Understanding sleep disturbance in the context of malignant brain tumors: a qualitative analysis

Jeon, Megan S.; Agar, Meera; Koh, Eng‐Siew; Nowak, Anna K.; Hovey, Elizabeth; Dhillon, Haryana M.

doi:10.1093/nop/npaa081

Cited by 7 publications

(7 citation statements)

References 29 publications

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“…Contributing to the care of a young cancer patient was not the sole cause of fatigue. Two studies cited difficulties associated with sleep [ 22 , 23 ]. The sleep of siblings was in some cases disturbed after the cancer diagnosis, given their concern about what the consequences of this disease might be on the patient [ 23 ].…”

Section: Resultsmentioning

confidence: 99%

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Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs

Reuvers,

Gedik,

Way

et al. 2023

Cancers

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AYAs with cancer (aged 15 to 39 at primary diagnosis) form a specific group within oncology, and there is limited information on the impact on their informal caregivers. This scoping review aimed to gain insight into the burden on caregivers of AYAs with cancer and identify the unmet needs they might have. Eligible articles focused on impacts in one of the domains of caregiver burden (physical, psychological, social, on schedule, financial) or unmet needs. In all domains of caregiver burden, impact was reported by caregivers. Caregiving leads to physical problems (such as sleep problems) and psychological symptoms (e.g., depression, anxiety, and negative emotions). Loneliness is reported, and little peer-support. Many different tasks and roles must be undertaken, which is perceived as challenging. In addition, there is a financial impact and there are unmet needs to be met. Several domains of the lives of caregivers of AYA cancer patients are negatively affected by the disease. Some of these are age-specific, and tailored to a particular group of caregivers (parents, partners, or friends). AYA cancer patients represent a wide age range, resulting in the engagement of many different caregivers. Future research will need to take this into account in order to adequately provide support.

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Section: Resultsmentioning

confidence: 99%

“…These difficulties primarily came from being busy with what had to be arranged for the patient (e.g., where the patient had to go or what medication had to be given). In addition, caregivers often had little time to rest between responsibilities, and therefore woke up earlier to complete all of their tasks [ 22 ].…”

Section: Resultsmentioning

confidence: 99%

Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs

Reuvers,

Gedik,

Way

et al. 2023

Cancers

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“…Generally, relatives’ involvement in a patient’s disease and treatment trajectory is associated with better patient health outcomes, including improved physical, cognitive, emotional, and psychological well-being; higher satisfaction with the quality of care and treatment; and greater patient safety, including feeling safer during hospitalization 23–26 . Involving patients and their relatives in treatment can substantially improve economic outcomes as well 19 . Different definitions and terminologies describe the concept of involvement , but in this review, we define involvement as relatives’ participation in making decisions about care and treatment, including sharing knowledge and information 27 .…”

Section: Introductionmentioning

confidence: 99%

“…The burden on relatives is multifaceted, and research has shown that relatives often neglect their own physical, emotional, and social needs 14–17 . The most common symptoms reported by relatives are disturbed sleep, 18,19 stress, anxiety, 6,20 and social isolation 21 . Additionally, relatives of patients with an MBT experience a reduced quality of life compared with relatives of patients with other kinds of brain tumors 21 .…”

Section: Introductionmentioning

confidence: 99%

Wants and needs for involvement reported by relatives of patients with a malignant brain tumor: a scoping review

