspnea were included. Dyspnea, other symptoms, QoL, social support and coping capacity were measured with various ques¬tion¬naires at baseline (Papers I and II) and some were repeated at 3, 6, 9 and 12 months (Paper III). Medical data, including performance status, were obtained from medical records. Narrative inter¬views with questions about dyspnea experiences and manage¬ment were conducted and analysed using qualitative content analysis (Paper IV). Results: More than half of the patients experienced dyspnea. Different aspects of dyspnea correlated positively with anxiety, depression, fatigue, cough, performance status and negatively with coping capacity. Lower coping capacity predicted dyspnea. Dyspnea, depression and global QoL deteriorated over time. Performance status, anxiety, depression, different aspects of dyspnea, pain and the mea¬ningfulness component of coping capacity correlated with global QoL. Depression predicted QoL at 4/5 assessment points. Other predictors over time were coping capacity, anxiety, performance status, pain and social support. The CDS-S was found valid and reliable concerning criterion-related validity, convergent validity and internal consistency. The CDS-S correlated with the psychological dimension, but the visual analogue scale of dyspnea (VAS-D) did not. In the content analysis emerged four areas comprising categories and subcategories, which all are presented in a model that could be used to gain a better understanding of the dyspnea experience. ?Precedings of dyspnea? included circumstances contributing to dyspnea. ?Expressions of dyspnea? consisted of physical features and immediate reactions. ?Long-term consequences of dyspnea? included a changing life style and existential reflections. ?Strategies for managing dyspnea? included bodily, psychological and medical measures. Conclusions: Dyspnea is complex experience and should preferably be measured in a comprehensive way. The CDS-S proved to be a valid and reliable instrument to measure the dyspnea experience in patients in a palliative setting, which was also confirmed by the results in the qualitative study. The CDS-S was also found to better capture the emotional component of dyspnea than VAS-D could. Dyspnea increased over time and QoL deteriorated significantly from baseline to 3, 6 and 9 months and correlated strongly with anxiety and depression. Patients with lower coping capacity experienced higher levels of dyspnea and lower QoL. The meaningfulness component of coping capacity corre¬la¬ted with dyspnea at baseline and QoL over time. Dyspnea, as measured by the CDS-S, did not predict QoL, but depression was a consistent predictor of QoL. The consequences of dyspnea were life changes including limitations and increased dependence; and existential reflections. The patients used bodily, psychological strategies to manage their dyspnea. The results from the thesis could be useful when designing interventions to support patients in clinical practice and in research to evaluate interventions.
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| 33. |
- Henoch, Ingela, 1956, et al.
(författare)
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Dyspnea experience in patients with lung cancer in palliative care
- 2008
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 12:2, s. 86-96
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to describe the dyspnea experience and examine its relation to other symptoms, personal and health-related factors and its predictors in patients with lung cancer. The subjects were 105 patients diagnosed with lung cancer, approached when active anti-tumour treatment was closed. The patients completed a battery of questionnaires about several aspects of dyspnea experience, intensity of other symptoms and coping capacity. Medical data including performance status were obtained from medical records. Above 50% of the patients perceived dyspnea. Coping capacity, performance status and other symptoms correlated with different aspects of dyspnea experience. Dyspnea dimensions and activity-related dyspnea correlated with anxiety, depression, fatigue and cough as well as negatively to coping capacity. Performance status correlated with dyspnea intensity and activity-related dyspnea. Lower coping capacity predicted dyspnea; additional predictors were higher levels of anxiety and fatigue. Dyspnea in this group of patients was a complex experience, including physical and psychological aspects and should preferably be assessed in a comprehensive way. A nursing intervention to decrease dyspnea experience and anxiety could use knowledge from this study about the importance of coping capacity to better help patients with lung cancer to cope in their palliative phase of the disease
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| 34. |
- Henoch, Ingela, et al.
