Parental coping with retinoblastoma diagnosis

Abstract

Objective: To characterize coping and distress among parents of children with retinoblastoma, and to uncover their association with perceived health literacy, self-efficacy, and social support.

Methods: This was a cross-sectional study performed in the retinoblastoma clinics of Beijing Children’s Hospital, Jilin Eye Hospital and Changchun Hospital in China. Parents of children with retinoblastoma (n = 104) completed a print Mandarin language questionnaire consisting of four sections: (i) demographic information, (ii) mini-mental adjustment to cancer scale, (iii) hospital anxiety and depression scale, and (iv) perceived health literacy, self-efficacy, and social support scales. Scores were tabulated for each measure and analyzed by bivariate correlation.

Results: Moderate anxiety affected 59.2% of parents, and 77.7% experienced low, moderate, or high levels of depression. Combined anxiety and depression was positively correlated with helplessness/hopelessness (R = 0.42, p < .01) and anxious preoccupation (R = 0.247, p < .05), and negatively correlated with perceived self-efficacy (R = –0.228, p < .05). Perceived social support from a partner was negatively correlated with depression (R = –0.207, p < .05) and helplessness/hopelessness (R = –0.271, p < .01).

Conclusions: Knowledge of how parents cope with their child’s cancer diagnosis can help healthcare teams understand how best to support their psychosocial needs.

Keywords:

• Retinoblastoma
• parental coping
• HADS
• childhood cancer
• China

Acknowledgments

We acknowledge World Eye Cancer Hope for providing the suggestion for our study purpose, and for the perspective of retinoblastoma patients. We acknowledge Dr. Alison Gibbs and her team at the University of Toronto for providing support with the statistical analysis.

Additional information

Funding

Maxwell J. Gelkopf was supported by a Lunenfeld Summer Studentship within the SickKids Summer Research Program. Trillium Chang was supported by a University of Toronto International Health Program (UTIHP) Discovery Fund grant.