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Supporting people with an intellectual disability and dementia: A constructivist grounded theory study exploring care providers’ views and experiences in the UK

Background There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi‐structured interviews with two family carers, eight paid carers and eight healthcare professionals.

Thu, 01/14/2021 - 10:04

Management of Sleep Disturbances in Parkinson's Disease Patients, Carers and the Patient and Carer Dyadic Relationship: A Scoping Review

Sleep disturbances are a debilitating non-motor symptom in Parkinson's disease (PD) and negatively impact patients, their carers and the patient-carer dyadic relationship. This review outlines the phenomenology, as well as factors associated with and treatment of sleep disturbances, in PD patients and their informal carers. The following terms were used in four databases: Parkinson*, sleep* disturbance*, carer*, dyad*, intervention* and treatment*. Across the articles reviewed, the frequency of reported sleep disturbances in PD ranged between 60% and 98%.

Fri, 12/11/2020 - 17:46

Inclusion of Carer Health-Related Quality of Life in National Institute for Health and Care Excellence Appraisals

Objectives: Health interventions for patients can have effects on their carers too. For consistency, decision makers may wish to specify whether carer outcomes should be included. One example is the National Institute for Health and Care Excellence (NICE), whose reference case specifies that economic evaluations should include direct health effects for patients and carers where relevant. We aimed to review the methods used in including carer health-related quality of life (HRQL) in NICE appraisals.

Fri, 12/11/2020 - 11:05

The evidence supporting educational videos for patients and caregivers receiving hospice and palliative care: A systematic review

Objective: The purpose of this study is to explore the evidence surrounding educational videos for patients and family caregivers in hospice and palliative care. We ask three research questions: 1. What is the evidence for video interventions? 2. What is the quality of the evidence behind video interventions? 3. What are the outcomes of video interventions? Methods: The study is a systematic review, following Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) guidelines.

Sun, 11/29/2020 - 12:12

Developing Service User Skills in Co-Production of Research: Course Development and Evaluation

Purpose : The purpose of this article is to enhance understanding of the increasing importance of service user and carer involvement in social work research. The paper outlines actions taken to develop knowledge and skills at post-qualifying level. Method : In 2016 three postgraduate modules on research methods and evidence-into-practice for service users and carers were created and taught jointly with existing parallel post-qualifying modules for experienced social workers.

Thu, 11/26/2020 - 12:04

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

The development of a web-based resource to provide information and psychosocial support to informal cancer carers in hospitals in Vietnam

Objective: Vietnam, like many low/middle income countries, lacks the infrastructure to provide information and psychosocial support to cancer patients and their carers. We undertook a codesign process to develop a web resource to inform and support carers. Methods: Cancer carers and health care professionals' perspectives regarding information and support needs and the content and delivery of web-based supports, were explored via five focus groups (n = 39) and semistructured interviews (n = 4) in Vietnam in 2018.

Tue, 08/04/2020 - 15:42

Does Telehealth Delivery of a Dyadic Dementia Care Program Provide a Noninferior Alternative to Face-To-Face Delivery of the Same Program? A Randomized, Controlled Trial

Objective: This study aimed to determine whether delivery of a dyadic intervention using telehealth was noninferior to delivery of the same program using traditional face-to-face delivery through home visits. Design: We conducted a noninferiority randomized controlled trial. Participants: Participants had a diagnosis of dementia, were living in the community, and had an informal caregiver who reported difficulties in managing activities of daily living or behavioral symptoms.

Thu, 07/30/2020 - 13:36

Outcomes and change processes of an established family education program for carers of adults diagnosed with a serious mental health condition

Background Family education programs (FEPs) target caregiving-related psychological distress for carers of relatives/friends diagnosed with serious mental health conditions. While FEPs are efficacious in reducing distress, the mechanisms are not fully known. Peer group support and greater mental health knowledge are proposed to reduce carers' psychological distress by reducing stigmatising attitudes and self-blame, and strengthening carers' relationship with their relative.

Mon, 07/27/2020 - 11:29

Social Participation and Health Outcomes Among Caregivers and Noncaregivers in Great Britain

This study investigates the relationship between social participation and health outcomes between caregivers and noncaregivers in Great Britain. Previous studies indicate that the impact of informal caregiving on the carer's health is complex, and the intensity of care provision has an adverse impact on the caregivers' health, while social participation could have a protective role in this respect.

Mon, 02/03/2020 - 11:16

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