(författare)
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Early Predictors of Mortality in Patients with COPD, in Relation to Respiratory and Non-Respiratory Causes of Death - A National Register Study
- 2020
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Ingår i: International journal of chronic obstructive pulmonary disease. - 1178-2005. ; 15, s. 1495-1505
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Tidskriftsartikel (refereegranskat)abstract
- Background: Both single factors and composite measures have been suggested to predict mortality in patients with chronic obstructive pulmonary disease (COPD) and there is a need to analyze the relative importance of each variable. Objective: To explore the predictors of mortality for patients with COPD in relation to respiratory, cardiac, and malignant causes, as well as all causes of death. Methods: After merging the Swedish Respiratory Tract Register (SRTR) and the Swedish Cause of Death Register, patients with respiratory, cardiac, and other causes of death were identified. Demographic and clinical variables from the deceased patients' first registration with the SRTR were compared. Three univariable and multivariable Cox proportional hazards regression analyses were conducted for different causes of death, with time from first registration to either death or a fixed end date as dependent variable, and variables regarding demographics, respiration, and comorbidities as independent variables. Results: In the multivariable Cox models, mortality for patients with all causes of death was predicted by older age 1.79 (CI 1.41, 2.27), lower percentage of predicted forced expiratory volume in 1 second (FEV1 %) 0.99 (CI 0.98, 0.99), lower saturation 0.92 (CI 0.86, 0.97), worse dyspnea 1.48 (CI 1.26, 1.74) (p<0.002 to p<0.001), less exercise 0.91 (CI 0.85, 0.98), and heart disease 1.53 (CI 1.06, 2.19) (both p<0.05). Mortality for patients with respiratory causes was predicted by higher age 1.67 (CI 1.05, 2.65) (p<0.05), lower FEV1% 0.98 (CI 0.97, 0.99), worse dyspnea 2.05 (CI 1.45, 2.90), and a higher number of exacerbations 1.27 (CI 1.11, 1.45) (p<0.001 in all comparisons). For patients with cardiac causes of death, mortality was predicted by lower FEV1% 0.99 (CI 0.98, 0.99) (p=0.001) and lower saturation 0.82 (CI 0.76, 0.89) (p<0.001), older age 1.46 (CI 1.02, 2.09) (p<0.05), and presence of heart disease at first registration 2.06 (CI 1.13, 3.73) (p<0.05). Conclusion: Obstruction predicted mortality in all models and dyspnea in two models and needs to be addressed. Comorbidity with heart disease could further worsen the COPD patient's prognosis and should be treated by a multidisciplinary team of professional specialists.
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| 35. |
- Henoch, Ingela, 1956, et al.
(författare)
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Early Predictors of Mortality in Patients with COPD, in Relation to Respiratory and Non-Respiratory Causes of Death - A National Register Study
- 2020
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Ingår i: International Journal of Chronic Obstructive Pulmonary Disease. - 1178-2005. ; 15, s. 1495-1505
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Tidskriftsartikel (refereegranskat)abstract
- Background: Both single factors and composite measures have been suggested to predict mortality in patients with chronic obstructive pulmonary disease (COPD) and there is a need to analyze the relative importance of each variable. Objective: To explore the predictors of mortality for patients with COPD in relation to respiratory, cardiac, and malignant causes, as well as all causes of death. Methods: After merging the Swedish Respiratory Tract Register (SRTR) and the Swedish Cause of Death Register, patients with respiratory, cardiac, and other causes of death were identified. Demographic and clinical variables from the deceased patients' first registration with the SRTR were compared. Three univariable and multivariable Cox proportional hazards regression analyses were conducted for different causes of death, with time from first registration to either death or a fixed end date as dependent variable, and variables regarding demographics, respiration, and comorbidities as independent variables. Results: In the multivariable Cox models, mortality for patients with all causes of death was predicted by older age 1.79 (CI 1.41, 2.27), lower percentage of predicted forced expiratory volume in 1 second (FEV1 %) 0.99 (CI 0.98, 0.99), lower saturation 0.92 (CI 0.86, 0.97), worse dyspnea 1.48 (CI 1.26, 1.74) (p<0.002 to p<0.001), less exercise 0.91 (CI 0.85, 0.98), and heart disease 1.53 (CI 1.06, 2.19) (both p<0.05). Mortality for patients with respiratory causes was predicted by higher age 1.67 (CI 1.05, 2.65) (p<0.05), lower FEV1% 0.98 (CI 0.97, 0.99), worse dyspnea 2.05 (CI 1.45, 2.90), and a higher number of exacerbations 1.27 (CI 1.11, 1.45) (p<0.001 in all comparisons). For patients with cardiac causes of death, mortality was predicted by lower FEV1 (%) 0.99 (CI 0.98, 0.99) (p=0.001) and lower saturation 0.82 (CI 0.76, 0.89) (p<0.001), older age 1.46 (CI 1.02, 2.09) (p<0.05), and presence of heart disease at first registration 2.06 (CI 1.13, 3.73) (p<0.05). Conclusion: Obstruction predicted mortality in all models and dyspnea in two models and needs to be addressed. Comorbidity with heart disease could further worsen the COPD patient's prognosis and should be treated by a multidisciplinary team of professional specialists.
