The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial.

BACKGROUND: Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only. METHODS AND ANALYSIS: In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance. DISCUSSION: If proven effective, Carer eSupport has the potential to significantly improve ICs' preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing. TRIAL REGISTRATION: ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

Development and initial psychometric evaluation of a radiotherapy-related symptom assessment tool, based on data from patients with brain tumours undergoing proton beam therapy.

BACKGROUND: Currently, no available tool easily and effectively measures both the frequency, intensity and distress of symptoms among patients receiving radiotherapy. A core symptom set (fatigue, insomnia, pain, appetite loss, cognitive problems, anxiety, nausea, depression, constipation, diarrhoea and skin reaction) has been identified and assessed across oncology research to better understand the pattern of symptoms and treatment side effects. AIM: The aim was to develop a tool measuring the multiple-symptom experience in patients undergoing radiotherapy and evaluate its psychometric properties (validity, reliability and responsiveness). DESIGN: This study has a prospective, longitudinal and quantitative design. METHODS: We developed a patient-reported outcome questionnaire, the Radiotherapy-Related Symptoms Assessment Scale to assess the frequency, intensity and distress associated with symptoms. Patients (n = 175) with brain tumours undergoing proton beam therapy completed the Radiotherapy-Related Symptoms Assessment Scale and the health-related quality of life questionnaire (EORTC QLQ-C30) during treatment. We assessed the validity, reliability and responsiveness of the Radiotherapy-Related Symptoms Assessment Scale and evaluated the validity against QLQ-C30. RESULTS: There were significant questionnaire-questionnaire correlations regarding selected items, primarily fatigue, insomnia and pain, indicating satisfactory criterion-related validity. The Radiotherapy-Related Symptoms Assessment Scale had fair to good retest reliability. CONCLUSION: The Radiotherapy-Related Symptoms Assessment Scale is a valid instrument for assessing symptom intensity and distress in patients with brain tumour undergoing PBT, with psychometric properties within the expected range. The Radiotherapy-Related Symptoms Assessment Scale provides nurses with substantial information on symptom experience but requires little effort from the patient. Additional studies are required to further assess the psychometric properties in patients with different cancer diagnoses receiving conventional radiotherapy.

Nursing students' experiences of a pedagogical transition from campus learning to distance learning using digital tools.

BACKGROUND: The use of distance education using digital tools in higher education has increased over the last decade, particularly during the COVID-19 pandemic. Therefore, this study aimed to describe and evaluate nursing students' experiences of the pedagogical transition from traditional campus based learning to distance learning using digital tools. METHODS: The nursing course Symptom and signs of illness underwent a transition from campus based education to distance learning using digital tools because of the COVID-19 pandemic. This pedagogical transition in teaching was evaluated using both quantitative and qualitative data analysis. Focus group interviews (n = 9) were analysed using qualitative content analysis to explore students' experiences of the pedagogical transition and to construct a web-based questionnaire. The questionnaire comprised 14 items, including two open-ended questions. The questionnaire was delivered to all course participants and responses were obtained from 96 of 132 students (73%). Questionnaire data were analyzed using descriptive statistics and comments from the open-ended questions were used as quotes to highlight the quantitative data. RESULTS: The analysis of the focus group interviews extracted three main dimensions: didactic aspects of digital teaching, study environment, and students' own resources. Social interaction was an overall theme included in all three dimensions. Data from the questionnaire showed that a majority of students preferred campus based education and experienced deterioration in all investigated dimensions after the pedagogical transition. However, approximately one-third of the students appeared to prefer distance learning using digital tools. CONCLUSIONS: The main finding was that the pedagogical transition to distance education reduced the possibility for students' social interactions in their learning process. This negatively affected several aspects of their experience of distance learning using digital tools, such as reduced motivation. However, the heterogeneity in the responses suggested that a blended learning approach may offer pedagogical benefits while maintaining an advantageous level of social interaction.

Patients' perspective in the context of proton beam therapy: summary of a Nordic workshop.

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.

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.

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 6 weeks. Adult patients (≥ 18 years 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.

Positive Design Framework for Carer eSupport: Qualitative Study to Support Informal Caregivers of Patients With Head and Neck Cancer in Sweden.

