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

      Highlights

      • The finding reveals how mothers from a sense of unacceptability to accept challenges and gain inner strength.
      • Awareness changes and demands, and keep moving forward can help mothers develop positive coping for caring for a child with cancer.
      • Psychological adjustment and religious beliefs are key elements in mothers' journeys toward embracing life.
      • The findings can provide guidance for assessment on mothers' coping and be useful in guiding intervention development.

      Abstract

      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.

      Keywords

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