Till Örebro universitet

Purpose: Under-diagnosed and uncontrolled symptoms in patients with prostate cancer during radiotherapy can have a negative impact on the individual's quality of life. An opportunity for patients to report their symptoms systematically, communicate these symptoms to cancer nurses and to receive self-care advice via an application in an Information and Communication Technology-platform could overcome this risk. The content in the application must precisely capture symptoms that are significant to both patients and health care professionals. Therefore, the aim of the study was to map and describe symptoms and self-care strategies identified by patients with prostate cancer undergoing radiotherapy, by health care professionals caring for these patients, and in the literature.

Methods: The study combines data from interviews with patients (n ¼ 8) and health care professionals (n ¼ 10) and a scoping review of the literature (n ¼ 26) focusing on the period during and up to 6 months after radiotherapy.

Results: There was a concordance between the patients, health care professionals, and the literature on symptoms during and after radiotherapy. Urinary symptoms, bowel problems, pain, sexual problems, fatigue, anxiety, depression, cognitive impairment and irregular symptoms were commonly described during the initial treatment period. Self-care strategies were rarely described in all three of the sources.

Conclusions: The results show which symptoms to regularly assess using an Information and Communication Technology-platform for patients with newly-diagnosed prostate cancer during radiotherapy. The next step is to evaluate the efficacy of using the platform and the accuracy of the selected symptoms and self-care advice included in a smartphone application.

Background: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care.

Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.

Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.

Conclusions: The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.

Purpose: The aim of this study was to test the feasibility and acceptability of an Information and Communication Technology platform for assessing and managing patient reported symptoms during radiotherapy for prostate cancer.

Methods: In cooperation with a health management company, using a patient experience co-design, we developed the platform operated by an interactive application for reporting and managing symptoms in real time. Nine patients diagnosed with prostate cancer and receiving radiotherapy were recruited from two university hospitals in Sweden. Evidence-based symptoms and related self-care advice specific to prostate cancer were implemented in the application based on a literature review and interviews with patients and health care professionals. In the test of the platform the patients reported symptoms, via a mobile phone, daily for two weeks and were afterwards interviewed about their experiences.

Results: Overall, the patients found the symptom questionnaire and the self-care advice relevant and the application user friendly. The alert system was activated on several occasions when the symptoms were severe leading to a nurse contact and support so the patients felt safe and well cared for.

Conclusions: The platform enabled increased patient involvement and facilitated symptom assessment and communication between the patient and the health care provider. The study's results support further development of the platform, as well as tests in full-scale studies and in other populations.

Objective: Family caregivers have been given increasing importance in palliative home care and face a great responsibility as caregivers for patients suffering from incurable illness. Preparedness for caregiving has been found to moderate negative effects and promote well-being in family caregivers. The aim of our study was to explore family caregivers' own experiences of preparing for caregiving in specialized palliative home care.

Method: An interpretive descriptive design was chosen. A strategic sampling method was applied with a focus on participants who rated their preparedness as high and low using a structured instrument. Qualitative interviews were completed with 12 family caregivers. They were analyzed using a constant-comparative technique.

Results: Family caregivers described their experience of preparing for caregiving as an ongoing process, rather than something done in advance. The process was illustrated through three subprocesses: "awaring" (realizing the seriousness of the situation), "adjusting" (managing a challenging situation), and "anticipating" (planning for the inevitable loss).

Significance of results: Knowledge about the process of preparedness for caregiving and its subprocesses could be valuable to healthcare professionals, given the positive effects shown by preparedness in this context. Being able to recognize the different subprocesses of preparedness for caregiving could provide healthcare professionals with opportunities to support family caregivers in managing them. Preparedness for caregiving should be seen as a process to be supported and promoted continuously in palliative home care, not just at enrollment.

Background. Physical activity during chemotherapy has been shown in several studies to reduce fatigue, improve symptoms and impact positively on health-related quality of life (HRQoL). Challenges associated with intervention studies on physical activity during cancer treatment relate to consistent adherence. The primary objective was to study feasibility and adherence of physical activity intervention among patients with cancer during adjuvant chemotherapy treatment. The secondary objective was to investigate the effects of physical activity on health aspects, including HRQoL, symptoms and surrogate markers for cardiovascular disease. Material and methods. This randomized controlled trial included patients with breast cancer (BRCA) and colorectal cancer (CRC) during adjuvant chemotherapy. The intervention continued for 10 weeks and included daily walks of 10 000 steps and a weekly supervised group walk. Adherence was assessed by a pedometer and the number of participants who reported step counts every week and percentage of participants who achieved the target steps every week. Results. Adherence average reached 91% during the intervention period; in total 74% completed the exercise intervention. The majority of the participants achieved an average of 83% of the target of 10 000 steps per day for 10 weeks. There was a significant increase in daily physical activity (p = 0.016) in the intervention group. Significant differences were also found for some breast cancer-specific symptoms [swelling, mobility and pain (p = 0.045)]. The study showed a relatively small weight gain an average of 0.9 kg in the intervention group and 1.3 kg in the control group. Conclusion. Physical activity in the form of walking is feasible during adjuvant chemotherapy treatment despite increasing symptoms. The physical activity increased in the intervention group during the study time and had a positive impact on breast symptoms and the weight gain was lower in comparison to previous studies.