BACKGROUND: Informal caregivers of patients with head and neck cancer (HNC), such as the patient's spouse, other close relatives, or friends, can play an important role in home-based treatment and health care. Research shows that informal caregivers are usually unprepared for this responsibility and need support with taking care of patients and other daily life activities. These circumstances place them in a vulnerable position, and their well-being may be compromised. This study is part of our ongoing project Carer eSupport, which aims to develop a web-based intervention to facilitate informal caregivers in the home environment. OBJECTIVE: This study aimed to explore the situation and context of informal caregivers of patients with HNC and their needs for designing and developing a web-based intervention (Carer eSupport). In addition, we proposed a novel framework for the development of a web-based intervention aimed at promoting the well-being of informal caregivers. METHODS: Focus groups were conducted with 15 informal caregivers and 13 health care professionals. Both informal caregivers and health care professionals were recruited from 3 university hospitals in Sweden. We adopted a thematic data analysis process to analyze the data. RESULTS: We investigated informal caregivers' needs, critical factors for adoption, and desired functionalities of Carer eSupport. A total of 4 major themes, including information, web-based forum, virtual meeting place, and chatbot, emerged and were discussed by informal caregivers and health care professionals for Carer eSupport. However, most study participants did not like the idea of a chatbot for asking questions and retrieving information and expressed their concerns such as a lack of trust in robotic technologies and missing human contact while communicating with chatbots. The results from the focus groups were discussed through the lens of positive design research approaches. CONCLUSIONS: This study provided an in-depth understanding of informal caregivers' contexts and their preferred functions for a web-based intervention (Carer eSupport). Using the theoretical foundation of designing for well-being and positive design in the informal caregiving context, we proposed a positive design framework to support informal caregivers' well-being. Our proposed framework might be helpful for human-computer interaction and user experience researchers to design meaningful eHealth interventions with a clear focus on users' well-being and positive emotions, especially for informal caregivers of patients with HNC. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2021-057442.

Understanding the challenges and need for support of informal caregivers to individuals with head and neck cancer - A basis for developing internet-based support.

PURPOSE: Being an informal caregiver of an individual with head and neck cancer can be demanding. Still, informal caregivers can provide valuable support to patients throughout the disease trajectory. The aim of this study was to explore informal caregivers' views on their challenges and needs in attaining high preparedness for caregiving. METHODS: Fifteen informal caregivers of individuals with head- and neck cancer participated in a focus group discussion or an individual interview. Thematic analysis utilizing an inductive approach was performed. RESULTS: The results describe the challenges that informal caregivers to individuals with head and neck cancer perceive and their needs for support in preparedness for caregiving. Three main themes were found: Challenges of being an informal caregiver, Transformation in life and Informal caregiver' needs of support and sharing care. CONCLUSION: This study contributes to the understanding of the challenges for informal caregivers to individuals with head and neck cancer in increasing preparedness for caregiving. To improve preparedness for caregiving, informal caregivers need education, information and support regarding physical, psychological and social issues for individuals with head and neck cancer.

Designing for Human Well-Being: A Case Study with Informal Caregivers of Individuals with Cancer.

Informal Caregivers such as a spouse, other close relatives or friends of cancer patients can play an essential role in home-based treatment and care. However, the informal caregivers might not be prepared for this responsibility, and they might have several unmet requirements for taking care of patients in the home environment. The informal caregivers' physical, social and psychological health is also profoundly affected due to the health conditions of their relatives. We propose a User-centred Positive Design as a hybrid framework by merging the traditional User-cantered design and positive design frameworks to enhance the informal caregivers' subjective well-being. Our ongoing project (Carer-eSupport) will be used as a case study, and its main objective is to co-create and evaluate a web-based support system for informal caregivers of people with cancer. The proposed framework can be used for the design and development of health information systems with a special focus on users' wellbeing and positive emotions.

Internet-based support for informal caregivers to individuals with head and neck cancer (Carer eSupport): a study protocol for the development and feasibility testing of a complex online intervention.

