| 1. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Managing an altered social context-Patients experiences of staying away from home while undergoing proton beam therapy
- 2020
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Ingår i: Nursing Open. - : John Wiley & Sons. - 2054-1058. ; 7:4, s. 1157-1163
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To illuminate the experience of an altered social context for patients with primary brain tumours living away from home while undergoing proton beam therapy.Design: A descriptive, qualitative cross-sectional interview study.Methods: Nineteen patients were interviewed between December 2015-August 2016, either during (N = 7) or before and after (N = 12) their proton beam therapy. A hermeneutical analysis was performed.Results: Participants made adjustments to achieve control and well-being during the treatment period. The analysis also revealed two interrelated patterns that helped participants adjust: being part of the family from a distance and seeking affinity.Conclusion: It is important that patients receiving treatment far from home find a way to remain a part of their family and find affinity in the altered social context. Health professionals can prepare patients for the treatment period and can implement interventions to promote well-being for both patients and their relatives.
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| 2. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Evaluation of skin reactions during proton beam radiotherapy : patient-reported versus clinician-reporte
- 2021
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Ingår i: Technical innovations & patient support in radiation oncology. - : Elsevier. - 2405-6324. ; 19, s. 11-17
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Tidskriftsartikel (refereegranskat)abstract
- Background: Skin reaction is a common side-effect of radiotherapy and often only assessed as clinician-reported outcome (CRO). The aim was to examine and compare patient-reported outcome (PRO) of skin reactions with CRO for signs of acute skin reactions for patients with primary brain tumour receiving proton beam radiotherapy (PBT). A further aim was to explore patients' experiences of the skin reactions.Methods: Acute skin reactions were assessed one week after start of treatment, mid-treatment and end of treatment among 253 patients with primary brain tumour who underwent PBT. PRO skin reactions were assessed with the RSAS and CRO according to the RTOG scale. Fleiss' kappa was performed to measure the inter-rater agreement of the assessments of skin reactions.Results: The results showed a discrepancy between PRO and CRO acute skin reactions. Radiation dose was associated with increased skin reactions, but no correlations were seen for age, gender, education, occupation, other treatment or smoking. There was a poor agreement between patients and clinicians (κ = -0.016) one week after the start of PBT, poor (κ = -0.045) to (κ = 0.396) moderate agreement at mid treatment and poor (κ = -0.010) to (κ = 0.296) moderate agreement at end of treatment. Generally, patients' symptom distress toward skin reactions was low at all time points.Conclusion: The poor agreement between PRO and CRO shows that the patient needs to be involved in assessments of skin reactions for a more complete understanding of skin reactions due to PBT. This may also improve patient experience regarding involvement in their own care.
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| 3. |
- Ohlsson-Nevo, Emma, et al.
(författare)
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Patients' perspective in the context of proton beam therapy : summary of a Nordic workshop
- 2020
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Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 59:10, s. 1139-1144
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: On 15-16 November 2019, the Skandion Clinic in Sweden hosted the first Nordic workshop on 'Patients' perspective in proton beam therapy'. The workshop was conducted to describe and compare the patient care in PBT clinics in the Nordic countries and to initiate a collaboration, with the target to ensure patient participation and reduce the risk of inequity of access by lowering the barriers for accepting PBT in a distant clinic. The overarching aim of this workshop was to describe and compare the use of patients' perspectives in the Nordic PBT clinics.MATERIAL AND METHODS: Twelve participants attended the workshop, representing Denmark, Norway and Sweden. The participants were registered nurses working in patient care, researchers, physicist and leaders of the Skandion Clinic.RESULTS: The consensus of the workshop was that systematic use of patient experiences on individual and group level is essential for developing clinical practice and understanding the overall effects of PBT. A difference in how the Nordic countries use patient experiences in clinical practise was found. The importance of lowering the barriers for participation in national proton trials and proton treatment were emphasized, however, there is a lack of knowledge about individual and organizational barriers to accepting PBT, and further research is therefore needed.CONCLUSION: Collaboration between the Nordic countries regarding patients' perspectives in the context of PBT is of importance to compare national differences as well as to find similarities, but most importantly to learn from each other and to improve patient care. Nordic collaboration with focus on systematic collection of patient-reported outcomes in the context of PBT is unique. Collaboration in research offers the possibility to increase the inclusion of patients' perspectives in study protocols.
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| 4. |
- Langegård, Ulrica, 1969, et al.
