Characterizing Distress and Identifying Modifiable Intervention Targets for Family Caregivers of Patients with Malignant Gliomas

Individuals caring for patients with malignant gliomas experience high rates of anxiety; however, an in-depth understanding of their distress and evidence-based interventions to target their needs are lacking. We conducted semistructured interviews with caregivers with elevated anxiety to characteri...

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Vydáno v:Journal of palliative medicine Ročník 26; číslo 1; s. 17
Hlavní autoři: Forst, Deborah A, Kaslow-Zieve, Emilia R, Hansen, Andrea, Mesa, Michelle, Landay, Sophia L, Quain, Kit M, Sereno, Isabella, El-Jawahri, Areej, Greer, Joseph A, Temel, Jennifer S, Jacobs, Jamie M
Médium: Journal Article
Jazyk:angličtina
Vydáno: United States 01.01.2023
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ISSN:1557-7740, 1557-7740
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Abstract Individuals caring for patients with malignant gliomas experience high rates of anxiety; however, an in-depth understanding of their distress and evidence-based interventions to target their needs are lacking. We conducted semistructured interviews with caregivers with elevated anxiety to characterize their drivers of anxiety, identify modifiable intervention targets, and capture their preferences for a psychosocial intervention. From 9/2017 to 3/2019, we conducted semistructured interviews with 21 caregivers of patients with malignant gliomas, at time points following the patient's diagnosis or within one to three months after the patient's death. Eligible caregivers in the United States had clinically significant anxiety as measured by a Hospital Anxiety and Depression Scale-Anxiety score >7. Three independent coders employed thematic content analysis to analyze the qualitative data with NVivo 12, achieving high intercoder agreement (Kappa = 0.98). On average, caregivers were 54.81 years old (  10.85) with elevated anxiety (  10.90,  3.25). We identified six themes in which caregivers described (1) coping through reassurance seeking or avoidance, (2) changes in their relationship with the patient, (3) challenges with social support, (4) vacillation between certainty and uncertainty regarding the future, (5) devaluation of self-care for the patients' needs, and (6) challenges communicating with the health care team. Caregivers were interested in an intervention soon after the patient's diagnosis, yet expressed concern about finding the time to participate. Emergent themes characterized the distress experienced by caregivers of patients with malignant gliomas and provided insight into their psychosocial intervention preferences. We identified evidence-based intervention components based on the modifiable factors arising from these themes.
AbstractList Individuals caring for patients with malignant gliomas experience high rates of anxiety; however, an in-depth understanding of their distress and evidence-based interventions to target their needs are lacking. We conducted semistructured interviews with caregivers with elevated anxiety to characterize their drivers of anxiety, identify modifiable intervention targets, and capture their preferences for a psychosocial intervention. From 9/2017 to 3/2019, we conducted semistructured interviews with 21 caregivers of patients with malignant gliomas, at time points following the patient's diagnosis or within one to three months after the patient's death. Eligible caregivers in the United States had clinically significant anxiety as measured by a Hospital Anxiety and Depression Scale-Anxiety score >7. Three independent coders employed thematic content analysis to analyze the qualitative data with NVivo 12, achieving high intercoder agreement (Kappa = 0.98). On average, caregivers were 54.81 years old (  10.85) with elevated anxiety (  10.90,  3.25). We identified six themes in which caregivers described (1) coping through reassurance seeking or avoidance, (2) changes in their relationship with the patient, (3) challenges with social support, (4) vacillation between certainty and uncertainty regarding the future, (5) devaluation of self-care for the patients' needs, and (6) challenges communicating with the health care team. Caregivers were interested in an intervention soon after the patient's diagnosis, yet expressed concern about finding the time to participate. Emergent themes characterized the distress experienced by caregivers of patients with malignant gliomas and provided insight into their psychosocial intervention preferences. We identified evidence-based intervention components based on the modifiable factors arising from these themes.