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| 36. |
- Henoch, Ingela, 1956, et al.
(författare)
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Equal palliative care for patients with COPD? A nationwide register study
- 2019
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Ingår i: Upsala Journal of Medical Sciences. - : Uppsala Medical Society. - 0300-9734 .- 2000-1967. ; 124:2, s. 140-147
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Tidskriftsartikel (refereegranskat)abstract
- Background: Although chronic obstructive pulmonary disease (COPD) is a life-limiting disease with a significant symptom burden, the patients are more often referred to nursing homes (NH), than to specialist palliative care (SPC) at the end of life (EOL). This study aimed to compare patients with COPD in SPC with those in NH and to compare the care provided. Methods: A national register study was carried out where the Swedish National Airway Register and the Swedish Register of Palliative Care were merged. COPD patients who died in NHs or short-term facilities were included in the NH group (n = 415) and those who died in SPC were included in the SPC group (n = 355). Demographic and clinical variables were included from the Swedish National Airway Register and variables concerning EOL care from the Swedish Register of Palliative Care. Results: Symptom prevalence was similar in NHs and SPC, but symptom assessment (32% vs 20%), symptom relief medication (93-98% in SPC vs 74-90% in NH), EOL discussions (88% vs 66%), and bereavement support (94% vs 67%) were more likely in SPC (in all comparisons p < 0.001). Younger age and co-habiting increased the probability of dying in SPC (p < 0.001). Conclusion: Despite similar symptom prevalence, older persons are more likely to be referred to NHs. If applying a palliative care philosophy in NHs, routine symptom assessment and prescription of rescue medication for frequent symptoms, would be more likely. Promoting advance care planning and EOL discussions at an earlier stage would result in more prepared patients and families. © 2019, © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
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| 37. |
- Henoch, Ingela, et al.
(författare)
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Existential concerns among patients with cancer and interventions to meet them: an integrative literature review.
- 2009
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Ingår i: Psycho-oncology. - : Wiley. - 1099-1611 .- 1057-9249. ; 18:3, s. 225-36
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: An integrative literature review was undertaken to explore existential concerns among patients with cancer with respect to components, related concepts and targets of interventions. METHODS: Comprehensive searches in MEDLINE, CINAHL, PsychINFO, Social Citation Index, SweMed+, Eurethics, NLM Gateway, Faculty of 1000 Medicine, Cochrane Library, EMBACE were undertaken. Each paper was read and classified according to design as descriptive qualitative, descriptive quantitative or interventional. Main themes, interventions and outcomes were identified. RESULTS: The searches yielded a total of 162 articles, of which 109 met inclusion criteria. Existential components from the qualitative studies were divided into two main themes: struggle to maintain self-identity and threats to self-identity. Quantitative studies mainly concerned relationships between existential concerns and other concepts. Interventions and assessed outcomes were consistent with components and relationships found in the descriptive studies. Relationships concerned physical and psychological domains; however, few interventions were evaluated against physical outcomes. No interventions applicable to everyday health-care practice were found. CONCLUSION: Interventions targeted and evaluated concepts related to existential concerns found in the descriptive studies. Gaps in research on existential concerns in patients with cancer include the need to clarify the concept; how patients' existential well-being may best be supported by health-care professionals in everyday practice; effects of existential interventions on physical symptoms; and stability of results of interventions.
