“We Are Saving Their Bodies and Destroying Their Souls.”: Family Caregivers’ Experiences of Formal Care Setting Visitation Restrictions during the COVID-19 Pandemic

Abstract Purpose: Recent studies report daily fluctuations in stress among family caregivers of older individuals with dementia. Several studies focused on daily stressors or behavioral and psychological symptoms of dementia and use of adult day services. Most previous studies on daily fluctuations of caregivers’ stress have used a daily diary approach. This approach involves creating multiple daily reports, making it possible to examine between-person differences and within-person processes of change. However, only few studies used this approach for family caregivers in Asian countries. Therefore, this study examines the applicability of a daily diary approach for Japanese family caregivers and the effects of formal care services on their stress and depression. Methods: Participants were 13 family caregivers of individuals with dementia using formal care services in a rural area in Japan. They were assessed through self-administered questionnaires including use or nonuse of formal care services, caregiving stressors (DASC-8), depressive symptoms (K-6), and caregiving stress for 7 days. Generalized linear mixed models (GLMM) with data nested within persons were used to examine the effects of formal services on stress and depression. Results: For the GLMM procedure, this study used caregiving stressors and stress variables as fixed effects and participants as random effects. Results indicated that use of formal services significantly lowered caregivers’ stress and depression. Conclusion: The findings demonstrate the applicability of a daily diary approach and the effectiveness of formal services on the stress of Japanese family caregivers.

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Symptom Experiences: Perceptual Accuracy Between Advanced-Stage Cancer Patients and Family Caregivers in the Home Care Setting

Journal of Clinical Oncology ◽

10.1200/jco.2002.01.153 ◽

2002 ◽

Vol 20 (16) ◽

pp. 3495-3507 ◽

Cited By ~ 80

Author(s):

Michelle M. Lobchuk ◽

Lesley F. Degner

Keyword(s):

Home Care ◽

Cancer Patients ◽

Family Caregivers ◽

Care Setting ◽

Physical Symptoms ◽

Absolute Difference ◽

Advanced Stage ◽

Convenience Sample ◽

Symptom Experiences ◽

Advanced Stage Cancer

PURPOSE: This study used a comparative descriptive design to compare family caregivers’ and advanced-stage cancer patients’ perceptions of patients’ multidimensional symptom experiences on presence, frequency, severity, and distress. PATIENTS AND METHODS: A convenience sample of 98 dyads, composed of advanced-stage heterogeneous cancer patients and their caregivers, completed the Memorial Symptom Assessment Scale in the home care setting on a one-time basis. This scale is a 32-item Likert-type scale for assessing the presence, frequency, severity, and distress arising from symptoms in cancer patients. RESULTS: There was confirmation of trends previously described in related studies where, for example, caregivers tend to overreport on symptom experiences. However, the degree of absolute difference between patient and caregiver responses was normally around 1 unit (on a theoretical range of 0 to 4 units). Levels of patient-caregiver agreement were better on more concrete questions related to symptom frequency, severity, and distress than on broad questions related to the presence of a symptom. Patients and caregivers achieved better levels of agreement on physical versus psychological symptoms. CONCLUSION: The findings indicated that family caregivers can provide reasonable proxy or complementary reports on patient symptom experiences of frequency, severity, and distress. However, family caregivers have greater difficulty in achieving high levels of accuracy on psychological versus physical symptoms.

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Psychological and psychiatric symptoms of terminally ill patients with cancer and their family caregivers in the home-care setting: A nation-wide survey from the perspective of bereaved family members in Japan

Journal of Psychosomatic Research ◽

10.1016/j.jpsychores.2017.10.012 ◽

2017 ◽

Vol 103 ◽

pp. 127-132 ◽

Cited By ~ 6

Author(s):

Makoto Kobayakawa ◽

Asao Ogawa ◽

Michiko Konno ◽

Akiko Kurata ◽

Jun Hamano ◽

...

Keyword(s):

Home Care ◽

Family Caregivers ◽

Care Setting ◽

Psychiatric Symptoms ◽

Family Members ◽

Terminally Ill ◽

Patients With Cancer ◽

Terminally Ill Patients ◽

Nation Wide Survey ◽

Bereaved Family

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Resilience Among Dementia Family Caregivers in a Changing Social World

Innovation in Aging ◽

10.1093/geroni/igab046.032 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 9-9

Author(s):

Brandy McCann ◽

Karen Roberto ◽

Tina Savla ◽

Rosemary Blieszner ◽

Emily Hoyt

Keyword(s):

Family Caregivers ◽

Care Setting ◽

Social World ◽

Social Connections ◽

Social Worlds ◽

Social Situations ◽

Dementia Caregivers ◽

The Social ◽

Early Phases ◽

Roll Out

Abstract Dementia caregivers must manage the social worlds of their loved ones as well as their own. In a mixed methods study, we interviewed 50 family caregivers prior to the pandemic, twice during early phases of the pandemic, and again during the vaccine roll-out phase. Findings revealed how implementation of stay-at-home orders altered reliance on informal support as well as social ties and interactions. Using content analysis, we identified three ways in which caregivers’ managed changes in their social world: rethinking family visits (fewer people, higher quality); reinventing public spaces (church services, exercise venues); and reconsidering self-care (setting boundaries, solace in nature). Caregivers showed varying degrees of resilience in the ways they managed adverse social situations and cared for themselves. Findings reinforce the need for inclusive programs and services to help caregivers learn to maintain supportive social connections that reinforce their care decisions and routines, particularly during times of duress.

