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.

Stoma care and diet in the community.

Community nurses are often the common link with people in the community with healthcare services. Community nurses are involved in the care of people living with a temporary or permanent stoma and might be asked specialist questions of which they may feel uncertain of appropriate responses. This article describes some basic facts about stoma as well as specialist dietary considerations; which can be used to improve symptoms such as constipation as well as how to prevent issues such as a food bolus obstruction. An increased understanding of stoma-related dietary needs among community nurses will likely improve care outcomes, as they will feel more equipped to offer tailored guidance and support.

The role of the clinical nurse specialist in stoma care: A modified Delphi consensus.

INTRODUCTION: The role of the clinical nurse specialist is complex but is defined differently across the world. The role of clinical nurse specialist stoma care is undefined and it is uncertain what aspects of the role are included in the general day-to-day working role. AIMS: The aim was to gain consensus opinion to answer the research question: 'What is the role of the clinical nurse specialist in stoma care?' DESIGN: Delphi consensus. METHODS: Previous data gained from a scoping review and expert consultation was utilized to form role statements. At a UK conference the 13 statements and 173 sub-categories were voted upon. Consensus was agreed if 75% of voters voted agree or strongly agree. Two stages of voting occurred with results from the first vote being shared in the second voting session. RESULTS: All 13 statement and most (150/193) statement sub-categories reached consensus, with 20 sub-categories added during voting session one. CONCLUSIONS: The four pillars of advanced practice were met by the 13 statements with clinical and education reaching higher consensus and agreement than leadership/management and research. The results of the consensus study provide a clearer articulation of the clinical nurse specialist stoma care role, which is complex and multifaceted which has not been described previously. IMPLICATIONS FOR PRACTICE: Consideration of role evolution is made possible, to gain a greater expertise in the scope of practice it is necessary to include prescribing, management and research which could improve service delivery and optimize patient outcomes. There was no patient or public contribution, which in hindsight would have potentially improved the process but it was considered that patients might not recognize the full role of the nurse, understanding only aspects of the role that were patient-centred. PATIENT OR PUBLIC CONTRIBUTION: No patients or public were involved in any aspect of this paper-in hindsight this might have been useful.

Stoma care: the role of community nurses.

There are many benefits of standardised care but often this is not possible due to variations in the availability of healthcare resources in the UK. Within stoma care, there is evidence to guide care but with limited standardisation, particularly for community nurses. Stoma care is provided inconsistently, possibly due to variations in training and experience of the nurse. It is known that patients have greater needs in the first few months after stoma formation and this need for support is compounded if there are stoma complications. Community nurses can provide practical support and information, as well as psychological support and encouragement to help people become independent with stoma care and adapt to life with a stoma.

"You're just on your own": Exploring bowel symptom management needs after rectal cancer surgery through patient and clinician focus groups.

PURPOSE: Currently cancer survivorship often leaves the needs of patients unidentified and unmet. The study aims to establish the views of experts on managing bowel symptoms following rectal cancer surgery. METHOD: People living with bowel symptoms as well as clinicians with expertise in rectal cancer and subsequent bowel changes were invited to participate in online focus groups. Focus groups were recorded, transcribed verbatim and analysed using a modified framework analysis. Results were presented narratively with interpretations and quotations. RESULTS: Fourteen patients following rectal cancer treatment attended one of two focus groups. Sixteen clinicians attended one of four groups. Participants described their opinions about bowel symptom management. Three themes were described by both patients and clinicians: expectations of bodily changes, supported self-repair and knowledgeable self-repair. Data from participants frequently concurred; all recognised clinicians needed to support and empower patients to independently manage their cancer consequences. CONCLUSION: Well-managed expectations enable patients to set realistic goals and make plans. Clinicians need to support patients to understand potential bowel changes that might occur after rectal cancer surgery, providing support, information and signposting to other relevant information and colleagues. Effective communication through avoidance of jargon and rapport building as well as providing a point of contact help prevent patients feeling alone with their symptoms. Education is needed by both clinicians and patients to ensure consistent and useful advice is provided and understood. A recommendation from the focus groups is to create opportunities for patients to access information with clinician support and signposting.

The role of the clinical nurse specialist in stoma care: a scoping review.