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| 38. |
- Henoch, Ingela, 1956, et al.
(författare)
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Health-related quality of life in a nationwide cohort of patients with COPD related to other characteristics
- 2016
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Ingår i: European Clinical Respiratory Journal. - : Informa UK Limited. - 2001-8525. ; 3
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Tidskriftsartikel (refereegranskat)abstract
- Background: In chronic obstructive pulmonary disease (COPD), various factors, such as dyspnoea, obstruction, exacerbations, smoking, exercise capacity, and body mass index, have been found to influence mortality and health-related quality of life (HRQOL). In order to identify subgroups of patients needing special attention, the aim of the present study was to explore the relationships between disease progression factors and HRQOL across COPD stages. Methods: Baseline registrations from the Swedish COPD register of demographic, clinical, and patient-reported variables of 7,810 patients are presented. Dyspnoea was measured by the modified Medical Research Council (mMRC) dyspnoea scale and HRQOL by the Clinical COPD Questionnaire (CCQ). Results: This study shows as expected that patients with spirometrically more severe COPD had a significantly higher number of exacerbations and hospitalisations, significantly increasing dyspnoea, significantly decreasing body mass index and exercise capacity, and significantly worsening HRQOL. When adjusting for spirometric stage of COPD, deteriorated HRQOL was predicted by increasing dyspnoea, depression/anxiety, increasing number of exacerbations, and decreased exercise capacity. Further, these data show that an mMRC value of 2 corresponds to a CCQ value of 1.9. Conclusion: The COPD patients suffered from a significant symptom burden, influencing HRQOL. A surprisingly great proportion of patients in spirometric stages II-IV showed marked changes of CCQ, indicating a need for an improved collaboration between clinical pulmonary medicine and palliative care.
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| 39. |
- Henoch, Ingela, 1956, et al.
(författare)
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Influences of patient education on exacerbations and hospital admissions in patients with COPD - a longitudinal national register study
- 2018
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Ingår i: European Clinical Respiratory Journal. - : Informa UK Limited. - 2001-8525. ; 5:1
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Chronic obstructive pulmonary disease (COPD) contributes to impaired health-related quality of life (HRQoL). Patient education and smoking cessation programs are recommended to reduce the number of exacerbations and hospitalizations, but the effects of such programs have yet to be explored in larger samples. Objective: The aim was to explore the longitudinal effects of patient education and smoking cessation programs on exacerbations and hospital admissions in patients with COPD. Design: This is a register study where data from the Swedish National Airway Register, including 20,666 patients with COPD, were used. Baseline measures of demographic, disease-related, and patient-reported variables were compared with a follow-up, 10-30 months after baseline. Descriptive statistics and changes between baseline and follow-up were calculated. Results: Comparing those not participating in education programs to those who did, HRQoL deteriorated significantly between baseline and follow-up in non-participants; there was no change in either exacerbations or hospitalizations in either group; there was a significant difference in baseline HRQoL between the two, and, when controlling for this, there was no significant change (p = 0.73). Patients who participated in smoking cessation programs were younger than the non-participants; mean 66.0 (standard deviations (SD) 7.8) vs. mean 68.1 (SD 8.8), p = 0.006. Among participants in smoking cessation programs, the proportion with continued smoking decreased significantly, from 76% to 66%, p < 0.001. Exacerbations at follow-up were predicted by FEV1% of predicted value and exacerbations at baseline. Hospital admissions at follow-up were predicted by baseline FEV1% of predicted value and exacerbations at baseline. Conclusions: To prevent exacerbations and hospital admissions, treatment and prevention must be prioritized in COPD care. Patient education and smoking cessation programs are beneficial, but there is a need to combine them with other interventions.
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| 40. |
- Henoch, Ingela, 1956, et al.
