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Caregiver perceptions of child heath behaviors and weight during treatment for acute lymphoblastic leukemia
Meghan Tokala1, Jacee Weber2, Renee Gilbert1
1University of Kansas Medical Center, Kansas City, Kansas, USA.
Insights
Caregivers prioritize preventing malnutrition in children with acute lymphoblastic leukemia (ALL), often encouraging calorie-dense foods and viewing weight gain as protective. They noted children were less active due to treatment pain.
Area of Science:
- Pediatric Oncology
- Child Health Behavior
- Qualitative Research
Background:
- Health behaviors and weight changes are common in pediatric acute lymphoblastic leukemia (ALL) treatment, potentially affecting tolerability.
- Caregivers are crucial in guiding children's health behaviors during ALL treatment.
- This study qualitatively explores caregiver perceptions during early ALL treatment phases.
Purpose of the Study:
- To analyze caregiver perspectives on pediatric health behaviors (nutrition, activity, sedentary time, weight) during early acute lymphoblastic leukemia (ALL) treatment.
- To understand caregiver concerns and strategies related to child weight and health behaviors during ALL therapy.
Main Methods:
- Semi-structured interviews were conducted with 17 caregivers of children undergoing early ALL treatment (average 8.7 months post-diagnosis).
- Thematic analysis, following Braun and Clark's framework, was used to identify key themes.
- Inter-coder reliability was established (alpha = .88) using a multi-pass coding system.
Main Results:
- Caregivers prioritized preventing malnutrition, viewing weight gain as protective and encouraging calorie-dense foods.
- Concerns about decreased physical activity due to treatment-related pain were reported.
- Health behaviors were perceived as child-directed rather than parent- or provider-directed.
Conclusions:
- Future interventions should focus on joint parent-child decision-making and caregiver education regarding excessive weight gain risks.
- Interventions should provide anticipatory guidance and skill-building support for caregivers to promote healthy behaviors during ALL treatment.
Background:
Changes in health behaviors and weight are common during the early phases of pediatric acute lymphoblastic leukemia treatment, and may negatively impact treatment tolerability. Given that ALL is most prevalent in children, caregivers play an essential role in shaping health behaviors during treatment. This study presents a qualitative analysis of semi-structured interviews with caregivers of youth in the early phases of ALL treatment.
Procedure:
Caregivers (N = 17, 95% female) of a child (M age = 6.76 years) diagnosed with ALL and on treatment for less than 1 year (M = 8.7 months since diagnosis) completed a semi-structured interview about perceptions of their child's nutrition, physical activity, sedentary time, and weight during ALL treatment. Thematic analysis followed Braun and Clark's six-step framework (2006). Two coders established reliability (alpha = .88) and used a multi-pass coding system to extract themes.
Results:
Caregivers' concerns around their child's weight during ALL treatment primarily centered around avoiding malnutrition. Weight gain during treatment was less of a concern and often viewed as protective. Caregivers reported encouraging their child to eat palatable, calorie-dense foods to mitigate risk for weight loss. Caregivers also expressed concern that children were less active and more sedentary due to treatment-related pain. Caregivers discussed health behaviors during treatment as being child-directed, rather than parent- or provider-directed.
Conclusion:
Future interventions may consider strategies to engage in joint parent-child decisions and caregiver education around risks of excessive weight gain during treatment. Interventions should include anticipatory guidance and aim to support parents in developing skills to support their child's health behaviors during treatment.
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