AIM: Rapidly evolving roles in nursing require exploration and description. This review aims to examine the role of the clinical nurse specialist (CNS) in stoma care from the UK perspective. DESIGN: A scoping review was undertaken using the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines. Data were synthesised using content analysis to derive meaning units and themes. DATA SOURCES: Three electronic databases were used to conduct the search: Embase, AMED and Ovid Medline. Additional sources identified through the reference lists of included studies and guidelines were also included. METHODS: Two reviewers undertook the search for articles that described the role of the stoma care CNS in the UK. Any disagreements were to be resolved through discussion. RESULTS: Seven papers met the eligibility criteria. Analysis resulted in 184 unique meaning units. Meaning units were grouped into themes reflecting the four pillars of advanced practice: advanced clinical practice; leadership; facilitation of education and learning; and evidence, research and development. The fewest meaning units were attributed to the evidence theme (n=13) and the most related to advanced clinical practice (n=107) such as having specialist knowledge and skills to manage complications. CONCLUSION: The stoma care CNS role reflects the four pillars of advanced practice. These practitioners are valuable, carrying out a complex role that involves high-level, specialist decision-making skills. The results from this scoping review could be useful in service development; they will be used to inform the Association of Stoma Care Nurses UK modified Delphi consensus to examine the views of stoma care CNS practitioners.

Stoma product selection: an update.

There are three main output stomas-colostomy, ileostomy and urostomy. Each of these requires a different stoma appliance to collect and contain the stoma output. This article discusses stoma product selection, things to consider before choosing a product, as well as caring for the stoma.

'He's a surgeon, like I'm not going to waste his time': interviews to determine healthcare needs of people with low anterior resection syndrome after rectal cancer surgery.

AIM: The aim of this study was to determine the views of people on their healthcare needs when managing their bowel symptoms following an anterior resection. METHOD: One-to-one, semi-structured interviews were undertaken, after consent and completion of three questionnaires. Results were analysed using a modified framework analysis and presented narratively. RESULTS: Twenty three participants aged 38-75 years were interviewed; 10 were men. Most had low anterior resection syndrome (LARS) scores indicating 'major LARS', Bowel Function Index scores ranged from 28 to 65. The two most bothersome symptoms were faecal incontinence and unpredictable bowel function. Data were grouped into three broad themes: 'treatment consequences', 'strategies and compromises' and 'healthcare needs.' Each theme had four subthemes, such as 'bowel dysfunction' in the theme 'treatment consequences'. Bowel symptoms were common and persistent. Symptom management often required multiple interventions. Expressed healthcare needs included managing expectations through clinician-led information. Participants needed knowledgeable clinicians to enquire about and assess symptoms, provide and reiterate information as well as making an onward referral to enable symptom management. Peers improved the adaptation process through support and advice. Our findings indicate that participants' needs are not being fully met. CONCLUSION: People with LARS have unmet healthcare requirements needed to meet their individual goals. We propose these are addressed by using the acronym 'LARS': a Learned clinician who Asks and assesses bowel symptoms, Revisiting the topic to address new or persisting symptoms as well as Signposting, advising or referring onwards as needed.

Intervention pathways for low anterior resection syndrome after sphincter-saving rectal cancer surgery: A systematic scoping review.

AIM: Low anterior resection syndrome (LARS) has a large impact on patients' quality of life. Several heterogeneous intervention pathways are suggested in the literature. The steps and timing of the different steps in the pathways are unclear. This systematic scoping review aims to map the range of intervention pathways for LARS after sphincter-saving rectal cancer surgery. METHODS: A search was undertaken on four databases (CINAHL, EMBASE, PubMed, and Web of Science). Any type of paper describing intervention pathways for patients with LARS following sphincter-saving surgery was included. Excluded were patients with a stoma, no full paper, no intervention pathway and not being written in English or Dutch. The review was registered with Open Science Framework (10.17605/OSF.IO/JB5H8). Narrative synthesis of the results was performed by charting and summarising key results. RESULTS: A total of 373 records were screened and 12 papers were included. There was a high variability among the intervention pathways, including which patients should be included. The number of pathway steps ranged from 2-6. Most intervention pathways were treatment-led. Intervention options ranged from conservative measures to a permanent stoma. Pathway flow was highly variable and sometimes not well described, with different or no timings provided for the start, progression, or end of the pathways. Three studies discussed the use of a nurse to coordinate the pathway. CONCLUSION: This systematic scoping review shows that despite similarities in treatment options there are variations in which treatments are included, when treatments should be instigated, and even which patients should be treated.

