‘It’s my home and your work’: the views of a filmed vignette describing a challenging everyday situation from the perspective of people with intellectual disabilities

Abstract

Purpose: Examining everyday challenges in the interactions between people with intellectual disabilities and their staff, as seen from the user’s perspective, is an important perspective in health care research. Involving people with intellectual disabilities as so-called co-researchers is a relatively unexplored research strategy. In this paper, co-researchers participated in all the steps of the research process, from planning to reporting, in addition to the written reporting of the findings. The aim of this study was to explore how people with intellectual disabilities experienced a filmed vignette of an everyday situation. Method: Based on audio-recorded and transcribed individual and focus-group interviews with people with intellectual disabilities, performed by co-researchers with intellectual disabilities together with researchers, qualitative content analysis was used. Results: The analysis reveals three themes: “being emotionally touched”, “being aware of the other”, and “being unclear”. Conclusions: The results are discussed in light of normalization and participation in society with independence and one’s own decision-making. Regarding the care of people with intellectual disabilities, the main finding is the need to focus not only on greater involvement of this population in their own daily lives, but also to teach self-determination skills. Another finding is the importance of involving people with intellectual impairment as co-researchers.

“Always trying to walk a bit of a tightrope”: The role of social care staff in supporting adults with intellectual and developmental disabilities to develop and maintain loving relationships

“…In many contexts, support staff in group homes and supported living accommodation struggle to balance control and guidance with service users' autonomy (Hellzen, Haugenes, & Østby, 2018) and this is evident when it comes to relationships and sex. Staff need to be careful not to abuse the influence and power they inevitably have over service users, as people with intellectual and developmental disabilities are often not well placed to exert their rights and stand their ground.…”

An observation study of power practices and participation in group homes for people with intellectual disability

“…The right for participation for people with intellectual disability is emphasised in policy documents worldwide (Hammel et al 2008), and in Sweden through the LSS (SFS 1993:387), through the national action plan on disability policy 'from patient to citizen' (Government Bill 1999 and through the national goal and direction of disability policies (Government Bill 2016/17:188). These policies stipulate rights to community, equality and moral citizenship, and they seek to prevent discrimination and facilitate participation for all individuals at all levels in society.…”

“…Support in group homes are often based on the staff's experiences and perceptions of what the residents need, which can negate and neglect residents' voices in daily life decisions and limit their participation (Altermark 2017;L€ ofgren-Mårtensson 2013). Although group home staff aim to facilitate residents' autonomy and participation, they may unintentionally exert their stronger power position to provide support and activities governed by social norms (Hellzen, Haugenes, and € Ostby 2018). In Sweden, group homes are founded on legislations that asserts individuals' right to self-determination (SFS 1993:387 6 §); but, in practice, group home staff play a determining role in residents' lives (Beadle-Brown et al 2014;L€ ofgren-Mårtensson 2013).…”

Individualized Apartment Accommodation for People With Intellectual Disability: Protocol for a Qualitative Study Examining the Well-Being and Support Outcomes Linking Housing and Health

“…Some of the expected improvements in the outcomes and lives of people with intellectual disability in the years of post-deinstitutionalization have not been realized, most notably the fact that community participation has not increased despite group homes being community based [ 8 - 10 ]. In addition to this, the power dynamics that the home and work duality of the group home environment brings (being both a home for a person with disability and a workplace for support staff) can result in less-than-homely environments and workplace cultures determining the household routines and activities [ 7 , 11 , 12 ]. The lack of homeliness of some group homes has also been highlighted by Robertson et al [ 13 ].…”