(författare)
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Evaluation of quality of care in relation to health-related quality of life of patients diagnosed with brain tumor : a novel clinic for proton beam therapy
- 2019
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Ingår i: Supportive Care in Cancer. - : Springer. - 0941-4355 .- 1433-7339. ; 27:7, s. 2679-2691
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Patients with brain tumors constitute a vulnerable group, and it is important that they receive the highest quality of care (QoC). The study aim was to describe the perceptions of QoC and its association with health-related quality of life in brain tumor patients undergoing proton beam therapy in a newly established clinic.Method: Data were collected at the start of treatment and after 3 and 6weeks. Adult patients (18years old) with brain tumors (n=186) completed two self-administered questionnaires: a modified Quality from the Patients' Perspective, which measures perceived reality and subjective importance of care, and the EORTC QLQ-C30. Data were analyzed using parametric and non-parametric statistical tests.Results: The perceived QoC was highest for treatment information and lowest for dietician and smoking information, whereas interaction with doctors and nurses was rated as the most important aspect of quality of care. Subjective importance ratings were significantly higher than perceived reality ratings for 60% of items. A better global health was moderately correlated with a higher perceived support for fatigue.Conclusions: A need for quality improvement was identified for several aspects of patient care. Greater symptom distress during the treatment period led to greater perceived importance of symptom support. Ensuring QoC is complex and collaboration with other health care professionals is essential.Relevance to clinical practice: The clinic could improve QoC regarding information about possible symptoms, adjust care according to patient perceptions of importance, and involve patients in care decisions.
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| 5. |
- Langegård, Ulrica, 1969, et al.
(författare)
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Health-related quality of life in patients with primary brain tumors during and three months after treatment with proton beam therapy
- 2021
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Ingår i: Technical Innovations & Patient Support in Radiation Oncology. - : Elsevier BV. - 2405-6324. ; 17, s. 5-17
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Tidskriftsartikel (refereegranskat)abstract
- Background Proton beam therapy (PBT) is increasingly administered to patients with primary brain tumors. Benefits of new treatments must be weighed against side effects and possible deterioration in health-related quality of life (HRQoL). The aim of this study was to describe and compare HRQoL, including acute symptom experiences and associated factors, in patients with malignant and benign brain tumors treated with PBT. Materials and Methods Adult PBT-treated patients with primary brain tumors (n=266) were studied. HRQoL was assessed with EORTC QLQ-C30, QLQ-BN20, HADS, ISI and MFI before, during and three months after treatment. Associations with demographic and medical factors were explored. Results Between baseline and three months post-treatment: HRQoL decreased significantly in the global health/QOL domains physical functioning, role functioning and cognitive functioning in the malignant group, global health/QOL and physical functioning decreased significantly in the benign group, more comorbidity was significantly associated with increased motor dysfunction, leg weakness, headache and future uncertainty. Fatigue and depression were the most frequent symptoms in both groups. Independent predictors of risk factor recognition were age, sex, chemotherapy, comorbidity and education level. Discussion Global health/QOL in patient with brain tumors is very complex and multidimensional. Symptoms are interrelated and related to patient, tumor and treatment factors. It is important to identify aspects of HRQoL that may be affected by treatment. These include both benefits, expected to improve HRQoL, and negative changes such as symptom experience and influencing factors. Evidence-based guidelines are needed for symptom management, and for high quality of care for patients experiencing low PBT-related HRQoL.
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| 6. |
- Langegård, Ulrica, 1969, et al.
(författare)
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The Art of Living With Symptoms : A Qualitative Study Among Patients With Primary Brain Tumors Receiving Proton Beam Therapy
- 2020
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Ingår i: Cancer Nursing. - Philadelphia : LIPPINCOTT WILLIAMS & WILKINS. - 0162-220X .- 1538-9804. ; 43:2, s. E79-E86
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Tidskriftsartikel (refereegranskat)abstract
- Background: Symptom management in conjunction with proton beam therapy (PBT) from patient's perspective has not been explored. Such knowledge is essential to optimize the care in this relatively new treatment modality.Objective: The aim of this study was to explore the process of symptom management in patients with brain tumor receiving PBT.Methods: Participants were 22 patients with primary brain tumor who received PBT, recruited in collaboration with a national center for proton therapy and 2 oncology clinics at 2 university hospitals in Sweden. Interviews using open-ended questions were conducted before, during, and/or after treatment. Verbatim interview transcripts were analyzed using classic Grounded Theory.Results: "The art of living with symptoms" emerged as the core concept. This encompassed 3 interconnected symptom management concepts: "Adapting to limited ability," "Learning about oneself," and "Creating new routines." These concepts were summarized in a substantive theoretical model of symptom management. Despite the struggle to manage symptoms, participants lived a satisfactory life.Conclusions: Symptom management in conjunction with PBT comprises a process of action, thoughts, and emotions. The concepts that emerged indicated patients' symptom management strategies were based on their own resources.Implications for Practice: It is important that PBT facilities develop an approach that facilitates the symptom management process based on patients' experiences of symptoms, as well as their actions and available resources.
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| 7. |
- Ohlsson-Nevo, Emma, 1960-, et al.
