Nurse-led Family and Network Consultations - Addressing Cancer-Related Symptoms and Concerns in Patients With High-grade Glioma and Their Families and Network (CARES)
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 114
- 试验地点
- 2
- 主要终点
- The experiences from participation in Family and network consultations (FNC)
研究概览
简要总结
Patients diagnosed with high-grade gliomas (HGG) experience a complex symptom burden including high-levels concerns.
As a consequence to this life-threatening disease, the rely on close contact with a specialized neuro-oncological team as well as support and practical assistance from their families. However, multidimensional burden of caregivers has been reported.
CARES seeks to facilitate and activate the existing resources within the patient and the network using a new model of systematic family care approach.
Specialized neuro-oncological nurses are responsible for an expanded area providing an opportunity for the nursing profession to establish a new model of nursing care. This may not only benefit the patients and their families but also contribute to strengthen the nurses' professional identity and support further development of neuro-oncological specialist team.
详细描述
Objectives To explore the feasibility and benefits of a 'Nurse-led Family and Network Consultation' (FNC) that seek to identify and address patients' symptoms/concerns and caregiver burden on one side and identify the resources and opportunities to ease their burdens on the other side.
To explore the impact of these nurse consultations on the nurses' perception of autonomy, self-esteem, and confidence, representing their professional identity.
Methods This is a feasibility study in two parts: 1) a sample of patients with HGG (n=30) and their caregivers (n=30) recruited for informing the study about the family function, support and caregiver burden and 2) a sample of patients with HGG (n=30) and their caregivers (n=30) recruited for intervention group (IG) with 'Nurse-led Family and Network Consultations' using pretest and posttest measures.
Part two applies a Mixed Method convergent design with a QUAL + QUAN design.
Nursing BA students at Metropolitan University College will carry out affiliated bachelor projects within CARES.
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Parallel
- 主要目的
- Supportive Care
- 盲法
- None
盲法说明
a sample of patients with HGG (n=30) and their caregivers (n=30) recruited for intervention group (IG) with 'Nurse-led Family and Network Consultations' using pretest and posttest measures.
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Patients in the cohort (n=30) and IG (n=30) and their families will be recruited within the first week after surgery. Included are:
- •Patients ≥ 18 years of age and newly diagnosed with HGG (WHO classification grade III/IV) after biopsy or operation.
- •The patients and their family members and network must be able to speak and understand Danish.
- •Provide informed consent
排除标准
- •Excluded are • Patients without family or any network. There are no restrictions regarding the family members/network relation to the patient as long as the patient has accepted the person(s) as being a close relative or friend that the patient allows to participate in the FNC. Written informed consent will be obtained before discharge from the hospital or by telephone after discharge.
结局指标
主要结局
The experiences from participation in Family and network consultations (FNC)
时间窗: At week 50 to 52
Interviews seek the perspectives on the life situation related to the participation of FNC
次要结局
- Change in the perceived Caregiver Burden Scale over time (only caregivers)(At week 1-2, week 8-10, week 28-30 and week 50-52)
- Change in the severity of depressive symptoms over time measured by the Hospital Anxiety and Depression Scale (HADS)(At week 1-2, week 8-10, week 28-30 and week 50-52)
- The perceived changes of the functioning within a Family will be measured by the Psychometric development of the Iceland-Expressive Family Functioning Questionnaire (ICE-EFFQ) (caregiver and patient, individually)(At week 1-2, week 8-10, week 28-30 and week 50-52)
- The quality of life will be measured by The Functional Assessment of Cancer Therapy-Brain (FACT-Br)(At week 1-2, week 8-10, week 28-30 and week 50-52)
- The prevalence of symptoms over time will be measured by the M.D. Anderson Symptom Inventory-Brain Tumour Module(At week 1-2, week 8-10, week 28-30 and week 50-52)
- Change in the severity of anxiety over time measured by the Hospital Anxiety and Depression Scale (HADS)(At week 1-2, week 8-10, week 28-30 and week 50-52)
- Changes in the perception of received support from nurses will be measured by the ICE Family Perceived Support Questionnaire (ICE-FPSQ) (caregiver and patient, individually)(At week 1-2, week 8-10, week 28-30 and week 50-52)
研究者
Karin Piil
Ph.D. Research and quality manager
Rigshospitalet, Denmark