BACKGROUND Patients with high-grade gliomas (HGG) face a difficult decision when the tumor recurs... more BACKGROUND Patients with high-grade gliomas (HGG) face a difficult decision when the tumor recurs. There are no curable treatments, and all palliative treatment options include risks of complications and adverse effects. In this situation, support is needed for patients to navigate between these trade-offs and make preference-sensitive decisions. Shared decision making (SDM) is an approach where a decision is made in collaboration between a clinician and a patient by combining the clinician’s scientific evidence and knowledge with the patient’s subjective values and preferences. SDM aims to make quality decisions congruent with the individual patient’s informed preferences and to support patients in the decisional process. Patient decision aids (PtDA’s) have proven to be an efficient tool for facilitating SDM. However, there are no PtDA’s available for patients with recurrent HGG. This study aimed to develop a PtDA in a co-creation process with patients with recurrent HGG and family...
Background When a person is diagnosed with a brain tumor everyday life change completely. Patient... more Background When a person is diagnosed with a brain tumor everyday life change completely. Patients experience severe and fluctuating symptoms and the relatives often become informal caregivers. Together they seek to manage the symptoms and maintain quality in daily living. Especially, cognitive impairments are difficult to manage and often associated with stigma. The purpose of this project was to create awareness and share knowledge about the challenges experienced by those living with a brain tumor and their informal caregivers. The creation of the films was chosen to be an appropriate medium to reach our targeted public population. Even though film cuts are time-consuming with several costs to produce, they have a beneficial perspective. Among the advantages of this media is that film cuts are easy to access and understand, simple to share on social media, and addresses universal and population-specific problems and concerns making the audience wide ranging. Thereby, the film cut...
Background A diagnosis of a malignant brain tumour represents a fearful event for patients, often... more Background A diagnosis of a malignant brain tumour represents a fearful event for patients, often followed by severe physical, cognitive, emotional, and psychosocial impairments. In turn, being a family member and an informal caregiver of a person with an oncological disease is also a burdensome experience. Family and network can influence patient outcomes, and family-centred intervention may help both patients and caregivers to face illness-related issues. However, studies aiming at implementing family-centered interventions in patients with high grade glioma (HGG) and their families are scarce. Therefore, this study aims to understand how patients with HGG and their families experienced the course of illness and investigate the impact of family and network consultations (FNCs) on both of them. Material and Methods We adopted a quasi-experimental feasibility study using a longitudinal mixed-methods design. The intervention consisted of three FNCs delivered over a 1-year period. Qua...
BACKGROUND Most cancer treatments today take place in outpatient clinics; however, it might be ne... more BACKGROUND Most cancer treatments today take place in outpatient clinics; however, it might be necessary for some patients to be admitted to hospital departments due to severe side effects or complications. In such situations, support from family and social relations can be crucial for the patients’ emotional well-being. Many young adolescents and children whose parents have cancer describe how they are not seen, heard, or listened to as the worried relatives they are. Within the intensive care unit, it has been recommended that early supportive interventions are tailored to include children of the intensive care patient; a similar approach might be relevant in the oncological setting. To our knowledge, no studies have explored how to involve young relatives who are visiting their parent at an oncological department. Recently, a framework for developing theory-driven, evidence-based serious games for health has been suggested. Such a process would include stakeholders from various d...
Background Caregivers to patients with primary brain tumors often play a vital role in the direct... more Background Caregivers to patients with primary brain tumors often play a vital role in the direct care and support of the patient. Great responsibility is placed on their shoulders to manage practicalities during the cancer trajectory. Caregivers are asked to carry out procedures, report patient-related evaluations, coordinate care and treatment and deliver proper information to the healthcare providers. Hence, they tend to neglect their own physical and emotional needs as they priorities other tasks including financial issues, household and work while coping with family adjustment. Caregivers of patients with brain tumors experience a high level of burden and distress. It is shown in literature that caregiver interventions can reduce caregiver burden, distress and anxiety, and improve coping, relationships and physical functioning Aim: The aim of this study is to offer caregivers to join a caregiver café at the neuro-oncological department to 1) relax, meet and support each other, ...
