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PATIENTS' attitudes

Who Cares About Care? Family Members as Moral Actors in Treatment Decision Making

The article focuses on the discussion by highlighting the role of family members as moral actors within and beyond the hospital setting. Topics include the commentary draws on concepts of intersectoral care and family ethics as well as on our own research in the long-term home care setting, the background of demographic changes and shifts in morbidity structures, and the family caregivers often accept care takeover without hesitation.

Fri, 01/22/2021 - 16:16

Underestimated caregiver burden by cancer patients and its association with quality of life, depression and anxiety among caregivers

This study examined how patients with cancer estimate caregiver burden (CB) and the association between their underestimation of CB and their caregivers' self‐ratings of their quality of life (CQOLC‐K; Korean version of the Caregiver Quality of Life Index‐Cancer), depression and anxiety (Korean version of the Hospital Anxiety and Depression Scale). Participants consisted of 990 patient‐caregiver dyads recruited from a nationwide cross‐sectional survey conducted in South Korea. Medical baseline data were retrieved from the hospital information systems of the participating centres.

Tue, 11/20/2018 - 12:53

End-of-life care: A qualitative study comparing the views of people with dementia and family carers

Background: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. Aim: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. Design: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed.

Mon, 11/19/2018 - 16:27

Australian family carer responses when a loved one receives a diagnosis of Motor Neurone Disease—“Our life has changed forever”

While the experiences of family members supporting a person with a terminal illness are well documented, less is known about the needs of carers of people with neurological diseases, in particular, Motor Neurone Disease (MND). This paper describes the qualitative data from a large Australian survey of family carers of people with MND, to ascertain their experiences of receiving the diagnosis. The aim of the study was to describe the experiences of family carers of people with MND in receiving the diagnosis in order to inform and improve ways in which the diagnosis is communicated.

Fri, 11/16/2018 - 10:49

The development of service user-led recommendations for health and social care services on leaving hospital with memory loss or dementia - the SHARED study

Background Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services. Objective To develop service user-led recommendations enabling smooth transition for people living with memory loss from acute hospital to community.

Wed, 10/31/2018 - 15:25

Challenges in supporting lay carers of patients at the end of life: results from focus group discussions with primary healthcare providers

Background: Family caregivers (FCGs) of patients at the end of life (EoL) cared for at home receive support from professional and non-professional care providers. Healthcare providers in general practice play an important role as they coordinate care and establish contacts between the parties concerned. To identify potential intervention targets, this study deals with the challenges healthcare providers in general practice face in EoL care situations including patients, caregivers and networks.

Wed, 10/24/2018 - 09:27

Patient perspectives on navigating the field of traumatic brain injury rehabilitation: a qualitative thematic analysis

Purpose: This study aimed to provide an understanding of the lived experience of rehabilitation in adults with traumatic brain injury (TBI) from hospital discharge up to four years post-injury. Materials and methods: We used a qualitative explorative design with semi-structured in-depth interviews. Twenty participants with TBI were included from a level I Trauma Center in Denmark at 1-4 years post-injury. Qualitative thematic analysis was applied for data analysis.

Tue, 10/16/2018 - 15:59

Attitudes towards euthanasia in the context of fear of death among physiotherapists and caregivers of patients with paresis

Background: The permissibility of euthanasia raises many moral dilemmas, dividing the general public on this matter. Attitudes towards euthanasia depend on socio-cultural (age, beliefs) and individual factors (personality traits or working in medical professions). Aim of the study: The aim of the study was to establish attitudes towards euthanasia and the level of anxiety before death among people in close contact with persons suffering from paresis.

Tue, 10/16/2018 - 15:04

Evaluation of a West Australian residential mental health respite service

Family members continue to be the predominant providers of support, care and accommodation for loved ones with mental health issues, and empirical studies suggest that accessing mental health respite can be helpful for both carers and consumers. However, the availability of, and access to, this respite in Australia is far from optimal. Major issues have also been identified such as low utilisation, the inappropriate and inflexible nature of services and the inability of services to respond to situations where multiple needs exist.

Tue, 10/16/2018 - 14:05

Understanding experiences of undergoing transcatheter aortic valve implantation: one-year follow-up

Background: Transcatheter aortic valve implantation (TAVI) is the treatment of choice for frail, older adults with severe symptomatic aortic stenosis. Although research about long-term clinical outcomes is emerging, there is limited evidence from the perspectives of patients and family caregivers on their perceived benefits and challenges after TAVI. Aims: The aim of this study was to describe older adults and family caregivers’ perspectives on undergoing TAVI at one year post-procedure.

Thu, 08/30/2018 - 11:28