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Background: A growing body of studies indicate benefits of physiotherapy for patients in palliative care, for symptom relief and wellbeing. Though physiotherapists are increasingly acknowledged as important members of palliative care teams, they are still an underutilized source and not fully recognized. The aim of this study was to explore the variety of activities described by physiotherapists in addressing the needs and problems of patients and their families in specialized palliative care settings. Methods: Using a free-listing approach, ten physiotherapists working in eight specialized palliative care settings in Sweden described as precisely and in as much detail as possible different activities in which patients and their families were included (directly or indirectly) during 10 days. The statements were entered into NVivo and analysed using qualitative content analysis. Statements containing more than one activity were categorized per activity. Results: In total, 264 statements, containing 504 varied activities, were coded into seven categories: Counteracting a declining physical function; Informing, guiding and educating; Observing, assessing and evaluating; Attending to signs and symptoms; Listening, talking with and understanding; Caring for basic needs; and Organizing, planning and coordinating. In practice, however, the activities were intrinsically interwoven. The activities showed how physiotherapists aimed, through care for the body, to address patients' physical, psychological, social and existential needs, counteracting the decline in a patient's physical function and wellbeing. The activities also revealed a great variation, in relation not only to what they did, but also to their holistic and inseparable nature with regard to why, how, when, where, with whom and for whom the activities were carried out, which points towards a well-adopted person-centred palliative care approach. Conclusions: The study provides hands-on descriptions of how person-centred palliative care is integrated in physiotherapists' everyday activities. Physiotherapists in specialized palliative care help patients and families to bridge the gap between their real and ideal everyday life with the aim to maximize security, autonomy and wellbeing. The concrete examples included can be used in understanding the contribution of physiotherapists to the palliative care team and inform future research interventions and outcomes. [ABSTRACT FROM AUTHOR]

Background: Individualized cancer rehabilitation should be an integral part of cancer care. Contact nurses play a key role in identifying patient needs and coordinating evidence-based interventions to support rehabilitation. However, cancer rehabilitation remains marginal in current practice, as contact nurses face challenges due to the lack of systematic processes for assessment, intervention, and follow-up, limiting its implementation across the cancer care trajectory. This study aims to explore contact nurses in cancer care views on their role in and prerequisites for cancer rehabilitation., Methods: Data were collected through 20 individual interviews with contact nurses working in Swedish cancer care and analyzed using qualitative content analysis., Results: A holistic approach to cancer rehabilitation was emphasized, yet establishing routines for assessment and addressing patients' changing needs was described as challenging. Contact nurses experienced themselves as responsible for rehabilitation even though their role often was unclear. Rehabilitation was further seen as a process often determined by the medical trajectory rather than patients' needs. To establish prerequisites for cancer rehabilitation supportive leadership and sufficient resources is essential., Conclusion: There is a gap between cancer rehabilitation guidelines and their implementation in clinical practice, emphasizing the need for structure to support contact nurses to provide evidence-based individualized cancer rehabilitation. To enable cancer rehabilitation, supportive leadership at the organizational level is essential for contact nurses to establish routines in their clinical practice. These routines should align the rehabilitation process with patient needs, ensuring that rehabilitative services are effectively integrated into regular healthcare visits., Clinical Trial Number: Not applicable., Competing Interests: Declarations. Ethics approval and consent to participate: This study was conducted adhering to the principles of the Helsinki Declaration [42] and was approved by the Regional Ethics Review Board in Gothenburg, Sweden (registration number 2022-03764-01). All heads of departments signed an informed consent form with permission to contact eligible CNCCs. All participants received written and oral information and signed informed consent prior to the interview. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests., (© 2025. The Author(s).)

