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題名 The experiences of families living with the anticipatory loss of a school-age child with spinal muscular atrophy – the parents’ perspectives 作者 汪文聖
Yang, Bao Huan
Mu, Pei Fan
Wang, Wen-Sheng貢獻者 哲學系 日期 2016-09 上傳時間 31-Aug-2017 11:39:14 (UTC+8) 摘要 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. 關聯 Journal of Clinical Nursing, 25(17-18), 2648-2657 資料類型 article DOI http://dx.doi.org/10.1111/jocn.13312 dc.contributor 哲學系 zh_TW dc.creator (作者) 汪文聖 zh_TW dc.creator (作者) Yang, Bao Huan en_US dc.creator (作者) Mu, Pei Fan en_US dc.creator (作者) Wang, Wen-Sheng en_US dc.date (日期) 2016-09 dc.date.accessioned 31-Aug-2017 11:39:14 (UTC+8) - dc.date.available 31-Aug-2017 11:39:14 (UTC+8) - dc.date.issued (上傳時間) 31-Aug-2017 11:39:14 (UTC+8) - dc.identifier.uri (URI) http://nccur.lib.nccu.edu.tw/handle/140.119/112335 - dc.description.abstract (摘要) 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. en_US dc.format.extent 104650 bytes - dc.format.mimetype application/pdf - dc.relation (關聯) Journal of Clinical Nursing, 25(17-18), 2648-2657 en_US dc.title (題名) The experiences of families living with the anticipatory loss of a school-age child with spinal muscular atrophy – the parents’ perspectives en_US dc.type (資料類型) article dc.identifier.doi (DOI) 10.1111/jocn.13312 dc.doi.uri (DOI) http://dx.doi.org/10.1111/jocn.13312
