Evidence map›Paper›PMID 42847446›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2026

Developing Glow: A Co-Designed Support Framework Integrating Behavioural and Psychological Needs in Coeliac Disease.

Rose-Marie Satherley, Shakira Hollyfield, Areeba Shahab, Angie Pitt, Nick Trott, Lizz Toft, Aftab Ala, Christina J Jones

Abstract read
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
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1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Rose-Marie SatherleySchool of Psychology, Department of Psychological Interventions, Faculty of Health and Medical Sciences, University of Surrey, Guildford, UK.ORCID https://orcid.org/0000-0002-7535-2292
Shakira HollyfieldSchool of Psychology, Department of Psychological Interventions, Faculty of Health and Medical Sciences, University of Surrey, Guildford, UK.ORCID https://orcid.org/0009-0008-2136-5590
Areeba ShahabSchool of Psychology, Department of Psychological Interventions, Faculty of Health and Medical Sciences, University of Surrey, Guildford, UK.
Angie PittDepartment of Psychological Medicine, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.ORCID https://orcid.org/0009-0005-7230-143X
Nick TrottAcademic Unit of Gastroenterology, Sheffield Teaching Hospitals, Sheffield, UK.ORCID https://orcid.org/0000-0001-8872-8773
Lizz ToftDepartment of Nutrition & Dietetics, Royal Surrey NHS Foundation Trust, Guildford, UK.ORCID https://orcid.org/0009-0006-6806-6796
Aftab AlaInstitute of Liver Studies, King's College Hospital, London, UK.ORCID https://orcid.org/0000-0001-6257-3160
Christina J JonesSchool of Psychology, Department of Psychological Interventions, Faculty of Health and Medical Sciences, University of Surrey, Guildford, UK.ORCID https://orcid.org/0000-0003-3672-6631

Funding

National Institute for Health and Care Research NIHR205380
6 · The paper itself

Abstract

backgroundStrict management of a gluten-free diet (GFD) is the only effective treatment for coeliac disease; support in current healthcare frameworks focususes primarily on dietary support and intestinal recovery. However, psychological and social processes that shape gluten-free living are less often addressed, despite high levels of emotional burden among people with coeliac disease. There is limited guidance on how these needs should be met in routine support.

objectiveTo co-design an evidence-informed framework integrating dietary, behavioural and psychological support for adults living with coeliac disease.

designCo-design, using iterative workshops and interviews, underpinned by a constructivist epistemology and a reflexive framework approach. The Theory of Planned Behaviour and Acceptance and Commitment Therapy were used as sensitising lenses to interpret behavioural and experiential mechanisms. SETTING AND

participantsSixty-two stakeholders in the UK, including 35 adults with coeliac disease and 27 healthcare providers. Recruitment prioritised groups under-represented in coeliac research.

resultsAnalysis produced three interpretive themes: (1) fragmented and inconsistent support landscapes shape expectations, confidence, and responsibility; (2) gluten-free living requires ongoing identity reconstruction amid misrecognition and life transitions; and (3) GFD management involves sustained cognitive, emotional and relational work, with fluctuating capacity. These informed development of the GLOW (Gluten-free Living: Optimised Wellbeing) framework, which defines three dimensions of support: Orientation and Adjustment, Sustained Support, and Specialist Psychological Input. GLOW describes support functions rather than roles, to enable delivery across healthcare, community, digital, and voluntary-sector settings.

conclusionsFor adults with coeliac disease, GFD management involves ongoing psychological work that is insufficiently addressed by current models of care. GLOW offers a mechanism-oriented approach to integrate behavioural and emotional support into routine coeliac disease services and wider support environments. Future work will evaluate implementation and resource requirements across settings. PATIENT OR PUBLIC CONTRIBUTION: People with lived experience of coeliac disease were involved throughout the study, including design, data collection, analysis, and development of the GLOW framework. Two lived experience advisors contributed as members of the Project Advisory Panel, providing input into study design, interpretation of findings, and refinement of the framework, and another as a lived experience researcher. Adults with coeliac disease also participated in co-design workshops and interviews, shaping the identification of key challenges, support needs, and proposed solutions. Wider feedback on the framework was obtained through engagement with community groups and Coeliac UK networks.

Indexed as

Celiac DiseaseDiet, Gluten-FreeSocial SupportAdultFemaleHumansMiddle AgedUnited Kingdombehaviouralcoeliac diseasedieteticpsychological

Identifiers

PMID42847446
PMCPMC13647493

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.