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“I love my sister, but sometimes I don't”: a qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities
- Authors:
- LUIJKX Jorien, PUTTEN Annette A.J. van der, VLASKAMP Carla
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(4), 2016, pp.279-288.
- Publisher:
- Taylor and Francis
Background: Many previous family quality of life studies have relied on parental information for understanding if and how having a sibling with profound intellectual and multiple disabilities (PIMD) influences the sibling’s quality of life. In the current study, children had the opportunity to describe both positive and negative aspects of having a sibling with PIMD. Method: Photo elicitation interviews were conducted with 18 children (6–13 years old) and thematically analysed using the following domains: joint activities, mutual understanding, private time, acceptance, forbearance, trust in wellbeing, exchanging experiences, social support, and dealing with the outside world. Results: Overall, the children described both positive and negative experiences, indicating that having a sibling with PIMD influenced their quality of life in multiple ways. Most mentioned were experiences classified in the joint activities domain. Conclusion: Having a sibling with PIMD influences the life of the interviewed children both positively and negatively. Both the opportunity for shared activities with the sibling with PIMD and moments of private time are important for sibling quality of life. (Publisher abstract)
Safety first! The topic of safety in reversed integration of people with intellectual disabilities
- Authors:
- VENEMA Eleonora, VLASKAMP Carla, OTTEN Sabine
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 14(2), 2017, pp.146-153.
- Publisher:
- Wiley
Background: Physical integration is believed to be a precondition for social integration. One might expect that in so-called reversed integration, where people without intellectual disabilities (ID) actively choose to live next to people with ID, conditions for physical integration are more optimal, and social integration is enhanced. If this hypothesized benefit of reversed integration settings indeed holds, however, is yet unknown. Specific aims: The aim of the present study is to examine barriers for social integration of people with intellectual disabilities (ID). In this context, the present article focuses on the role of safety and safety concerns. Method: A semi structured interview was conducted with 28 direct support professionals (DSPs), 25 family members, and 25 neighbours, aimed at their attitude toward social integration in a reversed integration neighbourhood. Several topics were dealt with, like the neighbourhood and contact between people with ID and neighbours. There were no explicit questions about safety in the interview. Findings: The topic of safety was spontaneously mentioned 90 times by 26 DSPs, 15 times by 9 neighbours, and 36 times by 18 family members. Three main themes were found in the total group of statements touching upon the issue of safety: environmental aspects, client characteristics, and working conditions. The most often mentioned sub-themes were the openness of the neighbourhood and the traffic. Discussion: In reversed integration, safety is still a highly relevant topic and of great concern for the DSPs and the family members. DSPs are more concerned with controlling risks and keeping everybody safe than looking at the opportunities the new environment offers, like enhancing social integration. (Edited publisher abstract)