SToma cARe For Improvement reSearcH (STARFISH): Epidemiologic study of stoma cases in Lower- and Middle-Income Countries and qualitative research on the challenges of stoma care

The reasoning behind the STARFSIH study

The STARFISH study was proposed in 2019 by Dr Carmela (Mela) Lapitan, who heads our NIHR GSU Centre in The Philippines.

Mela says even though there has been immense research done into stoma care in high income countries with patients now being well supported and top notch appliances being provided, there is little research into practical problems, as well as feasible and affordable solutions in low resource settings. Her NIHR-funded STARFISH study therefore sets out to assess the burden and experience of stoma surgery and the challenges of stoma care in LIMCs with the aim to capture patients’ biggest challenges, particularly on access to and availability of stoma appliances, and to generate information and develop methods to encourage further research.

The NIHR Research Centre Lead in The Philippines, Dr Carmela Lapitan, in conversation with UK-based surgeon and PhD fellow, James Glasbey, and CEI Manager, Dr Karolin Kroese.

Patients doing research vs. patients being researched

As outlined in the ‘Background’ video, the study is heavily patient-centered with a major aspect of it being focus groups and one-to-one interviews with stoma patients, informal caregivers, health care providers and staff involved in stoma care services to gather information on experiences, priorities, challenges and coping strategies relating to stoma care. Mela therefore felt it was crucial to involve patients in the design of the study to help highlight barriers to participation and inform the smooth running of focus groups and interviews. Patients being part of the research team: A new concept in The Philippines that turned out to have its challenges and obstacles.

In the next video, Mela outlines the why, how and what of patient involvement with STARFISH.

Mela experienced the ‘challenge of engaging a patient as part of the research team because of very poor awareness on research and their potential contribution to such beyond being a participant.’ – Something that the Global Surgery Unit encounters in other LMICs, as well. Is this highlighting the need for more health education?

Take Home Messages

Mela’s Top Tipps

  • If possible, learn from other’s experience and utilise their expertise,
    E.g. for STARFISH: Early engagement of a social scientist with links into communities in the conceptualisation and design of the study

  • Make sure that involved patients or community members represent people relevant to your study, preferably with lived experience

  • If possible, engage with patient groups. This will not only help inform and shape the study, but also help with recruitment of participants later on