Quality of self-report coping measures for children and adolescents with cancer: A systematic review.

BACKGROUND: Cancer and its treatments cause significant stress in children and adolescents. This stress is associated with risks of emotional and behavioral problem development and interfering with adherence to treatment regimens. Instruments enabling the precise evaluation of the coping behaviors of pediatric patients with cancer in clinical practice are needed. AIMS: The study aimed to identify existing self-report measures of pediatric coping patterns and to evaluate their psychometric properties, to aid the selection of tools for application to pediatric patients with cancer. METHODS: This systematic review was conducted according to the PRISMA statement and registered in PROSPERO (CRD 42021279441). Nine international databases were searched from their inception to September 2021. Studies with the main goal of developing and psychometrically validating pediatric coping measures with populations aged <20 years, not specific to any disease or situation, and published in English, Mandarin, or Indonesian were included. The Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) checklist was applied. RESULTS: Of 2527 studies initially identified, 12 met the inclusion criteria. Five scales had positive internal consistency ratings and adequate reliability (α > .7). Construct validity ratings were positive for five scales (41.6%), intermediate for three (25%), and poor for three (25%). No information was available for one (8.3%) scale. The Coping Scale for Children and Youth (CSCY) and Pediatric Cancer Coping Scale (PCCS) had the largest numbers of positive ratings. Only the PCCS was developed for pediatric patients with cancer and showed acceptable reliability and validity. LINKING EVIDENCE TO ACTION: The findings of this review highlight the need to increase the validation of existing coping measures in clinical and research settings. Some instruments seem to be specific to adolescent's cancer coping assessment and knowledge of these validity and reliability of the instruments may improve the quality of clinical interventions.

The journey of embracing life: Mothers' perspectives of living with their children with retinoblastoma.

PURPOSE: This study aimed to explore the experience and views of mothers with children who have been diagnosed with retinoblastoma. DESIGN AND METHODS: A descriptive qualitative study was conducted in the period of 2019-2021. Interviews were conducted with 21 mothers of children diagnosed with retinoblastoma in Indonesia. Data were collected by semi-structured interviews and examined by content analysis. RESULTS: Mothers evolved from a sense of unacceptability to accepting challenges and gaining inner strength. Three themes were identified: 1) physical and psychological suffering, 2) awareness of changes and demands, and 3) keep moving forward. Mothers developed positive adaptive mechanisms for coping with the problems associated with having a child with retinoblastoma. Psychological adjustment and religious beliefs were key elements in their journeys toward embracing life in the moment. CONCLUSION: Findings illuminated psychological adaptation and coping strategies of mothers with seriously ill children and highlighted how difficulties and cultural norms shaped the adaptative process. Religion and health beliefs played varied and important roles in helping mothers to manage their stress and enhance their coping strategies. PRACTICE IMPLICATIONS: Our findings revealed that it is important to routinely assess social support, traditional health beliefs, and spirituality on mothers, facilitate mentoring to help mothers find their inner strengths, and develop intervention programs designed to promote psychological adjustment without delaying treatment.