The Role of Researcher for Advanced Practice Nurses in Oncology: Challenges and Lessons Learned.

OBJECTIVES: To reflect on current practice analyses regarding the role of advanced practice nurse (APN) researcher in oncology, and report on the challenges that were faced and lessons we have learned when intensively working with APNs on doing research within the domain of oncology. METHODS: Discussions with APNs supervised by or who collaborated with academics in nursing science during the past 10 years on doing research within the domain of oncology. RESULTS: Several misconceptions exist regarding the role of APNs as researchers. During the research process, APNs are confronted with a wide range of topics based on evidence gaps and unmet needs, challenges linked to specific research designs, and ethical issues. APNs also face challenges related to the dissemination of research. This step in the research process is often overlooked due to APNs' lack of time, limited financial resources, insufficient support for academic writing, or lower priority for APNs and other healthcare providers. CONCLUSION: The APN role of researcher in oncology is fundamental for the advancement of oncology nursing care, implementation of evidence-based practice and innovations in oncology patient care, and further development of the nursing profession and nursing science. Participation in research is considered a main function that differentiates APNs from nurses in other clinical roles, such as specialized nurses. By embracing the role of researcher, oncology APNs can achieve professional growth that will stimulate them as an APN, open new opportunities, and keep them challenged. IMPLICATIONS FOR NURSING PRACTICE: In addition to APN, organizational and structural related factors, support by relevant stakeholders, partnering with (nursing) research units and professional and patient organizations, and dedicated time for research can positively influence uptake of the APN researcher role.

Self-reported electronic symptom monitoring in older patients with multimorbidity treated for cancer: Development of a core dataset based on expert consensus, literature review, and quality of life questionnaires.

INTRODUCTION: In cancer care, symptom monitoring during treatment results in improved clinical outcomes such as improved quality of life, longer survival, and fewer hospital admissions. However, as the majority of patients with cancer are older and have multimorbidity, they may benefit from monitoring of additional symptoms. The aim of this study was to identify a core set of symptoms to monitor in older patients with multimorbidity treated for cancer, including symptoms caused by treatment side effects, destabilization of comorbidities, and functional decline. MATERIALS AND METHODS: During a scoping literature search, 17 quality of life questionnaires were used to select 53 possible symptoms to monitor. An expert panel of cancer and geriatrics specialists was asked to participate in multiple online surveys to indicate whether these symptoms were not relevant to monitor, only relevant to monitor in a specific patient group, or relevant to monitor in all patients. In a subsequent round the list was reduced and the panel indicated how frequently these symptoms should be monitored during cancer treatment and after cancer treatment completion. Finally, a digital consensus meeting was organised to decide when symptoms had to trigger a recommendation to the patient to get in touch with their medical team. RESULTS: In total, 30 healthcare professionals participated in the online surveys. After two rounds, a dataset of 19 symptoms related to cancer, cancer treatment, functional decline, and destabilization of comorbidities was agreed upon for monitoring. Five symptoms were selected for daily monitoring during treatment, seven for weekly, and seven for monthly. After treatment completion, the panel agreed upon less frequent reporting. Additionally, nine symptoms to be monitored only in patients with specific cancer types or treatment types were chosen, such as "cough up blood" in lung cancer. DISCUSSION: This study is the first to identify a core set of symptoms to monitor in older patients with multimorbidity treated for cancer. Future research is needed to investigate whether the monitoring of these symptoms is feasible and improves clinical outcomes in older patients with multimorbidity treated for cancer.

The use of electronic Patient Reported Outcomes in follow-up after palliative radiotherapy: A survey study in Belgium.

