How Parent Constructs Affect Parent and Family Well-Being After a Child's Death

 描述(由申请人提供)：与没有经历过儿童死亡的父母相比，由于任何原因死亡的儿童使父母面临抑郁、焦虑、无法重返工作环境和更早死亡的风险。因此，儿童的死亡使父母的健康和功能状况以及家庭面临更高的风险；需要采取战略来减少这些严重的风险。在我们关于治疗决策和症状管理的临终研究中，我们发现，父母努力实现他们内心的定义：成为重病孩子的好父母。实现这一定义可能是一个 在儿童死亡的情况下，保护父母的健康和功能以及家庭福祉的因素。到目前为止，在我们的工作中，我们已经能够在两个父母群体(患有不治之症的儿童的父母，在儿科重症监护环境中的儿童的父母)中生成并验证对我的重病孩子来说是一个好父母的定义 我们还不清楚影响父母实现其定义的能力的内部和外部因素，也不知道这一成就在父母健康和家庭福祉成果方面的保护范围。在这项研究中，我们将使用扎根的理论方法，将定性和定量的证据综合成一个理论框架，解释实现一个人的好父母定义的影响因素和结果。我们的第一个目标是基于定性访谈、标准化问卷、实地笔记和纵向收集的理论备忘录(从生命结束决定之时至第四至第六天)，产生两个实质性的扎根理论 两组故意抽样的父母(孩子癌症无法治愈的父母；孩子遭受意外和危及生命的创伤的父母)在儿童死亡几个月后进行调查。我们计划在两个小组中每组招收多达40个家庭(单亲或双亲，因此最多80名父母)。为了我们的第二个目标，我们将使用综合集成策略，从这两个实质性理论和其他证据来源(如文献综述)中发展出一个广泛适用于其他亲本群体的综合形式扎根理论。由此产生的理论框架随后将被用作以医院为基础、由临床医生发起的干预措施的基础，旨在减少因失去子女家庭成员而对父母健康和家庭福祉造成的次要风险。

 DESCRIPTION (provided by applicant): The death of a child by any cause places parents at risk of depression, anxiety, an inability to return to the work setting and an earlier death as compared to parents who do not experience the death of a child. Thus, a child's death places the health and functional status of parents and, thereby a family, at heightened risk; strategies to reduce these serious risks are needed. In our end-of-life studies about treatment decision­ making and symptom management, we discovered that parents strive to achieve their internal definition of 'being a good parent to my seriously ill child'. Achieving this definition could be a protective factor for parent health and functioning and family well-being in the context of a child's death. In our work to date, we have been able to generate and validate the definition of 'being a good parent to my seriously ill child' in two parent groups (parents of a child with incurable cancer, parents of a child in the pediatric intensive care setting) who were involved in treatment decision-making on behalf of their very ill child, but we do not yet know the internal and external factors that influence the parents' ability to achieve their definition nor the exten to which this achievement is protective in terms of parent health and family well-being outcomes. In this study we will use a grounded theory approach to synthesize qualitative and quantitative evidence into a theoretical framework that explains influencing factors and outcomes of achieving one's definition of being a good parent. Our first Aim is to generate two substantive grounded theories, based on qualitative interviews, standardized questionnaires, field notes and theoretical memoing collected longitudinally (from the time of an end-of-life decision until 4 to 6 months after the child's death) from two purposefully sampled groups of parents (parents whose child's cancer becomes incurable; parents of a child who experienced an unexpected accidental and life-threatening trauma). We project enrolling up to 40 families (one or both parents, thus up to 80 parents) in each of the two groups. For our second Aim, we will use metasynthesis strategies to develop an integrated formal grounded theory from the two substantive theories and other evidence sources (e.g., literature review) that is broadly applicable to other parent populations. The resulting theoretical framework will subsequently be used as the basis of a hospital-based, clinician-initiated intervention designed to reduce the risks to parent health and family well-being secondary to the loss of a child family member.