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A Retrospective Study of Mothers’ Perspectives of the Lived Experience of Anticipatory Loss of a Child From a Terminal Brain Tumor

Lou, Hsiao-Ling MS; Mu, Pei-Fan PhD, RN; Wong, Tai-Tong MD; Mao, Hsin-Chun MS

doi: 10.1097/NCC.0000000000000178
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Background: The family of a child with an advanced brain tumor may undergo serious physical and psychological impacts as the child’s conditions worsen. It is important for health professionals to understand the mother’s experiences when facing a child with cancer recurrence or who is dying.

Objective: A retrospective study using Husserl’s phenomenological approach was used to explore the essence of the maternal experiences related to the anticipatory loss of families of a child with advanced cancer.

Methods: Data were collected through in-depth face-to-face interviews. Colaizzi’s method for analyzing phenomenological data was used to elicit an invariant description of the interviews’ meaning.

Results: Ten mothers were enrolled in this study. Five themes emerged: (1) losing hope of a cure, (2) encountering death, (3) establishing a protective role toward the child, (4) the intertwining chaos and strengths of family life, and (5) contending against death.

Conclusions: These findings represent the experiences of mothers when facing the impending loss of a child and involve the dynamic relationships between the parents’ belief concerning death, the parent-child relationship, the empowerment of family resilience, and maintaining the child’s dignity.

Implications for Practice: Nursing and medical staff need to develop a better understanding of each child’s and each family’s belief systems with respect to treatment, their relationship, and their experience of being on the divide between hope and death, while at the same time caring for the family who is facing the anticipatory loss of a child with advanced cancer.

Author Affiliations: Taipei Veteran General Hospital (Mrs Lou); Institute of Clinical and Community Health Nursing, National Yang-Ming University (Dr Mu); Department of Surgery, Cheng Hsin General Hospital, and Faculty of Medicine, National Yang-Ming University (Dr Wong); and Health Science and Management, Chung Jen College of Nursing (Mrs Mao), Taipei, Taiwan, Republic of China.

The authors have no funding or conflicts of interest to disclose.

Correspondence: Pei-Fan Mu, PhD, RN, Institute of Clinical and Community Health Nursing, National Yang-Ming University, #155, Sec. 2, Li-Nong St, Taipei, Taiwan, Republic of China (peifan@ym.edu.tw).

Accepted for publication May 26, 2014.

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