UNIVERSITY OF SOUTHAMPTON Faculty of Health Sciences Centre for Innovation and Leadership in Health Sciences Exploring the facilitators and barriers to meeting older adults’ health literacy needs in clinical practice by Charlotte Brooks Thesis for the degree of Doctor of Philosophy February 2016 UNIVERSITY OF SOUTHAMPTON ABSTRACT FACULTY OF HEALTH SCIENCES Thesis for the degree of Doctor of Philosophy EXPLORING THE FACILITATORS AND BARRIERS TO MEETING OLDER ADULTS’ HEALTH LITERACY NEEDS IN CLINICAL PRACTICE by Charlotte Brooks Background and aim Health literacy is a term used to describe the ability of individuals to access, understand and use health information. Lower health literacy levels are associated with increased mortality and morbidity, and are more prevalent in older adult populations. UK NHS policy advocates meaningful patient engagement in healthcare. Vital health information is often inaccessible and older adults are not always sufficiently supported by healthcare providers to meaningfully engage with healthcare decisions.
There is little research in this area. This research aimed to identify facilitators and barriers to meeting older adults’ health literacy needs in clinical practice, from patients’ and healthcare providers’ perspectives. Methods This research comprised two discrete but interconnecting phases; the findings from the first phase led to the development of the second. The first phase involved conducting semi-structured interviews with nine older adults (aged 65 years and over) attending a falls clinic in the South of England.
Participants’ health literacy was measured using the Rapid Estimate of Adult Literacy in Medicine and the Newest Vital Sign-UK. Interviews explored older adults’ views and experiences about access to the service, provider-patient interaction and self-management. Interpretative phenomenological analysis was used to interrogate the data. The second phase involved four focus groups with 22 healthcare providers working with older adults, and explored views about meeting older adults’ health literacy needs.
Framework analysis was applied to the focus group data. Findings Both phases of the research revealed the importance of building relationships and trust, tailoring healthcare information to individuals’ needs and social support when meeting older adults’ health literacy needs. Limitations or concerns about the use of health literacy screening were also identified in both phases. All older adult participants emphasised the importance of clear and simple communication; contrastingly, the healthcare providers expressed strong reservations about using ‘universal precautions’ with all patients.
Healthcare providers also had low awareness about health literacy and appeared to shift the responsibility for development of health literacy onto public health and education sectors. Conclusion and implications for clinical practice The findings corroborate other research emphasising the essential role of face-to- face interactions in meeting older adults’ health literacy needs and recognising health literacy as an interaction between individuals’ personal capabilities and the demands of healthcare systems. This research uniquely identifies issues with the transference of the holistic health literacy concept to a UK healthcare setting, such as healthcare providers viewing health literacy as a static risk and shifting responsibility for development of health literacy onto public health and education sectors. This is the first study to qualitatively compare health literacy screening and universal precautions from healthcare providers’ and older adults’ perspectives, revealing practical and emotional issues with both approaches.
The research also reinforces the importance of trust, tailoring interactions to older adults’ unique attributes and goals and preferred learning and communication styles and social support. To engage older adults meaningfully in their healthcare, healthcare providers need support to develop their skills to meet their patients’ health literacy needs. The findings also highlight that further research is needed to develop effective health literacy interventions for older adults and to ascertain the acceptability and utility of using health literacy screening or universal precautions with older adult patients. Table of Contents Table of Contents.
i List of Tables. ix List of Figures. xi DECLARATION OF AUTHORSHIP. xv Definitions and Abbreviations.
xvii Definition of terms. xvii Abbreviations used in thesis. xix Chapter 1: Background and rationale for this research .2 Development of interest in health literacy from a clinical and personal perspective .3 Literacy and health literacy as distinct but interconnecting concepts.4 Differing definitions of health literacy and the definition chosen for this research .5 The health literacy framework and model chosen for this research .6 Different conceptualisations of health literacy .1 Health literacy as a static clinical ‘risk’ .2 Health literacy as a dynamic ‘asset’ .3 Implications of framing health literacy as a static clinical risk or dynamic asset for clinical practice .7 Relevance of health literacy in an older adult population .8 Meeting older adults’ health literacy needs in clinical practice .1 ‘Risk’ based approaches to meeting older adults’ health literacy needs in clinical practice and whether these needs are being met .2 ‘Asset’ based approaches to meeting older adults’ health literacy needs in clinical practice .3 Factors affecting the integration of health literacy into clinical practice .9 Overview of the thesis. 24 i Chapter 2: Literature review .2 Aims of the literature review .4 Part One: Older adults’ health literacy views and experiences .1 Older adults’ health literacy experiences and the influence of sensory impairments.2 Older adults’ health literacy experiences as differentiated by their assessed health literacy levels or socioeconomic status.3 Older adults’ health literacy experiences and the influence of social support .5 Part Two: Suitability of using health literacy screening tools or universal precautions with an older adult population in clinical practice.1 Suitability of using health literacy screening tools with an older adult population in clinical practice.2 Universal precautions as an alternative to health literacy screening .6 Part Three: Healthcare provider factors affecting the implementation of health literacy strategies in clinical practice .1 Healthcare providers’ awareness and understanding of health literacy .2 Healthcare providers’ perceptions about meeting older adults’ health literacy needs .7 Summary of literature review .8 Aims and objectives of the research.