Objective: Electronic Patient-Reported Outcome Measures (ePROMs) could be used to monitor patients' symptoms after treatment. However, ePROM implementation in clinical practice has been challenging, especially in (palliative) radiation oncology. The aim of this study was to explore the opinions of healthcare providers (HCP) active in radiation oncology in Belgium on the use of ePROMs for symptom follow-up after palliative radiotherapy. Methods: An anonymous online survey was conducted with different HCP in radiation oncology in Belgium. Participants were recruited through several professional organizations with approximately 390 members actively working in the field of radiation oncology. The survey used was a self-developed questionnaire, based on existing literature on implementation of (e)PROMs in cancer care, our previous research on this topic as well as our personal experience in the field of oncology and palliative care. Results: Of the 128 respondents, 26% had experience with ePROMs in clinical practice. Eighty-four percent considered ePROMs beneficial for patients' health and symptom knowledge, symptom self-management and active participation in care. ePROMs could help HCP to focus on detection of relevant symptoms and improve their management. Almost 75% were willing to implement and use ePROMs. Assigning ePROM introduction and follow-up to a dedicated person, such as a nurse navigator, was suggested to promote ePROM implementation and use in clinical practice. Conclusion: Despite limited experience with ePROMs in clinical care for palliative radiotherapy patients, the majority of respondents is willing to implement and use ePROMs for this particular patient population. Innovation: This is one of the first studies specifically focusing on experiences and opinions of HCP in radiation oncology on the use of ePROMs for symptom follow-up in palliative radiotherapy. HCP should be actively involved in implementation of ePROMs after palliative radiotherapy, to translate their vision of their ideals in practice.

A Narrative Review on the Collection and Use of Electronic Patient-Reported Outcomes in Cancer Survivorship Care with Emphasis on Symptom Monitoring.

Electronic patient-reported outcome (ePRO) applications promise great added value for improving symptom management and health-related quality of life. The aim of this narrative review is to describe the collection and use of ePROs for cancer survivorship care, with an emphasis on ePRO-symptom monitoring. It offers many different perspectives from research settings, while current implementation in routine care is ongoing. ePRO collection optimizes survivorship care by providing insight into the patients' well-being and prioritizing their unmet needs during the whole trajectory from diagnosis to end-of-life. ePRO-symptom monitoring can contribute to timely health risk detection and subsequently allow earlier intervention. Detection is optimized by automatically generated alerts that vary from simple to complex and multilayered. Using ePRO-symptoms during in-hospital consultation enhances the patients' conversation with the health care provider before making informed decisions about treatments, other interventions, or self-management. ePRO(-symptoms) entail specific implementation issues and complementary ethics considerations. The latter is due to privacy concerns, digital divide, and scarcity of adequately representative data for particular groups of patients.

Preventing taxane-related peripheral neuropathy, pain and nail toxicity: a prospective self-controlled trial comparing hilotherapy with frozen gloves in early breast cancer.

PURPOSE: The prevention of taxane-related toxicities at the extremities is highly important for patients' treatment and quality-of-life. Several studies endorse hand/foot-cooling using frozen gloves as a prophylactic intervention. Unlike frozen gloves, hilotherapy produces cooling at a constant temperature. Comparative data with frozen gloves are unavailable. METHODS: This prospective self-controlled study explores the efficacy of hilotherapy at the right hand and foot compared to frozen gloves at the left in patients with early breast cancer treated with weekly paclitaxel 80 mg/m2 or three-weekly docetaxel 75 mg/m2. Patient-reported outcomes were collected at baseline, 6, 12, 18 and 24 weeks after the start of treatment. Primary and secondary endpoints were the incidence of any-grade and ≥ grade 2 side-effects (peripheral neuropathy, pain and nail toxicities), and perceived comfort of both interventions. RESULTS: Sixty-two patients participated. The incidence of any-grade side-effects was similar on both sides, 85.5% with hilotherapy and 90.3% with frozen gloves (p = 1.000). The incidence of ≥ grade 2 side-effects at the extremities was significantly lower with hilotherapy: 43.6% compared to 61.3% with frozen gloves (p = 0.013). Perceived comfort was significantly better for hilotherapy than for frozen gloves (p < 0.0001). CONCLUSIONS: Compared to frozen gloves, continuous cooling of hands and feet using hilotherapy produces better prevention of ≥ grade 2 patient-reported side-effects at the extremities (peripheral neuropathy, pain and nail toxicities). Perceived comfort was significantly better for hilotherapy. From a clinical and patient perspective, hilotherapy is a better alternative for preventing clinically significant taxane-related side-effects.