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Identifying the prevalence of unmet supportive care needs among family caregivers of cancer patients: an Italian investigation on home palliative care setting

Supportive Care in Cancer ◽

10.1007/s00520-021-06655-2 ◽

2022 ◽

Author(s):

Veronica Zavagli ◽

Melania Raccichini ◽

Rita Ostan ◽

Giacomo Ercolani ◽

Luca Franchini ◽

...

Keyword(s):

Palliative Care ◽

Supportive Care ◽

Cancer Patients ◽

Family Caregivers ◽

Care Setting ◽

Supportive Care Needs ◽

Care Needs ◽

Palliative Care Setting

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The place of family caregivers in a palliative care setting: perceptions of their role and relationship with health professionals

Palliative Medicine ◽

10.1177/026921639901300632 ◽

1999 ◽

Vol 13 (6) ◽

pp. 520-521 ◽

Cited By ~ 1

Author(s):

P C Smith ◽

S Payne

Keyword(s):

Palliative Care ◽

Family Caregivers ◽

Health Professionals ◽

Care Setting ◽

Palliative Care Setting

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Prerequisites for providing effective support to family caregivers within the primary care setting – results of a study series in Germany

BMC Family Practice ◽

10.1186/s12875-021-01601-x ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Julian Wangler ◽

Michael Jansky

Keyword(s):

Primary Care ◽

Family Caregivers ◽

Support Services ◽

Online Survey ◽

Care Setting ◽

Primary Care Setting ◽

Psychological Needs ◽

Care Recipient ◽

Current Status ◽

Good Time

Abstract Background General Practitioners are considered to be well placed to monitor home-care settings and to respond specifically to family caregivers. To do this, they must be sensitive to the needs and expectations of caregivers. In order to determine the current status of GP care in terms of the support given to family caregivers, a series of studies were conducted to gather the perspectives of both caregivers and GPs. The results are used to derive starting points as to which measures would be sensible and useful to strengthen support offered to family caregivers in the primary care setting. Methods Between 2020 and 2021, three sub-studies were conducted: a) an online survey of 612 family caregivers; b) qualitative interviews with 37 family caregivers; c) an online survey of 3556 GPs. Results Family caregivers see GPs as a highly skilled and trustworthy central point of contact; there are many different reasons for consulting them on the subject of care. In the perception of caregivers, particular weaknesses in GP support are the absence of signposting to advisory and assistance services and, in many cases, the failure to involve family caregivers in good time. At the same time, GPs do not always have sufficient attention to the physical and psychological needs of family caregivers. The doctors interviewed consider the GP practice to be well suited to being a primary point of contact for caregivers, but recognise that various challenges exist. These relate, among other things, to the timely organisation of appropriate respite services, targeted referral to support services or the early identification of informal caregivers. Conclusions GP practices can play a central role in supporting family caregivers. Caregivers should be approached by the practice team at an early stage and consistently signposted to help and support services. In order to support care settings successfully, it is important to consider the triadic constellation of needs, wishes and stresses of both the caregiver and the care recipient. More training and greater involvement of practice staff in the support and identification of caregivers seems advisable.

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Psychosis seminars: an open forum for service users, carers and professionals

BJPsych Open ◽

10.1192/bjpo.bp.116.003269 ◽

2016 ◽

Vol 2 (5) ◽

pp. 330-334 ◽

Cited By ~ 1

Author(s):

Justina Kaselionyte ◽

Aysegul Dirik ◽

Simon Tulloch ◽

Stefan Priebe ◽

Domenico Giacco

Keyword(s):

Mental Health ◽

Mental Health Professionals ◽

Care Setting ◽

Service Users ◽

Formal Care ◽

Health Issues ◽

Open Forum ◽

Neutral Space ◽

The Uk ◽

Learning From Others

BackgroundPsychosis seminars enable service users, their carers and mental health professionals to meet outside of a formal care setting, increase understanding of mental illness and help establish a dialogue.AimsTo explore feasibility of psychosis seminars in the UK and the experiences of participants.MethodSeven meetings attended by 25 people were held over a 3-month period. An open-ended questionnaire was returned by ten participants. Responses were subjected to content analysis.ResultsBenefits experienced were having an open forum for talking freely about mental health issues in a neutral space, learning from others about psychosis and hearing different views. Suggested adjustments were clarifying expectations of participants at the beginning, strengthening facilitation and increasing attendance.ConclusionsPsychosis seminars may help to establish a dialogue among users, carers and professionals and seem feasible in the UK, although adjustment to delivery can help their implementation.

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Informal Care of Dependent Elderly at Home — Some Swedish Experiences

Ageing and Society ◽

10.1017/s0144686x00003822 ◽

1991 ◽

Vol 11 (1) ◽

pp. 41-58 ◽

Cited By ~ 16

Author(s):

Lennarth Johansson

Keyword(s):

Family Caregivers ◽

Informal Care ◽

Family Members ◽

Rural Setting ◽

Formal Care ◽

Burden Of Care ◽

Perceived Burden ◽

Provision Of Care ◽

Dependent Elderly ◽

Elderly Family

ABSTRACTThis study is an attempt to explore the dynamics in a group of family caregivers in a small rural setting in Sweden. Thirty-nine caregivers giving extensive help to elderly family members, who were all on the verge of institutionalisation, were interviewed. The results showed that the motives of caring were usually based on feelings of reciprocity and that the perceived burden of care was related to the proximity of the carer to the person cared for. Despite the existence of a rather well-developed system of formal care, these resources were poorly coordinated with the informal provision of care.

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