Development, Implementation, and Evaluation of an Advance Care Planning Program for Professionals in Palliative Care of People With Intellectual Disability.
A co-designed ACP training package boosts Dutch ID-care staff confidence in communication and routine use of advance care planning.
01Research in Context
What this study did
A Dutch team built a training pack for staff who support adults with intellectual disability. The pack teaches advance care planning—talking early about future medical wishes.
Staff got an info kit, a short course, and a coach visit. Six services tried it. Before and after, the researchers asked staff how ready they felt to lead these talks.
What they found
After the package, staff said they felt more skilled and confident. They also said they would use advance care planning more often in daily work.
The study found positive results. No control group was used, so the gain is based on staff self-ratings.
How this fits with other research
Probst et al. (2008) did something similar for teachers of children with autism. They also used pre-post surveys and saw staff stress drop. The pattern is the same: train staff, staff feel better.
Mae Simcoe et al. (2018) went further. Their hospital-wide autism pathway added training plus new rules. Length of stay fell 40 percent. Voss et al. (2021) did not measure patient outcomes, so we do not yet know if better staff confidence leads to shorter stays or fewer crises.
Pak et al. (2024) used caregiver coaching through telehealth. They tracked both parent skill and child progress. Hille’s team only asked staff about themselves. The Dutch model could borrow this dual check in future work.
Why it matters
If you run a day or residential program for adults with ID, you can copy this low-cost trio: info pack, short course, and a follow-up chat. Staff leave feeling ready to start sensitive talks that often get delayed. Track whether these talks actually happen and if families join in—that next step turns confidence into real choice for the people you serve.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Email your team the free ACP info sheet from the Dutch pack and book a 30-minute lunch-and-learn to walk through it together.
02At a glance
03Original abstract
In this article we describe how an advance care planning (ACP) program was developed, implemented, and evaluated. Our aim was to improve ACP in palliative care for people with intellectual disability (ID). The program was based on 10 competencies needed for ACP and was developed in a co-design process with people with ID, relatives, and professionals. The program was implemented in six ID care organizations in the Netherlands and consisted of an information pack, a training course, and an implementation interview about implementing ACP. Professionals indicated that their competencies had improved, particularly regarding communication and the application of ACP as a standard element in palliative care practice. This program therefore seems helpful in training ID care professionals in the competencies needed for ACP.
Intellectual and developmental disabilities, 2021 · doi:10.1352/1934-9556-59.1.39