Understanding the enablers and barriers to implementing a patient-led escalation system: a qualitative study.

BACKGROUND: The management of acute deterioration following surgery remains highly variable. Patients and families can play an important role in identifying early signs of deterioration but effective contribution to escalation of care can be practically difficult to achieve. This paper reports the enablers and barriers to the implementation of patient-led escalation systems found during a process evaluation of a quality improvement programme Rescue for Emergency Surgery Patients Observed to uNdergo acute Deterioration (RESPOND). METHODS: The research used ethnographic methods, including over 100 hours of observations on surgical units in three English hospitals in order to understand the everyday context of care. Observations focused on the coordination of activities such as handovers and how rescue featured as part of this. We also conducted 27 interviews with a range of clinical and managerial staff and patients. We employed a thematic analysis approach, combined with a theoretically focused implementation coding framework, based on Normalisation Process Theory. RESULTS: We found that organisational infrastructural support in the form of a leadership support and clinical care outreach teams with capacity were enablers in implementing the patient-led escalation system. Barriers to implementation included making changes to professional practice without discussing the value and legitimacy of operationalising patient concerns, and ensuring equity of use. We found that organisational work is needed to overcome patient fears about disrupting social and cultural norms. CONCLUSIONS: This paper reveals the need for infrastructural support to facilitate the implementation of a patient-led escalation system, and leadership support to normalise the everyday process of involving patients and families in escalation. This type of system may not achieve its goals without properly understanding and addressing the concerns of both nurses and patients.

A scoping review of the qualitative literature reporting experiences of living with a stoma for inflammatory bowel disease.

AIMS: Surgical treatment for inflammatory bowel disease (IBD) potentially includes stoma formation. Although positive clinical outcomes are widely reported, patients' responses to stoma surgery, including coming to terms with and adjusting to the stoma, vary widely. This scoping review charts the qualitative literature addressing the question: What is known about any personal psychosocial and quality of life factors that inform adjustment to living well with an intestinal stoma for IBD? DESIGN: A scoping review methodology was employed. DATA SOURCES: Searches of Scopus, Web of Science, CINAHL, Medline and PsycInfo in August 2023. REVIEW METHODS: Levac et al.'s (2010) methodology was followed. PRISMA-ScR guidelines were adhered to. RESULTS: Thirteen cross-sectional studies were included, involving a total of 142 participants. Four themes were identified: (1) facilitative factors; (2) barriers to adjustment; (3) personal attributes; and (4) time and temporality. Data indicate that personal and psychological factors influence adjustment, but not how this occurs. Adjustment takes longer to achieve than is conventionally (clinically) expected. CONCLUSION: All available evidence is cross-sectional. The identified gap in the evidence is the notable lack of longitudinal research to assess, monitor and understand the complex process of adjustment in people with IBD having stoma-forming surgery. Detailed understanding of the process of adjustment would enable more targeted support for patients preparing for, and learning to live with, a stoma for IBD. IMPACT: This paper highlights the need to understand the multiple personal and psychosocial factors that affect adjustment to life with a stoma and identifies that adjustment takes significantly longer than the few weeks required to become competent in managing the stoma. PATIENT OR PUBLIC CONTRIBUTION: Not applicable.

Non-pharmacological interventions to improve sleep quality and quantity for hospitalized adult patients-co-produced study with surgical patient partners: systematic review.

