Health expectations : an international journal of public participation in health care and health policy · 2026
Developing Glow: A Co-Designed Support Framework Integrating Behavioural and Psychological Needs in Coeliac Disease.
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Satherley Rose-Marie, Hollyfield Shakira, Shahab Areeba, Pitt Angie, Trott Nick, Toft Lizz, Ala Aftab, Jones Christina J
Аннотация
BACKGROUND: Strict 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.
OBJECTIVE: To co-design an evidence-informed framework integrating dietary, behavioural and psychological support for adults living with coeliac disease.
DESIGN: Co-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 PARTICIPANTS: Sixty-two stakeholders in the UK, including 35 adults with coeliac disease and 27 healthcare providers. Recruitment prioritised groups under-represented in coeliac research.
RESULTS: Analysis 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.
CONCLUSIONS: For 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.
OBJECTIVE: To co-design an evidence-informed framework integrating dietary, behavioural and psychological support for adults living with coeliac disease.
DESIGN: Co-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 PARTICIPANTS: Sixty-two stakeholders in the UK, including 35 adults with coeliac disease and 27 healthcare providers. Recruitment prioritised groups under-represented in coeliac research.
RESULTS: Analysis 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.
CONCLUSIONS: For 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.