53 Chapter 3: Methodological considerations for this programme of research .2 Phases of the research .3 Justification of methodological approach .1 The researcher’s ontological and epistemological position .2 Use of qualitative methodology in both studies .3 Justification for use of both Interpretative Phenomenological Analysis (IPA) and the framework approach.4 Enhancing trustworthiness in qualitative research. 68 Chapter 4: Methods for first phase of the research involving interviews with older adults .1 Setting and context for first phase of the research .4 Inclusion and exclusion criteria for participants .5 Use of semi-structured interviews .6 Instruments and tools used for data collection .7 Development of the recruitment documentation and recruitment strategy 81 4.5 Recruitment and data collection procedures .3 Procedure for conducting interviews .2 Use of computer software packages during analysis .3 Data analysis procedures. 93 Chapter 5: Findings from first phase of the research involving interviews with older adults .2 Participant characteristics and acceptability/practicality of the health literacy screening tools administered during interviews .2 Acceptability and practicality of the health literacy screening tools administered during the interviews .4 Overview of superordinate themes .5 Superordinate theme one: Relationship building and trust as a facilitator to meeting older adults’ health literacy needs .1 Relationship building involving transport staff .2 Relationship building involving catering staff .3 Relationship building and trust involving healthcare providers .4 Relationship building involving other falls clinic attendees .6 Superordinate theme two: Tailoring of education and healthcare to older adults’ needs and preferences as a facilitator to meeting older adults’ health literacy needs .1 Tailoring healthcare to older adults’ personal reason for attendance .2 Tailoring of written information .3 Tailoring healthcare to communication style preferences.4 Tailoring healthcare to communication content and format preferences .5 Tailoring healthcare education to learning style preferences .7 Superordinate theme three: Use of social support to manage health .1 The tension between valuing social support and not wanting to be a burden .2 Assistance from social support to manage memory difficulties. 132 Chapter 6: Iterative process between phase one and phase two of the research .1 Relationship building and trust .3 Use of social support to self-manage health .2 Summary and conclusion.
136 iv Chapter 7: Methods for second phase of the research involving focus groups with healthcare providers .1 Setting and context for second phase of the research .3 Sample size and focus group composition .4 Inclusion and exclusion criteria for sample with justification .5 Use of focus groups .6 Instruments and tools used for data collection .5 Recruitment and data collection procedures .2 Pilot focus group .3 Procedure for conducting focus groups .2 Use of computer software packages during analysis .3 Data analysis procedures. 156 Chapter 8: Findings from second phase of the research involving focus groups with healthcare providers .3 Overview of main themes .4 Theme one: Low knowledge and awareness about health literacy .1 Lack of prior knowledge and awareness of health literacy .2 Understanding of health literacy concept .5 Theme two: Identifying older adults’ health literacy levels .1 Strategies for identifying older adults’ health literacy levels .2 Facilitators and barriers to identifying older adults’ health literacy levels 175 8.6 Theme three: Views about using health literacy screening tools and universal precautions .1 Using health literacy screening tools .2 Using universal precautions .7 Theme four: Importance of relationship and trust building, tailoring interactions and social support when meeting older adults’ health literacy needs .1 Building relationships and trust .2 Tailoring interactions to older adults’ health literacy preferences and needs .3 Facilitator: Using older adults’ social support networks to fill gaps in the service .8 Theme five: Facilitators and barriers to the integration of and development of health literacy abilities in clinical practice .1 Facilitator/barrier: Level of importance healthcare providers place on considering health literacy .2 Barrier: Healthcare providers not feeling responsible for the development of health literacy .3 Facilitator: Raising knowledge and awareness of health literacy through training and education. 205 Chapter 9: Discussion and conclusion.2 Overview of findings .3 Discussion of main findings .1 Knowledge and awareness of health literacy in clinical practice .2 Identifying older adults’ health literacy levels in clinical practice .3 Using universal precautions as an alternative to health literacy screening.4 Relationship building and trust, tailored interactions and social support .5 Facilitators and barriers to meeting older adults’ health literacy needs in clinical practice .1 Use of Patient and Public Involvement and designing research according to health literacy principles .2 Use of two different qualitative approaches .3 Utility of the health literacy framework and model used in thesis .4 Utility of health literacy screening for first phase of the research .5 Strengths and limitations of the research .6 Implications of findings for meeting older adults’ health literacy needs in clinical practice .7 Suggested future directions for research .8 Conclusion of thesis. 247 Appendix A List of dissemination activities.
249 Appendix B Model of the causal pathways linking health literacy to health outcomes (Paasche-Orlow & Wolf 2007). 253 Appendix C Search strategy for literature review. 255 Appendix D Flow diagram for literature review. 259 Appendix E Recruitment poster for first phase.
261 Appendix F Recruitment leaflet for first phase. 263 Appendix G Letter of invitation to participants for first phase. 265 Appendix H Participant information sheet for first phase. 267 Appendix I Consent form for first phase.
271 Appendix J Interview guide for first phase. 273 Appendix K Sociodemographic questionnaire for first phase. 275 Appendix L Transcription protocol used for both phases of the research. 281 Appendix M Participant portraits for first phase.
285 Appendix N Summary of research findings sent to falls clinic. 291 Appendix O Summary of research findings sent to older adult participants in first phase. 297 Appendix P Recruitment E-mail sent to healthcare providers in second phase. 299 Appendix Q Participant information sheet for healthcare providers in second phase.
301 vii Appendix R Consent form for healthcare providers in second phase. 305 Appendix S Focus group topic guide (used for pilot focus group) in second phase. 307 Appendix T Focus group topic guide (version used after pilot focus group) for second phase .