Evaluating a toolkit for end-of-life care planning with people with intellectual disabilities: an exploration of implementation outcomes within intellectual disability social care services

This study used qualitative surveys and focus groups to evaluate the implementation of an end-of-life care planning toolkit within intellectual disability social care services, by exploring whether it is beneficial and workable in this setting. Participants were staff trialling the toolkit and submitting feedback forms. Focus groups with support staff and service managers were also conducted. Feedback forms and focus group transcripts were coded using a modified framework approach. Data and analyses were discussed within the team (including researchers with intellectual disabilities). Thirty-four participants submitted 44 feedback forms. Two focus groups with seven participants were held. Participants found the toolkit approach and resources acceptable and appropriate, prompting positive eye-opening conversations. There were significant adoption and feasibility implementation challenges such as printing the resources, lack of time, and the sensitive end-of-life topic. Exploration of how to overcome these challenges is needed to successfully implement the toolkit in social care services.