Understanding symptom occurrence and treatment in the palliative phase for people with intellectual disabilities: a protocol for a mixed-methods study

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. To improve palliative care for people with ID by gaining insight into the occurrence, course, and treatment of symptoms during the palliative phases. 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. 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. 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.