The experiences of families living with the anticipatory loss of a school-age child with spinal muscular atrophy – the parents’ perspectives

Aims and objectives To probe into parents’ anticipatory loss of school-age children with Type I or II spinal muscular atrophy. Background Spinal muscular atrophy is a rare disorder that causes death. Children die early due to either gradual atrophy or an infection of the lungs. Therefore, family members experience anticipatory loss, which causes grief before the actual loss. Family members feel physically and mentally exhausted, which results in a family crisis. Therefore, it is important to explore their experiences related to anticipatory loss to assist with the adjustment of the families to their circumstances. Design This study applied a phenomenology method and purposive sampling. Participants The 19 parents who participated in this study were referred to us by two medical centers in Taiwan. Their average age was 32–49 years. Methods Using in-depth interviews, this study explored parents’ anticipatory loss. The interviews were recorded and transcribed. Meanings were extracted using Giorgi analysis, and precision was assessed according to Guba and Lincoln, which was treated as the evaluation standard. Results Four themes were identified from the parents’ interviews. The themes included enduring the helplessness and pressure of care, suffering due to the child's rare and unknown condition, loss of hope and a reinforcement of the parent–child attachment, and avoiding the pressure of death and enriching the child's life. Conclusions The research findings help nurses identify anticipatory loss among parents of school-age children with type I or II spinal muscular atrophy. They enhance health professionals’ understanding of the panic that occurs in the society surrounding the families, family members’ dynamic relationships, and the families’ demands for care. Relevance to clinical practice In an attempt to providing intersubjective empathy and support with family having a child with type I and II SMA, nurses may recognize relevant family reactions and enhancing their hope and parent-child attachment. Encourage family members and child go beyond the pressure of death and create customized care plans meeting families’ emotional and medical needs.