Short-Term Psycho-Education for Caregivers to Reduce Overmedication of People with Intellectual Disabilities (SPECTROM): Development and Field Testing

Unwin

Weaver

2022

IJERPH

Self Cite

Behaviours that challenge (BtC), such as aggression and self-injury, are manifested by many people with intellectual disabilities (ID). National and international guidelines recommend non-pharmacological psychosocial intervention before considering medication to address BtC. Support staff play a pivotal role in the prescription process. Using coproduction, we developed a training programme for support staff, called SPECTROM, to give them knowledge and empower them to question inappropriate prescriptions and ask for the discontinuation of medication if appropriate and instead look for ways to help people with ID when they are distressed without relying on medication. We have presented data from two focus groups that we conducted during the development of SPECTROM: one that included support staff, and another that had service managers and trainers. In these focus groups, we explored participants’ views on the use of medication to address BtC with a particular emphasis on the causes of and alternatives to medication for BtC. Along with the participants’ views, we have also presented how we have addressed these issues in the SPECTROM resources.

Section: Introductionmentioning

confidence: 99%

Causes of and Alternatives to Medication for Behaviours That Challenge in People with Intellectual Disabilities: Direct Care Providers’ Perspectives

Unwin

Weaver

2022

IJERPH

Self Cite

“…SPECTROM used focus groups, meetings and workshops, teleconferences, synthesis of existing evidence and a one-day workshop to capture the experiences of participants and suggestions for its contents and the format. The SPECTROM programme was successfully developed after many revisions ( https://spectrom.wixsite.com/project ) ( 39 ).…”

Section: Discussionmentioning

confidence: 99%

“…There are 12 additional modules. One of these 12 modules is “Effective liaison with families and advocates ( 39 )”. This module was developed to help support staff communicate appropriately with family caregivers and encourage shared decision-making.…”

Section: Introductionmentioning

confidence: 99%

Support staff liaising effectively with family caregivers: Findings from a co-design event and recommendation for a staff training resource

Deb

2022

Front. Psychiatry

Self Cite

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 licensed indications, primarily for the management of behaviors 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 the person with ID/ASD and their caregivers distress, breakdown of community placement leading to hospitalization, 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-license prescribing in people with ID/ASD, we have recently developed a training programme called SPECTROM (https://spectrom.wixsite.com/project) (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 (EBCD) 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 analyzed 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 finalized after receiving feedback from further 59 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.

“…Eventually, a draft training programme was developed based on the recommendations. The SPECTROM intervention was successfully developed after many revisions and can be found on the SPECTROM website (https://spectrom.wixsite.com/project) (18). Also, a field testing of SPECTROM on 20 trainees was successful and found significant results.…”

Section: Adaptation Of Experience Based Co-designmentioning

confidence: 99%

“…so that all these views can be taken forward to reduce the overmedication of psychotropic medication for BtC. The authors recently developed a training programme called SPECTROM (Short-term Psycho-Education for Carers To Reduce Over Medication of people with intellectual disabilities) for support staff to help reduce the overmedication of people with ID (18). Support staff plays a pivotal role in the prescribing process (19,20).…”

Section: Introductionmentioning

confidence: 99%

Support staff liaising effectively with professionals for the rational use of psychotropics for behaviours that challenge in adults with intellectual disabilities: Findings from a co-design event

Deb²

2022

Front. Psychiatry

Self Cite

Experience Based Co-Design (EBCD) and co-production are interdisciplinary collaborative approaches to improve health care services by involving all stakeholders. These approaches capture the experiences of all stakeholders who come in contact with services and use experiences as evidence to promote and implement service changes. The use of psychotropic medications for behaviours that challenge (BtC) in people with intellectual disabilities (ID) is a complex issue because of its off-licence use and use in combination with other medications for physical and psychiatric co-morbidities, which leads to overmedication of people with ID. As support staff plays a pivotal role in the prescribing for people with ID, we have developed a staff training programme, SPECTROM, to help reduce overmedication. A project team developed SPECTROM under the guidance of a Programme Development Group (PDG) consisting of 21 stakeholders. The PDG analysed data from a literature review, four focus groups and a co-design event day involving 26 stakeholders. In this paper, we have presented data based on the findings from the co-design event day, primarily on the issue of support staff effectively liaising with professionals such as doctors, nurses, and other community learning disability team members. In-depth information and recommendations were proposed at the co-design event, which helped develop the draft SPECTROM. The draft was finalised after receiving feedback from 56 stakeholders. Co-production and a modified EBCD can be successfully used to create training interventions and improve health care services. More research should utilise co-production and EBCD and use service users’ experiences to develop interventions and improve health care services.