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Decision-Making

Online resources for family caregivers of cognitively competent patients: A review of user-driven reputable health website content on caregiver communication with health professionals

Objective: Most patients want their family involved in consultations and decisions, however some family caregivers report feeling overwhelmed and unsure of their role. As caregivers are increasingly looking to medical websites for guidance, this study aimed to review reputable web-resources available to inform family caregivers on how to be involved in medical consultations and decisions. Methods: Google searches were performed using lay search strings, to imitate how a cancer caregiver may locate information.

Tue, 04/06/2021 - 11:26

A qualitative study of family carers views on how end-of-life communication contributes to palliative-oriented care in nursing home

Background: Although family-centered communication about end-of-life care has been recognized to promote palliative-oriented care in nursing home (NH), how this communication may work is still unknown. Therefore, we explored the mechanisms by which end-of-life communication may contribute to palliative-oriented care in NH from the perspective of bereaved family carers.; Methods: A descriptive qualitative design was performed.

Sun, 12/13/2020 - 17:58

"It's Like a Death Sentence but It Really Isn't" What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

Background: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making.

Fri, 12/11/2020 - 14:00

Exploring stress, coping, and decision-making considerations of Alzheimer's family caregivers

More than 15 million Americans are providing care for a family member with Alzheimer's disease. Family caregivers are faced with highly stressful experiences, using strong coping skills, and implementing critical decisions with little or no knowledge or information and with virtually no preparation or assistance. The need for research efforts to focus on caregiver stress, coping mechanisms, and informed decision-making skills spearheaded a theoretical framework to study the potential relationships between family caregivers' types of stress, coping skills, and their decision-making efforts.

Mon, 11/30/2020 - 12:43

Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS)

Background: Patient, Carer and Public Involvement (PCPI) should be embedded in health care research. Delivering PCPI can be challenging, but even when PCPI is carried out it is rarely reported resulting in lost opportunities for learning. This paper aims to describe PCPI in the OSCARSS study, a pragmatic-cluster randomised controlled trial with an embedded economic and process evaluation. Methods: A carer research user group (RUG) co-developed OSCARSS to evaluate how to best deliver support to caregivers of stroke survivors.

Wed, 09/09/2020 - 15:02

Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol

Introduction: To advance person- and family-centred healthcare, government initiatives have supported the engagement of patients and family caregivers in decision-making in healthcare systems. There is, however, no consensus on how to define success for such initiatives. This scoping review aims to identify the key elements for defining the quality of patient and family caregiver engagement in decision-making across the engagement domains (individual, community/organisation, system) of British Columbia's healthcare system.

Mon, 02/03/2020 - 10:29

A qualitative systematic review of factors affecting caregivers' decision-making for care setting placements for individuals with dementia

Aims: To synthesize factors that facilitates or hinders the choice of a new living environment for a person with dementia by the informal caregiver.; Background: In an effort to develop evidenced-based interventions to support caregivers, it is essential to explore their experience.; Design: A qualitative systematic review using thematic synthesis. Studies published up to July 2019 were retrieved from four electronic databases.

Mon, 02/03/2020 - 10:01

Family caregivers and decision-making for older people with dementia

This article addresses the dilemmas concerning legislation, individual autonomy and the reality of everyday life for people coping with dementia. We describe and analyse decision-making in relation to older people with dementia in Sweden, within the area of social work regulated by the Social Services Act and the Parental Act. Swedish legislation is based on the individual’s autonomy and capacity to consent to services without anyone having legal authority to decide on behalf of the individual.

Wed, 10/09/2019 - 11:51

Dyadic Decision-Making in Advanced Parkinson's Disease: A Mixed Methods Study

People with advanced Parkinson's disease (PD) are living at home being cared for by a family member. Decisions about health care and living preferences are made in a family context. The aims of the study were to (a) examine the types and timing of the decisions being made by dyads (person with Parkinson's [PWP] and caregiver) in advanced PD; and (b) explore perceived decision quality relative to specific decisions made. A mixed methods design of semi-structured dyad interviews followed by individual completion of decision measures twice at six months apart was utilized.

Tue, 09/10/2019 - 11:46

Family caregiver descriptions of stopping chemotherapy and end-of-life transitions

Purpose: The purpose of this study was to describe family caregivers' perspectives of the final month of life of patients with advanced cancer, particularly whether and how chemotherapy was discontinued and the effect of clinical decision-making on family caregivers' perceptions of the patient's experience of care at the end of life (EOL). Methods: Qualitative descriptive design using semi-structured interviews collected from 92 family caregivers of patients with end-stage cancer enrolled in a randomized clinical trial.

Wed, 06/26/2019 - 13:15

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