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Decision making

The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study

Aim: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. Background: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging.

Mon, 09/10/2018 - 11:50

End-of-life care of elderly patients with dementia: A cross-sectional study of family carer decision-making

Background: Dementia syndromes pose a major worldwide challenge to public health.

Wed, 06/06/2018 - 15:14

Family Caregivers' Reflections on Experiences of Assisted Suicide in Switzerland: A Qualitative Interview Study.

Context:Thousands of family members worldwide are annually involved in assisted dying. Family participation in assisted dying has rarely been investigated and families' needs typically are not considered in assisted dying legislation and clinical guidelines. Objectives: To explore family caregivers' reflections on experiences of assisted suicide in Switzerland. Methods: A cross-sectional qualitative interview study conducted in the Italian- and French-speaking regions of Switzerland.

Wed, 06/06/2018 - 12:10

Involved, inputting or informing: 'Shared' decision making in adult mental health care

Background A diagnosis of serious mental illness can impact on the whole family. Families informally provide significant amounts of care but are disproportionately at risk of carer burden when compared to those supporting people with other long-term conditions. Shared decision making (SDM) is an ethical model of health communication associated with positive health outcomes; however, there has been little research to evaluate how routinely family is invited to participate in SDM, or what this looks like in practice.

Wed, 06/06/2018 - 10:20

Factors affecting the decision to place a relative with dementia into residential care

AIM: To find out the reasons why carers might decide that they could not continue caring for a relative with dementia at home. METHOD: Semi-structured interviews with carers of relatives who have dementia, before placing their relatives into residential care and then again four months after that placement. N=4. RESULTS: Wandering, aggression, incontinence and physical dependency in people who have dementia are factors that might lead carers to consider placing their relatives into residential care; stress associated with Christmas can be another influencing factor.

Thu, 07/20/2017 - 15:23

Carers' quality of life and experiences of adult social care support in England

Informal carers make a vital contribution to the well-being of the people they care for or look after. Against the policy background in England, the purpose of this study was to explore the views of carers who are in contact with adult social care support services. A qualitative study with 31 carers, who were recruited via local authorities and carers' organisations, was conducted between April and July 2012 to collect data on carers' experiences and perceptions of their quality of life (QoL) with and without adult social care and support for themselves or the person they look after.

Thu, 07/20/2017 - 15:23

Which outcomes should we measure in adult epilepsy trials? The views of people with epilepsy and informal carers

Objective: So that informed treatment decisions can be made, clinical trials need to evaluate treatments against domains that are important to people with epilepsy (PWE), their carers, and clinicians. Health professionals have identified domains of importance to them via the International League Against Epilepsy's Commission on Outcome Measurement (COME). However, patients and carers have not been systematically asked.

Thu, 07/20/2017 - 15:23

'Deferred or chickened out?' Decision making among male carers of people with dementia

In this paper, we present new insight into the ways in which carers of people with dementia make decisions in the context of seemingly declining autonomy and freedom associated with the condition. Our focus is on the ways in which carers reflect on decisions made in different temporal contexts (day-to-day, medium- and long term). Drawing on data and analysis from in-depth interviews with male informal carers of women with mild to moderate dementia living in the northwest of England, we outline how the decision-making process is dependent on the temporality of the decisions.

Thu, 07/20/2017 - 15:22

The ethical evaluation of assistive technology for practitioners: a checklist arising from a participatory study with people with dementia, family and professionals

Purpose – Uncertainty over ethical impact may hinder uptake of assistive technology (AT) in dementia. This study aims to examine whether AT contributes to person‐centred care, whether users can participate in research and to explore ethical dilemmas with users, family and professional carers.

Thu, 07/20/2017 - 15:21

The carer's role in planning care for people with dementia

For the past 15 years a central theme of government health-care policy has been to encourage the health service to change the way it relates to those who use it. Recent health policy documents such as Our National Health: A plan for action, a plan for change (Scottish Executive, 2000) emphasise a more integrated way of working that reflects co-operative partnerships.

Thu, 07/20/2017 - 15:21