INTRODUCTION: It is strongly recommended that randomised controlled trials are preceded with an exploration of the needs of the target population and feasibility testing of the intervention. The present study protocol is set out to describe these steps in the development of a complex intervention.The past decades' transition of care from inpatient to outpatient settings has increased the complexity of caregivers' responsibilities, which they may not be prepared for. There is a need to support informal caregivers (ICs) to prepare them for caregiving and decrease the caregiver burden. The main aim of this study is to describe the development of an internet-based intervention (Carer eSupport) to improve ICs' ability to support individuals with head and neck cancer and to describe the testing of the feasibility and acceptability of Carer eSupport. METHODS AND ANALYSIS: This is a multicentre study involving the ear, nose and throat clinics and the oncology and radiotherapy clinics at three university hospitals. The study protocol comprises two phases, development and feasibility testing, using the Medical Research Council framework for developing a complex intervention. Carer eSupport will be based on the results from focus group discussions with ICs and healthcare professionals (planned for n=6-8 in respective groups) and scientific evidence, the Social Cognitive Theory and the Theory of Acceptance and Use of Technology. The feasibility testing will include 30 ICs who will have access to Carer eSupport for 1 month. The feasibility testing will be evaluated with a mixed-method design. ETHICS AND DISSEMINATION: All procedures have been approved by the Ethics Committee at Uppsala University (Dnr: 2020-04650). Informed consent will be obtained before enrolment of patients, their ICs and healthcare staff. The feasibility testing is registered at Clinicaltrials.gov (Identifier: NCT05028452). Findings will be disseminated in peer-reviewed journal publications. TRIAL REGISTRATION NUMBER: Clinicaltrials.gov (Identifier: NCT05028452).

Evaluation of skin reactions during proton beam radiotherapy - Patient-reported versus clinician-reported.

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.

Health-related quality of life in patients with primary brain tumors during and three months after treatment with proton beam therapy.

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.

The Art of Living With Symptoms: A Qualitative Study Among Patients With Primary Brain Tumors Receiving Proton Beam Therapy.

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.

Managing an altered social context-Patients experiences of staying away from home while undergoing proton beam therapy.

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.

Symptom Clusters in Patients With Brain Tumors Undergoing Proton Beam Therapy.

OBJECTIVES: To explore symptom clusters during proton beam therapy in patients with primary brain tumors and investigate associations among symptom clusters, demographic variables, and comorbidity in this patient population. SAMPLE & SETTING: Data were collected from 187 adult patients with primary brain tumors during their treatment periods in the Skandion Clinic in Uppsala, Sweden. Symptoms were assessed with the Radiotherapy-Related Symptoms Assessment Scale, and comorbidity was evaluated with the Self-Administered Comorbidity Questionnaire. METHODS & VARIABLES: The study used a quantitative and longitudinal design. Exploratory factor analysis was used to determine the underlying structure of symptom clusters. RESULTS: Three clusters were identified. IMPLICATIONS FOR NURSING: Building knowledge about how these symptoms interact and are clustered will support healthcare professionals to more efficiently relieve symptom clusters during proton beam therapy.

Consolation in conjunction with incurable cancer.

PURPOSE/OBJECTIVES: To increase knowledge of what patients with incurable cancer have found consoling during the course of the disease. DESIGN: Descriptive, cross-sectional analysis. SETTING: Hospice in western Sweden. SAMPLE: 10 patients (8 women, 2 men) aged 30-90 years. METHODS: Data were collected through semistructured interviews and analyzed with the constant comparative method of analysis. FINDINGS: Four categories emerged from the interview data: connection, self-control, affirmation, and acceptance. The core variable of the study was developed and defined as "being seen." To be seen and, therefore, consoled results from experiencing a sense of connection, self-control, affirmation, and acceptance. To be consoled is a step toward increased well-being. When patients feel their suffering is seen and understood by another person, they are filled with relief. CONCLUSIONS: Raising the issue of consolation and what consolation means to the patient is essential. Physical contact is not as important as mental presence. The act of listening is the most important factor when it comes to being seen, and what the nurse communicates is what defines the patient/nurse relationship. Nurses should be clear that they have the time and interest to deal with the patient. In addition, a nurse who is concerned with patients and has the courage to stay with them during difficult situations develops an attitude marked by presence, understanding, and commitment. Creativity, knowledge, and, most of all, courage are needed from the nurse as a caregiver to recognize the patient's need for consolation. Creativity and knowledge are needed to determine what point the patient has reached, and courage is needed to be present with the patient during difficult times. Results show that the caregiver, without having an established long-term relationship with the patient, can still bring consolation to the patient. IMPLICATIONS FOR NURSING: Creativity, knowledge, and courage are needed to comprehend and accept a patient's need for consolation. By using simple interventions, the nurse can console the patient with little effort. Words become less important when consolation is done through body language.