Table 6.
CERQual summary of qualitative findings
| Summary of review finding | Contributing studiesa | Confidence assessment | Explanation of confidence assessment against CERQual criteria |
|---|---|---|---|
| Theme 1. Living with ongoing risk | |||
| Finding 1. Despite maintaining a gluten-free diet, adults were anxious about the health risks associated with coeliac disease, such as increased risk or other health conditions, bodily damage caused in the pre-diagnosis period, and genetic risk to descendants | 12 (1, 2,3, 4, 7, 9, 10,11, 12, 14, 15,17) | High confidence | No concerns about coherence or relevance. No/ minor concerns about adequacy. Moderate methodological concerns in the majority of studies (reflexivity). A serious methodological concern in one study (trustworthiness). Overall, a fairly large body of evidence offering a rich dataset that supports the finding |
| Finding 2. Participants distrusted health professionals, who they felt lacked knowledge and empathy about coeliac disease. Participants expressed reluctance to seek support from health professionals post-diagnosis. Instead, self-diagnoses and alternative support sources (e.g. complementary therapies) were often sought | Six (2,4,6,9,10,12) | Moderate confidence | Moderate concerns about adequacy (fairly thin data) in three studies. A relatively small overall body of evidence (six studies). Moderate methodological limitations (reflexivity) in four studies. These limitations reduced confidence in the finding |
| Finding 3. Fears of accidental gluten ingestion due to cross-contamination are increased in social situations where others provide or prepare food, and may serve or prepare food inappropriately, may misread or misunderstand food labels, or forget to take precautions against cross-contamination | 15 (1,2,3,4, 6,7, 9,10, 11,12, 13,14, 15, 16,17) | High confidence | No concerns about relevance or coherence. Very minor concerns about adequacy. Moderate methodological limitations in eleven studies (reflexivity). A serious methodological concern in one study (trustworthiness). Overall, a large and methodologically strong body of evidence provides substantial support for the finding |
| Theme 2. Losing more than gluten | |||
| Finding 4. Many participants described experiencing low moods, feelings of depression or grief following their diagnosis. These feelings are often related to a sense of having lost more than gluten because of coeliac disease, such as lost pleasure, choice, health or time., | 10 (2,3,4, 6, 9, 10, 12, 15, 16,17) | High confidence | No concerns about relevance or coherence. Minor concerns about adequacy. Moderate methodological limitations in seven studies (reflexivity). Overall, a methodologically strong body of evidence provides substantial support for the finding |
| Finding 5. Some participants experienced bouts of anger, irritability, or resentment about their diagnosis of coeliac disease, and this often related to the perceived inadequacy and negative impact of the gluten-free diet | Seven (4, 11, 12, 14, 15, 16, 17) | Moderate confidence | Moderate concerns about adequacy (data fairly thin) in four studies. A relatively small body of evidence. Moderate methodological limitations (reflexivity) in all studies. A serious methodological concern in one study (trustworthiness). These limitations reduce confidence in the finding |
| Theme 3. A changed identity | |||
| Finding 6. Adults reconstruct their personal history to some extent following their diagnosis of coeliac disease. For some people, their personal identity became focused on physical illness or damage, while others maintained a neutral or positive sense of personal identity | Six (2,3,9, 10, 12,17) | Moderate confidence | Moderate concerns about adequacy (data fairly thin) in two studies. Moderate methodological limitations (reflexivity) in five studies. A small body of evidence, Limitations reduce confidence in the finding |
| Finding 7. Participants felt that diagnosis of coeliac disease conferred a minority status as they now behaved differently around food to other people. Studies showed coeliac disease to be a stigmatising condition | 13 (1,2,3,4,5,6, 7 8,11,12, 15, 16, 17) | High confidence | No concerns about relevance. Very minor concerns about adequacy. Very minor concern about coherence in one study (fit between data from the primary study and review finding). Moderate methodological limitations in nine studies (reflexivity). Serious methodological concern in one study (trustworthiness). Overall, a large and methodologically strong body of evidence provides substantial support for the finding |
| Theme 4. A changed relationship with food | |||
| Finding 8. Participants experienced substantially changed attitudes and behaviours related to food following their diagnosis of coeliac disease. Changes included preoccupation with food, perceiving all foods to be risky, adopting additional dietary exclusions, only eating foods prepared themselves, and avoiding new foods | 10 (1,2,4,6, 12,13, 14,15, 16,17) | High confidence | No concerns about relevance or coherence. Very minor concerns about adequacy. Moderate methodological limitations in eight studies (reflexivity). A serious methodological concern in one study (trustworthiness). Overall, a fairly large and methodologically strong body of evidence substantially supports the finding |
| Finding 9. Participants sometimes engaged in disordered eating patterns or risky behaviours to alleviate the boredom or feelings of deprivation created by the gluten-free diet. These behaviours included cheating on the diet, binge-eating, hoarding food, and ‘feast-famine’ eating patterns) | Four (2,12,14, 16) | Moderate confidence | No concerns about relevance or coherence Moderate concerns about adequacy (data fairly thin). Moderate methodological limitations in all studies regarding reflexivity. Overall, a relatively small body of evidence reduces confidence in the finding |
