Gaining consensus: the challenges of living with a stoma and the impact of stoma leakage

Aibibula, Miriayi; Burry, Gill; Gagen, Hannah; Osborne, Wendy; Lewis, H; Bramwell, Caroline; Pixley, Hazel; Cinque, Giovanni

doi:10.12968/bjon.2022.31.6.s30

Cited by 13 publications

(6 citation statements)

References 27 publications

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“…Some of the delays in access to support for parastomal bulging were attributed by participants to the COVID-19 pandemic which impacted all NHS services and NHS staff [ 27 ]. Nonetheless, delays occurred before, during, and after the pandemic and this study adds further weight to a recent United Kingdom Delphi study that reached consensus on the need for improved information for people with a stoma and concluded that access to specialist support should be equitable and consistent across the country [ 28 ]. Moreover, the study highlights that peer support, while welcome, is no substitute for high quality support and information from stoma care specialists.…”

Section: Discussionmentioning

confidence: 90%

Lived Experience of Parastomal Bulging: A Mixed Methods Study

Munro,

Hubbard,

Goodman

et al. 2024

J. Abdom. Wall Surg.

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Aim:This United Kingdom study aimed to explore people’s experiences of living with, and self-managing parastomal bulging.Methods:Seventeen people were interviewed and 61 people completed an online survey.Results:Parastomal bulging has a detrimental impact on quality of life including a negative impact on stoma function, daily activities, body image, physical intimacy, and socialising; access to specialist information and support for addressing the problem of bulging was inequitable; support garments were the most common self-management intervention; there was confusion about what exercise would be beneficial or how being active would help in terms of parastomal bulging self-management; peer support is no substitute for high quality specialist support.Conclusion:People need equitable access to information and support to self-manage and treat parastomal bulging. Research about other types of self-management interventions, for example, exercise is required so that people do not have to rely solely on support garments to self-manage parastomal bulging.

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Section: Discussionmentioning

confidence: 90%

Lived Experience of Parastomal Bulging: A Mixed Methods Study

Munro,

Hubbard,

Goodman

et al. 2024

J. Abdom. Wall Surg.

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“…While the emphasis on addressing the emotional and psychological aspects of stoma management is common with our findings, concern about the stoma bag leaking was not an issue raised by our participants. Also, several of the priority areas that reached consensus in our study were not identified by Aibibula et al 29 This included ‘information about fertility and pregnancy related to stoma surgery’. Some female participants reported concerns they had felt following surgery that they may have decreased fertility, which may reflect a priority that is specific to younger people with a stoma, and perhaps younger women in particular.…”

Section: Discussionmentioning

confidence: 93%

“…Comparisons can also be made with research on more generalised age groups. A recent UK‐based Delphi study by Aibibula et al 29 aimed to reach consensus on the difficulties faced by people with a stoma, aged 26–75, particularly focusing on stoma bag leaks. Through this, a ‘Call to Action’ was developed to improve stoma care in clinical settings, which included: delivery of individualised and holistic stoma care, access to mental health support, and an annual review that includes mental health, skin health and product choice.…”

Section: Discussionmentioning

confidence: 99%

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Young people's priorities for the self‐management of distress after stoma surgery due to inflammatory bowel disease: A consensus study using online nominal group technique

Saunders,

Polidano,

Bray

et al. 2024

Health Expectations

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IntroductionThe aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self‐management of stoma‐related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources.MethodsTwo consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self‐management intervention.ResultsNineteen young people, aged 19–33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty‐nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7‐point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma ‘hacks’, for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey.ConclusionsFindings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self‐management resource for young people with an IBD stoma and have relevance for the clinical management of stoma‐related distress in this population.Patient or Public ContributionThree patient contributors are co‐authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2‐h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self‐manage distress related to stoma surgery.

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“…Where there is persistent loss of large amounts of small bowel fluid (1500–2000 mL/24 h), dehydration and electrolyte disorders can arise and are a common factor in the readmission of patients with an ileostomy [ 6 – 9 ]. High output stomas (HOS) can also greatly increase the propensity towards pouch leakage [ 10 , 11 ] and peristomal skin complications [ 12 ]. Moisture associated skin damage through prolonged exposure to the bowel fluid can be particularly troublesome for patients as it can directly impact on the subsequent adhesion of the collection pouch to the skin [ 13 ].…”

Section: Introductionmentioning

confidence: 99%

Moving towards in pouch diagnostics for ostomy patients: exploiting the versatility of laser induced graphene sensors

McCann,

Gilpin,

Scott

et al. 2023

J Mater Sci

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The development of a 3D printed sensor for direct incorporation within stoma pouches is described. Laser induced graphene scribed on either side of polyimide film served as the basis of a 2 electrode configuration that could be integrated within a disposable pouch sensor for the periodic monitoring of ileostomy fluid pH. The graphene sensors were characterised using electron microscopy, Raman spectroscopy, DekTak profilometry with the electrochemical properties investigated using both cyclic and square wave voltammetry. Adsorbed riboflavin was employed as a biocompatible redox probe for the voltammetric measurement of pH. The variation in peak position with pH was found to be linear over pH 3–8 with a sub Nernstian response (43 mV/pH). The adsorbed probe was found to be reversible and exhibited minimal leaching through repeated scanning. The performance of the system was assessed in a heterogeneous bacterial fermentation mixture simulating ileostomy fluid with the pH recorded before and after 96 h incubation. The peak profile in the bacterial medium provided an unambiguous signal free from interference with the calculated pH before and after incubation (pH 5.3 to 3.66) in good agreement with that obtained with commercial pH probes. Graphical abstract

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Gaining consensus: the challenges of living with a stoma and the impact of stoma leakage

Cited by 13 publications

References 27 publications

Lived Experience of Parastomal Bulging: A Mixed Methods Study

Lived Experience of Parastomal Bulging: A Mixed Methods Study

Young people's priorities for the self‐management of distress after stoma surgery due to inflammatory bowel disease: A consensus study using online nominal group technique

Moving towards in pouch diagnostics for ostomy patients: exploiting the versatility of laser induced graphene sensors

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