(författare)
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Management of COPD, equal treatment across age, gender, and social situation? A register study
- 2016
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Ingår i: International Journal of Chronic Obstructive Pulmonary Disease. - : Informa UK Limited. - 1178-2005. ; 11, s. 2681-2690
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Tidskriftsartikel (refereegranskat)abstract
- Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease where treatment decisions should be based on disease severity and also should be equally distributed across age, gender, and social situation. The aim of this study was to determine to what extent patients with COPD are offered evidence-based interventions and how the interventions are distributed across demographic and clinical factors in the sample. Baseline registrations of demographic, disease-related, and management-related variables of 7,810 patients in the Swedish National Airway Register are presented. One-third of the patients were current smokers. Patient-reported dyspnea and health-related quality of life were more deteriorated in elderly patients and patients living alone. Only 34% of currently smoking patients participated in the smoking cessation programs, and 22% of all patients were enrolled in any patient education program, with women taking part in them more than men. Less than 20% of the patients had any contact with physiotherapists or dieticians, with women having more contact than men. Men had more comorbidities than women, except for depression and osteoporosis. Women were more often given pharmacological treatments. With increasing severity of dyspnea, participation in patient education programs was more common. Dietician contact was more common in those with lower body mass index and more severe COPD stage. Both dietician contact and physiotherapist contact increased with deteriorated health-related quality of life, dyspnea, and increased exacerbation frequency. The present study showed that COPD management is mostly equally distributed across demographic characteristics. Only a minority of the patients in the present study had interdisciplinary team contacts. Thus, this data shows that the practical implementation of structured guidelines for treatment of COPD varies, to some extent, with regard to age and gender. Also, disease characteristics influence guideline implementation for each individual patient. Quality registers have the strength to follow-up on compliance with guidelines and show whether an intervention needs to be adapted prior to implementation in health care practice.
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| 41. |
- Henoch, Ingela, 1956, et al.
(författare)
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Nursing Students’ Attitudes toward Caring for Dying Persons - Development during Nurse Education.
- 2016
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Ingår i: Palliative Medicine : A Multiprofessional Journal. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background and aim: Most nurses will care for dying patients in their work and nursing education need to prepare students for this task. The attitudes toward dying and death, and communication with patients and families are important issues in palliative care education. The aim was to describe nursing students’ attitudes toward caring for dying patients during undergraduate education, factors influencing changes in attitudes, and how prepared students feel to perform end of life care. Design and methods: This is a longitudinal study exploring the development of nursing students’ attitudes to care for dying patients with the questionnaire Frommelt Attitude Toward Care of the Dying Scale (FATCOD) first, at the beginning of their education (T1), second, at the beginning of the second year (T2) and finally, at the end of the third year of education (T3). FATCOD is a 30 item questionnaire exploring attitudes to care for dying patients; items are rated on a five-point Likert scale. Total FATCOD score, all items summated ranging from 30 to 150, for T1, T2 and T3 was analyzed with ANOVA. Length of theoretical and presence of practical palliative care education were hypothesized to influence changes in attitudes. Students also evaluated support and preparation from education. At all three occasions, 117 nursing students from six universities in Sweden participated. Results and interpretation: The total FATCOD increased from 126 to 132 from T1 to T3. Theoretical palliative care education became significant predictor of changes in attitudes towards caring for dying patients in that five weeks education better predicted changes in attitudes than three weeks. Students with five weeks theoretical palliative care education also felt more prepared and supported by the education to take care of a dying patients. Students did not feel prepared to take care of a dead body or meet families. Although nursing students’ attitudes increased, they need more preparation in palliative care.
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| 42. |
- Henoch, Ingela, 1956, et al.
(författare)
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Nursing students' experiences of being involved in a clinical research project.
