Understanding symptom occurrence and treatment in the palliative phase for people with intellectual disabilities: a protocol for a mixed-methods study.
7 affiliations
- 1Rotterdam University of Applied Sciences, Rotterdam, The Netherlands. [email protected].
- 2Avans University of Applied Sciences, Breda, Netherlands.
- 3ErasmusMC, Rotterdam, Netherlands.
- 4Ipse de Bruggen, Alphen aan den Rijn, Netherlands.
- 5Prisma, Waalwijk, Netherlands.
- 6Prinsenstichting, Purmerend, Netherlands.
- 7Rotterdam University of Applied Sciences, Rotterdam, The Netherlands.
Abstract
Background
Despite advances in palliative care, people with intellectual disabilities (ID) still face major barriers in accessing timely and appropriate care. They often experience complex symptoms that may be expressed in atypical ways, in combination with multimorbidity and communication challenges. These factors complicate both symptom recognition and treatment. There is limited knowledge on how symptoms evolve and are managed in people with ID during the palliative phases. Better understanding of symptom occurrence and treatment responses can support tailored care.Aim/research question or hypothesis
To improve palliative care for people with ID by gaining insight into the occurrence, course, and treatment of symptoms during the palliative phases.Methods
A descriptive observational study using a mixed-methods approach will be conducted in three Dutch long-term care organisations. Repeated measurements using the Utrecht Symptom Diary adapted for caregivers (USD-z) will be used to assess symptom severity. Treatment strategies (pharmacological and non-pharmacological) will be documented. Additionally, interviews with care providers will explore the reasoning behind treatment decisions. A preceding pilot study confirmed the feasibility and acceptability of the study procedures.Outcome
The study will provide insight into symptom patterns, treatment approaches, and caregiver-perceived treatment effects. It will also explore how and when palliative sedation is applied in response to refractory symptoms in the terminal phase. The integration of quantitative and qualitative data is expected to yield practice-based knowledge directly relevant to daily care.Expected impact
The findings will contribute to improving care (guidelines) and clinical decision-making for people with ID in palliative care, supporting more effective symptom management. Also, this protocol may offer valuable input for future research involving people with complex care needs.
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BibTeX
@article{hofstede2026understanding,
title = {{Understanding symptom occurrence and treatment in the palliative phase for people with intellectual disabilities: a protocol for a mixed-methods study.}},
author = {Z M W Hofstede and M A Echteld and K G Mogendorff and D A M Maes-Festen and W H Oldenmenger and J G Joore and S A M Nieuwhoff-van der Gouw and I H Zaal-Schuller and M M Groot},
journal = {BMC palliative care},
year = {2026},
month = jul,
doi = {10.1186/s12904-026-02253-3},
url = {https://europepmc.org/article/MED/42919226},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Understanding symptom occurrence and treatment in the palliative phase for people with intellectual disabilities: a protocol for a mixed-methods study.
AU - Z M W Hofstede
AU - M A Echteld
AU - K G Mogendorff
AU - D A M Maes-Festen
AU - W H Oldenmenger
AU - J G Joore
AU - S A M Nieuwhoff-van der Gouw
AU - I H Zaal-Schuller
AU - M M Groot
PY - 2026
DA - 2026/07/01
JO - BMC palliative care
DO - 10.1186/s12904-026-02253-3
UR - https://europepmc.org/article/MED/42919226
AB - Background Despite advances in palliative care, people with intellectual disabilities (ID) still face major barriers in accessing timely and appropriate care. They often experience complex symptoms that may be expressed in atypical ways, in combination with multimorbidity and communication challenges. These factors complicate both symptom recognition and treatment. There is limited knowledge on how symptoms evolve and are managed in people with ID during the palliative phases. Better understanding of symptom occurrence and treatment responses can support tailored care.Aim/research question or hypothesis To improve palliative care for people with ID by gaining insight into the occurrence, course, and treatment of symptoms during the palliative phases.Methods A descriptive observational study using a mixed-methods approach will be conducted in three Dutch long-term care organisations. Repeated measurements using the Utrecht Symptom Diary adapted for caregivers (USD-z) will be used to assess symptom severity. Treatment strategies (pharmacological and non-pharmacological) will be documented. Additionally, interviews with care providers will explore the reasoning behind treatment decisions. A preceding pilot study confirmed the feasibility and acceptability of the study procedures.Outcome The study will provide insight into symptom patterns, treatment approaches, and caregiver-perceived treatment effects. It will also explore how and when palliative sedation is applied in response to refractory symptoms in the terminal phase. The integration of quantitative and qualitative data is expected to yield practice-based knowledge directly relevant to daily care.Expected impact The findings will contribute to improving care (guidelines) and clinical decision-making for people with ID in palliative care, supporting more effective symptom management. Also, this protocol may offer valuable input for future research involving people with complex care needs.
SN - 1472-684X
ER -