American journal of kidney diseases : the official journal of the National Kidney Foundation · 2025
Patient and Caregiver Perspectives on Diet and Nutrition for Children With CKD: A Systematic Review of Qualitative Studies.
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Zhang Ao, van Zwieten Anita, Hughes Anastasia, Kim Siah, Lambert Kelly, Torrisi Luca G, Jaure Allison, Guha Chandana
Аннотация
RATIONALE & OBJECTIVE: Children with chronic kidney disease (CKD) and their families encounter many difficulties adjusting to diet and fluid restrictions, which can reduce adherence to dietary recommendations. This study describes the perspectives and experiences of children with CKD and their caregivers regarding dietary intake.
STUDY DESIGN: Systematic review and thematic synthesis of qualitative studies.
SETTING & PARTICIPANTS: Children and adolescents with any stage of CKD and their caregivers.
SELECTION CRITERIA FOR STUDIES: MEDLINE, Embase, PsycINFO, and CINAHL were searched from inception to July 2024. These databases were chosen because they cover biomedical, clinical, and qualitative research relevant to pediatric CKD and nutrition.
DATA EXTRACTION: All text from the results/conclusion of the primary studies.
ANALYTICAL APPROACH: Thematic synthesis.
RESULTS: We included 70 studies involving 1,941 participants from 21 countries. We identified 5 themes: (1) frustrated by unpalatable food (unfulfilled by unappetizing meals, uninterested in food due to altered perception of taste, loss of control over food choices), (2) deprived by restrictions (breaking rules out of desperation, constant craving for forbidden food, limiting life participation, parental distress and relational strain from enforcing dietary restrictions), (3) compounding the burden of caregiving and clinical management (overwhelmed by food preparation and dietary demands, financial cost of adhering to special dietary needs), (4) agency in dietary decision making (strengthening nutritional literacy, autonomy in decision making about diet, regaining dietary freedom after transplant), and (5) controlling diet for health (motivated to stay well, instilling coping strategies for dietary adherence).
LIMITATIONS: Several included studies did not specify patients' CKD stages.
CONCLUSIONS: Children with CKD face dietary challenges leading to frustration, cravings, and occasional dietary nonadherence. These restrictions impact social interactions and daily routines. Strategies that improve nutrition literacy may enhance self-efficacy and social connectedness and facilitate better adherence to dietary recommendations.
PLAIN-LANGUAGE SUMMARY: Children with chronic kidney disease (CKD) face significant challenges in following dietary and fluid restrictions, which often affect their daily lives and social interactions. This study examines how children with CKD and their caregivers feel about these restrictions. We reviewed 70 studies to gather the perspectives of patients and caregivers on their dietary experiences. We found that many children felt frustrated by bland foods, and their caregivers often struggled with enforcing recommended diets. Despite these difficulties, both patients and caregivers developed coping strategies such as seeking advice from dietitians and supporting each other. This research highlights the importance of improving nutritional support and emotional well-being to help families manage their children's CKD.
STUDY DESIGN: Systematic review and thematic synthesis of qualitative studies.
SETTING & PARTICIPANTS: Children and adolescents with any stage of CKD and their caregivers.
SELECTION CRITERIA FOR STUDIES: MEDLINE, Embase, PsycINFO, and CINAHL were searched from inception to July 2024. These databases were chosen because they cover biomedical, clinical, and qualitative research relevant to pediatric CKD and nutrition.
DATA EXTRACTION: All text from the results/conclusion of the primary studies.
ANALYTICAL APPROACH: Thematic synthesis.
RESULTS: We included 70 studies involving 1,941 participants from 21 countries. We identified 5 themes: (1) frustrated by unpalatable food (unfulfilled by unappetizing meals, uninterested in food due to altered perception of taste, loss of control over food choices), (2) deprived by restrictions (breaking rules out of desperation, constant craving for forbidden food, limiting life participation, parental distress and relational strain from enforcing dietary restrictions), (3) compounding the burden of caregiving and clinical management (overwhelmed by food preparation and dietary demands, financial cost of adhering to special dietary needs), (4) agency in dietary decision making (strengthening nutritional literacy, autonomy in decision making about diet, regaining dietary freedom after transplant), and (5) controlling diet for health (motivated to stay well, instilling coping strategies for dietary adherence).
LIMITATIONS: Several included studies did not specify patients' CKD stages.
CONCLUSIONS: Children with CKD face dietary challenges leading to frustration, cravings, and occasional dietary nonadherence. These restrictions impact social interactions and daily routines. Strategies that improve nutrition literacy may enhance self-efficacy and social connectedness and facilitate better adherence to dietary recommendations.
PLAIN-LANGUAGE SUMMARY: Children with chronic kidney disease (CKD) face significant challenges in following dietary and fluid restrictions, which often affect their daily lives and social interactions. This study examines how children with CKD and their caregivers feel about these restrictions. We reviewed 70 studies to gather the perspectives of patients and caregivers on their dietary experiences. We found that many children felt frustrated by bland foods, and their caregivers often struggled with enforcing recommended diets. Despite these difficulties, both patients and caregivers developed coping strategies such as seeking advice from dietitians and supporting each other. This research highlights the importance of improving nutritional support and emotional well-being to help families manage their children's CKD.