- 2014
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Ingår i: Sigma Theta Tau International Honor Society’s 2nd European Regional Conference i Göteborg, Sverige, 2014-06-16 – 06-18..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Nursing education can positively affect nurses' attitudes toward nursing research, resulting in better patient outcomes. Experiential learning theory was the basis for this study. Making use of the students' experiences, observations and reflections in training related to nursing research could facilitate the students' use of a deep learning approach and thus contribute to a better understanding of nursing research and evidence-based practice. Aim: To explore nursing students' experiences of involvement in clinical research, their approach to learning and their interest in nursing research. Design/methods: This was a cross-sectional study in which 126 nursing students were invited to be involved as data collectors in a research project as part of their training in research methodology in second year of nurse education. The data collection concerned to help patients to complete a symptom assessment form in a structured interview. The students completed an evaluation form and the Revised Study Process Questionnaire, exploring deep and surface level of approach to learning. The questionnaires were analyzed quantitatively and one open-ended question was analyzed qualitatively. Results: On the whole, the students were happy to be involved in the data collection although a minority felt uncertain and exposed. Students with a deeper approach to learning felt that their involvement had increased their interest in nursing research and their interest and knowledge of symptom assessment and they stated that data collection should be a regular feature of the course. Conclusions: Participation as data collectors in research has the potential to increase interest in nursing research among students with higher levels of deep learning. Further studies are needed to examine ways to increase interest in research among students with lower levels of deep learning.
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| 43. |
- Henoch, Ingela, 1956, et al.
(författare)
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Nursing students' experiences of involvement in clinical research : An exploratory study
- 2014
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Ingår i: Nurse Education in Practice. - : Churchill Livingstone. - 1471-5953 .- 1873-5223. ; 14:2, s. 188-194
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Tidskriftsartikel (refereegranskat)abstract
- Background Nursing education can positively affect nurses' attitudes toward nursing research, resulting in better patient outcomes. Experiential learning theory was the basis for this study. Objectives To explore nursing students' experiences of involvement in clinical research, their approach to learning and their interest in nursing research. Design Cross-sectional. Methods One hundred and twenty-six nursing students were invited to be involved as data collectors in a research project as part of their training in research methodology. The students completed an evaluation form and the Revised Study Process Questionnaire. The questionnaires were analyzed quantitatively and one open-ended question was analyzed qualitatively. Results On the whole, the students were happy to be involved in the data collection although a minority felt uncertain and exposed. Students with a deeper approach to learning felt that their involvement had increased their interest in nursing research and they stated that data collection should be a regular feature of the course. Conclusions Participation as data collectors in research has the potential to increase interest in nursing research among students with higher levels of deep learning. Further studies are needed to examine ways to increase interest in research among students with lower levels of deep learning.
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| 44. |
- Henoch, Ingela, 1956, et al.
(författare)
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Palliative Care Research : A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012
- 2016
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 30:1, s. 5-25
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Forskningsöversikt (refereegranskat)abstract
- Background: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.Methods: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.Results: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.Conclusions: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.
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| 45. |
- Henoch, Ingela, 1956, et al.
(författare)
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Patients’, family members’ and healthcare staffs’ opinions about existential issues as a base for an educational intervention
- 2011
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-4368 .- 2045-435X. ; 1:1
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Tidskriftsartikel (refereegranskat)abstract
- Objective To explore patients', family members' and healthcare staff's opinions about existential issues important to patients with cancer and their relatives. Methods Two integrative literature reviews were conducted about existential issues among cancer patients and relatives, and interventions to meet these issues. Four focus groups were conducted with healthcare staff working with cancer patients at different stages about patients' existential issues, and staff's responsibility when existential issues are raised. Results In the patient review, existential issues were divided into two themes: struggle to maintain self-identity and threats to self-identity. Relatives' existential issues concerned living both in and beyond the presence of death, with reminders of death, compelling them to respond to life close to death and seek support. Few interventions directed to patients or relatives applicable to everyday healthcare practice were found. Focus groups with staff revealed four categories of patients' existential issues, life and death, meaning, freedom of choice, relationships and solitude. According to staff, their responsibility concerned achieving an encounter with the patient. Conclusion Results from three studies are congruent in that, patients, relatives and staff agree, although in different ways, about the importance of existential issues to patients and relatives. Healthcare staff was aware of the importance of existential issues and are to some extent confident about how to act when these issues are raised by the patients. Ongoing studies The project group now continues implementing findings from these studies in an educational intervention to healthcare staff in different settings, and planning interventions to patients and relatives.
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| 46. |
- Henoch, Ingela, 1956, et al.
