Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents,Pediatric Neurology

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Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents
Pediatric Neurology ( IF 3.2 ) Pub Date : 2021-07-30 , DOI: 10.1016/j.pediatrneurol.2021.07.013
Monica E Lemmon ₁ , Hannah C Glass ₂ , Renée A Shellhaas ₃ , Mary Carol Barks ₄ , Simran Bansal ₅ , Dana Annis ₆ , Jennifer L Guerriero ₇ , Betsy Pilon ₈ , Courtney J Wusthoff ₉ , Taeun Chang ₁₀ , Janet S Soul ₁₁ , Catherine J Chu ₁₂ , Cameron Thomas ₁₃ , Shavonne L Massey ₁₄ , Nicholas S Abend ₁₅ , Stephanie Rau ₃ , Elizabeth E Rogers ₁₆ , Linda S Franck ₁₇ ,

Affiliation

Division of Pediatric Neurology and Developmental Medicine, Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina; Margolis Center for Health Policy, Duke University, Durham, North Carolina.
Departments of Neurology and Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, San Francisco, California; Department of Epidemiology & Biostatistics, University of California, San Francisco, San Francisco, California.
Department of Pediatrics, University of Michigan, Ann Arbor, Michigan.
Margolis Center for Health Policy, Duke University, Durham, North Carolina.
Division of Pediatric Neurology and Developmental Medicine, Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina.
NSR Parent Partner, Children's National Hospital, Washington, District of Columbia.
NSR Parent Partner, Children's Hospital Boston, Boston, Massachusetts; Dana Farber Cancer Institute, Boston, Massachusetts.
NSR Parent Partner, Hope for HIE, West Bloomfield, Michigan.
Departments of Neurology and Pediatrics, Stanford University, Stanford, California.
Department of Neurology, Children's National Hospital, George Washington University School of Medicine, Washington, District of Columbia.
Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts.
Department of Pediatrics, University of Cincinnati, College of Medicine, Cincinnati, Ohio; Division of Neurology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania.
Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania; Department of Anesthesia and Critical Care Medicine, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania.
Departments of Neurology and Pediatrics, UCSF Benioff Children's Hospital, University of California, San Francisco, San Francisco, California.
Department of Family Health Care Nursing, University of California, San Francisco, San Francisco, California.

Background

Parents of neonates with seizures are at risk of mental health symptoms due to the impact of illness on family life, prognostic uncertainty, and the emotional toll of hospitalization. A family-centered approach is the preferred model to mitigate these challenges. We aimed to identify strategies to promote family-centered care through an analysis of parent-offered advice to clinicians caring for neonates with seizures.

Methods

This prospective, observational, and multicenter (Neonatal Seizure Registry) study enrolled parents of neonates with acute symptomatic seizures. Parents completed surveys about family well-being at 12, 18, and 24 months corrected gestational age. Parents were asked open-ended questions eliciting their advice to clinicians caring for neonates with seizures. Responses were analyzed using a conventional content analysis approach.

Results

Among the 310 parents who completed surveys, 118 (38%) shared advice for clinicians. These parents were predominantly mothers (n = 103, 87%). Three overarching themes were identified. (1) Communicate information effectively: parents appreciate when clinicians offer transparent and balanced information in an accessible way. (2) Understand and validate parent experience: parents value clinicians who display empathy, compassion, and a commitment to parent-partnered clinical care. (3) Provide support and resources: parents benefit from emotional support, education, connection with peers, and help navigating the health care system.

Conclusions

Parents caring for neonates with seizures appreciate a family-centered approach in health care encounters, including skilled communication, understanding and validation of the parent experience, and provision of support and resources. Future interventions should focus on building structures to reinforce these priorities.

中文翻译：

为受新生儿惊厥影响的儿童和家庭提供以家庭为中心的护理：父母的建议

背景

由于疾病对家庭生活的影响、预后的不确定性和住院造成的情绪损失，癫痫新生儿的父母有出现心理健康症状的风险。以家庭为中心的方法是缓解这些挑战的首选模式。我们的目的是通过分析父母为照顾癫痫新生儿的临床医生提供的建议，确定促进以家庭为中心的护理的策略。

方法

这项前瞻性、观察性和多中心（新生儿癫痫登记）研究招募了患有急性症状性癫痫的新生儿的父母。父母在矫正胎龄 12、18 和 24 个月时完成了有关家庭幸福感的调查。父母被问及开放式问题，以征求他们对照顾癫痫新生儿的临床医生的建议。使用传统的内容分析方法分析响应。

结果

在完成调查的 310 位家长中，118 位 (38%) 分享了对临床医生的建议。这些父母主要是母亲（n = 103, 87%）。确定了三个总体主题。(1)有效地传达信息：当临床医生以可访问的方式提供透明和平衡的信息时，父母会很感激。(2)理解和验证父母的经验：父母重视表现出同理心、同情心和对父母合作临床护理的承诺的临床医生。(3)提供支持 和资源：父母受益于情感支持、教育、与同龄人的联系以及帮助导航医疗保健系统。