Background: Family members play a crucial role in supporting women with breast cancer during their recovery. In the complex situation of being an informal caregiver, their own health and ability to support the patient needs to be acknowledged. The aim was to explore the experiences, needs and roles of family members throughout the rehabilitation process of women with breast cancer., Methods: A qualitative study was conducted, involving semi-structured individual telephone interviews with 20 purposefully selected family members of women with breast cancer (13 men aged 24-79 years, 7 women aged 19-76 years). Data analysis utilized conventional content analysis and used "casing" as the analysis technique. The study is part of the ReScreen randomized controlled trial and all participants gave informed consent., Results: The interviews revealed significant variation among family members, leading to the emergence of different typologies based on their reactions and specific preconditions. These typologies included: 1) The case of the assertive and confident team leader, 2) The case of the frustrated but persistent guardian, 3) The case of the reassured bystander, and 4) The case of the neglected outsider. While not mutually exclusive, the cases demonstrated clear similarities and differences in whether individuals felt secure or insecure in the rehabilitation process and their level of involvement in this process. Some described feelings of being involved and active in the process while others experienced not being involved and described feelings of abandonment. However, regardless of their role, family members reported that their own health was seldom considered by healthcare professionals., Conclusions: This study sheds light on the concept of "we-disease," where the role of a family member is interrelated with factors such as their health literacy, supporting role, level of involvement, relationship, and identity during the patient's rehabilitation process. This highlights significant divergence in whether family members perceive the rehabilitation process as a collaborative effort or an individual challenge. These perceptions greatly impact their own well-being and ability to support women with breast cancer, underscoring the importance of recognizing family members as informal caregivers and offering tailored support from healthcare professionals when needed., Trial Registration: ClinicalTrials.gov NCT03434717. Registered February 15, 2018., Competing Interests: Declarations. Ethical approval and consent to participate: This study was a part of the ReScreen study that was approved by the Regional Ethical Review Board in Lund, Sweden (Dnr 2015/505) and Swedish Ethical Review Authority (amendments 2018/924, 2020–04664). The potential participants received oral and written information about the study on several occasions and were given time to consider their participation. They were assured confidentiality and that they could decline participation or withdraw from the study at any time. Written informed consent was obtained from all family members willing to participate. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests., (© 2024. The Author(s).)

Background: Cancer affects not only the person with the disease but those around them. Being a family member is described as strenuous and, often, associated with stress, anxiety and feelings of loneliness. There is a heightened risk of distress for family of those with fast-progressing, severe oesophageal or gastric cancer. Early palliative care involving family is vital yet often overlooked. In order to include family members in early palliative care their management in everyday life needs to be explored., Method: Qualitative inductive interview study using content analysis guided by Graneheim and Lundman., Result: The analysis resulted in the overarching theme "Managing the disease together but still alone". Three categories were identified: Adapting to the disease, Taking control of the situation, Processing emotions. Each category described family members management in various aspects of everyday life together with the ill person and alone., Conclusion: The results may contribute to an awareness of family members' management of large parts of everyday life and, further, their feelings of loneliness, and indicates that family members should be included early in oesophageal or gastric cancer palliative care. Further studies are needed to develop the content of such family-inclusive early palliative care., (© 2024. The Author(s).)

Background: A high level of competence among staff is necessary for providing patient-safe surgical care. Knowledge regarding what factors contribute to the professional development of specialist nurses in surgical care and why they choose to remain in the workplace despite high work requirements is needed. To investigate and describe the organizational and social work environment of specialist nurses in surgical care as part of studying factors that impact on professional development., Method: This was a cross-sectional study with a strategic convenience sampling procedure that recruited 73 specialist nurses in surgical care in Sweden between October to December 2021. The study was guided by STROBE Statement and checklist of cross-sectional studies. The validated Copenhagen Psychosocial Questionnaire was used, and additional demographic data. Descriptive statistics were performed and the comparison to the population benchmarks was presented as the mean with a 95% confidence interval. To study potential differences among the demographic and professional characteristics, pairwise t tests were used with Bonferroni adjustment for multiple comparisons with a significance level of 5%., Results: Five domains were identified as factors related to success, as they received higher scores in relation to population benchmarks: quality of leadership, variation of work, meaning of work and work engagement as well as job insecurity. There was also a significant association between a having a manager with low nursing education and job insecurity (p = 0.021)., Conclusions: Quality of leadership is important for the professional development of specialist nurses in surgical care. Strategic work seems to include managers with a higher nursing education level to prevent insecure professional working conditions., (© 2023. The Author(s).)

