Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary.
Method: We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations.
J Appl Res Intellect Disabil
September 2023
Background: Caring for persons with profound intellectual and multiple disabilities (PIMD) demands specific expertise. Tacit knowledge seems to play an important role, but little is known about its nature, including what is necessary for its development and transfer.
Aim: To gain understanding of the nature and development of tacit knowledge between persons with PIMD and their caregivers.
Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. While this is expected to negatively affect them, little is known about the actual situation of persons with PIMD without parents.
Aim: To explore how parental roles are taken over by others, when persons with PIMD have outlived their parents, and how this affects the care and support for- and quality of life (QoL) of persons with PIMD.
In health promotion research, enthusiasm for patient and public involvement (PPI) is growing. However, a lack of conceptual clarity leads to ambiguities in participatory processes and purposes, and hampers efforts to achieve and evaluate PPI in research. This study provides an overview of its underlying reasons-or rationales-so as to better understand, guide and interpret PPI in research practice.
View Article and Find Full Text PDFPatient participation is a highly valued principle. Yet, it remains difficult both to achieve it and to assess its added value, as participation is often started without much clarification of what it means or aims to do. In theory, patients may be invited to participate for reasons of democracy, empowerment, knowledge integration and instrumentalism.
View Article and Find Full Text PDFBackground: The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However, little is known about how parents make such decisions for their ageing child.
Aim: Explore parents' views on medical decisions related to life and death for their ageing child with PIMD.
J Appl Res Intellect Disabil
November 2020
Background: Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge.
Method: We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies.
Int J Qual Stud Health Well-being
December 2018
Purpose: People with mild intellectual disabilities (MID) generally live independently among the wider community. This can result in social exclusion and feelings of loneliness. Therefore, social work organizations aim to socially include people with MID through organizing activities in neighbourhoods that should lead to enlarged networks and increased societal participation.
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