Remote System for Daily Symptom Monitoring During Systemic Anticancer Treatment: Patient Acceptance, Usability, and Compliance.

BACKGROUND: Electronic systems for remotely monitoring symptoms during cancer treatment are increasingly being used. Most of them are intended for weekly or periodic symptom monitoring. OBJECTIVE: The aim of this study was to explore the feasibility and usability of a remote system for daily symptom monitoring during systemic anticancer treatment. METHODS: We offered a remote system for daily symptom monitoring to patients starting their first ever systemic therapy. Patient acceptance was observed as the proportion of patients showing interest in using the system. System users were invited to complete the "Health information Technology Usability Evaluation Scale," and the number of patients' self-reports was used to evaluate patient compliance. RESULTS: Of 465 patients, 239 (51.4%) showed interest in using the system; 111 system users reported a fairly good overall usability score (4 of 5), and perceived ease of use scored the highest (4.7 of 5) and perceived usefulness lowest (3.7 of 5). Their daily compliance was 68.8% (±31.1) at 3 weeks and 59.1% (±31.2) at 12 weeks after the start of treatment. Less than half of respondents (49.5%) and only one third (31.2%) perceived that their symptom reports were used by the nurses and doctors, respectively. CONCLUSION: Half of patients starting their first ever systemic treatment showed interest in using a remote system for daily symptom monitoring. For these patients, daily symptom monitoring seems acceptable, and the system is well complied within the first 12 weeks of treatment. IMPLICATION FOR PRACTICE: A remote system for daily symptom monitoring is feasible and enables quick response to deteriorating symptoms. Use by healthcare professionals is a point of improvement.

Using ePROMs for follow-up after palliative radiotherapy: An exploratory study with patients and health care providers.

OBJECTIVES: Patients treated with palliative radiotherapy may experience symptoms decreasing their quality of life. Electronic patient-reported outcome measures (ePROMs) could provide an opportunity to follow-up patients after treatment. METHODS: A mixed-method study was performed using self-constructed questionnaires, focus groups and interviews with patients and health care professionals (HCP). A qualitative approach was used to code the data. RESULTS: Forty-two patients, 21 radiation-oncologists, 15 general practitioners (GPs) and 24 home-care nurses completed a questionnaire. Ten patients, 6 radiation-oncologists, 14 GPs and 5 nurses were interviewed or participated in a focus group. Although patients and HCP are satisfied with current care, they believe ePROMs could improve follow-up, communication, continuity of care and self-management of symptoms. An easy to use, versatile ePROM platform seems to be important for successful implementation. Self-care tips and contact information should be added to relevant ePROM-questions, on both physical and psychological symptoms. CONCLUSION: Patients and HCP agree that ePROMs could improve systematical clinical follow-up after palliative radiotherapy, with self-management support being the primary objective of such a system. Practice implications ePROMs after palliative radiotherapy seem feasible, the exact patient population that could benefit the most will need to be explored further; as the palliative population is very diverse.

Caregiver distress and quality of life in primary caregivers of oncology patients in active treatment and follow-up.