Background: Individuals caring for patients with malignant gliomas experience high rates of anxiety; however, an in-depth understanding of their distress and evidence-based interventions to target their needs are lacking. Objective: We conducted semistructured interviews with caregivers with elevated anxiety to characterize their drivers of anxiety, identify modifiable intervention targets, and capture their preferences for a psychosocial intervention. Design: From 9/2017 to 3/2019, we conducted semistructured interviews with 21 caregivers of patients with malignant gliomas, at time points following the patient's diagnosis or within one to three months after the patient's death. Setting/Subjects: Eligible caregivers in the United States had clinically significant anxiety as measured by a Hospital Anxiety and Depression Scale-Anxiety score >7. Measurements: Three independent coders employed thematic content analysis to analyze the qualitative data with NVivo 12, achieving high intercoder agreement (Kappa = 0.98). Results: On average, caregivers were 54.81 years old (SD = 10.85) with elevated anxiety (M = 10.90, SD = 3.25). We identified six themes in which caregivers described (1) coping through reassurance seeking or avoidance, (2) changes in their relationship with the patient, (3) challenges with social support, (4) vacillation between certainty and uncertainty regarding the future, (5) devaluation of self-care for the patients' needs, and (6) challenges communicating with the health care team. Caregivers were interested in an intervention soon after the patient's diagnosis, yet expressed concern about finding the time to participate. Conclusions: Emergent themes characterized the distress experienced by caregivers of patients with malignant gliomas and provided insight into their psychosocial intervention preferences. We identified evidence-based intervention components based on the modifiable factors arising from these themes.Background: Individuals caring for patients with malignant gliomas experience high rates of anxiety; however, an in-depth understanding of their distress and evidence-based interventions to target their needs are lacking. Objective: We conducted semistructured interviews with caregivers with elevated anxiety to characterize their drivers of anxiety, identify modifiable intervention targets, and capture their preferences for a psychosocial intervention. Design: From 9/2017 to 3/2019, we conducted semistructured interviews with 21 caregivers of patients with malignant gliomas, at time points following the patient's diagnosis or within one to three months after the patient's death. Setting/Subjects: Eligible caregivers in the United States had clinically significant anxiety as measured by a Hospital Anxiety and Depression Scale-Anxiety score >7. Measurements: Three independent coders employed thematic content analysis to analyze the qualitative data with NVivo 12, achieving high intercoder agreement (Kappa = 0.98). Results: On average, caregivers were 54.81 years old (SD = 10.85) with elevated anxiety (M = 10.90, SD = 3.25). We identified six themes in which caregivers described (1) coping through reassurance seeking or avoidance, (2) changes in their relationship with the patient, (3) challenges with social support, (4) vacillation between certainty and uncertainty regarding the future, (5) devaluation of self-care for the patients' needs, and (6) challenges communicating with the health care team. Caregivers were interested in an intervention soon after the patient's diagnosis, yet expressed concern about finding the time to participate. Conclusions: Emergent themes characterized the distress experienced by caregivers of patients with malignant gliomas and provided insight into their psychosocial intervention preferences. We identified evidence-based intervention components based on the modifiable factors arising from these themes.
Author Mesa, Michelle
Temel, Jennifer S
Forst, Deborah A
Jacobs, Jamie M
Kaslow-Zieve, Emilia R
Sereno, Isabella
Quain, Kit M
Greer, Joseph A
Hansen, Andrea
Landay, Sophia L
El-Jawahri, Areej
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crossref_primary_10_1111_cns_70516
crossref_primary_10_1080_13803395_2025_2542245
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brain tumor
cognitive–behavioral therapy
family caregivers
cancer
malignant glioma
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Snippet Individuals caring for patients with malignant gliomas experience high rates of anxiety; however, an in-depth understanding of their distress and...
Background: Individuals caring for patients with malignant gliomas experience high rates of anxiety; however, an in-depth understanding of their distress and...
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SubjectTerms Adaptation, Psychological
Anxiety
Caregivers - psychology
Glioma
Humans
Middle Aged
Patients
Title Characterizing Distress and Identifying Modifiable Intervention Targets for Family Caregivers of Patients with Malignant Gliomas
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