(författare)
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Finding a wider horizon : experiences of being a next-of-kin of a person suffering from colorectal cancer as told after having participated in a psychoeducational program
- 2013
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 17:3, s. 324-330
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Tidskriftsartikel (refereegranskat)abstract
- AimThe aim of this study was twofold: first, to describe the experience of being the next-of-kin of a person suffering from colorectal cancer (CRC), and second, to describe how a psychoeducational program (PEP) might contribute to the next-of-kin's life experience. Psychosocial interventions for next-of-kin to cancer patients are effective in improving quality of life issues, although there are conflicting results in previous studies. Most studies have evaluated the effects of PEP for mixed cancer groups but there is little knowledge about how next-of-kin to a person treated for CRC describe their experience of life and their experience of participating in a PEP.MethodsThe study used a qualitative descriptive design. Individual, open-ended interviews with each of the 18 next-of-kin, of persons receiving treatment for CRC, who participated in a PEP. Data were analyzed using content analysis.ResultsBased on the experiences described by the next-of-kin to a person treated for CRC, the subtheme; Facing a personal challenge was developed. From their described experiences of participating in a PEP, the subtheme Obtaining New Insights and Perspectives emerged. One main theme was finally identified; Finding a Wider Horizon. The study illuminates the importance of integrating the next-of-kin/family in the colorectal cancer care.ConclusionThe findings from this study can be used to plan future interventions for next-of-kin to patients with CRC as it offers possibilities to understand the next-of-kin's situation and experience from participating in a PEP.
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| 8. |
- Ohlsson Nevo, Emma, 1960-, et al.
(författare)
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In the hands of nurses : A focus group study of how nurses perceive and promote inpatients' needs for physical activity
- 2020
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Ingår i: Nursing Open. - : Wiley-Blackwell Publishing Inc.. - 2054-1058. ; 7:1, s. 334-344
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Tidskriftsartikel (refereegranskat)abstract
- Aims: To describe how nurses perceive and promote inpatients' needs for physical activity during their stay at the ward.Design: A qualitative descriptive design was employed providing an exploration of how nurses perceive and promote inpatients' need for physical activity.Methods: Seven semi-structured focus group discussions were held between November 2016 and February 2017 with 29 nurses in three hospitals in Sweden. Both interaction analysis and content analysis of the data were conducted.Results: Patients are dependent on nurses' prioritizations and promotions to be sufficiently physically active during their stay at the ward. The external environment and the integration of physical activity affected the promotion of physical activity. The nurses perceived that understanding the patient's expectations was important and that promotion of physical activity was a joint responsibility of patient, relatives and healthcare professionals. The interaction analysis revealed no clear hierarchical pattern as all members in each focus group took initiative to open the discussions. The Registered Nurses contributed with more new ideas.
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| 9. |
- Ohlsson-Nevo, Emma, 1960-, et al.
(författare)
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Life is back to normal and yet not : partners' and patient's experiences of life of the first year after colorectal cancer surgery
- 2012
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Ingår i: Journal of Clinical Nursing. - Hoboken, USA : Wiley-Blackwell. - 0962-1067 .- 1365-2702. ; 21:3-4, s. 555-563
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To describe the experience of life the first year after surgery from the perspective of persons treated for colorectal cancer and their partners.Background: Colorectal cancer is a common cancer form, and treatment can cause unpleasant side effects such as sexual dysfunction and bowel problems. Partners struggle to keep family life normal and provide support. Little is known about couples' experiences a year after treatment for colorectal cancer.Design: Qualitative descriptive. Methods. Individual semi-structured interviews with 13 persons treated for colorectal cancer and their partners, a total of 26 participants.Results: One theme was identified in the study; ` Life is back to normal and yet not': participants described living a normal but different life than before. Three subthemes were identified; ` Life has a shadow of death', ` The treated body sets the rules' and ` To share or not share the illness'.Conclusions: Findings showed that both the patients' and their partners' lives were influenced by uncertainty and the condition of the patient. Attitudes varied towards sharing the illness. It was found that information needs varied both within and between couples. A future challenge to healthcare personnel is the obligation to meet the needs of both patients and their partners on the illness trajectory and recovery after treatment for colorectal cancer.Relevance to clinical practice: Findings enhance the understanding of the impact of colorectal cancer on both patients and partners. Healthcare personnel need to assess both the patient's and partner's need for information, support and assistance. Support groups could be an effective tool for providing information, communication and support. Future studies are needed to evaluate such groups.
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| 10. |
- Ohlsson Nevo, Emma, 1960-, et al.
(författare)
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Nurses’ perceptions of hospitalized patients’ need for progressed physical activity : a focus group study
- 2018
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Konferensbidrag (refereegranskat)abstract
- Background: Patients enrolled in wards at hospitals spend time in bed even if rest is not medically indicated. The inactivity in the hospital reduces muscle strength and can create a need for assistants that did not exist before or justified by the treated condition. Early and progressive mobilization is a key factor to maintain physical functioning during the care period in hospital. Despite the knowledge of the importance of physical activity, patients are not sufficiently mobilized. Reasons why patients are not mobilized are related to organizational factors as well as patient and nurse personal characteristics. With an understanding of nurses’ experiences, interventions to enhance patients’ physical activity can be develop aiming at reducing the risk of physical deterioration due to inactivity.Objective: The aim of the study was to describe how nurses perceive hospitalized patients’ needs for progressed physical activity during their stay at the wards.Method: A total of seven focus group discussions were conducted in seven wards at three different hospitals in Sweden. A total of 16 nurses and 14 nurse assistants participated. The analysis was conducted in two steps; First an interaction analysis of the communication and respond pattern in the focus groups and thereafter a content analysis of the transcribed text.Results: The analysis is in progress and the results will be presented at the conference.
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