OBJECTIVE: As the number of informal caregivers and their caregiving responsibilities increase, this study aims at evaluating caregiver distress, quality of life (QoL) and their predictors in informal caregivers of cancer patients during active treatment and follow-up. METHODS: This cross-sectional descriptive study targeted primary caregivers of patients with different cancer diagnoses. Caregiver-reported outcomes were measured by the Caregiver Risk Screen (CRS), Distress Thermometer (DT) and Caregiver Quality of Life Index-Cancer (CQOLC). RESULTS: Caregivers (n = 1580) experienced a low-to-moderate risk of caregiver distress and a moderate QoL during both treatment and follow-up. About 13% reported a high caregiver risk and 20% reported severe distress. There was a strong and significant correlation between caregiver distress and caregivers' QoL (0.793). Predictive factors for higher distress and poorer QoL were: fewer emotional and practical resources, being female, non-spousal relationship or not living together (p < 0.05). Caregivers of patients with head-and-neck, skin, lung and brain cancers reported the highest distress and lowest QoL. CONCLUSION: Caregiver distress is highly variable, but a minority of caregivers is at high risk for caregiver distress. Professional caregivers play an important role at supporting caregivers and detecting high-risk caregivers.

Real-time symptom management in the context of a remote symptom-monitoring system: prospective process evaluation and cross-sectional survey to explore clinical relevance.

PURPOSE: Electronic systems for remotely monitoring symptoms during systemic anticancer treatment are increasingly being used. Some of these systems have features triggering alerts to healthcare professionals for worsening and/or severe symptoms, enabling real-time symptom management. This study aimed at exploring the characteristics and process of real-time alert management as well as its clinical relevance as perceived by healthcare professionals. METHODS: From January until September 2019, a prospective process evaluation was set up to collect data on all alerts and their management. Also, an online survey presenting a selected number of cases was set up to explore oncologists' and oncology nurses' perceived clinical relevance of the real-time management of the alerts. RESULTS: The overall incidence rate of alerts was 1.4%. Of 253 alerts, pain, fever, dyspnea, and nausea were the most prevalent symptoms triggering an alert. The majority of alerts was managed by a nursing telephone consult alone. In 25.3% of cases, clinical examination was deemed necessary to manage the alert. In 148 of the ratings, oncologists and oncology nurses (totally) agreed with the clinical relevance of the real-time management (95.1%). The mean relevance score attached to the cases was 4.51 (±0.80). CONCLUSIONS: The majority of alerts triggered by a mobile tool for remote symptom monitoring during cancer treatment can be managed by a telephone nursing consult and real-time management is evaluated as (very) relevant by the majority of clinicians.

The added value of geriatric assessment in evaluating a patient's Health-Related Quality-of-Life: A study in ≥70-year-old early-stage invasive breast cancer patients.

OBJECTIVE: The objective of this study was to assess the relationship between geriatric assessment (GA) and health-related Quality-of-Life (HRQOL) in older patients with breast cancer. METHODS: Patients were assigned either to adjuvant chemotherapy (CTG) or to a control group (CG). Spearman rank coefficients (ρ) calculated correlations between HRQOL and GA at baseline, 3 months and 1 year. Multivariate regressions modelled the prognostic value of GA in evaluating of a patient's HRQOL and the accuracy of baseline GA in predicting HRQOL decline (change of ≥10 points). RESULTS: The analysis included 57 patients in the CTG and 52 in the CG. Strong correlations (ρ ≥ 0.5) were reported between the EORTC QLQ-C30 Physical Functioning Scale and Activities of Daily Living (ADL), Instrumental ADL (iADL) and Leuven Oncogeriatric Frailty Score Scale (LOFS). Multivariate models demonstrated that poor iADL, ADL and LOFS (CG) and ADL and iADL (CTG) contributed to a statistically (all p < .05) worse HRQOL. The relative gain in predicting 3-month and 1-year HRQOL decline was 24.1% and 4.7% (CG) and 6.1% and 18.3% (CTG). CONCLUSION: Our results show that the functional measures in the GA are strongly correlated with patient self-reported functioning. Poor baseline GA has a modest probability of predicting HRQOL deterioration.

Key elements for the education and counselling of patients treated with oral anticancer drugs.

