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Journal article

Use of the ADAPTE method to develop a clinical guideline for the improvement of psychoses and schizophrenia care: Example of involvement and participation of patients and family caregivers

Introduction: The aim of this study is to analyse different ways of participation during the development of a clinical guideline to improve the early detection of psychosis and to deploy a comprehensive treatment plan to improve prognosis and social integration. Materials and method: The clinical guideline was developed using the ADAPTE method with the participation of 40 authors and 80 external reviewers. The process was divided into three major phases: set up, adaptation and finalization.

Fri, 07/22/2022 - 16:02

Unmet family caregiver training needs associated with acute care utilization during home health care

Background/Objectives: Medicare-certified home health agencies are required to offer family caregiver training, but little is known regarding the potential impact of this training on outcomes during home health care. We estimate the proportion of family caregivers assisting Medicare home health patients who have unmet training needs and examine whether these unmet training needs are associated with older adults' risk of acute care utilization during home health care. Design: Observational, nationally representative cohort study.

Fri, 07/22/2022 - 15:11

Undertaking responsibility and a new role as a relative: a qualitative focus group interview study

Background: Being a relative of a patient with oesophageal cancer can evoke strong emotions and uncertainty about the future. As a consequence of the treatment course for oesophageal cancer and an increase in outpatient treatment, relatives are becoming increasingly responsible for patients' physical and emotional care. There is a lack of research exploring relatives' experiences with illness, treatment and decision‐making.

Fri, 07/22/2022 - 14:59

What is the present role for general practitioners in dementia care? Experiences of general practitioners, patients and family carers in Portugal

Background: Governments are being challenged to integrate at least part of dementia care into primary care. However, little is known about the current role of general practitioners (GPs) regarding dementia care, especially in countries that do not have dementia strategies in place. Objective: The aim of this study was to explore the experiences of GPs, persons with dementia and their family carers in Portuguese primary care settings, to better understand GPs' contribution to dementia care.

Fri, 07/22/2022 - 11:49

Willingness of family caregivers of people with dementia to undertake Advance Care Planning: Examining an extended model of the Theory of Planned Behavior

Background and objectives: Family caregivers of people with dementia experience high burden making medical decisions for their loved ones. Undertaking Advance Care Planning (ACP) can help reduce burden and stress. Having experiences making medical decisions for someone else may influence the way people make decisions for themselves. Therefore the aim of this study was to assess the willingness of family caregivers of people with dementia to undertake ACP for themselves, using the Theory of Planned Behavior.

Fri, 07/22/2022 - 11:41

Willingness and preparedness to provide care: interviews with individuals of different ages and with different caregiving experiences

Background: At present, the provision of informal care to older relatives is an essential pillar of the long-term care system in Germany. However, the impact of demographic and social changes on informal caregiving remains unclear. Methods: Thirty-three semi-structured interviews were conducted with care consultants, informal caregivers and people without any caregiving experience to explore if people are willing to provide older adult care and how prepared these are with regard to the possibility of becoming care dependent themselves.

Fri, 07/22/2022 - 11:37

Understanding the support needs of family members of people undergoing chemotherapy: A longitudinal qualitative study

Objectives: Capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support. Methods: Longitudinal digitally-recorded qualitative semi-structured interviews with family carers at the beginning, mid-point, and end of treatment. Twenty-five family members (17 women, 8 men), mean age 53, were interviewed. Fifteen participants were supporting a relative having chemotherapy with curative intent, and 10 a patient receiving palliative chemotherapy.

Fri, 07/22/2022 - 10:50

Understanding the client and family experience of neuropsychological evaluation

Background: Neuropsychological evaluation serves a number of health-related purposes, but little is known about how the evaluation process is experienced by clients and their family members. In this article, we describe a quality improvement initiative that utilized a mixed-methods approach to explore personal goal attainment and satisfaction by clients and family members engaging in the evaluation process.

Fri, 07/22/2022 - 10:20

VidaTalk™ patient communication application "opened up" communication between nonvocal ICU patients and their family

Background: To explore family members' perceptions of an electronic communication application, VidaTalk™, their communication experience, and emotional reactions to communication with mechanically ventilated patients in the intensive care units. Methods: Qualitative phase of a mixed-methods study nested within a randomised controlled trial. Family members in the intervention group received the VidaTalk™ app as a communication aid during their intensive care stay.

Thu, 07/21/2022 - 20:46

Utilization of telemedicine to support caregivers of young children with ASD and their Part C service providers: a comparison of intervention outcomes across three models of service delivery

Background: Families of young children with autism spectrum disorder (ASD) frequently experience barriers to accessing evidence-based early intervention services. Telemedicine presents an opportunity to increase access to these services, particularly for families in rural and under-resourced areas. The present article describes a brief behavioral intervention and support model for families of young children with concerns for ASD.

Thu, 07/21/2022 - 20:39

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