Background Most cancer treatments today take place in outpatient clinics; however, it might be ne... more Background Most cancer treatments today take place in outpatient clinics; however, it might be necessary for some patients to be admitted to hospital departments due to severe side effects or complications. In such situations, support from family and social relations can be crucial for the patients’ emotional well-being. Many young adolescents and children whose parents have cancer describe how they are not seen, heard, or listened to as the worried relatives they are. Within the intensive care unit, it has been recommended that early supportive interventions are tailored to include children of the intensive care patient; a similar approach might be relevant in the oncological setting. To our knowledge, no studies have explored how to involve young relatives who are visiting their parent at an oncological department. Recently, a framework for developing theory-driven, evidence-based serious games for health has been suggested. Such a process would include stakeholders from various d...
Background Optimal management of symptoms is essential for the patientś adherence to the treatmen... more Background Optimal management of symptoms is essential for the patientś adherence to the treatment schedule and quality of life. Nurses can play a crucial role in identifying the patient’s symptoms, side effects, needs and to provide support and guidance during treatment. At the Department of Oncology we replaced physician-led consultations with systematic nurse-led consultations. This study seeks to evaluate the feasibility of systematic nurse-led consultations among patients with cervical, vulvar or vaginal cancer during radiotherapy prior to the weekly treatment with cisplatin. Methods This pilot study aimed to evaluate the feasibility, acceptability and safety from systematic nurse-led consultations among patients receiving curative concurrent chemotherapy. Patients who participated in minimum 4-6 nurse-led consultations responded to a self-developed questionnaire evaluating the consultations. The questionnaire consisted of 21 items on a 5-point Likert scale and ranged from very...
Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG)... more Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n = 30) and their caregivers (n = 33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to redefine hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management.
with operable NSCLC who participated in an exercise programme (the PROLUCA study) post-surgery. M... more with operable NSCLC who participated in an exercise programme (the PROLUCA study) post-surgery. Method: Nineteen patients enrolled in an exercise intervention two weeks post-surgery participated in qualitative interviews at three time points. A phenomenological hermeneutical approach comprised the epistemological stance and the methodological basis was Ricoeur's narrative philosophy. The goal of the analysis and interpretation was to provide descriptions that captured the meaning of the lived experiences of the patients. Result: Patients included in this qualitative study had a mean age of 63 years (range 48-75), 58% were female, and 68% was retired. Eighty-four percent had performance status 0 (WHO) and almost all patients were used to some kind of physical activity. The analysis revealed social benefits of taking part in the group-based exercise intervention. The patients experienced themselves as part of a community, and the physical exercise intervention was significant in terms of the patients' social capital. In this sense, patients gained access to resources that derived from human interaction in the exercise group, and their illness and treatment became easier to manage when shared with others in the same situation. The exercise intervention helped to create a community for patients after lung cancer surgery, and the patients experienced a feeling of belonging and equality with the other participants. Conclusion: The group based exercise intervention created opportunities for mutual understanding between patients, making illness and treatment easier to manage. The patients experienced support to gain renewed balance in life during the exercise intervention in the interaction with peers in the group. It is relevant to inform operable NSCLC patients about the potential community of understanding and belonging in group-based exercise interventions.
High-grade gliomas (HGGs) are the most malignant type of brain tumours. The 5-year survival is 10... more High-grade gliomas (HGGs) are the most malignant type of brain tumours. The 5-year survival is 10% and a significant part of the ongoing research aims to increase survival through surgical and oncological treatments. Accordingly, there is an increasing need for investigating the HGG trajectory in order to recommend specific guidelines for rehabilitative and supportive interventions. This study protocol (phase I) describes a longitudinal, qualitative, explorative and descriptive interview study of the life situation and need for rehabilitation among patients and their caregivers and a quantitative evaluation of health-related quality of life. Qualitative and quantitative data are collected in parallel, analysed separately and then merged. The finding of this study will, together with the existing literature, form the background for phase II, which is a feasibility study with a pre-experimental one-group design testing a rehabilitative and supportive intervention programme. The aim of...
