Caregiving Skills Training for Brain Cancer
Recruiting in Palo Alto (17 mi)
Age: 18+
Sex: Any
Travel: May Be Covered
Time Reimbursement: Varies
Trial Phase: Academic
Recruiting
Sponsor: M.D. Anderson Cancer Center
Disqualifiers: Psychotherapy, Cognitive impairment, Children, others
No Placebo Group
Trial Summary
What is the purpose of this trial?Family caregivers of patients with a primary brain tumor experience a high caregiving load including assistance with activities of daily living without any formal training. It is not surprising that this vulnerable caregiver population reports high levels of distress along with numerous caregiving-related concerns, which may compromise their ability to provide quality care. This project will examine the feasibility and initial evidence for efficacy of a caregiving skills intervention aiming to improve caregiver and patient psychological health; caregiving efficacy and role adjustment; and reduce patient cancer-related symptoms and healthcare utilization.
Will I have to stop taking my current medications?
The trial information does not specify whether participants need to stop taking their current medications.
What data supports the effectiveness of the treatment Simulation-Based Caregiving Skills Training for caregivers of brain cancer patients?
Research shows that providing education and skills training to caregivers can reduce their burden and improve their well-being. For example, a study found that standardized education for caregivers of cancer patients improved their overall well-being, suggesting that similar training could be beneficial for caregivers of brain cancer patients.
12345Is Simulation-Based Caregiving Skills Training safe for humans?
The study 'Building Family Caregiver Skills Using a Simulation-Based Intervention' evaluated the safety of a psychoeducational intervention for family caregivers and found it to be safe.
24678How is the Simulation-Based Caregiving Skills Training treatment unique for brain cancer caregivers?
This treatment is unique because it focuses on training caregivers of brain cancer patients through simulation-based methods, helping them gain the necessary skills and confidence to provide care, which addresses a major unmet need in this area.
134910Eligibility Criteria
This trial is for family caregivers of patients with high-grade gliomas (HGG). Caregivers can be spouses, parents, or adult children. Both the caregiver and patient must be over 18, speak English, and consent to participate. Patients should have a moderate ability to perform daily activities (KPS of 50-100). Excluded are caregivers in regular psychotherapy, patients with cognitive issues affecting survey completion, minors under 18 years old, and pregnant patients.Inclusion Criteria
I am a close family member of someone with high-grade glioma being treated at MDACC.
I am over 18, speak English, and can give informed consent.
I can take care of myself but may not be able to do active work.
Exclusion Criteria
I am under 18 years old.
I regularly see a licensed therapist for psychotherapy.
Pregnant patients
+1 more
Trial Timeline
Screening
Participants are screened for eligibility to participate in the trial
2-4 weeks
Baseline Assessment
Participants complete a baseline assessment of questionnaires including demographic information and psychological and physical health
1 week
1 visit (in-person)
Caregiver Intervention Sessions
Caregivers participate in 4 intervention sessions, with the first 2 sessions at the Simulation Center and the remaining 2 sessions remotely via videoconference
4 weeks
2 visits (in-person), 2 visits (virtual)
Follow-up
Participants are monitored for safety and effectiveness after intervention
4 weeks
Participant Groups
The study tests a training program designed to help family caregivers manage their caregiving responsibilities better. It aims to improve psychological health for both caregiver and patient while enhancing caregiving skills and adjusting to the caregiver role. The intervention also seeks to reduce cancer-related symptoms in patients.
2Treatment groups
Experimental Treatment
Group I: Caregiver Intervention SessionsExperimental Treatment1 Intervention
Caregiver will take part in 4 caregiver intervention sessions. The first 2 sessions will take place in the Simulation Center at the hospital when you are scheduled for treatment or a follow-up appointment. The remaining 2 sessions will be done remotely using a videoconference platform (such as Zoom) and will focus on discussing your caregiver's role and experiences and suggesting coping and self-care strategies.
