Background People with intellectual disabilities (ID) have restricted cognitive and communicative abilities, and therefore encounter difficulties in clarifying their wishes and needs. Professionals in ID-care do not always recognize palliative care needs and lack communication skills to talk about future care in advance. Aim of this study was to develop and evaluate an advance care planning (ACP)-program to train professionals in knowledge and skills about ACP in palliative care for people with ID.
Methods This study contained five phases. Phase 1 consisted of a systematic review, (medical)file analysis and supplementary interviews, and depth-interviews to discover important aspects of ACP. These were translated into an ACP-program in co-creation with professionals, relatives and people with ID (phase 2). A communication training framework was developed (phase 3). Implementation of the ACP-program took place in six organizations providing ID-care (phase 4). In phase 5 the program was evaluated by pre-structured questionnaires send to participants of the program.
Results The ACP-program consists of 1.Methodology about important aspects of ACP, 2.ACP communication training, and 3.Consultation about implementation strategies for ACP. It is based on 10 competencies needed for ACP; palliative phase identification, signaling symptoms, communicating, documenting, structurally deploying ACP, taking wishes of people with ID into account, collaborating, paying attention to possible dilemmas, reflecting, and regarding ACP as a standard aspect of palliative care.
Conclusion An ACP program is helpful to make professionals aware of the importance of ACP and improve communication skills. Research is needed to further investigate the effective elements of the ACP program.
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