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'It's a traumatic illness, traumatic to witness': a qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T‐cell lymphoma

Background: Cutaneous T‐cell lymphomas (CTCL) are rare cancers, which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement. Objectives: To explore the experiences of bereaved family caregivers of patients with CTCL.

Mon, 06/03/2019 - 13:48

Experiences of bereaved family caregivers of patients with CTCL

Summary: Cutaneous T‐cell lymphomas (CTCL) are rare types of skin cancer. Skin may develop tumours or ulcers. Sometimes these may cover quite large areas and feel itchy or uncomfortable. Internal body parts may be affected in more advanced disease. Only a few people are diagnosed each year (8 per million), so most GPs do not meet people with this disease. This study from the U.K. aimed to find out about the experiences of family or close friends of people who had died because of the disease (not all people with this disease die of it).

Mon, 06/03/2019 - 13:41

Comparative Effectiveness of 2 Interventions for Hispanic Caregivers of Persons with Dementia

Objectives: To compare the effectiveness of 2 caregiver interventions with known efficacy: the Resources for Enhancing Caregiver Health‐Offering Useful Treatment (REACH‐OUT) and the New York University Caregiver Intervention (NYUCI). Design: 1:1 randomized pragmatic trial. Setting: New York City. Participants: Informal Hispanic caregivers of persons with dementia (N=221; mean age 58.2, 82.8% female, 63.3% adult children, 31.7% spouses).

Thu, 05/30/2019 - 16:30

Perceived burden among spouse, adult child, and parent caregivers

Aims: To identify what factors are associated with the caregiver burden of spouse caregivers, adult child caregivers, and parent caregivers. Background: Caregivers often feel stressed and perceive caregiving as a burden. The caregiver burden has been little studied from the perspective of the personal relationship between caregiver and care recipient. Design: Cross‐sectional study.

Wed, 05/29/2019 - 12:36

Bidirectional relationship between caregiver burden and neuropsychiatric symptoms in patients with Alzheimer's disease: A narrative review

Objective: The aim of this review is to make a state of the art of the potential influence of neuropsychiatric symptoms (NPs) on caregiver stress and vice versa.; Methods: We searched PubMed and Google Scholar for potential eligible articles.; Results: Patients with Alzheimer's disease (AD) usually need high levels of care in all activities of daily living, most of them provided by family members, friends, or informal caregivers. Caregivers have to cope with both age-related conditions and dementia-related factors.

Wed, 05/29/2019 - 12:11

The influence of the individual neuropsychiatric symptoms of people with Alzheimer disease on family caregiver distress-A longitudinal ALSOVA study

<bold>Objectives: </bold>Family caregivers (FCs) face a variety of demands while caring for persons with Alzheimer disease (AD). Longitudinal studies identifying the specific AD-related neuropsychiatric symptoms (NPS) that contribute to FC distress are rare. We analyzed which NPS in association with care recipient and caregiver demographic factors are associated with FC psychological distress over a 36-month follow-up period.<bold>Design: </bold>This is a longitudinal study with annual follow-up.

Wed, 05/29/2019 - 10:44

Family caregivers: Important but often poorly understood

An editorial is presented on the increase importance of family caregivers to improve healthcare outcomes. It highlights the health benefits of caregiving to reduce physical, emotional and financial strains particularly for individuals with chronic illness. It also cites the influence of several factors to the increase caregiver engagement of the nurses including health policy, practice and nursing education.

Tue, 05/28/2019 - 15:31

Empowerment of family caregivers of adults and elderly persons: A concept analysis

Aim This concept analysis defined and described the components of empowerment of family caregivers who care for adults and the elderly. Methods Rodgers evolutionary method of concept analysis was used. Data sources included Pub Med, CINAHL, Scopus, and Igaku Chuo Zasshi. Thirty articles published between 1995 and 2015 focusing on the empowerment of family caregivers providing care to adults and the elderly were selected. Result The analysis reveals 6 attributes, 5 antecedents, and 5 consequences.

Tue, 05/14/2019 - 19:51

Information-sharing with respite care services for older adults: a qualitative exploration of carers' experiences

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information-sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information-sharing between carers, older people and respite services.

Tue, 05/14/2019 - 15:46

Using a Flexible Diary Method Rigorously and Sensitively With Family Carers

Health and social science researchers are increasingly interested in the range of new possibilities and benefits associated with diary methods, particularly using digital devices. In this article, we explore how a flexible diary method, which enables participants to choose the device (i.e., paper notebook, tablet, or computer) and medium (i.e., text, photographs, sketches) through which they narrate their experiences, can be used to promote sensitive and rigorous research engagement with family carers to people with dementia.

Tue, 05/14/2019 - 13:10

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