Parental expectations at the time of childhood cancer diagnosis: Development and pilot testing of a structured assessment tool in India.

BACKGROUND

Parents of children newly diagnosed with cancer develop expectations about treatment, support, and financial challenges, influencing coping and communication. Validated tools to measure these expectations in low- and middle-income settings are limited.

METHODS

This cross-sectional pilot study was conducted in a pediatric oncology center in India. A 20-item, expert-validated questionnaire covering five domains-Treatment and Prognosis, Facility Support, Financial Support, Psychosocial Support, and Spiritual Support-was administered to 30 parents of children under 14 years at diagnosis. Items were rated on a 4-point Likert scale (1 = Unlikely, 2 = Less likely, 3 = Likely, 4 = More likely), with higher mean scores indicating more positive expectations. Descriptive statistics and nonparametric tests were used for analysis.

RESULTS

Overall expectations were high, with a mean score of 3.55 ± 0.21 on a 1-4 scale, indicating responses clustered between "Likely" and "More likely." Facility Support (3.73 ± 0.27) and Treatment and Prognosis (3.64 ± 0.21) scored highest; Financial Support scored lowest (3.16 ± 0.40). Higher education (p = 0.022) and socioeconomic class (p < 0.05) predicted higher expectations. Younger child age correlated with psychosocial expectations (ρ = -0.68, p < 0.001).

CONCLUSION

The tool demonstrated good feasibility and contextual relevance in this pilot study and may guide targeted psychosocial and financial support.