Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey

Grande, Gunn; Rowland, Christine; Berg, Bernard van den; Hanratty, Barbara

doi:10.1177/0269216318793286

Cited by 62 publications

(66 citation statements)

References 36 publications

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“…The caregivers had worse overall MCS score than the general population sample, which is in line with previous findings that caregiving negatively affects the caregivers’ mental health. 23 – 26 Two of the previous studies used the SF-36 to assess mental health, 25 , 26 and our study confirmed poor mental health in caregivers in a prospective population-based study with a robust study design. Furthermore, we found that caregivers scored lower than the general population on all SF-36 mental health subscales.…”

Section: Discussionsupporting

confidence: 80%

Poor physical and mental health predicts prolonged grief disorder: A prospective, population-based cohort study on caregivers of patients at the end of life

Lenger¹,

Neergaard

Guldin

et al. 2020

Palliat Med

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Background: The health of caregivers can be affected during end-of-life caregiving. Previous cross-sectional studies have indicated an association between poor health status and prolonged grief disorder, but prospective studies are lacking. Aim: To describe physical and mental health status in caregivers of patients at the end of life, and to investigate whether caregivers’ health status during caregiving predict prolonged grief disorder. Design: A population-based prospective survey was conducted. Health status was measured in caregivers during caregiving (SF-36), and prolonged grief disorder was assessed 6 months after bereavement (Prolonged Grief-13). We calculated mean scores of health status and explored the association with prolonged grief disorder using logistic regression adjusted for age, gender and education. Setting/participants: The health in caregivers of patients granted drug reimbursement due to terminal illness in Denmark in 2012 was assessed during caregiving and 6 months after bereavement ( n = 2125). Results: The SF-36 subscale ‘role-physical’ concerning role limitations due to physical health, the ‘mental health’ component score, and all ‘mental health’ subscales showed significantly worse health in the participants than in the general population. Both poor physical health (adjusted OR: 1.05 (95% CI: 1.04–1.07)) and poor mental health (adjusted OR: 1.09 (95% CI: 1.07–1.11)) predicted prolonged grief disorder. Conclusion: Caregivers scored lower on one physical subscale and all mental health measures than the general population. Prolonged grief disorder was predicted by poor physical and mental health status before bereavement. Future research is needed on the use of health status in systematic assessment to identify caregivers in need of support.

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Section: Discussionsupporting

confidence: 80%

Poor physical and mental health predicts prolonged grief disorder: A prospective, population-based cohort study on caregivers of patients at the end of life

Lenger¹,

Neergaard

Guldin

et al. 2020

Palliat Med

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“…Most older patients with cancer live at home and depend on informal caregivers for support with cancer treatment, symptom management, and activities of daily living . Clinicians often focus on the health of the patients, whereas informal caregivers are subjected to a significant amount of stress that can adversely affect their own physical and emotional health …”

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confidence: 99%

“…4,5 Clinicians often focus on the health of the patients, whereas informal caregivers are subjected to a significant amount of stress that can adversely affect their own physical and emotional health. [6][7][8] As the cancer progresses, the level of care burden increases for the caregiver and can profoundly worsen caregivers' quality of life (QOL). 9,10 The role of caregiving itself impacts the emotional health of the caregivers; many studies demonstrate that caregivers experience even more emotional health challenges (eg, anxiety, depression, distress) than the patients they are caring for.…”

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confidence: 99%

Quality of Life of Caregivers of Older Patients with Advanced Cancer

Kehoe

Duberstein

et al. 2019

J American Geriatrics Society

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OBJECTIVES To evaluate the relationships between aging‐related domains captured by geriatric assessment (GA) for older patients with advanced cancer and caregivers’ emotional health and quality of life (QOL). DESIGN In this cross sectional study of baseline data from a nationwide investigation of older patients and their caregivers, patients completed a GA that included validated tests to evaluate eight domains of health (eg, function, cognition). SETTING Thirty‐one community oncology practices throughout the United States. PARTICIPANTS Enrolled patients were aged 70 and older, had one or more GA domain impaired, and had an incurable solid tumor malignancy or lymphoma. Each could choose one caregiver to enroll. MEASUREMENTS Caregivers completed the Generalized Anxiety Disorder‐7, Distress Thermometer, Patient Health Questionnaire‐2 (depression), and Short Form Health Survey‐12 (SF‐12 for QOL). Separate multivariate linear or logistic regression models were used to examine the association of the number and type of patient GA impairments with caregiver outcomes, controlling for patient and caregiver covariates. RESULTS A total of 541 patients were enrolled, 414 with a caregiver. Almost half (43.5%) of the caregivers screened positive for distress, 24.4% for anxiety, and 18.9% for depression. Higher numbers of patient GA domain impairments were associated with caregiver depression (adjusted odds ratio [aOR] = 1.29; P < .001], caregiver physical health on SF‐12 (regression coefficient [β] = −1.24; P < .001), and overall caregiver QOL (β = −1.14; P < .01). Impaired patient function was associated with lower caregiver QOL (β = −4.11; P < .001). Impaired patient nutrition was associated with caregiver depression (aOR = 2.08; P < .01). Lower caregiver age, caregiver comorbidity, and patient distress were also associated with worse caregiver outcomes. CONCLUSION Patient GA impairments were associated with poorer emotional health and lower QOL of caregivers. J Am Geriatr Soc 67:969–977, 2019.

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“… 4 , 5 Carers supporting palliative patients at home face substantial demands upon their time, and upon their mental and physical health. 6 – 9 In the coming decades, more people will be dying at home with increasingly complex care needs. 10 , 11 Recent European work has highlighted the need for family carers to be recognised as part of the ‘unit of care’, but carer support often occurs ad hoc rather than being systematic within health systems.…”

Section: Introductionmentioning

confidence: 99%

A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life

et al. 2020

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Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers’ support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely. Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life. Design: Longitudinal qualitative study with thematic analysis. Setting/participants: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention. Results: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the ‘right’ people to implement the intervention and (3) practical implementation challenges. Conclusions: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.

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Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey

Cited by 62 publications

References 36 publications

Poor physical and mental health predicts prolonged grief disorder: A prospective, population-based cohort study on caregivers of patients at the end of life

Poor physical and mental health predicts prolonged grief disorder: A prospective, population-based cohort study on caregivers of patients at the end of life

Quality of Life of Caregivers of Older Patients with Advanced Cancer

A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life

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