PURPOSE: The process of education and counselling of patients treated with oral anticancer drugs, aimed to achieve adequate self-management, involves different stakeholders (i.e. physicians, oncology nurses, pharmacists) from primary and secondary care. However, currently no guiding principles exist on how to organize and perform education and counselling for these patients. Therefore, the purpose of this study was to develop and build consensus on key elements for the education and counselling in patients on oral anticancer drugs. METHODS: A multi-method approach combining a literature search, semi-structured interviews with patients and healthcare professionals, and input from experts were used to develop an initial list of key elements. Subsequently, consensus was built in a two-round Delphi-study, involving patients and healthcare professionals from primary and secondary care. Key elements were retained if at least 80% of respondents in all groups considered the element as important or if in at least one group 90% consensus was reached. RESULTS: The initial list contained 110 key elements, divided in 7 themes: coordination of care, patient contacts: style and content, medication counselling at the start of the treatment and during follow-up, psychosocial support, and involvement of family and friends. After the first Delphi round, 80% consensus was reached for 23 elements; 6 new key elements were added. After the second round, 80% consensus was reached for 51 out of 116 elements; 31 elements were added following the 90%-rule, yielding a list of 82 elements. CONCLUSION: The final list of 82 key elements, obtained in this study, could be used to develop clinical pathways that guide adequate education and counselling of patients on oral anticancer drugs. Due to the open description, the implementation of these elements can be adapted to the specific context and composition of the oncology team.

Systematic development of CHEMO-SUPPORT, a nursing intervention to support adult patients with cancer in dealing with chemotherapy-related symptoms at home.

BACKGROUND: Given the great symptom burden associated with chemotherapy on the one hand and generally poor self-management of symptoms by cancer patients on the other hand, our aim was to develop a nursing intervention to reduce symptom burden in adult cancer patients treated with chemotherapy and to support them in dealing with their various symptoms at home. METHODS: Development of the intervention was guided by the Intervention Mapping Approach and included following steps: needs assessment, formulation of proximal programme objectives, selection of methods and strategies, production of programme components, and planning for implementation and evaluation of the intervention. A panel of multidisciplinary healthcare professionals (n = 12) and a panel of patients and family caregivers (n = 7) were actively involved developing the intervention at each stage. RESULTS: For the intervention, four patient performance objectives relating to self-management were advanced. Self-efficacy and outcome expectations were selected as key determinants of dealing with chemotherapy-related symptoms. As methods for supporting patients, motivational interviewing and tailoring were found to fit best with the change objectives and determinants. Existing patient information materials were re-designed after panel input to reinforce the new intervention approach. CONCLUSION: The intervention mapping approach, including active involvement of the intervention providers and receivers, informed the design of this nursing intervention with two or more contacts. Further evaluation is needed to gain insight into the potential effects, feasibility and mechanisms of this complex intervention.

A nursing intervention aimed at reducing symptom burden during chemotherapy (CHEMO-SUPPORT): A mixed-methods study of the patient experience.

PURPOSE: CHEMO-SUPPORT is a nursing intervention that supports cancer patients in dealing with chemotherapy-related symptoms at home. The aims of the current study were (1) to determine how patients had experienced the intervention, and (2) to identify and better understand the mechanisms underlying CHEMO-SUPPORT's effects, its essential elements and possible pitfalls. METHODS: All 71 patients who had received the CHEMO-SUPPORT intervention completed a questionnaire, asking their opinion on the helpfulness, strengths, and weaknesses of the individual components of the intervention. Semi-structured interviews were also conducted with a purposeful selection of 9 of the 71 patients to get a deeper understanding of the patient experience. RESULTS: Nurses' caring support, combined with competent care, gave patients a sense of reassurance and made them feel (better) able to deal with their symptoms. The importance patients ascribed to the intervention varied according to the individual symptom experience and coping mechanisms of the patients, and by their experience with regular care. Patients rated the informational brochure component of the intervention most helpful. It served as their 'companion', offering support and expert advice at home. Patients felt that a strength of the brochure was the support they received from the quotes of fellow patients. CONCLUSIONS: The CHEMO-SUPPORT intervention made patients feel more reassured and empowered in dealing with symptoms at home. That the CHEMO-SUPPORT experience was influenced by personal and contextual factors highlights the importance of tailoring the intervention to each patient, as well as improving supportive and competent symptom-management support in daily oncology care.

