The Family Caregiving Crisis Meets an Actual Pandemic

Kent, Erin E.; Ornstein, Katherine; Dionne‐Odom, J. Nicholas

doi:10.1016/j.jpainsymman.2020.04.006

Cited by 145 publications

(188 citation statements)

References 5 publications

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“…As in the closely related field of patient safely, consideration of the whole patient journey is vital [ 42 ]. Our finding is particularly important at a time when carers are being asked to do more, due to self- and family isolation for older people as a result of the COVID-19 pandemic [ 43 ], including potentially to administer medicines [ 44 ].…”

Section: Discussionmentioning

confidence: 99%

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Higginson

Johnston

et al. 2020

BMC Med

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Background At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. Methods Mortality follow-back postal survey. Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). Participants: Informal carers (ICrs) of decedents who had received palliative care. Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. Results We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66–76 h per week from ICrs for ‘being on call’, 52–55 h for ICrs being with them, 19–21 h for personal care, 17–21 h for household tasks, 15–18 h for medical procedures and 7–10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. Conclusions Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

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Section: Discussionmentioning

confidence: 99%

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Higginson

Johnston

et al. 2020

BMC Med

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“…Patients with COVID-19 and their relatives face a set of major stressors (3). These include social distancing from their loved ones, which increases a sense of uncertainty regarding their health status, and increased family-care burdens and economic stressors (3). The multitasking, uncertainty and strain that many patients and relatives struggle with, puts them at high risk for increased psychological distress.…”

Section: Introductionmentioning

confidence: 99%

Anxiety and Depression Symptoms in COVID-19 Isolated Patients and in Their Relatives

et al. 2020

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Background: While focusing on the management and care of COVID-19 patients, the mental health of these patients and their relatives is being overlooked. The aim of the current study was to measure anxiety and depression, and to assess their association with socio-demographic and pandemic-related stress factors in COVID-19 patients and their relatives during the initial stage of hospitalization. Methods: We assessed isolated hospitalized patients (N = 90) and their relatives (adults and children, N = 125) by phone, 25-72 h following patients' admission. The quantitative measures included the Anxiety and Depression modules of the Patient-Reported Outcomes Measurement Information System (PROMIS) and pandemic-related stress factors. Qualitative measures included questions exploring worries, sadness, and coping modes. Results: Both patients and relatives suffer from high levels of anxiety and related pandemic worries, with lower levels of depressive symptoms. Compared to adult relatives, child relatives reported significantly lower anxiety. The multivariable logistic regression analysis revealed an increased risk for anxiety among females and a decreased risk among ultra-orthodox participants. While increased anxiety among patients was associated with feelings of isolation, increased anxiety among relatives was associated with a feeling of not being protected by the hospital. Conclusions: Patients and relatives experience similar high anxiety levels which are more robust in women and lower in ultra-orthodox participants. Our findings indicate that anxiety symptoms of both patients and adult relatives should be addressed.

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“…During the pandemic, a family and caregivers centered care model has become the major care process for patients with chronic debilitating diseases [9]. Caregivers include any person (relative or friends) who is significantly associated with providing assistance to the patients with a chronic terminal illness [10].…”

Section: B Specific Needs and Solutions For Caregivers Of Cancer Patmentioning

confidence: 99%

“…The World Health Organization (WHO) has issued an interim guidance for care of infected people at home [32]. The high risk caregivers or caregivers with an infected family member at home should be considered for distribution of personal protective eqipments (PPE) [33]. Rest all the caregivers should use homemade masks and perform frequent hand hygiene [34].…”

Section: Support For Protecting the Caregivers From Infectionmentioning

confidence: 99%

Caring the Cancer Caregivers in the Era of COVID-19 Outbreak

Mishra¹,

Biswas

More³

et al. 2020

Asian Pac J Cancer Care

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As caring model of cancer patients has shifted to family centered model during the pandemic of COVID 19, it has caused immense increase in the needs of the caregivers. Thus, while providing a holistic care for cancer patients we need to understand the specific alterations in needs of caregivers due to pandemic. Thus, in this narrative review, we focus on addressing different needs of cancer caregivers in context of the on-going pandemic and preparedness strategy to meet those unmet needs.

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The Family Caregiving Crisis Meets an Actual Pandemic

Cited by 145 publications

References 5 publications

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

Anxiety and Depression Symptoms in COVID-19 Isolated Patients and in Their Relatives

Caring the Cancer Caregivers in the Era of COVID-19 Outbreak

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