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

Abstract

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. They were most dissatisfied with doing activities together in public and working or volunteering outside the home. Barriers to participation included negative attitudes, insufficient money and unavailability of community activities. Transportation, safety and security were additional challenges. Conclusions Participants advocate awareness raising, community support and provision of services to address barriers to community participation. Families should be consulted on community issues to integrate their specific family needs into the overall needs of the community.

Barriers to volunteering in the field of intellectual disability: a cluster analysis

“…Several studies show that individuals are subject to various barriers to volunteering (McKenzie et al, 2021 ; Southby et al, 2019 ; Sundeen et al, 2007 ), and we can identify internal and external barriers (Brandão & Bruno-Faria, 2017 ; M’Sallem, 2022 ; Southby et al, 2019 ; Sundeen et al, 2007 ), as we can see in Table 2 . Internal barriers can be shaped by the internal environment, and personal characteristics can influence the predisposition to volunteer (Friedman et al, 2015 ; Oliveira & Pinheiro, 2021 ; Shinbrot et al, 2021 ; Southby et al, 2019 ); in turn, external barriers can be related to the market, government and other external networks (Breeze, 2014 ; Hansen & Slagsvold, 2020 ; Oliveira & Pinheiro, 2021 ; Schwingel et al, 2017 ; Whittaker et al, 2015 ) (Appendix Table 2 ).…”

“…Negative attitudes by others influence society's responses and intellectual disability tends to be associated with prejudiced attitudes (Walker & Scior, 2013 ). Intellectually disabled people are one of the groups most marginalised by society (Louw et al, 2020 ), as they are often excluded from participating in social activities and have limited opportunities when it comes to developing friendships (Louw et al, 2020 ; McKenzie et al, 2021 ; Walker & Scior, 2013 ). Thus, finding effective ways to combat negative attitudes and discriminatory behaviours is a key priority for researchers in the field of intellectual disability (Walker & Scior, 2013 ).…”

“…Studies in the area of childhood show that the type of disability influences how individuals behave; thus, people with disabilities related to active participation, problem solving and emotional self-regulation are less accepted by society (McKenzie et al, 2021 ; Woodgate et al, 2020 ). On the other hand, these same authors find that the continuous presence of a support person limits the interaction with the disabled person, which is further compounded by their personal limitations in communication.…”

“…Besides the motivation to donate time to the social economy, there are several barriers to volunteering (McKenzie et al, 2021 ; Southby et al, 2019 ; Sundeen et al, 2007 ). Although several studies mention that volunteering can bring benefits to the various stakeholders — volunteers, the organisation and its public, as well as the community itself (Ganesh & Mcallum, 2012 ; Handy & Srinivasan, 2004 ; Wit et al, 2022 ) —, not all individuals are equally predisposed to volunteering (Macduff et al, 2009 ; Netting et al, 2005 ).…”

Impact on physical, social, and family functioning of patients with metachromatic leukodystrophy and their family members in Japan: A qualitative study

“…In this regard, the mother spoke of the difficulty of traveling with the patient and of the mother's employment. Parents of children with severe disabilities complain about the difficulty of finding work and are frustrated [ 33 ]. Family outings and friendships may also be affected, and healthcare providers should focus on the QOL of both the family and the patient.…”