A Nursing Intervention for Reducing Symptom Burden During Chemotherapy
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OBJECTIVES: To evaluate the efficacy of an individually tailored nursing intervention for reducing chemotherapy-related symptom distress in adult patients with cancer. 
. SAMPLE & SETTING: A control group (n = 71) received usual care and an intervention group (n = 72) received usual care and the CHEMO-SUPPORT intervention, all at the University Hospitals of Leuven in Belgium.
. METHODS & VARIABLES: The intervention effect was evaluated by measuring the difference in outcomes between the two groups. The primary outcome, overall symptom distress, and other symptom-related outcomes were self-reported at the start of treatment (baseline) and at 3, 6, and 12 weeks.
. RESULTS: The CHEMO-SUPPORT intervention showed significantly less worsening of overall symptom distress and severity. Self-efficacy and outcome expectations (measured at six weeks) were significantly higher in the intervention group. Self-care (measured at 12 weeks) was statistically similar between the two groups. The results emphasize the importance of nurses in coaching patients to adequately self-manage their symptoms at home.
. IMPLICATIONS FOR NURSING: Providing goal-directed self-management support using motivational interviewing as well as tailoring are promising areas for reducing chemotherapy-related symptom distress.

Use of a symptom diary during chemotherapy: A mixed-methods evaluation of the patient perspective.

PURPOSE/OBJECTIVES: Patients' perceptions about tools for self-reporting symptoms experienced at home may influence both the patients' use of the tool and ultimately the efficacy of the interventions. The aim of this study was to determine the extent patients use a paper-pencil symptom-monitoring diary during chemotherapy treatment, to identify factors that mediate its use at home, and to determine perceptions patients have of the diary. METHODS: A quantitative survey assessed patients' use of the diary, their experiences and opinions. A secondary analysis of semi-structured interviews used was performed to determine how patients perceived being offered the diary for tracking symptoms and, if they did use it, their experiences with the diary. RESULTS: Eighty-seven patients (78%) used or had been using the diary during their chemotherapy treatment. Most patients felt that the diary supported them in discussing treatment-related symptoms with their doctors and nurses during hospital visits and helped them to deal with symptoms at home. However, diary users felt that their professional caregivers viewed the diary differently, specifically not valuing it enough to actively use it in their care. CONCLUSIONS: This study indicates that the majority of chemotherapy patients at our hospital perceive the symptom diary to be a feasible tool in terms of ease of use and time investment and that it is helpful. However, from the patient perspective, healthcare professionals' implementation of the diary in their behalf is lacking.

Implementation and Use of a Patient Symptom Diary During Chemotherapy: A Mixed-Methods Evaluation of the Nurse Perspective.

PURPOSE/OBJECTIVES: To gain a deeper understanding of nurses' experience working with a patient diary for tracking and treating side effects during chemotherapy.
. DESIGN: A mixed-methods design was used to learn about oncology nurses' use and perceptions of a symptom diary. 
. SETTING: Six oncology wards and two outpatient clinics at the University Hospitals Leuven, Belgium.
. SAMPLE: 79 nurses completed a survey, and 14 nurses participated in focus group discussions.
. METHODS: First, a survey sampled nurses' use and perceptions of the diary. Next, focus group discussions were held with the aim of arriving at a deeper understanding of the survey results.
. MAIN RESEARCH VARIABLES: Use and perceptions of a symptom diary.
. FINDINGS: Most nurses reported performing diary-related behavior to some extent. The survey and focus groups indicated that many nurses strongly believed in the value of the diary, but some were still hesitant or had concerns about patients' perceptions of the diary. The focus group results showed that nurses' use of the diary in daily practice was influenced by their personal beliefs about the value of the diary, the team's, and those of their patients.
. CONCLUSIONS: Although a positive trend was noted, nurses' use of the symptom diary was suboptimal six months after its implementation.
. IMPLICATIONS FOR NURSING: This study highlights important issues that need to be addressed to advance the successful implementation of the symptom diary.

