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On the way home: a BCI-FES hand therapy self-managed by sub-acute SCI participants and their caregivers: a usability study

Background: Regaining hand function is the top priority for people with tetraplegia, however access to specialised therapy outwith clinics is limited. Here we present a system for hand therapy based on brain-computer interface (BCI) which uses a consumer grade electroencephalography (EEG) device combined with functional electrical stimulation (FES), and evaluate its usability among occupational therapists (OTs) and people with spinal cord injury (SCI) and their family members.

Thu, 06/09/2022 - 14:05

Needs of patients with dementia and their caregivers in primary care: lessons learned from the Alzheimer plan of Quebec

Background: Persons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers’ met and unmet needs and to describe their experience.

Thu, 06/09/2022 - 12:18

A national survey of caregiver’s own experiences and perceptions of U.S. health care system when addressing their health and caring for an older adult

Background: Caregiving is a demanding role that can negatively impact a person’s health and well-being. As such, adequate access to health care is important for maintaining the family caregiver’s own personal health. Objectives: The aims of this study were to identify if family caregivers of older adults had more difficulty accessing health care services than non-caregivers and to identify if family caregivers felt access to additional services would be beneficial for maintaining their own personal health care.

Thu, 06/09/2022 - 10:43

Mortality communication and post-bereavement depression among Danish family caregivers of terminal cancer patients

Purpose: Depression is the most common negative reaction among family caregivers of terminal cancer patients, persisting to post-bereavement. A modifiable factor associated with depression is mortality communication (i.e., caregiver-relative communication about illness and impending death).

Wed, 06/08/2022 - 19:21

Mental Health and Neurodevelopmental Disorders: Examining the Roles of Familism, Social Support, and Stigma in Latinx Caregivers

Background: Those caring for someone diagnosed with a neurodevelopmental disorder are at risk of experiencing depression and anxiety. However, limited research has examined risk and predictive factors associated with internalizing symptomatology in caregivers from ethnic and culturally diverse backgrounds. Aims: We aimed to identify predictive factors for internalizing symptomatology.

Wed, 06/08/2022 - 14:53

“Like filling a lottery ticket with quite high stakes”: a qualitative study exploring mothers’ needs and perceptions of state-provided financial support for a child with a long-term illness in Finland

Background: A child’s long-term illness or disability is always a serious matter that impacts the whole family. Costs related to an illness can substantially affect a family’s financial situation. To date, there is little research on how parents experience available support for financial assistance. Surveys in Finland have found that families of children with long-term illnesses and disabilities could experience financial struggle and perceive the state provided financial support system as too complex.

Tue, 06/07/2022 - 16:34

Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England

Background: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them.

Tue, 06/07/2022 - 16:03

Life is different now – impacts of eating disorders on Carers in New Zealand: a qualitative study

Background: Eating disorders are widely recognized as serious illnesses, with complex psychological and physiological comorbidities. Affected individuals face a protracted and challenging treatment journey which, particularly for children and adolescents, requires significant input from family members as carers. This study investigated the perspectives and experiences of those caring for family members with an eating disorder diagnosis.

Tue, 06/07/2022 - 15:57

Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients

Objectives: To describe communication regarding cancer patient's end-of-life (EoL) wishes by physicians and family caregivers. Methods: An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. Results: For 138 deceased patients we obtained responses from physicians and family caregivers.

Mon, 06/06/2022 - 23:55

Intergenerational caring: a systematic literature review on young and young adult caregivers of older people

Background: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. Methods: This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers.

Mon, 06/06/2022 - 21:10

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