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Awareness of genetic testing for children with autism spectrum disorder among caregivers in an autism support group

Recent discoveries have improved our understanding of the complex genetic mechanisms underlying autism spectrum disorder (ASD). Despite current guidelines, genetic testing for children with ASD is largely underutilized. This has been attributed to a lack of public awareness regarding genetic testing. The role that autism support groups play in this awareness has not been previously described. A web-based survey was developed and distributed through a community support group to assess the awareness and utilization of genetic testing among caregivers for children with ASD.

Tue, 12/13/2022 - 11:17

Remote activity monitoring for family caregivers of persons living with dementia: a mixed methods, randomized controlled evaluation

Background: The goal of the present study was to determine whether a remote activity monitoring (RAM) system benefited caregivers who aided relatives with Alzheimer’s disease or related dementias (ADRD) living at home.

Thu, 09/01/2022 - 15:40

Impact of the COVID-19 pandemic on family carers in the community: A scoping review

Background: The COVID-19 pandemic has led to the closure or reduction in support services for family carers, resulting in increased social isolation and stress for this population. Objectives: The current scoping review aimed to identify the impact of COVID-19 upon carers and support provided for them during the pandemic.

Tue, 08/23/2022 - 22:58

A qualitative exploration of how gender and relationship shape family caregivers’ experiences across the Alzheimer’s disease trajectory

Background: Caregiving experiences are not static. They change across the disease trajectory and care continuum. However, it is not clear how caregiver gender or relationship type is related to evolving caregiver experiences over time. Objectives: This qualitative study informed by constructivist grounded theory and framework analysis explored the experiences over time of men and women who were adult children and spousal caregivers to persons with Alzheimer’s disease.

Wed, 08/17/2022 - 18:21

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

Family perspectives on the acceptability and usefulness of the FAB Positive Behaviour Support program: A pilot study

Purpose: This pilot feasibility study aimed to gain preliminary insight into the acceptability and usefulness of the FAB-PBS program for providing behavior support to families following acquired brain injury (ABI) in community settings. Background: The FAB-PBS program is based on a Positive Behavior Support (PBS) framework and principles of Family-Centered Care and Family-Directed Intervention. It consists of an education phase followed by individualized sessions during which the family is supported to develop and implement a PBS plan.

Mon, 05/30/2022 - 15:48

Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

Objectives This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar. Design This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.

Mon, 04/05/2021 - 18:30

Race Differences in Characteristics and Experiences of Black and White Caregivers of Older Americans

Background and Objectives Racial disparities in health and socioeconomic characteristics of older adults have implications for the experiences of their family and unpaid caregivers, but knowledge to date has primarily drawn from convenience samples. Using a population-based sample, we examine associations between caregiver race and caregiving-related effects.

Mon, 12/14/2020 - 10:42

Experiences of Living in the Community for Older Aboriginal Persons With Dementia Symptoms in Taiwan

Background and Objectives Improving quality of life for community-dwelling older persons with dementia symptoms (PWDS) and family caregivers requires promoting dementia-friendly communities (DFC). However, little is known regarding older Taiwanese Aboriginal PWDS' experiences of living in the community. We explored these experiences for older Atayal PWDS and their families in Taiwan.

Mon, 07/13/2020 - 15:57

48 Accessing Respite Services for People with Dementia and Their Carers: A Qualitative Study with Multiple Stakeholders

Background People with dementia and carers do not always access respite services in a timely manner, and in some cases, they do not access respite services at all. While carers' perspectives on respite access have been explored, other stakeholder perspectives, especially those of people with dementia, are under-represented in the existing literature. The aim of this study was to synthesise multiple stakeholders' perspectives, including people with dementia, on accessing respite services. Methods Purposive sampling was employed.

Wed, 12/18/2019 - 14:53

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