Guldager

Nordentoft

Poulsen

et al. 2023

JBI Evidence Synthesis

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Objective: This scoping review identifies and maps the breadth of available evidence on relatives’ wants and needs for involvement throughout the course of the disease of patients with a malignant brain tumor. Introduction: Patients diagnosed with a malignant brain tumor often have a poor prognosis, including a rapid progression of the disease, with changing physical, cognitive, and psychosocial symptoms. The caregiver burden is described as multifaceted, and relatives often neglect their own physical, emotional, and social needs. Inclusion criteria: This review included studies that defined or assessed the wants and needs for involvement of relatives of patients with a malignant brain tumor throughout the disease and treatment trajectory. The populations were relatives of patients with a malignant brain tumor in various settings. Methods: The JBI methodology for scoping reviews was employed in accordance with a previously published a priori protocol. An extensive search was conducted in the MEDLINE (PubMed), CINAHL (EBSCO) and Embase (Ovid). Gray literature was searched for using Grey Matters (CADTH) and BASE. The initial search was conducted in February 2020 and updated in March 2022. This review was limited to studies published since January 2010 in English, German, or Scandinavian languages. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. Textual data mapping of wants and needs for involvement were synthesized narratively using a basic qualitative content analysis The review findings are reported in this paper as a descriptive summary, with tables and figures to support the data. Results: The search identified 3830 studies, of which 10 were included. The studies were conducted in 6 countries and were published between 2010 and 2018. In total, 4 studies applied a qualitative study design that used semi-structured interviews, 2 studies applied a mix-method design that used questionnaires and semi-structured interviews, 1 study applied a multi-method design, and 3 studies used a quantitative survey. Research was conducted in a variety of settings, from an inpatient neurology center/neuro-oncology to post-bereavement. The findings showed that most of the relatives’ needs were related to the caregiver role. The relatives were actively involved in the patients’ disease and treatment trajectories. However, relatives were often required to adopt the caregiver role and a large amount of responsibility at short notice. Thus, they expressed their need for a stronger connection with health care professionals because their needs changed as rapidly as the disease progressed. Relatives also had a need related to maintaining hope, which was essential for their involvement, and their wants for involvement in the patients’ disease and treatment trajectories depended on a significant and timely amount of information. Conclusions: The findings reveal that relatives are actively involved in the patients’ disease and treatment trajectories. The relatives want and need support for their involvement, and these desires are related directly to the accessibility and availability of health care professionals, as the demands placed on them change rapidly throughout the progression of the disease. One way to address relatives’ wants and needs might be to further strengthen the relationship between the relatives and health care professionals. Supplemental Digital Content: A Danish-language version of the abstract of this review is available as Supplemental Digital Content [http://links.lww.com/SRX/A26].

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“…Over the last decades, treatment developments have contributed to a markedly improved overall 5-year survival rate approaching 75% (Lannering et al, 2009 ; Gatta et al, 2014 ; Desandes et al, 2020 ). However, children now face significant long-term morbidity, including sleep disorders, with detrimental impact on everyday functioning and quality of life (Pickering et al, 2017 ; Jeon et al, 2021 ) that may be due to the tumor type, tumor location, or treatment (typically a combination of surgery, chemotherapy, and/or radiotherapy).…”

Section: Introductionmentioning

confidence: 99%

Systematic Review: Sleep Disorders Based on Objective Data in Children and Adolescents Treated for a Brain Tumor

et al. 2022

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BackgroundTumors of the central nervous system (CNS) are the most common solid childhood malignancy. Over the last decades, treatment developments have strongly contributed to the improved overall 5-year survival rate, which is now approaching 75%. However, children now face significant long-term morbidity with late-effects including sleep disorders that may have detrimental impact on everyday functioning and quality of life. The aims of this study were to (1) describe the symptoms that lead to polysomnographic evaluation; (2) describe the nature of sleep disorders diagnosed in survivors of childhood CNS tumor using polysomnography (PSG); and (3) explore the association between tumor location and diagnosed sleep disorder.MethodsAn extensive literature search following the Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines (PRISMA) was conducted. Inclusion criteria were children and adolescents diagnosed with a CNS tumor age <20 years having a PSG performed after end of tumor treatment. The primary outcome was sleep disorder confirmed by PSG.ResultsOf the 1,658 studies identified, 11 met the inclusion criteria. All the included articles were appraised for quality and included in the analysis. Analyses indicated that sleep disorders commonly occur among childhood CNS tumor survivors. Symptoms prior to referral for PSG were excessive daytime sleepiness (EDS), fatigue, irregular breathing during sleep and snoring. The most common sleep disorders diagnosed were sleep-related breathing disorders (i.e., obstructive sleep apnea) and central disorders of hypersomnolence (i.e., narcolepsy).ConclusionOur findings point to the potential benefit of systematically registering sleep disorder symptoms among CNS tumor patients together with tumor type and treatment information, so that at-risk patients can be identified early. Moreover, future rigorous and larger scale controlled observational studies that include possible modifiable confounders of sleep disorders such as fatigue and obesity are warranted.Clinical Trial Registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021243866, identifier [CRD42021243866].

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Understanding sleep disturbance in the context of malignant brain tumors: a qualitative analysis

Cited by 7 publications

References 29 publications

Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs

Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs

Wants and needs for involvement reported by relatives of patients with a malignant brain tumor: a scoping review

Systematic Review: Sleep Disorders Based on Objective Data in Children and Adolescents Treated for a Brain Tumor

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