Support staff liaising effectively with family caregivers: findings from a co-design event and recommendation for a staff training source.
File(s)
Published version
Author(s)
Deb, Saumitra
Limbu, Bharati
Type
Journal Article
Abstract
A high proportion of people with intellectual disabilities (ID) and autism spectrum disorder (ASD) are prescribed psychotropic medications such as antipsychotics, antidepressants etc., outside their licenced indications, primarily for the management of behaviours that challenge (BtC) in the absence of a psychiatric disorder. Examples of BtC are aggression to people and property or self-injury. BtC could be challenging to manage and may cause patient and caregivers distress, breakdown of community placement leading to hospitalisation, and restrictive practices such as restraint or inappropriate medication use. Caregivers play a pivotal role in the prescribing process. However, many family caregivers feel that they have not been fully involved in the shared decision-making process about the care planning of their relatives with ID/ASD. To address the public health concern regarding the overuse of off-licence prescribing in people with ID/ASD, we have recently developed a training programme called SPECTROM (Short-term Psycho-Education for Carers To Reduce OverMedication of people with intellectual disabilities) for direct care staff who support people with ID/ASD within community settings. We used co-production and a modified Experience-Based Co-Design method to develop SPECTROM, which involved a literature review, four focus groups and a co-design event day involving 26 stakeholders. Recommendations from the co-design event day were analysed by a Programme Development Group (PDG) consisting of 21 stakeholders who made the final recommendations to the project team regarding the contents and the format of SPECTROM, which was finalised after receiving feedback from further 56 stakeholders. SPECTROM has web-based resources introduced through two core modules in face-to-face workshops/training. A small field test found SPECTROM was effective in improving staff’s knowledge of psychotropic medications and attitude toward BtC and people with ID (p < 0.05). One of the 14 STOMP modules is ‘Effective liaison with family carers and advocates.’ In this paper, we have presented data from the co-design event day recommendations for this particular module. The group recommended ways to improve collaborative working and effective shared decision-making with family caregivers and people with ID/ASD.
Date Issued
2022-09-14
Date Acceptance
2022-08-16
Citation
Frontiers in Psychiatry, 2022, 13, pp.1-11
ISSN
1664-0640
Publisher
Frontiers Media
Start Page
1
End Page
11
Journal / Book Title
Frontiers in Psychiatry
Volume
13
Copyright Statement
© 2022 Deb and Limbu. This is an
open-access article distributed under
the terms of the Creative Commons
Attribution License (CC BY). The use,
distribution or reproduction in other
forums is permitted, provided the
original author(s) and the copyright
owner(s) are credited and that the
original publication in this journal is
cited, in accordance with accepted
academic practice. No use, distribution
or reproduction is permitted which
does not comply with these term
open-access article distributed under
the terms of the Creative Commons
Attribution License (CC BY). The use,
distribution or reproduction in other
forums is permitted, provided the
original author(s) and the copyright
owner(s) are credited and that the
original publication in this journal is
cited, in accordance with accepted
academic practice. No use, distribution
or reproduction is permitted which
does not comply with these term
License URL
Identifier
https://www.frontiersin.org/articles/10.3389/fpsyt.2022.977442/full
Subjects
behaviors that challenge
co-production
effective liaison with family caregivers
experience based co-design
interdisciplinary collaboration
people with intellectual disabilities
psycho-education programme
psychotropic medications
1103 Clinical Sciences
1117 Public Health and Health Services
1701 Psychology
Publication Status
Published
Date Publish Online
2022-09-14