(författare)
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Perception of quality of care : Comparison of the views of patients' with lung cancer and their family members
- 2012
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Ingår i: Journal of Clinical Nursing. - Oxford : Wiley. - 0962-1067 .- 1365-2702. ; 21:3-4, s. 585-594
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives. To explore potential differences within dyads of patients with lung cancer and family members judgment of different aspects of quality of care and relationships between quality of care and personal and health-related characteristics. Background. High quality of care is important for acceptable quality of life in patients in palliative care. If patients are unable to participate in quality of care assessments or decision-making, family members might often act as proxies, despite the complicated nature of their own situation. Design. Cross-sectional survey design. Method. A patient and family member version of the abbreviated questionnaire Quality from Patients' Perspective, with additional items about perceived health and opinions about care, was mailed to members of the Swedish lung cancer Patient Organisation. Wilcoxon's signed rank test was used to identify potential differences within 51 patient-family member dyads' quality of care ratings. Relationships between Quality from Patients' Perspective dimensions and demographic and healthrelated variables were examined with Spearman's correlations. Results. Patient-family member dyads had high levels of agreement in ratings of perceived reality of quality of care. Family members generally rated the subjective importance of individual items higher than did the patient in the dyad, with significant difference in the dimension ` socio-cultural approach'. Older patients were found to rate the physical-technical conditions higher than younger patients, in relation to perceived reality but not subjective importance. Women family members were found to rate the subjective importance of medical-technical competence, identity-oriented approach and socio-cultural approach significantly higher than men did. Conclusions. Patients with lung cancer and their family members agree in ratings of the perceived reality, but they differ more in ratings of the subjective importance of quality of care. When patients are unable to communicate their preferences, family members' opinions could be used as proxies concerning concrete aspects of quality of care. Concerning more subjective aspects, family members' ratings should be interpreted with precaution, as it could diverge from patients' own opinion. Relevance to clinical practice. The perceptions of the importance of different aspects of quality of care were less related to health status than were judgments of quality of care received. This might suggest that the care patients received fulfilled neither the patients' nor family members' expectations, which is an important message to healthcare professionals and which would demand further exploration.
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| 47. |
- Henoch, Ingela, 1956, et al.
(författare)
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Pressure ulcers in palliative care: development of a hospice pressure ulcer risk assessment scale.
- 2003
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Ingår i: International journal of palliative nursing. - 1357-6321. ; 9:11, s. 474-84
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to construct a pressure ulcer risk assessment scale appropriate for palliative care patients. Risk assessments were performed using the modified Norton scale and nine newly constructed scales, consisting of the modified Norton scale with various changes. Data were collected from 98 patients in a Swedish hospice between April 1999 and September 2000. Pressure ulcer occurrence was registered weekly in the patient record. Increasing age, male gender, physical inactivity, immobility, decreasing food and fluid intake, incontinence, poor general physical condition and lean body constitution were shown to be significant risk factors for development of pressure ulcers in terminally ill cancer patients. After further testing of the data, one scale was found to be superior in identifying patients at risk, with higher validity than the modified Norton scale. The assessment items in this new scale, The Hospice Pressure Ulcer Risk Assessment Scale (in Swedish: Hospice Riskbedöming Trycksår, (HoRT)), are physical activity, mobility and age.
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| 48. |
- Henoch, Ingela, 1956, et al.
(författare)
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Symptom dimensions as outcomes in interventions for patients with cancer : A systematic review
- 2018
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Ingår i: Oncology Nursing Forum. - : Oncology Nursing Society. - 0190-535X .- 1538-0688. ; 45:2, s. 237-249
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Tidskriftsartikel (refereegranskat)abstract
- PROBLEM IDENTIFICATION: Symptom experience in patients with cancer consists of several dimensions, often measured descriptively within various populations but seldom used as intervention outcomes. This review aims at describing symptom dimensions as outcomes of interventions designed to alleviate symptoms in patients with cancer and to describe these interventions' effects on at least two symptom dimensions. LITERATURE SEARCH: The PRISMA statement for reporting systematic reviews was used. Searches were undertaken in various indexing sites. DATA EVALUATION: Extracted data included design, participants, intervention and control group treatment, targeted symptom dimension, and summary of results. SYNTHESIS: 2,041 articles were identified and 15 were included. The symptom dimensions were intensity, distress, prevalence, frequency, consequences, and quality. Eleven interventions had significant effect on symptom dimensions, mostly on intensity and distress. IMPLICATIONS FOR PRACTICE: Oncology nurses need clinical skills to be able to understand patients' experiences through their narratives. Various interventions are targeted at symptoms, and these need to be implemented to provide evidence-based symptom management.