The community nurse and stoma care.

Community nurses will have people with a stoma on their caseload, and a reminder about stoma and stoma care will hopefully increase confidence and, subsequently, care. There are approximately 205 000 people in the UK with a stoma; it is a common condition, with approximately one in every 340 people having a stoma. While quality of life with a stoma can be good, problems can occur, such as a leaking appliance that results in skin damage. Skin damage can occur for all people with a stoma, but is more common for people with an ileostomy. Appliance leakage can increase stoma care costs, time, financially as well as a decrease in quality of life, so it is important to be able to address issues when they arise or refer on as necessary.

Stoma product selection: a guide for community nurses.

With 205 000 people in the UK with a stoma, it is likely that community nurses will need to consider which stoma products are most appropriate to use with this group of patients. This article explores the three output stomas, what stoma appliances are most commonly used for each type of stoma and why. Understanding how often stoma appliances should be changed empowers the community nurse in their decision-making process to ascertain whether changes to current care are needed. There is also information available about some of the more commonly used stoma accessories and when these may be necessary. With so many stoma-related products available, it can be difficult to know what to use and when; therefore, this article seeks to offer data to aid stoma care in the community.

Stoma-related considerations in palliative patients.

In the community there are about 200 000 people with a stoma. Some of these may have been performed as a palliative procedure to relieve a bowel obstruction, for example. Alternatively, the condition of the patient may have altered. A person with a stoma may, for many reasons, be approaching the end of life. There are a number of stoma-related issues that can occur at the end of life as a result of cancer treatment, such as skin around the stoma being damaged as a result of chemotherapy or changes in weight. In the palliative setting, patients may no longer be able to independently care for their stoma and may require assistance from the community nurse. Input from the community nurse may include information on changing stool consistency, as a result of disease progression or cancer treatment. Alternatively, nursing input might be necessary to train carers to perform stoma care. Community nurses can also provide knowledge to patients to improve understanding and decrease anxiety at the end of life.

Convexity in stoma care: developing a new ASCN UK guideline on the appropriate use of convex products.

One of the biggest challenges for specialist stoma care nurses (SCNs) caring for anyone living with a stoma is that of being confronted with a problematic stoma. This can be described as an ostomy that continues to cause leakage issues for the patient which, if persistent can quickly impact negatively on their quality of life. A convex stoma appliance, also termed convexity, is a possible solution to a problematic stoma. However, the use of a convex appliance should be considered only after a thorough assessment has been undertaken by a specialist SCN. Professionally, stoma care nursing has advanced greatly in recent years and there has been a realisation that there is a need for clinical guidelines to direct practice and offer a process for the novice SCN to follow. This realisation has been the catalyst behind the development of the new guideline for the assessment and use of convexity by the Association of Stoma Care Nurses UK, which was published this year (https://ascnuk.com/). This article explores the concept of convexity and how the guideline can assist the practice of specialist SCNs, as well as that of ward and community-based nurses who wish to gain more information on using convexity within the specialist sphere of stoma care.

Managing Bowel Symptoms After Sphincter-Saving Rectal Cancer Surgery: A Scoping Review.

CONTEXT: Rectal cancer is common and it is often treated by surgery with or without chemoradiation. Cancer treatment frequently results in bowel symptoms. OBJECTIVES: The review aim was to chart the management options for bowel symptoms following rectal cancer surgery. METHODS: A scoping review was undertaken searching nine healthcare databases, using relevant search terms and Boolean operators following PRISMA-ScR guidance. Data were extracted into an Excel spreadsheet using headings from the United Kingdom Department of Health guidance and are reported narratively. RESULTS: 30 heterogeneous studies met the inclusion criteria, including 853 patients. The most commonly reported bowel symptom was fecal incontinence; the most frequent management strategy was sacral nerve stimulation. Most studies reported on a single management option, often used to manage more than one bowel symptom. Often failure to satisfactorily improve symptoms using options such as medication was needed prior to progressing to other management options. In some studies more than one management option was used, such as rehabilitation programmes. CONCLUSION: It is likely that to effectively manage the bowel symptoms experienced after rectal cancer treatment, more than one management option may be used-. Additionally, different management options may need to be tried concurrently.