Currie Genevieve, Estefan Andrew, Caine Vera
Mount Royal University, Calgary, AB, Canada.
University of Calgary, AB, Canada.
Glob Qual Nurs Res. 2024 Mar 28;11:23333936241242929. doi: 10.1177/23333936241242929. eCollection 2024 Jan-Dec.
Mothers' experiences of caring for children with Prader-Willi Syndrome (PWS) is largely unknown. With no treatment for PWS, parents undertake (extra)ordinary care practices to keep children safe from overeating and self harm. Knowledge of these care practices could lead to effective interventions. Narrative inquiry was used to study everyday experience with Canadian mothers. Participants cared for a child 3 to 17 years old who had hyperphagia. Participants were interviewed 8 to 12 times each over the course of a year. Narrative accounts were co-composed through a collaborative process of analysis. Engaging with participants' everyday experiences amplified complex care needs for families and gaps in health and social care systems. Narrative threads focused on engaging in (extra)ordinary care practices, rigid care work to keep children healthy and safe, tension from others while enacting these care practices, and difficulty conforming to social expectations with childrearing and care work. Recommendations for practice and policy include (a) shifting from untenable care practices, (b) reconceptualizing care work, and (c) alternative care models.
母亲照顾普拉德-威利综合征（PWS）患儿的经历在很大程度上尚不为人所知。由于PWS尚无治疗方法，父母要采取（超）常规的护理措施，以防止孩子暴饮暴食和自我伤害。了解这些护理措施可能会带来有效的干预措施。采用叙事探究法研究加拿大母亲的日常经历。参与者照顾一名3至17岁有食欲亢进症状的儿童。在一年的时间里，每位参与者接受了8至12次访谈。通过协作分析过程共同撰写叙事记录。关注参与者的日常经历，凸显了家庭复杂的护理需求以及健康和社会护理系统中的差距。叙事线索聚焦于采取（超）常规护理措施、为保持孩子健康和安全而进行的严格护理工作、在实施这些护理措施时来自他人的压力，以及在育儿和护理工作中难以符合社会期望的情况。对实践和政策的建议包括：（a）摒弃难以维持的护理措施；（b）重新认识护理工作；（c）采用替代护理模式。
