From silenced to central: A qualitative study re-positioning family carers as epistemic agents through the carer-inclusive restrictive practice reduction pathway (CIRP)

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Craig, E., Haines-Delmont, A., Whyte, R., Morrison, B., Quinn, A., & Duxbury, J. (2026). From silenced to central: A qualitative study re-positioning family carers as epistemic agents through the carer-inclusive restrictive practice reduction pathway (CIRP). Journal of Intellectual Disabilities, 17446295261478670-17446295261478670. https://doi.org/10.1177/17446295261478670

Publication date: 18 Aug 2026 Added to AutiHub: 23 Aug 2026 Type: Article Article language: English
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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Elaine Craig
  2. Alina Haines-Delmont
  3. Rachel Whyte
  1. Beth Morrison
  2. Alexis Quinn *
  3. Joy Duxbury

Abstract

This paper examines the experiences of family carers supporting their children and siblings with intellectual disabilities, autism, and co-occurring mental health conditions in, inpatient services. Carers’ relational knowledge of communication, sensory needs, and trauma histories is often excluded from care, reinforcing systemic power imbalances and legitimising coercive practices such as restraint and seclusion. Using four online community focus groups with twenty-seven carers, facilitated by lived experience co-researchers, thematic analysis revealed carers’ dual roles as relatives and advocates navigating institutional exclusion. Participants described how distress was misinterpreted and labelled as ‘ challenging behaviour ’, reinforcing institutional responses that perpetuated harm and cumulative relational trauma for both individuals and their families. Carers called for partnership, trauma-responsive cultures, and policy reform. In response, we propose the Carer-Inclusive Restrictive Practice Reduction (CIRP) Framework: a rights-based model embedding carer authority through recognition, reparation, reconnection, and reform to address epistemic injustice and advance collaborative, ethical mental health care.

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Cited references
64
With a DOI
33
Without a DOI, from raw bibliography text
31
0 / 64 (0.0%) cited references include at least one author identified as autistic.
References with data to complete
13 / 64 (20.3%)
References with detected author names
52 / 64 (81.2%)
Without detected author names
12
Without a structured title
13
Without a stable identifier
31
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
181
From DOI or external metadata
181
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
12
36 / 181 (19.9%) names are linked to an author already present in AutiHub. 145 / 181 (80.1%) names are not yet linked.
Names linked to a person identified as autistic
0 / 181 (0.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 0 / 36 (0.0%). Distinct people identified as autistic: 0 / 171 (0.0%).
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