The diagnosis of a high-grade glioma usual is followed by functional impairment(s), cognitive dec... more The diagnosis of a high-grade glioma usual is followed by functional impairment(s), cognitive decline and an impaired psycho-social well-being. This might well have a significant and negative impact on the health related quality of life. The purpose of this study was to explore physical activity levels, prevalence and severity of anxiety and depressive symptoms and health-related quality of life among patients with a highgrade glioma. This paper is based on a longitudinal mixed methods study. Patients (n = 30) completed questionnaires at 5 time points from time of diagnosis until the final follow-up after 1 year. Scores of Karnofsky Performance Status (KPS), physical activity, anxiety and depression and health-related quality of life (FACT-Br) are obtained. Patients' physical activity level and KPS decrease during the disease- and treatment trajectory. The majority of patients did not report any depressive symptoms, eight individuals (26.7 %) being depressed at various time poin...
Patients diagnosed with high-grade gliomas experience a varying and complex symptom burden, and f... more Patients diagnosed with high-grade gliomas experience a varying and complex symptom burden, and face a high mortality rate. As a consequence, patients with high-grade gliomas and their caregivers have imminent and changing rehabilitative and supportive care needs. To give a detailed overview of non-pharmacological rehabilitative and supportive care interventions for patients with high-grade gliomas and/or their caregivers, and provide an appraisal of the methodological quality of these studies. PubMed, Cumulative Index of Nursing and Allied Health Literature and Embase were searched for literature published from 1995 to May 2013. Data from eight studies were reviewed for substantive methods and results. Methodological quality was described and assessed using the scoring system for appraising mixed methods research and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed study reviews. The search yielded 914 unique publications, of which 9 wer...
BACKGROUND Patients with high-grade gliomas (HGG) face a difficult decision when the tumor recurs... more BACKGROUND Patients with high-grade gliomas (HGG) face a difficult decision when the tumor recurs. There are no curable treatments, and all palliative treatment options include risks of complications and adverse effects. In this situation, support is needed for patients to navigate between these trade-offs and make preference-sensitive decisions. Shared decision making (SDM) is an approach where a decision is made in collaboration between a clinician and a patient by combining the clinician’s scientific evidence and knowledge with the patient’s subjective values and preferences. SDM aims to make quality decisions congruent with the individual patient’s informed preferences and to support patients in the decisional process. Patient decision aids (PtDA’s) have proven to be an efficient tool for facilitating SDM. However, there are no PtDA’s available for patients with recurrent HGG. This study aimed to develop a PtDA in a co-creation process with patients with recurrent HGG and family...
Background When a person is diagnosed with a brain tumor everyday life change completely. Patient... more Background When a person is diagnosed with a brain tumor everyday life change completely. Patients experience severe and fluctuating symptoms and the relatives often become informal caregivers. Together they seek to manage the symptoms and maintain quality in daily living. Especially, cognitive impairments are difficult to manage and often associated with stigma. The purpose of this project was to create awareness and share knowledge about the challenges experienced by those living with a brain tumor and their informal caregivers. The creation of the films was chosen to be an appropriate medium to reach our targeted public population. Even though film cuts are time-consuming with several costs to produce, they have a beneficial perspective. Among the advantages of this media is that film cuts are easy to access and understand, simple to share on social media, and addresses universal and population-specific problems and concerns making the audience wide ranging. Thereby, the film cut...
