Sleep problems in advanced cancer patients and their caregivers: Who is disturbing whom?

Chen, Qi; Terhorst, Lauren; Lowery-Allison, Amy E.; Cheng, Hannah; Tsung, Allan; Layshock, Mikhaila; Buysse, Daniel J.; Geller, David A.; Marsh, J. Wallis; Wang, Yisi

doi:10.1007/s10865-019-00088-3

Cited by 19 publications

(15 citation statements)

References 52 publications

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“…These data are similar to previously reported rates of cancer‐related fatigue among other patients (59%–100%) 23 and caregivers (18%–76%) 24 . In addition, sleep problems were also a concern for 60.3% of patients, similar to ranges seen in other research 25 . However, sleep problems of caregivers (53.6%) were lower than reported in a review of sleep disturbances among caregivers of patients with advanced cancer (72%) 26 …”

Section: Discussionsupporting

confidence: 88%

Symptom distress and quality of life among Black Americans with cancer and their family caregivers

Ellis

Hecht

et al. 2021

Psycho-Oncology

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Objective Black Americans are disproportionately affected by cancer and chronic diseases. Black patients with cancer and their family caregivers may concurrently experience symptoms that influence their wellbeing. This study investigates the influence of mental and physical symptom distress on quality of life (QOL) among Black Americans with cancer and their family caregivers from a dyadic perspective. Methods One hundred and fifty‐one dyads comprised of a Black American with breast, colorectal, lung or prostate cancer and a Black family caregiver were included in this secondary analysis of pooled baseline data from three studies. Self‐reports of problems managing 13 symptoms were used to measure mental and physical symptom distress. Descriptive statistics and the actor‐partner interdependence model were used to examine symptom prevalence and the influence of each person's symptom distress on their own and each other's QOL. Results Fatigue, sleep problems, pain and mental distress were prevalent. Patients and caregivers reported similar levels of mental distress; however, patients reported higher physical distress. Increased patient mental distress was associated with decreased patient QOL (overall, emotional, social, functional). Increased patient physical distress was associated with decreased patient QOL (overall, physical, emotional, functional) and decreased caregiver emotional wellbeing. Increased caregiver mental distress was associated with decreased caregiver QOL (overall, emotional, social, functional) and decreased patient overall QOL. Increased caregiver physical distress was associated with decreased caregiver QOL (overall, physical, functional), decreased patient emotional wellbeing, and better patient social wellbeing. Conclusions Supporting symptom management in Black patient/caregiver dyads may improve their QOL.

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Section: Discussionsupporting

confidence: 88%

Symptom distress and quality of life among Black Americans with cancer and their family caregivers

Ellis

Hecht

et al. 2021

Psycho-Oncology

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“…The physical health of family members caring for their relative was impacted by poor sleep quality [59][60][61][62][63][64]. Meltzer et al [61] found that parents of ventilatorassisted children experienced shorter sleep duration and greater variability in sleep quality impacting their physical health compared to parents of healthy children.…”

Section: Sleepmentioning

confidence: 99%

“…In the mothers of children with Duchenne muscular dystrophy, impaired sleep quality was related to the disease duration [62], while the sleep disturbance in the parents of children with atopic disease was related to the children's sleep disruption [63]. The partners of cancer patients experienced poor sleep quality: there was a significant correlation between patients' and their partners' sleep quality and sleep onset latency [60]. Although partners used medication to minimise the negative impact of sleep problems, Chen et al [60] argue that this could have affected their ability to respond to the needs of the patient, indicating that many family members may be hesitant to use drugs to aid sleep.…”

Section: Sleepmentioning

confidence: 99%

“…The partners of cancer patients experienced poor sleep quality: there was a significant correlation between patients' and their partners' sleep quality and sleep onset latency [60]. Although partners used medication to minimise the negative impact of sleep problems, Chen et al [60] argue that this could have affected their ability to respond to the needs of the patient, indicating that many family members may be hesitant to use drugs to aid sleep.…”

Section: Sleepmentioning

confidence: 99%

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Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

Shah

Ali

Finlay

et al. 2021

Health Qual Life Outcomes

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Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

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“…Because most caregivers are not sufficiently equipped with skills and information to provide care for their patients, they often suffer from symptoms of depression and anxiety, which impacts their ability to concentrate (12,13) and therefore function optimally. Furthermore, caregiver symptoms have been found to concurrently impact patient clinical and mental health outcomes, given the heavy reliance on caregivers for managing patient symptoms and providing support (14). As a result, there is an increasing demand for understanding and meeting caregivers' needs through the application of caregiver-focused tools or instruments that provide information and support for a wide range of problems including psychological (15).…”

Section: Introductionmentioning

confidence: 99%

Online interventions geared toward increasing resilience and reducing distress in family caregivers

Shin

Choi

2020

Current Opinion in Supportive &Amp; Palliative Care

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Purpose of review-Family caregivers of patients with cancer often spend a great deal of effort on physically and emotionally demanding work while taking care of patients. However, the majority of caregivers are not properly equipped for their role as caregivers, which may lead to increased distress in both caregivers and patients. Herein, we reviewed the recent literature (last three years) examining online interventions that seek to support caregiver resilience and decrease distress. Recent findings-Our search identified interventions involving three main themes: informational support, positive activities, and social support. These are mostly in the form of webbased tools and mobile apps targeting both usability and quality of life (QOL). Social network services (SNS) is also considered in this review as a new environment for caregivers to connect with other individuals with lived experience in similar circumstances. Summary-Existing studies on online interventions to support caregivers is still at a formative development stage and pilot tests of feasibility, rather than a substantive body of randomized controlled trials to assess the impact in different user populations, or to determine specific factors that impact caregiver distress level or resilience. More research is needed to further assess the long-term effects of online interventions on caregiver stress and resilience. Also, the role of different types of social network services and new forms of interaction, such as conversational agents, has not yet been fully investigated in caregiver populations. Future research should strive to seek new modes of providing services that may present novel opportunities to enhance caregiver resilience and reduce distress.

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Sleep problems in advanced cancer patients and their caregivers: Who is disturbing whom?

Cited by 19 publications

References 52 publications

Symptom distress and quality of life among Black Americans with cancer and their family caregivers

Symptom distress and quality of life among Black Americans with cancer and their family caregivers

Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

Online interventions geared toward increasing resilience and reducing distress in family caregivers

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