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

孩子去世后，父母的观念如何影响父母和家庭的幸福

• 批准号: 9300733
• 负责人: Pamela S Hinds
• 金额: $ 42.51万
• 依托单位: CHILDREN'S RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-29 至 2019-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9300733
• 关键词: Accidents; Achievement; Affect; Age; Americas; Anxiety; Behavior; Bereavement; Caring; Cessation of life; Child; Childhood; Communication Research; Databases; Decision Making; Diagnosis; Emotional; Enrollment; Family; Family health status; Family member; Future; Goals; Guilt; Health; Health Status; Home environment; Hospitalization; Hospitals; Infant; Intensive Care; Intervention; Interview; Learning; Life; Literature; Malignant Neoplasms; Mental Depression; Methodology; Names; Outcome; Parents; Play; Population; Questionnaires; Reporting; Review Literature; Risk; Role; Sampling; Secondary to; Site; Social Functioning; Source; Standardization; Surveys; Testing; Time; Trauma; Work; Workplace; adverse outcome; base; cohort; end of life; end of life care; end-of-life decision making; experience; functional status; high risk; improved; longitudinal design; parental influence; preference; public health relevance; secondary outcome; symptom management; theories; therapy design

 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.

 描述（由申请人提供）：与没有经历过孩子死亡的父母相比，任何原因导致的孩子死亡都会使父母面临抑郁、焦虑、无法重返工作岗位和过早死亡的风险。因此，儿童的死亡会使父母的健康和功能状况，从而使家庭面临更大的风险;需要采取战略减少这些严重风险。在我们关于治疗决策制定和症状管理的临终研究中，我们发现父母努力实现他们的内部定义“成为我重病孩子的好父母”。实现这一定义可能是 在儿童死亡的情况下，父母的健康和功能以及家庭福祉的保护因素。在我们迄今为止的工作中，我们已经能够在两个父母组（患有不可治愈癌症的孩子的父母，儿科重症监护室中的孩子的父母）中生成并验证“成为我重病孩子的好父母”的定义，这些父母参与了 虽然我们的研究表明，父母可以代表他们病重的孩子做出治疗决策，但我们还不知道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结果方面的保护程度。在这项研究中，我们将使用扎根理论的方法来综合定性和定量的证据到一个理论框架，解释实现一个人的定义是一个好的父母的影响因素和结果。我们的第一个目标是产生两个实质性的扎根理论，基于定性访谈，标准化问卷调查，现场笔记和纵向收集的理论备忘录（从生命终结决定的时间到4到6 两组有目的的抽样父母（孩子的癌症变得无法治愈的父母;孩子经历了意外和危及生命的创伤的父母）。我们计划在这两组中的每一组中招收多达40个家庭（父母一方或双方，因此多达80个父母）。对于我们的第二个目标，我们将使用元认知策略，从两个实质性理论和其他证据来源（例如，文献综述），广泛适用于其他亲本群体。由此产生的理论框架随后将被用作基础的医院为基础，临床医生发起的干预措施，旨在减少风险的父母健康和家庭福祉继发于失去一个孩子的家庭成员。