BACKGROUND: Hospitalized patients experience sleep disruption with consequential physiological and psychological effects. Surgical patients are particularly at risk due to surgical stress and postoperative pain. This systematic review aimed to identify non-pharmacological interventions for improving sleep and exploring their effects on sleep-related and clinical outcomes. METHODS: A systematic literature search was performed in accordance with PRISMA guidelines and was preregistered on the Open Science Framework (doi: 10.17605/OSF.IO/EA6BN) and last updated in November 2023. Studies that evaluated non-pharmacological interventions for hospitalized, adult patients were included. Thematic content analysis was performed to identify hypothesized mechanisms of action and modes of administration, in collaboration with a patient partner. Risk of bias assessment was performed using the Cochrane Risk Of Bias (ROB) or Risk Of Bias In Non-Randomized Studies - of Interventions (ROBINS-I) tools. RESULTS: A total of 59 eligible studies and data from 14 035 patients were included; 28 (47.5%) were randomized trials and 26 included surgical patients (10 trials). Thirteen unique non-pharmacological interventions were identified, 17 sleep measures and 7 linked health-related outcomes. Thematic analysis revealed two major themes for improving sleep in hospital inpatients: enhancing the sleep environment and utilizing relaxation and mindfulness techniques. Two methods of administration, self-administered and carer-administered, were identified. Environmental interventions, such as physical aids, and relaxation interventions, including aromatherapy, showed benefits to sleep measures. There was a lack of standardized sleep measurement and an overall moderate to high risk of bias across all studies. CONCLUSIONS: This systematic review has identified several sleep interventions that are likely to benefit adult surgical patients, but there remains a lack of high-quality evidence to support their routine implementation.

Habit training versus habit training with direct visual biofeedback in adults with chronic constipation: A randomized controlled trial.

AIM: The aim was to determine whether specialist-led habit training using Habit Training with Biofeedback (HTBF) is more effective than specialist-led habit training alone (HT) for chronic constipation and whether outcomes of interventions are improved by stratification to HTBF or HT based on diagnosis (functional defaecation disorder vs. no functional defaecation disorder) by radio-physiological investigations (INVEST). METHOD: This was a parallel three-arm randomized single-blinded controlled trial, permitting two randomized comparisons: HTBF versus HT alone; INVEST- versus no-INVEST-guided intervention. The inclusion criteria were age 18-70 years; attending specialist hospitals in England; self-reported constipation for >6 months; refractory to basic treatment. The main exclusions were secondary constipation and previous experience of the trial interventions. The primary outcome was the mean change in Patient Assessment of Constipation Quality of Life score at 6 months on intention to treat. The secondary outcomes were validated disease-specific and psychological questionnaires and cost-effectiveness (based on EQ-5D-5L). RESULTS: In all, 182 patients were randomized 3:3:2 (target 384): HT n = 68; HTBF n = 68; INVEST-guided treatment n = 46. All interventions had similar reductions (improvement) in the primary outcome at 6 months (approximately -0.8 points of a 4-point scale) with no statistically significant difference between HT and HTBF (-0.03 points; 95% CI -0.33 to 0.27; P = 0.85) or INVEST versus no-INVEST (0.22; -0.11 to 0.55; P = 0.19). Secondary outcomes showed a benefit for all interventions with no evidence of greater cost-effectiveness of HTBF or INVEST compared with HT. CONCLUSION: The results of the study at 6 months were inconclusive. However, with the caveat of under-recruitment and further attrition at 6 months, a simple, cheaper approach to intervention may be as clinically effective and more cost-effective than more complex and invasive approaches.

Am I safe? An Interpretative Phenomenological Analysis of Vulnerability as Experienced by Patients With Complications Following Surgery.

Abdominal surgery carries with it risks of complications. Little is known about patients' experiences of post-surgical deterioration. There is a real need to understand the psychosocial as well as the biological aspects of deterioration in order to improve care and outcomes for patients. Drawing on in-depth interviews with seven abdominal surgery survivors, we present an idiographic account of participants' experiences, situating their contribution to safety within their personal lived experiences and meaning-making of these episodes of deterioration. Our analysis reveals an overarching group experiential theme of vulnerability in relation to participants' experiences of complications after abdominal surgery. This encapsulates the uncertainty of the situation all the participants found themselves in, and the nature and seriousness of their health conditions. The extent of participants' vulnerability is revealed by detailing how they made sense of their experience, how they negotiated feelings of (un)safety drawing on their relationships with family and staff and the legacy of feelings they were left with when their expectations of care (care as imagined) did not meet the reality of their experiences (care as received). The participants' experiences highlight the power imbalance between patients and professionals in terms of whose knowledge counts within the hospital context. The study reveals the potential for epistemic injustice to arise when patients' concerns are ignored or dismissed. Our data has implications for designing strategies to enable escalation of care, both in terms of supporting staff to deliver compassionate care, and in strengthening patient and family involvement in rescue processes.

