Theme 5: “I need to fully participate in making my decisions”
This theme reflected the participants’ engagement in the decision making process and reflected their growing confidence as they became more proficient in the use of the adapted OPDG with the support of their decision coach. During interviews, participants related experiences in which they expressed frustration and anxiety leading to low confidence about being able to receive help needed from health care providers, and their low expectations about positive care experiences. For instance, following the coach’s introduction of the adapted OPDG, one participant, Alicia, was silent, and when asked by the coach if it was okay to start, Alicia stated,“I am a good reader” and continued to remain silent.This was interpreted by the coach to mean that the participant required additional support. The coach assisted Alicia with the adapted OPDG, and Alicia responded and became progressively more confident in directing the coach in the use of the adapted OPDG, and to make comments to help with further adaptation. She explained
why she wanted this support: “It’s just hard to answer –I’ve never done anything like this before – a paper or making a decision like this”.