Co-designing research with people who have a stoma- Understanding support needs that facilitate positive adjustment

Background

Stoma surgery involves creating an opening (stoma) on the abdomen to divert faeces or urine. A stoma may be required in response to inflammatory bowel diseases, cancer or abdominal trauma. This body-altering surgery is confronting and potentially stigmatising, resulting in a complex adjustment process for patients (termed ostomates), both physically and psychologically. Adjusting to a stoma is important for ostomates so that a resumption of usual interpersonal, social, employment and leisure activities can be enabled.

Evidence to date about what promotes adjustment after stoma surgery is minimal. Few studies have quantified predictors of adjustment or the effectiveness of adjustment-promoting interventions. Qualitative research is similarly scant, leaving a lack in understanding of barriers and enablers to adjustment and experiences of interventions which target adjustment support. These gaps in knowledge leave little to guide the stoma nurse seeking to provide a research-based approach to meeting their patients’ needs. A key knowledge gap relates to the role of peer support, support groups and other nurse-led adjustment-focused supports.

The aims of this PhD study were to:

1.explore the experiences of people who have a stoma (ostomates) and who attend a stoma peer support group; and

2.identify important supports that exist currently and identify gaps in support that ostomates require to facilitate adjustment.

The objective of this PhD study was to:

• inform the ongoing care of new ostomates from a person-centred perspective.

Methods

This qualitative study used the participatory approach of co-design. The emergent two-phased approach was designed so that the first phase (focus group study) would inform the second phase (patient interview study), enabling a deep understanding of the focus area. The study was underpinned by Roy’s Adaptation Theory which advances a response-based conception of adaptation.

The first phase involved three ostomate focus groups which sought to ascertain the benefits and barriers of attending a nurse-led stoma support group. The second phase (a patient interview study), built on the results yielded by Phase 1, utilised a co-design approach. Phase 1 participants were invited to be trained as co-researchers to work alongside the PhD candidate. Three participants joined as co-researchers, and the patient interview study was then undertaken together. Data from both study phases were analysed using Braun and Clarke’s six step thematic analysis approach.

Findings

Both study phases revealed previously unknown knowledge. The first phase (focus group study) shed light on the benefits of attending a nurse-led peer support group. Three themes and six sub-themes were derived, and findings suggested that ostomates benefit principally in terms of learning, support and connectedness. The second phase (patient interview study) identified key enablers and barriers to accessing peer support groups. Adjustment was found to be enhanced by the presence of a role model while physical recovery and ongoing oncology care were found to be barriers to the level of involvement ostomates had with supports. The results of both study phases highlighted the significance of the stomal therapy nurse (STN) throughout the continuum of care for ostomates beyond the initial follow-up, and for an undefined length of time afterwards.

The successful use of a co-design approach established that ostomates want to be involved in research about themselves – an important finding for future research. Co-design was understood by both consumer researchers and researchers as valuing the lived experience of the ostomate and benefiting both the researcher and the researched.

Conclusion

This research contributes to the evidence on adjustment to a stoma. Key recommendations derived from the research will guide clinicians in providing support to ostomates to promote their adjustment. The timing of the provision of adjustment-promoting interventions, such as peer support groups, needs to be considered as physical recovery from surgery and oncological commitments proved to be barriers to accessing this method of support. Collaborating with ostomates by co-designing research is important as it provides opportunities for both researchers and ostomates to learn from each other, facilitating meaningful research outcomes.

This unique study has highlighted the presence of the STN as a key adjustment-promoting factor. Group peer support via a nurse-led support group also positively influenced adjustment after stoma surgery. Stoma nurses need to access facilitation training so they can learn the skills required to facilitate support groups and embed this into their model of care. The establishment of a formalised peer support program in Australia is necessary to enable equal access for everyone having stoma surgery.