Activities, Participation and Quality of Life Concepts in Children and Adolescents with Celiac Disease: A Scoping Review
Abstract
:1. Introduction
2. Materials and Methods
2.1. Identifying the Research Question
2.2. Identifying Relevant Studies and Study Selection
2.3. Study Selection
2.4. Charting the Data
3. Results
3.1. Study Populations
3.2. Study Objectives
3.3. Study Methods and Tools
3.4. Activities and Participation in Food-Related Activities
3.4.1. Community, Social, and Civic life
3.4.2. Major Life Areas
3.4.3. Self-Care
3.4.4. Communication
3.4.5. Domestic Life, Interpersonal Interactions, and Relationships and General Tasks and Demands
4. Discussion
5. Conclusions
Acknowledgments
Author Contributions
Conflicts of Interest
References
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Author/s | Key Words | Participants | Ages in Years | Type of Study | Constructs Measured |
---|---|---|---|---|---|
Altobelli et al., 2013 [35] | N/A | n = 140 | 10–18 | Quantitative | CD specific questions-frequency of negative feelings (e.g., feel angry, bad, embarrassed), |
Arnone and Fitzsimons, 2012 [41] | N/A | Adolescence | Review | Psychological aspects of CD | |
Bacigalupe and Plocha, 2015 [25] | adherence; CD; family rituals; GFD; social support | n = 10 (children and parents) | 6–12 | Qualitative interviews | Family challenges and strategies |
Barrio Torres et al., 2016 [26] | disease-specific questionnaire; outcome health; transcultural adaptation | n = 214 (parents only), n = 214 (parents and children), n = 52 (children only) | 10–18 | Quantitative | HRQOL |
Bellini et al., 2011 [36] | N/A | n = 156 (CD), n = 353 (healthy controls) | 6–16 | Quantitative | QOL scale (e.g., feeling embarrassed; feeling unhappy giving up some group activities due to temptation not to follow the GFD) |
Biagetti et al., 2013 [18] | QOL; CD; GFD; children; lived experiences; psycho-social aspects | N = 76 >8 years (children) <8 years (parents) | 2–18 | Qualitative open ended questions | Emotional impact of GFD on everyday life |
Biagetti et al., 2015 [27] | Child; GFD; HRQOL | n = 76 (CD); n = 143 (non-CD) | 2–18 | Quantitative | QOL; impact of GFD on social life |
Bongiovanni et al., 2010 [37] | Pediatric; sprue; QOL | n = 77 | 7–17 | Quantitative | General well-being; emotional outlook; self-perception (e.g., difficulty doing) |
Cederborg et al., 2011 [40] | adaption process; children; coeliac disease; parental perspective | n = 20 (children and parents) | 3–5; 16–17 | Qualitative interviews | Parental perspective of living with CD |
Chauhan et al., 2010 [28] | CD; GFD; compliance; QOL | n = 70 | 2–17 | Interview consisted of a self-administered questionnaire | Effect of CD on child′s feeling |
de Lorenzo et al., 2012 [29] | CD; QOL; child; parents | n = 33 (CD), n = 63 (non-CD), n = 96 (parents) | 5–12 | Quantitative | Leisure |
Jordan et al., 2013 [19] | CD; children; focus groups, GFD; HRQOL | N = 181 | 8–18 | Quantitative | HRQOL |
Lins et al., 2015 [42] | QoL; Cross-cultural adaptation; CD | n = 33 (children and parents) | 8–18 | Quantitative | HRQOL |
MacCulloch and Rashid, 2014 [30] * | Adherence; CD; compliance; GFD | n = 126 | 2–18 | Quantitative | HRQOL |
Meyer and Rosenblum, 2016 [13] * | CD; child; leisure activities; parents; QOL; self-report | n = 34 (CD), n = 34 (healthy controls) | 8–15 | Quantitative | HRQOL, Leisure |
Olsson et al., 2008 [43] | Adolescent; CD; focus groups; GFD; patient compliance | n = 57 | 15–18 | Qualitative focus groups | Views of everyday life with coeliac disease and a prescription of a GFD |
Olsson et al., 2009 [38] | Adolescent; chronic illness; focus groups; lived experiences; social constructionism; stigma | n = 57 | 15–18 | Qualitative focus groups | The GFD can produce stigma experiences in adolescence |
Pico and Spirito, 2014 [31] | QOL, children/adolescents, CD, CDDUX, sensitivity to change | n = 118 (children and parents) | 8–18 | Quantitative | HRQOL |
