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Journal article

Validation of a Comprehensive Measure of the Family Caregiver Experience: The Caregiver Reaction Scale

Objectives: The Caregiver Reaction Scale (CRS) is a multi-dimensional measure of the family caregiving experience that assesses role conflict, challenges, and positive aspects of caregiving. The CRS has been validated in a sample of older adult caregivers who sought counseling, but its validity and reliability in a broader population of caregivers had not been established.

Mon, 01/18/2021 - 18:26

Unmet needs of informal carers of the oldest old in Portugal

Oldest‐old individuals are a growing segment of the population that faces several challenges in terms of care demands. Informal caregivers experience more or less challenges, namely depending on the support they can access. The present study explores the unmet needs of a sample of informal caregivers of community‐dwelling older adults aged 80+ and analyses the association of such needs with sociodemographic information, care‐giving context (e.g., length of care),and health characteristics of the caregivers and care receivers (e.g., cognitive status and functionality).

Mon, 01/18/2021 - 18:16

Understanding the Experience of Cancer Pain From the Perspective of Patients and Family Caregivers to Inform Design of an In-Home Smart Health System: Multimethod Approach

Background: Inadequately managed pain is a serious problem for patients with cancer and those who care for them.

Mon, 01/18/2021 - 18:09

Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice: Managing Community Care

Purpose Many individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community. Design/methodology/approach Three focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India.

Mon, 01/18/2021 - 18:01

Time to care? The effects of retirement on informal care provision

This paper analyzes the impact of women's retirement on their informal care provision. Using SOEP data, we address fundamental endogeneity problems by exploiting variation in the German pension system in two complementary ways. We find a significant effect of retirement on informal care provision, when using early retirement age thresholds as instruments. Heterogeneity analyses confirm the underlying behavioral mechanism, a time conflict between labor supply and informal care.

Fri, 01/15/2021 - 12:51

Time for care: exploring time use by carers of older people

The paper focuses on temporal aspects of informal caring for older people. Limitations of large-scale surveys in capturing such data are noted and time-use methodology, despite its own limitations, is proposed as a promising alternative. Adopting a critical perspective on time that includes carers' own conceptualisations, we report the findings of a qualitative study of carers' time use. Sixty-two interviews with carers, male/female, co-resident/not co-resident, employed/not employed, and located across Great Britain were conducted.

Fri, 01/15/2021 - 12:35

'This is your golden time. You enjoy it and you've plenty time for crying after': How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – A qualitative study

Background: Dysphagia (swallowing impairments) is a well-recognised symptom of amyotrophic lateral sclerosis. Caring for a person with amyotrophic lateral sclerosis has been recognised as a complex and demanding task. No study to date investigated the impact of dysphagia on the lives of caregivers of people with amyotrophic lateral sclerosis. Aim: To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis.

Fri, 01/15/2021 - 12:30

Test of the stress process model of family caregivers of people living with schizophrenia in China

Across the world, people living with schizophrenia (PLS) are often cared for by family caregivers. This is especially true in China where community-based systems of care for PLS are underdeveloped. Thus, family caregivers of PLS may experience emotional distress and burden in the absence of community-based services. Pearlin (1990) proposed a highly influential model for understanding the stress process and its relationship to health and wellbeing. Although the model has been examined worldwide, it has yet to be studied in China for caregivers of PLS.

Fri, 01/15/2021 - 12:22

'Take more laxatives was their answer to everything': A qualitative exploration of the patient, carer and healthcare professional experience of constipation in specialist palliative care

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective.

Thu, 01/14/2021 - 14:48

Symptoms of mood disorders in family carers of older people with dementia who experience caregiver burden: a network approach

Background informal carers of people with dementia are at greater risk of anxiety and depressive disorders if they find caregiving to be a burden. The aim of this study was to use a network analysis of cross-sectional data to investigate the relationships between anxiety and depressive symptoms in family carers of older people with dementia who experience burden. Methods sixty family carers exhibiting high levels of burden using the Zarit Burden Interview were included in the study. Participants completed the Hospital Anxiety and Depression Scale.

Thu, 01/14/2021 - 12:51