Peer support for carers and patients with inflammatory bowel disease: a systematic review.

BACKGROUND: The support provided by people with the same condition, including inflammatory bowel diseases (IBD), has the potential to improve a range of psychosocial outcomes by allowing people with the disease to receive emotional support as well as to learn coping strategies from more experienced peers. The aim of this systematic review was to summarise the evidence on peer support interventions and their effectiveness on people with IBD. METHODS: Bibliographic databases, conference proceedings, grey literature, and clinical trial registers were searched from inception to November 2021. Comparative and single-arm studies that evaluated interventions that were solely or contained in part peer support, for people with IBD and/or their carers of any age and in any setting were included. Effectiveness was evaluated using outcomes relating to physical and psychosocial function, disease control and healthcare utilisation. Data for each outcome were tabulated and presented in a narrative synthesis. Study design specific tools were used to assess risk of bias. Study selection and risk of bias assessment were undertaken by two reviewers independently. RESULTS: Fourteen completed studies and five ongoing studies met the inclusion criteria. Substantial heterogeneity was observed in the studies in relation to the intervention type and peer support was usually part of a wider intervention. All but one study analysed the total effect of the intervention, so it was not possible to fully isolate the effect of the peer support alone. The appropriateness of outcomes and outcome measurement tools for the assessment of effects was a further key issue. As such, overall, no significant evidence of beneficial effects of peer support interventions on quality of life and other psychosocial outcomes was found. CONCLUSIONS: New randomised controlled trials designed to isolate the effects of peer support are needed to evaluate the (net) effects of peer support only. Agreement on the outcomes to be targeted, and the choice of reliable and validated measurement tools for standalone peer support interventions would provide a focus for further intervention design and evaluation. SYSTEMATIC REVIEW REGISTRATION: The protocol was accepted in the international prospective register of systematic reviews (PROSPERO CRD42020168817).

Peer support for people with chronic conditions: a systematic review of reviews.

BACKGROUND: People with chronic conditions experience functional impairment, lower quality of life, and greater economic hardship and poverty. Social isolation and loneliness are common for people with chronic conditions, with multiple co-occurring chronic conditions predicting an increased risk of loneliness. Peer support is a socially driven intervention involving people with lived experience of a condition helping others to manage the same condition, potentially offering a sense of connectedness and purpose, and experiential knowledge to manage disease. However, it is unclear what outcomes are important to patients across the spectrum of chronic conditions, what works and for whom. The aims of this review were to (1) collate peer support intervention components, (2) collate the outcome domains used to evaluate peer support, (3) synthesise evidence of effectiveness, and (4) identify the mechanisms of effect, for people with chronic conditions. METHODS: A systematic review of reviews was conducted. Reviews were included if they reported on formal peer support between adults or children with one or more chronic condition. Data were analysed using narrative synthesis. RESULTS: The search identified 6222 unique publications. Thirty-one publications were eligible for inclusion. Components of peer support were organised into nine categories: social support, psychological support, practical support, empowerment, condition monitoring and treatment adherence, informational support, behavioural change, encouragement and motivation, and physical training. Fifty-five outcome domains were identified. Quality of life, and self-efficacy were the most measured outcome domains identified. Most reviews reported positive but non-significant effects. CONCLUSIONS: The effectiveness of peer support is unclear and there are inconsistencies in how peers are defined, a lack of clarity in research design and intervention reporting, and widely variable outcome measurement. This review presents a range of components of peer support interventions that may be of interest to clinicians developing new support programmes. However, it is unclear precisely what components to use and with whom. Therefore, implementation of support in different clinical settings may benefit from participatory action research so that services may reflect local need.