Background: Multidisciplinary team meetings (MDTMs) represent an integral component of modern cancer care and have increasingly been implemented to ensure accurate and evidence-based treatment recommendations. During MDTMs, multiple and complex medical and patient-related information should be considered by a multi-professional team whose members contribute various perspectives. Registered nurses (RNs) are expected to share information on the patient perspective at MDTMs. However, research suggests that RNs' contributions to case discussions are limited and that patient perspective is generally underrepresented. Our aim was to explore RNs' views of the prerequisites for and barriers to the inclusion of the patient perspective in MDTMs in Swedish cancer care., Methods: Data were collected from four focus group interviews with 22 RNs who worked as contact nurses in Swedish cancer care. Interviews were transcribed and analysed using inductive content analysis., Results: The analysis identified two categories and five subcategories. The participants presented different views and expressed ambivalence about the patient perspective in MDTMs. Subcategories were related to medical versus holistic perspectives, the added value of patient perspective, and possibilities for patient contributions. The participants also discussed prerequisites for the patient perspective to be considered in MDTM decision-making process, with subcategories related to structures promoting attention to the patient perspective and determinants of RNs' contributions to case discussions in MDTMs., Conclusions: This study demonstrates various views related to the patient perspective in MDTMs and identifies a great need to clarify the RN's role. Our results indicate that if enhanced presentation of the patient perspective in MDTMs is desired, key information points and structures must be established to collect and present relevant patient-related information., (© 2022. The Author(s).)

Background: Patients with oesophageal and gastric cancer have a low likelihood of being cured and suffer from a broad spectrum of symptoms and problems that negatively affect their quality-of-life (QOL). Although the majority (67-75%) of patients at the time of diagnosis suffer from an incurable disease, research has primarily focused on the pre- and postoperative phase among patients treated with curative intent, with little attention to symptoms and problems in the diagnostic phase, especially in those who cannot be offered a cure., Methods: In this cross-sectional study 158 patients newly diagnosed with oesophageal and gastric cancer visiting the surgical outpatient department for a preplanned care visit were included consecutively during 2018-2020. The validated instruments QLQ-C30 and QLQ-OG25, developed by the European Organization for Research and Treatment of Cancer (EORTC), and selected items from the Integrated Patient Outcome Scale (IPOS) were used to assess QOL, symptoms and problems. Differences between patients with a curative and a palliative treatment strategy were analysed using t-test and Mann-Whitney U test. The QLQ-C30 and QLQ-OG25 scores were compared to published reference data on the general Swedish population., Results: Among all, the QOL was markedly lower, compared with general Swedish population (mean ± SD, 55.9 ± 24.7 vs 76.4 ± 22.8, p < 0.001). Compared to general population, the patients had significant impairment in all QOL aspects, particularly for role and emotional functioning and for symptoms such as eating-related problems, fatigue, insomnia and dyspnea. Majority of patients also reported severe anxiety among family and friends. Among patients with oesophageal cancer those with a palliative treatment strategy, compared with curative strategy, reported significantly lower QOL (mean ± SD, 50.8 ± 28.6 vs 62.0 ± 22.9 p = 0.030), physical (65.5 ± 22.6 vs 83.9 ± 16.5, p < 0.001) and role functioning (55.7 ± 36.6 vs 73.9 ± 33.3, p = 0.012), and a higher burden of several symptoms and problems. No significant differences between treatment groups were shown among patients with gastric cancer., Conclusions: Patients newly diagnosed with oesophageal and gastric cancer, and especially those with incurable oesophageal cancer, have a severely affected QOL and several burdensome symptoms and problems. To better address patients' needs, it seems important to integrate a palliative approach into oesophageal and gastric cancer care., (© 2022. The Author(s).)

