Foundation for the Sociology of Health and Illness The development and practice of health literacy in patients with a long-term condition

Transcription

1 Foundation for the Sociology of Health and Illness The development and practice of health literacy in patients with a long-term condition Edwards., Davies, M., Wood, F., and Edwards, A

2 Background Health literacy as: a capacity (IOM 2004) a process (Mancuso 2008) outcome of health education (Nutbeam 2000) evolves over time (Zarcadoolas et al. 2006) represents making sound decisions in a range of settings (Kickbusch and Maag 2008) important in health contexts and across the lifecourse (Kwan et al. 2006)

3 PhD research Aims/Objectives Empirical evidence of how health literacy is practised, what categories of health literacy are there? Ideas about what health literacy is and how it is practised in different health contexts How is health literacy developed? What are the barriers/facilitators? Is it developed in patient education programmes? What role does one s social network have in the development of health literacy? What is the relationship between the development of health literacy and participation in health care consultations? Focus of presentation To explore health literacy is practised and how it might develop over time and in different health contexts. To describe how patients with a long-term condition become more health literate and what do they achieve. To identify health literacy-related facilitators and barriers that affect informed self-care decision making and active participation in health care consultations

4 Design/Method Longitudinal qualitative design 18 participants (Cardiac rehab, Expert patients, X-PERT diabetes, Comparison group) Serial Interviews (2-3 times) Observation (6 week patient education course) Framework Analysis (familiarisation, thematic framework, indexing, charting, mapping & interpretation)

5 Framework (7 themes) Health literacy practices and categories Motivation and barriers to health literacy Accessing Needs (information and care services) Self-management Psychological Impact Decision Making Learning

6 Health Literacy Pathway Model Motivations/ Facilitators/Emotions Level 1 (1) Health Knowledge (2) Health Literacy Skills (3) Health Literacy Actions (4) Production of Informed Options (5) Make an informed decision (a) Increased knowledge and understanding of how to manage condition (b) Active involvement in consultations Level 2 Personal/Professional Barriers/Negative Emotions

7 Motivators and facilitators that help the development of health literacy Personal Motivations Understand symptoms/diagnosis Seeking treatment options Prepared Facilitators Supportive doctors/nurses/physiotherapists/pharmacists Support from friends and family (distributed health literacy skills) Patient education/self-management programmes Emotions Reduce anxiety

8 Barriers to developing and practising health literacy Personal Barriers (non-acceptance, non-disclosure, reluctance to complain, reluctance to seek help, attitude towards information) Emotional Barriers (fear of information, fear of condition, fear of death, fear of surgery, fear of social stigma) Professional barriers (insufficient information, information dismissed, misinformation/conflicting advice, withholding information, focus on disease)

9 Conclusions Health literacy is developed over time and facilitated by interactions and support from others. Friends and family acted as health literacy mediators to distribute health literacy There are both personal and professional barriers to the development and practice of health literacy Those who are more motivated and have access to supportive others are able to develop further along the health literacy pathway

10 Implications Identifying professional barriers Measurements Design of new interventions Community level interventions

11 CFAS WALES Cognitive Functioning and Ageing Centre for Innovative Ageing