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Journal article

“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma

Background: Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients’ high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement.

Mon, 06/06/2022 - 23:35

"It Wasn't Like We Expected": Analyzing (Non-)Participation of Family Caregivers of People With Dementia in Sports Activities From Different Perspectives

Background: Family caregivers of people with dementia represent a physically and psychologically burdened target group, which can benefit from offers of health promotion, but rarely use existing services. This article deals with the motives and conditions that induce this target group to be (not) active in sports. Methods: For this purpose, the perspectives of family caregivers and local sports clubs in Germany are compared to uncover similarities and discrepancies with the aim of developing target group-specific health promotion services.

Mon, 06/06/2022 - 23:28

Is the grass greener on the other side? The health impact of providing informal care in the UK and the Netherlands

Background: Facing rapidly ageing populations, many Western countries aim to stimulate informal care provision as a way to meet the growing long-term care (LTC) demand. While various studies report the impact of providing informal care on the health of caregivers, it is less clear whether and to what extent this impact differs across countries.

Mon, 06/06/2022 - 22:54

Is informal care sufficient to meet the long-term care needs of older people with disabilities in China? Evidence from the China Health and Retirement Longitudinal Survey

Background: Rapid demographic shifts and socio-economic changes are fuelling concerns over the inadequate supply of informal care - the most common source of care-giving for older people in China. Unmet long-term care needs, which are believed to cause numerous adverse effects on health, continue to increase. Methods: Drawing data from the 2015 wave of the China Health and Retirement Longitudinal Survey, this study explores the relationship between informal care provision and unmet long-term care needs among older people in China.

Mon, 06/06/2022 - 22:47

Involvement in self‐care and psychological well‐being of Spanish family caregivers of relatives with dementia

Background: The provision of continuous care to a dependent person can lead to a lack of self‐care by the caregiver themselves with corresponding low levels of well‐being. This well‐being has been analysed mostly from within the perspective of the hedonic tradition, with the development of personal growth often being overlooked.

Mon, 06/06/2022 - 22:35

Internet Access and Usage Among Stroke Survivors and Their Informal Caregivers: Cross-sectional Study

Background: Web-based interventions have shown promise for chronic disease management but have not been widely applied to populations with stroke. Existing barriers may inhibit the adoption of web-based interventions among stroke survivors and necessitate the involvement of informal caregivers. However, limited information is available on internet accessibility and usability among stroke survivors and their caregivers. Objective: This study aims to investigate internet access and usage in a cohort of stroke survivors and their caregivers.

Mon, 06/06/2022 - 21:26

Intergenerational familial care: Shaping future care policies for older adults

Background: An increasingly ageing society together with concerns about sustainability of old-age benefits call for reforming the care structure of many western welfare states. However, finding an acceptable balance between the formal care provided by institutions and informal care provided by family members is a delicate policy choice with profound ethical implications.

Mon, 06/06/2022 - 21:17

Interaction of caregiver-expressed emotions and neuropsychiatric symptoms in persons with dementia: a longitudinal cohort study

Background: Neuropsychiatric symptoms (NPS) have a major impact in persons with dementia (PwD). The interaction between the caregiver and the person with dementia may be related to the emergence of NPS. The concept of expressed emotion (EE) is used to capture this dyadic interaction. Objectives: The aim of the present study is to examine longitudinally the association between EE in caregivers and NPS in PwD living at home. Design: A longitudinal cohort study with 2 years of follow-up.

Mon, 06/06/2022 - 21:01

The Interaction Between Hematological Cancer Patients and Family Caregivers and Their Life Changes

Background: Diagnosis of hematological cancer affects patients and caregivers as a unit. Few studies have focused on the relationship between hematological cancer patients and their caregivers. Objective: To explore (a) the interaction between patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers and (b) perceived changes in lives of patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers.

Mon, 06/06/2022 - 18:57

Intention to use respite services among informal care-givers of frail older adults in China: the role of care needs change

Background: Population ageing in China calls for evidence-based solutions, especially in terms of fulfilling long-term care needs among frail older adults. Respite services are identified as effective resources for alleviating care-giver burden and promoting the wellbeing of both older adults and their family care-givers. However, respite care is often under-used in China. Objectives: This research aimed to examine factors associated with intention to use respite services among informal care-givers in Shanghai, mainland China.

Mon, 06/06/2022 - 18:50