Background: Population-based patient reported outcome data in oesophageal cancer are rare. The main purpose of this study was to describe health-related quality of life (HRQOL) 1 year after the diagnosis of oesophageal cancer, comparing subgroups of curatively and palliatively managed patients., Methods: This is a nationwide population-based cohort study, based on the Swedish National Registry for Oesophageal and Gastric Cancer (NREV) with prospectively registered data, including HRQOL instruments from the European Organisation for Research and Treatment of Cancer including the core and disease specific questionnaires (EORTC QLQ-C30 and QLQ-OG25). Patients diagnosed with oesophageal cancer between 2009 and 2016 and with complete HRQOL data at 1 year follow-up were included. HRQOL of included patients was compared to a reference population matched by age and gender to to a previous cohort of unselected Swedish oesophageal cancer patients. Linear regression was performed to calculate mean scores with 95% confidence intervals (CI) and adjusted linear regression analysis was used to calculate mean score differences (MD) with 95% CI., Results: A total of 1156 patients were included. Functions and global health/quality of life were lower in both the curative and palliative cohorts compared to the reference population. Both curatively and palliatively managed patients reported a severe symptom burden compared to the reference population. Patients who underwent surgery reported more problems with diarrhoea compared to those treated with definitive chemoradiotherapy (dCRT) (MD -14; 95% CI - 20 to - 8). Dysphagia was more common in patiens treated with dCRT compared to surgically treated patients (MD 11; 95% CI 4 to 18). Those with palliative intent due to advanced tumour stage reported more problems with dysphagia compared to those with palliative intent due to frailty (MD -18; 95% CI - 33 to - 3)., Conclusions: One year after diagnosis both curative and palliative intent patients reported low function scores and severe symptoms. Dysphagia, choking, and other eating related problems were more pronounced in palliatively managed patients and in the curative intent patients treated with dCRT., (© 2021. The Author(s).)

Background: Patients diagnosed with oesophageal and gastric cancer face a poor prognosis and numerous challenges of symptom management, lifestyle adjustments and complex treatment regimens. The multifaceted care needs and rapid disease progression reinforce the need for proactive and coherent health care. According to the national cancer strategy, providing coherent health care and palliative support is an area of priority. More knowledge is needed about health care utilization and the characteristics of the health care service in order to understand the readiness, accessibility and quality of current health care. The aim of this study was to describe individuals' health care use from the time of treatment decision until death, and investigate the impact of the initial treatment strategy and assignment of a contact nurse (CN) on health care use among patients with oesophageal and gastric cancer., Methods: This population-based cohort study included patients who died from oesophageal and gastric cancer in Sweden during 2014-2016. Through linking data from the National Register for Oesophageal and Gastric Cancer, the National Cause of Death Register, and the National Patient Register, 2614 individuals were identified. Associations between the initial treatment strategy and CN assignment, and health care use were investigated. Adjusted incidence rate ratios (IRRs) with 95% confidence intervals (CIs) were calculated using Poisson regression., Results: Patients receiving palliative treatment and those receiving no tumour-directed treatment had a higher IRR for unplanned hospital stays and unplanned outpatient care visits compared with patients who received curative treatment. Patients receiving no tumour-directed treatment also had a lower IRR for planned hospital stays and planned outpatient care visits compared with patients given curative treatment. Compared with this latter group, patients with palliative treatment had a higher IRR for planned outpatient care visits. Patients assigned a CN had a higher IRR for unplanned hospital stays, unplanned outpatient care visits and planned outpatient care visits, compared with patients not assigned a CN., Conclusions: A palliative treatment strategy and no tumour-directed treatment were associated with higher rates of unplanned health care compared with a curative treatment strategy, suggesting that a proactive approach is imperative to ensure quality palliative care., (© 2021. The Author(s).)

