Family Caregivers of Patients With a High-Grade Glioma

Coolbrandt, Annemarie; Sterckx, Wendy; Clément, Paul M.; Borgenon, Sonja; Decruyenaere, Marleen; Vleeschouwer, Steven De; Mees, Annemie; Casterlé, Bernadette Dierckx de

doi:10.1097/ncc.0000000000000216

Cited by 29 publications

(34 citation statements)

References 16 publications

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“…Second, and similar to previous studies [58,59] the SWB score was higher than the normative values at all test points showing that patients experience increased social support from friends and families, which might lead to an improvement of the HRQOL. Third, previous study confirms that hope is a source of strength that helps individuals to remain active [60,61], brings purpose and meaning to life, encourages a positive attitude and improves psychological well-being [62]. EWB was related to the level of functional status [63], and the 1-year survivors had higher KPS values compared to the primary sample throughout the study, which could be the reason for the increase in the EWB.…”

Section: Discussionmentioning

confidence: 59%

Health-related quality of life in patients with high-grade gliomas: a quantitative longitudinal study

et al. 2015

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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 points. Among a sub-group of participants who completed all study requirements for the entire study period the level of anxiety decreased significantly during the study. The FACT-Br sub-scale of emotional well-being increased significant, indicating a better HRQOL attend of followup. The diagnosis of a HGG leads to an ongoing functional decline measured as a decline of the KPS and a reduced physical activity during leisure time. Supportive care combined with rehabilitative and palliative approaches might well be valuable along the trajectory especially during the post-surgery period when anxiety is at its highest peak.

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Section: Discussionmentioning

confidence: 59%

Health-related quality of life in patients with high-grade gliomas: a quantitative longitudinal study

et al. 2015

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“…While most factors within our model have been identified in previous research on family caregiving experiences which include motives, 7,13,25 problems and challenges, 13,14,26–35 actions and strategies, 13,30,36,37 consequences, 13,18,31,32,38,39,54 and social support in caregiving, 13,40,41 we found some new factors in strategies and consequences: sharing care, making sacrifices, and family cohesiveness. Our study also confirms that financial circumstances can be described both as a condition and as a consequence.…”

Section: Discussionmentioning

confidence: 79%

The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

et al. 2019

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Background:Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered “normal”: a societal and religious obligation. The values underpinning this might influence families’ perception of it.Aim:To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks.Design:A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model.Setting/participants:The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer.Results:A total of 24 family caregivers participated. “Belief in caregiving” appeared to be the core phenomenon. This reflects the caregivers’ conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified.Conclusion:We developed a model of family caregivers’ experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.

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“…It has previously been shown that relatives are a vulnerable group in terms of mental health, with the relatives’ anxiety being at its highest before chemoradiotherapy and remaining high over time [ 27 ]. Worse scores among relatives can be related to a deeper insight into the disease and its prognosis, the personality changes that patients undergo [ 28 , 29 ], as well as the consequence of these combined factors on family life [ 27 ].…”

Section: Discussionmentioning

confidence: 99%

“…Other possible explanations for worse scores in the group of relatives might be uncertainty about the surgery, the fear of being forced to take care of the patient, or being left alone. These feelings can at the other hand also be mixed with feelings of gratitude and privilege of taking care of the patient [ 29 , 30 ].…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life and emotional well-being in patients with glioblastoma and their relatives

et al. 2020

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Purpose The health-related quality of life (HRQoL) for patients with glioblastoma is known to be largely affected. Little is known about the HRQoL for relatives and the relationship between these two. To optimize family care, such issues need to be addressed early on, preferably from the time of diagnosis. This study aimed to describe and compare the HRQoL of patients with glioblastoma and their relatives before surgery. Methods A prospective cohort study including 89 patients diagnosed with glioblastoma and their relatives. HRQoL (Short Form Health Survey, SF-36) and emotional well-being (hospital anxiety and depression scale, HADS) were analysed with descriptive, comparative and multivariable regression analyses. Results Relatives scored worse for mental HRQoL (p < 0.001) and for symptoms of anxiety (p < 0.001) and depression (p = 0.022) compared to patients. The multivariable regression showed an increased risk of affected mental HRQoL in relatives of patients with poor functional status (WHO) (p = 0.01) and higher levels in symptoms of anxiety (p = 0.03), or when relatives had low physical HRQoL themselves (p = 0.01). There was increased risk of affected mental HRQoL in patients with comorbidities (p = 0.003), and when the respective relative showed higher levels in symptoms of anxiety (p = 0.005). Conclusion Relatives scored worse for mental HRQoL and emotional well-being than patients, suggesting that HRQoL in patients and relatives might be connected to symptoms of anxiety in the respective individual at disease onset. The results illustrate the need to screen HRQoL and emotional well-being in both patients and relatives from an early stage—before surgery.

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Family Caregivers of Patients With a High-Grade Glioma

Cited by 29 publications

References 16 publications

Health-related quality of life in patients with high-grade gliomas: a quantitative longitudinal study

Health-related quality of life in patients with high-grade gliomas: a quantitative longitudinal study

The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

Health-related quality of life and emotional well-being in patients with glioblastoma and their relatives

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