Background A diagnosis of a malignant brain tumour represents a fearful event for patients, often... more Background A diagnosis of a malignant brain tumour represents a fearful event for patients, often followed by severe physical, cognitive, emotional, and psychosocial impairments. In turn, being a family member and an informal caregiver of a person with an oncological disease is also a burdensome experience. Family and network can influence patient outcomes, and family-centred intervention may help both patients and caregivers to face illness-related issues. However, studies aiming at implementing family-centered interventions in patients with high grade glioma (HGG) and their families are scarce. Therefore, this study aims to understand how patients with HGG and their families experienced the course of illness and investigate the impact of family and network consultations (FNCs) on both of them. Material and Methods We adopted a quasi-experimental feasibility study using a longitudinal mixed-methods design. The intervention consisted of three FNCs delivered over a 1-year period. Qua...
BACKGROUND Most cancer treatments today take place in outpatient clinics; however, it might be ne... more BACKGROUND Most cancer treatments today take place in outpatient clinics; however, it might be necessary for some patients to be admitted to hospital departments due to severe side effects or complications. In such situations, support from family and social relations can be crucial for the patients’ emotional well-being. Many young adolescents and children whose parents have cancer describe how they are not seen, heard, or listened to as the worried relatives they are. Within the intensive care unit, it has been recommended that early supportive interventions are tailored to include children of the intensive care patient; a similar approach might be relevant in the oncological setting. To our knowledge, no studies have explored how to involve young relatives who are visiting their parent at an oncological department. Recently, a framework for developing theory-driven, evidence-based serious games for health has been suggested. Such a process would include stakeholders from various d...
Background Caregivers to patients with primary brain tumors often play a vital role in the direct... more Background Caregivers to patients with primary brain tumors often play a vital role in the direct care and support of the patient. Great responsibility is placed on their shoulders to manage practicalities during the cancer trajectory. Caregivers are asked to carry out procedures, report patient-related evaluations, coordinate care and treatment and deliver proper information to the healthcare providers. Hence, they tend to neglect their own physical and emotional needs as they priorities other tasks including financial issues, household and work while coping with family adjustment. Caregivers of patients with brain tumors experience a high level of burden and distress. It is shown in literature that caregiver interventions can reduce caregiver burden, distress and anxiety, and improve coping, relationships and physical functioning Aim: The aim of this study is to offer caregivers to join a caregiver café at the neuro-oncological department to 1) relax, meet and support each other, ...
Background Most cancer treatments today take place in outpatient clinics; however, it might be ne... more Background Most cancer treatments today take place in outpatient clinics; however, it might be necessary for some patients to be admitted to hospital departments due to severe side effects or complications. In such situations, support from family and social relations can be crucial for the patients’ emotional well-being. Many young adolescents and children whose parents have cancer describe how they are not seen, heard, or listened to as the worried relatives they are. Within the intensive care unit, it has been recommended that early supportive interventions are tailored to include children of the intensive care patient; a similar approach might be relevant in the oncological setting. To our knowledge, no studies have explored how to involve young relatives who are visiting their parent at an oncological department. Recently, a framework for developing theory-driven, evidence-based serious games for health has been suggested. Such a process would include stakeholders from various d...
Background Optimal management of symptoms is essential for the patientś adherence to the treatmen... more Background Optimal management of symptoms is essential for the patientś adherence to the treatment schedule and quality of life. Nurses can play a crucial role in identifying the patient’s symptoms, side effects, needs and to provide support and guidance during treatment. At the Department of Oncology we replaced physician-led consultations with systematic nurse-led consultations. This study seeks to evaluate the feasibility of systematic nurse-led consultations among patients with cervical, vulvar or vaginal cancer during radiotherapy prior to the weekly treatment with cisplatin. Methods This pilot study aimed to evaluate the feasibility, acceptability and safety from systematic nurse-led consultations among patients receiving curative concurrent chemotherapy. Patients who participated in minimum 4-6 nurse-led consultations responded to a self-developed questionnaire evaluating the consultations. The questionnaire consisted of 21 items on a 5-point Likert scale and ranged from very...
Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG)... more Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n = 30) and their caregivers (n = 33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to redefine hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management.
with operable NSCLC who participated in an exercise programme (the PROLUCA study) post-surgery. M... more with operable NSCLC who participated in an exercise programme (the PROLUCA study) post-surgery. Method: Nineteen patients enrolled in an exercise intervention two weeks post-surgery participated in qualitative interviews at three time points. A phenomenological hermeneutical approach comprised the epistemological stance and the methodological basis was Ricoeur's narrative philosophy. The goal of the analysis and interpretation was to provide descriptions that captured the meaning of the lived experiences of the patients. Result: Patients included in this qualitative study had a mean age of 63 years (range 48-75), 58% were female, and 68% was retired. Eighty-four percent had performance status 0 (WHO) and almost all patients were used to some kind of physical activity. The analysis revealed social benefits of taking part in the group-based exercise intervention. The patients experienced themselves as part of a community, and the physical exercise intervention was significant in terms of the patients' social capital. In this sense, patients gained access to resources that derived from human interaction in the exercise group, and their illness and treatment became easier to manage when shared with others in the same situation. The exercise intervention helped to create a community for patients after lung cancer surgery, and the patients experienced a feeling of belonging and equality with the other participants. Conclusion: The group based exercise intervention created opportunities for mutual understanding between patients, making illness and treatment easier to manage. The patients experienced support to gain renewed balance in life during the exercise intervention in the interaction with peers in the group. It is relevant to inform operable NSCLC patients about the potential community of understanding and belonging in group-based exercise interventions.
High-grade gliomas (HGGs) are the most malignant type of brain tumours. The 5-year survival is 10... more High-grade gliomas (HGGs) are the most malignant type of brain tumours. The 5-year survival is 10% and a significant part of the ongoing research aims to increase survival through surgical and oncological treatments. Accordingly, there is an increasing need for investigating the HGG trajectory in order to recommend specific guidelines for rehabilitative and supportive interventions. This study protocol (phase I) describes a longitudinal, qualitative, explorative and descriptive interview study of the life situation and need for rehabilitation among patients and their caregivers and a quantitative evaluation of health-related quality of life. Qualitative and quantitative data are collected in parallel, analysed separately and then merged. The finding of this study will, together with the existing literature, form the background for phase II, which is a feasibility study with a pre-experimental one-group design testing a rehabilitative and supportive intervention programme. The aim of...
The diagnosis of a high-grade glioma usual is followed by functional impairment(s), cognitive dec... more The diagnosis of a high-grade glioma usual is followed by functional impairment(s), cognitive decline and an impaired psycho-social well-being. This might well have a significant and negative impact on the health related quality of life. The purpose of this study was to explore physical activity levels, prevalence and severity of anxiety and depressive symptoms and health-related quality of life among patients with a highgrade glioma. This paper is based on a longitudinal mixed methods study. Patients (n = 30) completed questionnaires at 5 time points from time of diagnosis until the final follow-up after 1 year. Scores of Karnofsky Performance Status (KPS), physical activity, anxiety and depression and health-related quality of life (FACT-Br) are obtained. Patients' physical activity level and KPS decrease during the disease- and treatment trajectory. The majority of patients did not report any depressive symptoms, eight individuals (26.7 %) being depressed at various time poin...
Patients diagnosed with high-grade gliomas experience a varying and complex symptom burden, and f... more Patients diagnosed with high-grade gliomas experience a varying and complex symptom burden, and face a high mortality rate. As a consequence, patients with high-grade gliomas and their caregivers have imminent and changing rehabilitative and supportive care needs. To give a detailed overview of non-pharmacological rehabilitative and supportive care interventions for patients with high-grade gliomas and/or their caregivers, and provide an appraisal of the methodological quality of these studies. PubMed, Cumulative Index of Nursing and Allied Health Literature and Embase were searched for literature published from 1995 to May 2013. Data from eight studies were reviewed for substantive methods and results. Methodological quality was described and assessed using the scoring system for appraising mixed methods research and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed study reviews. The search yielded 914 unique publications, of which 9 wer...
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