Background: Breast cancer (BC) and related treatment are associated with the risk of developing a wide range of persistent disabling impairments. Despite extensive research in the field and an enhanced focus on BC rehabilitation, up to 34-43% of these patients are at risk of developing chronic distress. In addition, it is known that these patients repeatedly report unmet needs, which are strongly associated with reduced quality of life. However, despite knowledge that patients' needs for support during BC rehabilitation varies greatly, individualized rehabilitation is often lacking. Therefore, this study aimed to explore health care professionals' (HCPs) experiences of current rehabilitation practice and describe current barriers and facilitators for individualized rehabilitation for patients following BC treatment., Methods: A total of 19 HCPs were included, representing various professions in BC care/rehabilitation within surgical, oncological and specialized cancer rehabilitation units at a university hospital in Sweden. Five semi structured focus group interviews were conducted and inductively analysed using conventional qualitative content analysis., Results: Three categories were captured: (1) varying attitudes towards rehabilitation; (2) incongruence in how to identify and meet rehabilitation needs and (3) suboptimal collaboration during cancer treatment. The results showed a lack of consensus in how to optimize individualized rehabilitation. It also illuminated facilitators for individualized rehabilitation in terms of extensive competence related to long-term experience of working with patients with BC care/rehabilitation. Further, the analysis exposed barriers such as a great complexity in promoting individualized rehabilitation in a medically and treatment-driven health care system, which lacked structure and knowledge, and overarching collaboration for rehabilitation., Conclusion: This study suggests that the cancer trajectory is medically and treatment-driven and that rehabilitation plays a marginal role in today's BC trajectory. It also reveals that structures for systematic screening for needs, evidence-based guidelines for individualized rehabilitation interventions and structures for referring patients for advanced rehabilitation are lacking. To enable optimal and individualized recovery for BC patients', rehabilitation needs to be an integrated part of the cancer trajectory and run in parallel with diagnostics and treatment.

Background: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context., Methods: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care., Results: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important., Conclusions: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.

Background: Oesophagectomy is a major procedure with known side effects and reduced postoperative quality of life (QOL). It has been shown that support of patients in their new life situation is often lacking. Knowledge about how QOL changes over time is fundamental for addressing patient needs and for determining the optimal timing of supportive care. The aim of this study was to identify QOL changes over time as well as factors that may impact patient QOL during the first year after oesophagectomy for cancer., Methods: Patients operated on for adenocarcinoma or squamous cell cancer of the oesophagus were included in this study. Seventy-nine patients completed the European Organisation for Research and Treatment of Cancer QOL questionnaires (QLQ-C30 and QLQ-OES18) before and 2, 4, 6, 9, and 12 months after surgery. A general linear model with repeated measurement analysis of variance was used for statistical testing., Results: There was a significant QOL nadir at 2 months compared to 12 months after surgery (QLQ-C30 function scales p < 0.001, symptom scales p < 0.001, QLQ-OES18 scales p < 0.001). Treatment with proton-pump inhibitors was associated with enhanced QOL according to QLQ-C30 symptom scales (p = 0.003) and OES-18 scales (p = 0.015), but age, gender and American Society of Anaesthesiologists classification did not significantly impact QOL., Conclusions: Patient QOL is severely hampered the first year after oesophagectomy for cancer, with a nadir at 2 months after surgery. Treatment with proton-pump inhibitors improved patient responses to symptom scales. Evidence of severely affected QOL after surgery indicates that these patients need support at an early stage after surgery. These results can be used by healthcare professionals to develop a postoperative supportive-care programme that is timed and better optimised to meet patient needs., Trial Registration: EudraCT database 2009-009997-28.