Table 3.

Meanings attributed to P3CEQ items in open responses of service users who scored the corresponding item. Ordered from more to less frequent.

	MOST FREQUENTMEANING/REACTION	OTHER FREQUENT MEANINGS/REACTIONS	OTHER MEANINGS/REACTIONS
Q1. Discuss what’s important with care professionals	Recalling (lack of) conversation with specific professional(s) or at a specific time (e.g. first visit), and/or (lack of) solution	Recalling basic interactions with care professionals (e.g. receiving advice, information, medication checks, being told what to do)	Reporting delegation of discussions to family member/friends Qualifying professionals (e.g. being happy with care team, trust, lack of empathy)
Q2. Involved in decisions	Recalling (lack of) being involved in a decision with specific professional(s) or at a specific time (e.g. first visit), and/or (lack of) solution	Recalling basic interactions with care professionals (e.g. receiving explanations, being informed, complaints being listened to, following routines)	Reporting cognitive deterioration as a factor to be taken into account when seeking decisions
Q3. Considered ‘whole person’	Recalling that care professionals(do/do not always or depending on the professional) treat them with e.g. caring attitude, compassion, respect, easy to understand language.		Referring to specific examples of how care professionals (did not) take whole situation into consideration (e.g. beyond clinical approach or criteria, beyond formal job duties) Recalling basic interactions (e.g. being asked ones opinion, receiving advice, being able to access electronic records)
Q4. Repeating information	Recalling how care professionals are (not) aware of conditions and/or can (not) access information (e.g. in the computer, written documentation, when care professionals change).		Recalling details that are not directly relevant to the question.
Q5. Care joined up in a way that works	Recalling how care professionals were (not) communicating, coordinating and aware of different parts of the care process	Qualifying professionals or professional care (e.g. well treated, useful, smooth) Referring to current health situation and (lack of) improved health outcomes	Referring to the existence of care plan that care professionals were following. Giving specific examples of how the coordinated care does (not) work for them (e.g. being visited at home, being visited by the same professional, long waiting lists, timetable of cleaners, coordination between primary and specialist professionals).
Q6. (Single) professional coordinating care	Confirming there is (not) a specific professional or professionals who coordinate care. (e.g the GP, the nurse, the GP and the nurse, one for social and one for health)	Identifying a family/friend as the person they were referring to as in charge of coordinating their care.
Q7. Care planning (overall)	Describing the actions professionals and him/herself were applying as (not) part of a plan		Referring to medication plans or clinical records Referring to different needs that they consider (un)attended
Q8. Support to self-manage	Explaining whether care provided meets their needs		Referring to specific examples when advice or instrumental aid to enhance self-management were (not) being provided Qualifying professionals or professional care (e.g. well treated, helped when needed)
Q9. Information to self-manage	Recalling examples when (un)useful information for self-management was(not) received (e.g nutritional advice, medication adherence advice, overwhelming advice)	Refers to oneself or close persons as self-seeking information for self-management. Refers to receiving information in general.
Q10. Confidence to self-manage	Refers to level of autonomy (physical, cognitive) as explaining level of confidence	Recalls examples of support (not) received and how that impacts level of confidence
Q11a. Wants close ones involved	Identifies the person(s) to be involved. Identifies the person(s) to be involved, and specifies how or why		Explaining reasons for not wanting to involve others (e.g. self-capable, not wanting to be a burden, negative relation with family members)
Q11b. Close ones involved as much as wanted	Identifies persons or occasions when care team has/hasn’t involved as much as wanted.	Identifies the person whohas/hasn’t been involved	Refers to basic relations between care professionals and close ones (e.g. calling them, having them accompany service users to health consultations)