Group II: Baseline AssessmentExperimental Treatment1 Intervention
Participants will be asked to complete a baseline assessment of questionnaires that will ask:
* Demographic information (such as your age, sex, and race)
* Psychological and physical health
Find a Clinic Near You
Research Locations NearbySelect from list below to view details:
M D Anderson Cancer CenterHouston, TX
Loading ...
Who Is Running the Clinical Trial?
M.D. Anderson Cancer CenterLead Sponsor
National Cancer Institute (NCI)Collaborator
References
Caring ability and its related factors in the family caregivers of patients with cancer. [2023]Caregivers of cancer patients experience a variety of challenges caused by the prolonged burden of care. Many of these caregivers do not have the necessary knowledge, skills and caring ability to fulfil their caring role. Therefore, healthcare providers should support them in learning to provide high-quality care. Evaluating caregivers' ability will be the first step of this supportive programme.
A transactional model of cancer family caregiving skill. [2022]Family caregivers of persons receiving treatment of cancer must acquire illness-related skills not usually found among nonprofessional caregivers. Although research is needed to understand the skill acquisition process, no models of family caregiving skill exist to guide such research. The purpose of this study was to develop a model of caregiving skill through qualitative research. Participants were 44 caregiver/patient dyads and 63 individual caregivers. Data were collected using a semi-structured interview. A transactional model of family caregiving skill was developed that includes the concepts of demands of the illness situation, patterns of care, caregiver responses, and patient responses.
Exploratory multi-methods evaluation of an online intervention for carers of people with high-grade glioma. [2023]Inadequate knowledge and skills and a lack of confidence to provide care have been identified as major unmet needs for carers of people with brain cancer. An online intervention was developed to address the unmet needs of carers of people with high-grade glioma.
Guiding research in family care: a new approach to oncology caregiving. [2022]Much research has documented both negative emotional and physical health conditions that may result from providing care to a family member with an illness. However, little has been done in family caregiving, particularly in oncology, to evaluate pathways in which biological and behavioral responses to stress may interact. The purpose of this article is to describe how a mind-body (biobehavioral) model can be adapted to study family caregivers of persons with a brain tumor.
The impact of education on caregiver burden on two inpatient oncology units. [2022]Providing standardized education can alleviate the burden felt by the caregiver and improve health outcomes for both the patient and caregiver. Four disease groups were included in this study that represent a significantly longer hospital stay than other cancers: acute myelogenous leukemia, acute lymphoblastic leukemia, lymphoma, or those undergoing blood marrow transplant. The complexity of care is significantly higher, necessitating greater caregiver burden following hospitalization. Eligible patients and their caregivers received post-hospitalization care education through an Oncology CarePartner Program addressing the patient's physical and emotional needs. The impact of the CarePartners program on caregiver burden was evaluated by the Oberst Caregiving Burden Scale (OCBS) and Bakas Caregiving Outcomes Scale (BCOS) on two oncology units (medical/oncology (n = 17) and blood marrow transplant (n = 21)) at three times: within 5 days of admission (T1), patient discharge from the hospital (T2), and 30 days post-discharge (T3). There were significant increases seen from T1-T2 (median = 4, p = 0.0007) and T1-T3 (median = 5.5, p = 0.003) in the BCOS. No significant changes in OCBS (time or difficulty) were seen. Standardized patient education helped improve caregivers' overall well-being but lacked in impacting the time spent and difficulty with caregiving tasks. Educational changes to address these specific areas or evaluation by different scales are both worth further investigation.
Building Family Caregiver Skills Using a Simulation-Based Intervention: A Randomized Pilot Trial. [2020]To evaluate the feasibility, acceptability, safety, and fidelity of a psychoeducational intervention to improve family caregiver technical and communication skills using structured simulations.