Purpose: The overall aim of the project was to update and inform nurses of current best practice based on previously published literature to enable nurses to assess and manage breakthrough cancer pain (BTCP) and thereby to provide optimal management of BTCP. Methods: The EONS started a project in 2010 by recruiting a working group and a multidisciplinary advisory board to develop guidelines with the purpose of helping oncology nurses understand and recognise BTCP. Results: This paper presents and overview of the guideline. Key recommendations include; using an algorithm for assessment of BTCP, individualise treatment interventions, optimization of analgesia and reassessment of outcomes of interventions. Conclusions: By implementing the EONS guidelines nurses will utilise the latest available knowledge in clinical practice and the understanding and management of BTCP will improve assessment and overall management of breakthrough pain in cancer patients. (C) 2013 Elsevier Ltd. All rights reserved.

Background: Survivors of childhood cancer will, at some stage, move from pediatric to adult care and/or to a different model of care to continue to receive long-term follow-up. Literature relating to transitional care for childhood onset conditions exists, but little research has been undertaken into transition in a cancer context, specifically from an experiences perspective.

Objective: The aim of this study was to report how the process of transition should be considered within the context of young people's entire illness experience and how that experience can impact their transition readiness.

Intervention/Methods: A qualitative, collective case study approach was adopted. Semistructured interviews were conducted with young people, parents, and healthcare professionals. Young people's oncology case notes were also reviewed. RESULTS:: Data analysis generated a multidimensional and multiple-perspective understanding of the experience of the process of transition. A central orienting theme was identified: the experience of readiness in the context of transition.

Conclusion: Understanding the multifaceted components of readiness is crucial; readiness should embody people's illness experiences, the numerous and associated losses intertwined with a move from pediatric to adult care, and the simultaneous developmental changes occurring in people's lives.

Implications for practice: The findings provide a meaningful framework to understand the experience of transition from the perspective of young people, parents, and healthcare professionals. These findings could help with the planning and preparation of individualized transitional care pathways for survivors of childhood cancer.

Background: Body image dissatisfaction is a source of stress after burns and it is important to attempt to objectively measure this aspect. Unfortunately, there are no Swedish questionnaires to assess satisfaction of appearance after burns,. Aim: The aim of this study was to translate, culturally adapt and validate the Satisfaction With Appearance Scale (SWAP) into Swedish from American English to be used in the context of burn care. Method: The SWAP was translated and cross-cultural adapted inspired by the guidelines by Guillemin. Pre-testing with 13 burn patients was conducted and 90 patients tested the questionnaire in order to determine its psychometric properties. Results: Cronbach's alpha was 0.89 indicating a high level of internal consistency of Swedish SWAP. Test for construct validity showed that length of hospital stay, more severe burns and female gender generated significantly higher scores in SWAP-Swe. The principal-components analysis found similar subscales according to the original SWAP that together accounted for 68% of the total variance. Conclusions: SWAP-Swe is a reliable and valid instrument for use in a Swedish speaking population. The questionnaire was perceived to be relevant for usage in the context of burn care and is well understood by the patients. (C) 2013 Elsevier Ltd and ISBI. All rights reserved.

Poorly managed cancer pain is well known to profoundly impact the patient's daily life and interfere with quality of life. Nurses who cared for patients with cancer from 12 European countries participated in a survey of breakthrough cancer pain practice. The purpose was to investigate how nurses assess breakthrough cancer pain, use of standardised tools, confidence in supporting patients and awareness of medications. Responses from 1241 participants showed country variations. The majority of the sample was female, Germany had the highest proportion of male nurses (21.0%), followed by Greece (15.8%). A significantly larger proportion of nurses with longer experience and more education (78.8%) used a comprehensive definition of breakthrough cancer pain. Significant variations in training were found; 71% of Finnish nurses had received training compared with 6% of Greek nurses. Training and using a standardised assessment tool was associated with a significant increase in the nurses' perceived ability to distinguish between breakthrough and background pain. Nurses in countries with the highest proportion of training were most confident in supporting patients. In conclusion, there still exists problems with effective management of patients' breakthrough cancer pain, continuing inability to define the difference between background and breakthrough cancer pain leads to poor treatment.