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Integrated health and social care in the community: A critical integrative review of the experiences and well‐being needs of service users and their families

Background: A need for people‐centred health and social support systems is acknowledged as a global priority. Most nations face challenges in providing safe, effective, timely, affordable, coordinated care around the needs and preferences of people who access integrated health and social care (IHSC) services. Much of the current research in the field focuses on describing and evaluating specific models for delivering IHSC. Fewer studies focus on person‐centred experiences, needs and preferences of people who use these services.

Mon, 06/06/2022 - 18:35

Integrated health and social care in the community: A critical integrative review of the experiences and well‐being needs of service users and their families

Background: A need for people‐centred health and social support systems is acknowledged as a global priority. Most nations face challenges in providing safe, effective, timely, affordable, coordinated care around the needs and preferences of people who access integrated health and social care (IHSC) services. Much of the current research in the field focuses on describing and evaluating specific models for delivering IHSC. Fewer studies focus on person‐centred experiences, needs and preferences of people who use these services.

Mon, 06/06/2022 - 17:18

Innovative methods for involving people with dementia and carers in the policymaking process

Background: There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care.

Mon, 06/06/2022 - 17:04

Informal carers' support needs when caring for a person with dementia – A scoping literature review

Background: Informal carers of people with dementia report having unmet needs for support and few supportive interventions have been shown to be effective. There is a need to develop needs assessment instruments and supportive interventions with a holistic and person‐centred approach to meet the various and complex needs of carers. Objectives: The aim of this study was to provide an overview of carers' support needs when caring for people with dementia with the objectives to map and synthesise knowledge on key concepts of carers' support needs.

Mon, 06/06/2022 - 15:19

Informal carer's knowledge of traumatic brain injury questionnaire: Initial development and validation

Aim: To develop and psychometrically test the instrument for measuring the knowledge of traumatic brain injury of informal carers. Design Instrument development. Method: Focus group discussions were conducted among informal carers and healthcare specialists in March 2017. The content validity was determined by the mean of the item content validity index.

Mon, 06/06/2022 - 15:12

Improving the depth of data quality or increasing confusion? Reflections on a data analysis involving members of a self‐help group for relatives of people living with dementia

Background: Public involvement in research to improve data quality and to empower different stakeholders is good scientific practice, but rarely implemented across all research phases. Objective: This article reports on an attempt to involve members of a self‐help group for relatives of people living with dementia as co‐researchers in the data analysis in a short‐term format. Methods: One researcher identified statements about assistive technologies from 17 interviews with people living with dementia and informal caregivers.

Sun, 06/05/2022 - 19:53

Impacts of COVID‐19 on caregivers of childhood cancer survivors

Purpose: We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID‐19) on caregivers of childhood cancer survivors. Methods: A 13‐question survey containing multiple‐choice, Likert‐type, and free‐text questions on experiences, behaviors, and attitudes during the COVID‐19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID‐related experiences, and caregiver well‐being.

Sun, 06/05/2022 - 18:32

The impact of ovarian cancer on individuals and their caregivers: A qualitative analysis

Objective: Ovarian cancer remains an understudied cancer with poor prognosis, few effective treatments and little understanding of the how individuals and their families face the challenges and uncertainty following diagnosis. This study synthesized the subjective experiences of individuals and their caregivers in the face of the uncertainty produced by the disease. Methods: Qualitative data were obtained from the Ovarian Cancer Australia 2017 Consumer Survey.

Sun, 06/05/2022 - 16:19

The Impact of Dementia Daycare Service Cessation Due To COVID-19 Pandemic

Objectives: This study aimed at revealing the caregiving challenges of the caregivers of people with dementia (PwD) during the COVID-19 pandemic when daycare service was stopped as an infection control measure, and discussed ways to help PwD and their family caregivers to maintain their well-being in the era of the pandemic. Methods: Between April and May 2020, a cross-sectional survey was conducted in 152 family caregivers of PwD who were clients of daycare service prior to the pandemic.

Sun, 06/05/2022 - 15:44

"I was always struggling": Caregivers' experiences of transitioning a child from oral to long‐term non‐oral feeding at an out‐patient hospital clinic in South Africa

Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital.

Fri, 06/03/2022 - 18:06

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