Roma et al., 2010 [39] | Children; CD; compliance; GFD; life style | n = 73 (self-report and parents) | 5–14.5 | Quantitative | HRQOL |
Rosén et al., 2011 [32] | N/A | n = 101 (adolescents) n = 125 (parents) | 13.9–15.4 | Qualitative interviews | |
Skjerning et al., 2014 [33] | CD; HRQOL; Children; Adolescents/youth; Coping; focus groups; illness and disease; chronic | n = 23 (children/adolescents) n = 3 (parents) | 8–18 | Qualitative focus group interviews | HRQOL |
van Doorn et al., 2008 [16] | CD; QOL; disease specific questionnaire; proxy | n = 530 | 8–18 | Quantitative | HRQOL |
Veen et al., 2012 [34] * | Discursive psychology, coeliac disease, family mealtime, discourse analysis, experience of illness | n = 7 | 2–20 | Qualitative | Conversation about the food during meals |
ICF Classification | Food-Related Activities | n |
---|---|---|
d9 Community, social, and civic life | ||
| Eating at restaurants | 8 [13,19,30,33,35,36,38,40] |
Parties/birthday parties | 7 [25,27,28,29,32,38,43] | |
Social functions/events | 7 [19,25,28,33,37,38,40] | |
Eating/dining out with friends | 6 [28,32,33,38,41,43] | |
Travelling | 4 [28,30,35,43] | |
Eating at a friend’s house | 3 [19,36,38] | |
Vacations | 2 [29,33] | |
Once each: Picnics; visiting people/family [13]; activities at friends; bringing GF food when traveling [35]; group activities [37]; meals outside the home with peers; social engagement outside the home; communal meals with peers [41]; sleep overs [25]; eating meals outside home [18]; eating GF food in public [38]; travelling abroad; bringing GF food to a meal; spontaneous social life with friends [40] | 1 | |
| Summer camp | 2 [25,43] |
Sports camp | 1 [43] | |
d8 Major life areas-education | ||
| Food situations/activities/events at school | 7 [18,25,29,35,38,39,41] |
Given gluten foods at school | 5 [13,16,26,31,42] | |
Eating at school cafeteria/canteen | 4 [27,32,38,39] | |
Meals/eating at school/daycare | 4 [30,40,43] | |
Eating with friends at school | 2 [19,29] | |
Once each: school parties; after-school activities [19]; unexpected snack in class; play games with food in class [33]; eating pastries in class [43]; home economic classes [38] | 1 | |
d5 Self-care | ||
| Not being able to eat anything/ Paying attention to what I eat/ not eating what others eat/ frustrated about not eating something you want | 6 [13,16,26,31,37,42] |
Following a lifelong diet/ following a diet for my CD/angry about having to follow a special diet | 6 [13,16,26,31,37,42] | |
thinking of gluten food | 5 [13,16,26,31,42] | |
Offered gluten food | 5 [13,16,26,31,42] | |
Having CD | 5 [13,16,26,31,42] | |
Once each: meals at home [18]; knowing what to eat; making sure there is GF food before visiting friends [40] | 1 | |
| Eating with the family | 2 [19,29] |
Having meals | 1 [29] | |
d3 Communication | ||
| Talking about CD | 5 [13,16,26,31,42] |
Explaining about CD | 5 [13,16,26,31,42] | |
Talking about CD to friends | 5 [13,16,26,31,42] | |
d6 Domestic life | ||
| Determining if food is GF or not from the food label | 2 [19,35] |
Finding GF food in stores | 1 [35] | |
d7 Interpersonal interactions and relationships | ||
| Feel teachers do not understand | 2 [28,35] |
Talking to school staff | 1 [40] | |
d2 General tasks and demands | ||
| Once each: eating at home [40]; cooking at home [43] | 1 |
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Meyer, S.; Rosenblum, S. Activities, Participation and Quality of Life Concepts in Children and Adolescents with Celiac Disease: A Scoping Review. Nutrients 2017, 9, 929. https://doi.org/10.3390/nu9090929
Meyer S, Rosenblum S. Activities, Participation and Quality of Life Concepts in Children and Adolescents with Celiac Disease: A Scoping Review. Nutrients. 2017; 9(9):929. https://doi.org/10.3390/nu9090929
Chicago/Turabian StyleMeyer, Sonya, and Sara Rosenblum. 2017. "Activities, Participation and Quality of Life Concepts in Children and Adolescents with Celiac Disease: A Scoping Review" Nutrients 9, no. 9: 929. https://doi.org/10.3390/nu9090929