Cancer support camps and the measurement of quality of life among children of parents with cancer.
Children of parents with cancer face elevated risks of anxiety, depression, and impaired social-emotional functioning. Cancer support camps may mitigate these psychosocial challenges by fostering connection, resilience, and expression. However, no validated tools exist to measure quality of life outcomes specific to this context. This study aimed to develop and evaluate the Kids' Experience of Summer Enrichment Measure (KESEM), a parent-report tool assessing psychosocial well-being among children attending a cancer support camp due to a parent's cancer.
A secondary analysis of survey data collected from 2021 to 2024 by a national non-profit providing free, week-long summer camps to children (aged 6-18) affected by parental cancer was conducted. The KESEM, a new 12-item measure embedded in post-camp evaluations, was examined using principal components factor analysis and internal consistency reliability testing: convergent validity was assessed as well.
Responses from N = 1802 parents and N = 184 children were studied. Analysis revealed a two-factor structure: (i) Well-being and Belonging (α = 0.93) and (ii) Empowerment (α = 0.92)-accounting for 67.2% of the measure's variance. The total scale demonstrated high internal consistency (α = 0.94). In subgroup analysis, parent and child scores supported convergent validity of parental reporting on children's quality of life, and were not influenced by child age: F (1, 168) = 0.03, p = 0.87. Concordantly, the majority of parents (78%) strongly agreed that camp was favorably impactful and would recommend it to others.
The KESEM is a promising parent-reported assessment tool for measuring quality of life outcomes in children attending cancer support camps. Such camps may offer meaningful psychosocial benefits to children coping with parental cancer.
A secondary analysis of survey data collected from 2021 to 2024 by a national non-profit providing free, week-long summer camps to children (aged 6-18) affected by parental cancer was conducted. The KESEM, a new 12-item measure embedded in post-camp evaluations, was examined using principal components factor analysis and internal consistency reliability testing: convergent validity was assessed as well.
Responses from N = 1802 parents and N = 184 children were studied. Analysis revealed a two-factor structure: (i) Well-being and Belonging (α = 0.93) and (ii) Empowerment (α = 0.92)-accounting for 67.2% of the measure's variance. The total scale demonstrated high internal consistency (α = 0.94). In subgroup analysis, parent and child scores supported convergent validity of parental reporting on children's quality of life, and were not influenced by child age: F (1, 168) = 0.03, p = 0.87. Concordantly, the majority of parents (78%) strongly agreed that camp was favorably impactful and would recommend it to others.
The KESEM is a promising parent-reported assessment tool for measuring quality of life outcomes in children attending cancer support camps. Such camps may offer meaningful psychosocial benefits to children coping with parental cancer.
Authors
Price Price, Sleiman Sleiman, Statman Statman, Liu Liu, Adams Adams, Biel Biel, Baldwin Baldwin, Stilwell Stilwell, Tercyak Tercyak
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