Distress in patients with end-stage renal disease: Staff perceptions of barriers to the identification of mild-moderate distress and the provision of emotional support

Abstract

ObjectivesTo explore staff perceptions of barriers to the identification of mild to moderate distress and the provision of emotional support in patients with end-stage renal disease.MethodsQualitative semi-structured interviews with staff in two hospitals (n = 31), with data analysed using a hybrid approach combining thematic analysis with aspects of grounded theory.ResultsStaff appeared very aware that many patients with end-stage renal disease experience distress, and most thought distressed patients should be helped as part of routine care. However, practice was variable and looking for and addressing distress was not embedded in care pathways. Interviews identified six themes: i) staff perceptions about how distress is manifested and what causes distress were variable; ii) staff perceptions of patients could lead to distress being overlooked because patients were thought to hide their distress whilst some groups were assumed to be more prone to distress than others; iii) role perceptions varied, with many staff believing it to be their role but not feeling comfortable with it, with doctors being particularly ambivalent; iv) fears held back some staff, who were concerned about what might happen when talking about distress, or who found the emotional load for themselves to be too high; v) staff felt they lacked skills, confidence and training, vi) capacity to respond may be limited, as staff perceive there to be insufficient time, with little or no specialist support services to refer patients to.ConclusionsStaff perceived significant barriers in identifying and responding to patient distress. Barriers related to skills and knowledge could be addressed through training, with training ideally targeted at staff with positive attitudes, but who currently lack skills and confidence. Barriers related to role perceptions would be harder to address. The study is relevant internationally as part of improving long-term condition pathways.

Emotional distress and adjustment in patients with end-stage kidney disease: A qualitative exploration of patient experience in four hospital trusts in the West Midlands, UK

“…This study has a number of implications for how kidney units could improve the support offered to patients. Pre-dialysis education about both the physical and emotional impacts of treatment would help to manage patients’ expectations about what they may experience, and could go some way towards ‘normalising’ distress within ESKD and preparing patients for some of the potentially negative emotional consequences of treatment [ 30 ]. Helping patients to develop adjustment and coping mechanisms is also essential.…”

“…In terms of how patients can be guided about coping with distress, there seems to be a missing link between patient needs and staff behaviour [ 30 ]. Staff may avoid talking about distress because they are unsure of how to help and may feel unable to resolve patients’ emotional issues.…”

Examining patient distress and unmet need for support across UK renal units with varying models of psychosocial care delivery: a cross-sectional survey study

“…There is the expectation that dialysis staff support patients who experience lower level distress 28 and psychosocial staff are often dependent on dialysis staff to inform, identify and refer patients in need for support to their service. Yet, a recent study by Combes et al 29 found that dialysis staff experience significant barriers in identifying and responding to distress, related to skills and knowledge, but also role perceptions.…”

Assessing knowledge of end-stage kidney disease and treatment options in hospitalized African American patients undergoing hemodialysis

“…42,43 Rates of emotional distress and depression are as high as 35% among racial and ethnic minority patients with ESKD which could lead to increased demands on dialysis clinic staff in minority-serving dialysis facilities. 44,45 To reduce staff strain and improve satisfaction, studies have focused on implementing novel staffing schedules, reducing staff-to-patient ratios, or improving training for dialysis clinic staff. [46][47][48] Several of the changes that interviewees suggested in our study to improve their experience, such as joining a unit affiliated with their preferred hospital or having a clean facility, can be addressed at dialysis initiation when patients "shop" for clinics.…”