“I wish they could be in my shoes”: patients’ insights into tertiary health care for type 2 diabetes mellitus

Abstract

BackgroundInsightful accounts of patient experience within a health care system can be valuable for facilitating improvements in service delivery.ObjectiveThe aim of this study was to explore patients’ perceptions and experiences regarding a tertiary hospital Diabetes and Endocrinology outpatient service for the management of type 2 diabetes mellitus (T2DM).MethodNine patients participated in discovery interviews with an independent trained facilitator. Patients’ stories were synthesized thematically using a constant comparative approach.ResultsThree major themes were identified from the patients’ stories: 1) understanding T2DM and diabetes management with subthemes highlighting that specialist care is highly valued by patients who experience a significant burden of diabetes on daily life and who may have low health literacy and low self confidence; 2) relationships with practitioners were viewed critical and perceived lack of empathy impacted the effectiveness of care; and 3) impact of health care systems on service delivery with lack of continuity of care relating to the tertiary hospital model and limitations with appointment bookings negatively impacting on patient experience.DiscussionThe patients’ stories suggest that the expectation of establishing a productive, ongoing relationship with practitioners is highly valued. Tertiary clinics for T2DM are well placed to incorporate novel technological approaches for monitoring and follow-up, which may overcome many of the perceived barriers of traditional service delivery.ConclusionInvesting in strategies that promote patient–practitioner relationships may enhance effectiveness of treatment for T2DM by meeting patient expectations of personalized care. Future changes in service delivery would benefit from incorporating patients as key stakeholders in service evaluation.

Patient Perspectives to Inform a Health Literacy Educational Program: A Systematic Review and Thematic Synthesis of Qualitative Studies

“…Patients indicated that they first needed to accept their situation. After acceptance they realized that they needed to take charge of their own health and care process [22,25,31,46,61,64,66,72,77,80,84,102].…”

Seeing the Person, Not the Illness: Promoting Diabetes Medication Adherence Through Patient-Centered Collaboration

“…Physician empathy is associated with blood glucose control (25) and a lower incidence of acute metabolic complications (26). However, many patients say their providers show little empathy or understanding of their struggle to manage diabetes (27,28). …”

“…Patient-provider collaboration hinges on effective communication (29). Unfortunately, many patients struggle to understand what their providers tell them, yet are reluctant to tell their provider when they feel confused (27). This reluctance is exacerbated for patients with low health literacy, who may feel ashamed of their literacy skills and try to hide their lack of understanding (2).…”

“…Unfortunately, implementing these skills is often challenging in the typical fee-for-service health care system, in which providers have too little time to ask about patients’ diabetes control (40), let alone about their broader lives, well-being, and mental health. Patients frequently complain that providers “go too quickly” (27) and do not have time to get to know them and their concerns (5). Providers report that they lack the training to assess barriers to adherence or to know what to do when certain barriers are identified.…”

“…For example, despite the widespread recognition that psychosocial problems can impair diabetes management, and current American Diabetes Association (ADA) guidelines recommending routine psychosocial screening of all diabetes patients, many providers report insufficient training in assessment and management of psychological difficulties in their patients (41). In addition, many patients lack a consistent provider for diabetes care, creating significant frustration (27) and negatively affecting medication adherence and health outcomes (42,43). …”