Diabetes distress and health literacy in foot ulcer development and self-care and interventions to improve outcome

Background

People experiencing diabetic foot ulcers generally have low health literacy. Health literacy refers to the combination of personal competencies and situational resources needed for people to access, understand, appraise, and use information and services to make decisions about their health and self-care. Low health literacy limits access to (self-)care and may increase the risk of amputation and/or recidivist foot ulcers. Organizational literacy may be of crucial significance for the prevention of diabetic foot ulcers to people at risk. This refers to the way in which services, organisations, and resources are made available and accessible to people according to their individual health literacy level.

Diabetes distress is the emotional reaction to living with diabetes which can take the many forms including difficulty in self-care of diabetes. Moderate to high levels of diabetes distress are likely to have a negative influence on outcomes of diabetic foot disease and may play a considerable role in the prevention of foot ulcers and amputation; however, knowledge about diabetes distress levels among people with or at high risk of diabetic foot ulcers is very limited – if existing.

This project addresses diabetes distress and health literacy among people with or at high risk of foot ulceration; two potentially important components with influence in terms of the ability to prevent foot ulcers and amputations. The project will investigate the role of these components in foot ulcer development and self-care and how they can be addressed systematically in routine care to improve self-care and prevention of foot ulcers in people at high risk (as identified in WP3). The project will actively involve people with or at risk of foot ulceration and their health professionals in the exploration and development of methods and/or techniques to be pilot tested in clinical practice. The project will deliver a program for communicative and psychosocial support for appropriate health literacy response and to reduce diabetes distress.

Approach

The doctoral candidate will 1) assess diabetes distress levels among people with recidivist foot ulcers or at high risk of ulcer development and 2) explore health literacy needs among people at risk of foot ulcers 3) explore organisational health literacy responsiveness and 4) explore options for initiatives improving equitable communication with and access to healthcare services for people with or at risk of diabetic foot ulcers with a particular focus on improving diabetes distress reduction and organizational health literacy responsiveness. The doctoral candidate will study people with or at risk of ulcer development and health care professionals using the diabetes distress scale (DDS-T1-28/PAID-20) to assess diabetes distress levels, as well as interviews. Existing interventions to reduce diabetes distress will be modified for this population and pilot tested. The candidate will use the Conversational Health Literacy Assessment Tool (CHAT) in interviews and appropriate scales to investigate individual health literacy needs (e.g., Health Literacy Questionnaire (HLQ)). The Ophelia (Optimising health literacy and access) approach will be applied to develop feasible organisational literacy initiatives responding to local needs. The Ophelia approach is a systematic intervention development and testing methodology that entail a series of steps: needs assessment, idea generation, co-designing intervention and testing intervention.

Our research team

Steno Diabetes Center Copenhagen (SDCC) is a diabetes center within the public authority of the Capital Region of Copenhagen. SDCC is the largest diabetes clinic in Scandinavia and treats each year more than 11,000 people with diabetes from the Capital Region. SDCC is organised in four departments (Patient Care, Clinical Research, Health Promotion Research, and Education) that work closely together around the unifying focus of translational research, diabetes care, and prevention. The doctoral candidate will be part of the Diabetes Management Research group which is embedded within the Health Promotion Research Department. The candidate will learn from and collaborate with a multidisciplinary team of clinicians and researchers. The doctoral candidate will also work together with another doctoral candidate from DIALECT at SDCC who, in an epidemiologic study, focuses on ulcer risk stratification in high-risk people with diabetes.

External supervision in this project comes from DIALECT partners at Amsterdam University Medical Centers (AMC, Amsterdam, the Netherlands) and King’s College Hospital (KCH, London, United Kingdom). Amsterdam UMC is a leading institute in the world on biomechanical and clinical research on diabetic foot disease, in particular on the prevention of foot ulceration and amputation. The Diabetic Foot Clinic at King’s College Hospital is renowned for their multidisciplinary treatment of people with diabetic foot disease, and has a longstanding clinical and research experience in this field.

Steno Diabetes Center Copenhagen

Steno Diabetes Center Copenhagen (SDCC) is a diabetes center within the public authority of the Capital Region of Copenhagen. SDCC is the largest diabetes clinic in Scandinavia and treats each year more than 11,000 people with diabetes from the Capital Region. The ambition of SDCC is to improve the entire field of diabetes in the Capital Region, but also to contribute with inspiration and new knowledge nationally and internationally.