Family caregiving skill: development of the concept. [2019]Families increasingly are expected to provide complex care at home to ill relatives. Such care requires a level of caregiving knowledge and skill unprecedented among lay persons, yet family caregiving skill has never been formally developed as a concept in nursing. The purpose of the study reported here was to develop the concept of family caregiving skill systematically through qualitative analysis of interviews with patients (n = 30) receiving chemotherapy for cancer and their primary family caregivers (n = 29). Open coding and constant comparison constituted the analytic methods. Sixty-three indicators of caregiving skill were identified for nine core caregiving processes. Family caregiving skill was defined as the ability to engage effectively and smoothly in these nine processes. Properties of family caregiving skill also were identified. Conceptualizing skill as a variable and identifying indicators of varying levels of skill provides a basis for measurement and will allow clinicians to more precisely assess family caregiving skill.
Toward Engaging Caregivers: Inclusion in Care and Receipt of Information and Training among Caregivers for Cancer Patients Who Have Been Hospitalized. [2021]Practice recommendations and policies (e.g., CARE Act) emphasize identifying and training a family caregiver during a patient's hospitalization, but engagement of caregivers is not standard in the USA. To inform caregiver engagement, we highlight (1) the frequency of cancer patient hospitalizations as well as (2) the caregiving characteristics and perceptions of inclusion in care and receipt of training among caregivers for patients who had been hospitalized. To further highlight this group of cancer caregivers, we compare to (1) cancer caregivers for patients who had not been hospitalized; (2) caregivers for patients with a primary condition other than cancer who had been hospitalized; and (3) caregivers for patients with a primary condition other than cancer who had not been hospitalized This secondary analysis is drawn from the National Alliance for Caregiving's (NAC)/AARP Caregiving in the US dataset of unpaid adult (i.e., age 18 and older) caregivers. A higher percentage of the cancer caregivers compared to non-cancer caregivers reported multiple hospitalizations for their care recipient over the previous year. Many cancer caregivers for patients who had been hospitalized reported high objective burden (68%) and that caregiving was highly stressful (49%). A majority of these caregivers (60%) indicated that a healthcare provider had asked them what they needed to assist the patient, while fewer (34%) were asked about their needs to take care of themselves, which, though low, was significantly higher compared to caregivers of patients with a primary condition other than cancer that had been hospitalized. The most frequently endorsed training method for the cancer caregivers of patients who had been hospitalized was "being shown how to do a skill by a qualified person" (67%) followed by "performing a skill while a qualified person watches" (57%). Findings suggest that the oncology context might be more advanced in terms of engaging and supporting caregivers, but that improvement is still needed. Furthermore, these findings identify preferred training methods among those who have been in the hospital context as a caregiver.
Neuro-oncology family caregiving: review and directions for future research. [2022]Vast research has underscored negative psychological and physical effects of providing care for someone with a chronic illness. Unfortunately, caregivers of persons with a primary malignant brain tumor have received very little attention in the research literature. The purpose of this article is to review what is known regarding descriptive and interventional work in neuro-oncology caregiving and to suggest avenues for future research. A total of 36 descriptive and six intervention studies were identified for this review. Increased distress in neuro-oncology caregivers has been linked to younger age; higher levels of economic burden and unmet needs; and lower levels of social support, spirituality and caregiver mastery. Intervention research suggests that educational programs and cognitive behavioral therapy may decrease neuro-oncology caregiver distress.
Caregiver survey in glioblastoma focused on cognitive dysfunction: development and results from a multicenter study. [2023]Aim: To develop a cognitive dysfunction (CD) focused questionnaire to evaluate caregiver burden in glioblastoma. Materials & methods: The survey was developed from stakeholder consultations and a pilot study, and disseminated at eight US academic cancer centers. Caregivers self-reported caring for an adult with glioblastoma and CD. Results: The 89-item survey covered demographics, CD symptoms and caregiver burden domains. Among 185 caregivers, most were white, educated females and reported memory problems as the most common CD symptom. An exposure-effect was observed, with increase in number of CD symptoms significantly associated with greater caregiver burden. Conclusion: This questionnaire could guide caregiver interventions and be adapted for use longitudinally, in community cancer settings, and in patients with brain metastases.