Adherence to oral cancer therapy in older adults: The International Society of Geriatric Oncology (SIOG) taskforce recommendations.

There is an increasing trend towards using oral systemic therapy in patients with cancer. Compared to parenteral therapy, oral cancer agents offer convenience, have similar efficacy, and are preferred by patients, consequently making its use appealing in older adults. However, adherence is required to ensure its efficacy and to avoid compromising treatment outcomes, especially when the treatment goal is curative, or in case of symptomatic/rapidly progressing disease, where dose-intensity is important. This opens a new challenge for clinicians, as optimizing patient adherence is challenging, particularly due to lack of consensus and scarcity of available clinical evidence. This manuscript aims to review the impact of age-related factors on adherence, summarize the evidence on adherence, recommend methods for selecting patients suitable for oral cancer agents, and advise monitoring interventions to promote adherence to treatment.

Living with a high-grade glioma: A qualitative study of patients' experiences and care needs.

PURPOSE: Patients with high-grade glioma (HGG) face debilitating symptoms and a poor prognosis. The aims of this study were to better understand how patients with HGG experience life with a brain tumor, and to explore their professional care needs. METHODS: We conducted a qualitative research of HGG patients' experiences using semi-structured interviews and using a Grounded Theory approach. Participants were recruited during patients' hospital visits for treatment or follow-up at the University Hospitals Leuven, Belgium. Seventeen HGG patients were interviewed for the study. RESULTS: Interviews showed that HGG diagnosis left patients feeling like everything was surreal. From that point on, their life was marked by loss. HGG patients sometimes felt disregarded by family caregivers, professional caregivers, and the health care system. They felt as if they were on the "sidelines" of their own life. Despite the devastating experience of living with this type of brain tumor, HGG patients also expressed great inner strength, and they tried to maintain hope. Their pivotal professional care needs concerned information, communication, and accessibility. CONCLUSIONS: Diagnosis of HGG changes life drastically. Our results highlight the need for professional caregivers to be more considerate and supportive of patients with this life-changing diagnosis. Additionally, professional caregivers need to acknowledge these patients as persons and strive to empower them in order to bolster their personal strength.

Family Caregivers of Patients With a High-Grade Glioma: A Qualitative Study of Their Lived Experience and Needs Related to Professional Care.

BACKGROUND: The poor prognosis and disabling symptoms of a high-grade glioma (HGG) affect not only the patient but place high demands on family caregivers. OBJECTIVE: The objective of this study was to explore the experience of family caregivers of patients with HGG and their needs related to professional care. METHODS: A qualitative research using semistructured interviews was conducted. Sixteen family caregivers of patients with an HGG who were treated or in follow-up at a Belgian hospital were interviewed. RESULTS: Family caregivers reported experiencing loss of their old life and the patient's old self. They were saddened to see the patient's disabilities and the change in their relationship, which in turn contributed to feelings of loneliness. At the same time, they reported a strong commitment and determination to provide the patient with the best possible care. Many, however, felt unprepared to do so, and they reported feeling insecure. Caregivers expressed the need for information and for consideration and support. CONCLUSIONS: The diagnosis of an HGG is disruptive to the life of family caregivers. They strongly commit but at the same time struggle to care for the patient. IMPLICATIONS FOR PRACTICE: Professional caregivers should be aware of the subtle balance between family caregivers' wish to care and the burden of caregiving. Professional caregivers can be of great value to family caregivers by providing guidance and assistance for this new caregiving role while being considerate of their commitment and their grief.