Concepts derived from workshop participants in response to seeding statement grouped by theme (disease or health system). The theme was usually based on the grammatical “object” of the phrase.
| Theme (Object*) | Knowledge, Attitude, Attribute, Relationship, Skill, Action, Context | Statements |
|---|---|---|
| 1. Access to information | Context | Access to information; physical access to information services; have access to information, e.g., internet, data; adaptive equipment to access computer/library; access to medical dictionary |
| Skills | Being able to use Web for access to information; recognize reputable information/Websites/library; IT skills | |
| 2. Cognitive capacity | Attribute | Good memory; ability to shift paradigm |
| 3. Disease | Attitude | Learn to accept and live with your disease; acceptance of condition |
| Knowledge | Understanding active arthritis state compared to [chronic] disease-related effect; knowledge of side effects; learn about disease/diagnosis; understand results (blood tests, scans); understand medical terminology about specific issues; understanding of the specific disease; understand risk/prognosis/impact of disease | |
| 4. Expression/communication | Skills | Ability to say no; guidance to improve communication and coping skills; ability to negotiate; social skills; ability to communicate with health professionals; ability to express values and priorities to healthcare professionals; ability to ask for information |
| 5. Finances | Context | Having money to get healthcare; access to a healthcare plan; get enough money and [to] use it for health |
| 6. Health professionals | Attitude | Trust and be able to mistrust healthcare professional (healthy skepticism) |
| Context | Time — get time from healthcare professional/GP/rheumatologist; physician who is truthful when they don’t know; having GP who will refer to specialist; physician who is willing to treat within your life expectation; access to health professional in a timely manner; health professional time | |
| Knowledge | GPs being trained and up to date | |
| Relationship | Building effective relationships with healthcare professionals | |
| Skills | Know how to access physician | |
| 7. Health system | Context | Access to public health/free healthcare |
| Knowledge | To know/recognize who is the right person/players to help; understanding the health system/reimbursement/incentives | |
| Skills | Knowing how to access/navigate the system if lack funds | |
| 8. Information | Attribute | Clear diagrams are required for information; short statements |
| Context | Having accurate information available | |
| Skills | Read, understand, retain information; learning how to work with health information; ability to put information into context; ability to be critical/skeptical; ability to discern reliable from unreliable information; ability to synthesize information; sense of perspective (relative importance of all information and experiences); capacity to understand disease, receive knowledge; ability to work out what you want to know | |
| 9. Literacy/numeracy | Skills | Speak same language as person from whom information is sought; numeracy skills; ability to read |
| 10. Management skills | Attitude | Consciousness of responsibility for lifestyle and taking medication |
| Skills | Ability to understand a problem is a side effect of treatment; ability to understand what food is unhealthy; ability to make comparisons/weigh up options/make choices; priority setting; ability to seek alternative options; time-keeping skills | |
| 11. Medication | Knowledge | Knowledge of ramifications of medications |
| 12. Patient approach | Attitude | Motivation to seek information/intention; willingness to take personal responsibility; interest in own health; ability to integrate/change/reconcile own cultural/personal beliefs with medical information; allowing oneself permission to seek alternative help; team player willingness; ability to grow from adversity; initiative to go and get it; assertiveness to ask for information |
| Skills | Build own boundaries, rules for wellness; ability to change behavior | |
| 13. Dealing with problems | Skills | Problem solving skills; stress management; deal with fear of medications/hospital/healthcare professional |
| 14. Psychological characteristics | Attitude | Willingness to care about yourself; persistence; patience; sense of humor; confront own issues before can communicate; learn to accept you as you are; feeling able to reconsider/permission to do this; self-confidence; locus of control; confidence to go and get it [what’s needed] |
| Skills | Understanding negative prior experiences in context of own history (“once bitten twice shy”) | |
| 15. Social supports | Action | Become a member of a patient organization |
| Context | Family network; support and learning from patient organization | |
| Relationship | Someone to help get information; ability to engage with social network to either get or use information; social support to assist in understanding | |
| 16. Time | Context | Time to do it |
↵* Object: e.g., disease, health system [In statements with intransitive verbs or verb phrases the inferred grammatical object was simply the noun form of the verb phrase itself; thus the object of “Patient is persistent” is the characteristic, “Patient persistence.”]