| Theme 5. The gluten-free diet creates a multifaceted burden | |||
| Finding 10. The dataset demonstrated that coeliac disease creates a practical illness burden for those self-managing the condition. This is because a strict gluten-free diet entails substantial everyday tasks and pre-planning (e.g. food preparation, sourcing and researching foods, cooking, shopping) | Eight (1,2,3,6, 7,12, 15, 16) | High confidence | No concerns about relevance or coherence. Very minor concerns about adequacy. Moderate methodological limitations in five studies (reflexivity). A serious methodological concern in one study (trustworthiness). Overall, a methodologically strong body of evidence supports the finding |
| Finding 11. Findings described a substantial economic burden created by the gluten-free diet. This is due to the generally higher costs of gluten-free items, limited restaurant meal choices, and limited availability of gluten-free products in stores | Six (1,2,6,8,15,16) | Moderate confidence | No concerns about relevance. Very minor concern about coherence in one study (fit between data from only one primary study and review finding). Minor concern about adequacy (thin data in two studies). Moderate methodological limitations in four studies (reflexivity). A serious methodological concern in one study (trustworthiness). Overall, a relatively small body of evidence (six studies). Themes limitations reduce confidence in the finding |
| Finding 12. People living with coeliac disease experience illness-related social burdens. This is due to several factors, including the repeated need to disclose their condition, to educate others about coeliac disease, to correct social ignorance and misunderstandings about the condition and the gluten-free diet, and the need to maintain vigilance over others’ behaviour around food | 12 (1,2,3,4,5,6,7,12,13 15,16,17) | High confidence | No concerns about relevance or coherence. Moderate concerns about adequacy (relatively thin data in two studies). Moderate methodological limitations regarding reflexivity (eight studies) and sampling (one study)). A serious methodological concern in one study (trustworthiness). Overall, a large and methodologically strong body of evidence supports the finding |
| Finding 13. Participants described the burden of managing co-morbid conditions and ongoing physical symptoms alongside self-management of their gluten-free diet | Four (4, 7, 12, 15) | Moderate confidence | No concerns about relevance or coherence. Moderate concerns about adequacy (relatively thin data in 3 studies). Moderate methodological limitations (reflexivity) in all. A serious methodological concern in one study (trustworthiness). A relatively small body of evidence. These limitations reduce confidence in the finding |
| Finding 14. Studies show that people living with coeliac disease experience having to shoulder the burden of their condition alone, creating illness-related experiences of being isolated and overwhelmed by their condition | Six (1,2,3,4, 11,12) | Moderate confidence | No concerns about relevance or coherence. Moderate concerns about adequacy (relatively thin data in two studies). Moderate methodological limitations regarding reflexivity (four studies). Serious methodological limitations in one study (trustworthiness). A relatively small body of evidence. Limitations reduce confidence in the finding |
| Finding 15. Participants experienced positive impacts from social and professional support in managing coeliac disease. This included support with cooking meals, dietary guidance from health professionals, and receiving regular health checks | Eight (1, 2, 3, 6, 7, 9, 12, 17) | Moderate confidence | No concerns about relevance or coherence. Moderate concerns about adequacy (relatively thin data in four studies). Moderate methodological limitations regarding reflexivity (four studies). Serious methodological limitations in one study (trustworthiness). A relatively small body of evidence. Limitations reduce confidence |
| Theme 6. Learning how to live well with coeliac disease | |||
| Finding 16. Studies described adults becoming confident in their ability to learn about the gluten-free diet and self-manage their condition. This confidence is often described as having increased with time and practice | 10 (1,2,3,4, 6,9, 11,12, 14, 17) | High confidence | No concerns about relevance or coherence. Minor concern about adequacy (relatively thin data in five studies). Moderate methodological limitations in six studies (reflexivity). A serious methodological concern in one study (trustworthiness). Overall, a substantial and methodologically strong body of evidence supports the finding |
| Finding 17. Participants found that developing an attitude of acceptance towards coeliac disease and the gluten-free diet supported their adaptation to the condition. Acceptance often develops over time | Nine (2,3,4,5,6,9,12,14,17) | High confidence | No concerns about relevance or coherence. Minor concern about adequacy (relatively thin data in five studies). Moderate methodological limitations in five studies (reflexivity). Overall, a substantial and methodologically strong body of evidence supports the finding |
Overarching themes: (1) Living with ongoing risk; (2) Losing more than gluten; (3) A changed identity; (4) A changed relationship with food; (5) The gluten-free diet as a multifaceted burden; (6) Learning how to live well with Coeliac Disease
aStudies: (1) Garnweidner-Holme et al. [24] (2) Houbre et al. [25] (3) Jacobsson et al. [26] (4) Jacobsson et al. [27] (5) King et al. [28] (6) Lee et al. [29] (7) Leffler et al. [30] (8) Peters et al. [31] (9) Price & Howard [32] (10) Ring Jacobsson et al. [33] (11) Rodriguez Almagro et al. [34] (12) Rose & Howard [35] (13) Satherley et al. [36] (14) Satherley et al. [37] (15) Sverker et al. [38] (16) Sverker et al. [39] (17) Taylor et al. [40]