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| 49. |
- Henoch, Ingela, 1956, et al.
(författare)
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Symptom Distress Profiles in Hospitalized Patients in Sweden: A Cross-Sectional Study.
- 2014
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Ingår i: Research in nursing & health. - : Wiley. - 1098-240X .- 0160-6891. ; 37:6, s. 512-523
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Tidskriftsartikel (refereegranskat)abstract
- Symptom distress profiles of patients with a variety of diagnoses at two hospitals in Sweden were examined using a point-prevalence cross-sectional survey design. The sample included 710 patients present on internal medicine, surgery, geriatric, and oncology acute care hospital wards of each hospital on a single day. Symptom distress data were collected via structured interviews using a 0-10 numeric rating scale (NRS). Fatigue was the most prevalent symptom, experienced by 76.2% of the patients, followed by pain (65.2%) and sleeping difficulties (52.8%). Symptoms were fairly distressing (median NRS 5-6). Patients experiencing high distress from fatigue and pain were more likely to be female, living alone, and to have more symptoms. Latent class analysis revealed three symptom distress profiles that differed with respect to the degree of distress and number of symptoms. The profiles were not substantially differentiated by diagnoses. Symptom distress needs to be assessed and treated on an individual basis, rather than predicting distress levels based on diagnosis alone. © 2014 Wiley Periodicals, Inc.
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| 50. |
- Henoch, Ingela, 1956, et al.
(författare)
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Symptom distress profiles in hospitalized patients in Sweden—a point prevalence survey
- 2014
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Ingår i: Quality of life research. 21st Annual Conference of the International Society for Quality of Life Research. - : Springer Science and Business Media LLC. - 0962-9343 .- 1573-2649.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Context: Troublesome symptoms are the most common reason for seeking hospital care. Since many patients report multiple symptoms concurrently, symptom research needs to study symptom clusters. There are two conceptual approaches to symptom cluster research: (a) the identification of symptom clusters by investigating associations among different symptom reports; (b) the identification of subgroups of patients that reflect different symptom profiles. Symptom clusters and symptom profiles have been examined in patients with cancer. However, no studies have examined symptom profiles based on patients' self-reported symptom distress in heterogeneous groups of hospitalised patients. Objective: To examine symptom distress profiles of hospitalised patients. Method: Symptom distress data were collected at two hospitals in Sweden via point prevalence surveys using numeric rating scales (NRS) of pain, dyspnoea, fatigue, sleeping difficulties, loss of appetite, depression and anxiety. Patients were grouped according to symptom experience using two approaches: (a) classification of patients with high versus low pain and fatigue distress scores; (b) classification based on a latent class analysis of symptom profiles. Results: In the 710 patients, fatigue (76.2%) and pain (65.3%) were the most prevalent symptoms (median NRS 5 to 6). The group of patients experiencing high fatigue and pain distress were to a greater extent female, living alone and diagnosed with musculoskeletal diseases, and had a higher number of symptoms than the low pain and fatigue group. The latent class analysis revealed three latent classes that differed in ratings and symptom distress profiles. People in the low symptom distress class (LSDC) reported less distress on average than people in medium (MSDC) and high symptom distress classes (HSDC). Compared to LSDC, people in HSDC were more likely to be female and live alone. Latent class membership, reflective of different symptom distress profiles, was not substantially explained by different diagnoses. Conclusions: The majority of patients admitted to hospital experience symptom distress at a level that requires symptom management. Symptom distress is a subjective illness experience and needs to be treated as such, irrespective of diagnosis. Although symptom distress was analysed with two different approaches, the most distressed patients were women who were living alone.
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