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Research

Setting up an advisory group to explore the role of partners of adolescents and young adults in cancer care

Minimal research has been undertaken into needs of partners of adolescents and young adults with cancer. However, it is understood to be important for adolescents and young adults with cancer to maintain a connection with healthy peers and that they regard their loved ones, including partners, as valuable to them during their cancer treatment. Research has also suggested that adolescents and young adults consider that loved ones and partners also need support and that this support is lacking in cancer services.

Tue, 06/21/2022 - 19:33

Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study

Context: Hospice is a service for those with a life expectancy of six months or less. Family caregivers suffer from depression and anxiety as they care for their loved one until they die. Little is known about how research participants decide to consent to participate in clinical trials in the hospice setting. Objectives: This pilot study sought to answer two research questions: 1) In what way do demographic characteristics, mental health, and perceived caregiving experience impact the decision by caregivers to participate in hospice clinical trials?

Sat, 06/11/2022 - 10:29

Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England

Background: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them.

Tue, 06/07/2022 - 16:03

Key Activities of Caregivers for Individuals With Parkinson Disease: A Secondary Analysis

BACKGROUND: Individuals with Parkinson disease (PD) require support from family caregivers because of decreased functional levels in a later stage. Much of the research with PD caregivers has been limited by relatively homogenous samples of primarily White and largely spousal caregivers. METHODS: This secondary analysis aimed to describe a national sample of caregivers of individuals with PD in the Caregiving in the U.S. 2015 data set and their activities, including activities of daily living (ADLs), instrumental ADLs (IADLs), and key activities they performed for individuals with PD.

Mon, 04/05/2021 - 16:29

A technology-enhanced model of care for transitional palliative care versus attention control for adult family caregivers in rural or medically underserved areas: study protocol for a randomized controlled trial

Background: Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care.

Fri, 01/15/2021 - 11:57

An Exploratory Study of the Research on Caregiver Depression: Using Bibliometrics and LDA Topic Modeling

Purpose: The purpose of this paper is to provide readers with a comprehensive overview of scholarly work on the depression of caregivers using bibliometrics and text mining. Methods: A total of 426 articles published between 2000 and 2018 were retrieved from the Clarivate Analytics Web of Science, and then, computer-aided bibliometric analysis as well as Latent Dirichlet Allocation (LDA) topic modeling were conducted on the collection of the data.

Mon, 11/30/2020 - 12:35

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

Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR): Part 1

The term user involvement is frequently applied in research. Frameworks for patient and informal caregiver participation as coresearchers in studies concerning patients with life-threatening illness are however sparse. The PhD project Dying With Dignity-Dignity-Preserving Care for Older Women Living at Home With Incurable Cancer has implemented a thorough cooperation with patients and informal caregivers from the early stages of the research process.

Fri, 01/24/2020 - 10:07

The legal, governance and ethical implications of involving service users and carers in research

Purpose Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions.

Mon, 10/14/2019 - 12:24

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base.

Mon, 10/07/2019 - 10:49

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