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Patient participation

Involvement of Jordanian Patients and Their Families in Decision Making Near End of Life, Challenges and Recommendations

Objectives: This study aims to explore the challenges in involving patients and their families in decision making near end of life and to provide recommendations to overcome these challenges. Methods: A qualitative descriptive phenomenological approach was used with a purposive sample of 8 patients, 7 family caregivers, 7 nurses, and 6 physicians from 2 institutions that provide palliative and end-of-life care services in Jordan. Data were collected using interviews with patients and family caregivers and focus group discussions with nurses and physicians.

Sat, 09/03/2022 - 11:51

Living well with kidney disease by patient and care‐partner empowerment: Kidney health for everyone everywhere

An editorial is presented to the article Chronic kidney disease, associated symptoms, and treatment, including medications, dietary and fluid restrictions, and kidney replacement therapy, has disrupt and constrain daily living and impair the quality of life of patients. Topics include the development of validated patient reported outcome measures and used to assess of life participation; and monitoring of life participation has supported by regulatory agencies as a metric for quality care.

Tue, 06/07/2022 - 19:52

Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

Background: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model.

Tue, 11/30/2021 - 19:01

Caregivers' role in using a personal electronic health record: a qualitative study of cancer patients and caregivers in Germany

Background: Particularly in the context of severe diseases like cancer, many patients wish to include caregivers in the planning of treatment and care. Many caregivers like to be involved but feel insufficiently enabled. This study aimed at providing insight into patients' and caregivers' perspectives on caregivers' roles in managing the patient portal of an electronic personal health record (PHR).

Mon, 11/23/2020 - 13:00

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings

Background: US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient-centered evidence better aligned with real-world clinical needs.

Tue, 07/28/2020 - 12:01

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

Shared decision-making in dementia care planning: barriers and facilitators in two European countries

Background: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands.

Wed, 10/31/2018 - 14:17

A qualitative study of older adults’ and family caregivers’ perspectives regarding their preoperative care transitions

Aims and objectives: To explore how older patients with multiple chronic conditions and their family caregivers perceive their engagement and overall care experience throughout the preoperative phase of elective orthopaedic hip or knee joint replacement. Background: Patient engagement is a critical component of care necessary for improving patient outcomes.

Fri, 10/26/2018 - 16:54

The good doctor: the carer's perspective

Carers are family members, friends, and neighbours who perform medical tasks and personal care, manage housekeeping and financial affairs, and provide emotional support to people who are ill, disabled, or elderly. From a carer's perspective, the primary requisite for a good doctor is competence. Assuming equal technical skills and knowledge, the difference between ‘good’ and ‘bad’ doctors comes down to attitudes and behaviour-communication. An important aspect of communication is what doctors say to carers, and how they interpret what carers say to them.

Thu, 07/20/2017 - 15:17

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