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Community participation of families of children with profound intellectual and multiple disabilities in South Africa

Background: Families struggle to support family members with profound intellectual and multiple disabilities (PIMD), especially in low resourced settings where formal services may not be available. Method: The adapted Family Community Participation survey, measuring perceptions of community participation, was administered to 67 primary caregivers of children with PIMD in Cape Town by community-based rehabilitation workers. Results: Families were most satisfied going to religious activities and getting together with family and friends.

Wed, 08/10/2022 - 17:13

Communal responsibility: a history of health collectives in Australia

Healthcare encompasses multiple discourses to which health professionals, researchers, patients, carers and lay individuals contribute. Networks of patients and non-professionals often act collectively to build capacity, enhance access to resources, develop understanding and improve provision of care. This article explores the concept of health collectives and three notable examples that have had an enduring and profound impact in the Australian context. 

Wed, 10/09/2019 - 12:37

Family Matters: Counting Families In

This report seeks to highlight the perspectives of family carers within the development of a national strategy for people with learning disabilities. The report represents a synthesis of a broad range of views, collected through consultation workshops, correspondence, conversations with family carers, and a review of the relevant  literature. 

Mon, 09/10/2018 - 17:51

What is the role of community at the end of life for people dying in advanced age? A qualitative study with bereaved family carers

Background: New public health approaches to palliative care prioritise the role of community at end of life. However, little is known about community support for the increasing numbers of people dying in advanced age. Aim: To explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers. Design: A constructionist framework underpinned a qualitative research design.

Wed, 06/06/2018 - 12:18

Women's work is never done: Employment, family and activism - An introduction

This article frames the issues in the Supreme Court case, Nevada Department of Human Resources v. Hibbs, and introduces the articles making up the inaugural symposium of the Law and Women's Studies Program at the University of Cincinnati. Hibbs involved a husband who was trying to get leave under the Family and Medical Leave Act (FMLA) in order to take care of his severely injured wife. The case presents an opportunity to rethink issues of work and family, the legal subordination of women, and the law as an agent for social change, and it was therefore an ideal focus for the symposium.

Thu, 07/20/2017 - 15:17

Welcome to the family

A DVD in 10 languages to raise awareness of the need for short break carers from Black and minority ethnic communities. To inform potential carers about the rewards and challenges involved in providing short breaks to disabled children. To increase the take up of short break services by the families of disabled children of Black and minority ethnic communities. With English version narrated by Linford Christie.

Thu, 07/20/2017 - 15:16

A framework for understanding user requirements for an information service: defining the needs of informal carers

The aim of this research was to develop a conceptual framework that would help to collect and understand the information needs of a target community. Even though many information behavior frameworks already exist, they tend to focus on different aspects of the person and their interaction with information. It was proposed that a synthesis of the existing frameworks could lead to one comprehensive framework. Previous research was analyzed and an initial framework defined.

Thu, 07/20/2017 - 15:13

LEAP framework

The LEAP (learning, evaluation and planning) framework is a toolkit designed to support a partnership approach to achieving change and improvement in the quality of community life. It has been used by policy makers, practitioners, and community activists in the fields of health education; adult learning; volunteering; and environmental planning. The framework will be of interest to anyone interested in using a partnership approach to improving outcomes for communities, service users and carers.

Thu, 07/20/2017 - 15:11

Barriers and supports for exercise participation among adults with Down Syndrome

Examined were the impact of exercise barriers and carer attitudes regarding exercise outcomes on the exercise participation of adults with Down syndrome (DS). The sample included 44 adults age 30 years and older with DS and mild to moderate intellectual disability and their carers (family members or staff). Measures included personal characteristics of the adults with DS (age, level of adaptive behavior, and health status), carer perceived outcomes of exercise for people with DS, socio-emotional barriers, and access barriers to exercising.

Thu, 07/20/2017 - 15:10